What I Did on My Summer Vacation.....

Do you remember how in school, every Fall when school started you were asked, "what did you do on your summer vacation?"

 I used to love those questions.  As a kid, most summers were spent traveling thanks to the generosity of the the World Back and it's benefits package of the late Eighties and Nineties.  I would regale teachers with our travels and confound many of my classmates who didn't understand why sleep away camp was not a part of my summer vacation.

The beginnings of carrot soup- he likes mushy things.

I go back to work full time on Monday.  The summer has allowed me the opportunity to work from home or the hospital.  I have been able to spend the days with Pierre-Marie force feeding him and checking his temperature.  Late nights at the ER, middle of the nights request for pain killers and early morning check ins about night sweats have not bothered me since alarm clocks and schedules had a flexibility not usually afforded someone who works in a school.  But Monday changes all of that.  It's not only the idea of losing some flexibility it's the idea of answering the question, "How was your summer?" from the many well meaning people who have traveled around, seen friends and family and had a moment to relax and rejuvenate.

Late nights in the ER

How do I answer that without making them or us uncomfortable and awkward.  See, as you know, our summer has been one of hospital visits, anxious evenings, late night trips to the ER, visits to the pharmacy, force feeds and night sweats.  But no one really wants to hear that.  So I've been working on the spin for it all.  So allow me to try it out on you.....

How was my summer, you ask?  Well it was different from most.

View from 519 

We had the opportunity to see some amazing vistas.and meet new friends and try different foods.  We watched a bunch of movies, and I read a ton of books and made some headway into a few of my knitting projects.  But most of all I got to spend the summer with my best buddy doing things we love to do and appreciating the moments we have together.

The hats I'm making for the nurses

Hopefully this will come off with little sarcasm and we can move on to more exciting topics such as what they did this summer.  And I'll promise to listen and be interested and ask all the right questions.  

More than anything this summer has taught me the value of the questions we ask, how we ask them and when we do.  I suppose I have regrets over the questions I have posed in the past and the manner in which I have asked them, but I think I am more regretful of the questions I didn't ask.

So, let me start....

I got to spend a weekend with my mom, sister and my nieces.  

On your summer vacation, did you do something that brought you joy?  

Every minute with this guy

Did you make a memory you will cherish? 

Take this gentleman home after chemo cycle 3

Did you do something you hoped to do?

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The proverbial feet in sand pic....with a twist!

For all those questions, I would absolutely have an answer that didn't need a rehearsal

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.

Breaking Free!

And we are home!!!   After ten long days in the hospital, Pierre- Marie was allowed to "check out".  It was great to finally have him home.  The constant runs between hospital and home can be quite trying.  On Friday, Simon and I were able to run home with our Pal!

We got some excellent news before we left.  THE CHEMO IS WORKING!!!!  Dr E-S decided to do a CT Scan to check on progress and he said, "this is better than my wildest dreams"!!

WHAT?!?!?!   Yes, that's exactly what he said!!!!   


Since he's been home we have had an incredibly active time of it....   Busily doing a lot of necessary things.  

For instance in the morning, this happened.  

Then this happened.........

Then he wanted one of these cookies......he actually had three

But all this activity was broken up with some not so pleasant things.  P-M received a Neulasta shot that triggers the growth of white blood cells.  He woke up this morning and was in pain.  The white knuckle pain, the moaning out loud pain, the I can't move pain.  By 4 when it had not gotten better, I called the doctor.  He said the best thing that works for this type of pain was Advil.  So instead of the high power meds, good old Advil came in handy.  Ooh that and Claritin. Who knew?

Normal life is coming into focus.  The new normal.  P-M, Simon, Mika and I spent the days hanging around.  I watched the Americans, Simon and P-M went on walks, Mika napped.  But oddly, the most gratifying thing that happened this weekend, was that P-M and I had a little fight.  It felt normal, the old normal.  As with most fights, there were no winners between P-M and I, but together we won over cancer.  It was a good win!

Independence Day 2018

I have been thinking a lot about independence.

Quite honestly, this Independence Day lacks the fireworks that others have had.  Or rather there have been fireworks of a different sort.

When P-M I got married, we talked about many songs that we wanted our first dance to be.  He wanted "Don't Fence Me In".  I told him that wasn't going to happen.  As we were getting closer and closer to our wedding date P-M made sure to remind me that he was not going to give up his independence.  I, on the other hand, had waited my whole life to get married so I was more than happy to give up independence.

And then it struck me!  He and I have different definitions of independence.  His equates to having the choice about his freedom and mine was about having a radius around us that I wanted to say within.

Today, July 4, 2018, independence has a different meaning all together.  But to understand independence, I have had to learn about dependence and interdependence.

I think for many people dependence is a sign of weakness.  You're dependent on something so that must mean that you can't stand on your own two feet.  But I'm learning that dependence comes with allowing yourself to feel the full humility of being alive.  Pierre- Marie and I are dependent on our doctors, our nurses, the medication, on the insurance company being able to communicate with our doctors.  He is dependent on nurses to help him clean up and walk around.  I am dependent on doctors to help me understand what is happening to him, to tell me when the chemo didn't work or why he is so disoriented he thinks the nurses are living in the wall.  It is an incredibly humbling experience to rely on others to tell you if you are ok or not.

I am dependent of family and friends to help me figure out when it's ok to step away and to bring food when I can't.  I depend on visits and phone calls and people reading this post.  I depend on friends to let me come over at 9:00 after leaving the hospital, a little too late for them but not so late that they don't invite me in.  I depend on my sister to push me to take a mini break so I can get the pleasure of falling asleep with my five year old niece, her soft little body curled into me.

These are chemo cards.  I made them for P-M.  He can read them from his
bed which I hope helps to ground him when he starts to fly. 

This is of course different from the interdependence I have been a part of.  Pierre-Marie and I are interdependent on one another.   I rely on him getting better and he relies on me to be here through the ups and downs.  Sarah relies on me to give her updates about what is happening so she doesn't feel too far away and I rely on being able to call and have her come down when I need a break. I rely on Simon to walk Mika and he relies on me to make sure that his dad is taken care of.

And it is through the dependence and interdependence of our lives that we hope to find some independence in the next few months.  He wants to have the choice to be free from hospitals and doctors and hospital beds and needing help to go to the bathroom.  He wants to choose when he sleeps, what he thinks and have the freedom from being poked and prodded.

But in the short term, I think he wants some independence from the brain toxicity that has addled his mind.  One side effect of the ifosfamide is an altered state of consciousness.  This has been P-M's world for two days now.  As he describes it, there is vertical reality and a horizontal one.  He is concerned about who is going to save the human race.  He thinks it could be me or Simon....Great one more thing to add to my list.  SAVE HUMANKIND....but then he told me that it wasn't me because he didn't see the mark on me.  Crisis averted.  And then reassured me that my bloodline was being protected in India.  Well thank god for that!

At times, he comes back to me.  My P-M.  He looks like my husband and calls me "baby" in the way that only he can.  And I welcome him back....and then slowly his eyes change and he begins to wonder why the nurses live on the crack in the wall and I know that I have some time to wait until my husband returns.

These are scary times....in so many ways....

On this Independence Day, I am hoping that the many "bodies" being attacked by the many "cancers" are able to find friends to depend on, compatriots to rely on and independence from that which attacks them.