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

 

Day T+ 39 and counting...

The more things change, the more they change!  Boone was dismissed from the hospital today.  His stay was almost twice as long as the normal stay.  Three trips to the ICU, first because he turned into the Wolf-man (without hair), the second time because he went into cardiac arrest because of oxygen depletion; fortunately right in front of no telling how many people.  I say that because the third trip was with me monitoring his O2.  Within a very short time, less than a minute, several of the Rapid Response Team were in the room.  As you know they decided to send him over to the ICU before he had a chance to go into cardiac arrest again.

Through all these set backs, each one ended up with Boone doing a bit better.

Other bloggers have talked about being so tired they couldn't lift a spoon or talk on the phone; I can attest that those are not exaggerations.  The fatigue is continuous, and of course you are not allowed to sleep in the hospital.  For normal maladies anyone who has been hospitalized will say they don't let you sleep.   Try a blood disease.   They have several ports that stay in to poke all manner of things into you, but for some reason they seem to always require the blood draw from a new poke.

The chemo, at least in Boone's case made him extremely tender to the touch.  Even with the satin PJs and sheets, moving him hurt him.  Not until today, did it occur to me that the chest pains he's been having are likely from the CPR.

The troublesome issue is the cognitive functions., that were determined to be both the immunosuppressant chemo he was given post transplant and the opiates.  His eyes are still not quite right, still constricted, but not freakish looking.  He made the comment today that he was going to have to learn to open his eyes again.  He does keep them closed while he's awake unless you are nose to nose with him to communicate.

The interesting thing to me is that when he is asleep, he speaks distinctly and clearly, but when he us awake he sounds very feeble.

Boone was "not thriving" according to Dr. F..  A feeding tube was ordered.  Boone's awareness of his situation had improved, because he only pulled the tube out once.  Another chest X-ray was required to verify it had been repositioned properly.  The second time. He started pulling on the tube, he realized he was not supposed to do that and quit.  Still had to have another X-ray.

His brother and I discussed his situation and decided we were enabling him to not get up and do the things necessary to get well enough to leave the hospital.  I didn't go in last Saturday.  Tokyo Rose went in my stead.   For her he walked a half lap.  He sat up.  He fed himself.

Long story short, from Saturday to today, Tuesday once they got him to understand he had to eat and walk, suddenly he walked his mile with the PT.  next thing I knew Dr. S. said maybe he could be discharged by the end of the week, then Monday afternoon I got  a call from the case manager saying he's being discharged in the morning.  Wham, bam, thank you ma'am.  It took until just after 2pm to get all the different people in to do their thing.  On the way out everyone was smiling and waving and saying they didn't want to see him around there anymore.

Once we got outside Boone was saying hello world and taking in the beautiful spring day, just with the windows rolled up.  When we arrived at the condo, Tweak meet him at the door.  She seemed to know to be gentle.   Lyla ran back and forth, no doubt confused about the conflict between what she was smelling and what she was seeing.  But after a few minutes, she decided to go with her nose and went to Boone.   Leukka, being a cat, didn't care.

Boone rested a while, ate, and tried to sort out his pills, but was unable to.

After more rest, he decided to shower.  It's been a while, I guess since the transplant that he's actually showered.  I set him up an ice chest to sit on and I went in with him and bathed him.  Glad I decided to do that, he was too worn out to do it himself.

He is in the bed sleeping now.  I'm headed there soon as I take my pills.  Gotta be at the Drs. Office at 7:35 for a blood draw.  Every morning.

For me, I'm so relieved that he doesn't have all those tubes to scrub.  His immune system is in good shape.  No special requirements, no masks for visitors.  All that worry over something that didn't come to pass.  All we have to do is not be stupid.

I forgot to mention...

Boone has, as best I understand it, totally engrafted.  His white count is approaching 3, and he has a neutrophil count of almost 2!  ( I believe those are # x 10 to the 9th power.  Try typing in math on blogger....yikes!)  He is still low on the platelet count but all the other umpteen counts are looking good.

Dr F. said his chimerism is at 99%.  The only way I can explain that is like a Vulcan mind meld; the donor and the recipient's DNA have become happy together.

Day T + 34 and counting

Day 3 in the ICU.   Boone is now down to about 118 pounds.

As it turned out the Lung draining happened yesterday.  A very nice Dr. B allowed me to stay in the room to watch the procedure .   If you've never seen it done,  the Dr. comes in and sets up his sterile work surfaces.  Then he listens to the lungs very carefully from the back.  From this listening he determined where to insert the drainage tubes ; one for each lung.  He marks the spots with a marker pen.  Then the back is scrubbed with an antiseptic and  protective "sheets" with 4"diameter holes are are sticky backed to the patient's back.  The holes of course are positioned over the incision points.  The Dr. then injects a local anesthetic , then takes an exacto  knife and cuts a tiny slice through the skin.   A long thin needle with a tube over it is inserted into each lung sack.  They pull out a sample from each side, roughly a pint each, then hook him to the suction machine.  In Boone's  case they drained off at least 2 liters of fluid.   Once the draining is complete, they just pull out the tubes, and put a bandage on the slits.  Almost no pain.

Afterwards they X ray 'd  his chest here in the room.  I can tell that the bottom pert of his left lung has collapsed.

Today,  when I arrived he was unwillingly siting up in the chair.  The nurse said he'd been sitting up for about 10 minutes.  He said he had been up for 2 hours.   Dr. F ordered a feeding tube yesterday because at best Boone has been taking in only about 300 calories a day.  His ICU nurse and several nurses in training came in to insert the tube.  I was asked to leave.  Fortunately or unfortunately depending I guess on your attitude, the nursing instructor was standing in the hallway.  I told her everything I could think of that I could gripe about.   She listened politely.   I hope it does some good.  Although the nurses in the ICU are good, they don't know much about BMT patients.  They don't scrub the hub the way they insist on it being done in the BMT ward.

The X-ray techs came in to verify the placement of the feeding tube. It had gotten turned and was pointing up instead of down into the stomach.  They  had to take out the first one and redo it.  This time I was not asked to leave.  I don't see how anyone could tolerate having a hose shoved down their nose, then have to swallow several times so the tube can be snaked into place.   Boone looked like it really hurt, but maybe it was just a reflex,   There was only minor screaming.   We are now waiting for the X-ray techs to come back.

The BMT LPN came by and said they are hoping they can get a room on the ward ready for him around supper time.

In the mean time, I got him to drink his Ensure, a half bottle of apple juice and about 3 bites of some banana pudding.

Boone is back in his bed with the heat turned up on high, and several layers of blankets. He is sleeping soundly.  The best news is, while they were putting in the feeding tube, they had to remove his O2.   On room air he held his oxygen levels in the high 90s !

Day T+ 31 and counting.

Boone is much better this AM.  Sleeping peacefully.  All vitals looking good.  He is no longer has the mask, just the nose hose.  They are delivering about half as much O2 as yesterday and he's holding his oxygen level in the upper 90s.

They are going to drain both lungs this afternoon.


P.S.  TLS & B;  thank you very much.

April 1 update.

Boone was not able to maintain his oxygen levels today, even with a nose hose turned to full capacity.

His nurse thought he'd be ok to remove the oxygen sensor on his finger to eat his breakfast.  Boone hasn't been eating but about 900 calories a day at best, so they really want him to eat.  They've threatened to send him back to the ICU for a feeding tube if he won't eat.

Boone was so tired, but he sat up like they have all told him he must do to eat.  Everything tastes awful to him.  The faces he makes over the food, which is not bad for hospital food, would make you think he was eating something as nasty as a rotten egg.  He chokes it down.  After he had consumed as much as I could get him to eat, I started removing the food tray and tidying up a bit.  He just laid his forehead down on the serving table thing and didn't move.

After I finished what I was doing I went over to see if he wanted to lay back down.  As if I had to ask.  He gets no sleep because of anxiety issues and I guess the cognitive issues.  He stays confused a good deal of the time, and is perfectly fine at other times.  Anyway yes he wanted to lay down.  So I helped him lean back into the bed. He curled up into a fetal position.  I slid him up in the bed a bit and tried to straighten out his legs.

For some reason, I decided I was going to hook up the oxygen sensor.  It was on 70 and dropping.  I shook Boone and in a command voice I've learned from the nurses, started to tell him to breathe.  In through the nose, out through the mouth.  I'm hanging over him saying this over and over and watching the monitor.  His nurse came in at that moment to see the low oxygen level on the monitor.  He must have hit some silent code call because within seconds people were coming in the room.  One person took 8 minutes to get there and was frowned upon by the rest of the rapid response team.  It was too long, doesn't matter she was across campus.

They all gathered about, listened to his lungs, and his vitals.  By this time, he was getting his levels back up into the 80s with me telling him to breathe.  They decided to put a mask on him.  That didn't go over too well.  Boone's anxiety level went sky high.  It was scaring him.  He kept trying to take it off.  It took me and two nurses to get him to understand he had to have this mask that forces oxygen into the lungs and sucks old the old air at the same time.  Within a minute of him calming down his numbers shot up to the upper 90s.  He would forget and still kept trying to remove the mask.

It was determined after much discussion that he should be sent to the ICU rather than wait for an episode like before when he went into cardiac arrest, to happen.  They had his chest x rayed, blood drawn, a pulmonary specialist check him and I don't think they really know why this is happening.  It could be lots of things, apparently.  Last time it happened there was mention that it could have been related to the transfusion.  He got two bags of whole blood and  Benadryl last night.

So we (Ms. A and I ) cleared out his room on the BMT ward.   This is his third trip to the ICU.  This time they didn't have his bed stripped.  They like the satin pjs and satin sheets and were mildly impressed with the electric blanket underneath those sheets.

Boone was a bit panicky.  They started to put that same type oxygen mask on him.  He started making noises that sounded something like howling and crying at the same time.  He was afraid he was about to die.  I stroked his head and explained it all to him while the ICU team did their thing.  Finally, I got him to promise to not take off the mask, or pull on his IV.  I had to tell him not to be afraid, that he was just there to make sure he didn't get in danger.  He started breathing a bit slower and easier and began to drift off to sleep.

Day T + 30 and counting...

Last Saturday Boone seemed to be getting much better.  I was just about to leave to head to the farm for much needed R&R; to play in my moss garden and let the puppies run.

Dr. S came in and said someone (me) needed to be here round the clock at least over the weekend, to keep an eye on him.

I lost it.  Just plain and simple, I went a little bit nuts; well maybe a more than a little bit.  I was crying uncontrollably.  Just having a breakdown. I could not deal with the idea of being here round the clock.  Dr S said "You can sleep on that (incredibly uncomfortably hard and awkward) chair, people do it all the time."  I think that's when I really lost it.

I've been an insomniac since college.  It's been only since about 4 -5 years ago that the right combination of meds allowed me to sleep.  I was never treated for the insomnia, I guess my doc never believed me when I said I didn't sleep, even though when I had a sleep study done, all they said was that I didn't sleep.  In my old age I've developed Fibromyalgia and Restless Leg Syndrome; yes the thing all the comics like to make fun of.  Let me tell you it is very painful.  So I take a lovely drug cocktail that kills the pain and most wonderfully allows me to sleep.   I realize this isn't about me, but I was going nuts thinking I'd be back to not sleeping.  Now that I know what it's like, I really don't want to go back.  I don't think my body could take it at this point.   My point. Is, I suppose, is that Drs  should be more aware of the caregiver's situation.  Some of us are not capable of the martyrdom required for staying at the hospital twenty four hours a day.

I called Boone's brother who is a crisis counselor.  He immediately recognized I was having a meltdown.  He jumped in and rounded up friends so he and they could give me all day Sunday off.  I slept all day.  Thank you all so much.

Now it is Monday morning.  One of my girlfriends, bless her heart took the graveyard shift.  Since I was here Saturday morning,  he has had 2 units of whole blood.  His hemoglobin count was getting very low, the good news is, his white count is up to 1.2.  Still no neutrophils.   They gave him Benadryl to counteract any issues with the blood.  We sure don't want another trip to the ICU.

Boone is still not able to sustain his O2 levels on just room air.  Herein lies the problem, he is very confused and isn't sure what's going on, so he keeps pulling his O2 line off.  He pulled his IV line out last night.

He is very restless and struggling to understand what's happening to him.   He looks like he is in pain, but when asked, he says he isn't.   I hope he gets his own cells growing soon.  He's just not thriving at all.

Breakfast is here.  Time to get him up, make him eat, clean him up, and fix his bed.