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.

Take a Haircut, Anxiety!

Yesterday I cut my hair very short.  It is essentially a man's haircut now with lots of obvious gray. I did it to get myself used to being bald, to have a more accurate sizing for a wig and to have less hair to fall out in the next few weeks.  I might shave it at some point. We will have to see how the hair falls out.

Cutting my hair, however, triggered some anxiety in me last night that I had been staring down but holding at bay.  Only 4 days left to starting chemo and if all goes according to plan, 126 days after that until it is over.  Of course, my anxiety became full blown in the middle of the night as I thought about various side effects.  One that loomed large last night was tinnitus.  I love my hearing, which is much better than most at my age.  The thought of having ringing in my ears really upsets me.  Of course, I also think about the life threatening side effects -- neutropenia, which the nurse said occurs in 60-70% of cases, and kidney failure.  Will I be able to keep down enough water on days 4 and 5 to avoid having to go to Cedars to be hydrated?  Will my white blood cell count drop so much that I will have to be quarantined or get another blood transfusion?  If I have to go to the local emergency room, will they really have problems reaching my doctors at Cedars, like one person recently suggested?  So many unknowns and so much out of control for someone who needs to be able to control as much as possible.

I bought a cheap wig that I plan to have cut this week to resemble my former hair style.  I also have gotten many comments that my hair looks cute, punk, stylish, etc.  However, I cannot help thinking that getting the haircut and the wig is the final piece of control that I have for a while.  My anxiety arises from the unknown as well as the suspected discomforts and dangers.  Somehow I have to brace myself for this long process and stop trying to anticipate every problem I might face.   I need to cut back on the analysis and focus on the present, but not too much if the present is filled with discomfort.  I will make it through this.

Observations from the Bedside

Not much to report from my bedroom where I am still trying to recuperate from surgery.  It is less than a week to starting chemo.  I am getting my hair cut short on Saturday so that when it falls out there will be less of it.  Kate and I are also going to do a little wig shopping if I have the energy.  I find that if I sit up for more than a few hours, I get very tired. I suspect that it has something to do with the position of my recently cut up abdomen.

Some random observations then:

1. I am reading a book called Sidetracked by Henning Mankell, the 4th Kurt Wallander mystery.  I am more sensitive than usual to the descriptions of deaths, perhaps because of their extreme nature.  So far, one person has died by setting fire to herself and 2 have been axed to death and scalped.  Yuch.  
2. I read a few articles in the NYT business section this morning about China.  One was about a person who believes China's economy is about to collapse, like Dubai's, because there is too much credit and too much production based on loans that are likely not to be collected.  The other was about China raising an important interest rate to stave off borrowing and inflation. Some editor at the NYT has a sense of humor.
3. Unemployment is still at 10% which is, of course, bad for Obama and the mid term elections.  Worse, in my mind, is the unemployment rate among 18-24 year olds which is over 16%.  These were the voters who embraced Obama's message of hope and now are awakened to harsh reality that rhetoric does not equal outcomes.  Welcome to adulthood my young friends.
4. Expectations of Obama have been too high in any event.  He cannot work miracles in what is essentially a conservative society.  We still are better off than we were a year ago under the Bushies.  We will soon have a health care bill and the EPA is finally stepping up again to protect the environment.  Sales were up over Christmas and the stock market is up so hopefully people will start spending again to shore up our consumer economy.  But not us.  We owe the government too much.
5. One of my FB friends wondered why certain Catholic countries, like Portugal, Spain and Mexico, could accept gay marriage and the non-Catholic US states of NY, NJ, Maine and California do not.  He asked, "Don't they read the same bible?"  The answer is "no".  Reading the bible literally is reserved to the United States with other countries (except perhaps Uganda) not adopting that evangelical view.  Other countries see the bible, like Karen Armstrong describes, as stories and myths to guide behavior and morality,  not to be taken literally.  Another wonderful contribution of our "religion free" state.
   
6. I have started watching TV again and realize how much I hate watching the same commercials over and over.  I watched an episode of Modern Family (my new fave) on Hulu yesterday and fully understand why all the young people I know now watch TV that way.  Only 1 minute of commercials instead of 9 or 10.  Soon I will have a whole new set up in the bedroom for TV-- 40 inch high def TV and Verizon Fios TV with a new DVR so I can watch HBO (hello Big Love) and movies from bed.

It's Not Fair . . .

You may have noticed a bit more cynicism and negativity from me in recent posts.  Trying to get my mind around my recent diagnosis of ovarian cancer and the upcoming "rough" course of chemotherapy has made me a bit cranky.  I did not much feel like celebrating the new year given that I have five to six months of discomfort ahead of me in 2010.

At this time I am less concerned about or focussed on surviving than I am on how bad the side effects of the chemo will be.  My prognosis is good if I make it through the chemo--a protocol that includes Taxol via IV and cis-platinum delivered intraperitoneal (IP) which means that they inject it into my abdominal cavity through a port that my onc-gyn installed during my surgery last week.  The protocol consists of six 21 day cycles of chemo delivery.   I get the chemo over the course of 3 full days  (i.e 8 hours each day of infusion) on Days 1, 2 and 8 and I need to be hydrated for 4 hours/ day on Days 3, 4 and 5 in   each 21 day cycle.  That's a lot of time being hooked up to an IV or IP.  I am not sure how I will spend the rest of the time because I do not know how debilitating the side effects will be.  I am assured of having fatigue, hair loss and anorexia.  I probably will have some abdominal bloating and digestive problems as well as nausea for which I will be given medication to ease the severity.

I am trying to prepare for the hair loss which is probably the only side effect for which I can plan.  I am cutting my hair very short rather than shaving it because I need to ease into its loss.  Even though I wear my hair relatively short, I am very fond of it. I have also been lucky to have thick eyebrows and eyelashes all my life so I am dreading their loss.  I expect my hair will grow back in gray rather than the blonde streaks I have sported for so many years.  It will be another "scarlet letter" for me, announcing to the world that I have cancer.  My son has, however, come up with an idea for a slogan for me to go on a hat or t-shirt (preferably in teal, the apparent marketing color for ovarian cancer).  "It's not fair.  Not my hair!"  I love this slogan!

I am working up the strength for this ordeal but reserve the right to be crabby and negative.  I hope you all understand and accept that I am the one making this journey and will do whatever I need to do to get through it.  Please bear with me.

New Years' Resolutions

In 2010 I resolve:

1. To lose weight
2. To lose my hair, eyebrows and eyelashes
3. To lose (or alter) my taste and smell
4. To lose sensation in my fingers and toes (neuropathy)
5. To learn to tolerate nausea and vomiting
6. To learn to tolerate constipation and/or diarrhea
7. To learn to tolerate spending full days hooked up to an IV and IP
8. To make it through at least 4 cycles and possibly the full six
9. To try to live as normal a life as possible notwithstanding 1-8 above and overwhelming fatigue.