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

Sunday, June 19, 2005

A short reprieve

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.

Thursday, June 16, 2005

Infections and an emergency hospital visit

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.



Friday, June 03, 2005

Braveheart

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.