Pre-transplant journey

Cycle 1

Pure shock, I just went with flow.  All said and done between the hospital in which I was diagnosed at, and then transferred to University of Miami, I spent 34 days in the hospital.  I had mouth sores, gained 20 pounds in fluid, lost 20 pounds of fluid.  I tired to understand what was going on with my numbers.  One day when the oncology team visited I told them I was tired of being a lab rat, and tried as I tried to comprehend my numbers.  The following day I went with a new outlook on this journey, and asked…. IS MY BODY DOING WHAT IT IS SUPPOSE TO?!  Yes!  Great I will see you tomorrow.  At some point I lost my hair with the exception of random strands that looked foolish.  So I did have the little left shaved.

Secret to the 34 days.  Smile!  Love on everyone who walks through the door, from the people cleaning, to the food staff, nurses, doctors.  Fill your soul with joy!  Get out of the bed!  Sit in the chair.  I stared into space a lot.  WALK!  I walked more than I can tell you… my goal was 3 times a day.  Granted only 10 – 15 minutes each time because walking in circles is BORING!

SETBACK DURING THIS STAY.  Towards my discharge, at 6:30 AM, I was out walking.  Apparently I speed walk.  I did not have my new BFF (the IV buddy pole) so I was not waking everyone up.  a patient at the other side of the L-hallway stepped to his door way and asked how long I had been doing this, looking for encouragement.  He was on day 2.   As we spoke and compared notes, I suddenly started to get very warm.  I felt the world slipping away.  Oh yeah, you know it, I was going down!  I found a near by table (you must avoid falls at all cost) and sat, calling for Jennifer (an amazing nurse who was going on shift at 7:00 am, also a student from the high school I taught at).  I crawled across the table to the sofa.  Not sure what really took place next.  Alcohol swabs, wet towels, blood pressure, many nursed.  I have never passed out in 58 years.    NOTE:  Dehydration…. not a good thing. 

I was never so happy as the possibility to go home.  But to get home…  I needed a blood transfusion.  I was so angered by this.  I didn’t want to have a transfusion.  But imagine this… they knew what they were doing.  Remember the above almost passing out episode.  Well because my red blood cells were low, my oxygen was low.  As soon as the blood hit my system, my pulse rate slowed.  My breathing which I had not noticed as a problem became better! 

Although it was to be a short visit home between cycles, healing at home is so much better.

Cycle 2:

Cycle two started out with a bone marrow biopsy prior to hospital admission for chemo.  On day one of the hospital stay, when the oncology team was rounding, they were looking at my data, and the oncologist who was on rotation this week says to me, with a great twisted sense of humor … “Oh, and your bone marrow biopsy!  shows you are in remission!”

ALL PRAISE TO THE OUR LORD GOD IN HEAVEN ABOVE! 
                                                     But what does this mean? More medical stuff that is above my comprehension. 

Not much else I recall about cycle 2 (recall I am starting this months later)  I did check my notes – I do want to mention my notes.  I started recording everything.  First in notebooks – well they have all been lost.  So I went to a simple word document on the computer.  I record date, weight (partly vanity but more useful than vanity)  when I was in hospital, setbacks, transfusions etc.  Granted everything else I can get on the UM patient portal (all hospitals have this, you should definitely sign up and familiarize yourself with yours).  But during these two cycles my main blow to my ego was the need for transfusions. This time platelets.  Again… needed!  And very Beneficial.

Cycle 3:

This cycle was special for me.  And I hit my first huge brick wall.  Don’t remember what night it was, I believe it was my third night, as it would have to have been because I went home the next day.  In the middle of the night I woke up and when I took a deep breath I coughed and hacked like an overweight smoker.  Let’s try that again.  Yup, same thing.  Give it a third try.  This is not good.  Let’s go to the RR.  Oh my goodness that 10 foot walk you might thought I just ran a half marathon.  Call the nurse… yes my lungs were filled with fluid.  NOT GOOD.  At the conclusion of day 4 they did a chest x-ray and sent me home.  When I was able to see the report on my patient portal… it was not good.  Called transplant coordinator crying, is this going to prevent a transplant.  Called my doctors office crying.  3 weeks of x-rays before the lungs were clear. 

Communication with what is going on in your body is key!  This fluid caught me off guard, but I started to suspect the day before, as they did do a bed side chest x-ray before the third night.  I do think they overlooked the severity of it.  However, with continual x-ray and pulmonary function test, all have mentioned that I have big lungs.  This is not something new to this cancer treatment – I have been told this since I was in my 20’s.  Know your body, and communicate with your doctors.  You are the biggest part of this journey.  Ask questions regardless of how silly you feel.

My biggest mistake… I had stopped walking, and I had stopped getting out of bed.  HINT:  The bed is for sleeping…  get out of it!  Disclaimer, again writing this after the fact, I stayed in the bed most of cycle 4 and cycle 5.  I have started to lose steam.

Cycle 4:

The chemo visits seem to be the easiest part of my cycles, it’s day 5 – 14 of recovery that kick my butt!  This cycle, I made a big deal about fluid it my lungs, they were proactive and started me on Lasix each day.  I still gained like 20 pounds (exact number not known) But the fluid was NOT in my lungs, much.   But let’s talk about the days after I left the hospital and my 4 day chemo treatment.  I am not sure on what day it started…  but I started needing platelets.  I think in total I had 11 units.   I put in my calendar the 5 units I had up until Friday.  Had to be readmitted via the ER, and since I do not bring my computer, did not record them, and lost track about there.  Know your body.  Those big red spots on my bald head (which were there before the ER visit and during my transfusions prior) not normal.  And those red dots all over my hands and feet, not normal.   Your doctor will tell you to check your body temperature, and if this happens to go to the ER.  Well, 101 fever!  Not good.  YOU ARE THE MOST IMPORTANT RESOURCE IN YOUR JOURNEY! 

Between Cycle 4 & Cycle 5 ER visit!

Nurse abuse!  I just want to mention here.  10%, that’s my number, it may be higher, and it may be lower.  All jobs, especially those thankless ones  (nurses,  first-responders, and me the teacher)  have about 10% losers.  Unfortunately, in our society that 10% outshines the other 90%.  Try to focus on that 90%.  They truly are wonderful. 

But like everyone else I have to tell you about my 1 bad nurse.  It was after I went back in the hospital via the ER because I spiked a fever and had critically low platelets. (2 if you are wondering)  The next morning after being admitted, waiting on some juicy platelets, my assigned day nurse tried to give me medicine I should not be taking.  This is the main reason I mention this nurse!  Know what you are taking at all times, question it.  It would not have caused me any harm, but I knew it was NOT  to be taken 2 hours after my chemo pill. 

Just to finish the story (so you know I am human) I quote what the nurse said to me (in front of my husband who was in the room)  “It’s not like there is anything we can do for you anyway”.  He tells me this as my platelets were at 2 (yes 140 is the lowest minimum for normal), and I am waiting on my transfusions.   He implied I was a goner, dying, checking out!   That was how my morning started, and the written word cannot describe the vile attitude that went with these words. 

The evening abuse, which is worth mentioning because of the advice given to me by a friend, happened when I ripped the heart monitor off.  I had asked for him to come see me, as it was hurting me, my rib cage consist of the least amount of fat on my body, you recall my body was  at a low platelet count of 2, and was being bruised and getting sores from the things stuck to my ribs and chest.   More than 90 minutes after my husband had walked to the desk and asked for his assistance, and he never came, I took it off.   That got his attention.  Well he was mad when that happen, came in, verbally assaulted me with major attitude.   Yelled at me, saying he has been sitting in his spot in the hallway for the last hour everyone knows where he sits.  (this is my responsibility how?) He came back with more attitude and  a piece of paper that I HAD TO SIGN TO RELEASE THE HOSPITAL OF LIABILITY BECAUSE I REFUSED TO WEAR THE MONITOR.  Jokes on him.  I was on the phone with a friend, on speaker, who is a lawyer.  Said friend had me cross out everything that was not true, such as the doctor spoke to me about the importance of wearing the monitor, (that never happen) Etc etc.  Finished with my mark up, take picture, send a copy to husband, and adult sons for safe keeping.  Document at the bottom as to who it was sent to. Sign and initial everything.  MY POINT… read before you sign, adjust to the truth as you see it, and take a picture to send to your people, and document who you sent it to.

BTW…  they did not need the document, and there was no reason for me to wear the monitor.  Remember you are the leading lady (or man) in this motion picture.  Act like one.

Cycle 5

This is when I have started this blog.  I started it mainly to blog my transplant journey, as I cannot find things to encourage me, or to advise me as to what I am up against.  But before I go there, let’s discuss cycle 5.  As I am typing this, the court is still out on how cycle 5 is going to go.  Today is day 14 since I had first chemo transfusion.  Labs at 10AM to know the counts.  So far I have not need blood or platelets.  I consider that pure joy and reason to celebrate.  Day 14, day 15 is what they call my NADER?  STILL DON’T KNOW WHAT THAT IS.  Although it has been explained to me several times.  To me that is the day I start to feel human again.  I was really really sick this go around.  Carbs became my BFF the first 3 days home.  Something weird is going on with my body… and I am concerned, but not completely freaked out.  BECAUSE GOD IS STILL ON HIS THRONE.  Monday, the day before being admitted, I had a bone marrow biopsy.  Wednesday I had my lumbar puncture.  I laid flat on my back for an hour as instructed (well I am OCD so it was an hour and half) then got in my chair.  When I went to get out of the chair, the pain between the biopsy and the puncture was so bad, I could not stand on my left leg, it was numb and Houston we have a problem.  I was told to sit and rest it.  Well if you are going to tell me there is nothing wrong, I am going to walk it off.  30 minute walk, feels okay.  My entire left side of my body, from the temple of my head to my big toe is not happy.  I have floaters in my left eye (visited Bacon Palmer ER… )  The tension in my neck and shoulder will not relax.  And the pain and stiffness between the Lumbar Puncture and the Biopsy is so tight.  The headache I get every time I stand up or bend over is unreal. It has gotten much better, however something is not right.  Doctor appointment tomorrow – should know more.   According to Dr. Google (LOL) it could be a mini-stroke, and spinal fluid leak, or I am sure there is something else I don’t know about.  Quite frankly I don’t care – just fix it, and please nothing that will stand in the way of my transplant.

Cycle 6:

I wasn’t suppose to be seeing Cycle 6!  Cliff  note…  I was suppose to go to transplant before this cycle.  Cells were collected and are in Miami.  They can’t use them because of all the antibodies I now have from all the transfusions after cycle 4.  BUT…  I am in CMR, complete molecular Response/Remission??   Not sure what that means, but they are saying I may not need a transplant??

Cycle 6 has come and gone.  This is 3 days after!  Am I always this sick! Cycle 6 was much easier with a lot of hope involved.  The week prior to my stay at the hospital my oncologist and team told me I was in CMR.  Not really sure what that means.  But he did say I may NOT need a transplant and there is a lot of research that I can live relapse free for years.  Can not wait to see them again and get more details.

The secret is definitely to seek God first!  Be positive, and get out of bed.  It may not ward off the water weight (yup lasix and 15 pounds of fluid)  or the nausea, but it makes it more bearable. 

But just when I thought I had sailed through cycle 6….. These even cycles, known as Arm B to my oncology team, KICK MY BUTT!  10 Days after the start of the chemo, platelets dropped to 3, and let the transfusions begin.  9.5 bags of platelets and 2 bags of red cells I think I have turned the corner.   

First…  notice the half bag!  LOL.  As I was on my 2nd bag of platelets the first day of transfusions I suddenly didn’t feel “right”  and well I suppose I passed out.  The ER doctor (yes the  clinic where I get blood, transfusions etc called 911).  Anyway the ER doctor said I had a “seizure like episode”.  But since the hospitals suck, they didn’t run any test so I will never know.   Looking back…  suddenly the mask I have to wear (and frankly want especially when white blood cell count is at .4) started to suffocate me.  Then I felt like I couldn’t get a deep breath of air, then I open my eyes as waking up from a dream with everyone who worked at the clinic around me.  FUN TIMES…  But no explanation as to what happen.

It is now 21 days after the start of this cycle, and I have started the turn towards the next cycle.  But interesting enough, I am really tired and all I can think of is did I relapse!???  Why do I wonder this.  Because I am tired all the time.  

Cycle 7

Well Cycle 7 has happen!  You know, be careful what you wish for they say.  Well I should add to that, be careful what you think you know!  I always thought that my ARM A cycles were easy. LOL…  well maybe not after 6 cycles!  On Day 3, the steroids betrayed me!  I became an emotional, crying nasty individual.  And then these chemo drugs that I did Cycles 1, 3, 5… WELL!  The names are the same on paper… but my body decided to act like a stranger to them.  I was sick for 9 days.  AND FATIGUE…  all I did for days was sleep.  THEN, on day 11, with my 15 minute vincristine drip of chemo, I was back on steroids for four days.  (FYI IN 3 HOURS I WILL TAKE MY 4 DOSE).  But this time…  something weird has happen.  NOT SLEEPING at all!!   This has never happen to me.  I have gotten 2 hours asleep a night AND can not stop eating.  Day 2 of steroids, I went to bed at 10PM got up at midnight, breakfast at 4AM Lunch at 8AM snack at 11AM Snack at 12:30 PM….  and on and on and on.  Went to bed at 11PM last night, slept til 3AM…thought I got 4 hours of sleep and was excited, until I realized the clocks were turned ahead a hour and it was only 3 hours of sleep!  LOL!  My poor husband.  I think these moods are worse than menopause every was.

Moral of cycle 7…..  don’t expect it to be what it was the last time!!  Could be better, could be worse.  Every round has presented itself with a different adventure.

Cycle 8

Well, cycle 8 got off to an interesting start.  There I was at the hospital ready to rock and roll.  We were going to start out with my monthly lumbar puncture (YUK).   The lumbar puncture turned into a bone marrow biopsy to check to see if I had relapsed, and sent me home.  I DID NOT RELAPSE (AMEN!)  and cycle 8 was delayed for 3 weeks.  Cycle 8 actually came and went with very little drama!  I only needed half of the platelets I normal need after a B cycle and not blood.  Best part of cycle 8 was I got to  ring the bell and was happy to be leaving the oncology floor.  On to maintenance we go (or so I thought) 

Maintenance month 1

So maintenance started 7 weeks after my last cycle.  Much to my joy I got to start it with another lumbar puncture.  I started with 5 days of prednisone, one of the two pills I was going to be taking, and my 15 minute vincristine drip.  Not that bad – even though my numbers were not recovering.  AND THEN!

Two weeks later, my liver enzymes increased 1200%  Yes from 17 to 204.  Well obviously my body did not like these drugs.  BUT I also became MRD +.  Back to the oncology floor we go, and now we will try immunotherapy.  OH AND POSSIBLY STEM CELL TRANSPLANT AGAIN….  ALTHOUGH I DO NOT WANT TO!

Blinatumomab cycle 1

This was not awful!  Having to remember to grab the bag every time I moved proved to be an interesting task.  Overall, 4 weeks with my buddy (I nick-name the bag George Jr.) went by with no huge setbacks.   I did however develop a rash.  Although very light, and really you would only notice it if you were to get very close to me, or touch my skin.  I did have sores in my eyes – that you would obviously notice…  and a crusting look on my face.  I aged 10 years – so not happy with that.  But overall it was  not awful.

Blinatumomab cycle 2

Cycle 2 has come and gone.  I am actually 2 days before cycle 3 is to start!  BUT…  insert a very calm state of anxiety!  WHY??  Well I feel amazing!  I am confident God has healed me!  My rash is still all over – but improving!  My face is slowly improving I only look 8 years older vs the 10 years older I looked a few weeks ago.  The sores in my eyes have improved!  I am getting better.  BUT…  DOCTORS TELL ME…  I need to go to transplant.  Although my doctor will deny this…  He walked in and said “you are going to transplant right”.  I stuttered as this is not what I expected him to stay as he entered the room.  My stuttering mounted to something to the extend that I did not go get a second opinion.  To which he replied, you should have, you need to hear someone else tell you that you should go to transplant.  SHOCK!!!  Then the all time comment.  “I don’t want you to relapse and die”  Sorry for my mouth but can we say WHAT THE HELL!!!  So now I anxiously wait, and worry, to see my transplant doctor…  and hope that I don’t relapse and die in the time it takes to get said transplant.  OH…. and that transplant itself doesn’t do me in.

Stay tune for Blinatumomab cycle 3!

Blinatumomab cycle 3

Cycle 3 is about to be in the books.  Not that I am counting (Oh yeah I am) but I am 11 hours away from being disconnected from my last bag of this cycle!    It has not been an easy cycle!  On day 18 I landed in the ER with a 102.? fever.  The cause – unknown.   Here it is a week later and what has been posted to my chart all indicates negative.  The problem is, what hasn’t been posted to my chart.  To keep me in the dark on my results is so unfair.  If there is a problem, post it to my chart OR FREAKING CALL ME!  But don’t make me wait for my appointment a week later.  Granted they don’t want some lunatic emotional patient calling them before the scheduled appointment, but to blindside me and emotionally paralyze me with a bunch of words I don’t understand is not fair!    Oddly enough, they have not my test results or scan etc, but my diagnosis now reads hepatic steatosis.  But no phone call, nothing posted in my chart.  Post my results!  Rant over!    Just so you compare, and or have peace of mind,  they did stop my TKI because of my liver enzymes – and I suppose I will wait until my appointment, tomorrow, to know what is going on with me!   I know they do this on a regular basis – BUT IT’S MY LIFE!!  Oh – and the bone marrow biopsy hasn’t posted either.  POST MY STUFF.  Okay – now rant over.  

Stay tune for Blinatumomab cycle 3!