Cycling On

I am reaching the end of cycle 2 and am feeling quite good today.  I woke up craving a hamburger which Paul suggested was not a good idea.  Sometimes when I feel good I think I want to eat certain things that turn out to make me feel sick in the long run.  And it is pretty clear that how I experience tastes has changed.  I tried eating a small ice cream bar last night and it did not taste like it normally does.  I do not have the metallic taste in my mouth that some get but something has changed.

We are trying to follow Paul's urologist's suggestion to get away for a short trip at the end of each of my cycles.  So this time we are heading off to San Diego on Monday to Paradise Point for two days before cycle 3 starts again on Thursday.  Unfortunately rain is forecast for Monday.  But it was also forecast for today and it is quite sunny out so maybe we will get lucky.  I am curious to see how I do in the car.  I seem to have more susceptibility to motion sickness these days which of course is exacerbated by the long trips to the hospital on infusion days.  I wonder if it is a form of anticipatory nausea in that I have associated being nauseated with driving in the car.

I have been ranting a bit this week, since my life has so little activity, about NBC's coverage of the Olympics.  In 1984 we went to England during the summer Olympics which were held in LA.  We thought the city would be a mess so we planned to get out before we got entangled in one massive sig-alert.  As it turned out, the city functioned fine.  We on the other hand were treated to BBC's coverage of the Olympics which was more comprehensive and live than any American television coverage.  Since we had jet lag we were able to watch events live and uneditorialized, without constant focus on American athletes.

This time, the winter Olympics are in Vancouver which is the same time zone as LA.  However, NBC is delaying its broadcasts here for prime time.  So on a number of occasions I have seen the winners of events posted on the internet or in news alerts to my emails hours before it is shown here on TV.  Most frustrating was the Men's final in figure skating.  Evan Lysacek trains nearby in El Segundo at the rink where my daughter once skated as a child and worked a few years ago before moving to SF.  We like Evan-- for his skill, his work ethic, his looks (let's face it) and his poise.  I found out he had won 3 hours before NBC showed us the event.  BAH!  And since I knew he had won, I left on my DVR to record the program but discovered later that the DVR cut off in the middle of Plushenko's program. Therefore not only did I miss Plushenko's performance on the ice,  I did not get to see his apparently abrupt departure from the kiss and cry after he learned he had not won the gold.  I have been able to see some of Lysacek's interviews where the commentators tried to bait him into badmouthing Plushenko.  He really did take the high road showing how well he is advised and how smart he is to follow that advice.  Hopefully he does not turn out to be like Tiger Woods and Kobe,  brilliant athletes who looked like nice guys but turned out to be something so very different.  We need athlete heroes who are genuinely good hard working people without any huge hidden character flaws.  Is that too much to ask?

Rolling along

I am now in day 11 of cycle 2 so my paranoia is in full swing despite this lovely southern California Valentine's Day.  I still feel the effects of the last chemo infusion on day 8, which unfortunately led to my worst night ever so far in terms of sickness.  But now I am also worried about infection since I am at the bottom of my white cell count cycle.

 Otherwise I feel pretty good.  My head still has a little fuzz which keeps falling out daily.  I am eating a bit better.  Smells seem to bother me more this cycle than the first.  Anything anyone cooks in the house becomes an instant source of nausea.  The cooked fish was the worst.  At a friend's suggestion, we have ordered an air purifier to see if it will help.

We also finally replaced our old leaky overflowing master bathroom toilet with a new, water saving ADA approved toilet acceptable to the beefy boys.  Unfortunately for me, as I discovered the other day, the toilet is too high for my stubby little legs which dangle and shake during uncomfortable moments.  We have however found a workaround--a foot rest from Relax the Back.

This cycle has not been quite the same as the first.  The main overall difference is that I seem to have had more time during the infusions when I felt okay, then to rebound to feeling much worse than I remember feeling during cycle 1.  I cannot be sure that I did not feel as bad during cycle 1 since the bad times tend to run together and diminish in intensity as time passes.  My nurse the other day remembered that I was quite sick during one of the early days of cycle 1 which mercifully did not register in my memory.

The rollercoaster ride continues.

Hair Today, Gone Today

I decided to get the rest of my hair shaved off this morning.  I will need to start wearing hats and scarves now so here is my first "scarf" for my new lack of 'do.

Losing my hair has been fairly upsetting but I could not live with the hairs all over my pillow,  particularly when some of them wound up in my mouth.  Hair is really not that tasty.  So I went to Supercuts with my daughter as support.  It took me a while to convince the hair stylist to shave it all off.  She wanted to leave some hair even though my hair was already quite short. I am sure that reflects our belief that women should have hair no matter what. I told her that the hair was falling out anyway which she had trouble believing until I explain I was undergoing chemo.

The first thing I noticed is how cold it is without hair.  I put on a red hat but found this head cover in the car so decided to sport it instead.  Gotta laugh or I'll cry.

Yesterday one of my colleagues,  who is also a member of the cancer club, confided that losing her hair was the worst part for her.  I don't know if she was saying that because I was feeling so bad about losing mine but it was very consoling.  I have felt very vain because the hair loss is such a big deal to me.  It was the first thing that made me cry when I talked to the doctor about what the chemo would be like.  I am relieved that someone else viewed it as a big deal and since I do not think of this particular colleague as vain at all, I felt validated in my own feelings of helplessness and loss.  So I am not vain, just mourning the loss of my close friends on my head that kept me warm and happy.

Weekend Update

I am coming to the end of my first 21 day cycle which is the time, I am told, that I will feel the best in each cycle.  Here's an update on the minutae of living with chemo and cancer:

1. My hair finally started to fall out yesterday.  I had hoped I would be the one in a million who were spared, but no.  The odd thing is that my scalp actually hurts a little.  I woke up the other night aware of how sensitive it was from my just lying on it.  
2. I am eating much much better.  Maybe a bit too much.  I am hungry a lot of the time and had to get Paul up yesterday morning early to fix breakfast because I was hungry and nauseated.  I still have a more restricted diet than usual but I have had a few of my beloved Starbucks lattes (nonfat, decaf) this week.  I have developed a passion for sliced apples and cheese.  I also seem to do well with scrambled eggs even during the worst of the nausea.  Hope that keeps because a few things have not worked (like a bagel that they had at the hospital).  
3. The nausea has also subsided but has not gone away altogether.  I have cut way back on nausea meds but still have to take them at least once a day.  I am a little surprised because most of what I have read says the nausea from the chemo should be gone after 4-5 days.  I guess I am more susceptible to nausea anyway given how sick I was during my pregnancies.  Crackers do not help but those lovely little Reeds ginger chews do.  One of the nurses said that if my white cell count and platelets dropped I might experience some nausea too.  That was most likely to happen starting about day 11 and building up through the end of the cycle so that may explain the more recent nausea.
4. I am paranoid about getting sick.  My mother in law has a really bad cough and cold.  She is coughing into her hands and touching surfaces all over downstairs (including the kitchen).  I am hiding in my bedroom.
5. I have been feeling well enough to read and even do a little work but not as much work as my boss would like.  He made a big deal about my not working during disability and that ended as soon as he had to take over about half of my work.  In fact, although he told me not to put anything concerning work I did in writing, he sent me an email instructing me to do a written summary of a conference call I covered this week.  So much for stealth working.  
6. I have been reasonably upbeat so far.  I only had one bout of the blues the other day when I spent the day in my room pretty much alone.  Paul's urologist apparently did a survey of medical literature on the effects of positive thinking on cells and claims there is evidence that positive thinking does help.  I am too fatigued to do the research myself and remain skeptical but luckily my mood has been mostly positive anyway. I try to find humor in the situation if possible since otherwise I would be obsessing about discomfort and possibly even death.

Fighting Words

I have noticed that in the many lovely notes I have received from friends recently that almost to the person everyone refers to my battle against cancer.  I have used a similar metaphor myself.  But I wonder why we have adopted fighting words when it comes to disease, particularly one like cancer.

Cancer is your body punking you.  Cells that should die do not and grow into places they should not.  To stop that process, you have to cut out the offending cells, radiate them out or kill them and other healthy cells with toxic chemicals.  The battle, if there is one, is against yourself and your out of control uncooperative adolescent cells.  

The metaphor could be merely a function of a society obsessed with violence.  Or it could reflect that there is something awful out there (in my case, the chemo as much as the cancer) that needs to be overcome.  One could use a mountain climbing metaphor or a marathon metaphor or something else to show you are overcoming an obstacle.  The chemo kills the cancer and undermines the host for the cancer.  Yet the common wisdom has the battle as being mine to win or lose.

Still Ticking

The past 10 days have been challenging but I am still here and doing ok.  Nothing was quite what I expected and any plans I tried to make to adjust to what might occur had to be adjusted quickly to the reality.  I do not want to relive the discomforts and you certainly do not need to know the details so the best overview I can give is that everything takes longer than they say and you need to be very flexible and accommodating to change.

I get a 12 day break from the infusions and it seems like the nausea and discomfort are subsiding a bit. (Knock on wood).  I had one drama event during the last infusion where I started to have some pain and the doctors became concerned that the Taxol had leaked outside the port.   I almost was hospitalized but they let me go with instructions to watch the skin around the port to see if it changes colors.  So far, nothing  other than the usual pink beige.

I spend a lot of time at the hospital getting infusions.  When I am not there, I am home in bed sleeping or watching TV.  It is such a different life from my normal one.  In my work life I spend so much time on the phone and now I find that even short phone conversations are exhausting and painful.  Luckily I can follow the news on FB and Twitter in small bursts so that I can at least get McNewsnuggets of what is going on.  But I can't right now do the deep dive--read the articles I normally would read to get the analysis.  The other issue I face is what to eat.  Much of the time I do not want to eat and my weight loss of 22 lbs. so far reflects how difficult it is to find anything that I am able to eat.  Weird to lose so much weight in a month involuntarily when you spend so much of your life trying but not succeeding to lose weight.  The silver lining of the otherwise very dark cloud.

War Against Cancer

Today is my last day of "normalcy" for a while.  Tomorrow I begin the grueling 18 week course of chemotherapy necessary to ensure I am not on the wrong side of the survival stats for ovarian cancer.  I bought the L-Glutamine at Lindberg yesterday.  It is supposed to help with neuropathy (including the dreaded tinnitus) and mouth sores.  The directions from the doctor's office say to start it 4 days after the chemo cycle, which makes no sense to me.  The cycle is 21 days and there are 6 of them.  I have chemo on days 1, 2 and 8.  It would make sense to me to take it on days 3-6 or 9-12 but literally after the cycle would be days 1-4.  (I had similar trouble understanding the instructions, or should I say non-instructions to apply for disability. The cover letter from HR does not spell out that the doctor needs to fill out 2 forms- one for EDD and one for HR.  Neither I nor Paul saw that there were 2 forms in the piles of documents they sent and of course we now have delayed getting in the paperwork about 2 weeks)

I am wracked with self doubt about my ability to get through the chemo.  People tell me I am strong but I am not very good about discomfort and pain.  Sometimes I get perspective.  My friend with stage 4 lung cancer is in pain all the time and manages so I should be able to manage some nausea, mouth sores and stomach problems.  I also try to find reminders that others have made it through this regimen and gotten to the other side.  So many people I know have cancer now and many of them have gotten through the harsh chemo.  Yet I worry that I am not as strong as they are, or perhaps I am more sensitive.

The other day I watched a video of Hillary Clinton at the Democratic convention in 2008  talking about the alleged advice of Harriet Tubman to "keep going" in the face of various adversities. http://www.facebook.com/video/video.php?v=1256300900953&ref=mf  (Alleged because historians dispute whether Tubman ever said what is attributed to her. http://thecaucus.blogs.nytimes.com/2008/08/27/did-harriet-tubman-really-say-that/ ).  I find the message inspiring for personal reasons as well as the political ones Clinton advocated.

I also started to see this situation as similar to those going into a war zone to fight.  You are not sure of what will happen, you know that it will be bad and possibly traumatic but you have no choice.  You have to go.  You have to fight despite the fear and uncertainty.  So I am putting on my metaphorical battle boots and picking up my imaginary weapon to head off into the field to engage in my battle against cancer.  I have to do it;  I have no choice if I want to get out alive.