18 E-mail: staying home longer and other current events

4/21/2006

It’s been a hard week this week as it’s been our first week with nobody living in the house with us, but we’ve survived and gotten a few perks for our efforts. Kelric still makes it difficult to sleep at night. Sometimes he sleeps for three or four hours. One evening he slept for seven hours! But sometimes he'll sleep only for 15 minutes. You never know how long you’ll have between wails. He’s a noisy sleeper full of little grunts and groans, so sometimes we wake up to baby noises that could be the preliminary sounds before serious cries and many times our baby remains asleep after we’ve got the bottle warmed in preparation. He’s something else!

On the other hand, he is now sleeping in his play pen and his crib. He slept well in the car seat, but his little back would get so hot he’d be all sweaty when we took him out. Plus the car seat itself has dire warnings including the word “never” about letting a baby stay in there when you’re not watching him. We felt the risk was minimal when Kelric was too little to move much or have his movements be very effective. Now he can squirm his way halfway out of the seat while sleeping if he’s not buckled in, and he can cause the thing to rock slightly even when he is strapped in. He has changed and grown so much these last five and a half weeks. It’s amazing how his little face and body have started to plump up.

Kelric is beginning to make a noise that sounds like a coo. He sometimes beams at people briefly. His eyes can now track movement when it’s nearby and he takes a special interest in watching me. The other morning I woke him and he gave me the biggest smile. Then he appeared to be in a great mood until he realized he was hungry. (I had a bottle ready for the little bird so it wasn’t a sad realization for long.) In short, though he still drives us crazy at least once a day it is becoming more fun to be around him. The other nice thing is that we’re learning to interpret his different cries and body language better. I feel pretty proud of myself when it takes only one or two guesses to give Kelric what he wants or needs rather than to feel helpless or clueless.

This week I made the decision to extend my leave of absence from my job by three weeks. I coordinated with the cancer center and my company’s HR department to take the appropriate steps. Everyone worked together and the short term disability leave has been extended through July 23rd. I intend to use only three weeks of that total time, however, because we can’t afford for me to be out of work for that long. If the new schedule holds, I will return to work on May 15. That’s a Monday on a non-chemo week. It will give me time to take the last two AC treatments of chemo before I head back to the office. (My chemotherapy regimen has me on 4 treatments of Adriamycin/Cytoxin – AC and 4 treatments of Taxol – T. All the treatments are two weeks apart and currently scheduled for Thursdays.) Today I learned that the effects of chemo making one feel like crap are cumulative, so I can expect to feel worse with each AC treatment. Something to look forward to…NOT. The Taxol treatments may not be as devastating but we won’t know for sure until I go through it.

The first chemo left me feeling bad the first night, okay during the second day but bad the second night, and then not so bad the third and fourth days. The second chemo left me feeling bad the first night, bad enough to actually throw up the second night, and seriously tired and weak the third day. I bounced back by the fourth day but it was a struggle. I’ve had mild nausea off and on ever since, especially when I go too long between meals. It’s a lot like being pregnant, including how eating saltine crackers helps me shed the light nausea and drinking ginger ale with real ginger helps as well.

Yesterday I went to Culver’s for lunch while my car was inspected and had the oil changed. I spoke with the owner, Elaine, someone Guy has known by sight since the restaurant opened because he was one of her first customers. Elaine’s daughter had cancer in her leg when she was 7 years old. They went through chemotherapy and radiation treatments 25 years ago with that child and she’s a survivor to this day. She still has problems with her leg, though, and amputation may eventually be in her future in the next 10 years or so. Elaine’s daughter now has her own healthy 3-year-old daughter after being told she wouldn’t be able to get pregnant. She’s considering whether to take the recommended medication that will help with her leg problems but deform any child conceived while taking the drug, or to delay treatment in order to conceive and carry a second child. Elaine told me that she counseled her daughter to let the 3-year-old be an only child and to make sure the child had a mother still around to take care of her rather than a sibling to share her grief if they lost their mother early. I thought that was a wonderful and timely story to share with me.

Guy and I talked about it when I was pregnant and we decided as a couple to have only one child. We can’t really afford the cost of a second child and since Guy is 56 now we didn’t want to go through the newborn stress again when he was even older. It has been difficult, emotionally, with my situation making it likely that chemotherapy will throw me into early menopause and there’s only a 50% chance that my body will naturally return to its normal hormonal cycles after treatment ends. I mean, it’s one thing to choose to stop with one child and it’s another thing to have that choice forced onto me by my health. Part of me wants a second child just to show that I can do it. Guys says I’m a bit competitive but I don’t know where he gets that idea.

The other thing hitting at me is the possibility that I may carry the BRCA 1 or BRCA 2 genetic mutation. I submitted to the genetic test last Thursday so I should have results in about four weeks. One down…three to go… If the genetic test is positive for either genetic marker, then I have something like a 48-84% chance of getting breast cancer in my lifetime and a 24-44% chance of getting ovarian cancer. While breast cancer is fairly easy to catch in an early stage, ovarian cancer is extremely difficult to catch in an early stage (per my oncologist). In other words, self exams and mammograms can make it possible to keep my breasts and catch a recurrence while it’s easy to remove, but there is a very real risk that I could develop ovarian cancer and we wouldn’t know until it’s too late to do much about it. The recommendation by the breast surgeon is to have both of my ovaries removed as a preventative measure. Talk about having my reproductive choices cut short!

This week I went to my OB/GYN for my post partum checkup. We discussed the genetic test and the recommended surgery should it be negative. My OB/GYN enthusiastically agreed with the breast surgeon that we should remove my ovaries soon if the results show a positive result. Her absolute conviction that that is the best thing to do really upset me when I thought about it later. The logical part of me understands and agrees, and I had already reached the conclusion that surgery would be best if I’m a carrier. The emotional side of me wasn’t/isn’t ready yet to face that reality and I spent the day and evening preemptively grieving the loss of my ovaries. It’s possible that I am part of the 7% of the general population who gets breast cancer with no genetic component and the risk of ovarian cancer could be extremely small. With recent events, though, I just don’t feel lucky, punk.

I like Elaine’s advise to her daughter, though. It would be better to do everything I can to make sure that I stay around to raise my little boy than to risk dying in order to give him a sibling. Guy is quick to remind me that he wants me here for a long, long time as well. I admit that I want to stay, so a difficult decision isn’t as hard as I thought.

Then again, the genetic test could come back negative and all this worry and stress could be for nothing.

Well, we’ve decided to go out for ice cream tonight. My nose has been bleeding all week and the inside of my mouth has a strange texture that is related to the chemo, so soft, cool ice cream sounds good to me. I had blood work done this morning and my blood counts are all normal and the thinness of my blood is right where they want it to be, so physical things are a little uncomfortable but not dangerous. I’m signing off because I like ice cream more than message composition. :-)

Cheers,
Angela

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