Day +9

Hello everyone, Emily here.  Thought I would update you on how my Dad is doing. 

He is now Day +9 or 9 days from his transplant day.  His white blood cell count or absolute neutrophil count has hit rock bottom,  as in 0.  He has no white cells or no way of fighting infection right now.  This is his most vulnerable time and the goal is to keep him from getting any infections which could make him quite sick.  A couple of days ago he had a low grade fever and had blood cultures drawn but so far they don't show any sign of any bacteria growing.  He is on some good antibiotics and is being watched closely for any signs of impending infection.

These last few days have not been easy on my Dad.  Being a bone marrow transplant nurse who takes care of children I see and deal with transplant patients all of the time.  It is not easy to watch little people go through transplant but I would say that it has been much harder watching my own Dad go through it.  Much harder than I realized it would be.  He has been suffering with fatigue, nausea, diarrhea, loss of appetite and just in general feels like crappola.  On a  happy note, he has had no mouth sores!  Maybe all of the ice he so faithfully chewed as the chemo was infusing paid off!   In the last couple of days he has received two platelet tranfusions and two red blood cell transfusions.  Along with his white blood count dropping his platelets and red cells have taken a dive which is to be expected.  So he will continue to get transfusions to keep those cells up. 

Now we just wait and get my Dad through this really rough period.  Soon, hopefully in the next week we should see some white cells starting to appear which would mean the stem cells that he received are taking hold or engrafting.  Things start to look better once this happens and hopefully he will regain his appetite and the nausea will subside. 

Through all of this I have been so impressed by my Dad.  He does not complain!  He is a silent sufferer and I admire and love him so much!  He has been getting many medications to help with the nausea as well as his regular meds that help him with sleep and neuropathy pain, so he is sleepy a lot of the time.  He still pushes through each day and faithfully walks or bikes, does his mouth care four times a day (which is super important for transplant patients) and keeps up on current events as he reads the Trib each day.  My Mom has moments of feeling very overwhelmed and worried but each day is by my Dad's side to care for him, comfort him and love him.  She is so good. 

Thank you to all of you, brothers, sisters, cousins, Grandma Cain, nieces and nephews, friends and neighbors for caring and praying for my Dad.  We feel your prayers and your love.  It really means so much when you mention that you are praying for him or placing his name on prayer rolls in the Temple.. Thank you, thank you. We know that Heavenly Father is aware and loves my Dad and is blessing him. 

We have such hope that this transplant will do all that is possible to bring recovery from the Myeloma.  We will keep you posted. 

Loves.  

ps.. I added some pictures and video of his transplant day below.  

Sunday, posted by Laraine

It's Sunday.  I love Sundays.  I went to our ward this afternoon.  So many of our friends and neighbors have expressed love and concern for us and have us in their prayers.  We feel a real strength from that.

Jeff  didn't sleep well last night.  The phenergan didn't seem to work like it has in the past.  He was given ativan early this morning but only kept part of his Instant Breakfast down.  He hasn't been able to eat anything else today.  His ANC level is now at 100.

Counts are dropping..

Today is Saturday, November 26, 2011, Jeff's ninth day in the hospital.  I (Laraine) have just arrived at the hospital (it's about 3:10 p.m.) and Jeff is sleeping.  I'm glad he's getting some rest and relief from the side effects he is suffering.

It has been a slow week.  Transplants are a slow process we're finding out.  Each day we are watching Jeff's blood levels drop.  Eventually they will be at or near 0.  Today his ANC is at 200, down from 900 yesterday.  So maybe Sunday he will be down to 0 and then we wait for engraftment and the production again of his own blood cells. 

Thanksgiving Day was not a good day for Jeff!  I came up to the hospital in the morning, left to have dinner with Jayne, Durell and family, Ed and Debbie and our daughter, Annie.  Our other children were each with their in-law families.  We had a delicious meal, fun visiting and playing "Pit" and the "write to 100 if you can" game!  I made a Thanksgiving plate for Jeff and brought it to the hospital, microwaved it really well and he was able to eat most of it.  Aly and Davie and Emily also stopped by.  Emily was able to visit with the RN and put a plan together to help Jeff with the overall yucky, uncomfortable feeling he has and the nausea.  He was able to sleep well Thursday night and actually had a bit better day on Friday.  When I came to the hospital Friday evening, he was sitting in the recliner and using the computer.   He ate his ravioli dinner and part of his roll and then we watched a video ("Dave") together.  He was able to sleep well Friday night but today has been another unsettled, kind of yucky day so I'm glad he is able to sleep right now.

The nurse came in to do Jeff's vitals, all is well, and Jeff has requested a peanut butter and jelly sandwich snack.  We have those items in our little snack area here on the 8th floor.  So I'm off to prepare his snack.  Jeff is hanging in there.   

Bone Marrow Birthday!

Waiting for Transplant to start..

Feeling good prior to transplant

Laraine is blogging for me while I dictate today. I haven't posted for a couple of days because I really haven't felt up to it. Sunday, November 20th, was a rest day after receiving two days of chemo. Not long after that treatment, food just didn't look good and it all seems to have a "greasy" taste. I really have to force myself to eat.


Monday, the 21st, was transplant day. Laraine and Emily came and decorated my room. I will always remember this day as my "Bone Marrow Birthday". I was given benadryl to make me sleepy. There was a nurse and a student nurse watching over me. I was given a total of seven bags of stemcells, all cryogenically preserved. The tech would "thaw" one bag at a time in a water bath until they were about 39 degrees and then the nurse would hang the bag and let it drip into me. It took about 1 1/2 hours to complete the transplant and then the dry heaves set in. I felt cold afterwards so Emily got a couple of warmed blankets, which made me more comfortable. I was able to sleep after that.

Bringing out the frozen cells

Hooking Jeff up to the transplant tubing.

The stem cells are infusing!

Transplant finished, now the stinky smell of cream corn sets in for a couple of days!  (That comes from the DMSO or preservative that the stem cells were frozen in)

Each day since then is about the same (the doctors say it's supposed to be boring) so that is good. They're trying to keep the nausea under control and I'm still trying to eat enough calories and protein. I have to wait another 10 to 12 days before engraftment and things start to get better. Right now my blood levels are dropping, as expected. Eventually I will bottom out and hopefully soon after I will engraft and my body will start making its own blood cells, my body will slowly start to heal and hopefully food will look and taste good again. Quite a process.


Aly and Davie are here from St. George for the Thanksgiving weekend. It's always nice to have my family around me.


CANCER SUCKS!

Two Full Days Down..

Well, after two full days here at LDSH, I can now say for certain . . . . that the food here isn't very good. "Well, duh!", you say, "It's hospital food!" You see, I was spoiled. When I spent five days at Intermountain Medical Center in May, it was my first overnight hospital stay in sixty years. And the food there was actually quite good--really. So I was surprised, and very disappointed, when IMC's sister hospital (both Intermountain Healthcare) was so blah.

I had a very bad night. First of all, I was hyped up about getting organized and doing a lot of stuff before bed, so that I got there very late. Then there was a misunderstanding about medications and I didn't get the ones I have come to depend on (NOT addicted!) to get a decent night's sleep. Then some of you (in fact both of my readers) may know what hospital bedding is like. You know how high-quality cotton sheets will have a thread count above 500? My hospital sheets have a count of 2. Finally, I had neglected to shave my legs for a while. What?! In the recent past I had shaved my legs because I am near-professional road biker (ha, ha, ha), but mostly because neuropathy makes me very sensitive to my leg hairs getting rubbed the wrong way by the sheets. Too much information? Tough. It will get worse.

To guarantee my getting a good sleep tonight I have taken these measures: 1. Too late; it's already midnight. 2. I yelled at the staff in my usual aggressive, take-charge manner, and we got the meds straightened out. 3. I shaved my legs with a dull safety razor in direct violation of a strict rule against shaving with a blade. 4. Laraine bought me some very nice, high-thread-count twin sheets to try out. 

A bad night led to a bad morning, mostly lost, mostly spent shaving my legs. I did get one good walk in. I always set my timer for 30 minutes and then whiz up and down this mostly deserted hallway. I even manage to jog a little, which doesn't sound like much, but remember I am towing (or rather pushing) the wheeled coat rack that holds whatever they are pushing through my central line (the alien-like thing sticking out of my chest).

Also, after begging repeatedly, I got an exercise bike today. Wahoo! Unfortunately, I hadn't been able to bike for at least six weeks, so five minutes on the indoor bike nearly did me in. And it's just not the same as being on a real bike out on the road. I will adjust.

Laraine came just in time for the second, and last, dose of chemo. Same result as yesterday. Nothing. It just goes in through the central line for twenty minutes and I don't feel a thing. But there is lots of peeing. LOTS! They pump me full of saline solution before, during, and after the chemo, and then I suck 4-5 glasses of ice during the process (to prevent mouth sores later). And finally they give me a powerful diuretic afterward, to flush out the chemo.

Emily joined us later, and helpfully wrote out my daily schedule on a dry-marker board that sits across the room from me. She also helped Laraine mount a big picture of our whole family in a frame that Libby contributed (thanks, Libby). It has heretofore been stuck on the wall with tape, and I get questions and comments about it by everyone who comes in. I am so proud of our family!

Laraine and I ended our day, as we always do, reading the scriptures (Ether-Moroni) and having our prayers together. Then, sadly, she went home. As she must. As hard as it is for us to be apart, she has to take care of herself, not just me. And there's a big part of her life that she has to keep on living, and she can't do it here. Besides, it can get really boring for her here, since so much of what goes on here--the hospital care--she can only watch. If you've done this, you'll know what I'm talking about.

Welcome to Transplant

At nine this morning I was admitted to the Blood and Marrow Transplant Unit on the eighth floor of LDS Hospital. Laraine came with me as usual, but Annie came as well, and was able to stay for a while. I was soon visited by all the usual team members: nurse manager, nurse, nurse assistant, physicians assistant, dietitian, social worker, respiratory therapist, and one or two others I can't remember. They are all very nice and want to help any way they can, but really there's not much they can do. 


Jeff's first nurse, Tony and Annie on admit day to the transplant unit at LDS Hospital

  

I have a nice room, though these are not as spacious as the ones at Intermountain Medical Center. I have an eastern view, which though it is pretty, faces the cursed block "U". I can see the Huntsman Cancer Institute and Primary Children's Medical Center, where my daughter Emily works. 


After we got settled, Laraine and I took a stroll around the floor. Each time I leave the room, I must wear a special mask, a gown, and gloves. And of course, I have to drag along the little wheeled coat rack that holds my liquid medications; I'm on a constant saline drip. They want a torrent of water going through me in preparation for the chemo. 


Taking a stroll around the unit wearing all the protective gear.

  

They have room service here. Rather than send up set meals at set times, I just call and order what I want when I want it. The trouble is, left to myself I don't eat very much, and they want me to consume a lot of calories and proteins. I have done my best--a big lunch and a big dinner, about twice what I'm used to eating. 


First meal in the hospital before food started tasting weird.



I got my first dose of chemo this afternoon, just as Emily arrived. They had me chew chipped ice before, during, and after the chemo, since studies have shown that it reduces the mouth sores that usually follow. The chemo itself (Malphalan) was uneventful. It was delivered via my central line over about 25 minutes. I shouldn't feel the bad side effects until sometime next week. 




Triple lumen central line, for chemo, blood and antibiotics!

 

 Brandon, Brad, and Libby have joined Laraine and Emily here in my room to glut themselves on Cafe Rio. I thought I would be more quarantined than this, but I'm glad for the company.