what thoughts rattle around in your brain when you're a mom of a toddler and a breast cancer patient?

Saturday, February 26, 2005

It's cancer

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.

Wednesday, February 23, 2005

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

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.

Wednesday, February 16, 2005

If life is a rollercoaster...

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.

Monday, February 14, 2005

High Anxiety

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.

Thursday, February 10, 2005

B9 (benign)

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.

Friday, February 04, 2005

Fade Away and Radiate

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.

Thursday, February 03, 2005

Sanctuary

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."