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,


Tuesday, May 12, 2015

Chez Nous

David has been home for a week now. Originally he was dreaming about steak for his first meal but when he finally got out he wanted me to make him my Mom's specialtly. Mac and cheese.

We went to see Avengers 2 and got Chipotle to go and the next day he made shepherds pie and the day after that he was craving shakshuka so I don't know how but chemo killed the cells that make him French.

We have stayed in our neighborhood mostly, except to go get his hair did and buy two hats.

It's nice to have him home. We are crossing our fingers and our toes that he has the full 15 days off before he starts the second round of chemo, but every extra day is special. And every day that goes by and they don't call is great. As much as we want this all over with, I think after more than a month we really need a break. It's so nice to go home after work instead of heading to the hospital. And it's great to enjoy the sun and the nice spring weather together.


Monday, April 20, 2015


I always imagined that my first experience in a French hospital would be having a baby. So imagine my surprise when it is not me in that hospital bed but my husband.

Shortly after arriving home after three weeks working in Barcelona David was diagnosed with Acute Myeloid Leukemia and began treatment immediately. He has been sequestered in his room since March 29th and all visitors have to wear a robe, a mask and a hair bonnet and are not allowed to touch him and have to stay right next to the door in order to contain contamination.

He has a very similar leukemia as my mom. And while my Mom battles it out doing her second round of chemo my brain battles it out trying to think of her and what she is dealing with when all I do is metro boulet hosptial dodo and my body battles it out needing to be two places at once. And at the same time not wanting to be in either place.

There have been many other great and horrible things going on, but this has brought all that minutiae into the forefront and I can just brush it away and focus on being positive.

My boss is a doctor and he said that normally a doctor only comes across this type of cancer once in his career and he couldn't believe that a person could have both their mother and husband suffering from this kind of cancer at the same time.

This is just too fucked up for me to cry over. Yeah I cried the first week but it is just fucking ridiculous.  Throw in a demanding boss who thinks he is helpful by keeping me 'distracted' aka swamped with work, and a revolving door of French people who only turn off the French radio to turn on the tv for three weeks and my brain has just had it. David doesn't want people to feel sorry for him so he doesn't want anyone to know but I cant keep my mouth shut forever.

We kept it lighthearted at first with jokes about playing nurse and Maza Cat-Chatting with him to say mean things about me.

David is really taking this role playing game too far

David and I are in a competition to see who can lose the most weight. If he wins he gets my most prized possession. My 15 year old fat mean cat and I will let her sleep on his side of the bed. If I win I get the full L.A California plastic surgery. Duck lips, nose job and cannon ball implants.

And jokes about fresh baby blood being delivered from the children's ward upstairs every time he got a transfusion.

David finally got h is own cat

Despite me taking away her wi-fi Maza is still sexting David using CatChat. And she told him she can get duck lips too if he wants. This bitch is going to the taxidermist tomorrow.

But that all stopped when he got really sick. For more than two weeks he has had chills and fever, throwing up, can't sleep and has stopped eating.

Ice bucket to cool his intravenous liquids to help lower his fever

It's rough seeing someone you love suffer. And it's worse when you can't touch them at all, not even to pull the blanket up or give them some water or a hug.

And a few days ago, he was fed up and exhausted and told me to write down his funeral requests. And that's when he said the sweetest saddest thing he has ever said to me. He said he wanted his ashes scattered at Bridgeport in California. It's just a small spot on the river where we spent the summers together swimming and playing Uno. And out of the places we have been together it's still our favorite spot.

Needless to say I am learning all sorts of new French words. Words I never wanted to know.