Signs, Signs, Signs, Everywhere Signs.....

I am a superstitious person.  I also believe in signs.  I'm not an overly religious person but I like to think that I have some spirituality in my life.  In recent days, I have been overly obsessed with signs and following superstitions.  No cutting scissors where the blades meet, no stepping on cracks, no walking under ladders or putting hats on beds.  I figure there's no need to tempt the fates.

These days I look for signs everywhere that somehow provide a window into the future.  I hear a song that reminds me of PM and I think...that's a sign that he is going to be ok.  I forgot to put flowers in water and they wilted and I thought....that's a sign of foreboding.  Maybe it's just a song and just being forgetful but I am adding meaning to every little thing.  It is really quite confusing.  

The first sign I hooked onto was about the news concerning Hurricane Florence.  While DC is not in its line of sight, it is expected to brings downpours and winds.   The last hurricane I remember well was Hurricane Sandy.  We got a day off from school. Hurricane Sandy hit a week after my birthday and the first time Pierre-Marie kissed me.  The night of the storm, Pierre-Marie told me that I should spend the evening with him.  I said no way.  He insisted.  I'm no fool.  I said no way.   So you know what he did.  He walked out of his place, he got a car to go and he came from DC to my place.  I told him not to but you know how stubborn he is.  He showed up and wouldn't you know it, the lights went out at that exact moment. So he's standing there drenched in my candle lit apartment.  And you know what happened.  I gave him a bowl of spaghetti that I had made and then sent the poor guy home.  

In the years that followed, Hurricane Sandy marked the official beginning of our relationship.  If a man is willing to drive through a natural disaster for you then you keep him around.  So I keep thinking that Hurricane Florence will be the next new beginning.  For instance, on Thursday, the day of landfall, we are starting Pembro, an antibody that will engage P-M's immune system so that his own good cells fight the cancer cells.  This is a new beginning.  Once we knew that the chemo wasn't working, Dr. El-Shami told us that we should look into immunotherapy.   But Merck was giving us a hard time since it was experimental.  By the time the drug was released, Dr. El Shami was concerned that the cancer was moving faster than the treatment.  And so he started P-M on Cam Path.   This gave him an allergic reaction that landed him in the ER and then the ICU.  And So here we are back at the immunotherapy door.   A new start.

We have had many before but never one when a hurricane was about to hit.

And here's another sign....Many of you know that P-M is a complicated person😏.  We have so far tried 3 chemo regimens that should have worked, and then we tried an antibody that should have worked but they all failed.  On Thursday, we are starting a regimen that has a low likelihood of working.  It is based on a study out of Singapore that had a 100% success rate.  There were only 7 participants but hey....all 7 survived.  So it seems to me that if everything that was supposed to work didn't then why wouldn't the thing that is less likely to work be the exact thing that does work. Wouldn't it be just like our P-m to wait until the very end for his cancer cells to do what they are told to do.....die!

And another sign!  Yesterday, when we came into the infusion center, Pierre-Marie got a bunch of pre-meds to counter any allergic reactions.  We had a friend visiting and while P-M and our friend visited, I noticed that he was getting colder, a sign of a negative reaction.  I got Jessica, our nurse, and  she rushed in.  HIs BP and heart rate were high, his oxygen low.  They escorted Sarah and me to the family waiting room and a chaplain came to sit with us, while a rapid response team came running to P-M's room.  After a few harrowing minutes, we were told that they were taking him to the ER and we followed.   And waited and cried and skulked and once he was stabilized he was sent to the ICU.  He spent the night there and have just been moved to room 524.  You know what's special about 524?  We have had about 5 hospital stays and every time we have we have been in rooms 516, 517, 518, 519.  We have NEVER been in 524.  It's a bigger room with a crappy view.  But I'll take a crappy view with new mojo over a great view with a bad mojo.

And here's another sign.  We have been married for 5 years. The oncology unit is on the 5th floor.    The traditional gift for 5 years in wood.  And you knock on wood for good luck.  He was diagnosed in the 5th month of the year and we will know more about the treatment in October....the And guess what....This new treatment is the fifth attempt at conquering the cancer.  The number 5 symbolizes man, health, love.   My man needs his health back because we love him.    

There are many other signs and superstitions I encounter and I wonder if it is telling me something....Maybe it is....maybe it isn't.  But here's a sign I want to give to the cancer....🖕!!!

These are the signs that I posted for P-M.  It's all the people that hold P-M (and me)through this.

Three Dreaded Words

Cancer is back- #thisisnotfakenews, #Iwishitwere, #canscersucks

The three most awful words in my life right now and you know why?

After Fainting, Before Hospitalization, A make shift bed!

1. The sense of disappointment is crushing.
2. We are running out options.  
3. Abandoning chemo means that we have exhausted all normal protocols.

Yes, for a few short weeks we had a glorious time thinking that remission was on and all was moving in the right direction.  But then tree things happened:

1. P-M got a fever.
2. When I brought him into the hospital, he fainted.
3. While in the hospital his stomach started to hurt and a scan showed that the cancer had returned to his abdomen.

My reaction to this was three fold:

1. Anger  (You can't have my husband)
2. Sadness (I want my husband back)
3. Fear (Please don't take my husband)

P-M's reaction to this happened to be (quite French):

1. Disappointment (merde)
2. Delirium (les ouefs est dans ma classe- post ICU visit)
3. Stoicism (qu'est que sais la vie? La vie est le peste!)

Three things you should know about P-M's cancer:

1. It is rare, so there is not a lot of information on how to fight it.
2. It is chemo resistant which means that the three different regimens of chemo have not worked.
3. It is incredibly aggressive and  while we have seen the horizons and islands of remission, it has not been durable. 

So we are back in the hospital and three things have happened:

1. P-M has C- Diff, a n infection of the colon.
2. He has developed a cough.  A cough that was so irritating the doctors tried to medicate him to get it to stop.  He had a bad reaction that left him unresponsive.
3. We had A CODE BLUE to revive him and a night in the ICU.

This is what you wear when
your husband has C Diff

As I sit here and write, three plans are in place:

1. The pulmonologist is monitoring his breathing and the coughing and is waiting for cultures to come back from a liquid draw from his lungs.
2. Our oncologist is prepping to begin the immunotherapy infusion on Friday
3. Our hospitalist is keeping an eye on his grogginess and odd banter....I mean odder than usual.

I've learned three things from these few days:

Back from ICU

1. Standing in the hallway, as you watch doctors run to your husbands room with a "Code Blue" warning echoing on the loud speaker is an out of body experience that I hope no one I know ever has to experience.
2. It is difficult to be positive when the outcome is so very unknown.
3. Even when you think there are no more tears, some find their way out.  

I know that you want me to write three things:

1. Everything is going to be ok.
2. We are going to kick this thing.
3. This is just a blip

And to that I say:

1. I hope so
2. I believe so
3. I know so

Three is magical number in many cultures and religions:

1. Three is the number of time:  Past, Present, Future
2. Three is the first number that creates a geometric figure.
3. Three is number of Good Fortune.....

And we really need some good fortune to shine on us!

Breaking News: Missing Blog Writer Found Watching TV!!!

Welcome Back Friends....To the Blog, from your vacations,  from what I hope has been a relaxing summer.

Handsome Frenchman Breaks Journey on Remission Island

Yes, friends and family, Pierre-Marie is in remission!  Dr. El- Shami told us in the absolute most anticlimactic manner.  So much so, that I had to ask him over and over and then he started looking at me like I was the crazy one.  But, yes, he is in remission.  The reason to be excited is not really the obvious one.  The excitement stems from the fact that remission means we can begin the bone marrow transplant and that is the key to cure.  And cure is the destination we are aiming for.  Compass straight on point.

Life Continues Even During Times of Uncertainty

Of course it does....We knew that.

In the last couple of weeks:

We celebrated my dad's birthday on July 18 though we needed to abort at the last minute.  P-M was running a fever and we needed to get him checked out.....We did eat cake before going though.

I have returned to work full time and balancing it all has proven to be difficult.  I have work, but I want to be there for P-M.  This is one time where independent wealth would be a great addition to my life.

Sarah came for a visit  when she got back from the trip she and James took to Europe.  We had a chance to catch up and watch movies and hang out.

We celebrated our 5 year anniversary.  And I think I like him even more than the day I married him. He, well, he really lucked out, right?

 Mika got a haircut.  It's too short in my opinion, but as they say it's only hair.  He isn't sure how to feel about it.

The quiet DC July of people traveling is giving way to a busy August of returns and visits and get togethers.

We continue to try and plan for the Bone Marrow Transplant without actually knowing any of the actual plans.

Our niece turned  8!

And life continues on........

Bone Marrow Donor Found In Unlikeliest of Places

Well that's sort of Fake News!!!

It was pretty likely that one of the kids would be the donor.  We don't actually hear anything about the process.  Sarah and Simon were typed.  And then Simon was called and told that he would be the donor.  Simon and P-M will both ave some pre testing and on Day 0, the doctors will extract from Simon and transplant to Pierre- Marie.  Sarah and I will be on hand to make sure that both the Lasseron men are taken care of.

Pot To The Rescue

Pierre- Marie's weight has fluctuated a lot since May.  He's lost about fifty pounds.  The last time we went to see Dr. El- Shami, he told P-M that he needed to boost up on his weight.  He said that he didn't want P-M to be nutritionally deficient when the time came for the BMT.   But P-M being P-M, was adamant that he didn't want to eat.  Picture this:

Hospital Room

Dr. El- Shami:  Mr. Lasseron, you have to eat more.

P-M:  I'm not hungry....but I can eat if the sun is in the right position and I feel that the distance to the fridge is not too far from where I am sitting.  And I do like cumin a lot and don't mind having that in certain dishes.  I remember that in France, I used to eat a bunch of things that I really really liked.  And then...blah, blah, blah, blah....( if you know him, you know the wandering way in which he can tell a story).  But I'm not hungry.

Dr. El- Shami:  Mr. Lasseron, have you ever smoked Pot?

P-M:  Well, yes I have, but I giggle and then fall asleep.

Dr El-Shami:  Mr. Lasseron, between the giggling and the sleep don't you get hungry.

P-M:  Actually, I do.

Dr. El-Shammi:  Mr. Lasseron, that is called the munchies....You should eat then.


 Enter Friends and Pot Stage Right!!!

Between the Pot and the ice-cream....he gained 11 pounds.

Hope Reigns Supreme at the Lasseron-Bhalla House

On good days, this is truly the case.   On the not so god days, we pretend or watch TV or sleep.  We're making strides in the right direction and for that I am so thankful!!

And that rounds up our updates.  Hope you will join me next time for another update of the P-M and Natasha Saaga/story/situation/serial!!!

Till next time.....

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?

. 

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.

Observations from 5A....

We are back in the hospital.  We are on the 5th floor, A Building.  We missed our nurses.

Well we didn't actually, though they are lovely, P-M's stupid cancer cells are as stubborn as he is and they did not respond to the first round of chemo.  So we have to start a second, more aggressive regimen that will hopefully be more successful at attacking the lymphoma.

In the meantime, we have lots of time to think, chat, sit, sleep, and observe.....observe things like this:

• It is true that there is an alarming number of doctors who are Indians.  It's like my people have joined together to cure my guy.  

• We have two doctors.  Dr. El- Shami and Dr. Lari.  Dr. El-Shami is our oncologist.  He's awesome.   He calls me Natasha and Pierre-Marie, Mr. Lasseron.  I don't know why, but he does.  I make him hug me and he does.  Dr. Lari is Pakistani. But I don't think he's ever been there.  He has a girlfriend, really curly hair, rides a motorcycle and reminds me of a very special man who lives in the Nilgris.  I have decided to knit everyone scarves and hats.  And I told Dr. El-Shami that I am adopting him into our family.  He didn't seem to balk at that. 

• Time in hospitals is a weird thing.  I usually get here for rounds in the morning at about 8:30 and leave once P-M is settled for the night.  Those days feel like they fly by.  And yet, they are the longest days of my life.  I have no idea what day of the week it is and no sense of what I do all day, but I am busy and everyday feels like a Monday.

• There are other families on the floor that you begin to recognize. You eye each other as fellow comrades in arms but don't get too close.  A woman in room 504 is named Mumtaz.  I see her family in the family waiting room.  They remind me of my family.  Indian and loud.

• I will never eat at Au Bon Pain again.  Ever.  In a million years.  It is the only shop here.  We eat there often.  Clam chowder, chicken noodle, avocado BlT, the good egg.....never again.  I mean never again after we kick this cancer. 

• My heart has never hurt as much as it did watching P-M in pain.  Breathing through his mouth and hoping it will pass.  Twisting and turning on his bed looking for a position that he feels comfortable in.  Hands gripped on the side of his bed.  The cancer is breaking his body.  His pain is breaking m heart.  

• Dilaudid is great.  Medicine is great.  Chemo can be magical when it works and a fickle friend when it doesn't.

• P-M had his first big breakdown. He had a spinal tap that was very painful.  When he came back I could see that he was tender and fragile.  He cried, I cried, I held him and whispered that we were going to be ok.  That he was going to be ok.  ...we were our own Hallmark movie.  Maya, who happened to be visiting, was trapped in the corner....Poor girl.  

Chemo 2.0

• I have never had more appreciation or admiration for nurses.  They do some terribly icky things with much grace, care and empathy.  We have had a few interesting run ins with some of our care takers.  The "Over Sharer" who lets us know about her dates.  The "Demander" who insists on having everything done their way without discussion or explanation.  But more than anything we have had the "Empathizer" who makes sure that P-M and I are ok.  The "Reassurer" who makes sure that we have all we need.  The Nurses of 5A are amazing and keep us grounded and taken care of. 

• I think the robes are really ugly.  Someone should make softer and more attractive ones.  I think I would make them in a variety of warm neutrals.  There are socks too.  That have treads on them. They come in yellow, green and blue.  The are the better f the two, and yet, they lack imagination.

You know that song "What a Difference a Day Makes".  Well with cancer it is so true.

• Tuesday - We came in to start Chemo.  Dr. El-Shami did not like the fact that his stomach was distended and he was short of breath.  

• Wednesday-  He had a spinal tap and one lung drained.  His pain was severe and the emotional weight of it all was heavy.  He cried and I cried. 

• Thursday- More pain killers, more draining, more pain.

• Friday- More pain killers, chest tubes inserted on either side, more pain.

• Saturday- We went for a walk.  He ate a yogurt.  And drank an apple juice.  A small victory...a huge step....