Round

So I found a treatment that I really like - sunbaths!

With my new diagnosis of vitamin D deficiency (on top of the much scarier recent diagnosis of endometrial cancer), both my doc and my dad (who is also a doc) recommended daily sunbathing of 15-20 minutes in addition to prescription supplements.

So my hubby moved the car and put the lounge chair in the most sun-soaked part of our garden and yesterday I started my ‘treatment’.  How fun.  I am not wearing sunscreen anymore (except a stick I am putting on my nose and lips), and I go out there between 12 and 2 with a pitcher of iced green tea, a stack of magazines or a book, and my iPhone.  I set the timer for 15 minutes and depending on how I’m feeling and if it’s cloudy or sunny I might stay a little longer.  Today I looked up several recipies for this week and also read 3 issues of the New Yorker (weekly magazines always feel like such pressure to me, with the New Yorker as the only exception, because it matters much less if you fall behind).

And the fridge is full of high-antioxidant and yummy foods - avocados, mushrooms, zucchini, blueberries, cauliflower, tomatoes, etc.

Luckily for me I’m working from home most of the week so my sunbaths will be able to continue.  It’s nice to have a good and relaxing treatment to mix in with all the others these days.  I think I’ll need to go across town to the office twice this week (my Blackberry broke and can only be repaired through the company contract) but I can still schedule that around peak sun exposure hours.

Things w my husband are much better.  What’s hard is when we are out of sink in terms of being able to give support and need support.  I’m a sink hold of need these days, and he’s crushed with work (made much worse this past month by the number of things he pushed off to be with me during the diagnosis phase and my surgery).  Plus he has his own emotional issues related to my illness to work through.  I didn’t see my counselor last week due to scheduling conflicts, and I suspect that added to my neediness, so I’m not only making sure I’m booked with her consistently, I’m also thinking of changing to someone else (recommended by my GP).

Last night I had a stupid fight with my husband over almost nothing.  In reality, it was that I was wanting to be comforted and he was wanting me to be “normal”.  It took me several hours to realize how anxious I was in general - my mind whirring at a million miles an hour.  In the end I decided to take a sleeping pill because I felt that not much else would get my mind to settle enough to sleep.  I couldn’t even get myself focused enough on being miserable to have a good cry (which often works to relieve stress & get me to sleep).  Not that I’ve been crying much, in fact.  I’m wondering a little if that’s a problem - like I’m doing such a good job of holding it together on the outside that on the inside the stress emotions don’t know where to go.

I’m guessing this doesn’t make any sense to anyone reading this - it feels pretty convoluted in my mind.

I went to the gym today and did a 45 min elliptical workout that really kicked my butt.  I’m out of shape.  Still, I’m trying to be gentle with myself and allow my body recovery time from the surgery.  So if I go tomorrow it’ll be a short session, and in fact I’d be better off either walking or going to the pool.

I also spent several hours back in the data mines, reading and saving more clinical studies on endometrial cancer and it’s various treatments.  While I like to have information, it’s also clear to me that doing that for several hours makes me nutty.

To top it off, I got some lab work back yesterday that scared me - several things were abnormal - C reactive protein was very high, as was the ESR, both of these are measures of inflammation.  My PCP who is normally impossible to move into ‘mildly concerned’ was considerably concerned with these (repeating them next week).  These high levels of inflammation could be early warning signs of autoimmune disease or are often found at the same time as cancer (but mine is supposedly non-invasive so…).  In any event, it’s another worry on top of the others.  I am also insufficient in vitamin D, and so have started a 3 prong approach to that - taking a prescription bolus of 100,000 iu a month, taking daily 15 minute sunbaths, and switching to a face cream that does not contain SPF.  I’ve read too much about the link between low vitamin D and cancer to give two hoots about looking older, and I think the risk of a skin abnormality in the future is a moot point if I’m not healthy RIGHT NOW.  When I get to the US at the end of July I’ll also pick up a good-quality high-dose vitamin D supplement.  Right now I have a supplement of 800iu but that is obviously not enough - I’ve taken that much for at least a year.

Better news : I finally switched out my summer clothes and found that several items that are too big - 2 pair of jeans that I bought in desperation going into last summer because I couldn’t find ANYTHING to fit me here in Paris, and they never fit well (but cost a fortune).  Well, I’m down 17 pounds now and they are ridiculous looking and I decided to get rid of them.  Yeah!  I also went through some of the other boxes of stored clothes - which are labeled with the weight I think I need to be to wear them, and surprised myself by finding a pair of black capris that didn’t fit last summer but are okay now, and found several other items that I could get on - they’re not ready to be worn in public, but the progress is clear.  They also feel like new things since they’ve been too small for over a year (and won’t come out this summer - I don’t intend to open that box again until I hit the weight marked on it, so it will be several months more.

I saw another doctor yesterday for a second opinion on the course of treatment.  Of course, just because this isn’t confusing enough, her opinon was different from the other doctor - her suggestion is a hysterectomy right away, but letting me keep my ovaries.  After the hysterectomy then I could to IVF stimulation, collect the eggs, and put the embryos in a gestational carrier (surrogate).  It’s probably the suggestion that makes the most sense, especially as the risk of my own pregnancy seems too high, and it takes away the biggest risk - that there are cancer cells left behind in the uterus that could grow with time or with hormones (from IVF or pregnancy).  We have a telephone consultation with a US gyn-onc expert next week, and hopefully we will start moving towards a consensus.

Checking in on the stress management (ha!):

• Finished watching Stripes
• Read a few pages of Rabbit at Rest
• Played “Brain Power” on the Nintendo DS
• Had coffee with my friend S (who is the one who found the second opinion doctor)
• Meditation before sleep
• Drank green tea (a yucky one that I have decided to throw out)

I was officially back to work yesterday but I didnt do much - I had the medical appointment in the morning so didn’t get on the computer until mid-day, and then left to have coffee with my friend late afternoon, so only worked a few hours - but slowly getting back in the swing of things.   Sounds like other than a quick trip to London in 2 weeks I won’t travel much before summer vacation, which is fabulous.

I have come to realize that I need to find a way to make sure that every day I am reducing stress.  I will count healthy cooking, exercise, meditation, artistic projects, organisation/decluttering and attacking old projects as part of the ways I am doing this.  Don’t worry, I won’t do all of that every day!

Yesterday is when I came up with the idea to track this - because for several months now I’ve been using the “gold star on a calendar” approach to getting some exercise in.  No kidding.  An old school paper calendar and some even older school litte star stickers.  Works like a charm.  Every month I want MORE. When I look at several days without stars I am sad.  I was excited because I’d been noticing that since surgery there were no stars, and yesterday I earned one (I did an easy 30 min on the elliptical at the gym).

So I thought, I should keep positive track of some of the ways I’m reducing the stress too - so here we are.

Wednesday, July 1st :

• 30 min elliptical
• 1 hour art project
• Decluttered one shelf
• Organized medical files for bringing to doctors
• Watched “Stripes” on my iPhone - funny, I love Bill Murrray

Monday (when I wrote my last post) was my first really good day in the month since I’ve been diagnosed.  I had a plan, I felt hopeful, physically I was on the mend, etc.  I had an appointment with the general oncologist at the end of the day that I was so close to cancelling because I thought it was unnecessary.  But the fact that he is a friend of a friend (a friend who has moved mountains to get me the best care in the country) and that my husband is still working his way through these painful issues around pregnancy etc made me keep it.

And this is where it gets worse.

I sincerely hope none of you ever have to deal with cancer, but if you do you should know that cancer doctors are sub-specialized, and the one who takes care of you is someone who specializes in your kind of cancer.  For gynecologic cancers (cervix, uterus, ovaries, etc) it’s a gynecologic oncologist (gyn-onc), a very specialized field.  For some other cancers there are other sub-specialities too, and then the rest fall under ‘general’ oncologists - who deal with nothing but cancers, but not of the kinds that the sub-specialists take care of.  So my main doctor now is a gyn-onc, but this friend of a friend is a general oncologist.  So he knows cancer really well, but is not at all an expert in my kind of cancer.

What he said was that he thought I should have a hysterectomy, immediately.  That we were taking a big risk by waiting and doing the hormonal treatment, and that the idea of a pregnancy (and thus 18 months of waiting before a hysterectomy) was insane.  He didn’t mince words, didn’t beat around the bush.  He’s the only medical voice who’s been so clear with me, and he basically spoke directly to my deepest fears and scared the crap out of me.  I was so annoyed, I had left the house for the appointment feeling so good I was even wearing mascara - for the first time in a MONTH.

I do appreciate his honesty, and it’s been good because it forced me out of “obedient patient” to taking control again (and really, who are we kidding? I am about as far from a docile, non-challenging patient as you can get).

Bizarrely it’s helped with my husband - I guess because the doctor told him very succinctly and very strongly the facts that are behind all of the fears and thoughts I’d been having about carrying a pregnancy.  That aspect is good, because I think my husband is okay now with some of the other paths, and the doc did a good job of boosting my credibility.

He also made me second guess everything.  I’ve fired up all my networks, and will talk early next week with a US gyn-onc friend of the family (who I will also ask to put me in touch with a gyn-onc who is really experienced in fertility preservation), and I’ve also decided to go for a second opinion here in France (another expert doctor being arranged by my friend).  I also spent hours and hours researching clinical trials and medical journals and other scientific evidence in the field.  I skimmed hundreds of abstracts, downloaded about 30 trials, and started a nifty database.  I have the known facts myself now, and can help put what doctors say in perspective. This doctor we saw admitted he is not an expert in this field, but what he said about early erradication of all traces of the cancer makes sense, and

I didn’t get much sleep for the past several nights.  I’m still working through the shock of what he said to me - I haven’t been able to share it with my family or friends yet.  I am finding it so incredibly hard to give up the dream of having my own baby - the difficulty I’m having giving it up is making me wonder whether I’m holding onto it in an irrational way (a way of denying the disease).

In any event, tomorrow I am seeing another Gyn-Onc, in hopes of having 2 doctors telling me the same thing.  Keep all fingers crossed that this one says keeping my uterus long enough to harvest eggs is an option that makes sense.