Thursday, September 30, 2010

Day 2 - At Home

This morning was a bit rough, waking up to diarrhea then trying to eat just something only to start hurling it all up, sorry.....Took some of the prochlorperazine which really seemed to help so hoping we can keep some of these symptoms under control. I think alot of it might be the medication, it's smells bad and it's not easy taking the meds with an upset stomach. I have to go back into the lab everyday for blood work and to make sure there is no sign of infection as this could be deadly for me with no immune system. Apparently my cell count is just on the downfall, so I won't feel the full effect for a few more days, they said usually day 6 or so is the bottom. Once I get to that stage they will give me those nupegen shots again to boost cell growth. These new cells are my goal. So one more day down few weeks to go, but just realized that I will be sporting my port over the holiday again this year and that sucks.......

Day One -Transplanting Cells

Getting ready for the first set of cells, they break it up into two sessions. They first hooked me up to monitor blood pressure and heart functions during the procedure.  Along comes the man from the blood bank I saw last week pushing a little cart with my 7 bags of cells,  frozen in a bucket of liquid nitrogen and a warming machine.  He has to thaw out the bags and insert them into a syringe that must be injected within 10 minutes or the cells are no longer good.  They access my port and begin the injection and within seconds my first reaction.  A common reaction from others was that of the taste of creamed corn or garlic, some others also said they has the taste of crab dip or seafood. Also, this smell can be noticed outside of the room by others and will come off of me for the next few days. They have you suck on mints or hard candy to avoid this while they inject the cells. I did not get any of those tastes just a burning, itchy sensation in my throat that was a bit overwhelming and ceased once the injection was completed.  After the second push they gave me benadryl as this scratchy sensation was getting a bit worse and it seemed to be affecting my ability to breathe normal.  The benadryl seemed to help, but with each syringe of cells the sensation came back about  halfway thru the push, but left just as soon as the  injection was finished.  It was all over within about an hour, feeling ok now but having a real hard time concentrating on this typing so I will end for now.  I have 9 more bags to go which will be around 2:30 and then hopefully
nap time as I didn't get much sleep last night.  I will let you know if I am veggie or
seafood as soon as someone comes back in the room, they all left so not sure what I am emitting right now!  

Wednesday, September 29, 2010

Discharge Day

Well they let me go home this morning, actually got out of the hospital around 9:30 today. Felt pretty good this morning when I woke up, tried to eat some of that good old hospital food but only managed to get about 4 bites in, that was good enough. They sent me packing with my 5 new prescriptions, anti viral, anti bacterial, nausea ...not sure what else. Have to take temperature four times a day and need to call into the hospital if I get over 100.4 or if I start to get the mouth sores, I think that might be grounds for another night at the spa as I call it. I am starting to feel the effects of the chemo I think, mostly just my stomach, like a rolling feeling that comes and goes. I think it might get worse before it gets better so I will close now, I want to get a few more bites in me as I don't think I will be eating anything for a few days, or very little. They want someone with me around the clock, I really must apologize to those who have this duty because it's probably not going to be fun...

Tuesday, September 28, 2010

Transplant Complete

Well, the verdict is back, it's creme corn from outside my door. It's very strange as I do not taste or smell anything different and they are all getting this with masks on! So the last 9 bags of cells have been injected and all went well, it was actually a bit easier this time, not so much of the itchiness in the throat this time. The doctor was in and said everything went well and they will check out the labs in the morning and I should be able to go home tomorrow, amazing! He said if my temperature reaches over 100.4, or mouth sores develop I need to call in immediately and would probably need to come back. Very strange that my current temp is only at 95 .....So the biggest issue now is not to get an infection of any kind and stay as germ free as possible, and hopefully get some rest. Never got that nap mostly because of the frequent bathroom visits as they are pumping me full of liquid, but other than that no other side effects as of yet from the chemo but I think it may come soon. Hopefully I will be blogging from my couch at home tomorrow afternoon.

Day ZERO

Still Awaiting the effects of the melphalan (chemo) yesterday, just a bit of sleeplessness and sweating but that has been the norm for me over the past year or so with the other drugs. Today will be the actual transplant of my own cells back into my body, they call it Day 0. They should be in to do some blood work shortly to make sure the chemo did it's job and I am pretty much bone marrow free, cell less. Looks like they have 23 bags of my blood frozen and I will get 9 bags today, a total of 4.9 million cells overall but approximatly 2 million needed for todays procedure. The rest will be kept here at Hershey in case I need another transplant.
They advised me to make sure any person entering my room today is wearing a mask, it's my well being at stake and I should not be around any germs today as I wont be able to fight any thing off for a few weeks. Another thought, as a friend also mentioned to me who knew someone who had this procedure is that you have to get all of your immunizations again as they have all now been erased. My doctor did confirm that yesterday buy that is about 6 weeks down the road. So please let me know when any of little ones I am around have been exposed to the chickenpox!!

Monday, September 27, 2010

Chemo Day

Got to Hershey Medical Center around 11am today and right to what they call the infusion room for lab work. Just a couple of tubes of blood and met with the doctor for a quick consult to make sure I was feeling ok and healthy today. Got checked into the room and I must say , this is the cleanest hospital I have been in, it actually smells good. They started, off by cleaning the port ends and changing the dressing, an EKG, and 25mgs of dexamethasone. All the while I amstill in the clothes I wore in, no one size fits all hospital gown needed. Another chat with the floor doctor and he has placed the order for the chemo drug. They have to administer it within 30 minutes of mixing it and he is here with it right now. They are giving me 340 ml of melphalan as I type over a period of 15 minutes. They make you chew on ice as they administer the drug to restrict the blood flow to your mouth to try and prevent the mouth sores that often happen. So need to go so I can eat my ice, I will be back in a few hours...

Wednesday, September 22, 2010

Awaiting the count

I have completed the 2nd harvesting of my cells. It was another 4 hours on the machine today. Just a bad headache and some diarrhea but otherwise painless. I am hoping they got enough cells this time, I am assuming they will call to confirm that later today but not sure. Otherwise it's a little break until next monday, that is when the real fun will start. They said I should come into the med center early to do lab work and then hang out until they have a bed ready for my 3 day stay. It will also be chemo day. Although I have been on the Revlimid and Velcade for a year this will be a very invasive treatment that will take away all my bone marrow as well as all my hair and make me quite sick they say. So till then, it's rest and as little germs as possible, need to stay well.

Second Harvest

Well, must have been the moon, wasn't quite right. Had to come back to the medical center last night around 8:00 pm to get three more shots. After they counted my cells they only had 2.4 million cells. This is enough for the transplant but the doctor wanted enough for a tandem transplant that may be needed 6 months down the road. The cells will be frozen until they are needed at that time. So,we are back at the blood bank this morning for another cell extraction and hopefully another 2 million plus cells.

Tuesday, September 21, 2010

HARVEST DAY

Currently at the blood bank at Hershey Medical Center hooked up to machine that is extracting my blood. No issues from yesterdays shots other than a really bad headache last night. So they will keep me on this machine today anywhere from 4 to 6 hours depending on how my cell count is, not sure when they will know that. They monitor your calcium and potassium as this process depletes both so you receive it back via the iv. Apparently after the collection it takes 2-3 hours for them to extract the stem cells from the white blood cells they just collected. They won't know until that time if they have enough cells or if I will need to repeat the process tomorrow. All is good for now, feel normal so I will update in a few hours or if anything changes.

Sunday, September 19, 2010

9-18 and 9/19 2010

Yesterday was two shots of the Neupogen, one shot to each arm.  They said it was a pretty high dose, thus two separate shots to break it up.  They changed the dressing on where the port was placed, took some blood for CBC check and off I went.  Returning today the blood work shows my growth from 6.4 to 14.3, that in thousands she said, but they need 2 million cells by Tuesday.  Two more shots, more blood work and that was that.  Got some pretty bad headaches today.  The nurse said probably as your sinus cavity is usually empty and its now filling up with cells.  Some people have told her they have taken sinus meds to relieve this pressure.  Apparently tomorrow I will receive two more Nuepogen shots and have to wait until after 5 pm for the Mozobil, which apparently will shot those cells into high grow as they will do the collection on Tuesday morning and don't allow the shots until after 5 the day before.  So, tomorrow evening could be interesting.  Will supply pictures if I happen to have cells oozing out from anywhere!  Otherwise, all is well so far so good.

Friday, September 17, 2010

9/17/2010 Tunneled Central Catheter

Well, the port has been placed, same spot as last time which is nice, no new scar! The placement was not too bad, arriving at 10am and done at 2:30. They basically just put you in a sleep or state of amnesia, no pain till a few hours later around he site. I am now waiting
At the infusion lab to get my first growth shot. Not sure what this will be like but I don't think mrs too bad, will let you all know later.

Saturday, September 11, 2010

Pre Testing Autologous Stem Cell Transplant

I had to undergo some testing to determine if I was eligible for the transplant.  An Echocardiogram to check the heart, a pulmonary test for the lungs and a Pet Scan and lots of blood work.  All were ok and we are moving forward.  I am an awaiting a schedule from the Dr. as to the start of the process which should begin around the week of the 20th of September 2010.  First I will receive a drug called granulocyte colony-stimulating fact (G-CSF) FOR 3-4 days to increase my white blood cells.  These cells contain the cells used in marrow transplantation called hematopoetic cells. These will be the cells collected on the 4th day.  I will have to have a port put in and they will extract the cells via a machine, similar to a kidney dialysis unit if you have ever been on that - it will take 4-5 hours.  I will be admitted to the hospital for 2 nights where they will give chemo to wipe out all bone marrow, the next day the cells will be transplanted back into me and I should be able to go home for the two week growth period.  You actually have a choice of staying in the hospital (where there are so many unknown germs) or going home and just going in each day to have blood work.  After my month last October in the ICU I am choosing to go home. I will update once the procedure is underway.