Saturday, January 28, 2006

20 Million Cells Delivered!

Monday I went through apherisis. It means processing my blood through a centrifuge and taking out the layer that contains blood stem cells. The goal of the team is to pass the entire five liter volume of my body’s blood through the machine about four times -- or in other words to reach a goal of twenty liters. The goal for cell collection is twelve million. That is enough for two transplants plus a buffer of two million.

The day started early. HUMC is an hour north of home, so I left at six-thirty allowing for rush hour traffic. My appointment was at eight o'clock. After the usual height, weight, blood pressure, temperature and pulse rate checks, I went in to the labs where one of the regular vampires nabbed breakfast snack of two or three tubes. Well, okay: They needed a baseline to know my condition before starting.

When the results came back, it was clear that I was in good shape. My white blood cell count was over sixty two thousand. I was told that I would be finally released from treatment after the transplant when I returned to ten thousand. Sixty two is a very good level.

Then they sent me to the Apherisis room. There was a LOT of paperwork to process: consent forms, treatment plans, prescriptions, doctor's orders, protocols, Health Information Patient Privacy Act - HIPPA release forms, and even more. There was a blizzard of paper moving around that small four bed/apherisis machine procedure room. But since I was first, most of the two nurses’ attention was on me.

Each bed had its own pumping station. The pumping station itself is about the size of small desk. The top part has poles with arms held straight up for holding intravenous bags. Clear plastic bags held plain water (saline solution) and another with blood thinner. They didn't want to risk clogging their fancy machine with my muddy blood. The front of the box was decorated with dials having various markings and the face panel had colored stripes with arrows illustrating the flow pattern. Then clear tubing ran through clamps into the rollers above the stripes and there was a fancy two way in/out connector at the end for me. It looked fairly complicated, but it also looked kind of primitive. It had painted words next to the colored lines telling the user which tubes to put where and some clear warnings too. It made me wonder how much training was required before a person was allowed to operate it – if so much instruction had to be painted on the front of the thing. No matter – by ten o'clock I was hooked up and I could see my blood flowing through the tubing.

Everything was hunky-dorey until we found out my catheter was temperamental. They said it was ‘positional’ and I interrupted the flow every time I moved, or breathed! Every time I took a deep breath the machine lost flow, an alarm sounded and the pumps stopped. So moving and breathing were going to have to be stopped! When the director of Apherisis came to check up on progress, one nurse told her, “Mr. Kirk is ‘positional’.” It came out like a slur on my character. So I worked harder to maintain my special position – lying still, flat on my back with my head as far left as I could manage to hold it, breathing shallow. Fortunately, each bed has a mini television on a very easy to position jointed arm that allowed me to lower the set to eye level. I got an ear plug so as not to disturb others.

The nurses, thank goodness, had no earplug because they had to listen for the alarm then run over every time I forgot my restrictions and took a deep breath. How Could I Be So Stupid?!? OH! MY! GOODNESS!

Actually it was really quite a hassle because it happened thirty or forty times. Fortunately, the two nurses quite understood and took it in stride. It was not just an inconvenience to the nurses. It was an interruption in the flow and did stop progress of the collection. After four hours we had reached just seventy five percent of the volume goal. Only fifteen liters had been processed. By then, it was already two o’clock in the afternoon. Other patients needed the bed and the machine, so I was disconnected. I was, after all, expected to be coming for as long as five days if the collection needed that long. However, I was not looking forward to attempting to lay nearly motionless, keeping my breathing shallow and being able to little else but watch daytime television for even one more day! Too bad – my desires had little to do with anything. We needed to collect at least twelve million blood stem cells for my treatment to proceed.

So after I got disconnected, a few tubes of my blood were sent off to the lab to determine how well I had fared on a physiological level. They showed I had a white blood cell count of forty two thousand. That was nearly a third lower and definitely a lower level of resistance against infection. Still, I felt fine and I started hoping I would manage a full twenty liters on Tuesday. Then they sent me home.

My entire collection (you may be curious to know that the actual volume of blood they took away was just about 220 ml – about half the volume a regular blood donor gives when they donate whole blood) would be sent to the lab for evaluation and an estimate of the progress toward the goal of twelve million blood stem cells would be done overnight. I went home a bit frustrated, but satisfied that the process had begun. Results would be known before we started the next morning.

When I returned the next morning, I had to get weighed, measured and do blood tests to check my starting levels. Then I sat and waited in the lounge for the nurses to arrive. After about twenty minutes, the friendly folks at reception caught my attention and whispered, “You are done! You collected twenty million yesterday. You can go home!”


After all that trouble just to deliver seventy five percent of the volume, the collection came in nearly double the goal! I am really proud that my body was in good enough condition to produce so well. And I did not have to endure another day of that process!

Coming Attractions
The next phase starts the 7th of February. That is the day I go back to HUMC for the transplant. That means one day of chemo -- the death of my bone marrow, then the "Rescue" --the return of five million of my own blood stem cells one day after the chemo. Then we watch my white blood cell counts every day. Somewhere between days six and eight, my counts will drop. They will continue dropping as cells that were adult on the day of chemo finish their normal life span. My counts may approach zero and I will have lower and lower resistance to infection. Without having received the Rescue, my immune system would be permanently disabled. As the numbers are reported, we watch for signs that the transplanted cells have 'engrafted' and are living normal lives. That is signaled by a rise in white blood cell counts. Once I return to at least ten thousand they will send me home. Though risk of infection will be very real, the 'standard of care' has resulted in the best recovery results when the patient is at home.

... and I guess that's all I know about that

Wednesday, January 25, 2006

Chemo Done & Out of the hospital

Quick 'catch up' since I was in the hospital --

The chemo therapy did take all 96 hours. It ended on Friday night about ten-thirty. I was pretty run down by then. Actually from the beginning of the week to the end, I was getting more and more slow and had less and less energy. Between the effects of the drugs and the boredom of not beinng able to do too much besides lay around in bed -- I was getting pretty slow and my energy level was falling down to a pretty low level.

The food was always good at this hospital. They put a menu next to the bed and I could order three times a day. Whatever I ordered came within forty-five minutes. Just like delivery pizza. That was on the menu too -- Pizza! (pepperoni, sausage or plain cheese). The selection was really wide and everything was tasty. I got into kind of a rut ordering lots of vegetables every day. The gave great big portions of spinach, carrots and green beans. So I went for those nearly every lunch and supper.

Besides watching TV, reading, telephone calls and meals -- there was not much to do. I was allowed to take my intravenous 'tree' power cord out of the outlet, let it run on batteries (the same way I get to go to the bathroom) and go for a walk around the building. But I was not allowed to leave the floor. So all I could do was walk around the building past the rooms of all the other patients. It was a big square and it seemed like every room was full. So the nursing team was really busy. They had to check on me at least three times a day. They took my temperature, blood pressure, heart rate and pulse rate. I was not allowed to pee in the toilet since they had to be sure I was processing enough fluids. The chemo will damage kidneys if left in the body for very long. So I had to pee into a container and they had to write down the amount before dumping it out. That is nasty!

As far as I can tell from the blood tests my white and red blood cell counts never fell to the low levels they expected. Who knows why? Here is an explanation of the process that I was able to get from a very experienced nurse coordinator who has supported, according to her own account, over a hundred transplant patients:
  • First of all, the CDEP therapy works in the body to interfere with cells as they divide -- during the cell creation process. Secondly, it does not kill existing adult cells. Blood cells have a normal lifespan from seven to ten days in length (Mark: well, that is not what other documents say, but let's just roll on for now) and those two processes together cause a gap to appear in the patient's immune defenses. As the adult cells die, the number in the body if mapped on a grid would glide downward to zero. The cell creation process, on the same grid would start at zero and climb upwards. In most patients, the upward climbing line is gradual. Depending on how steep the down line is and the starting point of the upward line, there may be a period of time when the line stays at zero. At least, the patient has a period of time during which their immune system is at a low level and recovering at a moderate pace. That is not true for all patients, but it is normal.
Apparently what happened to me was that I never fell to a very low level, or if I did it was for a very short period of time. So my grid would have lines going down to zero, but my line going up was climbing so quickly that it crossed the other line at a very high level. I am not sure that is a clear way of explaining it, but somehow I got an expanation that satisfied me. More than anything, I feel like the chemo therapy was probably effective --even though it did not make my immune system as weak as my oncologist had predicted.

On Saturday morning, I did get released. I was given another dose of anti-nausea medicine intraveneously -- thank goodness! It is such a nasty side-effect of those drugs that they made me feel like I was going to toss my cookies every once in a while. But all I had to do was push that little red button, ask for anti-nausea medicine and Poof! in came the RN with a teensy-teensy clear plastic bag of whatever-t-was. In just a few minutes the feeling was gone. Great Stuff! I also got a prescription for the same thing in tablet form that we filled before we went home. Luckily we did, because I needed it Saturday night at home.

Saturday and Sunday were pretty much a waste. I was stuck in bed most of the time: no energy, a bit nauseous, really low energy -- just taking it slow.

By Monday I was doing better. By Wednesday, I was out and about doing regular things.

Next Blog -- Blood Stem Cell Collection: I set a new land speed record!

Thursday, January 12, 2006

Blood counts refuse to fall - Catheter placed

After two and a half days of CDEP (cyclophosphamide, dexamethasone, etoposide, cisplatin) chemotherapy my blood results show no real changes. So my body is resisting the attack of these powerful drugs. My oncologist came through this morning at about six-thirty. He assured me they would take effect soon enough.

I remain aggravated that my oncologist told me I would be in this hospital four days. First he forgot to arrange my admission. I had to get his partner on call late Sunday night to make a call to the hospital. And I arrived ontime as requested. What he neglected to explain is that the drug therapy requires ninety-six continuous hours.

That makes it IMPOSSIBLE to leave the hospital in four days. As it now stands, I will get disconnected from the fourth twenty-four chemo-cocktail at about ten o’clock in the evening FRIDAY. He said that once the fatigue that will be caused by the therapy has taken effect, I will be evaluated and my ability and the timing of my discharge will be determined. So MAYBE Saturday or Sunday I can go home.

On Tuesday, I got my central venous catheter. It will be used during the harvest and transplant for high volume flows. The tube goes into my chest just below my collar bone. As it comes out, it is bent over and runs under my skin a bit. Then the tail hangs down my side just in front of my right arm. It has two lumens or tails – one red and one blue. They had to do the placement of the catheter now before my platelet count falls -- an expected consequence of the CDEP. Those are the parts of the blood that clot. So they had to do the surgery while I could stop bleeding after the procedure.

A quick review of a mix up in the operating room:
I was taken to the operating room an hour early. They had an open room. My surgeon and the supply clerk were discussing the selection of catheters available. The size specified by my oncologist at HUMC was not there. My surgeon called to HUMC and asked if a smaller one could be used. The response was; delay the remainder of the chemo if necessary to forestall the drop in platelet count – even a month if needed – use the right one or do nothing. My surgeon came to tell me this and I told him that I would be really struggling to make a change of a month in my schedule.

I have already interrupted my work and set a lot of wheels in motion to support my absence now and stretch as long as four months. My mother-in-law is coming to stay with us starting on the twenty-first of January. My mother has plane tickets to stay with me for the month of in/outpatient care at HUMC starting on the fourth of March. Her main working time culminates on the fifteenth of April on tax day. A delay would throw a monkey wrench in a lot of plans. The surgeon said that since I was apparently overhearing part of the conversation, he wanted me to have a clear picture of what information he had so far.

After a few more trips to the supply room, the supply clerk was able to find the correct device and the surgery went ahead full speed.

There was some stiffness and I took pain pills Tuesday night. But my Wednesday morning, I was not in pain just stiff. And today, Thursday, I have just itchiness around the tape they used to hold the bandages. My nurse said she will come and change the dressing today and I hope to get a look at this thing sticking out of my chest.

Monday, January 09, 2006

Starting Chemotherapy

The therapy is working very much as expected. The test results have been showing consistent reduction in the number of cancerous blood plasma cells. Both oncologists want me to go ahead with an autologous blood cell transplant. That is what we will be doing. Here is a quick overview of the process:

Chemotherapy – This week at Robert Wood Johnson (RWJ) Hospital
Create a ‘trampoline’ effect to stress my system and then have it bounce back and overproduce the blood stem cells we need for a self-transplantation. The complication is that this stress will knock out my body's ability to fight infection.

Regenerate – From Saturday to the 23rd of January at home
Use special drugs to accelerate my body's production of new blood stem cells, then 'harvest' those cells and freeze them for use in the third stage. The added benefit of the regeneration process is that the re-growth of my blood stem cells – the core of my immune system – will help protect me as we get ready for the final stage.

Transplant – the 9th of February at the Hackensack University Medical Center (HUMC)
One day of chemotherapy using one of the most well known drugs in the business. It will wipe out my bone marrow and all the cancer. Kill them all. At least we hope that is what it does.
Then return the harvested cells from the freezer and run them through the intravenous lines and into my body. They will warm up and migrate back to the bone marrow and start multiplying and living inside my body just like they did before. The idea is that the mistake the plasma cells made when they became cancerous will not recur. In other words; bring in fresh raw material and let them grow from scratch. The cancer should not reappear.

Right now I am at RWJ for the first chemotherapy. I checked in this morning. This hospital is just 5 minutes from home. Once the pharmacy brings up my cocktail it will take 96 continuous hours to get the chemotherapy done. Friday night, if I am doing well enough, I will go home.

During the week, there will be some more time and I will do what I can to make this blog a bit more informative & maybe even more interesting.

Until then… I wish you all the best.