Wednesday, April 13, 2016

One last post

March 29th marked the one year anniversary of David being hospitalized.

Everything was going great after his transplant in September. The first 100 days are the most dangerous, but everything went smoothly. Once you get past the first 100 days it is pretty smooth sailing after that and December 12th we planned to celebrate.

Unfortunately just a few days before our planned celebration David developed GVH.

(Graft-versus-host disease (GvHD) is a rare medical complicationfollowing the receipt of transplanted tissue from a genetically different person. GvHD is commonly associated with stem cell or bone marrow transplant but the term also applies to other forms of tissue graft. Immune cells (white blood cells) in the donated tissue (the graft) recognize the recipient (the host) as "foreign." The transplanted immune cells then attack the host's body cells. GvHD can also occur after a blood transfusion if the blood products used have not been irradiated or treated with an approved pathogen reduction system.)

So we are not out of the woods yet. But we are plugging along and trying to handle the setback and disappoint as well as possible. It isn't immediately life threatening, but still having to go to Necker hospital a year later when they were so positive and assured us repeatedly that they could cure him is a hard pill to swallow.

Either way, I stopped writing and don't plan on writing in the near future so this will be my last post and I will be making my blog private until if or when I feel like writing again.

Thanks for reading, thanks for your kind words and don't fret my pets. There are new blogs about living in Paris popping up every month.



Saturday, October 24, 2015

An Update from David himself

So, this is much easier.... David wrote an update to his friends so I don't have too :)

Hello everyone,

This was long due, but the last few weeks have been harsh on me … I caught a sinus infection that is usually gone within a week … but my immune system having been erased (I’m weaker than a baby, who gets his from his mum), fighting against it is taking a toll on me, esp. as it accumulates with the chemo side effects. I feel like I’m a chemical factory with all the drugs I have to ingest haha. I’m just then taking it slowly, getting transfused with immunoglobulin every 3 weeks to help me fight against viruses.

Summary of the last few months: I went through 4 chemos (3 for "cleaning" the leukemia cells, 1 for the transplant). All has been going pretty well: No leukemia cells detected since the first chemo and I was lucky my youngest brother was fully compatible with me for the bone marrow transplant that was planned early September (statistically each of my brothers only had 25% chance).

The preparation chemo (the toughest, erasing my bone marrow and immune system) and the transplant went perfectly. My brother’s stem cells were so active that my aplasia (loss of all cells) only lasted 2 weeks instead of the typical 4 weeks. Doctors told me I almost had a grand slam if I didn’t have a small raise in temperature one evening. A few mouth sores were bugging me while I was at the hospital, but it only lasted a weekend.

I thus have been able to go back home after only 3 weeks (typically is 4 to 6) which was also a relief, since staying in a sterile room isn’t the best environment.

Now I’m in the acute GvH “danger zone”, which is about 100 days after the transplant, i.e. mid-december (beyond can be chronic but less dangerous). So far so good, got nothing. I’m mostly bothered by the (very strong) chemo side effects: lack of hunger, nausea, fatigue. I’ve lost more than 35lbs/17Kgs since March .. but can’t tell it’s all bad ;) since I was on the overweight side. Doctors prescribed me with food complements since I’m still losing about 1Kg per week. I guess I’m good for a full closet refresh when I’ll be back in office ;)

My diet is pretty constrained as well until the 100 days: no cheese, fresh bread, etc that could be "tainted" ... i.e. mostly frozen/prepared meals. Nothing raw or rare (meat, sushi, seafood, etc) for a year :(

I’m taking a lot of drugs, esp. anti-reject pills for the transplant, until the 100 days term. Then they’ll reduce the dosage until 6 months, which is about when I shall be able to go “officially” back to work (probably April). By then my immune system should be back to “normal”, even though I’ll be sensitive to any cold/etc: like a child/baby, I will catch again all colds, etc until my immune system rebuilds up against them. I’ll also be re-vaccinated for everything (measles, polio, whooping cough, tetanus, etc) after the 100 days (since all has been erased as well) .. so I just have to be careful until then. I’m going once a week to the hospital for a full checkup until the 100 days then it will be once a month until 6 months and then once a year for life.

I now have a new blood type card … a special receiver one with both my original and my brother’s details (as we're not twins, there are some differences), since I’m producing his blood, mine being history now .. but limits the types of cells I can receive (blood, platelets)

If all goes as expected, i.e. no relapse within 2 years of the original diagnostic (last March), they will consider me cured (after that period, statistics for relapses are very low) :)
For now, I’m still considered “RC1” i.e. complete remission at 1st chemo, as they haven’t detected any cancerous cells since then. My next biopsy is due after the 100 days ... my weekly blood results are good so far.

I’m glad Emily and I have been able to take a 2 weeks break in Corsica last August, since my travels are going to be restricted for a while (not sure when my next travel overseas will be allowed). I had regained some weight (loaded with ice cream, Corsican cheese and meat ;) ) and strength before the transplant and that was a good thing.

Wednesday, October 21, 2015

A Quick Update

David's youngest brother was a match and he had his bone marrow transplant on September 3rd. He is home now and doing well but is still very restricted as to what he can eat and where he can go (no where crowded like a movie theater, and never outside without a mask).

He can't touch Maza which she strangely and quickly adapted to. She also wasn't allowed to sleep with us but luckily David coming home meant that it was also her favorite day of the year.... the day the Heat Fairy comes and tunrs the heat on so she can sleep on a pillow in front of the radiator for 6 months. Plus as soon as his paranoid mom left we let her back in. The most dangerous bacteria for David is the stuff on his own body, so the sterilized food, not doing dishes or any kind of cleaning ect. is just a secondary precaution.

It's been a tough long haul since this all started in March and between this and a demanding job, I just don't have the energy to sit down and type out the same story I have repeated so many times to say many people. It's just so boring. No one ever says that about cancer. It's so fucking boring!

So, it's been tough but there is a silver lining. I just don't know for sure what it is yet.



Saturday, July 25, 2015

It's Pyjama Day

So normally I would be wearing David's XXL flannels and socks up to my knees and a sweatshirt and slippers, but for two months out of the year it is actually warm enough to wear this sexy little number.

Pyjama day is when I stay inside, and watch Real Housewives of whatever and lay about the house and don't bother with make up or real clothes. It is great especially when you have gained so much weight that you have gone up an entire size.

So back to the topic at hand. Super exciting and not boring at all to talk about. CANCER.

My Mom is not responding to transfusions anymore, which happens eventually with her type of Leukaemia.  So it's getting time to day good bye to her.

But how do you say goodbye to your mom? My dad disappeared one night while I was at a junior high dance. When I woke up and my mom told me he had a heart attack and I imagined a hospital room, one last hug, a chance to tell him that he was my dad and I loved him no matter what. His co-workers showed up in the middle of the night to break the news.

There was no goodbye.

So, how do you say good bye to your Mom? I really fucking want to know. I would rather slam a hammer to my teeth and pull out my eyelashes with pliers.

My step-dad is just as angry and sad as I am, and through it all he has become like a real dad to me. A feeling of safety I lost when I was 13 and never thought I would feel again.

Here is a story my boss told me. He is a doctor but above all he is funny and super smart and only hires crazy super cool women who give me hugs when I get bad news. (normally no hugs in France).

David's blood is like Afghanistan, and one women decides that she is going to make one million babies instead of the normal two.

They are going to kill everyone in Afghanistan to make sure this one women is dead and all her millions of babies. Then they will re-populate  the entire country with David's brothers bone marrow i.e immigrants.

If it works he is cured for life. If it does not work he dies,