The A-B-Cs of This Ride

My anti anxiety medication

A- There is always so much anxiety that you manage.  I am an anxious person to begin with and in this case I worry about everything.  Every scan that has to come back.  Every time I call or text P-M and he doesn't pickup or text. Every doctors appointment, every email I need to send to a doctor, every time a new symptom rears its ugly head...

P-M's chemo is all done through IV

B- The doctors have confirmed that P-M will need a bone marrow transplant.  They expect it to happen soon after we can get him into remission.

C- Chemo is awesome cause it kills the cancer.  Chemo sucks cause it kills the appetite.

D- Originally the doctors mentioned that Our Man would be receiving an autologous (removal of his own bone marrow) but we found out that in fact he will need to have an allogenic one which is extracting marrow from a donor. 

The Sibley ER room

E- On Thursday we went back to the Emergency Room.  P-M was running a fever and after speaking with Dr. El Shami, he said we should head in.  And so we did.  They ran tests and think it was a low grade infection and did ultimately send us home. With some antibiotics. 

F- Pierre-Marie thinks I am trying to force feed him.  And he hates to be forced to do anything.  But he is losing weight and fattening him up is my top priority.  So I am force feeding away.

G- Pierre- Marie can be quite grumpy these days!  He's tired and I think over this whole cancer thing. Not that he was ever for it....but....

H- We return to the hospital this Thursday for round 2 of the new chemo regiment.  We will be in there for another 5 days of the second regiment.  We were told to expect the brain toxicity again but at least this time when the loony talk starts we'll know what to expect. 

I- Over the course of the last few weeks, we get letters from our insurance carrier.  At one point they wrote to us to inform us that they had denied a claim for some ridiculous amount of money.  Three months ago, I would have passed out reading something like that.  But it's all relative, and now, I read it, I laugh and file it away.  I'll deal with it in the coming months.

John's Hopkin in Baltimore

J- We went to John's Hopkins on Tuesday to meet with a hematological oncologist.  This is where the afore mentioned bone marrow transplant will take place.   That place was like a small city.  Mazes  of offices and armies of nurses, doctors and technicians.  

K- What does cancer kill?  It kills planning, vacations, cooking together, appetites, dignity, normal life, safety, visiting, going out, sharing chores, schedules, energy, control and at times your spirit.  But you know what I refuse to let it kill.....My marriage and/or My husband!  So take that cancer!

L- P-M is currently on short term disability leave.  We are working on getting him onto to long term disability while he kicks this thing.  There's a lot of paper work involved by a lot of people, but doing so allows him to still get a portion of his salary. 

M- How are we managing you may wonder...Some days it feels really normal.  And others, we're struck by the suddenness of it all and the severity of what we are dealing with.  But then we get some good news, and it carries us for days.  Or he smiles at me in a way that he has a million times over and I am reminded that this is a journey and we are great travel partners.  

N- No one and nothing can ever prepare you for this.  

O- In getting a second opinion, we came to realize that this is an aggressive cancer and relatively rare.  So far, there was agreement on the manner of treatment with a few additions and suggestions that the doctors at Hopkins will make to the doctors at Sibley. 

P- The current plan of action is that P-M will have two o three more cycles of chemo, be scanned after each one and when the cancer is in remission then the process for the bone marrow transplants will happen.  

Silence

Q- One of the things, that has struck me about this whole ordeal is the nature of silence.  The Quiet.  When he and I are alone, often we are quiet together.  He hasn't been up to reading and isn't interested in watching much tv and so often I knit and he sits and we exist in the quiet.  I am trying to get used to it.  Sometimes, I am successful, and others, I worry that the noises in our own heads are preventing us from making noise together.  

R- Everything that we are doing right now is to get P-M into remission.  Only then will we me able to start the bone marrow transplant option.  

S- After this round of chemo, P-M will have another round of scans.  He has had multiple CT Scans, but this time, they will be adding a PET Scan to see how the chemo is working on the cancer cells. 

T- I just realized in writing this post that tear (to rip apart) and tear (the water stuff in your eyes) are spelled the same.  Often things that rips us apart makes us want to cry.  And I am no exception.  

U- Sometimes the universe hands you lemons and you know what I want to do with them.   Throw them at the Universe's head and scream profanities at it!  Screw the lemonade!

V- We had to cancel our vacation this year.  We were supposed to go to France to see, and for me to meet for the first time, P-M's family.  And then off to Italy for a week of play on the Italian coast.   But, well....you know, other plans.  Next year however....vacation on!!!

W- I continue to work through this.  Work as in my actual job and not just processing these crazy events.  Often it is stolen moments in the hospital or when P-M is home I head into school.  At times, it feels overwhelming to live in both worlds and at others, it's one of the things that helps keep my sanity.  I suppose it's because I just feel as if I have more control.

Dinner with my sister and the family

X- My achievement of the month.  I can look at P-M's chest X-ray and see whether there is fluid in the image or not.  I could totally be a doctor if it weren't for the years of school, my dislike of blood, my own hypochondria, and the fact that I don't actually ever want to have that type of responsibility.  

Y- YOU....to all of you....Thank you....thank you....thank you....for being there, for showing up, for opening your homes and hearts (for us) and wine bottles (for me).....For your emails and calls and texts, for reading this blog.  For showing us that you are there.....thank YOU!

Z- Day Zero is the day of the actual transplant.  And then each day is Zero plus....We need to hit Zero plus 60 to get out of there.  Currently we are Zero minus 45.