Day 132

Back pain is back this morning, right at the point where the left femur attaches to the hip. On a scale of 1 to 10 it's a 7 to an 8. I'm going to ask them to take a close look at the X-rays this morning or do an MRI to see what's going on. I'm out of pain pills so I'll wait till I see them later. We'll get numbers on yesterday's harvest this afternoon. I think it was probably pretty good. They did a series of checks yesterday because I'm retaining fluid, my weight went from 179 to 187 over the last couple of days and the staff is concerned. Other than that, everything is ok.
We got the astonishing numbers this afternoon. They harvested in excess of 10,000,000 million cells and I have over 14,000,000 million cells in the bank. My white blood cells are at 42CC and we decided to do another day of harvesting. Maybe they can use the additional cells for research. When they do the transplant (rescue) they reinfuse around 4,000,000 million cells. The rest are frozen and stored for more transplants down the road.
They said that the additional weight will go away over the next several days and that the acute back pain was due to the robust infusion of Neupogen and that it to, will pass. A normal level of white blood cells is 3 to 4CC, not 42CC. Anyway it looks like the next step will begin on December 14th with a one hour infusion of Melphalan followed by the transplant on the 15th and then isolation between the hospital and an apartment three blocks from the hospital over the next 12 days. They want me close by in case I need transfusions, etc. If all goes well I'll be on my way home on the 26th of December. Isn't the 26th Kathy Polizzi's birthday? Keep the prayers rolling in, they help.

Day 130

Went to Hackensack for Neupogen shots yesterday and today. I went for a walk yesterday with Melissa and today with Joan. My legs turned to rubber after 1/2 mile. It was a strange sensation, I'll ask about it tomorrow when we go for day three of the harvest. Patty and Kenny are over for a visit and staying for dinner, baked Ziti. Um, um, good.

Day 129

My first day of harvesting was unimpressive. I only got 200,000 stem cells and they want to harvest 12,000,000. But my count went from 3.6G/DL to 12.4G/DL so maybe the second day will be much better. We'll know on Monday. Judging by the amount of bone pain, it should be better. This is the first time I've ever used the words "pain" and "better" in the same sentence. Thanksgiving with Melissa and Joanie was very good. We had an oven stuffer roaster chicken instead of turkey, but Tara brought some turkey for me from Pennsyvania - thank you Tara. My Dad is coming over to see me this afternoon with Eileen and I'm looking forward to the visit. I'm suffering from a little bit of cabin fever but understand why things have to be the way they have to be.

Day 126

My stem cell count still hasn't reached the lofty pinnacle it needs to reach. It came up to 1.1 from .06 yesterday but it needs to go to 2.0 or better in order for them to collect. And there is another complication - Thanksgiving. They're freezing facility won't be open so if they collect tomorrow, there won't be any place to store my precious stem cells. I stand a chance of waiting a day. They told me that when my system produces enough stem cells, it can get a little bit uncomfortable, so, in a way, I hope that my counts are still low. Collection is a process that can take several days. It must be that Dock genetic make-up, we're late bloomers.
But bloom we do. My count went from 1.1 to 3.6 and they did my first day of harvest. I went for 4 hours to get what they needed from day one. They'll get the actual cell count Friday morning and then we'll do day two. Kelly gave us a date of December 8 for the transplant which depends on other factors but at least we have a target date. Oh by the way, so far Edward is the only match as a result of the HLA kits but some of the results that don't match me match each other. There are four kits for which we don't have the results.

Day 124

Today marks the transition to a new phase of treatment. I'll be going through the process of Apheresis, stem cell harvesting. I feel a little bit like the Borg in Star Treck. Anyway, I hope they get a several million cells today and tomorrow. It's an all day process. They hook-up to my catheter and pump my blood through a machine which spins the blood in a centrifuge to separate the stem cells from the rest of the blood. Then they pump the blood back into my artery through the other side of my port. I think the main effect from this should be fatigue. They keep doing it until they get enough cells for several transplants.
We're back at home, no harvesting of stem cells today, my numbers were to low. They gave me two more shots of Neupogen and we'll go back tomorrow morning to see if they can do it then. My stem cells need to be 2.0 or more, they were only 0.6 today. The nurse said the increase needed can happen quickly - we'll see.

Day 121

Joanie thinks she's coming down with a cold, so now I have to wear a mask around her and she's been banned to another bedroom. I hope she's wrong. They gave me my Neupogen in my lower abdomen (stomach) yesterday. It was my choice. I have an antinausea patch on my left arm and I didn't want to remove it and I'm not squemish about where I get the shots. When I had my knee replaced, I gave myself the shots of Cumaden in my abdomen, no big deal. Anyway, Joanie's going to stay in the car while I go in for my shots. I hope I don't have to wait to long.
Well we're back from the shooting gallery. They shot me in the underside of my right arm. There's two more days of shots and then they begin stem cell collection on Monday. I should have many baby stem cells floating around my blood stream by then.

Day 120

Amy emailed us the proofs of her wedding invitations last night. I thought they were great - mostly cause I'm an uncritical Dad but Joanie and Barbara went over them with a fine tooth comb and had some very good suggestions for change - especially Barbara. I thought they looked very artsy, very Amy.
Yesterday went well, they gave me two shots of Neupogen, both administered under my right bicep. It was the first time I had shots under my bicep. We came home and I went for a mile and a half walk, not as much exercise as usual but I'll keep up with the exercise as well as I can. As Melissa says, ya gotta keep moving and I agree. Anyway, so far so good, I haven't had any negative reaction to the Neupogen but it's only the first day of a 5 day regimen.
Melissa is coming up from Virginia for the weekend but she is concerned because she got involved in an emergency at her hospital. She ran into a patient in the hallway on her way to lunch who had collapsed and was throwing up. She took care of him but is concerned because she doesn't know what his diagnosis was and she's concerned that she might have exposed to some nefarious bug. I told her to be alert and see how she feels and not to come if she feels even the slightest bit sick.

Day 117

We went to the hospital yesterday for a new catheter. Dr. Klein took the incorrect catheter out of my chest and replaced it with the correct catheter. I was anestitized for the procedure in Operating Room # 9, same place as the original procedure. The doctor explained that one of her administrative people made a mistake in the selection of the catheter she put in the first time. But she admitted that she didn't check the selection before operating on me. My shoulder is extremely sore because of the two procedures in the same spot. I slept on my back to avoid rolling over on my shoulder. I think of Ellen Cook in the St. Matthews Cancer Support Group when I run into these little hick-ups in my care. She says a prayer that God will guide her to the light and help to ease her burden; I do now too. Thanks Ellen.
Tomorrow I begin Neupogen injections to stimulate stem cell growth in preparation for the transplant procedure a couple of weeks from now. It's going to be a couple of very tough weeks coming up. I'm thankful for all of the support I have around me.

Day 113

It's cold in NJ. I always thought that people on chemo who lost their hair were wearing hats because they didn't want anyone to know they were suddenly without fur. I'm wearing a hat because my old chrome dome is cold.
I had 7 hours worth of chemo today, long infusion of three drugs, antinausea drugs, and hydration. Joanie went to the drugstore afterwards and filled several precriptions I'll need over the next week. The mega infusion of chemo allows us to have no appointments until next Wednesday except for one major goof up at the hospital that has to be remedied on Monday.
The catheter that was installed yesterday was the wrong catheter and is no good for the transplant procedure. So on Monday I'm back in to see the surgeon to screw in the correct catheter. If that can't be done, she'll have to do a new procedure and install a new catheter on my left side. Ugh. Thank goodness for the nurse in the infusion center spotting that it was the wrong catheter as soon as she saw it.
 

Day 112

We went for our consult yesterday with Dr. Rowley, chief of the MM group at Hackensack. In the process of waiting for him they took an ocean of blood, 12 vials. He went over all of my files with us and outlined the process for us. We'll have to make a decision about further treatment - Allogeneic transplant or not after we get the results from the Autologous transplant. He favors a double (tandem) Auto transplant. In the meantime all of my brothers and sisters are doing an HLA swab test kit to see who is the best match for me or if I have multiple matches within the family.

I had surgery this morning to put a port in my chest below my collarbone. It's pretty sore right now but not terrible so I'll grin and bear it with a little help from my friend - Per Ca Set. Over the next two weeks I'll be losing my hair so I went and got all my hair cut off. I thought that that would be a little less sloppy than losing tufts of hair around Barbara's condo. Tomorrow I get a major all day infusion of Chemo and come home to Barbara's to rest. I'll get Neupogen injections sometime late next week.

Day 110

     This was a day chock full of information, a 3 1/2 hour caregiver/patient class with lots of handouts and good interaction between patients, caregivers, and presenters followed by 5 hours of tests in different hospital departments. I never imagined there were so many different ways to test your lungs and heart. I left my pedometer in the X-Ray room, hope I can get it back. I'm sentimentally attached to it.
     There's nothing on the schedule for tomorrow, so we'll go out and do some shopping. They want me to use an electric razor, no blades for fear of bleeding and we'll go to Whole Foods to buy provisions that I'm allowed to eat. I had to eliminate some things I really like. I'll put them on my bucket list for Christmas.
     On Wednesday, I'll meet with a Psyco/Social Worker and have a consult with the transplant team. I need to do a Living Will. On Thursday I get my catheter port put in, we have to arrive at 6AM for a 7AM procedure with Dr. Klein. I'm debating whether or not to take a picture, it looks like a pretty ugly apparatus. On Friday, I begin my mobilization chemo/neupogen (a stem cell growth stimulater) for approximately 2 weeks, then high dose melphalan followed by the transplant and a period of recovery.