Metamorph: The Journey Back

Ronne passing

2005-10-22T01:19:00.000-07:00

To all the friends, family and fans of the Butterfly, this is her husband, Dan.
I am sorry to post this news but some of you are already aware of it. I just feel that Ronne wanted an ending to this blog and was unable to do so. I will fill in the final blanks.

Shortly after the last blog by Ronne, things went downhill very quickly. After discovering that her remission was over, She started another Chemo regimen. She continued to experience tremendous pain and the only recourse was to increase her morphine dosages. Finally on Sep 27, 2005 Ronne was forced to check into San Diego Hospice for 24 care and pain management as I could no longer care for her at home. This was the hardest decision of my life as Ronne wanted so desperately to not have this happen. After 4 days in hospice it was discovered that the cancer had spread to her spine and hips.

The butterfly finally realized that she would not win this battle and prepared herself to go on to the next life. She said goodbye to her friends and family over the next week as her condition quickly deteriorated. Although extremely sad for the time, in retrospect it was a final gift from her to be able to tell us all individually goodbye. Most people don't get that in life.

Ronne's condition worsened to the point that she was hallucinating and screaming out loud. We were told by the doctors that the cancer had spread to her brain. She was eventually put into a drug induced state of semi consciousness, no longer feeling pain, but no longer lucid or able to communicate with us.

I drove myself close to insane in those final days, trying my hardest to stay at the hospice room with Ronne as I had promised her I would not desert her and that I would be by her side when she passed.

Ronne passed at 315 A.M. Tuesday, October 11, 2005. I held her in my arms until her once powerful and iron willed heart stopped beating , and I cried. I held her and kissed her and talked to her until her best friend, father and step- mom arrived and let them say goodbye. I returned while she was still warm and I held her some more and cried some more, then said goodbye.

Before Ronne became incoherent, I made her a promise. She had raised close to $15,000 for the Susan G. Kommen Foundation for Breast Cancer Research, and had asked me to walk in her place in the annual 3 day 60 mile walk for a cure in San Diego. Three days after Ronne's death, I began the walk and on Sunday, October 16, 2005, I completed the 60 mile walk in her honor. Through the entire 3 day walk, my ankles and feet swelled and blistered, but the pain I carried in my heart was so much worse.

Today, Saturday, October 22, 2005, I will say goodbye to my gorgeous wife's earthly remains as we honor her at Mt. Soledad in La Jolla CA as per her wishes, and scatter her cremated ashes to the wind.

I have lost my wife in her physical self and I mourn this loss with so much sorrow and unspeakable pain in my heart and soul.

She was my soul mate, I loved her the first time I saw her and my only regret in life will be that I did not let her know that sooner. The time I spent with her, first as friends, then as lovers is so precious and the memories of that time here on earth with her will have to do until I see her again.

Although my body is filled with grief for Ronne in every fiber, I know that I will see her again. One reason Ronne held on for so long was for our daughter Jennifer and our daughter Veronica. But she told a friend that she was afraid to go because she thought she wouldn't be able to find us when we joined her later. We told her we would find her. I told her I would find her every day for the rest of my life , I will feel her in the warm sun on my face, hear her in the gentle breeze, feel her in the pulse of the ocean waves, taste her in the sweet salt of the sea and smell her in every rose. I told her I would find her after I leave this earth by following that bright light of a soul that guided us and inspired us here in this life.

Thank you all for following her journey. I just wish she could keep posting her new journeys as well.

I love You Ronne.

Your husband, forever

Nice while it lasted

2005-09-12T15:55:00.000-07:00

Remission is over.

Cancer is progressing again.

Time to try a new drug. Next on the menu: Doxil, given once every 3 weeks.

I'm really upset and depressed. We are running out of drugs to try.

In the Company of Women

2005-09-06T12:13:00.000-07:00

Before cancer, I was one of those women that mostly had male friends. Sure, I had female friends too: some that I have known a long time and feel very close to, but for general companionship, loyalty and conversation that was straight from the hip, it was my male friends that I turned to most.

If I recall correctly, my mother had mostly male friends once she was divorced from my dad. Although she never said so, I can tell that she felt that other women were nothing but competition for boyfriends, jobs, other women friends and anything else you can list. To help keep this fear alive, she would reinforce it by having hit and run friendships with women. In that I mean she would meet a woman and become instantly friendly with her, then quickly move on to a best friends relationship which would then abruptly change with a brutal surprise attack of verbal accusations and abuse. It would always end with my mom getting so angry she would forever stop talking to this new friend and with my mom having hurt feelings as the victim. Not a good role model, and thankfully not one I followed.

Back then (before cancer and when I was single) it just seemed easier to stick with my guy pals...My male friends generally weren't moody or jealous of anything I had going on in my life and they were ready to meet me for dinner/coffee/movies any old time and I usually didn't need to give them much warning-- if they were free they would go and if they weren't they would tell me why and no one would have hurt feelings. And if I canceled our plans at the last minute (something I'm famous for doing) they were usually ok with that too.

Except for Dan, the male friends I had stayed in the friends category for life once they were inducted. If that bothered any of them, I would be the last to know. I tend to be oblivious to that sort of thing anyway...In fact after years of friendship with Dan, I still practically had to be hit over the head with his feelings to see them for what they were--romantic and starring me as his leading lady.

But then cancer came and changed all that. The women in my life stepped forward and filled in needs I didn't even know I had. My sister and stepmother became rocks that I could cling to in a storm and helped in both emotional and financial ways to keep me and my family afloat. Angela carefully and thoughtfully nurtured me and my family. Brenda was supportive and helped me navigate the sea of cancer treatments and emotions I had before, during and after tests and scans. Helen understood my fears of mortality and bolstered my will to keep going. Mary Jo quietly listened to everything and validated it all as normal and made me feel like I could cope with anything that came my way. The gals from my pregnancy support bulletin board read my posts about all my trials and tribulations dealing with cancer and never once made me feel like I was killing off the joy they shared with eachother talking about getting pregnant, being pregnant and raising babies. Judy and Linz sent me care packages and somehow just guessed when I was feeling low and needed a pick me up in the form of a surprise in the mail. Melinda came and did yoga with me weekly for a few months when I thought cancer was going to leave me alone. Mandi bought or cooked dinners or the family, watched Jennifer and walked with me during sunny days anytime her busy Doctor in Resident schedule would allow. Susan helped with baby transportation and babysitting as often as she was able. And Jill helped me remember that even a longtime good friend can be overwhelmed so much by this chronic illness that it hurts too much to be part of my life and for her own good, she must cut her ties to me without a word of explanation. And I'm ok with that.

Cancer survivors like to talk about the gifts of cancer. It can be hard to think of something so malicious as cancer giving gifts, but I think this is one of them for me. If not for cancer I might never have known how wonderful the friendship of women can be.

Health update: I'm still going in for weekly chemo and it's really slowing me down--I almost never feel energetic anymore, and I need tons of sleep--it makes me sad to waste so much of the day laying around. I go in for chemo three Wednesdays in a row with one off. This Wednesday (09/06) is my day off from chemo so with any luck I'll start to get a teensy bit of energy back before I'm slammed again. Is the treatment still working? I don't know. I worry about it every day. I obsessively check my right side rib cage and chest for lumps and bumps but I'm so skinny now that I can't even tell what might be a bump due to cancer recurrence and what's just a protruding bone with no fat or muscle over it anymore. I ought to be going in for a scan pretty soon to see what's going on in my lungs.

Just Breathe

2005-08-09T12:41:00.000-07:00

After careful thought and consideration, I've engaged myself in a malpractice lawsuit against the doctors that misdiagnosed me back in my 5th month of pregnancy. In early January, I shopped around and found a large lawfirm in Orange County; they were willing to take my case on contingency which means that they only get paid if they win by either trial or settlement.

Part of the lawsuit process is for each person involved to give testimony by deposition. I went first and mine was done in two parts because it took so many hours. During part one, my own lawyer asked me questions so that I could tell my story. The depositions are all transcribed and videotaped so that if the case goes to trial, the jury will be able to watch each one. I was deposed in part one for approximately 6 hours.

My lawyer did a great job of deposing me and while it was very emotional to have to go over the whole thing, I think it will be worth it in the end, at least I hope it will. I haven't been able to return to work since going into the hospital in June and I don't know if I'll ever be able to go back. After all, I'll be getting chemo for at least the next 5 months and for all I know, I'll be getting chemo of one kind or another for the rest of my life. I think there may be times when I get a real break from chemo because my cancer might go into full remission. In order for that to happen, I would have to test NED (no evidence of disease) by some sort of reliable test or scan and my oncologist would have to make a leap of faith that my cancer had gone into hiding well enough to allow me a reprieve. This is just a guess on my part because I've never actually spoken to my onco to ask him what happens if I ever do get to a place where I'm NED. The point is, if I can't return to work, how do I help support my family? The way I see it, if my cancer had been diagnosed sooner (like back when I first found the lump), my treatment would have very likely been much easier, shorter and more successful at full remission and/or cure.

Anyway, part two of my deposition was where I got cross-examined by the opposing lawyers. There were three lawyers present and each asked me his questions one at a time and each lawyer had a distinct style of questioning. The thing each lawyer had in common was that the theme of the questioning appeared to be that it was MY FAULT for getting breast cancer. Hard to believe but absolutely true. My own lawyer had warned me that this was a possible defense so I was as ready as I could be for such a rotten accusation but was still emotionally devasting.

One lawyer dug back to medical records from 1994. He found a note in my file from my general physican where he suggested a baseline mammogram. I was in my mid-twenties at the time and I didn't feel that I had a high risk for breast cancer, so I didn't get the mammogram. For those of you who are not breast cancer-savvy, I should point out that it is common for a woman to receive her first mammogram at age 35+ so my decline of the test was not unusual. This lawyer did not come right out and say that my later diagnosis of breast cancer was my fault because I blew off this test in 1994 but he strongly implied it. I see this as a weak defense because I know how fast my cancer grows and if it had been there in 1994, I'd either be dead now or the tumor would have been the size of Qualcom stadium by the time I was in my mid-30s when I found the lump in the first place. And just for the record, it was the size of a jellybean when I first found it, not the size of a sports stadium.

Another lawyer tried to establish that even though I had the opinions of two doctors saying that the lump I found during my pregnancy was nothing to worry about, that didn't mean that my obligation to my own health stopped there. He implied that I should have taken it upon myself to seek a third opinion or that I should have demanded testing to accurately determine the lump's pathological origin. And he implied that my ob/gyn did everything he was responsible to do simply by referring me to another doctor.

As a more educated medical patient writing to you now, I realize that I must be aggressive in my requests for tests if I think they should be ordered and I must always be my own advocate. But as a pregnant woman who was busy worrying about the health and safety of her unborn child, I didn't. I simply didn't understand that not all doctors are trustworthy, nor do they know everything about all facets of medical care, and worst of all, they may not care that much about my personal health.

Lawyer number three made it his business to ask the same questions over and over, only reworded purposely to try to trick me into giving a different answer, thereby making me appear inaccurate and inconsistent in my knowledge of what actually happened. As I began to get more and more tired, I was less able to see through the questions as repetitive, so in all likelihood, some of the answers I gave probably did make it seem like I didn't know what happened and when, even though the entire incident is very fresh in my memory.

Part two of my depostion lasted about 7 hours and I cried through about half my testimony. I tried hard to breathe and relax before answering, but these lawyers really came after me and they each did their best to make it a terrible experience. I'm sure they are paid well for this. I hope they can sleep well at night knowing that they are trying to get inadequate doctors off the hook by use of deception instead of actual proof.

Remission

2005-07-21T09:36:00.000-07:00

The first time I ever heard that word applied to me was just yesterday. Dan called my oncologist to ask if he thought he (Dan) might be able to return to work since I'm feeling so much better. The doc said, sure, she's in remission now and you should enjoy it for as long as you can. Dan will go back to work sometime soon, maybe even next week.

I really only thought the word remission was used by doctors when all signs of cancer were gone, but based on how the oncologist is using, it applies when a patient has a dramatic response to treatment and the cancer has receded by quite a bit, since this is what mine has done. I will have another CT scan in about two months unless I become sick and/or symptomatic that cancer has started growing again. And the doc said I will have this treatment for at least 6 months before we review whether I can stop, unless I stop tolerating the treatment (e.g, liver problems develop or some other unpleasant side effect starts bothering me).

I had another chemo treatment yesterday and I feel ok today... just tired but not sick. I'm grateful to not feel nauseated because that effects everything I try to do--eat, sleep, entertain myself. It is a big gift to be free of that feeling.

I was reading my old blog entries and I realized I haven't written much about Dan and how well he has taken care of me since I got sick. He has been very supportive and has taken over literally every household job and chore, along with 99% of all baby care for Jennifer. I'm feeling better now so I wish he would let me do a little more but he is really against it until I am completely healed and free of all cancer. I told him that may never happen but he really feels strongly about it.

I think he doesn't realize how unique he is in the world of husbands. Lots of marriages end when a catastrophic illness effects one of the spouses. Especially when the illness disfigures one of the spouses so dramatically, the way mine has. After all, I 've lost a breast, lost my hair twice and had some rather dramatic weight loss that makes my figure look completely different. He just can't imagine how someone's husband just wouldn't step up to the plate and take care of things.

I really worry that I'm not taking care of him the way he needs to be taken care of. Romantically, our marriage has really suffered during my illness, and its very noticeable to both of us since we used to be so connected when it came to that.

Dan feels like my illness has put him and us into a holding pattern. I don't really feel that way because I can't afford to do that. I just have to keep going and trying to do the things I like to do or things I feel compelled to do before I die. I wish Dan would do the same, at least as far as professional ambitions. He really wants to change jobs and I've done my best to encourage him to do that even though I still have a lot of treatment ahead. He needs to be happy with how he spends his day, and since most of us work 8hrs or more each day, I think its crucial for people to find work that is satisfying, at least to some degree. I know we'd be able to work out whatever situation we had if his new job required an odd schedule. Dan is interested in going back to being a Federal Firefighter and that schedule would be a challenge for us but I think we could work it out. With firefighting, the schedule is very condensed but it would leave him about 14 days each month where he wasn't working. When he was working, the shifts would be 24hrs long, with some days worked consecutively. That would mean that I would have to take care of the girls on my own some days but I think I'm feeling good enough to do that. I just don't know how I convince Dan that he needs to pursue any and all jobs that look interesting to him and then let us worry about how to make it work. I don't want to be the one that holds him back--that equals resentment in a marriage, something we could surely do with less of, given all the other things that Dan sacrifices to help me while I'm dealing with a chronic illness like breast cancer.

At last

2005-07-14T16:19:00.000-07:00

When you wait and wait (and wait and wait and wait) to hear someone give you some good news, how does it feel to finally get it?

Great.

I had a CT scan today and the image tells a story about how things are going inside my chest. The story says cancer is now losing and chemo is winning. I have had significant improvement in my lungs, with the cancer receding dramatically on both sides. Even the fluid that has plagued my lungs and hindered my breathing since February has reduced in amount.

The winning combination is thanks to two drugs: Avastin and Taxol. Taxol made my hair fall out again (happened last week and is no easier the second time) but if it kills all the cancer then I happily concede each hair follicle in order to save my life and give me more time with my family.

Will it totally kill all the cancer? I don't know and I don't think anyone can tell me. Cancer is one of those illnesses that can go away and come back pretty much whenever it wants. That's why people use the term living with cancer. It sucks, but I guess I'd rather live with it than not live at all.

I don't know how many treatments I'll have. My guess is, I'll be treated until I am NED (no evidence of disease) and then for a little while past that. Or, I could be on treatment indefinitely, if that's how my cancer needs to be managed. The drug Avastin is so new that I would imagine doctors are still learning how to use it to it's full potential. Some chemo drugs have a lifetime maximum of how much a patient can take but I don't think either of these fall under that category. Lots of questions to ask the oncologist.

In other news, I gave the first part of my deposition for my malpractice lawsuit--that entailed answering questions from my lawyer so we could tell my story in my words. My lawyer said I did really well--I guess you can say too much, too little or you can say it wrong somehow. After the questions were over, I felt like I had been beaten with a lead pipe because it was so emotional to answer everything and tell the story. Part II will be the other lawyers asking me their questions. My lawyer said to expect that they will try to turn it around so that it sounds like I am to blame for the delay in misdiagnosis. Can you believe that? Just cross your fingers that this is over soon and I come away with having made those doctors know they were at fault for my current state--a more accurate and quick diagnosis would have saved me months if not years of treatment. Those doctors should either stop practicing or rethink how they practice. The other thing I'm hoping for is some sort of settlement so that I don't have to worry so much about money. If cancer is going to be hanging over my head for a lifetime, then I need to be prepared financially for a lifetime of medical expenses. Not to mention that if I can't return to work, something needs to take the place of my salary.

Thank you to everyone who is saying prayers on my behalf. Keep 'em coming. Namaste.

Catching my breath

2005-07-02T23:03:00.000-07:00

Yes, literally.

I really don't even know when I last posted or what I wrote. I had some time in the hospital because of an infection, fever and shortness of breath a while back and I can't remember if I logged in since to write it all up. I'll have to check later.

Funny thing about that hospital visit. I'd been feeling crummier each day leading up to it but it gets so hard to tell when you have the crap kicked out of you from chemo all the time. The regular questions get harder to answer. Am I tired? Fatigued? Short of breath? No appetite? Weight loss? Sleeping poorly? Well...yeah, for like the last year. I think the main thing this time was the fever of 102.8 that set it apart.

I had to come home with oxygen tanks and a pain pump (pca pump). I think I'm pretty much done with the extra oxygen now, I believe the antibiotics healed the infection and my lungs got back their reserve because I can walk up our stairs and not get winded and that's on my own steam, not the oxygen.

I think Veronica gets pretty scared when I come home with more stuff attached to me. The new chemo includes the evil yet necessary decadron which is a drug I respond badly to from an emotional standpoint. In other words, it makes me soooooo depressed. I just cry. No reason, no warning. I suggested to the onco that I try out Zoloft to see if it will counter that, at least somewhat. I've only been on Zolo for a few days, surely not enough for it to have gotten the upper hand. The good news is that decadron is only in my system for about three days because of chemo and as of yesterday, I could feel it leaving me.

My dad, stepmom and sister have all been here in San Diego to help out me and my family. Each has helped wonderfully in their own way--another blog entry for when I have more energy. In this same space/time, my mom (she likes to call herself The Birth Mother now) invited herself out and sort of bumped dad, stepmom and sis out of place, which was disruptive but unavoidable without a huge confrontation. I guess that's how my mom plans to do things now, the slash and burn method? Maybe next time I'll be stronger and call her bluff and just say what I really wanted to say...don't come out please, you don't make me feel better. I already have people here who are taking care of me the way I need.

My friend Judy was in San Diego for a little bit of business (www.strollerstrides.com) and she built in some time for visiting so I got to see her for the last two days. she is part of a Navy family and now has to move about every two years but I knew her first when we were just single girls having fun in San Diego. She, her husband and beautiful little daughters live in Jacksonville FL right now. Judy is such a good person, and seeing her really lifted my spirits. She brought me pictures of our single girl times together (Mayor's Midnight Run Marathon 1998 and so on), she walked with me, hugged me when I cried for no reason, and today brought me a cute outfit to go with some shoes that my sister bought for me a month or so ago. I wished Judy still lived here... she's the kind of person you always want on your team if you know hard times are ahead.

I still have my hair and I don't know why. I've had two weeks of chemo and I think it ought to be falling out. I'll have to research Taxol given in this way, maybe it just takes longer for the hair to fall out. The onco and nurses seemed sure my hair was not going to stay. I'll miss it.

A short reprieve

2005-06-19T18:14:00.000-07:00

Dan I and took a few days to spend some quite nights alone at a beautiful bed and breakfast place up at Newport Beach. It was wonderful. The drive wasn't too long, the traffic was not California awful and we found the place with little or no problem. Remind me to call them about their elevator being out all weekend. Ordinarily this wouldd not have been a big dealio but since I have oxygen strapped to my face to accommodate for some tired lungs, an elevator would have just made our stay a bit more convenient.

Decorated Victorian style by the owners, The Dorymann's Inn was just what they had shown me on web--large quiet rooms with nice juicy bathtubs and fireplaces in each room. It was located right across from the beach and pier so once the car was parked, it was all good.

Somehow all this rest has made me more tired than when we got started out. All the meds I'm taking for pain just make my brain feel retarted.. No hand to eye coordination and lots of slow, rolling fog. Like of the Edgar Allen Poe Variety.

So I am out of wok for a couple of months. The worry list is beginning. I have to remember that this is no scam, this is real and my claim is real and I am worth it to do this right. My goals are

To rest
To attend all doctor appointments with a second pair of ears and a second pair of arms...this news keeps getting worse so I need my best huggers now,
To eat regularly and healthfully. You would not believe it it...last night I triumphantly finshed half a bowl of lobster bisque, then had half of a deliciously concocted salad made of crunchy asian pears, spring greens, blueberries, gorgonzola cheese and candied walnuts followed deliciously by a perfectly done, medium steak diane with mushrooms that filled the air with its precious aroma. It was so good. I ate as much as a I could and ever so gracriously, when asked, I turned in my fork and refused desert.

We paid the check and headed back to our room in the secret hallways of our sweet little place. By the time we had reached the halfway mark to our roomI knew it was not to be. The food had sort of lodged it's way in my chest and had quit descending. By the time I got all the way up to our room, I headed right for the bathroom. Bye Bye my delightful dinner, we will meet again.

When will I start chemo? Maybe Wednesday. Like I said I still feel tired. And since this one willl make all hair fall out, I would like to try to duplicate my hairstyle and it's highlights, which I rather like. I do have two wigs left over from my last run in with TAC chemo which made me egg bald for a year but frankly I'd rather wear mickey mouse ears than put one of those wigs on my head again. Yuck.

Infections and an emergency hospital visit

2005-06-16T20:09:00.000-07:00

I felt crappy on Mon and Tues and by Wed morning I just couldn't get moving. I tried taking a bath to loosen thing up (I have a constant backache now) and then I got out of the bath, I vomited. Just a little though because with two days of intensive backpain, I had not been eating much. Anyhow, I stumbled back to bed, flipped on the heating pad to relieve the pain in my back, and then called my pal Angela to come over to help since Dan had already left for work with the babyshoe at his side.

I also called the parent of a school pal of Veronica's to help get her in for the day. Angela arrived in about 30 minutes and started feeding me pedialite unflavored (tastes like soap flakes) until she was sure I could keep it down. The onto some gatorade. Angela said, I think you have a fever, let's check. Sure enough the thermo shows 102.6, not good. Thanks to recent blood work, I knew I had a low white count and was susceptible to infections so the rest of the day was already not looking good. We called the onco office and they demanded that I come in to see them for an evaluation. Angela gets me out to the car and to the onco office within 10 minutes. The chemo nurses draw blood and start me on IV fluids while the doc puts together an express admission to the hospital for me. My pulse is high (145) and my breathing is labored because of the infection. For most of this I am reclined in a chair with a blanket over me just wishing I could bein the hospital already where they could take the pain away from my tortured back.

I was in the hospital from Wed -Mon, mostly because they were having touble getting my pain mamanged properly. It seems to be ok now.

After a chest xray, MRI and CT scan, it was determined that my cancer is still progressing.There is a large tumor forming over the right lobe of my lung and is starting to squeeze down on it, hence the tremendous back pain and shortness of breath.

Since my cancer is still progressing (growing, geting worse) so that means I'll be switching from Navelbine to some new drugs. Two this time: Avastin and Taxol. Taxol will make me bald again, btw, I am still getting used to the idea of dealing with that nightmare. I have oxygen at home now that I have to keep plugged into my nose ful time and 02 travel cannisters to lug around for when i can get out of the house. I will be off of work an on disability for a long time.

It's official, I am chemo resistant. This last stab at new chemo is only because I'm not ready to stop fighting for more time with my family. It' so hard to believe I've arrived here after only being diagnosed since Mar 04. My mood is up and down, and I would say this is largely to do a safe comfy sense of denial and a brain that is simply not ready to quit fighting the good fight just yet.

My dad and stepmom were already sheduled to visit from Jun 8-23 so their timing turned out to be perfect for helping us all with the stress of my being in the hospital and Dan singlehandedly trying to manage out two sweet girls. They may actually extend their time if it seems like it would help.

My ever-supportive sister also hopped on the first plane she could get from NYC to SD and stayed until Wed evening, promising to come back as soon as dad and JoAnne haveto leave if we still need some help. She spent her frist two nights sleeping in the hospital cot in my room to be there in case I needed help right away like if the nurses were responding too slowly for things like administering pain medicine. Meanwhile she paid for this week of Jen's daycare, a cell phone bill and a gas credit card bill, all without me saying a word about it. Plus she left behind another check for $1k to be sure we could continue having a housekeeper come around as often as we need to keep the monkey house clean.

And just to make the hug around us a little tighter, during the week while I was in the hospital, our friends Mark and Alyce dropped off a big bunch of groceries, and now Alyce is trying to help us coordinate how we will get V to and from daycamp each day if I can't safely drive--School is out on Jun 17. (Rx morphine + oxygen = DUI?)

The final link in the hug chain is that my Laurel, reiki master, came all the way to my house so I could have a session this week because I couldn't get the energy to get in the car or even muster up a ride.

It's been a rotten week and yet I feel so blessed by all the warmth my loved ones are showing me. I think, what did I ever do for any of these people to come through for me like this?

Final thoughts: I'm playing by the rules and doing everthing I possibly can, including taking every test or medicine known to kill cancer. I admit I could do a better job eating more -- I am really working on that too--but it is so hard to eat a nurishing meal when it feels like Pele is practicing his kicking by aiming for the right side of my back. Mostly I keep a positive attitude and am grateful for my remaining days here on God's Green Planet. Can I have a just a peek at the plan? Does it say lay down and go quietly or does it say Stand and Fight this one last time and you will be rewarded with your life.

I dream about watching Jennifer graduate college someday. About holding her children in my arm as their grandmother. About seeing Veronica find first love. And about being a wonderful wife and companion to my husband that he deserves.

Thank you friends and family, for once again racing to help us to help the moment you are needed. Namaste.

Braveheart

2005-06-03T14:31:00.000-07:00

I was up late one night this week--well ok, I was up late lots of night this week but this one particular night I was watching tv to try to get myself good and tired so that I didn't need to take any sleep medication. As I channel surfed, I noticed that Braveheart was on. It was towards the ends where the main character, William Wallace, has been caught by his enemies. The queen is trying to get him to take some drugs so that when he is tortured, it doesn't hurt as much. He declines the drugs and says "All men die. Hardly any men really live," or something to that extent. I thought it was a good quote.

This week has not been great. My blood counts continue to be very low and I was denied chemo. The bad part about that is to get my counts up I had to go to the oncology office every day for an injection (one day it was two injections) and sometimes a blood test too. I'll have to go in on Saturday and Sunday for more booster injections and then I ought to be ok'd for chemo on Monday. I've been very tired and run down as well as being prone to crying easily.

This morning I went to have my blood drawn by UCSD to see if my sister and I are a match for their bone marrow transplant (BMT) program. She will get fedexed a package with all the components for her blood draw that she needs to bring to a lab near her so that she doesn't have to come all the way out to CA. If we are a match, then I may have some decisions to make about whether or not this is something I want to pursue. As I mentioned in previous blog entries, the treatment is largely experimental for breast cancer patients. Anyhow, if we are not a match, I'm not eligible for the UCSD BMT program because they are only working with patients who have a sibling match. The odds of my sister/sibling being a match is 25%.

My malpractice lawsuit got picked up by the attorneys in Orange county, did I already mention this? I'm hoping it doesn't drag out for too long. It sure would be great to have enough money in the bank so that I didn't have to worry so much about dragging my tired self into work anymore. Frankly, weekly chemo is kicking my ass and it's getting harder and harder to come in even for a few hours per day. My company will not allow employees to work remotely (from home), which stinks. They have been so great (and when I say great, I really mean it) about everything else. The enormous flexibility and compassion they have shown me makes it hard for me to feel justified in complaining about this one thing too much, but I think its going to be the beginning of the end for me. Time will tell. I really wish this stupid cancer would leave me alone so I could go back to having a normal life.

I'm getting pretty tired right now so I guess I'll call it a day. Time to get some sleep.

Flunking blood tests

2005-05-24T13:43:00.000-07:00

Of all tests to flunk, yesterday I flunked my blood test and was denied chemo--my white cell count was too low for treatment. After a few minutes of conversation, I convinced my oncologist to give me white cell booster injection of some stuff called Neupogen. As a side effect, it also gives a nasty back ache to the recipient. Anyway, I'm going back to the oncology office today to see if the stuff got my white cell count high enough for treatment this afternoon. If not, then I'm forced to take a week off to let my body recover.

My red count is low too, but not low enough to need another blood transfusion. I'm pretty tired again though, I can tell that the good parts of my body are getting beat down from weekly treatment. Even with feeling tired (low red count) and being more susceptible to catching infections (low white count), I don't want to go a week without treatment and if it was up to me, I wouldn't. I think this chemo might actually be working and I don't want to give the cancer even a few hours of rest, I want it destroyed right away. No breaks. Relentless war against the evil cells.

I went to see my new chiropractor and massage therapist yesterday. I'm sore today from that, but hopefully its the good kind of sore, like a workout used to provide to me. The chiro told me that basically my entire back is out of alignment, including my ribs and shoulders. My spine is even sort of curved now, all thanks to surgery and what happens when muscles get cut through during the operation. I feel like a hunched-over old lady now. The chiro suggested that whenever possible, I look in the mirror and visually adjust my posture, especially where my shoulders are concerned. When I do this and force my shoulders to be level and straight, it feels like my right shoulder (the surgery side) is much higher than the left because it has gotten used to being so much lower to protect itself.

The massage therapist and I are going to trade services: she needs a small website and I need more massage. I did a sketch for her today, it was so nice to do a little graphic design. My work has taken me pretty far from design over the last couple of years and I find that I really miss it. Its what I do best and what I enjoy most. Sure I'm good at editing, correcting, organzing and updating my employer's many websites but it sure isn't as fun or as mentally stimulating. Anyway, the massage therapist was really nice and I hope she can pull together the material she needs to so that we can do the trade we talked about. I've tried this trading services idea with other people before and it always seems to turn out that they don't have the time or inclination to write copy for their own website, even when they really seem to need one. I do have a friend who does writing and editing, maybe I can pull her into the mix too. I haven't tried that tactic before...I know not everyone likes to write and maybe that's a bigger stumbling block than I thought.

Ok, time to go get the healing nectar (chemo). Cross your fingers for a good white count. Die cancer, die.

Lessons Learned

2005-05-19T15:36:00.000-07:00

One of the things I've noticed since having cancer is that I'm in a rapid period of growth and learning. This includes:

cancer research, in order to try to get myself the best care.
life lessons, to try to make some sense of this mess.
personal advocacy, in order to make treatment easier whenever possible.

Yesterday I met with my reiki master healer, Laurel; we have a weekly Wednesday session that is relaxing, energizing and empowering. Laurel is a stage IV cancer survivor and we just really connected right away, which is something she and I were talking about during our session yesterday. It's something I've blogged about before, too. Those connections happen just enough so that they stand out in your mind but not so often that you can't appreciate them as the miracle that they are. I invited Laurel to read this blog...I hope she does.

Anyway, usually my reiki session is comprised of 1/4 talking and 3/4 reiki. Yesterday's session was more the opposite, and I think it must just be that I didn't realize how much I needed to chat and sort things out and I knew Laurel was the one with the answers that would make sense to me. This is also the first time Laurel mentioned that during her cancer treatment, she was a patient of my oncologist. Since she survived stage IV cancer and has been cancer free for some time now, that gave me new faith in my oncologist too. One of the things Laurel said that just clicked for me was "today is a good day to live, or, today could be a good day to die." To a normal person (aka, not a cancer patient), this might sound a little too grim reaper-ish but to me it sounds just right. It just reiterates the idea that it's important to live each day the best I can, even when I feel sick, tired, confused or depressed (or all of those things at once).

Speaking of feeling tired, I saw one of the chemo nurses yesterday too and she asked if I was feeling better since Friday's blood transfusion. I really had to think about it because its been so long since I wasn't dog tired and had the energy to really exert myself. Of course a blood transfusion isn't going to do all that (give me energy to really exert myself) but I do feel better and actually I'm sleeping better too. It just took awhile to kick in. Since Saturday, I've been giving myself daily shots of wheat grass too and I really think it helps. It's only a buck or two and even if its only a placebo effect, it's worth it. Back in my pre-cancer days I would blow a buck or two on some little snack from the vending machine or some treat during lunchtime like a cookie or something. I never bother with that now -- I'm barely hungry enough to eat a regular meal and am not exactly craving snacks -- so the wheat grass expense is nothing.

It's a good time to repeat how nice those chemo nurses are in my infusion room. At my last chemo, Cindy was my nurse and while she was starting my chemo, at my request, she sang a wonderful aria for me and Angela -- Cindy has been singing professionally for some time now and she has an amazing talent. Angela and I both had tears in our eyes from the beauty of the experience.

Another nurse named Lourdes came over and gave me a big hug and told me how nice it was to see me smiling again. Another nurse, Gail, also gave me a big hug and offered a book for me to read. It was a book about spirituality, so she approached the subject carefully but the whole thing was totally fine by me, I'm open to pretty much anything these days and I like that Gail was thinking about me. I think she was trying to find something besides medicine to give me some solace since she has seen me crying in the infusion room so much lately. I have a wide mix of religious and spiritual beliefs and am fine with someone suggesting something for me to take a look at provided that the someone is not some stranger on the street. My dad's sister Marilyn sent me a few books from her lifelong religion too--she is a Christian Scientist. Again, I'm sure there are some interesting things I can take away from all of this stuff.

In keeping with my "I'll try anything to get better or feel better" mode, I'm going to start chiropractic treatment on Monday. Even the phone call to set it up was a good experience. The person taking my call just happened to be there helping out the office, I don't think she was the regular appointment setter/receptionist person. I told her the names of my friends who referred me to the office and then gave her the briefest background about why I thought I needed to come in. She asked if she could take my phone number and call me back in a few minutes, which she did. When she called back she said that both chiropractors were willing to lower the price of the initial visit by about $60 since I was going to be a cash patient. They would also lower the price of the follow up visits if it was going to cause me any financial hardship. Then she told me that their two massage therapists each wanted to give me the gift of a one hour massage and she would coordinate it so that the massage was after the chiropractic session. How nice is that? These people don't know me at all and they extended such a warm welcome to me. The message I got from this organization is that their goal is to treat and heal people. Not just make money.

Namaste.

No, Comment

2005-05-14T18:27:00.000-07:00

This is a message to anyone who has commented on my blog; Thanks, and, more please. It feels good to know people are reading this and it feels even better to know that my random thoughts and comments help people relate to their own lives in some minor way.

Yesterday I had to have a blood transfusion because my red blood cell count was dangerously low--that explains the falling asleep at stoplights, eh? It was only the second time since treatment but I think my body is getting beat up after 14 months of relentless drug abuse (chemo) and I think more transfusions are in my future. It took a long time: I was at the hospital from 1-7pm getting two units of blood from some nice people who donated in different states (AZ and Iowa, I think). I don't know why the blood wasn't from San Diego? We have blood drives here all the time and I'm not an uncommon blood type: I'm A+. Anyway, first you get "typed and matched" even if you already know your blood type and it takes about an hour and a half. Then the transfusion itself takes a long time too.

My friend Fretz went with me. He is a good guy and a good sport. I'm sure it was boring as hell to sit there 6 hours, especially since I was falling asleep off and on during the treatment. Fretz literally read every magazine they had it the room. He also had to watch me cry as the nurse attempted and failed to get my port to work for her. After three tries, I told her to forget the port and to use a vein. I don't know why its so hard to use this port thing for some medical people. It's supposed to be extra easy, that is the whole point of this little device...easy vein access.

I'm seeing my oncologist on Monday to discuss ways of shrinking the lung bad guys so that they will interfere less with my breathing and maybe even quit causing me so much pain. I think there might be more than just chemo to work on this--I vaguely remember reading about a technique called ablation therapy where the radiologist basically burns the tumors/nodules with a special tool and it can be done in an outpatient setting.

I'm not feeling too chatty so I'll end today's post. Remember, comment anytime.

Birthday #39 and other things

2005-05-11T17:28:00.000-07:00

Amazingly, I've made it to birthday #39. I'm not even counting cancer when I make this comment about myself. I'm made plenty of ridiculous decisions about my health and welfare and to be honest, some of those decisions ought to have taken me off this green planet years ago. And yet here I am at 39, battling a fierce apponent who will simply not leave me alone.

Birthday #39 was really nice. I asked for a birthday party and Dan and Angela put it together in about a week. It gave me a warm fuzzy feeling that I haven't had for a long time and it again made me remember how lucky I am to have such nice family and friends. Alot of my friends gave me clothes, which is especially nice since most of my "regular" stuff hangs on me and looks pretty bad. I guess thats what happens when you go from a size 6 to a size 1 in a month or two. I got some cute silver earrings, some wonderful candles and bath stuff, and a whole lot more. It was fun to open presents like a little kid. Originally I wanted the them of this birthday to be One Year, Still Here. I think I even made a blog entry with this title? Anyway, Angela thought it was a little depressing so we didn't go with it.

On Saturday, Dan and I went to go get my engagement ring reset. It was a cathedral setting with a princess cut diamond. I really liked it but for some reason, even though we asked for white gold, it came back as yellow gold, which I rarely wear. And the setting was so high and sharp, I was always afraid I would gouge the baby's tender little head with it, so once she was born I put the ring away. But the ring means alot to me and I want to wear it again so it's getting reset to something more smooth and modern looking. A pressure setting in white gold. It ought to be ready in a week or so, as soon as we approve the wax mold they made of the new setting.

So you can probably tell that I'm down today. Cancer does that, you have ups and downs that are more pronounced than your pre-cancer days. I'm sad because it's in my face that I'm not wonderwoman and I can't do it all like I want. I'm worried that if I have to keep missing work from being tired from chemo, I will lose my job. I don't know enough about the laws that protect people with chronic illnesses or disabilities. I understand that my employer has work that needs to be done and it would be hard to blame them if they wanted to let me go and hire someone healthy. I want to be that healthy person again and I'm trying so hard. If only the cancer would leave me alone for good.

I started the new chemo this week, Navelbine. Luckily it isn't making me sick or nauseaous but it is making me soooo tired that it's dangerous for me to drive sometimes and its hard to predict when that will happen. There's just something about getting into the car that makes me extra sleepy, kind of the same reasons babies fall asleep in their carseats. On my way into work today, I fell asleep for a second or two while waiting at a stoplight. I rested my head on the steering wheel and seconds later, cars were honking at me to get going. It was then that I decided I should probably not drive into work today and that my body was sending me a clear message: you need more sleep.

I've missed so much work lately, I'm starting to worry about my job. If I'm not too tired, then my back and shoulders hurt from cancer and referred pain. My employer is getting me a new chair to help with my comfort in the office but the ordering process is not going smoothly and here it is one week later and no chair. Anyway, I missed all of Monday, worked about 5 hours Tuesday and today is Wednesday, the day I fell asleep at the stoplight and then decided to go home to sleep some more.

The really crappy thing is that this chemo is given weekly, so I will feel like this (or worse) for two months at a minimum...and if the treatment is working, probably more like 6 months. Today I wrote my boss an email about re-addressing the topic of working from home. I'm all set up to do it but he has not agreed to it when I asked in the past. I'm not sure if this is a University policy, a department policy or one that the IT director enforces herself. I need to know who to talk to about it. It just seems dumb that I'm home ready to work for 6 out of 8 hours in a workday. And surely it would cost them more to hire a temp to do my work? It would be so easy to track if I was "really" working since we have a content management system for our websites. I know most companies think if you're working from home, then you're probably not really working. Working means alot to me. Not because I'm some crazy workaholic...but work means a bunch of different things to me. It means I'm still ok enough to keep a job. It means money. It means health benefits. It means something to distract me from all the medical garbage in my life.

It sucks to be tired in the daytime and wide awake at night, too. Insomnia is no fun. Sometimes I'm awake because I'm scared and I don't know where this cancer thing is going to take me. Sometimes I'm just uncomfortable from back and shoulder pain and laying down in bed hits all the places that hurt. I feel like an old lady with these complaints.

Getting By

2005-05-01T17:34:00.000-07:00

Yesterday my family and I went to a birthday party for our friends' son who was turning 5. At the party was a sweet 9 month old baby girl named Emily. I was absolutely taken with her, and I must have played with her for a couple of hours. It was so much fun, I just loved her--she was just starting to crawl and she was a nice mellow little soul, not fussy or difficult but also not quite as active as Jennifer.

Towards the ends of the day, I was chatting with Emily's mom and I mentioned to her that I really feel like I missed out on getting to know my own baby at that age...it just sort of dawned on me during our conversation that I pretty much missed Jen at 9 months because that was right around the time of my mastectomy surgery, so I was both stressed (before) and then drugged out (after) for at least 3 weeks. When I used the words "missed out" to Emily's mom, she asked why (of course) and I told her I had been in treatment for breast cancer since Jen was about three months old. Since I didn't elaborate much, she didn't really understand how serious my condition is or that not everyone survives for years after a diagnosis. She asked if I thought I'd have any more children and she seemed surprised when I told her I probably couldn't, between all the chemo drugs and me turning 39 in about a week. I'm sure she doesn't know that chemo can make a woman sterile (why should she have to know that?) and I'll just assume she didn't think I was nearly 39?

Later that night I was in the bathtub feeling sad and crying about all the time I'm missing with Jen (and the rest of my family) because of cancer treatment of one kind or another. It really sucks. I hope this new chemo will kill the cancer and let me have some sort of life during the treatment...what's the point of being alive if I'm too tired to do anything? Or in pain from surgery? Or sick from treatment.

This week I received two really nice cards/gifts from friends, and my continually generous sister let me chose my own birthday gift so that's on the way too. And something from my Aunt Angie too, another continually generous family member. From Linz, some gift certificates to Cold Stone to help fatten me up (I'm 113 lbs and a girls size 16 right now). From Kelly Mc, a big check to buy some takeout when the mood strikes me and when I don't feel like cooking. From my sister Vikki, a Palm Pilot to help me keep all my apppointments straight, which is getting harder and harder all the time with my ever increasing medical crap to deal with. From Aunt Angie, a big check which I'm supposed to use for fun stuff for me but usually ends up mostly getting spent on bills and stuff (I'd say about 40% of it gets to go to "fun stuff"--I wish it was more but when I'm working less, we have less money...)

Hank and JoAnne are planning to visit us in early June, which will be nice. We haven't had much time together since they were here in September to help after my mastectomy surgery and I didn't really get to enjoy them since I was feeling crappy for most of their visit. Angela said they could stay in her guestroom which will really help out--she only lives about 10 minutes away and this will allow H + J to stay a bit longer since they won't have a giant hotel tab to deal with. In all likelihood, I'll still be working part time since I'm sure to be going thru chemo of one kind or another. I start the new chemo drug Navelbine on May 9, I have to ask the onco how many treatments he wants me to have before I get another CT. Unlike other treatments I've tired, Navelbine is given 1x weekly. Maybe it will kick my ass, maybe it won't. There's only one way to find out. But if it does kick my ass, I don't know if that also means it will make me tired every weekend (I'll get the treatment on Mondays). I sure hope not.

My mom has been asking to visit for awhile now and I don't really know what to do about that. She needs to stay with us since she is on a very tight budget. Our place is small and my mom is used to living alone and of course there's more that just that to think about. I know its time to let my mom come out again, at least for a weekend, she hasn't seen Jennifer since Jen was 2 months old. Our last visit was ok but she did her usual thing and tried to pick a fight at the end and it was dramatic overall. I just don't have the energy for that. I wish I could talk to her and tell her that if she can hold it together and be positive and help out and not make more work for us (Dan) then she can come. Most of the time when she asks about visiting, she just says she wants to come see Jen, not help us. Occasionally she rephrases so that it sounds like she would try to help us out. I don't think she knows how.

BTW, I've never told my mom I keep this blog and I hope she doesn't stumble onto it, she'll probably not like what she reads. I've never been able to have a conversation with her to try to straighten out all the years of drama and conflict she has created in our family--she just isn't up to facing it. Part of dealing with cancer is trying to tie up loose ends just in case...I don't think I'll be able to do that directly with my mom. Instead, I do that by talking to my therapist. As my sister aptly said in an email (I hope I don't misquote): Our mother has re-written our family history a hundred times in her head and she no longer really knows what really happened. In the past, when I've tried to talk to my mom about incidents in order to resolve them for myself, she doesn't remember them at all or pretends it happened totally differently. It makes me feel like I'm going crazy.

I try my best to take my mom for what she is and what she can offer. I also try to limit my contact with her, both on the phone and in person because it isn't healthy for me. I know I need to see her soon and I'm trying to get myself ready for that. I look so different than when she last saw me, and she doesn't really listen when I tell her about treatment or its results so she is sure to be shocked at the difference.

The Hokey Pokey Chemo

2005-04-28T19:57:00.000-07:00

I was just chatting with my friend Linz on IM today about my latest chemo tragedy. The Vanderbilt Regimen of chemo has done nothing to shrink the bad guys in my lungs, so it isn't working. I've had two treatments/rounds and it should have had some impact but it didn't. I told Linz that I go into each kind of new chemo thinking it might be the Magic Bullet to Turn it All Around...and that's What it's All About.

So, next on my tour of all chemo drugs known to mankind is Navelbine. Will it be The Hokey Pokey Chemo that kills cancer dead? We'll see. I haven't asked my oncologist how many treatments we will try before putting me back in the CT scan to check on the bad guys in my lungs. Navelbine is a weekly 3o minute IV drip. It actually sounds alot less bad then the side effects I endured from Vanderbilt Regimen. I mean, I'm totally willing to take an ass kicking to kill cancer with chemo but if the drugs aren't working it sure isn't worth it to feel so bad.

In other news, I have a fractured rib that apparently is an unfortunate result of my pleurodesis surgery. I have had loads of xrays between surgery and now but only the CT scan picked it up. In a way, I feel sort of vindicated because I still have so much surgery site pain and I didn't think I should. But heck, if a rib is fractured right in between both incisions, then it all makes sense.

My birthday is coming up on May 7, and my wedding anniversary is May 5. With all the crap going on with my health, I keep thinking, is this my last birthday? Since finding out about the spread of breat cancer tumors to my lungs, the words "poor prognosis" have been used to describe my condition--one doctor, one assistant and my malpractice lawyer have all used it, although god bless him, my own oncologist has the senstivity not to use those morale-defying word in my presence.

It might be hard to tell but I'm actually feeling better today both emotionally and physically. I even spent about 6 hours at work. I'm going to go to work again tomorrow, I think its good for me, and of course, I need the money. I don't know what I'll do if I get to the point where I am too sick/tired/whatever to work. I have adult-sized expenses and I don't think disability pay lasts forever. Remind me to look into that...what exactly happens to people who become chronically ill and have to stop working? Are they the homeless I see? Do they live on the couch at a relative's house? It seems worth researching.

Medical Hallucinations

2005-04-12T10:51:00.000-07:00

I mentioned earlier that while in the hospital, the pain medicine made me hallucinate. Here are some of the things I remember:

The crab
I am walking out a blue door that goes out to the beach. The sand is bright white, the sky is gorgeous and sunny. As I walk out the door, there is a tiny red hermit crab that follows me. As it walks, one of it's claws gets bigger and bigger until the claw is the size of a Maine lobster.

The cookie
There is an oatmeal cookie on the kitchen counter. The counter is white and clean. In a few seconds, the cookie is covered with bugs that would make a Fear Factor person go weak in the knees.

Visitors
I am in my hospital bed. My friend Tina is in the chair next to me (for real). Then a huge family files in and sits down, including right on top of Tina in her chair. The family is speaking Spanish and is not there to see me. I actually have to open my eyes to see that my room is empty and this is not happening.

The Morphing Patient
There is a nest, a large one with fuzzy white stuff around the edges. It is big enough for a grown adult to sleep in. Suddenly a patient appears within the nest. And as this patients stretches arms upward, it quickly morphs into at least 4 other patients with different scars from surgery, different hair and skin colors and more. Then the nest is empty again.

Above and Beyond the Call

2005-04-12T10:30:00.000-07:00

Since I had surgery, I have really been useless around the house helping with the baby, cooking, general housework. We are lucky that several friends have stepped up to the plate and offered us absolutely amazing assistance. Please read about our angels, I feel so incredibly blessed to know these people.

Bubba and Mandy: Dan knows Bubba from BUD/s training years ago (pre-SEAL training). We ran into him at the grocery store back in December '04 and had him over for dinner on Christmas Eve because his wife was out of town doing medical training. Since then, this couple has done everything under the sun for us: grocery shopping, dog walking, cooking, tons of babysitting, transportation of Veronica to school and afterschool activities, driving me to medical appointments...you name it, they have done it.

Angela: Continues to be a huge help in so many ways. Has done pretty much anything you can think of for me, the list would just be too long. And she spent tons of time with me while I was in the hospital too, even spending the night in the most uncomfortable reclining chair. She is such a nurturing person, I really thank my lucky stars that she is my friend. She makes this whole thing easier to bear.

Susan: Helps with the girls. Babysits, picks up from daycare, drives me to appointments, and is just a good, positive energy force.

Tina: Cooks for us, will come to help with the kids, came and visited me at the hospital and at home while I was recovering, and is just a warm, wonderful and nurturing person.

Mark and Alyce: Visted me in the hospital, cheered me up, brought me pizza because I couldn't eat the nasty hospital food.

Jerome: Visted me in the hospital, helped with our broken computer, brought me his portable DVD player so I could watch movies in the hospital and at home while in bed resting. He is just a good positive person to talk to.

I also want to mention that Dan has just been a rock in all this. Plus, he does all our laundry, grocery shops, keeps the house neat, and does everything for Jennifer and Veronica and me, and is a wonderful husband.

Edited: In a huge oversight, I was interrupted while writing this and I did not mention my sister's part in my recovery on the first draft of this. Very pathetic of me, considering she flew out from NY to San Diego on short notice and stayed for 6 days, slept in the hospital to keep me company, did laundry for my family, made food, brought me medicine, paid my bills and did a host of other things that I was too drugged up to even know about. She is a shining star and I wish I had not neglected to add her story to this. I feel so crappy for not getting it on the first try.

Catching up

2005-04-12T10:00:00.000-07:00

It's been a while since I posted anything. Funny how surgery can just turn your whole life upside down. Things never really settle back to where they were either.

On March 11 I had Pleurodesis surgery. To say it was hard or trying or difficult does not even cover it. I spent 24 hours in the CICU, mostly for pain management. The patient in the next room was having a rough night and coded twice in two hours, leaving me with a new phobia of loud dinging machines sounding the warning that all is not well. Directly after surgery, I had tubes coming out of everywhere. Dan and Angela stayed with me all night as I faded in and out of consciousness.

My pain was managed really well, even if I did hallucinate fairly often on the drugs--that it worth its own blog entry. I had an epidural with a timed morphine drip and it stayed in place from Friday (surgery) until Monday morning when the doctor and nurses were getting me ready to go home for Tuesday. I actually cried when they removed the epidural...not because it hurt to remove it, but because it was working so well and I didn't want to feel the pain.

The first meds to control the pain didn't work at all. I think they were giving me percoset and something else. The percoset would stop working about 40 minutes before I was allowed another dose. The pain would start like a low throb in my side...hospitals like you to give a number for pain, so mine would start at a 3, but would rocket into a 10 within 15 minutes, leaving me crying. After two times of that experience, I started calling the nurse earlier to try to head it off but it didn't always work. She would come in and give me demerol in this special IV thing they put in my neck. The first dose of demerol was too high and I pretty much left the solar system but boy did it make the pain go away too. After that, I asked for less so that I could stay somewhat coherent. I could see making friends with demerol for the long haul, it really makes everything go away. In all my recent experience with Rx drugs, it is the only one I could see developing an addiction to, and I have had quite a few come my way---morphine, vicodin, darvocet, percocet, etc.

I was taking pain medicine around the clock on a set schedule for my first two weeks home. Or maybe it was the first three weeks, everything is so sketchy in my brain as far as the real timeline of things. I started to back off the pain meds when I started chemo because the pain meds were making my appetite stay away and I was actually getting too thin...thin enough so that in the hospital, my surgeon was actually making comments about me eating a whole chocolate torte and how that would be good therapy for me. When's the last time you heard a cardiologist say such a thing?

I actually had to take appetite stimulant. What kind of Italian am I to need such a thing? As a woman, I have eaten hundreds if not thousands of times when I was not hungry but it is impossible to eat without your appetite. I am the smallest/thinnest I have been since high school. Maybe middle school. I feel like they gave me someone else's body before I left the hospital. The weight loss was so rapid that even I can notice how different I look.

I started chemo three weeks after surgery and it kicked my ass back to the stone age. I was really sick and nauseated, and I even vomited in the infusion room. In my year of being in the infusion room, I never saw anyone do that! It took me about ten days to feel normal again and since then I have felt better and better every day.

At my post op appointment with the surgeon, I learned that I now have fluid developing on my left side of the lungs. I'm not sure what will be done about that, but it is the reason I'm still winded going upstairs. On an up note, my right side has healed beautifully and my incisions are all closed up. I do still have surgery site pain, but its getting easier to deal with.

Deja Vu

2005-03-01T13:48:00.000-08:00

I'm not French so if I spelled that wrong, get over it.

Today I went wig shopping with cancer survivor and good friend Angela. It wasn't fun the first time (for wig shopping) and it was even less fun the second time. I didn't buy anything because I'm not 100% sure I'll lose my hair, although the odds are not in my favor. I wanted something cute and short, a la Halle Berry but all the short styles look like what my stepmom calls Condo Hair. Condo Hair is sort of older woman styled hair-- every hair in place and just a bit too much.

There were a few short-ish styles that were ok. I have a small head and face so too much hair makes me look like a caveman. Stop laughing, it's true. Anyway the salewoman at the store assured me that they can trim out alot of the extra hair. I already know this because I have two wigs at home. As that thought flashed through my head, my eyes started tearing. God damn it, I don't want to wear stuff on my head again. I just want my own hair already. This is such bullshit.

Tomorrow is my first chemo on the Vanderbilt Regimen. The drugs are Mitoantrone, 5-FU and Leucovorin which is actually more like a vitamin and less like a drug. It somehow makes 5-FU work better.

I'm planning a different approach for this chemo. I'm going to take more supplements (pre-cleared by my oncologist of course) and I'm going to force myself to exercise on the days I feel ok. I'm going to try to find myself a nutritionist and will attempt to eat better (at this point I just need to attempt to eat...I am so stressed that my appetite has vanished). I also want to incorporate some acupuncture and Reiki into my treatment. Reiki is provided by the social worker who is on site at the infusion room. The acupuncture will be on my tab. I love my acupuncturist but she has gotten so busy that I don't think she has time to see me anymore. I'm going to see if she has anyone she recommends.

I am dreaming about running. Running as in jogging, exercising, sprinting. Not running away. I feel like if I can run really hard, maybe I can blow out those stupid nodules in my lungs. I would like to burn them out of my lungs, which, actually is a possiblity. My oncologist mentioned something called ablation therapy. I need to look into that.

Until then, cross your fingers, eyes and toes that The Vanderbilt Regimen makes my cancer die so that I can go on with my life and finally put this behind me. I will get two rounds and then my oncologist will give me a new CT scan to see if those nodules are going away.

It's cancer

2005-02-26T21:18:00.000-08:00

That's all I can think of to write. It's back. It might not ever go away. Fuck. I don't want to live with cancer. I want to live without cancer.

I start chemo again on Wednesday. I have only had about a one month break from the last chemo. If this is what my life is going to be like, on chemo, off chemo, on chemo, off chemo I can't say I am all that interested in jumping aboard.

I look at my sweet baby and I think, it I die while she is still so little, will she even remember me? I'm glad I picked a man who is a wonderful dad just in case he has to raise her alone. I'm going to be speaking to a malpractice attorney next week...if something happens to me, I have to make sure my family is covered: Dan will need money to live in a nice place where the schools are good, he will need help at our house taking care of general things, and the girls will need money for college. If i lose my job I will need money to maintain health insurance.

I'm looking at the sky and asking for the strength courage to go through this all over again. I sure don't have it right now.

My friends have all responded in just the way I would want them to. They are supportive and empathetic. I'm a lucky person to have so many wonderful people in my life.

If I could just play the Jaws themesong here you would understand how I feel today

2005-02-23T10:46:00.000-08:00

I've been checking myself obsessively since I was diagnosed with breast cancer. I check the "good" breast, I check the place where the "bad" one used to be, and I check all the places I've noticed that the oncologist checks when he examines me.

Since this mystery fluid on/in my lungs, I have stepped up my obsessive checking of my body, trying to find some clue as to what the hell is going on.

Truthfully, it's hard to know what I'm touching when I check the area of the mastectomy. It's bony and there isn't much there besides skin, bones and a little bit of muscle and a thin line of scar tissue. So imagine my surprise when I found a tiny bump under the incision scar . It is tiny, yes--maybe as small as the eraser on the end of a pencil and smaller than a jellybean. But it does not belong there though and it wasn't there before. And feeling it there sent a wave of panic through me that I think you might feel if you were swimming in the ocean and felt a shark bump into you.

I called the oncologist the same morning I found the mystery bump. He told me to come right into the office, he would fit me in at around noon. I showed him the new intruder and I could see by the look on his face that this was exactly the sort of thing he was trying to find to explain the fluid in my lungs. In the past weeks he has been examining my chest and rib cage meticulously and said that sometimes these little bumps show up right under the skin.

He asked me who I wanted to see to take it out. He offered up my primary care doc, a dermatologist, one of the surgeons from my HMO med group, or Dr. Wallace, the doc who did my mastectomy. I immediately asked for Dr. Wallace. My onco said that she can be hard to get into see on short notice but he would call her right then and see if she would get me in. He left the room and made his phone call. I guess he was convincing because I'm seeing Dr. Wallace today at noon in her office so she can remove this thing of evil and get it under the microscope. Results should be back by Thursday or Friday and then based on the finding, we will discuss options on how to treat. And if by some stroke of luck it is not cancer, then we will keep looking for the reason I have fluid in my lungs.

I asked Dr. Shiftan how this little bump could cause fluid to develop in my lungs. When it comes to understandable explanations for his patients, he is wonderful this way. He did his best to explain, but I have to admit I had already checked out mentally because of the panic rapidly setting in about this lump. From what I remember, he said that since the lump is right under the surface of the skin, it has access to my lymph system and this may (insert precise medical explanation here) in turn cause the fluid to develop.

I'm looking for a calm state of mind to handle this. It is no where to be found. I'm crying easily because I am again terrified. I'm not sleeping because my back muscles hurt because of the fluid in/on my lung pressing against it and I bet the stress of a possible cancer recurrence is adding to the mess back there. My dad says talk to yourself, try to keep yourself calm. Worrying doesn't help. And while this makes perfect sense, I'm finding it impossible to implement.

Ativan with a splash of Vicodin anyone? I remember the days when I wouldn't even take aspirin for a headache. I long for the days when I knew my body was clean, healthy, prescription drug free and cancer free.

When will those days return? Haven't I had enough crap thrown at me already? Will I be able to make people stop saying I am brave or have a great attitude? Do they realize how much pressure it is to try to keep a strong face every day? I'm not brave, I'm terrified. I'm not strong, I'm shivering and crying like a coward. Let someone else be strong and brave for awhile. I'm out of reserves.

I have simple requests.I want to go one week without having to visit a medical professional or having a needle or tube stuck in me somewhere. I want to be healthy. I want to see my little baby girl grow up and have babies of her own. I want to be a good mom to my stepdaughter because her own mom can't or won't handle the job. I want to grow old with my husband.

The waiting is the worst. I really do think it is worse than the treatment.

If life is a rollercoaster...

2005-02-16T09:42:00.000-08:00

If life is a rollercoaster, then my mine is the kind that goes upside down and thru dark tunnels only to slow down briefly so you can look at the blue sky of the amusement park and take a deep breath. But just when you think the ride is over, you start going backwards to do it all over again with a different perspective.

First order of business...the head chemo nurse (Joan) at my oncology infusion room is a devoted and kind woman who clearly understands the stress of a partial diagnosis and the meltdown is has caused for me. My oncologist was out of town and she tracked him to Costa Rica via his friend's cell phone. She told him what was going on and he ordered another thoracentesis for me and had her schedule me to see him on 2/17/05 so he can review my CT scan himself and decide what he wants to do from there. The chemo nurse told me that she feels the ER doctor who gave me the news about the 4 nodules on my lung was irresponsible by telling me...she feels that those results should only have come from my own oncologist, even if it meant I had to wait a couple of days.

Nurse Joan also said that at this time, they are still unlocking the puzzle of the nodules and the fluid in the pleural wall. It would be more typical if the fluid results showed either cancerous cells or infection but the fluid analysis they got the first time was benign and sterile. She said she understands why I am assuming the nodules are cancer but to just wait and see...that there is still a possibility that they are caused by something else, an infection that is not showing up in the fluid, or that they are unrelated to my breast cancer. She said a biopsy of one or all of them is probably the way they will need to find out. I was thinking to myself, I hope they don't just take a little piece...I want them to cut those suckers the hell out of me.

Per my oncologist, yesterday I had another thoracentesis and they are going to reanalyze the fluid (it looked the same as before to me). I dosed myself nicely with xanax and vicodin (with the nurse joan's permission) so this time the procedure wasn't quite as bad. I think the fluid has already returned again because I'm still not comfortable breathing deeply. I'm going to have an acupressure massage tonight at 6:30. Hopefully this will help my body heal itself and release that fluid.

I'm just trying to stay sane and keep focused on the parts of my life that are good. The stress is definitely getting to me. Now seems like a good time for a xanax.

High Anxiety

2005-02-14T13:30:00.000-08:00

I can't believe I'm in this terrible place again so soon. The fluid on my lungs is being caused by 4 nodules that are in the right lung. A CaT scan over the weekend finally pinpointed it. Metastatic disease in my lungs is really the only obvious possibility although I wouldn't want to rule out any less evil causes.

So far the only solace I have is that "nodules" is a term used when something is smaller than a "tumor" or a "mass." But 4 of them...not good. The worst part is that they were even able to grow at all since I have just completed so much chemo. If none of those drugs killed those suckers, what will?

My oncologist is out of town until Wednesday. I can't stay calm enough to leave a voicemail with anyone at his office to try to get some other doctor to step in and start ordering tests. (Once I try to explain what is going on, I start crying and then no one can understand me.) It's pathetic but true. My stepmom just offered to call the office for me and within minutes she is back with good results...the head onco nurse is now going to track down my onco and find out what he wants to do.

I remember from theinitial breast cancer diagnosis that the worst part of any bad news is not knowing what will come next and knowing that I have more tests to get and more results to wait for (this is why scientists invented xanax and ativan). Once tests are over and plans are in place, the emotional part starts to lessen. While treatment and surgery are crummy to go thru, they are at least attempts at steps towards evicting from my body the evilness of cancer.

Note to cancer cells in my body: you will not win. Leave now and we'll call a truce.

B9 (benign)

2005-02-10T16:08:00.000-08:00

This week has not been easy. I had to wait all weekend for results from a chest xray. Then I got the results (looks clear) which seemed good only to find out that the doc wanted more tests. On Monday afternoon I had the displeasure of undergoing a procedure called a thoracentesis.

Thoracentesis is where fluid is drained from lungs with a needle (tube?) and ultrasound guidance. I know! It already sounds like a party, right? Not. I asked the radiology nurse if I could be put out for it. She said no, but that of all their procedures, this one was among the least painful that they do. Knowing what I know now, if that is true then I suggest that other potential patients avoid radiology procedures from here on out.

Luckily my personal guardian angel (Angela) was able to come to the hospital to be with me for this latest medical challenge. She brought some Ativan with her which I happily took. (My smart sister Vikki suggested that I start carrying Ativan with me for last minute things like this and I will do so.) The doctor requested some lab work to make sure that my blood would clot once they "stuck me" (the nurse's words). This is called a PTT but I don't know what the acronym is represents. Anyway my PTT was not great but it was good enough. On with the show.

Unfortunately for me, the doctor would not let Angela go in with me for the actual procedure. I was wheeled in and asked to sit up and put my legs over the side of the exam table. The ultrasound tech located the pocket of fluid. It was then that the radiologist told me that there as a 10% chance that when they did this, my lung would temporarily collapse and they would need to put in a chest tube and keep me over night if that happened. Gee, thanks for the warning.

The entry point was through my back and by the lower part of my rib cage on the right side. I was numbed with two different novacaine injections that felt like wasps landing on me. After that, the radiologist explained that I would feel pressure while they went through the area by my ribs, but that I would feel it when he went through the Pleural wall because they couldn't numb that. The pleural wall resides between the lungs and the rib cage. Let me just say this... when the drain tube went through there, I felt it.

The medical staff kept saying things like you're doing great or she's tolerating this well (I hate that one because they say it as if I wasn't in there). I didn't feel like I was doing great or tolerating it well. Anyway, they drained out a liter of fluid (yes, a liter) and then sent it off to be analyzed. I took a look at it to see what my guess was at it's contents....I was afraid I'd see blood which seems to always be a sign of bad news. It wasn't bloody, just sort of cloudy, like cider or beer. I'm sure you are now rushing off for a big glass of one of those drinks. (Haha. Cancer patient humor.)

They told me it would take a few days for the results since the lab had to culture it. More stress of waiting for results...

The oncologist called me yesterday and told me that the fluid was benign but inconclusive for infection. When I hear that word, my mind gets weird and says to me B-9....bingo. Why? I have no idea. The oncologist is still not sounding happy but he's a cautious man and that's a good thing. So he wants to try to "knock this out the old fashioned way by using antibiotics" in case its an infection like pneumonia, which is not uncommon for a person to have if she is undergoing chemo or just finished. I will take Augmentin for a week, 3x per day.

The onco wants another CT scan in a day or so to see if the fluid has recurred. If it has, he may suggested a second thoracentesis. I think it goes without saying that I would rather have all my fingernails removed rather than repeat that, so let's hope the drugs work and make the fluid go away too.

In other news, I am kicking ass for Susan B. Komen 3-Day and have nearly reached my $2100 goal already, so I raised it up to $3100. My friends and family are doing a wonderful job forwarding my fundraising plea to their own circle of friends and it's really helping. Also, a co-worker from another workgroup sort of adopted my goal as one their department should take seriously and from that group I have already received over $700 in donations or promises to donate soon. I work with really nice people.

Fade Away and Radiate

2005-02-04T08:35:00.000-08:00

This is the title of an old song by Blondie. Anyone even remember that band? I loved them in high school. It seemed appropriate since I'll be writing about my radiation planning meeting, which was yesterday afternoon.

I went in thinking it was going to be no big deal. First I had a nice chat with Dr. Rosenthal, my radiation oncologist. I really like her. After that, I got changed into the exam gown and went into the room for my CT scan, which is used to help get proper position for the radiation treatment. The goal of this is for other technicians to mark me up so that each time I get a treatment, the machine(s) will be aimed at exactly the same areas every time.

So, there I am laying stretched out on this CT scan table with my arms all the way over my head and hands holding onto this bar. Not comfy but I'm thinking how long could this take? So after being in this position for what felt like 20 minutes, I started to complain. My fingers were tingling like they were falling asleep and the muscles around my shoulder blades were cramping up. The scientist/tech came out and moved my arms into a different position that was less uncomfortable but not by much. Five minutes later the muscles in my shoulders started twitching and I sort of whispered this sucks. The scientist/tech came out to find out what I said (there were taking notes in a room looking into mine with a big window). So I repeated my comment and then he says (and I know he thought this was funny) "I have old ladies who can hold their arms over their heads all day long." And I thought to myself, what a dickhead. But what I said out loud was, "welll maybe they aren't carrying around a 22lb toddler that makes their back muscles sore."

Anyway, the techs marked me up with a permanent marker in a number of different places and then made some tiny tattoo dots that will be mine forever. The tech said this might pinch a little and then she made the tattoo dots. Well I am no wimp about medical pain anymore but I have to say, this really hurt! I wish these people would just be honest and say this is going to hurt, I'm sorry instead of lying about it and then I'm surprised when the swear word comes flying out of my mouth because I get stuck or pinched or poked by one of these folks.

Then, to make my afternoon complete, the radiation oncologist comes out and tells me that there is some fluid in my lungs. She goes over the possibilities of why: possible trauma to the area during a period of time when my platelet count was low (during chemo), a lung infection like pneumonia, or, a tumor. She tells me she will call my oncologist right away to tell him so that he can order some tests.

My oncologist called me about an hour later saying he was going to order a chest xray with three views of the area, and that he wants the fluid drained and identified in the lab and also so that I'll feel better. He doesn't say anything about tumors but does ask me about past colds, allergies, fevers and the like.

I'll be very surprised if this fluid is cancer related. I've had chemo running through my veins for almost 9 months, with only about a 6 week break in between the two kinds of chemo I had. Still though, it sucks to be thinking that I may have more cancer to deal with. I hate that once a person has had a cancer diagnosis, things that are not much of a scare for a 'regular' person is a 4 alarm fire for me and whatever doctor is handling my care.

I remember about three weeks ago, I had a nasty sinus condition that seemed to be because of all the rain we were getting in CA. It made me have a nasty cough. After a particularly long coughing attack, I felt a pain in my right side. After that it hurt so much that if I started to sneeze, the pain of breathing in right before the sneeze would come would make the sneeze go away. A few days later the sharp pain went away and decided I had probably just pulled a muscle during the coughing fit.

My body used to be so healthy, I never had to go to the doctor because I always felt good. It's rather depressing to always have these nagging little things wrong now. I'm keeping an optimistic outlook as best I can...I think I'll enjoy good health again but first I have to get clear of all these doctors and treatment. To say that I can't wait for that day to come is an understatement.

Radiation treatment is set to start on 2/14/05 and should be over on 3/24/05.

Sanctuary

2005-02-03T13:51:00.000-08:00

Last night I attended a free spa night for breast cancer survivors at SK Sanctuary, a spa in La Jolla. SK Sanctuary is owned and operated by Dr. Steven Krant and his wife, Lynn. Dr. Krant (SK Clinic, La Jolla) is a plastic and reconstructive surgeon who, through his sensitivity, skill and dedication, helps his breast cancer patients feel whole again with his ability to replace some of what the disease takes away. The free spa night is open to all breast cancer survivors, not just those that are his patients.

I have mostly only been touched for medical treatment for the last 10 months: I have had two kinds of chemo, endless blood tests, many injections, and three surgeries. It was absolute bliss to be touched in a therapeutic and gentle way for a change-- I was the recipient of both a facial and a massage.

I've never had a facial before...I didn't realize that it was mostly like a massage for the face, completely with delicately scented scrubs, soaps and lotions and pleasantly hot and steamy towels. The aesthetician was thoughtful and talented and I left her care feeling a thousand times better than I had in many months.

Next was the massage. The massage therapist had worked on me once before, back in July 2004, when I first took part in SK's free spa night. She even remembered me which is quite amazing considering how different I looked in July '04...I was bald as a cue ball and15 lbs heavier, for one thing. Anyway, she asked me what areas needed her attention and with strength, skill and patience, she unwound the knots in the muscles in my shoulder blades that are a result of being unbalanced because of mastectomy. I wish I could visit her weekly!

An important part of SK's spa night is listening to the speakers who present before the spa treatments start. The first speaker was a photographer and journalist who was also a breast cancer survivor. She shared her book with the group and her words touched my heart so much that I cried. Next was a breast cancer survivor who performed a rap song about the experience--a good mix of humor and reality.

The other important part of SK's spa night is the experience of chatting with the other cancer survivors. Before cancer, I have to say that I almost always had some trouble relating to most other women. I was the type of person (at least when single) that had many more male friends than female friends. But there is something about the sisterhood of breast cancer that creates a fellowship that is unique and beautiful. Women I never met before last night came up and hugged me because they had seen me crying during the first speaker. I'm not talking about one or two...I'm talking about ten or fifteen. Most of us sat together in small groups discussing our experiences with chemo, other medicines, reconstruction and mastectomy. Nearly everyone had a good sense of humor about all the horrendous things that had happened once the cancer diagnosis had been handed down.

When I was first diagnosed with breast cancer I thought I'd be "back to my normal life" in about three months. This was because I had no idea what cancer and treatment was all about. Now I know that my idea of "normal" is forever changed.

Here's the Erma Bombeck piece that one of the speakers read to us. I liked it so much I made it my business to find it in the great big book of everything (the internet) so I could read it whenever I wanted.

"I would have talked less and listened more. I would have invited friends over to dinner even if the carpet was stained and the sofa faded.
I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.
I would have taken the time to listen to my grandfather ramble about his youth.
I would never have insisted the car windows be rolled up on a summer day because my hair had just been done.
I would have burned the pink candle sculpted like a rose before it melted in storage.
I would have sat on the lawn with my children and not worried about grass stains.
I would have cried and laughed less while watching television - and more while watching life.
I would have shared more of the responsibility carried by my husband.
I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.
I would never have bought anything just because it was practical, wouldn't show soil or was guaranteed to last a lifetime.
Instead of wishing away nine months of pregnancy, I'd have cherished every moment and realized that the wonderment growing inside me was the only chance in life to assist God in a miracle.
When my kids kissed me impetuously, I would never have said, "Later. Now go get washed up for dinner."
There would have been more "I love you's".. more "I'm sorrys"... but mostly, given another shot at life, I would seize every minute...look at it and really see it... live it...and never give it back."

My New Challenge: The Breast Cancer 3 Day

2005-01-24T11:32:00.000-08:00

3 Days, 60 miles of walking and 2 nights of camping out in a tent. I want to do this to prove to myself that there is life after cancer and that life includes the joy of physical exertion, setting goals and reaching them.

Yes, I've run a marathon (1998--Mayor's Midnight Run) and a three half marathons (1998-1999) but nothing recently. And to be honest, I really haven't worked out much since becoming pregnant with Jennifer in the early spring of 2003. I'm anxious to get myself back into shape again, it's been really hard not having any energy and I don't have any personal pride in my appearance right now.

The Susan B Komen 3 Day seemed just right for me. I would do anything I could to spare another woman from going through breast cancer treatment. The only way to do that is by raising money for research so those sharp minded medical people can find a cure for this.

I don't really know who is reading this blog but if it's not someone who knows me, then it's probably someone who has been touched in some way by cancer. Please help me raise money by donating. Click here to do so and please share this link with your friends and family.

Thanks.

Idiosyncratic Routine

2005-01-20T14:20:00.000-08:00

I stole today's title from the movie Chasing Amy.

I'm done with chemo. I guess it will take a while to sink in because I don't feel elated yet. Mostly I just feel tired and crappy from the last chemo, which was yesterday (1/19). It ought to take me about 5 days before I start to feel better, and then as time goes by, I ought to be getting my energy back more and more.

Energy. Feeling energetic. It's been so long! I went from pregnancy to child birth to caring for a newborn to cancer diagnosis, testing and then treatment.

I still have radiation to complete. I'm hoping it's not too bad. I hear it isn't. The bad part of radiation is how often the patient has to go to the doctor's office to get it...5 days a week for 28 sessions, in my case. I'll start on Feb 21, 2005.

Will I ever feel like my old self again? I think not. I have a new self now: she looks different, she acts different, she thinks different. The old self wasn't a bad person. But her priorities were different. Her self image was different. Better. The new self needs to work on that some more.

Right now all I can think about is sleeping— I want to go home and crawl into bed in the worst way. Unfortunately, it won't be possible to go to bed immediately. I have the kids on my own after work tonight because Dan has something he has to do. As soon as he gets home, I'll crash.

Signing off for now. I'm just too beat to be a creative writer today.

Redemption

2005-01-18T09:59:00.000-08:00

As I head into the final stretch of treatment, more and more I find myself thinking about reconstruction. For those of you who know me, I'm a planner. With HMOs and health insurance, this is a great trait to have because without prior authorization and approval, they don't pay for stuff.

After much research, I've decided on my reconstructive procedure. Now it's a matter of getting my dear friends at the health insurance company to agree to pay for it. I would like to be reconstructed via the GAP method and this procedure is only done by a small handful of doctors in the US. If you're curious about it, go to www.centerforrestoration.com and read up. There are before and after photos, too. Be warned: these are graphic photos since they show breasts and butts.

The wheels are in motion. Even though I could in theory have surgery as early as July (I need about 4 months in between my last radiation treatment and this surgery), I'm hoping for a surgery date in late October or early November. I'm doing the Susan B. Komen 3 Day which is Oct 14-16 and I don't want surgery messing up my training or event days.

Update August 5, 2005: Since orginally writing this entry, I have had metastisis to the lungs and bones and am no longer that concerned with reconstruction. First I need to be cancer free.

Other Items of Note:
My last chemo is tomorrow! I am super tired from treatment these days. I get out of breath climbing stairs and vertigo if I stand up too fast. I know this is because my red cell count is suffering from chemo and I know I'll start to feel better in a couple of weeks. Still, it doesn't make it any easier to get out of bed and have a decent day.

Baby Jen has a new word: bye-bye. Although it sounds more like bah-bowwwwwww and is accompanied by scrunchy handwaving. Totally cute. How much do I love this baby?!

To Anonymous, the only person to actually comment so far on this blog:
Thank you for reading. I will think about your 3 year old baby girl with leukemia often, and I'll think about what a dynamic person you must be to take care of 4 young children, especially with one who needs extra care. In 1998 I raised $4100 for Leukemia through Team in Training, and then ran a marathon in Alaska. Consider this my solemn promise to raise more money for leukemia in 2006. If you'll let me, you can give me the name of your baby and I'll run in her honor. Healing thoughts to your little one, and strength to you as you nurture her. In the same way I wish to dance at my baby's wedding, I hope the same for you. Namaste.

Protecting the Innocent

2005-01-07T13:53:00.000-08:00

At the risk of offending some of my more liberal-minded friends and readers, I'd like to applaud the ruling of a Family Court judge who recently took a very strict stance on a "mother" (and I use the term loosely) who had lost custody of her 7 children from seven different father, with the childrens' age ranging from 8 months to 12 years. The ACLU is already trying to get it reversed. I think it takes real courage for a judge to take a stand like this and try to protect the unborn from falling into such unfortunate circumstances.

The youngest child and two others tested positive for cocaine at birth and all seven "were removed from her care and custody because she could not and did not take care of them," Judge Marilyn O'Connor said in a December 22 decision made public Tuesday.

"Because every child born deserves a mother and a father, or at the very least a mother or a father, this court is once again taking this unusual step of ordering this biological mother to conceive no more children until she reclaims her children from foster care or other caretakers," O'Connor wrote. (quote courtesy AP and found on cnn.com--get the full story here)

Read it carefully. It doesn't say that the woman must be surgically sterilized or even that she have injections of a drug that would temporarily prevent her from becoming pregnant (which is actually my first choice for her penalty for being so careless with other human lives, but that's just me). Only that she must reclaim her children by cleaning up her act before she goes out and conceives more.

I don't understand why the ACLU values the rights of the mother over the rights of the potential offspring who would be born drug-addicted and/or abused and neglected. I have worked as a volunteer for the Juvenile Court and I have friends who still do...the things we have read in court documents or seen in person would make even the most liberal of you feel like you would want to protect the unborn, I just know it. Read this:

Guillermo, a newborn at Broward General Medical Center in Ft. Lauderdale, has spent his whole short life crying. He is jittery and goes into spasms when he is touched. His eyes don't focus. He can't stick out his tongue, or suck. Born a week ago to a cocaine addict, Guillermo is described by his doctors as an addict himself. Nearby, a baby named Paul lies motionless in an incubator, feeding tubes riddling his tiny body. He needs a respirator to breathe and a daily spinal tap to relieve fluid buildup on his brain. Only one month old, he has already suffered two strokes.

Guillermo and Paul are two heirs of America's deadly romance with cocaine. There are many more, and over the last couple of years their numbers have risen sharply. In 1984, for example, Dr. Xylina Bean of Martin Luther King Jr. General Hospital in Los Angeles saw just 10 newborns with traces of cocaine in their urine; last year that number rose to almost 100. By May of this year King had logged 180 babies born with cocaine in their systems.
It was just 2 1/2 years ago that the Perinatal Center for Chemical Dependence at Chicago's Northwestern Memorial Hospital began to see mothers with cocaine habits; today cocaine is a problem in a majority of the center's cases. In the last year the approximate number of drug-addicted mothers seen at New York's Bronx-Lebanon Hospital Center has risen from 70 to 150; the number of cocaine users in that group has jumped from 25 to 75 percent. (1986, courtesy of Newsweek)

What is wrong with the checks and balances of ________ (insert your religious icon here) that allows a deadbeat like this woman to get pregnant so easily even while she takes illegal drugs when I personally know of wonderful women who have carefully watched every single item in their diet and are still unable to have a child of her own? What about me and my friends who have had chemo and may or may not be able to have children (or in my case, another child) because of the effects?

Little Star

2005-01-04T14:04:00.000-08:00

Yesterday, when I went to pick up my babygirl Jennifer at daycare, she did something new that completely melted my heart: she saw me, smiled her biggest smile, held out her arms and toddled over to me as fast as her little legs would carry her.

I remember something that happened at the daycare early on, when Jennifer was just a few months old...I was walking thru the playground area and kids were playing on both sides of the fenced in area. There was another mom walking in behind me, and when that mom's little girl saw her, she screamed "mommy!!" and ran over to the fence to get as close to her mom as she could. And I thought, I can't wait until Jennifer can show me that she's that happy to see me.

A newborn baby that isn't talking/walking/crawling yet can show you in a lot of other smaller ways that she's happy to see her mom (or someone she loves). For instance, she might stop crying when you pick her up, or she might smile a gummy little smile for you. Or she might lay her head on your shoulder and fall asleep. Jennifer has done all of those things for me and her daddy but yesterday's new development really made me feel great.

Never forget who you are
Little star
Never forget how to dream
Butterfly

God gave a present to me
Made of flesh and bones
My life, my soul
You make my spirit whole

Never forget who you are
Little star
Shining brighter than all the stars in the sky
Never forget how to dream
Butterfly
Never forget where you come from
From love

You are a treasure to me
You are my star
You breathe new life
Into my broken heart

Never forget who you are
Little star
Never forget how to dream
Butterfly

May the angels protect you
And sadness forget you
Little star

There's no reason to weep
Lay your head down to sleep
Little star

May goodness surround you
My love I have found you
Little star

Shining bright

You breathe new life
Into my broken heart

Never forget who you are
Little star
Shining brighter than all the stars in the sky

Never forget how to dream
Butterfly
Flying higher than all the birds in the sky

Never forget who you are
Little star
Never forget where you come from
From love

Thanks to Madonna, who wrote this song. She really said it just right.

Natural Disasters

2005-01-03T13:19:00.000-08:00

During my blogging break, the Earth suffered a terrible loss of human life. I'm mostly speechless about words to use to describe how it makes me feel. That so many souls left the planet at the same time has me wondering what sort of karmic energy blast might have occured that simple people like you and me can't possibly perceive.

One of the stranger things about the tsunami is that rescue crews have not found any dead animals. What does that mean? Did the animals have a good early warning system that made them flee so far inland that they were all safe? Or did those animals just get swept out to sea only to sink to the bottom of the ocean?

I feel incredible sorrow for any parent who has lost a child. I can not imagine the pain.

The suddenness of it all reminds me that quite possibly, today might be the last day here for any of us. When I write "here" I mean here on Earth. Every once in a while, Mother Nature shakes her coat like a dog with fleas and people die. I spent alot of time in 2004 worrying about cancer. I'll probably spend more time worrying about it in 2005 but a big disaster like the tsunami of 2004 might help me keep my perspective.

~~~~~~~~~~~~~~~~~~~~~~

One other thing I wanted to write about...I was talking to Dan last week and he mentioned that while I was in the hospital for my mastectomy surgery, there was always someone (Dan, JoAnne or Dad) in the room with me because he never wanted me to wake up alone and scared. I actually didn't realize that since I was so out of it. But hearing it made me want to cry simply from gratitude. He is such a good man.

On the subject of chemo countdown? I have two more treatments to go. The treatments are getting harder to deal with: I'm more tired and out of sorts for each one. This last one took me about 5 days to get to a place where I felt ok. I slept alot during the holiday break--I just didn't have much energy and frankly, I still don't have much now.

Once chemo is over, I'll get a three week break and then I start the final kind of treatment: radiation. I have 28 sessions and I'll have to go 5 days a week.

Practicing Medicine

2004-12-21T11:44:00.000-08:00

Ever wonder why your doctor's office calls itself a medical practice? It's because all doctors are still practicing medicine, because in a lot of situations, there is no one right answer.

My most recent example -- although I have many stories now -- is on the topic of reconstruction of the breast. Before I get started with my story, let's get everyone who is uncomfortable with the word "breast" more settled. Breast, breast, breast! I used to fidget when I had to say it out loud too, but I have to say it so many times each day that I don't even blink now.

Ok, so, we were talking about breast reconstruction. There are many ways to accomplish this, but there are reasons why a person might choose a particular method. The simplest and least invasive way of reconstructing a breast is to use something called a tissue expander. Basically, a plastic surgeon creates a pocket in the patient's sub-pectoral muscle and inserts this thing that is alot like a balloon, only it holds sterile saline solution and it can be filled slowly through these little holes in it called ports. The plastic surgeon slowly fills it up to the desired size of the breast cup (A, B, C etc) and then overfills it to create some extra skin. The fill-up process is called "expansion." When expansion is complete, there is a second surgery to swap the expander for an implant. Often during this surgery, the plastic surgeon will also make some alterations to the "good" breast to make it match the newly reconstructed breast which is full and perky. Alterations to the good breast might include adding an implant or giving it a "lift" which is called mammoplasty (or maybe it's mastoplexy, I forget).

Here's where we get into the area of medical practice versus medical science; if a patient is going to have to have radiation to the chest wall after her mastectomy and chemotherapy, then many plastic surgeons and radiation oncologists do not recommend that a patient uses a tissue expander/implant as her reconstructive method. Why not? Well, in some cases, scar tissue will form in an area where radiation has occurred and it can cause complications with an implant. Also, radiation tends to damage skin and makes it lose some of its ability to stretch the way it needs to in order to accomodate the tissue expander.

But...some doctors will tell you that if you get fully expanded and then get radiation, it can alleviate some of the problems. Today, that's what my radiation oncologist suggested when I told her I was hoping to have the simplest method of reconstruction. So now I'm heading back to see the plastic surgeon I liked back in April...we'll see what he has to say. The other thing for me (and the plastic surgeon) to consider is whether or not I have enough sub-pectoral muscle to create the "pocket" for the tissue expander to go in. This is because my oncological surgeon had to remove some of it in order to get clear margins, that is, get all the cancer along with a little bit of healthy tissue.

If the tissue expander method will not work for me, then I have a few other options but they are all fairly involved. The other methods are called "flap" procedures. Sounds gross doesn't it? A "flap" is just that, a flap of skin, fat, tissue and sometimes muscle that is moved from one place on the body -- called a donor site -- and then transplanted to the chest area to form the new breast. Flaps can come from the patient's lower abdomen, her latissimus dorsi (upper lateral back) or the gluteal area. The best donor site varies from patient to patient and mostly that has to do with body type and weight.

A patient like myself who does not much extra flab in the abdomen area can pretty much cross off that area as a donor site. When skin, muscle, tissue and fat is used, this method is called the TRAM flap. When no muscle is taken but skin and tissue are, that method is called DIEP flap. Both also result in a tummy tuck for the patient, which I guess some women love.

The lat flap takes skin, muscle and tissue-- and has its own good and bad points but mostly I don't see it as a good choice for me...I have a one year old baby I want to pick up and hold and it doesn't seem like a good idea to lose muscle strength there. Also, it will create a 6-7" scar across my back. I already have two new scars this year...one from the c-section and one from the mastectomy. I'm not really interested in having a new scar in such a highly visible area. The one good point about the lat flap is that is seems to be pretty reliable as far as its success rate.

The gluteal flap, called a GAP or S-GAP takes skin and fat from the butt and moves it up to the chest to create a breast. That sounds pretty good to me because it also results in liposculpture to the butt. However, the recovery is long and the fail rate is high. That means that in as much as 20% of the time, it results in flap death. This is because the artery that feeds the tissue in the glute area is a much different size than the place it will be transplanted to on the chest area.

The DIEP and the GAP are only done by a handful of doctors, too. The procedures are quite complex and involve delicate microsurgery. It would be important to choose a doctor who did my technique of choice very often and had a good track record for success. In all likelihood, I would have to travel out of town to find a doctor who had that kind of resume. That would mean a big hassle with my insurance company to make them pay for it. I'll do it if I have to but I would much rather do something easier!

There! Now you're a specialist in the techniques of breast reconstruction.

Perspective

2004-12-14T14:07:00.000-08:00

An important part of maintaining a good attitude during what has turned out to be a difficult year is perspective. It's been easy for me to do this because life has illustrated to me lots of times that I really don't have it too bad.

I remember going to the surgeon's office for my post-op visit back in early October...and I have to say, I hate going into any sort of medical office these days. It's an automatic stressor. Even when I know I'm not there to get test results or news of any kind, my blood pressure and pulse just shoot through the roof. No amount of breathing or attempts at self-consolation do any good. So anyway, my husband and I are in the surgeon's waiting room and in walks this woman and her little boy. She and her son sit right next to us and I see that this woman clearly has a more difficult time ahead of her than I do. I couldn't really tell what her medical issue was but she had recently had some sort of surgery on her face. There was a very obvious growth of some kind and I'll just assume it was a tumor since we were in an oncological surgeon's office. She had a long line of stitches running down the middle of her face, too. I thought to myself, wow, at least I can sort of disguise my cancer by wearing a wig and a prosthesis. There's no way for this woman to blend in and get her anonyminity back.

She was the picture of courage under fire. With pure grace, she did the simplest thing in the world that I will guess was not at all simple or easy for her. She sat down, smiled at me, cuddled her little boy onto her lap and proceeded to read him a story.

Even though her face was hard to look at, I made sure I met her eyes and looked right at her, even though my human instinct was to look away. Why? Well, I've noticed that when I go out in public with my baby and am only wearing a cap or a hat (and not a wig), people will either not look me directly in the eye or if they do, I get the sympathy look which I hate. The sympathy look is even worse than the look that says I wonder what's wrong with her?

Another rather recent event is one that I didn't experience directly but heard about through friends. There was a woman on my ovusoft.com forum who was pregnant through IVF. Evidently this was her miracle baby, she and her husband had tried a number of times to get pregnant with and without technology and they had finally succeeded. Her baby, a girl, was due to be born any day. Actually I think maybe her baby was overdue? Anyhow, as the story goes, the mother noticed that she could no longer feel her baby moving and so she called her ob/gyn's office in a panic. Upon arrival and exam, the doctor ascertained that her baby had died. Just like that. And here's the worse part...she was going to have to deliver her stillborn baby through labor. Frankly I can't imagine the emotional and physical pain of her ordeal. After the baby was delivered, an autopsy revealed that the mother had an undiagnosed clotting disorder which somehow effected the umbilical cord and that the baby's death could have easily been prevented with some medication and careful observation on the part of the doctor.

I'm no martyr, I'm not pleased with my situation. But like I said, it could be a lot worse for me. My baby is healthy. I seem to be handling treatment pretty well. To the best of my knowledge, my cancer has not spread and is still considered curable (not that a doctor would ever say those words out loud.). If I want, I can look "normal" so that I can avoid uncomfortable looks from strangers. I have met some absolutely amazing people during this year as I fight cancer.

Maggie

2004-12-13T14:56:00.000-08:00

This weekend I'm driving to LA to see my friend Maggie. I'll be taking the baby with me, and Dan will get to have some sleep; blissful, uninterrupted sleep.

I haven't seen Maggie for a long time. I think the last time was when I was in the hospital after Jennifer's delivery, so we're coming up on one year. Alot has happened to the both of us since last we saw eachother. Maggie is pregnant (EDD 2/25/05) with twins: one boy, one girl. If anyone on this green planet deserves to be pregnant, it's Maggie. The road to this pregnancy hasn't been easy for her and her husband. They had many difficult decisions along the way and much sorrow.

Maggie is one of those people you meet and just sort of automatically feel comfortable around. She has a kind generous heart, a good sense of humor and a wonderful sense of loyalty for her friends and family. She has been there to listen to me 110% since my cancer diagnosis.

I met Maggie while I was trying to get pregnant back in 2002. I had purchased a book, Taking Charge of Your Fertility and there was a website associated with it, www.ovusoft.com/forum. I went online, joined a forum for those trying to conceive (ttc) and found myself posting daily. Along with Maggie, I met a bunch of other truly fabulous women, some who were trying to get pregnant, some who were pregnant, and some who were already moms.

Since being diagnosed with cancer, I've received phenomenal support from my Ovusoft gals. They have sent me emails, cards, gifts, flowers, food and more. You'd never believe that I had not met most of these women in person because they treat me like family. I've only met three of them in person so far, and will be meeting one more, Denise, this weekend while I'm in LA.

Jennifer and I have never spent the night away from home together so it'll be a little adventure for us. I don't know how she'll do sleeping in a new place but hopefully, as long as I'm there with her, she'll feel comfortable. We're bringing Maggie a bunch of baby gear that Jennifer doesn't need anymore. At first I thought maybe Dan and I should keep it all in case we have another baby in the future but that future is sort of a long way off, and if another baby comes, we'll deal with the idea of baby gear again then.

Sometimes I feel cheated because I lost most of Jennifer's time as a newborn dealing with cancer. It's those times when I think most about having another baby so I can savor that time and focus only on the baby and not on my health. But then I think about chasing around two really small children when I'm in my early 40s and it sounds exhausting.

Compassion for the Enemy

2004-12-10T10:30:00.000-08:00

Thanks to guidance from a new friend at work, I've been reading up on and watching documentaries about the Yogis of Tibet. These are peaceful-minded men and women (yes, women, I didn't realize that there were Yogi women) who have devoted their lives to knowledge, spirituality and an intense desire to look within for answers to the larger human questions.

One of the things I noticed most was that the Yogis--all of them--talked about having compassion for your enemy. This is no small thing coming from them since their country has been in a reluctant and culturely devasting war with China for years.

It made me think about my own life and who my enemies are, and if I could find compassion for those enemies.

I'm happy to report that after some soul searching, I really feel that there are only two true enemies in my life. One is my husband's ex-wife. I don't like saying or even writing her name so I'll use one of her stage names...Bianca.

Bianca is my enemy for many reasons:

She is a thoughtless, meanhearted and dishonest person who regularly pushes the envelope for lying, cheating and stealing
She neglects her daughter, who is a precious, tender soul
She sought to destroy my husband emotionally and financially due to her incredibly strong vindictive streak
She still calls herself Mrs._____. What the hell is that about?
She has outright wished me dead and would gloat with cheerful abandon at my bout with cancer. Even her own daughter recognizes this nastiness in her mom and so has decided not to tell her of my illness.

Will a day come where I can feel compassion for this woman? A resounding NO. She is just too much of a monster and she continues to this day to hurt the people I love. However, I do feel sorry for her. She has wasted her life holding onto anger and hatred, and will never look inward to heal herself and move on. She will never take any responsibility for the destruction she created with her substance abuse, physical abuse and emotional turmoil. The one question I have most often when it comes to her is, why me and not her as the person with cancer?

The other enemy is not a person or even a creature...it's the ultimate intruder...cancer. Compassion for it? If I take a really wide stance on this one... maybe. Really, cancer cells are good cells gone wrong. If only they understood that their widespread reproduction was harming their "host", then maybe they would go back to being good cells. Or maybe they would agree to just die off and stop their evil ways. When I close my eyes at night, I think to myself, go to sleep cancer cells. Leave my body harmlessly. Do not make more of yourself.

Christmas Already?

2004-12-09T14:57:00.000-08:00

Here it is, almost Christmas already. This time last year I was hugely pregnant and thinking only of the giant job ahead of somehow swallowing my fear of child birth and delivering a healthy baby. The doctor said my baby was due around January 3, 2004 but I had this feeling she was going to come sooner. I was right. I went into labor on December 23 and delivered at 2:43 pm on December 24. Welcome to the world, Jennifer.

By the way, that ob/gyn I used? I've started calling him Dr. Assface now because he completely botched my cancer diagnosis. He was so arrogant about it too. Actually he was always arrogant when I asked him questions about the pregnancy. I showed him the lump in my breast when I was about 5 months pregnant. He told me it was a milk duct cyst and not to worry. I never even gave it a second thought but looking back I wonder, why the heck would I have milk in a duct when I'm only 5 months pregnant? You know that dumb expression about hindsight being 20/20. Well. there is it.

Well anyway, I was supposed to be writing about Christmas. As a kid of divorce, I came to despise Christmas. It wasn't fun, it was stressful and sad. One Christmas, as a freshman in high school, I got myself good and drunk at an outdoor keg party. I came home completely obliterated. My mom took me in the house and didn't know what to do with me. She called some neighbors who were active in AA and they told her to take me to the hospital. Let's just say it was a long night.

When I woke up the next morning from my drinking fiesta, my mom told me "you ruined Christmas!" In my mind, Christmas had already been ruined for years. By the way, I didn't even have a hangover. I could see that my mom had been hoping I'd wake up feeling really crappy. It makes me smile even now that she didn't get that to enjoy.

I hated Christmas for years after that. In fact, I don't think I came to like it until I got married. After that it became fun again. I'm not really into it the way some people get, but I do like the special holiday feeling that comes around this time of year.

I used to also hate having a birthday each year. I used to just dread it, even feel resentful of it. Another year older. Ugh. Since being diagnosed with cancer, I just want to be around! I don't care if that means I have to get older too. I want to be here for my husband, stepdaughter and baby daughter. Anytime I let myself think about my baby daughter growing up without me, it's an instant crying jag. There's no way to describe the power and resolution it takes to push away thoughts like that.

One more thing. I survived another chemo. I'm officially halfway done with this treatment regimen. Only 4 more infusions and I'm done. Then a 3 week break to give my body a rest and then 6 weeks of radiation. And then the cancer treatment is over unless something else comes up.

Once cancer treatment is over, I can start concentrating on the cosmetic part of the recovery. It's both scary and exciting. I don't exactly look forward to the idea of a couple of more surgeries but I am so looking forward to having a body I don't feel so weird about.

Over and out.

Miles to go before I sleep

2004-12-04T22:18:00.000-08:00

The woods are lovely, dark, and deep, But I have promises to keep, And miles to go before I sleep, And miles to go before I sleep.

I had an infusion on Wednesday December 1: Number 2, part one. I have number 2, part two on Wednesday December 8 and after that, I'll be halfway through my chemo.

Originally Dan was going to go with me, but our baby had a very high fever that day and so he ended up taking her to Children's Hospital to be seen, and then the two of them stayed home so the baby could rest. As always, Angela pulled through in a pinch and she was able to go along to infusion with me even though I couldn't give her much notice.

This chemo started like most of them do: blood work and then the pre-meds, then the chemo. We were sitting next to a woman (the patient) and her husband. The two of them were sitting silently watching tv as the woman got her infusion. They both looked really tense and scared, especially the woman. I recognized that look from when I was first starting the diagnostic process--it is pure, undiluted fear with no attempt to hide it.

Angela and I were sitting there chatting away but each of us would occasionally sneak a look at the woman patient next to us. Both of us wanted to talk to her--I think we both instinctively knew she needed to talk to a couple of cancer patient survivors who were doing ok. Finally I found a way to break the ice--this patient was receiving one of the same chemo drugs as me--cisplatin, and one of the nurses had just handed her a sample pack of the same antiemetic medicine I now use--Emend.

I asked her, does cisplatin make you sick? I had trouble with it the first time but the Emend worked and now its not so bad. She said in a quiet voice, yes, I was very sick the first time. It was awful. Angela introduced us and the woman replied that her name was Molly. Molly's husband told us Molly was being treated with neo-adjuvant chemo for her cervical cancer. Evidently Molly had a large tumor that her oncologist was hoping to shrink with chemo prior to surgery. Molly and her husband were soft spoken and seemed shy, but there was something about the way Molly looked at Angela and I that made us want to try to keep the conversation going. Angela told Molly that the two of us both had breast cancer and that she (Angela) had recently completed her treatment. I told Molly that I had also completed one kind of chemo regimen and was doing a second kind to try to wipe out any remaining cancer cells since my lymph nodes had not converted 100%. Then Angela and I both joked a little about only having peach fuzz for hair thanks to that chemo. Molly's eyes filled with tears and she asked, do you think I'll lose my hair? Molly is of Asian descent and had very long hair that was straight, thick and beautiful. I told her that I had read about cisplatin, and it didn't make hair fall out so she would probably be keeping hers unless there was another chemo drug in her regimen. There wasn't. She smiled for the first time, even though her eyes were still brimming with tears.

To an person who isn't a cancer patient, you might think that losing your hair is a small trade to be cured of cancer. While that's true, knowing that you'll lose your hair is what I'd describe as adding insult to injury. I've had lots of well-menaing people say "it's only hair and it will grow back." Yes, it's only hair. But it's just one more thing about the cancer patient's self-image that will need to be readjusted. After awhile that self-image list gets so long it becomes unmanageable. Allow me to illustrate:

I have one breast and it will be like that forever. I can get reconstruction but the breast is gone for good.
I had no hair for at least 6 months (now I have peachfuzz)
I gained a little weight during my first chemo regimen. With this second kind of chemo, I've lost weight and have a weird, bony rib cage.
I am in some weird state of menopause that may or may not revert
I have scars from surgery and there are more to come
I'm out of shape from lack of exercise
My romantic life is suffering because I'm tired and my body is out of sync

When Molly and her husband got up to leave, Angela stood up and gave her a big hug. I don't think Molly is usually the kind of person who would be comfortable hugging a stranger -- but I could see that she really needed the hug and she sort of leaned on Angela as they hugged, maybe drawing out a little of Angela's strength and borrowing it. I could hear Molly crying softly and I thought, I bet she's thinking "I'm so scared. I'm afraid I might die." At least that was what echoed in my head in the beginning part of treatment when I was having trouble getting an appointment scheduled promptly with a busy doctor, or when I saw other cancer patients.

After Molly and Angela finished their goodbyes, I took both of Molly's hands in mine and told her I thought she looked great (it was true--she really did). I told her she looked healthy, with beautiful hair and skin, and that when all of this was over, she was going to be ok. I don't really know if she's going to be ok but that was what I felt in my heart so I said it. And it's what she needs to believe, in order to get through the ordeal ahead of her.

Without hope we have nothing.

Feeling Helpless

2004-12-02T10:08:00.000-08:00

For the last couple of days, my baby Jennifer has been really sick. She spiked a fever of 104.7 on Wednesday morning but had no other outward signs of being sick: no cough, stomach problems, runny nose, nothing. It was very scary. Tylenol and Ibuprophen were not reducing her fever. She was getting worse. She would sleep but was in a very delirious state where she was sort of chattering to herself, waving, smiling, but clearly she was asleep and not awake.

My husband has a real mistrust of doctors. I don't know if this is because of my recent health problems where I was misdiagnosed for at least 7 months, or if this is something he always had trouble with. Dan decided he didn't like the pediatrician we'd been using for the last 8 months or so and he insisted we switch. I found one that sounded ok and switched to him but it was only active as of December 1 so this new guy hadn't ever seen our daughter before and he didn't have any of her medical records so it was not really a good time to have an emergency that he could help with.

Dan is not good in stressful situations that involve people he loves that need help in some way. He has no patience and loses his temper easily. We come from different places on how to get good results when we want people, particularly medical people, to help us quickly. He yells and is sort of a jerk...and I try to stay calm and elicit support. I feel that my way works much better and he thinks his way is the only way to get results.

Anyway, Dan decided to take the baby to Children's Hospital to get her checked out. They were there from about 9am - 1pm. She was seen by several doctors and finally they decided to take blood and urine samples. These samples revealed that Jennifer was fighting some sort of infection, so they gave her a shot of some strong antibiotics. By this morning, she seemed to be feeling much better. Her temperature is back to normal and she is bright eyed and alert.

Having a sick baby gives me such a feeling of helplessness. All I want is to know how to make her feel better and to give her comfort. Since she is pre-speech, she can't easily tell me what is wrong but she does a good job of letting me know she feels sick. The worst part about this is I know we have years of it...she is in daycare and is always exposed to lots of other little babies. One is always coughing, sneezing and with a runny nose. I am unable to breast feed my baby so I can't boost her immune system with breast milk. It's a real sore point with me, that part about having to give up our breast feeding. I didn't think I would love it as much as I did, and we were just getting good at it when I had to quit because of diagnostic cancer tests and then chemo.

I just love having a baby. I'm still up in the air about the possibility of having another. First, I don't know if I can have another. Chemo may have ruined that for me and it will be a while before I know whether it did or not. Cancer makes it so that I ought to wait at least two years before trying to get pregnant and by then I'll be 40 or 41. I would like Jennifer to have a sibling that is closer in age to her--she loves her big sister but Veronica is ten years older than Jennifer. And after all that about whether or not we can even physiologically have another, we will have to figure out if we can afford another. And what if my cancer returns after another baby is born? That might leave Dan with three children to raise all on his own. So many things to think about. The times of having a relatively simple life seem to be behind me now. I try not to look back and miss things the way they were because I can't change how things are. I'll just need to try harder to be grateful for the days in front of me and the fact that there are still decisions I can make because I"m here to make them.

Reality TV: I just don't get it

2004-11-30T14:26:00.000-08:00

What's the lure of reality tv? Seriously, there is nothing realistic about the storylines. People don't get stranded on islands and they don't switch mothers or have to eat bugs for food...at least not very often. The people on these shows know they're being taped, so it's not "real" in that way. From what I hear, the people featured are not the kind of people I'd be interested in getting to know more about and I doubt I would want to be more like any of them.

Nevertheless, most of the friends I have watch at least one or two of these shows. Last night, Dan and I watched "Trading Spouses" because a guy he works with (and the guy's wife) were on this show. I am embarassed for them! When the show was over, Dan went online to the Fox TV chat room and read what people were saying about the people he knew, The Gates family. There were 27,000 messages, mostly that Barbara Gates is a rotten, obnoxious woman and a terrible mom, both to her own children and to the child in her "substitute family." One person claiming to be their neighbor actually posted the Gates home address so people could send them hate mail.

Truthfully, I'm not a fan of Barbara Gates. She is a self important, self-aggrandizing, egotistical hypocrit and she makes a big deal about being a vegan (that's a vegetarian) and animal rights activist. Dan and I invited Barb and Bill to our wedding and as a nice gesture, we ordered them vegan meals for our wedding lunch. Not even one year later, Dan is chatting with Barb and she says she doesn't even remember going to our wedding! My other recollection of Barb is from the company Christmas party where she yelled at some poor banquet server because there was cream for the coffee but no non-dairy creamer and since she is vegan, she would not use cream. Fine...don't use cream (or, just bring your own non-dairy creamer if it's that important) but for pete's sake, don't harass the waiter. To me, this is a woman who just doesn't have enough going on to see what is and is not important in this life.

I'm not saying I'm the only one on earth who knows what's important now, just because I've been diagnosed with cancer. It was an eye opener certainly but I know my eyes were open pretty good before the diagnosis too. And I know lots of people who "get it" who are and always have been healthy.

I think I was going someplace with all this, but where? Let's recap briefly: I don't like Barbara Gates. I don't mind animal activists or vegans but it should not be the defining factor of a person. I don't understand why America loves reality TV so much. I think a lot of people miss the point of being alive. I don't think I have all the answers but at least I'm looking.

This Time, Last Year

2004-11-27T22:49:00.000-08:00

I was just staring at the keyboard thinking about where I was this time last year. I was pregnant and my baby was going to be born in about a month. I was spending a lot of time reading about giving birth and I was pretty scared about how it was going to go. I had hired a doula to share the birth experience with Dan and I and I felt like she was going to make all the difference.

Here it is only one year later. I have what barely amounts to a crew cut as my hairstyle, one breast, three scars from surgeries and I bet I weigh about 45 lbs less. When I read that back, it sounds like I'm sad about the differences but really, I'm not. Mostly I'm just glad to be here.

A change of perspective is clearly the reason. I used to sort of resent having a birthday every year. Now I think I'm going to be happy to be around as long as possible. I'm not worried about aging and getting older...the opposite actually...I'm worried about not getting older.

It's my 20 year high school reunion this weekend. Obviously I didn't go, the timing is just all wrong. And anyway, I hated high school, I was so unhappy then. So much bad stuff going on at home, I was permanently depressed and bitterly sarcastic. I get the feeling that alot of people spent high school trying to fit in but as I recall, I spent a lot of time distancing myself from all my former pals. When I was in the early grades, I always had so many friends. By the time high school came around, I just wanted to disappear.

That feeling of depression pushed right on through until at least my mid-twenties. All I can say is thank god for therapy and SSRIs.

Good and Bad Energy: Tales of the Time Burglar

2004-11-23T15:06:00.000-08:00

Next time you meet someone new, pay attention to how you feel when you're done talking to this person. Do you feel energized and still interested in making the most of your day? Or do you feel like all the energy has been sucked out of you and now it's time for a nap? I often wonder how a simple conversation can evoke such a strong reaction but it happens to me all the time.

Sometimes I just connect with someone and when that happens, it's memorable. Memorable makes it sound like it doesn't happen often...actually I find it remarkable how often it does happen. I'd say that since being diagnosed with cancer, it happens more often than ever. Maybe this is because right now, I tend to meet more people who have something (cancer) in common with me. I'm in places where those people are: the infusion room, a doctor's office, or a place where diagnostic tests are given. Or maybe it's somewhere slightly more pleasant: a place to buy a wig or get a special clothing item that works with a prosthesis.

I've found that most cancer patients I'm chatting with are incredibly candid about their feelings. They'll do this without hardly even knowing me and I return the trust by doing the same. How often do normal, healthy people do this with eachother? Allow me to present some possiblities for this phenomenon: my first thought is that when a person is presented with a life-threatening illness, perhaps one of the first casualties is the kind of conversation some people call "chit-chat." Personally speaking, I've realized that it's important to say what you think when you're thinking about it. This is not to say that there's no longer any room for talking about movies, fashion and music. It's just that if there's something more important that needs to be said, it gets said first.

Now let's talk a little bit about the kind of person I'll call a Time Burglar. The Time Burglar is the person who needs constant attention and who thinks the world revolves thusly. The Time Burglar makes you think about every word you say before you say it because s/he may take it the wrong way and will then get angry and cause you much regret that you weren't more careful when you tried to express yourself. This person can talk for a really long time and never say much. In the movie Pulp Fiction, Uma Therman's character asks John Travolta's character "Do you listen or do you just wait to talk?"

Sometimes it's not a person but an activity that drains away energy and when that happens, it's called a Time Suck. Good examples of the Time Suck: watching sports on tv or playing video games. Not to say that Time Suck activities are not fun -- they can be, but most times the brain sort of checks out during these types of things. (I'm sure I'll piss off alot of people by writing that.) And there's a good reason to call it a Time Suck because the time just floats away and the people involved are hardly aware of it.

I'm getting off track here. My point is, I love the feeling of connecting with someone and getting that high from the energy created. I love a conversation where I come away thinking about what was said and feeling the emotion that was behind the words. These are gifts we give to eachother, as fellow human beings.

Changing the Locks

2004-11-22T10:43:00.000-08:00

When your body has betrayed you, how do you ever feel safe again? I don't have the answer to that but I'm thinking about it all the time now. Betrayal of the body is not like being betrayed by other elements. If a person betrays you, you can remove that person from your life or that person can tell you s/he is sorry and you can try again. There's even an expression for when a person betrays your trust: Fooled me once - -shame on you, fooled me twice -- shame on me.

My body has always been so trustworthy until this cancer thing. It has gotten me through three half marathons and one full marathon. Through weight lifting, cycling, spinning, the eliptical trainer, walking and occasionally, being lazy. Through dieting, both carefully and carelessly. Through pregnancy and childbirth. I was the person who never got sick when everyone else was catching a cold or the flu or whatever was going around. I know my body will get me through cancer but why did it get cancer in the first place?

My imagination spins a million possible reasons about why I got cancer. From my mother's smoking during my entire time growing up? From living too close to busy roads? From microwaving stuff in plastic and paper? From taking Clomid to try to get pregnant? From taking birth control pills for so many years?

The logical part of me says that if I don't know why I got cancer, then how can I avoid getting it again? My brain loves logic, it makes the world go around. I'm not a computer programmer but oftentimes programmers think of logic in an "if...then" statement. IF something happens, THEN do this. IF I don't know why I got cancer, THEN how do I keep it away from me for good this time?

Last night I had a dream that I was changing the locks on everything. The car, the house, the office door, the locker I sometimes use at the YMCA. I mean everything. Today the logical part of me wants to know what that means? Does it mean, If I change all the locks, can I keep cancer out of my life for good?

Obviously, the problem with not knowing why I got cancer means that I have nothing I can make changes to in order to prevent cancer's return. I don't smoke, I exercise, I eat pretty well, I'm not overweight. I'm not in the high risk group for cancer and yet I have it!

I have read in a few different books that some researchers think cancer is caused by stress. Possibily. Stress causes the immune system to work less efficiently. A less efficient immune system might not be able to crush those rogue cells that are reproducing out of control the way a cancer cell will do. But seriously, who does not have stress in her life somewhere? If high stress caused cancer wouldn't a lot of other high profile people also have it? and yet they don't.

Stress is the one thing I know I had lots of, but did it really cause my cancer? Just in case it did, I'm taking steps to reduce stress in my life. I will take Yoga. I will take time to breathe. I will take things less seriously. I will envision a healing white light surrounding my body and I will advise it to be on the lookout for cancer cells. I will try to forgive the people in my life who have not been good to me. I will try to accept people for who they are.

The 4am Philosopher

2004-11-19T08:08:00.000-08:00

It's been awhile since I had a full night of sleep. To be more specific, let's define what I mean by that. 8 hours of sleep in a row, uninterrupted. I'm trying to think when that was, those blissful 8 hours of snooze time...somewhere in early pregnancy perhaps? At some point in my pregnancy I woke up all the time to pee or to change position or because my hip bones hurt.

Then of course, the baby was born and no one needs me to tell them that a newborn does not allow for an 8 hour snooze for her parents.

After only a few months of newborn baby sleepless nights came the cancer diagnosis. Lots of sleep lost there. Then stress from pending tests, treatments, surgery, etc. plus a baby that wakes up sometime between midnight and 4am to be taken to her parents' warm and lovely bed. Jennifer is spending more hours in her crib these days but to be honest, I don't mind a bit that she wants to come in with us. There is something so comforting about having her there cuddled up, sucking her thumb and making her little baby sounds. It's soothing for me to watch her sweet sleeping face or touch her soft little hands. She is such a gift.

I've read all kinds of books about insomnia. I've spoken to my therapist and a psychiatrist. I've taken sleep medication. Nothing really works. I think the thing that will work is being done with all treatment and all surgery (even the cosmetic stuff) so that I can start the next chapter of my life. And that's what I really think about when I wake up...what will I do with the time I have here on earth?

No one really knows how long she has here. Since having cancer, I have realized that. Before that I'd have to say I never really thought about it, and just assumed I'd live to be an old woman. Now I know differently -- I might live to be an old woman and that would be fabulous -- and I might not. It can all be taken away anytime by a million different things. Not just cancer or illness. Car accidents, deadly terrorist attacks, other kinds of freak accidents. I just saw on the news today that a person was critically injured because someone threw a frozen turkey out a car window and accidently hit this person with it. How do you plan for that? Now I know that you can't plan for any of it and you just need to make the time count every day.

I am not the person I was before the cancer diagnosis and there is no going back to her. I don't think of this as a loss, although to some extent it is a loss of innocence and that is always sad. I'm searching for what it is that will be meaningful to me and then I will pursue it relentlessly until I'm satisfied with the results. I don't mean the obvious stuff like spending time with my family and making sure to tell the important people in my life that I love them. I'm talking about finding the reason that I'm here on earth. Making some sort of small difference in how things happen here. I just don't know what that thing is yet. But believe me, I'll figure it out and give it everything I've got.

Infusion: What's it like?

2004-11-18T08:39:00.000-08:00

As I mentioned, infusion is another name for chemo. I get a little giggle out of that because recently I noticed that Starbucks calls their tea concoctions an infusion too.

Chemo is usually given as an IV infusion and you can get it through a vein or through something called a port. A port is a surgically implanted device that is sort of like a vein hotline and is threaded through a more major vein like the superior vena cava which goes directly into your heart. I chose to have a port because using your veins for these really harsh drugs can mean the end of your veins as you know them. As it is, my veins roll and close so that would make chemo even less fun than it already is. And with my first chemo regimen, if one of the medicines leaked out, it could damage the surrounding tissue. My port is directly under the skin on my left arm and on the right (body) side of my middle bicep.

The first thing I wanted to know when I sat down in the infusion chair was how long is this gonna take? It depends on what drugs are being given. The ones I've had always take a long time, 3 hours or more. Some people are in and out of there for theirs in just a few minutes.

I had imagined that as soon as they plugged me in to the IV, I would start puking. Not the case at all. In fact, for the first regimen of chemo I got (Taxotere, Adriamycin and Cytoxan), I never threw up, not once. For the regimen I'm getting now (Cisplatin and Gemzar), after the first infusion I tossed my cookies miserably starting at about 48 hours after the treatment. I had the second part of that infusion yesterday (a week later) but was given some new medicine to try to control the puking. I think it goes without saying that I would like to avoid puking during after any more of these infusions.

After my very first appointment with the oncologist, he and the head chemo nurse walked me through the infusion room so I could see what it was like. My reaction: I burst into tears. It was reality and then some. Not that the people looked miserable or anything. Actually many cancer patients are quite upbeat and chatty, and they are sitting there with friends or family, reading, watching tv, knitting etc. They don't all look sick either. Most of them did look alot older than me although occasionally I do see someone who looks about my age.

I have never seen any young kids in there getting treatment. I think the kids who get chemo get it at Children's Hospital but I really don't know. When I'm all done with my own treatment, I may volunteer to visit the kid's chemo room, wherever it is. I bet there are some really amazing little kids sitting there.

Ok, so here's what it's like to get an infusion: I showed up at the appointed time to check in. Starting with this chemo, I was given a pill to take one hour before chemo started to try to help prevent my delayed nausea/vomiting. Then a nurse took my gigantic medical file folder and looked to see what I needed that day.

First, the nurse drew blood for a CBC (complete blood count). This is to be sure none of the my counts are too low and if the counts are too low, treatment may be postponed until the doctors can get it back to a comfortable level. They do that with injections to boost white and red cell counts. Those shots hurt SO much. They leave a bruise that lasts a couple of weeks, too. Sometimes a patient gets those shots prophylactically on a weekly basis. That's how they did it for my first kind of chemo.

Once the CBC is out of the way and if I "passed" then my infusion starts. By the way, this time I didn't officially "pass" because my platelet count and white count was pretty low after only the first treatment. My doctor decided to only give me half of my dose of chemo drugs, which he said is common for patients on this regimen.

Since I have a port, the nurse accessed it with a special kind of needle and then flushed it out with something, heparin maybe? Then they started Pre-Meds. Pre-Meds are anti-nausea medicine, and some other stuff: a diurectic (to flush it all through) and some minerals (magnesium) since the chemo I get tends to deplete the body of that. Once the Pre-meds are done, chemo gets dripped through the IV, one bag at a time. When my chemo drugs were done, I also got extra IV fluid to hydrate me since my chemo drugs can be hard on the kidneys.

For these last two infusions, I have been in the infusion room from 1:30 - 5:30 or 6:00 pm. I have to go back tonight for an injection of some medicine called Neulasta, which boosts white blood cells. It usually causes a nasty backache the day after and for a few days following because as an adult, your body only makes white blood cells in the marrow of your long bones and the ones I tend to feel that in are the long bones in my lower back.

Chemo with Angela as my companion (I call her my Chemo Sabe) has been pleasant. This time I brought us some snacks: cheese and crackers, green apple slices and chocolate chip cookies. She brought us the last few episodes of the final season of Sex and the City. All in all, except for having an IV stuck in my arm, it was actually fun. Go figure.

Free Radicals

2004-11-17T09:54:00.000-08:00

Today I'm going in for part 2 of my first cycle of chemo. Funny thing about chemo, the goal is to create free radicals which will kill cells. Healthy cells and cancer cells. The oncologist is trying for cell death, plain and simple. Programmed cell death has a name, I think its apoptosis. Healthy cells are programmed to die within a normal period of time for whatever kind of cell it is. A cancer cell loses its programming somehow and just keeps going and making more of itself. Not good. This is how tumors form. (I've oversimplified it but ok, work with me).

When you listen to commercials for vitamins, especially antioxidants, the vitamins are promoted to prevent free radicals from forming. Therefore, only low doses of vitamins are recommended during chemo because as I said, chemo is meant to produce free radicals. Sounds weird, right?

It's hard to describe what it feels like to go to a chemo treatment. They call it an infusion. Doesn't that sound healthy and new age? Anyway, I dread going and yet I look forward to it because it means one more is out of the way. I'm getting the #1 emetogenic chemo drug, cisplatin, along with another drug called Gemzar. Emetogenic means it makes you toss your cookies or feel really nauseated or both.

Last Wednesday November 10th was my first treatment with these new drugs. I got really sick on Friday which is considered a delayed reaction. Most people get sick between 4-16 hours after a treatment, not 48 hours after. Its less common but it happens, and it's also harder to treat. My oncologist is suggesting a new drug called Emend that might help. It's $250 for three pills. I was speechless when I heard that. I don't know what people do who don't have heath insurance. I guess they bounce alot of checks. I read that lower income women have a higher mortality rate when it comes to breast cancer. White women have the highest survival rate. That works ok for me because I'm white but I can't imagine how I'd feel as a lower income woman who was a minority too. No one needs to feel the odds stacked against her any more than they already are when you hear the words cancer come out of your doctor's mouth.

I saw an advertisement at the oncology office for a drug and the caption was "The only thing worse than hearing you have cancer is hearing it twice." This is why I'm getting more chemo now, while my disease is considered to be curable. Cure me! I miss my days of good health and strong physical condition.

My friend Angela is going with me again for today's chemo. When she went (she recently finished treatment herself), she said she tried to make each one an event. That made it sound good so that's what we're doing. We're going to dress comfy, I'm bringing us some snacks and she is bringing a video of Sex and The City for us to watch since my onco office has tvs and vcrs at each chair.

In Yoga, at the end of the session they say Namaste. It means I bow to the light in you. (or something like that). So to my Good Cells, Namaste and rest in peace, I'm sorry you have to die today along with the enemy. Cancer cells, go straight to hell and don't come back, you are intruders and not wanted in my body. I know you're sorry for turning on me but I can't forgive you because you have caused me so much misery.

Namaste.

It's the little things that mean the most

2004-11-16T10:31:00.000-08:00

Since being diagnosed with cancer, I've really seen my friends and family do some incredible things for me. Some small, some not so small. I want to keep track of this because it's been so important to me to know that people are thinking about me and doing what they can do to help me and my family get through this. It's not in any sort of order and I may not get it all up there in one fell swoop but here it is.

Dan (my husband): I don't even know where to start. He still thinks I'm sexy, even when I'm bald with one boob. He takes over with the baby and never complains. He keeps the house clean and does tons of laundry. He walks our dog and remembers to feed the cats. He went to each and every chemo with me during my TAC treatment. Put my wig on and looks like Spicoli from Fast Times at Ridgemont High and makes me laugh so hard I cried.

Susan: Picked up the baby on the days I had chemo. Went out of her way to get a baby seat for her car so she could do it. Always calls to see how I'm doing. Came over and helped me style my wigs since I'm not great at stuff like that.

Maggie: She sent me $50 worth of Cold Stone gift cards when I told her my tastebuds were ruined by chemo and ice cream was one of the only foods that tasted ok.

Brenda: My breast buddy, a cancer survivor. Amazing moral and emotional support. I feel like I've known her my whole life, not just for the last 10 months or so. I can talk to her about anything and she just understands.

Angela: See all that stuff up there about Brenda? Same goes for Angela only I haven't known her for as long. These two women have made it bearable to go through treatment and keep a smile on my face.

Vikki (my sister): She sent me a few thousand dollars to put in my savings account to pay for whatever I couldn't pay for on my own. I didn't ask, she just sent it and says she doesn't need it back. She doesn't remind me about it or ask how I'm using it. Also, she has flown from NY to CA a number of times since my dx to help me through emotionally rough times. As a surprise, she sent me a cute pair of shoes like some she has that I commented favorably on even though I didn't ask.

Tina: She cooked for my family and filled our freezer with tasty dinners. She came over when I was sick and had the baby with me even though it was during the middle of her work day. She calls often to see how I'm doing. Has volunteered to go to a chemo with me.

Dad and JoAnne: They call often to see how things are going. They came out for 17 days to help the family after my surgery since I couldn't pick up the baby. They paid for groceries and gas for the car. JoAnne is always there for an IM. My dad has been through chemo and knows how crappy it can be.

Mark: He calls all the time to see how I'm doing. He and his wife watched the baby so my husband and I could have a quiet dinner alone. He makes me laugh about stuff that didn't seem funny at first but does now. He can make anything funny, and knows when its important to get a laugh out of me.

Fretz: Tried to get my employer to allow other employees to donate sick time. Brought me cookies. Calls often to see how I'm doing. Makes me laugh. Didn't blink the first time he saw me with a bandana on my head and no wig. Has volunteered to go to a chemo with me.

Aunt Angie: We have been out of touch for years and had a misunderstanding as the cause. She wrote to me when she found out I had cancer and now we chat through email and post. She sends me a check when she can and always tells me to spend it on myself, not the kids or the bills.

Tom, my boss: Has been wonderfully flexible with my schedule as I went through all the diagnostic tests and then chemo past and present. Does not over manage me and knows I will get my work done and not disappoint him.

Jill: She went with me to see doctors during my diagnosis and workup. She spent alot of time talking to me about cancer since both her parents and sister have been through treatment.

Helen: Where do I start? She is a breast cancer survivor I know through work. She is spiritually vibrant and has great energy. She is supportive and always knows what to say when I need a calming voice. She is the kind of person I aspire to be more like.

Bobbi: A friend of my stepmom's and now a friend of mine. A survivor of late stage ovarian cancer. Another good resource to talk to about treatment. Has a helpful son who is a radiation oncologist. Made me a polartek fleece blanket that I wrap myself in every night like little kids do with their favorite blankie. Sends me strength each night when she looks at the sky over her house in FL.

Lindsey: Sends cards and emails me. Sends little care packages periodically. Didn't bat an eye when she first saw me with no hair and a bandana on my head. Has a wonderful sense of style that I would copy in a heartbeat if only she would give me about 4" of her height (she is almost 6').

Kelly: After my surgery, she sent a giant box of gourmet food to our house so that we didn't have to worry about dinner for about a week.

There are plenty more people who have been terrific. I'm not done yet.

My Little Ray of Sunshine

2004-11-15T14:33:00.000-08:00

It is simply not possible for me to love another creature more than I love this baby. Just when I was starting to think Dan and I weren't going to get pregnant, there she was. See...surprises. You never know when you'll get one. I will do anything I have to do to try to get more time with my family on this earth and that means sucking it up and getting all the treatment the doctors recommend to try to get a "cure" for my breast cancer while it's still in the "curable" stage, that is, not spread to distant organs in my body.

How did I get here?

2004-11-15T14:11:00.000-08:00

My daughter Jennifer was born on December 24, 2003, at 2:43 pm. She was born c-section after about 12 hours of labor. She got to +1 and could descend no further. I forget the name of the "presentation" of her head, maybe it was occipital. It meant the widest part of her head was trying to come down thru my pelvic bones and it just wasn't happening. When my doctor finally told me that she had to take the baby c-section, I cried. It was the thing I had been afraid of most when it came to child birth. And there it was happening to me and there was no changing that. And you know what? It wasn't that bad and my baby is healthy and beautiful. I have a small scar. Not a bad trade.

When the year 2004 began, I never guessed I would be doing anything other than watching my baby grow, learn and become a toddler. Life can surprise you like that...you think things are going to go one way and then bam! everything you know gets turned upside down and you're left scrambling to put the pieces back together in a way that works for you.

So maybe now you're wondering what surprise my life gave me. It gave me breast cancer.

What were the odds of a pregnant woman having breast cancer? I'll tell you because I looked it up when I first found the lump. The odds are 1 in 2000. Yes really. With odds like that, does that make me lucky or unlucky? It all depends on how I choose to look at what's happened to me since cancer darkened my door.

I have met some truly wonderful people because I have cancer. I have learned alot about myself and what kind of person I am when things get really tough. I have learned who my real friends are and what they will do to help me and my family simply because they love me. I have learned that my husband loves me because of who I am on the inside, not just who I am on the outside. Which is a good thing because let's just say my outside is in a state of change right now. But I'm getting ahead of myself.