Starting the Clock

Day 116 (D -22)

Lots of postitive developments today.

Ann's CD34+ cells (stem cells) where at 20 M/uL which is over the target value of 14 M/uL. So she was approved to go through Apheresis. Hopefully the chemo has not damaged her orginal healthy stem cells too much and they will be able to harvest enough of them (target 70 mL or 5 million cells) for a backup just in case the cords don't work out like they should. We are now on the fast track and will spend the next three days in apheresis.

Speaking of the cords, the first one was delivered today. The second will be arriving early tomorrow. With that news we also got firm dates for the first time:

5/16 (Day -16) The cords begin preperation and conditioning for transplant

5/21 (Day -9) Ann goes into the Hospital to begin transplant preconditioning

5/30 (Day 0) Ann's new stem cells are transplanted (Happy Birthday Ann!)

This is starting to feel scary real now.

Apheresis, Vista or Not

Day 115

Today was a bit of a disappointment on a couple of fronts. We started off early this morning by going to MDA for our Apheresis appointment. The plan today started off with a blood draw to see if there were enough CD34+ cells (aka Stem Cells) in Ann's blood that could be harvested. Then we got Ann's CVC replaced with a much larger model that the Apheresis filter could work with without crushing and destroying the blood stem cells. Well that was the plan at least...

What actually happened was a bit different. The blood draw did go off without a hitch early this morning. After which, we scooted over to the Mays Building Infusion Clinic to get Ann's brand new CVC. Initially, Ann wasn't too nervous about this until they started explaining how they were going to get the new line into her. The process involved surgical wire and a vein dilater. After that explanation Ann needed a sedative to get through it.

Pictured to the left is the after effect of the sedative and new CVC. Ann was out like a light and after she recovered she described the sensation of the new CVC line like "being punched [repeatedly] from the inside". The range of motion for her left arm has dropped to almost nothing because she can feel the new CVC line internally if she moves too much.

The good news about this line is that it is supposed to be removed as soon as Apheresis is finished. The bad news is that it will be replaced with a larger one for the transplant.

Unfortunately, we never got into our Apheresis appointment today for two reasons. After getting the new CVC, x-rays had to be taken to confirm the placement of the CVC line. Radiology took longer than they should have getting those results back so we were late for our appointment. Then it turns out that the results from the blood test this morning showed that Ann had not made enough stem cells for the process to even be viable. Of course we would have known that if we had been able to get the x-ray results back on time. Oh bother.

So we will try again tomorrow. Hopefully after another couple of shots of neupogene we will have enough stem cells. The target is 15 m/uL and Ann is currently at 7 M/uL. If not then the whole thing will be called off and MDA will try to do a direct bone marrow tap instead.

We also got told today that they will not be able to give us a definitive date for the transplant until Apheresis is complete. Talk about frustrating.

On a side note I apologize to anyone who has been trying to email us and not getting a timely response, but we have been suffering through some technical difficulties. The OS on my laptop crashed and I was forced to replace it with Windows Vista. I'm not grousing about Vista, far from it, it's actually a pretty cool OS. Just that Gateway has never gotten around to updating some drivers for the M320 series of laptops from XP SP2 to Vista. So I'm gradually getting functionality back, with a few notable and frustrating exceptions.

Lazy day

Day 114

Today the movers came and packed up our house. It 's strange to think that total strangers were going through our things and putting them away in boxes. Chris was a little down today because the reality of our house being sold finally sank in. The new owner takes possession next week. I hope he's as happy there as we were.

On the up side, we get to start over in a new house when I'm better. Let's hope that I've learned from all of my do it yourself mistakes. Let's also hope that it doesn't take me forever like the last house.

I got to spend the day knitting, which was very nice. Chris spent the day trying to fix the computer. He finally gave in to the allure of a microsoft upgrade and downloaded vista. It took three days to download and all day to install. In the end, we ended up losing a few programs that are important to what Chris does for a living. I have some of them on my computer, but they can't be transferred. You win some, you lose some.

The toes were a treat today. The offending toe that got me into this was actually pain free today. The other toe hurt off and on all day. Strange how things work. I have to soak them in a foot bath twice a day and change the dressings. Chris is worried about infection. Me too. I don't want this to be the thing that delays the transplant. I have to be healed before the end of two weeks. Dr. Oliver was coy about how long this should take to heal. She vaguely said two weeks, then changed over to several weeks. I just keep telling myself that it's going to resolve itself in time.

On to the one thing that is really worrying me. I started getting the increased doses of neupogen Friday morning in the hope that I would start producing increased numbers of stem cells. I have to produce a certain amount in order for the transplant team to harvest them. I've had a little bone pain, but nothing compared to what I've had in the past. This worries me since I expected to have a large amount of bone pain this weekend. If I can't make enough stem cells, the doctor wants to bring my mom in. I'm worried, because I don't think that we'll be able to convince her to do it. I'm hoping that they have a plan C.

I have a blood draw tomorrow morning. We won't know anything, since there isn't a follow up scheduled after it. We have appointments Monday and we'll have to hit the ground running with everything scheduled for the day. We'll keep everyone posted as we find things out.

Revenge of the big toe

Day 113

Today was going to be short and sweet with just two appointments ahead of us and nothing else on the horizon. After a long week of appointments stacked on top of each other it would have been nice to have a day to rest and regroup. I was so very wrong. I had to have blood drawn to be sent to one of the cord banks that's holding a cord for me. They need to verify for themselves that the cord does indeed match me. The other cord bank has already verified that the cord that they are holding is suitable for me.


Following the blood draw, I had an appointment with the in house dentist to get a check up. Let me first say that my dentists in Baton Rouge are absolutely amazing and I have been going to Premiere Dental Care for eleven years. I ended up waiting for half an hour before I was shown into a room. I waited one and a half hours in the chair. I am not joking. Chris had to talk me out of walking out. The dental oncologist examined my mouth and teeth and told me exactly what I knew he would. My teeth were fine. He said that the restoration work was exceptional, so kudos to Drs. Toi and Cyndi. He proceeded to tell me what I needed to do during my CBT and then he did something that shocked me. He pulled out a box of junior mints and told me that I should eat these during my confinement to help with my bad breath--After a transplant, you either smell like creamed corn or olives. It oozes out of your skin and manifests in your breath. Fun. This is the first time that a dentist has prescribed candy to me.

We had just enough time to drive across town to make my podiatry appointment. I was just going in to have my big toe looked at with strict orders that the podiatrist was only supposed to do the least invasive procedure to fix the problem. Didn't happen. After consulting with Dr. Alousi, Dr. Oliver decided that I needed to have surgery on both big toes and it was going to happen today. To clarify things, I've had problems with ingrown toenails since I was six. I've had surgery to correct the problem on both toes before. It did fix the problem on one side of each toe. Dr. Oliver performed the same surgery today. It is the most disgusting thing that I can imagine watching. First the doctor uses a scalpel to score the length of the nail, then they use a chisel to sever the nail from the toe. After this, they pull the fragment out and apply phenol to the area where the toe was originally growing. This is to cauterize the area and kill the nail. Yummy. So here I sit with both toes bandaged to within an inch of looking like Flintstone feet.

After all of this, we had to go to the drugstore to pick up supplies. On the way back to the apartment, I was eating a candy bar and just happened to look at it and saw that the nougat was a strange green color. I couldn't decide on whether I should tell Chris and started freaking out because the candy bar was rancid and I'd already eaten part of it. Before I completely lost it, I looked at the label and saw a picture of Shrek. It turns out that the candy bar was part of a special promotion and the nougat was green on purpose. Silly me. Chris was laughing so hard he had trouble breathing when I told him what I did.


Finally, our friend Anand flew in from Los Angeles for a visit. It was really nice to see him and it gave us a chance to catch up on what everyone was up to.

Crossing the Rubicon

Day 112

In 49 BC Julius Caesar lead his legions across the Rubicon river which defined the boarder between Gaul and the Roman Republic. An action which was illegal under Roman law and could have cost Caesar everything and destroyed the Republic along with him. However, his risky course of action would ultimately change the course of history.

The phrase "crossing the Rubicon" has survived to this day and describes just the sort of calculated risk that Caesar undertook more than 2000 years ago. We might understand it better by thinking of it as the "point of no return". Which is exactly what Ann and I passed through today.


Today Ann singed her paper work to begin the Cord Blood Transplant. There is no more time for doubts and second guessing now. The process has started to move forward with a frightening pace and we are committed.

First up today we got the results of some of the tests Ann took the other day. Her latest Bone Marrow Aspiration come back with 1% blast cells. Thats down from the 3% that where in her last BMA. PCR and FISH tests have not been completed on this one, but our leukemia Doctor believes that because the volume of blast cells is so low and well in the normal range, so they are probably not leukemic. We will get those portions of the tests later.

However at this point it hardly matters. The conditioning regime pre-transplant is going to be Fludarabine, Melphaian, Rabbit ATG and Thiotepa. Fludarabine is derived from phosphonic acid, while Melphalan is derived from Phosgene! I worked a couple of jobs at chem plants in BR that processed Phosgene, and have talked to enough people exposed to it for it to be one of those chemicals that just scares me silly. To put it in perspective, Phosgene is closely related to the same infamous Mustard Gas that was used in WWI!

Rabbit ATG is a gene therapy drug composed of rabbit antibodies that have been "trained" to kill off human immune cells. Finally is the one we got the biggest warning about, Thiotepa. Thiotepa is another phosphonic acid derivative, but it will leach out of the skin after infusion and cause burns. So Ann has been advised to take multiple showers during the day after the infusion of it begins. All of these drugs will take all of her existing bone marrow and any remaining cancer cells and wipe them out completely.

The results of the CAT scan she took yesterday shows no sign of sinusitis or tumor cells in her head or neck. Thats just another confirmation that it looks like the leukemia has not been able to move into her central nervous system. Also Ann's Echocardiogram continues to show that her heart is normal and healthy. I'm unbelievably grateful for both of these results going into the transplant.

Last but not least on the lineup of today's test results was the CBC. Ann's WBC count has stabilized at 5.3 K/uL which is right in the middle of the normal range. Her platelets are at 174 K/uL (low end of normal). However her RBC count is still low at 3.05 M/uL (normal 4.00 - 5.50 M/uL), and the Hemoglobin (9.6 G/dL) and Hematocrit (27%) numbers are low along with it. I have been reassured that this is not unusual and it will take a long time for the RBC numbers to recover.

So after covering all those results I would like to introduce everyone to Ann's transplant Doctor. His name is Dr. Alousi and he is a very soft spoken and laid back man. His mannerisms immediately put you at ease, which is high praise considering the anxiety that most patients and caregivers must feel about transplants. He was very animated today and seemed genuinely excited to have all the papers and consents signed so that he could begin treating Ann.

Our next step is Apheresis, and a backup stem cell harvest from Ann in case something goes wrong with the cord stem cells. Although Dr. Alousi did tell us that because of the amount of chemo that Ann has gone through the chances of being able to harvest her stem cells for a backup is 50-50. We may have to call her Mother in Slidell and ask her to donate considering she has half of the 10 HLA proteins that Ann's cells have. Half isn't great, but it is better than nothing if Ann's cells won't cooperate.

I know everyone wants to know exactly when the transplant will be. However, MDA still has to coordinate a few more things before they can tell us. We expect that we will be getting a call this afternoon or tomorrow letting us know exactly when.

More updates later if we need to.

Another long day

Day 111

I'm so tired that I can't see straight, so please forgive me if I start to ramble. I had a CT scan first thing this morning. Immediately following that I had an echocardiogram and right after that I had a pulmonary test. I was exhausted after that one, but the technician seemed very pleased with my results. That's good enough for me.

My big toe continues to cause problems for everyone. That's a sentence I thought I'd never write. MDA doesn't have a podiatrist on staff, but they do have a partnership with a clinic in Houston. My transplant doctor's PA called me to let me know that I needed to call the clinic and get an appointment by Friday. She'd already called them to let them know what was going on. Now I'm waiting for that doctor's office to call me back to let me know if I have an appointment. Did that make sense?

Our house is getting packed up and put into storage this week. It's odd to think that total strangers will be touching our things and packing them away. If all goes well, the sale of the house will be finalized next week. Chris and I are a bit sad since this was our first house and we hadn't finished renovating it. We'd only just finished furnishing it when I got diagnosed. It's strange how things work.

Tomorrow is going to be another extremely long day. I have to meet with both of my primary doctors in addition to everything else. I'll get the results of my bone marrow aspiration and maybe my biopsy. We're hoping for no blasts.

I'm off to bed to catch up on some sleep. Good night, everyone.

Day 110

Today was tremendously busy. We started the day out meeting with the stem cell clinic's social worker to sign consent forms. I can't even remember the number of times I signed my name or initialed next to something. The one interesting thing I remember is signing a consent so that the NMDP could have a sample of my blood. It's a very elite club to be joining. They're tracking blood cancers. They get left-over marrow from biopsies, too. Ooky.

I got to see my transplant doctor next. I need to make an aside before I talk about the visit. When I woke up this morning, the big toe on my left foot was a little red and hurt when touched or any pressure was put on it. I have a long and varied history with ingrown toenails. It's gross, I know. I've had two surgeries to help correct it and was planning on scheduling another before I was diagnosed. I told Dr. Alousi's physician's assistant about it and she insisted that Dr. Alousi see it. They're worried about an infection, so I now have an appointment with a podiatrist. Chris and I joked that my downfall would be something as silly as an ingrown toenail. We shouldn't have invited trouble. I have to have this cleared up before I can move forward.
Dr. Alousi said that the CBT would probably take place in as short as two weeks.

Two weeks is a scary proposition when you think of it. I was a little shocked when he said it. I'll start mega doses of neupogen on Friday. It will be three times the dosage that I normally get injected with. On Monday, I'll be getting a new port placed in my chest so that they can harvest my white blood cells to use in case I don't engraft properly.

I met my research nurse during this visit, as well. She gave me a time table for the chemo that they'll be using for conditioning. They are using some very scary chemicals. Chris thought that I'd be doing total body irradiation. I'm glad that I'm doing chemo. The radiation wreaks havoc on your brain. No thanks. I'm already suffering from learning disabilities from the chemo regimen. It's funny, but in the beginning when I worried about this side effect possibly affecting me, my friend Joe said, "You're smart enough." It still makes me laugh. I'll do seven days of chemo followed by two days of rest and then I get my new cells. I still can't believe it.

I had an EKG after this. We had to wait one hour and fifteen minutes for this appointment. The EKG took less than five minutes. This put me off for the rest of the day. The next appointment was an interview to discuss my new port placement. When they put in my original port, I was so high from all of the medication that they gave me, I don't even remember it. The description of the new procedure made me a little queasy. They're going to pull out my old port and insert a guide wire to find the big vein leading into my heart in order to place the new port. I was told to let the technician know if this hurt. I can't wait. I'm debating on whether or not to eat before this one, because I sincerely do not want to throw up on myself during this one.

The last appointment was not my favorite. I knew that I was on the board for a bone marrow aspiration. Turns out that I was also down for a bone biopsy too. This involves punching out a piece of my hip bone to analyze. The technician that performed both procedures was a very petite woman. She might have weighed one hundred pounds. When you're having this procedure done, you want a guy who looks like they live at the gym when they aren't at work. I had that guy the first time I had an aspiration and biopsy. No pain. It was wonderful. I almost asked for the procedure to stop three separate times. It was excruciating. I'm not generally a baby when it comes to pain. She had to go in a three different angles because she kept straying out of the area that had been anesthetized. Imagine an enormous punch going into your hip bone below an area that hasn't been hit with lidocaine. My bum hurts. Chris reminded me that I still had darvon and I am grateful.

We got back to the apartment after 6pm. We have a full day tomorrow, as well. I can't even remember what we're doing. It's like riding the tea cup rides. At least we're in the home stretch.