Tuesday, July 31, 2007

Disappointment

Day +62 (Day 200)

As Chris posted earlier, we're working on 2.5 hours of sleep. This isn't entirely true, I managed to get another hour while receiving treatment. I missed physical therapy, but I couldn't really see me getting into the groove while fantasizing about sleep.

I've been thinking a lot about cancer lately, and I know this might sound strange coming from me. I have cancer, of course it should be on my mind. That's not really how I operate, though. I haven't honestly considered myself as someone with cancer since I went into remission. I honestly know that might sound strange. When someone asked me what flavor my cancer was not too long ago, I had to think. My immediate thought was, I don't have cancer.

I like to think that I'm recovering from cancer.

Enough of that. Chris and I have been going to clinic for quite some time now, and we've made quite a few friends. It's a very small community and you tend to know what's going on with everyone else. This also means that they know what's going on with you. After my relapse scare, I've gotten quite a few visitors while in clinic. We all pull for one another and nothing is scarier than a relapse. There's always the worry that it could be you.

I've mentioned a couple from Slidell that we befriended not too long ago. They're a very sweet couple and we enjoy speaking to them immensely. Last week, his blood work also showed blasts, so we were in the same boat. We had the same kind of transplant, and naively, I thought that we'd coast through together. He had his bone marrow biopsy yesterday, so we were on tenterhooks waiting for the news. We checked in on them on our way out, and he's relapsed. I felt like someone had punched me in the chest. He's such a vibrant person that it's hard to look at him and think that he has to do this all over again. His transplant team is putting a plan together for him which includes his leukemia doctor. We're absolutely devastated about this. We're supposed to have dinner this weekend, and I really hope he feels up to it. Please say a prayer for our friends in hopes that he can be cured.

We're playing it low key tonight. No plans for the next two days, except for my in house infusions. I'm sure we'll turn in soon. Let's hope my newest sleeping habit won't keep Chris up, again. I'll let Chris blog about it tomorrow. I wouldn't have believed him when he told me, but he recorded it on his phone and showed me the day before yesterday. Very weird, but apparently, there is a clinical name for it. With that cliffhanger, I'll bid you all a good night.

2.5 Hours of Sleep (Late Post)

Day +61 (D 199)

Sorry for the late post. This should have been posted last night, instead of this morning.


Starting off with Ann's counts for the day (7/30/07)...

WBC 10.4 K/uL
RBC 3.14 K/uL
HGB 10.6 G/DL
PLT 294 K/uL
ANC 6.24 K/uL

That looks pretty good and the RBC and HGB numbers are a definite improvement. However, RBC production doesn't seem to be extremely consistent so I wouldn't be surprised if there is a small drop in those numbers.

The real news of the day was Ann's temperature. For the last two days her temperature has been erratic. At times it's normal and then it will jump up into the 99F range. When this happens I usually measure her will a second thermometer, in case of a false reading and then follow the measurement up in 15 minutes. On previous occasions her temperature has always dropped back down to normal.

However, last night was the exception. After getting out of clinic and throughout the day Ann's temperature showed a constant increasing tend. Around 9PM last night it hit 100F and based on the rate of increase I figured that she would be over the threshold temperature of 101.5F that MDA uses to define a fever, soon.

When a patient crosses the 101.5F line you are supposed to take them MDA's emergency center. Now Ann wasn't over that limit yesterday, but we where playing it safe. So after sitting in the EC waiting room for an hour to be triaged, wouldn't you know that Ann's temperature registered 98.7F. Of course once your in the EC and have been triaged there is no turning back. So despite the normal temperature reading we had to sit and wait for what was coming to us.

Which included blood tests, urine tests and lots and lots of waiting. It's a lot like getting stuck in the gear teeth of a large machine. Most of the staffs effort is focused on people who have real emergencies and since you don't they tend to side line you to deal with later. Unfortunately that "later" also includes things like getting your discharge papers so you can exit the EC properly.

Long and short of the story is that of all the tests they did all came back negative. The likely explanation for the fluctuations in Ann's temperature is probably hormonal and not infection. It also took the better part of 6 hours to get out of the EC, so both of us are operating on 2.5 hours of sleep so we could make our clinic appointments in the morning.

I have apologized to Ann about 50 times already for insisting on getting her temperature checked out. I had no idea it would turn into the ordeal that it ultimately became. No good deed goes un-punished I suppose.

The nurses have jokingly accused me of being overprotective and fretful when it comes to Ann. I don't think thats the case. This is what a Husband is supposed to do and I love her.

Friday, July 27, 2007

Relief

Update:

I just got off the phone with my transplant doctor and he had the preliminary results of my bone marrow biopsy. It showed 3% blasts in my marrow. A normal healthy person will show between 0%-5% blasts in their marrow at any given time. He told me not to worry since everything else looked normal. Great news! I haven't relapsed.

Chris is slowly winding down. Poor guy has been so worried about me all week, I'm sure this news was a pleasant shock to the system. We can enjoy our weekend off from clinic with clear minds. No more fear induced paralysis.

Now, I'm off to make a few phone calls to spread the good news. :)

Support

I'm sitting next to Chris, trying to offer him comfort. I'm afraid that I'm not doing a very good job. If you've read his post (located below), you know that I had a shady result in my blood tests. I'm showing 3% blasts in my blood work and according to my nurses and transplant team, it's not unusual to have 0-5% blasts in your blood. Sometimes, it just happens.

Chris is ready to climb the walls and eat the drywall, he's so tense. He's really worried about what my bone marrow biopsy will reveal today. The APN put a rush on the order, so we might know something in 4 to 5 hours. They've promised to call us when they know something. These will only be preliminary results. The full diagnostic will be available sometime next week.

As for me, I'm not going to worry about it until I have to. I feel well. My appetite is good and I'm not exhibiting any of the signs that I did when I was initially diagnosed. I've been warned by my doctor that it could be nothing, but we wouldn't know until the BMA came through. He also said that he wasn't sure that it was a sign of a relapse, since my other numbers were coming up. Either way, I'm going to sit tight until we hear something definitive.

Over the last seven months, I've been poked and prodded more than I care to think about. This is just another little bump in the road. I've been warned of pneumonia, CMV, CMV pneumonia, herpes, staph infection, CVC infection, bacterial infection of various sorts and body parts, and fungal infection. The boogey man is microscopic and there is very little that I can do about it, other than take it one day at a time.

Faith and determination have taken me a long way and I'm not about to give up now just because of this.

Helplessness

Day +58 (D 196)

I am sitting in the BMA clinic on the 7th floor at MDA. Today I am very nearly heartbroken and feel helpless.

Our CBCs from clinic today confirmed that Ann needed to get a bone marrow aspiration so that the presence of leukemic cells could be confirmed or ruled out.

The blast cells measured in Ann's peripheral blood rose from 2% to 3%. While this is not a terribly large increase it does beg the question as to why the little bastards are there at all.

This is in spite of Ann's platelets and red blood cells continuing to rise.

The possible scenarios that I outlined in a previous post that could have lead to the presence of blast cells have all been ruled out and discounted by the transplant specialists.

They believe there are only two conditions under which blast cells would be present in any volume in peripheral blood. The first is due to marrow regeneration and the second is the presence of leukemia.

MDA says that they will try to get the preliminary results of the marrow aspiration to us by the end of the day. The doctor did note that a similar thing happened to another patient and resolved itself ...

What does this mean? Is it a relapse or a just a minor complication?

Tuesday, July 24, 2007

Widespread Panic

Day +55 (D 193)

Ann's CBCs for today...

WBC 9.80 K/uL (4.0 - 11.0)
RBC 2.96 K/uL (4.0 - 5.0)
HGB 9.80 G/dL (12.0 - 16.0)
PLT 264.0 K/uL (140 - 440)

Lymphocyte Absolute Count 0.98 K/uL (1.0 - 4.80)
Neutrophil Absolute Count 8.23 K/uL (1.7 - 7.30)
Monocyte Absolute Count 0.39 K/uL (0.08 -0.70)

Neutrophil Percent 84.0% (42.0 - 66.0)
Lymphocyte Percent 10.0% (24.0 - 44.0)
Blast Percent 2.0% (0.0 - 0.0)

...

Panic: Defined as the primal urge to run in fear, or an overwhelming feeling of fear and anxiety. Also as sudden mass fear and anxiety over unanticipated events. Today I feel like the last definition is the most accurate in the context to today's CBC.

The results of Ann's CBC certainly fall into the category of "unanticipated events" mainly due to the presence of blast cells. Blast cells have been present in Ann's blood three separate times. First when we came to MDA, 193 days ago when there where so many of them in her blood that she was bordering on a stroke. Second after she was in remission and Neupogen was being used to regrow her marrow after chemo. Then finally today.

The problem with the blasts on today's CBC is that today is not 192 days ago and Ann has not been on Neupogen for almost a month. That left a couple of uncomfortable possibilities in my mind when the transplant APN handed us her results. The first was a clinical mistake...possible but not likely. Maybe those 2 cells out of a 100 counted where the baby stem cells reacting to something, or maybe it was a relapse.

It was the last possibility that sent me over the edge today. I should note that when I say "me" I mean me and not "me and Ann". Ann is quite the cool customer and very little fazes her. Fine I freely admit to being a worry wart. That is what Engineers are supposed to do, worry and obsess over the small details that foul up otherwise well laid out designs. So 2% blast cells looked like the end of the world to me around lunch time today. By contrast Ann wasn't bothered and actually took a nice big nap.

It wasn't until a good friend pointed out a few things that I had not considered that climbed down off the ceiling. The presence of blast cells in the blood can be caused by strenuous exercise. Ann has been doing plenty of that at the PT gym as of late. On a scale of 1 to 10 she rates her 2 hour morning works, out at an 8. She has begun to sweat so much that the PT's are starting to offer her a towel when she starts on the nautilus.

Blast cells can also be caused when your immune system reacts to a bug. In line with this over the last three days Ann has had some GI issues that have already bee ruled out as being related to GvHD. So they are likely caused by a bug that she picked up. This would explain general rise in WBCs over the last couple of days and the current higher than normal level of Neutrophils in Ann's blood. Neutrophils are the grunts of the human immune system, so an increased level of them and the GI issues tends to support the presence of a bug.

Our next clinic visit is Friday so we will find out if this is the case. If it is then Ann will probably get put on antibiotics (Levaquin is the one of choice) for a week. That is, if Ann's new immune system doesn't handle the problem all by itself before then.

Finally our friend pointed out that the "r" word would be highly unlikely because we just had a positive BMB that showed 100% engraftment of both cords on day +30. Recurrent leukemia would have to take hold in her marrow before overflowing blasts out into the blood.

So my panic has subsided and my emotion meter is back to the "cautiously optimistic" setting it was at before. Also Ann did compromise with me about her reation some what. She curled up on the couch where I could watch her sleeping.

Monday, July 23, 2007

Clinic Video

Day +54 (D 192)

Friday, July 20, 2007

49 Days Left

Day +51 (D 189)

Hello everyone today was Ann's clinic day so without further ado here are her counts for the day...

WBC 8.20 K/uL (4.0 - 11.0)
ANC 5.81 K/uL (1.7 - 7.3)
RBC 2.97 K/uL (4.0 - 5.0)
HGB 9.60 G/dL (12.0 - 16.0)
PLT 210.0 K/uL (140 - 440)

As you can see the WBC and ANC counts are a bit higher than on Tuesday. I had a bit of anxiety over the WBC count being a bit higher, but the transplant team assured me that there are often major variations in healthy people so not to worry. Ann's baby stem cells are still getting the bugs out of the red blood cell production line, as her HGB and RBC numbers are up over our last clinic visit. Again the transplant team said thats normal and the red blood cell portion of her blood work should begin to trend more positive. Finally Ann's baby stem cells have apparently decided that she needs platelets and lots of them. No complaints from Ann as the bruises from her Neupogen and Lupren injections have finally faded to almost nothing now.

Ann continues to do well at Physical Therapy. So much so that she has been pushing the therapists to increase the intensity of her work outs. They were skeptical at first but, after seeing Ann's commitment and energy they were convinced. Ann's PT workouts have now expanded to the point at which it consumes all the time we would have normally spent in the transfusion unit. For example the 1000ml bag of magnesium she gets infused over three hours now actually ends before her work out is over. The poor therapists have to stop her IV pump (which goes off like a car alarm when it's program is finished) and flush her line.

Ann keeps joking that she is starting to work on her "trophy wife" body. I can't complain but I honestly don't care. Having her alive and happy is more important to me because I love so very deeply.

In non MDA related news we have discovered an interesting fact about Houston. This time its the cable company...Comcast. When we moved to our new apartment we where really excited that it had basic cable already. Well that initial excitement was short lived after looking over what Comcast provides on it s basic menu. 6 Spanish language channels, 4 channels of Houston public access, the big three networks, PBS, A & E and the Food network.

The logic of Comcast's offerings escapes us. We both love the Food Network and can watch hours of Alton Brown without getting bored but, after your fifteenth Rachel Ray rerun your ready to scoop your eyes out with a spoon (Yum-o!). We miss BBC America desperately, if for no other reasons than Graham Norton, Eddie Izzard and Gordon Ramsay.

Here is to 49 Days left...Bon nuit tout le monde.

Tuesday, July 17, 2007

My turn

Day +48 (Day 186)

Today was refreshingly short. My doctor saw me today, since he was going on vacation and wouldn't be in for Friday. He had nothing new to report and neither did I. No rashes, no nausea, no other fun and noisy bodily functions. My numbers continue to be good, but my red blood cell count did fall. We expected this and so did the advance practice nurse. Without further ado, here they are:

Red Blood Cells 2.86 (4.00-5.50)
Hemoglobin 9.3 (12.0-16.0)
White Blood Cells 7.4 (4.0-11.0)
Platelets 163 (140-440)
Absolute Neutrophil Count 5.55 (1.70-7.30)

I had a slight reaction to some IV medicine today. I get it every two weeks to help prevent pneumonia. It's never bothered me before, but today, it gave me an off and on stomach ache which made me late for physical therapy. I had to cram in two hours of exercise into forty-five minutes. Not fun. I must admit that I do feel better with all of the exercising. The only thing that I have to complain about is that I continue to retain fluid. The doctor thinks that I'm also putting on weight. He was a little embarrassed about introducing the topic. The weight just settles around my middle, which is frustrating. Clothes don't fit and I constantly feel uncomfortable. C'est la vie.

No more clinic visits until Friday. It'll be nice to get to sleep until 8. I can't believe I almost forgot. They reduced the amount of magnesium I'm getting intravenously. Slowly but surely, I'm being weaned off. I can't wait to be free of IV bags and the CVC. That's it for tonight. Sleep tight, everyone.

On a personal note: Dr. Cyndi, I got to see the pictures. The girls are so beautiful. I can't believe how fast they're growing up. Thanks for sending them. :)

Monday, July 16, 2007

Platelets Normal and Making Red Blood Cells

Day +47 (D 185)

Wow, did we get some encouraging news today...

WBC 7.20 K/uL (4.0 - 11.0)
ANC 5.45 K/uL (1.7 - 7.3)
RBC 2.94 K/uL (4.0 - 5.0)
HGB 9.40 G/dL (12.0 - 16.0)
PLT 149.0 K/uL (140 - 440)

...thats right Ann made Red Blood Cells for the first time today and her Platelets reached normal for the first time since the transplant! The change in the RBCs may not be much compared to last Friday, but it is a definite improvement. It seems that all of Ann's virtual juice boxes, crayons and cookies have encouraged the baby stem cells to do what they are supposed to be doing. In fact this is really the first time Ann has made her own RBCs since she was diagnosed over half a year ago.

There is some more good news from Physical Therapy as well. Because Ann is quite the model patient, the Physical Therapists have been adding exercises for her to do. What started out as a half hour workout has quadrupled. While Ann is on the nautilus, several of the patients came over today and told her how much they admired the effort she was putting out.

Ann has been roughing out a theory that maybe the growth of the baby stem cells is encouraged by exercise. Which would increases circulation, and carry more oxygen to the marrow and in turn encourage the production of more healthy cells. I don't think any studies have been done on the effect of exercise on BMT patients, but it certainly sounds good. Of course the down side to being a physical therapy over-achiever is the sore muscles the next day. Thats a small price to pay though.

We are not out of the woods yet, but now with all the good news we are starting to think about the future as a bit more than a abstract concept. We are beginning to dare to think about the trips we have promised to take to visit family and friends, both old and new. Ann wants to go back to Negril, Jamaica and visit the place we got married again. I'm not sure that the doctors here at MDA would sanction a trip to the Caribbean but we will see. However, right now we are planning trips to the East and West Coast.

In the meantime Ann is really looking forward to being given the all-clear from MDA to leave. After not being able to drive for 6 months she is excited about getting her independence back. She is planning on making the drive back to Baton Rouge herself.

Friday, July 13, 2007

Platelets Up , Tacro Down

Day +44 (D 182)

I have been trying to figure out a better way to post Ann's blood counts from the CBCs (Complete Blood Counts) we get on clinic days. After doing this for officially just over half a year now, it is still awkward to construct a sentence that covers the counts, or jam them into an existing one. So to fix the problem I'm just going to table them, like so for today's counts...

WBC 4.80 K/uL (4.0 - 11.0)
ANC 3.43 K/uL (1.7 - 7.3)
RBC 2.74 K/uL (4.0 - 5.0)
HGB 8.81 G/dL (12.0 - 16.0)
PLT 86.0 K/uL (140 - 440)

The left numbers are Ann's current counts and the numbers on the right are the normal range. Now it's much easier to point out what is going on. Ann's WBC and ANC counts are in the normal range, so she continues to be free of Neupogen injections. The RBC and Hemoglobin fronts are still lagging, and probably will for the next two months or so. However, the rate at which her HGB numbers decline has begun to slow down. The star of today's numbers however has got to be the platelets. Tuesday they were at 33K, then on Friday they jumped to 61K and today they are at 86K which is a little over half way to normal.

To put it in the words of Ann's Doctor "We hit a triple": No transplant problems, Good engraftment and no GvHD so far. He seems to be cautiously positive about Ann's results so far, but he did note that we have a long way still to go. Our next sign post will be another Bone Marrow Biopsy at day +90. I'm already biting my nails.

One change that has been made is that Ann's dose of Tacrolimus (or Prograf)the main medicine that is being used to prevent GvHD has been reduced from 1 mg twice a day to 0.5 mg twice a day. The Pharm D that made the change said that this is a pretty routine shift due to tacro building up in people's systems pretty easily. They don't expect the reduction to invite the onset of GvHD.

In other news we have officially finished the move from one apartment to the other and it feels great to finally have some time off. Finished cleaning the old apartment and dropped off the keys just before setting down to type this. The rest of the weekend will be spent unpacking everything and finding places for everything to go.

One more piece of MDA related news today...it seems that M. D. Anderson has been rated the number one cancer treatment institution in the country by U.S. News and World Report. I never ever thought I would have a reason to be happy about being in Texas!

Tuesday, July 10, 2007

Debacle and Delight

Day +41 (Day 179)

I'll keep the debacle portion of this post as short as I can. We were scheduled to move into our new apartment Saturday, after the vents and ducts had been cleaned. The cleaning company was supposed to come out between 12pm and 2pm. Where have I heard that promise before? While we waited, Dixie, Chris and I finished packing up the better part of our belongings and waited. And waited. After several calls from Chris, the cleaning crew showed up a little after 5pm. I wonder if they were daylighting for the cable company. There was dust and mold on the outside of the vents in the new apartment, but we had no idea of the extent of it. The cleaners pulled the vents off and saw that the ducts were completely choked and the inside of the vents had at least three inches of dust and mold piled up on them. They examined the air handler and found that it was choked with mold and was a lost cause. Surprisingly, they just came out and said that they couldn't clean it.

Needless to say, they pronounced it unfit for me to live in. So, we went into high gear to find another apartment. I found one in the first complex that we had originally scheduled to move into and reserved it until we heard back from our landlords.

As luck would have it, our would be landlords were horrified at the condition of the apartment they were going to rent us and found us another one available Monday. Dixie wasn't able to stay and help move, but we had a really great visit. :) The new apartment is in the same complex that we currently live in and it is thankfully on the first floor. Poor Chris had to start hauling our things over to the new apartment after a long day at clinic and in the excruciating heat of Houston. You guys in Baton Rouge know what I'm talking about.

It was far too hot for him to haul everything himself, so he took a break after he had moved about two-thirds of it. We picked up a few more things today, and will finish moving tomorrow. We hope.

Now for the delight part.

My blood work showed that my platelets are up to 61,000. I'm doing it on my own so far. Yippee! That's not really the good news, though. My Chimerism test results came back today. According to it, I don't exist anymore. None of my marrow showed up. I'm 77% one umbilical cord and 23% the other. Now we're just waiting for one of the cords to completely take over and my blood type to shift over to B positive. Hooray!!! No more of my stinky cells making cancer.

I'm not out of the woods yet. I have another biopsy in 19 days and that could show something else entirely. We're just enjoying this good news right now. Chris and I were debating about the babies that the cords came from. Something tells me that they're little bad asses and I couldn't be more grateful.

I got a red blood cell transfusion yesterday and I feel great. They've added activities to my physical therapy regime since I'm doing well. Chris took it upon himself to increase my weights when no one was looking. Since I was able to do the heavier weights, the PT's decided to up the ante. Chris was quite pleased with himself. As for me, I'm sore. I do plan on increasing work outs in order to get ready for Mrs. Olympian World competitions. Beefcake! I figure I can draw in a six pack with eye-liner and fake the triceps part.

Two days off and a lot of unpacking to do. My next clinic day is Friday, so we'll see what the numbers look like then.

Monday, July 9, 2007

Friday, July 6, 2007

I Made Platelets!

Day +36 (Day 174)

Dixie has come to save the day! I'm out of commission and she's here to help with the move tomorrow. Thankfully.

Today, we anticipated that I'd be getting blood products since I've been so short of breath over the last two days. When we got the report of my blood work, we were pleasantly surprised to see that my platelets had jumped from 20,000 on Tuesday to 33,000 today. I made my own platelets!

My hemoglobin was another story. I was at a 9.0 on Tuesday and a 8.2 today. My doctor likes to wait until I'm at 8.0 or below before I get red blood cells. Since I'm off for the next two days, I normally would have gotten a few units to keep me going until Monday. MDAnderson is experiencing a blood shortage, so my team decided to hold off. No blood for me. If I start experiencing side effects from low hemoglobin, I'm supposed to go to the emergency room. Chris is watching me like a hawk.

I got a good report, otherwise. I'm swimming through it just fine. We're just waiting for the GVHD to take effect. We met two other patients who had had cord blood transplants today. One patient had a very new procedure where he received a mini transplant from a matched sibling, then a mini transplant from cord blood. He had experienced quite a bit of GVHD, mostly concentrating on his skin. The other patient that we met lived in the same city where I went to highschool. He was having a rougher time of it, but he is also over 50. It was just nice to finally meet some other patients who had similar transplants and compare stories. We also ran into some friends from the transplant floor today. It was quite a social day. :)

Tomorrow is the big move. Chris hired a company to come clean out the air ducts, so I can't go over until after 3pm. I get so out of breath just walking to the bathroom, that I wouldn't have been much use during the move. I've pre-packed clothes to help. I'll just sit and be cute while they do the heavy lifting. I'm exhausted, so I'll end it all here.

Thursday, July 5, 2007

New digs

Day +35 (Day 173)

If you've been following the blog, you know that we have to move since we're only able to stay at the charity owned apartment for six months. Chris managed to secure an apartment down the street at a different complex on short notice and everything seemed to be in place. A few days ago we got a call from our current landlord who had managed to find us another apartment with a different charity. (This was extremely nice of her, since she didn't have to do it). This ratcheted up our time frame and we were caught a little off guard. Chris had to cancel the lease at the first apartment and return most of the furniture that he'd bought to furnish it.

The new apartment that we'll be moving to is actually in the same complex that we're in now. I got a chance to see it for the first time today. It's the exact same layout, but just a little bit smaller. The one thing that we noticed was that the air vents were covered in a gray-black powder. Because of my immune system, I can't get up close and personal with lots of dust or any type of mold. It's because we're afraid of an infection settling in my lungs. Chris checked the air filter, and it hadn't been changed in eons. So, just to be safe, he's having the ducts cleaned before I move in. I don't know how much this will help, but it's something.

I'm having a problem with shortness of breath today, which points to low hemoglobin. We're planning on a long day tomorrow, since blood takes forever. My platelets should be low, too, so I should get a few units of that, too. I'll kick off the day in the diagnostic center getting blood drawn, then I'm off to physical therapy for half an hour. After that, it's IV central.

Good news, our friend Nancy is at 100 percent engraftment. Hooray!

Other than that, I don't have anything else to report.

Tuesday, July 3, 2007

Day +33 (Day 171)

Chris has declared that he is taking a vacation from blogging and I am now in charge. I think this is really funny, since he kept asking me when I was going to blog today. He finally handed me the computer with a knowing look, and so here I sit typing away. He'll crack in a day or two. :)

Our appointment at the clinic today was at noon with a blood draw at 11am. Appointments at the ATC in the middle of the day are dicey. You might get in right away, or you might wait for up to two hours. Essentially, you are at the mercy of the patients who had morning appointments. Occasionally, there are complications, and patients have to stay for transfusions, or extra infusions. Today, we waited for an hour and a half. A nurse came out and apologized and informed the patients in the waiting room that the wait would be long due to complications. I've been that patient, so I didn't mind the wait. We took the opportunity to go get lunch. I only mention this because I got a chance to go to the cafeteria and sit in public. I haven't done this in so long, I had to look at everything. Of course, I had to sit in a far corner away from everyone, just to be on the safe side, due to my baby immune system.

It was absolutely bizarre to be eating in public. I kept wanting to put my mask on in between bites, just in case someone coughed or sneezed. This was ridiculously paranoid on my part, since the closest person to me beside Chris was over 15 feet away. People can't spit that far, let alone propel their nefarious sneezy germs at me. I will admit that I had the mask on immediately after I finished eating and I purelled my hands twice. I'm not taking any chances. I've made it this far, and I'm not letting my guard down just yet.

We finally got into a room and I got hooked up immediately. My team came in shortly after and informed me that I'd be going back on the intermate. I just can't absorb magnesium. I take 2000mg orally and I get a big bag of saline and magnesium in clinic as well as the intermate at home. My PharmD is slowly increasing my oral magnesium. By Friday, I should be on 2500mg. He seems to be increasing it every four days. My nurse told me that she's seen patients take as many as 15 magnesium pills a day. These pills are honkers. Truly enormous. I couldn't imagine taking 15 of them a day. It would be like a meal.

I also got a bag of lasiks today. Chris ratted me out to the APN--because he loves me, and I forgot to bring it up. I've been getting short of breath, especially when I'm active. Active not in the sense that I'm jogging, but active in the sense that I'm trying to do normal things, like walk from point A to point B at a moderate pace. I've been complaining about retaining fluid due to all of my infusions. My fat pants don't fit anymore. The waist bands all have started rolling over when I sit. Very sexy stuff. My team has been watching my weight creep up over the last two weeks, and my doctor was of the opinion that it's better to be too wet than too dry. To put things in perspective, I'm carrying an extra gallon of fluid give or take, according to my weight. That's around eight pounds. If you start to retain too much fluid, it puts your heart and lungs at risk. The lasiks did it's job and I was running to the bathroom every 10 minutes. I don't think it took care of everything, but it's nice to be able to take a full breath.

Now for the good stuff.

We got the pathology report back on my bone marrow biopsy. (My butt still hurts from the puncture site). My counts are through the roof because I got neupogen yesterday. They'll level off again, because I'm off neupogen again. The pathology report showed "no morphologic evidence of residual acute leukemia." Yippee! No leukemia. We're still waiting on the DNA and chimerism tests. This will take a few weeks and I can't wait.

Monday, July 2, 2007

Getting Physical

Day +32 (D 170)

Today we got the preliminary results of Ann's day +30 bone marrow biopsy. The preliminary results are just a differential count of the various cell types found in a sample or smear. Which by the way look all normal across the board. Specifically out of 400 cells counted only 2% are immature blast cells, which is perfectly normal. What is also encouraging is that the sample was not hypocelluar. That indicates that the new stem cells have really taken to there new home and are occupying lots of volume in Ann's bones. However, we still have to wait a bit more for the molecular studies from MDA's pathology lab and the chimerism study.

Ann's blood work was a bit low today, but that was to be expected after getting the weekend off with no neupogene (WBC 2.6 K/uL and ANC 1.84 K/uL). Because her ANC count dropped to the low side of normal we are going back on neupogene tonight and maybe tomorrow. The transplant team decided today that they are going to try to wean Ann off of intermate pumps of magnesium in favor of 500 mg pills. This is really welcome news because it puts us one step closer to not needing her CVC.

Finally the transplant center got Ann enrolled in the physical therapy program, and she spent part of her clinic visit getting evaluated by the therapists. The consensus of which is that she is in exceptional shape, except for some weakness in the thighs due to muscle loss dating back to her first round of chemo. However, they quickly arranged an exercises program for her that will address that problem. So from now on we will report to clinic in the morning, get hooked up on IV Fluids and then proceed to the gym for exercises.

Ann is sore from the workout but really excited to be moving forward.


Welcome to the MDA Physical Therapy Gym


Ann gets evaluated


Working out on the arm bike