Round

I’m doing okay these days.

It’s not always easy, it’s not linear, it’s not perfect, but it’s okay.

I’ve lost another pound this week, again pretty effortlessly.  I am still so amazed that I am not hungry while I eat this carb-restricted way.  That I can put lots of oil on my salad. Eat meat with sauce.  Have a cheese and olive snack.  Eat a dessert that has become my evening staple and makes me not miss sweets at all.  (Marscapone cheese mixed with a teaspoon of cocoa powder - so rich and chocolately flavored that I dont even miss the sugar).

The cancer is slowly shifting to be just a part of my life, not the monopolizing presence in my life.  I’ve attacked art projects and decluttering and other piled-up projects I’ve been meaning to get to ’someday’.

Some of the discussions with my husband have been tough.  We don’t have the same perspective on the different paths to have a baby - I am totally okay with gestational carriers, he is not very at ease with this.  And at the same time, I’m very aware that I’ve not been successfully pregnant, and that to try a pregnancy at my age and with my history is a riskier undertaking than to use a young and proven gestational carrier (all these surrogate carriers have already had succesful pregnancies).  Plus there is the cancer angle, and I’m afraid of a cancer coming back while pregnant, having to make horrible choices between tumor and baby, the anxiety of 9 months of fear when it should be 9 months of healthy anticipation, etc etc.  These items we agree on, it’s just the ‘is hiring a surrogate carrier ethical’ issue which we don’t agree on, and while I think we’ll eventually find a way forward that we are both comfortable with, knowing we are not on the same page on this has been hard on me, hard on us, this past week.

I should have the final pathology report this week, and then the treatment plan starts in the coming days.

I’ve done some cooking this weekend, always very therapeutic to me, and have really, really enjoyed being home for several weeks now.  I imagine that next week and the following one I’ll be back on the road a bit, then we’ll be off for vacation, but at least I feel settled again.

I have to assume the way I’ve experienced the diagnosis of cancer this past month is pretty usual, maybe even better than many people, and I have to say it’s a sobering thought.

Initially I was in such a fog of fear that I couldn’t process anything.  If I was taking action I was okay, but left alone with my thoughts for 10 minutes it was a bad situation.  And I have a particularly good situation relative to the ‘average’ person initially told they might have cancer - I make a good living, have great health insurance, have doctors in the family, work in a healthcare-related field which gives me tons of connections to the best local doctors out there, I have a high level of scientific literacy and I’m reasonably web-savvy.  Despite all of that it was a harrowing experience.  I’m now thinking about starting a website for people with my type of cancer who want to know more about options and risks of temporarily sparing their fertility, since I’ve found solid information on this topic unbelievably difficult to come by, despite all the above advantages that I have.

I’m also finding that I am definitely going to be moving towards “a new normal”.

You read on the cancer information sites that there is life “before” and “after” cancer, which seemed a bit dramatic and over the top when I first came across it, but now, almost  a month after the first news, I am starting to get it.

For one thing, there is a whole lot that is out of your control, so you want to make choices when you can.  I have often gone with my husband’s wishes in choosing a movie, for example (because professionally I make choices all day, I’ve often preferred to let someone else choose in my private life) but now I’m not so sure I’ll just spend my time on any old thing.

I am full of forgiveness and compassion these days.  Not that I was a cold-hearted person a month ago, but I find myself constantly thinking that other people have had a lot of suffering too and need to be treated kindly, and that most people pretty much do the best they can.  I also feel like I have this secret ace up my sleeve - that I can trump anyone having a bad day by saying ‘oh yeah? well, I have cancer and will probably never have a baby, so there!)

I am really feeling the need to set up comforting routines.  Meditation (so far I’m all talk and no action on this, but I have downloaded a ton of podcasts and bought a few books), regular exercise, healthy low-carb eating.  Having a pretty and comforting home. Having nice pampering things around me (creams, essential oils, bathrobe, etc).  Getting rid of clutter.  Tackling some of the huge organisation projects that have been on my ’someday’ list.  Doing everything I can to take really good care of myself basically.  Being kind of zen about my weight too - I want to eat in a way that is healthy and fresh and avoids sugar and its carb cousins, but I know the treatement they will give me next week is an appetite stimulant (given to anorexics, if you can believe the irony!).  I’m likely to go up a bit before I stabilize, and further loss will likely be s-l-o-w.  And that’s okay.

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).

I am one pound down today after not having weighed in last week due to being out of town at a fabulous (NOT DIET) break, and then going in for surgery Monday night (NOT DIET either, but waaaaayyyyyy less fun).

The surgery itself was actually pretty easy to bounce back from.  If you are squirmish skip this paragraph, but for those who want the story, very little vaginal blood - like barely needing a pantiliner quantity, and the most of the ‘incisions’ they make for laparoscopic procedures are really just like deep puncture cuts.  They are seaed with steri-strips and I just drop on some betadine and a new bandage and don’t feel a thing.  The exception is the ‘big’ hole they made in my belly button.  Now, I am someone who holds most of my weight in my belly (this has been true all my life, there are pictures of a 3 year old me with a big budda belly and pretty normal arms and legs and butt).  So getting through this belly button on this big belly was apparently harder than usual for them, but they managed to do it, and despite worries it wouldn’t heal well, the healing is progressing normally.  It’s the incision that hurts the most, and I had a lot of bruising around it at first, but luckily having my mom here now means I get it checked by a doctor daily, so I know it’s on the right track.

I have obviously not been exercising, although I wear myself out doing almost nothing.  Yesterday a 15 minute walk around the neighborhood for the fête de la musique wore me down completely.  I’ve been trying to avoid napping because I’m not sleeping well unless I take Ambien (and I am down to one final little Ambien).  I took one last night and slept well for the first time since Tuesday (the night after surgery when I still had the anesthetics levels high I slept).

I’ve also had very little appetite.  I generally eat because someone else points out the time to me.  Even when I do eat I am tired of it pretty fast.  I have done enough reading on weight and metabolism to know that I don’t want to be eating at this level of calories for long- with the surgery my body is already in fight mode and a severe caloric restriction will only enhance this, so I need to find ways to boost my total calorie intake.

I’m still doing low carb.  I re-started Wednesday and even in the hospital didn’t have too many, since I only ate one meal (breakfast) which was all carbs but still a small yogurt, small applesauce and 4 peices of melba toast doesn’t make an enormous bolus of sugar.  I was on 3 litre drips of glucose fluid, so all in all it was clearly out of low carb but not terrible (I’m positiive I ate considerably more carbs during our nice weekend away).

Today is the big day of finding out where we are.  We see the doctor at 3:40pm.  I am going with my husband, I had to tell my mother she wasn’t coming with me (and she was VERY disappointed).   But ultimately it’s my decision to make, and the person who needs to understand it all and support me and help make any tough decisions is my husband, not my mom.  She asked if they could both go and I said, “probably, but that’s not what I want”.  Am I a cold hearted bitch?  I know she is terribly worried, I know she wants to make sure everything is handled well, I know as a doctor she would ask different questions than me (I’ve asked her to write these down).

But this is hard enough on me, on my husband, on our marriage without having a third party witness.  In the end if we have any choices to make they are up to us. If the cancer is on the scarier side than what we hope, well, we need to deal with that together, and there is little mom can do about it.  If as I pray, the cancer is slow growing, low grade, and very contained and we can consider a treatment path which might give us a chance at a baby, that is a decision that can only be made jointly by me and my husband.  Family, friends, experts, other doctors etc can help us see peices of the puzzle, but the only people who can weigh out the risks and benefits of such as situation is the two of us.  I can’t do it alone, nor can he.  Well meaning friends and family and knowledgable experts can give perspectives and facts, but at the end of the day it comes down to US.

So, you can add a small amount of Mom-Stress on top of the rather overpowering Health-Stress right now.  Luckily work has been great, so no work-stress to speak of, and I think I’ll use some of my waiting time this morning to deal with house-is-a-mess-stress.

Once again, thanks to you, my friends, for your support.

Tonight I am very sad and very scared.

I am sad because I am realizing that in all likelihood I will never have a child, and this has been my dearest dream for many many years.  Wanting children together has been a foundation of my marriage, and I am not so sure that my marriage will survive this huge disappointment.  I love him, he loves me, but we really wanted kids together and I have moments of doubt as to the importance of this common goal in the structure of our relationship.

I’m also very, very scared.  The physical side of the operation on Tuesday has been relatively minor.  The pain is not so severe, the bleeding almost non-existent, the physical healing coming along quickly.  But the terror of what kinds of malignant cells they might be finding and where and how diffuse they might be is a constant worry in my mind, and one that seems to just get bigger and bigger as the hours tick by.

Putting on a strong public face is wearing me down too.  My mom is here, full of worry and concern and a million doctor questions, and trying to reassure her and keep her from having a breakdown may be pushing me close to my own.  My husband is worried as hell and also under tremendous pressure at work - this is always his busiest time of the year, one of his top guys just had a baby and so is tired and not up to par, and one of the other top people is in the hospital bleeding while pregnant and unlikely to come back to work in the coming months - and my husband is the only one who can do what they do in the office, so he’s basically working 3 fulltime jobs plus having to be there for me.  So I feel like a huge drag when I ask for even a little bit, because I know he’s running from one huge pressure into another, morning noon and night, barely sleeping… And the last thing we need is pressure like this on our relationship.

I also feel very alone.  I feel responsible for being in this situation, in part for my weight, in part for every unkind thought or deed I’ve ever done, like there must be some reason I’m not considered good enough by the universe to be a mother, and to need to suffer both infertilty and cancer.

I keep trying to be strong, because I’m very afraid that if I keep falling apart one of the times when I’m in peices I won’t get it back together again.  Part of me thinks the better solution is to keep a stiff upper lip and hold it all in, and part of me just wants to sob and scream.

Monday I see the doctor to get news on the cancer.  It’s going to be a long few days until then.

The hospital visit turned out to be quick - I was out about 36 hours after surgery (which in the US would be a long time for what I had done, but here in France they usually keep you longer).

Surgery went well.  My big belly made the laparascopic pelvic part harder for them, but they did it and I’ve got multiple puncture marks on my abdomen.  The pain control has been good and bleeding has been minimal.

I have to wait until Monday afternoon to know more - to know how the pelvic wash turns out, how any biopsies turn out, and how they will grade and stage the cancer in the endometrium.  It’s going to be a LONG several days.  I’m off work until July 1st (which probably isn’t physically necessary, but probably IS a good thing for my head).

I’ve decided not to weigh in this week.  I’m still following my low-carb diet, still enjoying the fact that I’m almost never hungry, and certainly less worried about ‘when do I eat’ than before.

But Sunday we are going to the fabulous chateau in Champagne for lunch and dinner. It’s our anniversary.  The chef has 3 Michelin stars.  I have cancer.

I think I deserve a week or two off from weighing in.

I will eat what I want on this short trip, and I will do the best I can while in the hospital this week, but hospitals put people on a glucose drip and the food is almost always carb-based, and unless I decide to become a huge pain in the ass about my diet, I think I just need to go with the flow and get back on track as soon as I’m back home. 

I don’t see how being a royal pain at the hospital about what I’m eating will help me - I’ve been in France long enough to know that I’ll just make enemies, and I really don’t want to have to defend my diet to everyone.  I want my fights in the hospital and healthcare system to be about getting my pathology report read faster, pain medication when I need it, and access to the best doctors out there, not about idiotic things like whether the scale will bounce up because I eat carbs for a few days.  Besides, if I ask my husband and my mom to bring me low carb foods from outisde they’ll both be happy to have something concrete to do.

I’ll probably weigh in next week, take the hit of the numbers rising with carbs, and watch in the following week or two as they come back down.  If I don’t let you know what’s happening weight-wise, will someone please nudge me back on track? I’m okay with a slight step off the straight-and-narrow, but I don’t intend to go AWOL no matter how good a sob story I can create about how I deserve it.  You could also scare me with stories of how cancer feeds on sugar (carbs) which generally has been enough to keep me from even a small nibble, but you never know what the return to carbs might do to my brain…

In times of stress, I eat.

I have done this all my life, so why would I think now is any different? It’s definitely a time of stress.

I suppose what is different now is what I’m eating.  I would never have believed it, but this low-carb thing has really changed the way I eat.  I don’t mindlessly graze and after eating I’m not immediately hungry again.  So it’s now been over 8 weeks since I’ve had bread, pasta, potatoes, dessert & the like.

I’m eating plenty of other stuff, and if I was counting calories or grams of cholesterol I’d probably be seeing numbers that scare me, but since I’m trying to be gentle with myself I am just sticking to low carb and following the right kinds of foods without tracking anything.  I know by the kinds of foods I’m eating that the carb grams are low enough - but have tested for ketones a few times just to be sure.

I have gone for walks yesterday and today, both of which help me relax and enjoy my life here in Paris (lovely in Spring), and I’m enjoying being on a diet where I can eat meat, butter eggs and cream (and veggies too, but that’s less indulgent!).

My tests this week all came out well, thank god.  I have a busy weekend ahead of me, then my mom flies in on Monday, and Monday evening is hospital time.  I suspect the waiting for the pathology report will be the worst, of course.

A little extra eating right now seems like not such a big deal, and I’m quite pleased that I’m able to do it within the constraints of my diet without feeling deprived.

I’m also starting to look into meditation as a stress-reliever.  If anyone reading has any experience with this I’d love to hear your thoughts.

Yesterday I went to see a counselor, one who speaks English & isn’t too far away. 

I don’t actually know if I need a counselor, but I don’t want to be completely isolated in dealing with this disease and it’s consequences, and I think it’s important to have someone to listen to me without having to worry about taking care of them emotionally at the same time (unlike discussions with friends, family, my husband). Finding someone who speaks English was a key factor, because while I am completely fluent in French, I don’t express myself the same way, and I’ve already seen that I am less real and raw when I talk in French (I saw a counselor in French last year after the ectopic pregnancy mess).

These past weeks I’ve been back in the gym, something that started actually before the cancer horror, probably because I’ve lost enough weight to be thinking about exercise again. I was freaked out by how out of shape I was, how high my heartrate was on the elliptical machine at low levels. One of the greatest things about starting exercise when we are really out of shape is to see how fast you can see real progress. Yesterday I did a really intense hour on the elliptical and was really please to be up several levels on the machine and with a heart rate that was pushing it but much improved in only a few sessions. I was also able to go a full 60 minutes which would have been near impossible a few weeks ago. It’s also a BIG OUTLET for the stress, no doubt about it.

So yesterday I arrived for my appointment curious as to whether I would think this counselor worth anything. I had gone to the gym in the morning, and gotten off the metro stop so full of energy that I took the stairs instead of the escalator, something I admit to not having done in almost a year.

As I arrived at the counselor’s buidling, she informed me on the intercom that the elevator was broken and that she was on the 10th floor. Great.

Here in France that means 10 full flights of stairs, not even just 9 that you’d have in the US where the ground floor counts as 1 — here ground floor is zero.

As I started up the flights I realized it wasn’t a bad analogy to what I’m going through. Trudging on to the next step on and on.

• It hurts (my thighs, the surgeries & procedures).
• It’s ugly (the stairway & the situation).
• It’s hard.
• It’s not fair.
• It’s a lot of work to get to a step that I don’t know how useful it will be (the first visit to this counselor, and each procedure and doctors visit I am making).
• I have to be strong.
• I have to keep going.
• I have to just accept it and get through it.

I weighed in for the week today because tomorrow I am on the road already.  Down one pound again for the week, bringing me to -15 now. 

Thank you for your comments.  I think I am going to keep this blog going, as the diet and exercise part of our daily lives, and I like it here.  I also have always put more than just a food diary into this blog, because the truth is we are all people with complex lives and plenty of other things going besides our weight.  It might the the common thread we have here on 3FC but our other common thread is that our weight is only a small aspect of ourselves.   

I thought this week things would start to be better, but I’m finding that I am beyond distracted by the cancer.

During the times when I am in a meeting for work I’m okay, but pretty much most of the other times I’m preoccupied, and my work inbox is the biggest mess you can imagine. It’s hard to pretend that the work stuff is even remotely important.

Reducing my stress seems like the most important thing I can do right now, especially as I face another few weeks of waiting until the diagnosis is staged and the treatment plan is finalized.   I’m reducing my travel, will probably head for only 2 days/1 night on the road, and I’m trying to make sure I get some exercise.  It makes me feel like I’m doing something positive for my body, and I do think it’s a good outlet for stress.

I’m also still watching my diet, which seems ridiculously superficial on one hand, and profoundly important on the other.  I know myself, and if I don’t watch my diet in times of stress, I will eat my way into another 2-3 sizes in no time flat.  In addition, I do believe a healthy diet is good for the body, and while I don’t expect a cure for this from my plate, I do think that everything in our bodies is impacted by what we eat, so making healthier choices seems like a smart choice, and one that reduces my stress.

I’m trying to figure out whether to leave this blog for a while and start one somewhere more focused on the cancer, since it’s not the weekly scale fluctuations that will make me cheerful or depressed right now, but I don’t know if I’m emotionally ready to move to a ‘cancer blog’ where it would seem that my whole life would be about this stupid disease.

I guess things can’t be so bad if I’m able to spend time worrying about this, right?

Thanks a ton for the outpouring of support, it really helps.