I've started a stress-less list

After my dad (a doctor) suggested sunbathing for vitamin D, I added it to my daily routine. I'm working from home for a few weeks, and heading out to the lounge chair between 11-1 is do-able and about the best thing that's happened to me in a few months.

I actually started to keep a daily list of the various positive things I'm doing to take care of my health and reduce my stress. The list part is all me (Type A personality, etc) but the stress-less part has turned into a real pleasure. I find myself doing something silly, like reading a few pages of a joke book, just so I can write it down.


Here's an example list from the last 24 hours :

• Took a sunbath for 20 minutes
• 40 minute walk
• Went to my psychologist and made another appointment for next week
• An hour of art project
• Decluttered my 3+ items for the day
• Made dinner for me & my husband – mussels (first time ever & a success), roasted green beans
• Made muffins for E’s breakfasts for this week
• Watched the end of Syriana DVD
• Finished booking the California vacation hotels
• Read the New Yorker for 15 minutes
• Went through a pile of old clothes
• Drank green tea
• Handled a bunch of professional email
• Meditated 10 minutes (felt longer!)
  

It's a lonely road

I am sick. I hate saying that, but sometimes I have to face that reality.

I got some test results back today, and in addition to cancer, it turns out I'm also vitamin D deficient, hyper cholesterolemic ( no surprise, but the numbers are BAD), and crazily inflammed (sed rate and CRP both severly out of normal). I spent an hour on Google trying to figure out what it all means.

Most of the test results are probably overlapping the cancer diagnosis, and most don't require treatments. I have prescription-strength vitamin D to take, and my dad suggested daily sunbaths - which is the most fun treatment I've had in a LONG time.

E moved the lounge chair so it catches the most rays, and I head out there with a pitcher of iced tea or water, a stack of magazines or a book, and my iPhone & set the timer for 15 minutes. I've also stopped using my strong SPF face cream, and just wipe the stick on my nose and lips so I don't look like Rudolph.

Introducing Dr P

Today I went to the Instutit Gustave Roussy which is THE big cancer center in France. It's in one of the Parisian suburbs and it's a huge hospital complex that does nothing but cancer.

Looking at the website yesterday to orient myself I was really hit by how serious this is - I mean this is the Big Guns place, the center that partners with Kolinska and MD Anderson for Europe. Gulp. But the truth is, this is where the best experts are, and my friend Sophie had offered to get me in to see the endometrial expert, and with our recent questions I jumped at the opportunity.

Arriving at the IGR campus it was full-on cancer - bald, thin patients on IV drips sitting on the benches outside before you enter into the most modern and American-looking hospital I've seen since I've been in Europe. The system and the hospital is very organiszed, very much like the US (except maybe the price, which was ... €22, the lowest physician consult fee that exists in France). Crazy.

Dr P was thorough and impressive. She took her time to take the full history, re-read all the various test results with me to make sure she had the context, and basically immediately estabished herself as the most trusted of all these docs I've seen. Her perspective is also different from both Dr M and Dr C - Dr C is a general oncologist who knows nothing about endomtrial cancer, and Dr M is a gynecologist trained and specialized in gynecological cancer. Dr P is a oncologist trained in gynecologic cancer.

Bottom line from Dr P :

• She believes that while the cancer is staged early, the only real way to know if it has had any invasion is a hysterectomy. A D&C can only catch so much. So there is a risk that there is invasive cancer still present, and that even after hormone treatment it would still be present.
  
• She sees a risk in doing a stimulation for IVF on the endometrium
• She sees a risk in doing a pregnancy on the endometrium
• She does not believe we need to move with enormous speed, but that we shouldn't take forever to decide either
• Her recommendation would be to have a hysterectomy now and keep the ovaries. To do an ovarian stimulation afterwards provided the hysterecomy pathology comes back clean. At some point in the future might or might not remove ovaries. She would NOT do a stimulation on the current endometrium, however, she thinks this could stimulate small cancer cells that might be present.
  
• She is going to discuss this next week or the following one at the cancer board, where it would be also discussed w a surgeon and they would also give their opinion on whether or not to have the progestin treatment during the summer (presumably the hysterectomy would be in late August).
  

One thing that is for sure is that I had enormous confidence in the facility and in the doctor.

Her suggestion seemed the smartest middle road that I've heard to date, and is not one of the options I've heard from the docs nor seen discussed in the clinical literature.

So sad, so scared, so confused

I saw Dr C today.

It was the first day in a month that I actually felt normal. Finally felt pretty much pain free all day after the surgery, and felt the worry behind me - we have a plan, it's not the scariest medical scenario we feared, and it will still allow a chance for us to have a child - possibly even our child.

It's been stressful between me & E because we haven't seen the pregnancy / gestational carrier thing in the same way, and it's been difficult to discuss because he doesn't feel like he has many options (except to deny me the possiblity to be a mother) and I feel like it's riskier for me and less likely to succeed in a baby that is born healthy.

I did a bunch of stuff around the house today, and thought seriously about cancelling the appointment w Dr C, but he'd been nice to us before, and I thought he might have some ideas of experts who could help us work out some of the questions around risk of pregnancy, so I kept the appointment. But I was so sure it was unnecessary that I put on makeup for the first time in several weeks - and mascara for the first time since May 25th. I've just gotten used to crying pretty much any day - even if it's just a short outburst, so rather than be all racoony I try to prevent the terrible eye makeup problems altogether.

Our visit w Dr C shattered the fragile calm. Now, he is a general oncologist, not a gynecologic oncologist, so he doesn't know the specifics of these kinds of tumors or treatments. But he knows cancer, and he knows that cancer caught very very early and completly cut out is the best kind to have. And he told us so in no uncertain terms. Basically said that since they found cancer again now in June that we were playing with fire by doing anything but a total hysterectomy right away. Said that he thought the risk of going through a pregnancy (and the additional 9+ months of having the cancer around) was really pushing what was medically advisable. He did say that an egg collection (for use in a gestational carrier), done sooner, would be a better option, but then asked why we wouldn't do that right away instead of doing the 6 months of progesterin treatment first.

Basically he scared the crap out of me.

Unfortunately he didn't scare me into not wanting to at least *try* for a baby that is genetically mine, even if I don't carry him or her. I can't stop wanting that, no matter how hard I try to make my mind accept it. Not being pregnant myself has been easy to accept - and I didn't expect it to be. But giving up the genetic link isn't the same.

He did push me into action. I've basically spent the past few days trying to get cancer-thoughts out of the front and center of m mind (where they had lived for about a month). Now they're back.

I'm trying to set up to talk to a gyn-onc at the NIH, and I need to get on the ball about getting my 3 docs talking together if we decide to go ahead. I'm pretty sure I've got too many questions about my treatment right now to go ahead and start drugs if he does send them to me without further discussion - at the least I want a clotting evaluation, and I think it makes sense to make sure the 2 fertility docs are completely onboard with whatever we do for this treatment. Including how long it will go. Still don't have the final path report with grade and hormone receptor status.

I also finally started seriously digging into the scientific literature myself. It took several hours but I think I found most of the relevant stuff. I saved it all to disk and will need to print and organize it, but it's pretty much what I'd though in late May - not very rigorous. Most typically are small case-report type abstracts, andthe most rigorous are 'studies' which are retrospective looks at a given medical center's collective experience over a number of years, in general with around 20 patients with conservative treatment for endometrial cancer (and in some cases another group with the same treatment for complex atypical hyperplasia). Not rigorous science, not prospective, not controlled, not terribly convincing.

The most reassuring things that I found out were that 1) I seem to qualify for the conservative treatment, given that I am Stage 1A, married wanting kids, and with a well-differentiated cancer (assuming this gets Grade 1 & is hormone sensitive on the final pathology, of course). 2) Most cases of "failure" of the conservative treatment with progestins is that the cancer at stage 1A is still present after treatment. The cases of tumors getting more aggressive or patients coming back with mets or things later seem to be limited to just a few cases, some of which were transplant patients taking immunosuppressants, or a 24 year old who was 'lost' to follow up for 2 years, only to re-present with cancer again, and who then again refused a hysterectomy - who later had more invasive disease.

If I sound like I'm trying to justify a decision to stay the course you'd be right. Overall I was pretty reassured by what I read - at least the criteria for who is eligible seem pretty solid, as does the monitoring program. I'm going to try to collate the various stats I gathered so I can have a better picture of risk (and share it with E), and also so that I can get a clear sense from the fertility people of where my chances stand and balance this out a bit. If I have higher chance of recurrence than a take-home baby with my eggs, that math won't work, even I can see that.

But maybe there is a way to move faster to egg collection if we are not planning a pregnancy ourselves (something it seems E accepted much easier today, hearing it from Dr C).

This is muddled - I'll need to come back to edit it when its not 4am. But maybe now I can sleep.

On the mend

I am on the mend physically, emotionaly & spiritually.

I was without pain meds all day yesterday, and did fine. Today I wenT for a 20 minute walk, plus to the market, and I'll probably walk either to or from another appointment this afternoon (but not both directions just yet).

Most of my puncture holes from the laparascopic surgery are healed, and I'm just keeping little bandaids on them. The bigger incision in my belly button is taking a bit longer, but is still getting much better. I think next week I'll be able to take out the few stitches that aren't resorbable.

Emotionally too I feel better, stronger, more stable and more relaxed. I've started a few art projects which I hadn't made time for in years, and have been decluttering all areas of the house in a very subtle but undeniable way.

I've never been a very spiritual person, and not into new age touchy-feely stuff that my mom liked when I was a kid, but there is a shift here too. I am experimenting with meditation (so far, so good!), and find myself full of kindness, compassion, and forgiveness towards others. I'd sum it up as 'life's too short to not be nice'.

I'm also still eating very healthily and taking my vitamins (the pic).

I'm able to think of things other than cancer, and probalbly even have a tendency to ignore the cancer stuff a bit these past few days.

It's not denial, just a new ability to push it aside for a while. Last night relaxing with my husband we both felt it was our first "normal" evening in a month.

I'm also ready to tell more people. I don't want my family back home needing to worry about who knows what, so I have a few friends I need to call this weekend.

Best news we could hope for

Today we got the best news we could hope for given what's been going on since May 25th. 

The abdominal wash to find cancerous cells found NOTHING (yeah!) and the D&C material had only one small cancerous lesion, leaving me diagnosed with cancer but with Stage 0 which if you know anything about cancer is the best you can ever hope for (it means it's just cancer on the surface, not penetrating into anything).  Before we dance on the rooftops we do have to have the final pathology report (next week) which will have the hormonal status (estrogen, progesterone) which in turn will determine which drugs I will take for the 6 months of hormone therapy.  It sounds like I'll also have a progesterone-infused IUD during that time, all designed to make my uterus ultra-quiet and all the bad nasty cancer cells go away. 

At the end of this they'll do more testing and if all is okay I'll get to have a go at IVF and will have to make many choices about that (which I'll discuss another time). 

It has been a really tough day.  I took an Ambien last night because I havent slept well in days. Woke at 10 still groggy.  I took 2 hours to shower and get dressed just so I could keep busy before my appointment.  I was nauseous all through lunch and barely ate 5 bites.  I was trembling in the taxi going to the doctor and snapped at my husband's secretary who was reluctant to interrupt him while on the phone (he was supposed to already be in the car).  Luckily had a very short wait at the doctor's office, because I was climbing the walls. 

My husband and I went from elated to realistic to sober and both of us cried a lot at tonight at the loss of normalcy and the loss of being able to have a baby really on our own.  I've known this longer than him - he has always thought that in between fertility treatments we might just sneak one past the goalie, a dream I gave up a long time ago.  I also have been reading a lot these past few weeks and know the risk of carrying a pregnancy with endometrial cancer is probably going to be out of the question for me (even if my doctor might allow it) but he hadn't done the same homework and still believed that I could carry our baby, so it's actually been a very sad and emotional night for us.  Relieved, for sure, that it's not a struggle for life for me, but pain for the hard choices down the road. 

Add to it that I am morally comfortable with other routes to become a mother - ideally a gestational carrier with my biological child, second best a donated egg or embryo with gestational carrier, and also okay with adopting.  He's not at the same place, and he may never be. 

But one of our hard, tearful conversations tonight is that I can't agree to a pregnancy because he won't agree to a surrogate.  I need to make a choice to be pregnant believing it is safe, not to experience it as 9 months of pure terror of cancer growth.  That would be a horrible emotional process for both me and baby (plus the very real physical risk of cancer growth during 9 months of hormones). 

Unbearable unknown

It is absolutely awful to be waiting for the results from the biopsies, D&C and the pelvic wash which we should have on Monday.

I am consumed by worry, guilt, fear when I am not able to try to fake it through the "think positive" mentality.

I'm also still really tired from the surgery (probably the anesthesia, as the pain has been pretty minimal), and during the day usually manage to keep busy and therefore keep myself distracted, but at night... wow, it's tough.

My GP gave me a prescription for some mild sedative to sleep but it doesn't help at all, and I have generally been awake and anxious until about 4am each day. I'm going to try to dig up an Ambien tonight because I really need a decent sleep. I also go into moments of being very sad and very scared and start to cry, and it's hard to come out of that despite the strong supportive tender arms of my husband (and my mom). At night the only thing that seems to calm my brain enough for sleep to come is playing sudoku, I guess the logic rigor repetition of it gives me another focus and eventually gets me to calm down.

Out of the hospital, into the waiting

I was happily surprised to be sprung from the hospital after only one day.

I slept pretty much all day yesterday, vaguely remembering the catheter being taken out (glad I didn't remember that more!) and vague memories of my mom, my husband, the nurses coming and going.

I was able to get up to pee late afternoon, and a few times after that, thus avoiding the dreaded bedpan. The IV hurt less than any I've ever had, which was nice.

The pain control at the hospital was excellent, with the bottles changed on time each time and the doses clearly sufficient. I had slight pain when I stood up to pee, and a twinge or two as I moved around, but really almost nothing.

I was surprised but pleased they let me out today. I fibbed a bit about having gas (but had it within half an hour of that little lie) and was feeling pretty well around the hospital this morning. Of course, actually heading home is always harder than you expect, and I came home and promptly slept for several hours. I woke up, ate, and slept a bit again, but am now trying to stay awake enough to get a good night's sleep.

I'm also not as good at keeping to the pain med schedule as the nurses are at the hospital, and have had more pain in my belly than I'd had at the hospital. But it's quite manageable, I've had much worse pain. I'd say it's a 3-4 on a 10 point scale.

Dr M called yesterday and said the surgery had gone well. The coelioscopy (lap) was difficult because of my big belly, but they got it done. He said that everything looked ok from what he could see (but of course what is really important is what the pathologist can see). The uterus, however, had "suspicious" spots which he thinks will still be the cancer. I'm guessing a Stage 1A at this point is the best I can hope for. No one has mentioned the grade of tumor so far, so I need to ask about that.

I'm off work until Wednesday the 1st of July. I'm guessing I'll be feeling much better by then, but will use the time to handle some projects around the house and just take care of myself.

Appointment with Dr M to get the results and treatment plan is next Monday at 3:40pm.

The night before

A lovely betadine shower

A genital shave that left a small tuft

A few things to comfort me tonight - Marimekko fabric bag that I love
and hadn't found a use for until today, 2 aromatherapy oils from
Neal's Yard - in Calming and Optimism, finally opening the final novel
in the Rabbit series.

Not pictured : the sweet nothings whispered by E, the concern on my
mom's face, the sleeping pill...

CT is clear

The abdominal-pelvic CT scan of this morning also had a good, negative result.

The procedure was easier and less scary than the MRI (I also know more now so had less reason to be worried).

The machine had this cool light up system of a smiley green guy and a smiley yellow guy holding his breath, which really helped me follow along during the exam. During the MRI the machine is so loud and I wasn't expecting the 'hold your breath' instructions, and since they arrived in French while I was worrying away in English I had to explain to them after the exam that I hadn't really done it at the right times. Today I knew it might come and I had discussed it with the tech to announce to me before beginning, but since the machine is quieter & I was expecting it, the little light up men were the cincher and I did perfectly. They also made me smile, which in itself was a huge thing.

I insisted a bit for Dr M to read the CT (which the young Dr didn't too much appreciate, but Dr M did make some minor changes to the reading, and she remembered me and re-read the MRI from 2 weeks ago at the same time, so it was very reassuring to me (especially as she is considered one of the top 2-3 people in pelvic imaging in France.

Still, that period of waiting between taking the test and waiting in the exam room for the results is hell. You sit and look around the waiting room and figure that aside from a few sports or activity injuries, almost everyone is playing the same roulette game - everyone hoping it's not them who's going to get the news of a suspicious spot, a lump getting bigger, or coming back...

CA 125 results

The results of the CA 125 test was supposed to arrive in the mail today but it didn't. Because I'm not in Paris for mail delivery again until Wednesday night I called the lab and pushed to get the result via phone, as even last night the worry was rising.

It was normal, 22.6 (under 35 is considered normal).

One less thing to worry about, but I'm guessing it will be a long time before I don't have severe anxiety as I wait for test results...

Dr M - second visit

I saw Dr M today where I gave him the details of everything in the past and he ordered some additional tests. He also said he would get a path report from the endometrial expert pathologist (this is the opposite of what I was told yesterday by my referring doctor's office). But he said he knew the guy very well and that he'd take care of it. I was happy, as I had been quite frustrated yesterday being told that the other pathologist 'had agreed' with the first one (as reported by the first one) and there would be no more to it than that.

Dr M ordered a CA-125 test along with CT scans of the pelvis and abdomen. The blood test I was able to have done this afternoon, the CTs will be next Thursday. I also need to be admitted the 15th in the evening instead of the 16th in the morning, which will suck.

Dr M also said there was nothing to change regarding diet or other environment factors. He is apparently not a believer in all of that (although he said they are finding breast & uterine cancer more often in younger women these days, probably due to the environement). For a week now I've been drinking green tea (which I don't like) and E has repeatedly pointed out to me that forcing myself to do so is probably futile and making me feel worse. Still, I feel like I get a bit of control by doing so, so I continue to hunt for the types of green tea that are at least palatable if not delicous (jasmine, a flowery blend we have from Mariage Freres, and green tea w mint).

For now, not much else to do but wait. Tonight I travel to London, back late tomorrow evening. Again on the road from Sunday evening - late Wednesday. At least when I'm traveling like that and working hard I am not thinking about this...

Dr C - first visit

Yesterday E & I saw Dr C, who is the general oncologist who is a good friend of Sophie's who was just generally helpful and kind. As we've now been far enough into this, we didn't have so many questions but just hearing the reassurance that this was not fatal and that Dr M is really excellent was very reassuring.

It's clear that if the surgery on the 16th is clean we'll have to make a choice on the degree of risk we are willing to take to try to have children. Dr C said that 'if you already had kids we wouldn't even be discussing this, we would have already done the hysterectomy, and that would be that'. We know that we are raising the risk if we do anything but a total abdominal hysterectomy, but Dr M thinks there is a good chance this can be done safely for a few months as long as everything comes back as a non-aggressive grade and still within stages 0 or 1A. In any event we won't know that until after the surgery, and apparently it takes about 8 days to get the path report back from this here in France. Dr C did say that he had a lot of faith in Dr M's judgment on this topic. We'll see him again after the surgery and path report, really just as a knowledgeable external observer, since we considered him smart and honest.

We also went to dinner at Montparnasse 25 which is the gastronomic restaurant that is one of our favorites in Paris. We tend to go every few months (E goes more often for work). It was our first visit in several months, and it was a good thing for us, as it's part of our 'normal' life and time spent together, and something we both really enjoy. A huge part of me just wants to be at home and alone, so going out to a nice dinner was a good thing. The dinner was good too, with a really nice wine and both my starter and the sole were really amazing. Yum yum.

Dr M - first visit

First visit with Dr M was Friday the 29th, at the end of the most hellacious week.

I had the pelvic MRI at 11:30 and was told to call Dr M afterwards. The night before the MRI I think I slept about 10 minutes total. I was completely freaked out after having seen the pathology report from last June which already showed atypia and I had never seen, never been followed up. I was seriously wigged out, and was so worried that the MRI would show cancer everywhere. I was crying as the bang bang bang of the MRI whirled around for 20 minutes.

Waiting for the results was hell, of course. It didn't help that I had told them E was on his way and I was thinking they were waiting for him to arrive to tell me bad news. Eventually the Dr called me in and told me she saw nothing at all. What a huge, enormous relief. I cried.

I called Dr M and he said to come on over to his office right then, even though he wasn't seeing patients on Friday afternoon (he knew from Dr O that I was very anxious) and I am so grateful he did see us, because if I'd had to wait I'd have had a really lousy weekend.

Dr M said right away "we are not in a fight for your life, we are going to see if we can let you keep your uterus long enough to get to have a baby". He probably said this to us 3 times. Of course, getting to have a baby doesn't mean ME having a baby necessarily - we might very well need or be advised to use a surrogate carrier (which is illegal in France but can be arranged in the US).

He talked to us about the stage of disease (stage 0 or 1A according to him, based on the negative MRI). Told us the next step was a D&C via hysteroscopy and a laparoscopy of the pelvis at the same time. He will clamp the fallopian tubes before the D&C to avoid spreading any cancerous cells that are in the uterus. I'll be in the hospital for about 2 days, then off work for a few more days. Surgery is scheduled for the 16th of June. I can check in that morning.