April 27, 2013

DAY55, I Think

Hello again.  Sorry I haven’t written in a while.  For the last two weeks I’ve been going in for an IV drug at 8 AM and 8 PM every day.  That kinda kills the day.  I am getting better every day but still can’t seem to gain weight.  I’ve gotten to 3000 calories at least one day but other days are not so good on the eating scale.  Doing about the same on the exercise scale; laps around the condo and house chores.  I still haven’t made it through a day without at least one nap.  I can feel it getting better but it is SO SLOW!!

Thursday night I did have a situation.  About 11:30 I woke up on the couch and went to pee.  The resulting liquid obviously had blood in it.  Bright red and not much but blood none the less.  “What do I do now?  It’s almost midnight.  I’ll be back at the clinic in seven hours. Yeah, let’s just wait.  Yeah but ………what if?....I could call a nurse but she’d have to say go to the ER.” This went on for a while.

So about 1:00 AM we arrived at the ER.  Tests were run, doctors were consulted and I was released.  We got back home about 2:30 so pretty quick for a night visit to the ER.  The next day Dr. B told me to call the clinic number next time and I’d get referred and maybe save the ER visit.  That’s good to know.  He also released me from the two-a-days so that made for a good day, even with the 90 minute IV he through in at the end.

 

Boone

Day 52 and counting....

Pauline here again.

Boone just weighed in at 122.  I swear I don't know how he's loosing weight so fast.  It must be all the cream and butter.  My doc laughed and said that was the Atkins diet, except for all the sugar.  I had lost 7 pounds.  I guess stress burns calories.

So does trying to heal.

We are back at the clinic this Monday morning, and again Nurse Steven is like a busy bee. Working his tail off.   He's just taken a blood draw to see what the verdict is for today's meds, and please oh please can we stop the two a days!

One of the things we really have to watch for is any sort of rash.  Last night in the Infusion Room, the nurse noticed Boone's eyelid was red.  Had me take a picture to record it so the docs would be able to compare.
------
The curtain fell and time passed.  Now Wednesday AM.  (Day 54)

No luck on stopping the two a day drips.  Just learned this morning that they want to see three consecutive negative tests results before stopping the antiviral drip.

Boone is doing well except the weight, and maybe we are seeing a slight bit of progress.  Tuesday he weighed in at 121; today 121.5.  We will take it.

Boone is having difficulty with the eating.  He is so weak he doesn't want to eat, but knows he has to eat.  The other night we had a come- to- Jesus meeting about he has a choice; eat or die. Period.  It's that simple.  Still it doesn't help him with the stress and anxiety of this ordeal.  I'm stressed to my limit and completly worn out, I cannot imagine how tired he is.

For those of you into the numbers, his white count last I saw was 3.8; almost in normal range.  His hemoglobin, hemoticrit, and neutrophil numbers are either low normal or just below normal.  It's only the platelets now that are being stubborn.  He's at about 25% of where he should be there, but its not particularly dangerous.  I continue to be amazed that we have seen no GVHD, or any infections.  So far, other than the three trips to the ER and one cardiac arrest, everything has gone very well.  These doctors are definitely strutting their stuff over how well he has done.  You can tell they are very pleased.

As for curing the psoriasis the hard way...I guess it is working.  The chemo works on rapidly dividing cells, which includes the skin.   Boone is now shedding large pieces of skin, more lizard like than the old small particle almost sandy looking dead skin.  In places it is falling off so fast that the new layers are tender to touch, but it appears to be nice soft normal skin underneath.  Even the blotchiness is going away.

Our issue now is he's cold and I'm constantly wanting to open the windows.  For me a top down drive in the roadster is heaven, for him impossible.  No doubt come next winter he will be having hot flashes while I freeze.

Day I don't know what, and counting

Pauline here.

These two a day trips wear on you, but after you see other people in the Infusion room that are there for 10 hours straight, you begin to feel lucky that "our" sessions only last about 2 hours each.

Boone is steadily dropping weight.  He tries, I swear, I know he's trying, but he doesn't eat enough to maintain his weight, much less gain weight.  I made him peanut butter cookies; as cookies go, not particularly sweet, so he likes them, especially the ones with pecans.  They are pretty good, I added extra sugar, an extra egg, and half a again as much butter as the recipe calls for.

Last night I made homemade chicken pot pie, with whole cream, and about a quarter pound of butter thrown in.  He ate a small serving.  Today he's down a pound from yesterday.

Today I get my turn to weigh in at my doctor...can't wait.  I'm sure I've gained about 10 pounds.

Boone is walking laps around the living room furniture, but not really able to increase the duration.  I'm so exhausted, I cannot imagine how tired he must be.  Or how tired he is of my constant nagging on him to eat.  Perhaps this is the lesson; eat, drink, and be fat....cause if you have to go through chemo your gonna need that weight.  Wasting Prevention.  Yeah that sounds good, i will see what my doc thinks about my theory.  I'm sure he will be thrilled.

Still I must say that the nurses here are the best.  At the clinic we are getting to know Steven.  He is possibly the hardest working nurse I've ever seen.  He's fast, and thorough, and he knows his stuff.  Pleasant to be around, but there is no time killing going on.  Whatever they pay him, it's not enough.

We will see the doctor team today.  It's like a pack of coyotes all running together.  They meet outside your room, discuss your case, then all come into the exam room...there's barely enough room for them all, then the whirlwind of questions, pokes, and prods and they are off to see the next patient.  We could all take efficiency lessons from these people, but then I guess they get to sleep at night.

Not much else to report until after the doctor flurry.

April 17, 2013

DAY 49 - OH BOTHER

Got a call yesterday afternoon.  Had to go in at 8PM for a new IV.  Turns out they found some evidence of a common lung infection.   Common among folks, especially farmers but not good for BMT patients.  I do not have the infection just some marker.   Have to get an IV every 12 hours for a week or so.   Off to the hospital in a few.

Boone

April 14, 2013

DAY 46 – HOSPITAL TIME.  WHAT I KNOW OF IT.

 

Been a bit slow here but I am determined to get decent length post done today.

I was in the hospital 43 days and I doubt I fully remember three of those days. As you may recall the first few days were easy but throw in the drugs and a couple of allergic reactions and you have my little journey. The TV sucked and the window was boring so I started keeping my eyes closed all the time  I’d watch the little movies that played in my head.  More than once I was surprised to view a different scene when I opened my eyes.

Things were pretty dicey for a awhile. I believe Pauline wrote a bit about my trips to the ICU.  I wanted to tell you a part of one of ICU trips that I will not forget.

I had a couple of panic type attacks over being able to catch my breath.  I don’t know where one occurred; Probably in the ICU.  I just know that I couldn’t get a breath in and paniced.  The nurse looked at the monitor and told me I was fine.  “Just breath in through your nose and out through you mouth.  You’ll be fine.”  That is not work for me.  I got more agitated and It to forever to settle my breathing down.  Heck they may have sedated me.  I don’t know.

The other attack I know was in the ICU, complete with arm and leg restraints. My hands were in “boxing gloves” and strapped to the bed.  I could not get a breath in, or so it seemed to me.  I thinks its related to the CPR because that spot is the same one where my chest won’t draw air.  Anyway, I began to panic.   I couldn’t breathe..   I did get them to understand.  Nurse A looked at the monitor and pronounced me fine.  “Just breathe in through your nose and out your mouth.  Your fine.”

Then Nurse B took my “hand”  She told me she had panic attacks sometimes so she understood.  She assured me that I was fine and that she would stay with me until I felt OK.  She did too.  She also very lightly sang when she wasn’t talking.  In fact at times it seemed like she just sang and the rest was telepathic  Slowly the panic subsided and then passed.   It is no doubt the most comfortable I ever felt in the ICU. 

I never go the young ladies name but I will never forger her kindness.

 

Boone

 

 Higgs.qzqqqqq

Day T+ 41 and still counting.

I thought I would leave in the first line.  I captures both of our mental states pretty accurately.

Getting out of the hospital apparently is a euphemism for you can sleep at home now.

What the big surprise is that you have 7:35am appointments at the doc's office for eternity.  Ok...

Then you find out those appointments last 4-6 hours, possibly more.  Wonderful...

On our first visit,  Boone complained of chest pains.  Dr. S. poked him in the chest and asked as Boone howled in pain, is that the spot?  Yep.  That's the pain from the CPR three weeks ago.  My advice is to try and stay away from the ICU and especially try not to go into cardiac arrest.  They beat the crap out of you.

Each visit begins with the obligatory blood draw.  Then they put in an IV to give you whatever chemical cocktail the blood draw determines that you require.  Thus the variation in length of stays.  Some of the meds are potassium or magnesium and more immunosuppressants, antibiotics, saline, and nothing that anyone could consider "happy juice".   The best that can be said for it is he gets to nap during the IV part, and I get to leave.

For me, that's a sanity saver.  (I wonder what shape or taste a Sanity Saver would have?  Would they come as a single serving, or in a Sam's size crate?  An escape hole in the center?)

Hopefully, today, Boone will replace me as the blogger.  It's about him and the CMML not me and my woes.  For all of our German readers, I assume you must be here because you or someone you care for has CMML.   I hope his insights will help you understand better what to expect.  Of course no two patients are the same, but no matter your age or  co-morbidities CMML is a very tough opponent.  You must fight it with your mind as well as your body.

If you are the patient, I suggest you don't research the white papers for the disease.  Let your caregiver do that, and don't ask questions.  The less you know I think the better.  Also keep in mind, this is such a rare disease that there really isn't a lot of data for the docs to use.  It's a whole lot of experience with other blood cancers and a dribble of CMML info.   Boone is our clinic's second CMML patient.  Statistically that makes them well experienced.  It's a BIG clinic.  Thousands of patients.

There were days where I could tell the docs were very worried.  When you hear " bad", "wasting", "worried" from the doctors, you know things are not what they want them to be.  Our doctors are the best at framing everything in the most positive manner.  Probably all cancer doctors are adept at that. So less encouraging words are definitely red flags.  But somehow there is always something else to try to see if it works.  Sooner or later, they will figure out your magic cocktail.

Even with so many set backs Boone is still here and getting stronger everyday.

And B-, BS, donor, lil sis, and bro;  he is having hot flashes.  ;).

I guess it's a good thing he likes pink and Pink.

(Boone did post.  Because I'm later in the day, his is below).

Thanks to everyone for caring...through this I've learned that when you don't know what to say, just be there.  There isn't anything to say.  Just be there.

Thank you
Gracias
Danke

April 11, 2013

Day T+41 – I’M BACK

 

but hardly with a vengeance.  I had to make coffee and then rest from that just to get this far.  At home but still have to be at the DR. everyday about 7:30AM for blood work and IVs.  That will go on for another couple of months or so.

I read somewhere before I got started that sometimes you would be too tired to read.  Hard to believe but true.  I’m very slowly getting better but am still like a new born sick puppy.  But I will write when I can.

I want to, with all my heart, thank each of you for your support.  It means so very much.  I especially want to than my brother and all the friends who help babysit me.  Of course there are not enough possible thanks for Pauline.  I’m pretty sure I’d still be in the hospital without her;  That or dead.

I’ll write again soon.  Gotta recover now.

 

Boone