My Rebirth

The literature likes to talk about this the day that you begin getting your stem cells as beeing a day of rebirth. They even go so far as to give you a Birth Day cupcake.the day started out with a trip down to a surgical suite to get a PIC line installed. Basically this is like a giant IV installed in your upper arm with a small diameter wire that goes all the way up to your heart. This is done with ultrasound to ensure that the PIC line follows the proper branches in the vain network to get to the heart. Of course I caused a bit of trouble here as my veins seemed to be rollers and hard to poke into.
The gurney trips down to the surgical suite for the PIC line was installed reminding me of those movies that you see of the trains winding their way through the markets in South America where sellers are removing their goods just a head of a train. It seems that this part of the hospital was built prior to nurses having computer stations inside the rooms, even though the building is relatively new. So each nurse has a portable computer table but that place out in the hall to enter their daily information. As we come down the hallway with the gurney there is insufficient room to get through with the computer table on either side. So there's a bit of a scramble to get out of the way for us to roll by.

And of course the operating room and my room right opposite ends of the hospital.

Then the doctors was also concerned about the condition of my lungs as a result of the fungal pneumonia earlier this year. So we had another dodge down through the computer tables to get to CIT scan location early in the afternoon.

 After my return they had set up the devices that look somewhat like hot dog warmers to thaw the blood and stem cells. Producing we move forward to injecting some of the stem cells into my system. I was surprised that this was being done by hand and not by some sophisticated machine. The explanation was that the human contact is quicker in the case of emergency or need to stop or speed up the infusion process.

There were six bags of blood product to infuse however they decided to do 2 yesterday and am looking to get four more today.

The reason for splitting it is related to a preservative that they put in blood which can potentially produce some severe allergic  reactions so they want to limit how much of that preservative gets in your body daily. To help fight any allergic reactions and did give me a large dose of Benadryl which pretty much puts you to sleep, enough so that I missed Eileen leaving last night and delayed this report till this AM. So far I'm still feeling well, This is an odd situation where you come into the hospital feeling fairly good and the goal is  make you sick and they try to cure you.

So no big issues yesterday other than of course it was a zero day. Still feeling pretty good and will see how things progress today. Thanks for all your thoughts really appreciate them.

We're in it now and another surprise.

 So as predicted even though we arrived at the hospital at the requested 6:30 it was pretty much 8:00 o clock before things were ironed out with the admissions people. So off to the room on the 10th floor of the Kellogg pavilion at Rush. The promised view of traffic on the Eisenhower is obtained from the group lounge certainly not from my room. The room however is pleasant and acceptable considering it is a hospital.

 Looking to the south the views certainly are not wonderful with a view of one of the mid-50s additions. That gray concrete has really not aged all that well.

 If one leans over and looks hard the left you can see some of the buildings around the museum campus on the lakefront, with the tip of the new wing just visible on the left.

 A surprise relative to this unit and its relationship to the new wing.This had been the location of  this unit prior to the opening of the new wing. The unit was relocated to the 14th floor with an eastward view. From my point of view (as a tourist) that would have been the ideal location. However,there were issues with the ventilation and maintaining positive air pressure in some of the rooms. The simplest fix was to move back to this older location which they did several months ago.  So even new construction sometimes gets it wrong. They are currently revamping the ventilation system in this unit will move back into the new wing.

My BIG surprise was finding out that the peak of the negative effects of the chemo that I got today is not felt immediately. It will be five or six days before I hit bottom with the negative effects of this process. I had expected tonight to the rather uncomfortable but it will be Saturday or Sunday before I'm really feeling lousy. So where I had prepared myself for miserable evening it now seems like it will be a slow descent into this weekend. They promise that after this recovery will begin.

It also seems that the four days of blood collection last week produced so much blood (even though it is low in stem cells) that it will take both tomorrow afternoon and Wednesday morning to put that blood back into my system. Tomorrow they will also be installing what they call a PIC line which is a catheter type arrangement that allows for drawing blood and administering the drugs without the use of a needle. Even though these new needles are fairly painless I really like the idea of avoiding them all together.  The catheter extends all the way from the elbow into the heart.

So tonight is pretty much sit and wait for the effects of chemo to begin, and I'm feeling fine.Can I escape to one of the Taylor St sports bars?

As you might guess there is a great deal of concern about the introduction of outside germs and bacteria in the unit where most of the patients have compromised immune systems. Even to the point of posting this warning in the rooms .One manifestation of this concern  is that flowers will not be accepted but on the other side if you don't like the hospital food you can have visitors bring in whatever you'd like. But somehow I don't think Eileen will be allowed. to bring Quickly up for a visit.

Having moved back to the older space there are a couple of legacy issues in the room. Like I wonder if this is close to my last encounter with a picture tube television. Interesting hoe quickly we have been spoiled by flat screens

And here we go

So here we are at 5 AM getting ready to go to the hospital. Yes you guessed it we are moving ahead with the transplant in spite of the less than desired stem cell collection. Indeed Friday produced only 0.4 million cells. So yesterday the doctor gave me the choice of moving forward recognizing that we didn't have a sufficient number of stem cells for a second transplant if necessary. Or postponing this for a couple of weeks while we attempted to collect more cells.

I guess I was  thinking that we were here at this point and I had pretty much prepared myself mentally. so let's move forward and get this thing over with. A postponement would probably require another chemo cycle to get all the chemicals in proper balance for the transport.

Actually slept pretty well last night. It was Saturday and Sunday nights that were fairly sleepless. I guess once I had made up my mind and committed to moving forward the uncertainty went away. One of the things that does make me wonder is how they continue to tell you that you don't need to go through with this and you can say NO right up until the point when they start injecting you with the chemo drugs. somehow that comment does make me wonder.

Last night was spent packing things and clearing out bills etc. so that it didn't leave Eileen with too much of a burden

So why exactly do they need us at the hospital at 630 in the morning. Somehow I think after checking in there will be a lot of sitting around doing nothing. But I guess after so many years of travel I should be used to that sort of thing.

So depending on how I feel after the administration of the chemo drugs I'll let you know this afternoon or tomorrow how things are progressing.

One disappointment is that my room will not be in the new highly visible portion of the hospital but in an older building. I promised. however thatt I will have a great view of traffic on the Eisenhower Expressway.

Another Try

Another 6+ hours with Frankenstein pumping away at the blood.  I didn't see the numbers for yesterday but they were pretty sure that we'd miss the 4 million target. The feeling yesterday was that we were close enough that we would probably go through with the transplant as planned next Tuesday and worry about enough cells for a second transplant if and when that was an issue.

 We have scheduled a meeting with the Dr. on Monday to see how we move forward.  The uncertainly is the most troubling thing about all this.  Sure would like to have things more definite but its go with the flow!

Harvesting more cells or is the well is going dry?

Another day of taking my blood for a spin.  They really had the machine humming which you can tell by the amount of tingling you feel (caused by a chemical they use to keep the blood flowing).  The tingling is controlled with tums believe it or not.

But in spite of the machine humming the stem cell harvest was way less than we had hoped for, only 0.4 million, so we need to have a good day tomorrow to hit the 4.0 million target.

If we don't hit it I'm not sure what plan B is. If there's anything that really bothers me with this whole process is the uncertainty.  Of course they tell you that each person is different so there is no fixed roadmap, but I sure wish there was.

Besides the uncertainty of tomrrows process we're looking at 3-6 tonight so the drive down will be just great.

Stay tuned tomorrow to see if we hit the target or if we need to develop a plan B.  Its all so much fun.

Another Million but not enough

Well another day of stem cell collection. Even though we achieved a little more than 1 million it is looking like it's going to take all four days to hit the 4 million mark that they want. I'm not really happy that this process is going to take all week but the alternative is surgical removal of bone marrow. So I am willing to put up with is staying in bed for six hours.

As I mentioned yesterday the machine that does this really looks like something that Frankenstein would have invented.

So disappointed that more time is required, pretty sure we'll be doing this again Friday when I had planned to get some loose ends tied up. Thanks to Eileen for putting up with all this, but there's more to come.

A weekend of injections and an explosion that wasn't

We continued with the the neupogen injections every morning over the weekend. The main side effect of this drug is achiness at the large bone joints. The reason for this is that the drug is stimulating the growth of bone marrow and it wants to get out!

On Monday it was a drive downtown to Rush to get an ejection of mozabil. This drug is intended to help mobilize that excess bone marrow into the bloodstream. Instructions for this drug include taking Imodium to help control side effects. I'll let you imagine what those side effects are. In fact the word explosive was used but luckily I didn't have personal experience with that.

Today was devoted to a process called apheresis which is the technical term for the extraction of stem cells. Blood is pumped out of the body and run through a centrifuge to extract the stem cells and is then returned your body. Here's a photo of me happily enjoying the process.

The device itself looks like something that Frankenstein might have invented. So after five hours on the machine I was delighted to learn that they were able to collect 1.4 million cells today.  The target is 4 million or so I know I will becoming more familiar with this device.

So Eileen says I should be telling you about how I feel about all of this. Somehow I had not expected that  I would be lucky enough to be able to complete this process in one day. So coming back for a second and possibly a third day is something I had prepared myself for it and it is not unusual I'm told.

I did spend the day doing some magazine reading and got familiar with the development history of the Boeing 727, as well as the features of the new Crossrail link in London but that's all another story for another time.

So tomorrow will be pretty much a repeat of today and hopefully will be able to collect a few more of those cells. We'll check in with you tomorrow to let you know how the process all went.

First Injection or Happy Valintines Day

One of the comments to the schedule letter was "...it was precise and scientific as we know you...  " or as Eileen sometimes says, actual and factual.  I guess that's the German engineer coming out.  So I'll try to make the posts just a little more human and inject a bit of humor if possible.

Thursday was the first injection of neuprojen.  This js the drug that stimulates growth of bone marrow. The drug is given as an injection in fatty tissue so my belly is the target.  Well given my body mass and the limit they want with each injection lucky me gets 2, one on each side of the stomach.  And as a bonus I'll be taking these at home, once a day over the weekend.  Since I just can't see me giving myself shots, I've asked Eileen to do it.   So not only did I get my first two shots, Eileen got training in how to give them to me over the weekend. The first two shots were given by Eileen as a test to make sure that she had learned the proper procedure. So my Valentine's Day present was getting stuck with a needle twice by my beloved.

A nurse at the injection center did recommend a small Italian restaurant over on Taylor Street (which is an Italian restaurant area near the hospital for those of you not familiar with the Chicago area). We went to it for a Valentine's Day Italian dinner. I've attached a photo of us as well as the Valentine cheesecake that was their special for the day.

Some of you who haven't seen me in a while might be surprised by the length of hair and beard. The beard was described as Civil War style by one of my Facebook friends. Since all the hair will be falling out in about a month I decided to grow as much as possible while I can. There is some debate at the hospital as to the fate of the mustache, if it does go, that will be to first time that many folks have seen me without it, since it dates from Christmas of 1965.

One of the side effects of this drug is tiredness and I fell asleep on the couch almost as soon as we got home. Eileen did sneak this photo which you might get a kick out of. Anyway will see how the side effects of this drug materialize.

Proposed Transplant Schedule

Here is the summary of the transplant schedule I sent out to those that requested it last Wednesday

Several of you have asked about the schedule for the stem cell transplant. I did have a couple of unexpected setbacks in January,  two hospitalizations, one for pneumonia which turned out to be a yeast infection, and therefore didn’t respond to antibiotics and one for dehydration, an after effect of the first.

I began the transplant process last week with a number of pre-transplant tests, however the actual process begins tomorrow. Then I will begin receiving injections of a drug which stimulates the production of blood cells in the bone marrow. The following week I will receive injections of a drug that mobilizes those extra blood cells from the bone into the bloodstream. We will also begin the process of stem cell collection which involves running my blood through a machine to extract the stem cells. This is very similar to being on a kidney dialysis machine and will involve 6 to 7 hours per day. Most patients complete the stem cell collection in two days but this could stretch out for as long as four days. This process is scheduled for February 19 through the 22nd.

The following Tuesday, November 26 I will check in to the hospital for the beginning of the actual transplant process. Tuesday will be devoted to the injection of high dosage chemotherapy. The high dose chemotherapy is toxic to the bone marrow cells, so after it is completed marrow cells need to be returned. The stem cells harvested the previous week will then be injected on Wednesday the 27th. In all the literature they described this as your rebirth day or day zero on their calendar. It is expected that I will be pretty much nonfunctional until day eight. At that point I'm expected to begin to feel some return to normality. Stem cell transplant patients usually remain in the hospital from 3 to 4 weeks so were looking at a go home time anywhere from day 21 to day 28.

I will then continue to be on close monitoring until around day 100 as my immune system will be very comprimised. There is the possibility that if the expected response does not materialize a second transplant will be recommended. Sufficient stem cells are collected initially to allow for this second transplant.

Generally it is expected that it will be six months after the transplant before you return to normal. At this point the doctors are expecting that I will need to take monthly chemo shots to keep the cancer under control. However the expectancy of the control period could be in excess of five years where without the stem cell process life expectancy was less than two.

So I'm bracing myself for this process, not looking forward to it but it's better than the alternative. Eileen has been very supportive and I don't know what I'd do without her.

I hope this answers most of your questions if not let me know and I'll try to provide any additional information you might want to know about.

Thanks for all your thoughts, wishes and cards. Wish me luck and I'll be letting you all know how things are going.

Al

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My First Test Post

Much of the literature on recovering from this proceedure recommends keeping a journal.  So at Eileen's suggestion we decided to go 21st Century and make it a Blog.  Here is the first attempt at posting.