This morning, I awaited my blood test results with particular interest. My ANC of 26 from yesterday didn't look very promising. All morning, I huddled over my laptop looking for the results. The first result to come around 9:30 was the WBC, which jumped considerably from 0.2 to 1.13. That was encouraging, but I still needed big improvements in the neutrophis% and the bands% to complete the formula in the last post. It turned into somewhat of an agonizing wait, since the rest of the results were listed as pending for hour after hour. Finally at about 1:15, I checked the Patient Gateway, and the results were finally posted. The neutrophils% was 64% and the bands% was 6%. Plugging those into the magic formula computed an ANC of 791, way above the 500 minimum! That means I'm going home tomorrow, at least two days early. I am psyched!
It's interesting that when we first got this room, my nurse, Rebecca, said this has been a lucky room. The last 3 or 4 patients in this room all went home 2 days earlier than planned! There must be some kind of Voodoo going on here. On the other hand, she said that one of the other rooms in this pod has quite the opposite history, and she thinks some kind of exorcism might be needed for that one. I'm sure glad I got this room instead.
Unfortunately, my hematocrit count, which was hovering up and down near the blood-transfusion threshold of 24, finally decided to come in at exactly 24 today, so I had to get a pint of blood. Rats. I was hoping to avoid that, but most transplant patients need at least one transfusion of platelets and blood.
It would be too easy to say that my hemorrhoids are a pain in the ass, so I won't. Other than that, I'm feeling really good today. I feel like I have more energy and no other aches or pains. I'm trying to eat a little more, but most of the food choices still don't appeal to me. I hope that improves when I get home. On the bright side, I ordered dinner tonight of a hotdog on a butter-toasted bun with ketchup and relish, fritos, a raisin cookie and a root beer., and I ate it all. I also downed a yogurt an hour earlier.
My weight has really gone down while I've been here. The most dramatic example of that came today after my shower, when the nurse went into the bathroom and found my wedding ring on the shower floor! I already lost my MIT class ring that way, so I had better get this re-sized soon. In the mean time, I'm wearing it on my middle finger, which is just big enough to hold it.
Tomorrow at this time, I'll be home. I can't wait!
By the way, I found the penny!
Saturday, March 31, 2012
Friday, March 30, 2012
Homeward Bound
The last couple of days have been eventful, and I have been remiss by not keeping up with this blog. My annoying back itch finally went away, only to be replaced by rather painful hemorrhoids. I'll spare you the details. I'm not sure which is worse. However, with these being the only complaints I have, I know how lucky I am...no mouth sores, no bone pain, no nausea. I haven't been at all hungry and haven't eaten much, but nobody seems too concerned about that, even though I have lost another 5 pounds. Their big concern is that I stay hydrated, so I have been trying to drink about 2 liters of liquids a day.
My platelet count has continued to plummet, as you can see by this chart. By this morning, it had dropped to 13. Anticipating that it would surely be below 10 by tomorrow, they gave me a platelet transfusion this afternoon. My hematocrit numbers keep hovering just above the threshold level of 24, so I'm hoping that continues so as to avoid having to have a blood transfusion as well.
The big question now is when can I go home? I was encouraged when the possibility was mentioned that I might get out this weekend! It all depends on my numbers, specifically, my Absolute Neutrophil Count (ANC). This number has to be over 500 for two days in a row before I can go home. The ANC is computed by a formula related to my WBC:
My WBC has steadily risen over the past two days, albeit slowly, as the following chart shows:
Using the above formula, my ANC is only 26 today, far short of the target of 500! It therefore appears unlikely that it will increase to over 500 by tomorrow. I'm starting to resign myself to probably being here until Monday, but I'll be really upset if it takes any longer than that. I WANT TO GO HOME!
I have been overwhelmed with the number of visitors I have been getting almost every day. That has really helped to keep my spirits up and has made the time pass quickly. Thank you all so much!
By the way, nobody has found the penny yet!
My platelet count has continued to plummet, as you can see by this chart. By this morning, it had dropped to 13. Anticipating that it would surely be below 10 by tomorrow, they gave me a platelet transfusion this afternoon. My hematocrit numbers keep hovering just above the threshold level of 24, so I'm hoping that continues so as to avoid having to have a blood transfusion as well.
ANC = WBC(#/ul)*[neutrophils(%) + bands(%)]
My WBC has steadily risen over the past two days, albeit slowly, as the following chart shows:
I have been overwhelmed with the number of visitors I have been getting almost every day. That has really helped to keep my spirits up and has made the time pass quickly. Thank you all so much!
By the way, nobody has found the penny yet!
Wednesday, March 28, 2012
ASCT Day +8
Last night I got a good night's sleep, and I also spent a lot of time this morning napping. I just felt like being a slug today.
My back itching (probably folliculitis) has finally started to get better. Today I didn't need a pill, and a couple of applications of Benadryl ointment seemed to do the trick.
My counts came back pretty good today. My WBC stayed steady at 0.07, which might mean the worst is over. The nurses expect it to start going up again, possibly by tomorrow. The hematocrit actually went up from 24.9 to 25.4, so I am hopeful that I won't need a blood transfusion. My platelets dropped from 93 to 57, still well above the threshold of 10 that would necessitate a platelate transfusion.
The attending physician who saw me today said I was doing A+ so far. That's good news, especially since I still have no mouth sores and I don't feel sick, aside from an occasional bout of nausea, which usually fades quickly.
I've been getting daily shots of Neupogen to help stimulate stem cell growth. I came across a medical article from the Mayo Clinic which said that the Neupogen didn't help and actually caused more side effects. Now the Mayo Clinic doesn't use Neupogen on post-transplant patients. I emailed a copy of the article to Dr. Richardson, asking his views. His rather succinct response was "suggest you need it and will be coming by to see you." I guess that settles that.
I am now looking forward to going home. I am nominally scheduled to go home next Tuesday (Day +14), but I have high hopes of getting out of here as early as Sunday (Day +12). That will all depend on how quickly my WBC goes up so that my absolute netrophil count (ANC) is high enough.
When Gloria and Bernie were here, they gave me a game called Find It, which is a clear plastic cylinder filled with plastic pellets, within which are hidden about 50 objects. It's quite addictive to try identifying all the objects by shaking and rolling the cylinder until an object comes into view. One of the objects is a penny, and whoever finds it gets a bonus for reading the date on the penny. So far, Jeff, Holly, Gretchen, and I have all been working diligently to find all the objects, but none of us has yet found the penny.
I almost hate to admit this, but while I was dozing off this afternoon, I dreamed that I found the penny. What a pitiful life I must lead to dream of finding a penny. Why not the Lottery, for cripes sake?
My back itching (probably folliculitis) has finally started to get better. Today I didn't need a pill, and a couple of applications of Benadryl ointment seemed to do the trick.
My counts came back pretty good today. My WBC stayed steady at 0.07, which might mean the worst is over. The nurses expect it to start going up again, possibly by tomorrow. The hematocrit actually went up from 24.9 to 25.4, so I am hopeful that I won't need a blood transfusion. My platelets dropped from 93 to 57, still well above the threshold of 10 that would necessitate a platelate transfusion.
The attending physician who saw me today said I was doing A+ so far. That's good news, especially since I still have no mouth sores and I don't feel sick, aside from an occasional bout of nausea, which usually fades quickly.
I've been getting daily shots of Neupogen to help stimulate stem cell growth. I came across a medical article from the Mayo Clinic which said that the Neupogen didn't help and actually caused more side effects. Now the Mayo Clinic doesn't use Neupogen on post-transplant patients. I emailed a copy of the article to Dr. Richardson, asking his views. His rather succinct response was "suggest you need it and will be coming by to see you." I guess that settles that.
I am now looking forward to going home. I am nominally scheduled to go home next Tuesday (Day +14), but I have high hopes of getting out of here as early as Sunday (Day +12). That will all depend on how quickly my WBC goes up so that my absolute netrophil count (ANC) is high enough.
When Gloria and Bernie were here, they gave me a game called Find It, which is a clear plastic cylinder filled with plastic pellets, within which are hidden about 50 objects. It's quite addictive to try identifying all the objects by shaking and rolling the cylinder until an object comes into view. One of the objects is a penny, and whoever finds it gets a bonus for reading the date on the penny. So far, Jeff, Holly, Gretchen, and I have all been working diligently to find all the objects, but none of us has yet found the penny.
I almost hate to admit this, but while I was dozing off this afternoon, I dreamed that I found the penny. What a pitiful life I must lead to dream of finding a penny. Why not the Lottery, for cripes sake?
Tuesday, March 27, 2012
Transplant Update
I'm starting to notice the side effects of the Melphalan a bit more today. My back is still bothering me, despite several applications of Benadryl ointment. I took another anti-itching pill this evening, and I think it's starting to work. Jeff suggested an ice pack, so the nurse brought me one, and that seemed to help. It feels OK now.
I was also pretty tired today. I guess that's no surprise, since my WBC count has dropped to 0.07, a 99% decrease from it's value 8 days ago! Gulp! I sure hope those new stem cells get to work generating new white blood cells soon. My platelets have also dropped from a high of 308 to 93, which was expected.
Aside from staving off occasional diarrhea, my only other problem is I'm just not hungry. I haven't been nauseous, but the thought of food still doesn't excite me. I tried to eat a buffalo chicken sandwich tonight, but after 2 bites, I shitcanned it.
On the bright side, I still have no mouth sores, and I'm not in any pain. My left leg was bothering me some yesterday, but I had the pleasure of getting a Reiki treatment last night from our friend, Denise. It seemed to work, since the pain is gone! Thanks, Denise! Also, my hematocrit is hanging in at 24.9, still above the blood transfusion level of 24. I hope that stays up there. The doctors and nurses all say that I am doing better than most patients so far. Let's hope that continues.
I really appreciate the time and effort many of you have taken to come visit me. I really enjoy the company. I may be entering a few days of not feeling in top form, but I'm always glad to have visitors.
Aside from staving off occasional diarrhea, my only other problem is I'm just not hungry. I haven't been nauseous, but the thought of food still doesn't excite me. I tried to eat a buffalo chicken sandwich tonight, but after 2 bites, I shitcanned it.
On the bright side, I still have no mouth sores, and I'm not in any pain. My left leg was bothering me some yesterday, but I had the pleasure of getting a Reiki treatment last night from our friend, Denise. It seemed to work, since the pain is gone! Thanks, Denise! Also, my hematocrit is hanging in at 24.9, still above the blood transfusion level of 24. I hope that stays up there. The doctors and nurses all say that I am doing better than most patients so far. Let's hope that continues.
I really appreciate the time and effort many of you have taken to come visit me. I really enjoy the company. I may be entering a few days of not feeling in top form, but I'm always glad to have visitors.
Monday, March 26, 2012
ASCT Day +6
It has been almost a week since my transplant, and I am still feeling pretty good. Yesterday, my other OCRM (Old College Roommate), Bernie, and his wife, Gloria, drove up from Connecticut to visit me. It was very nice to see them. It was a full visitation day, as Bobby, Gretchen, Holly, and Jeff were also here. Great! Holly has brought in some pieces of flair to brighten up my room.
Yesterday, my back was itching badly and even the Benadryl ointment didn't help. My nurse, Rebecca, got me a pill (I forget the name of it), and that really helped. I didn't need any more ointment yesterday, and it still feels pretty good today after only one dose. This morning the redness has faded some, so it seems to be getting better.
I started receiving daily injections of Neupogen yesterday at half the dose I took before my stem cell collection. This lower dose should cause less bone pain, but I should be OK, since I didn't experience any before. The Neupogen should stimulate the growth of white blood cells. Sure enough, my WBC numbers actually went up today! Here is a graph showing my WBC since last Sunday:
I was told that this uptick is probably temporary, and it will likely go down further before it rebounds permanently.
My hematocrit increased slightly today, so I can hopefully avoid a blood transfusion. Also, my platelets are finally dropping, down to about half of where they were a few days ago. This is expected.
I felt a little on the verge of nausea earlier today, so they gave me a new pill, Zydis. This drug is often used as an anti-psychotic, so I should get a double benefit. ;-)
So far, I have only faced minor issues since coming to BWH. Dr. Paba Prada dropped by today, and she thinks I am doing very well. I'm pretty optimistic that I may get through this hospital stay without any serious difficulties. So far, so good.
Yesterday, my back was itching badly and even the Benadryl ointment didn't help. My nurse, Rebecca, got me a pill (I forget the name of it), and that really helped. I didn't need any more ointment yesterday, and it still feels pretty good today after only one dose. This morning the redness has faded some, so it seems to be getting better.
I started receiving daily injections of Neupogen yesterday at half the dose I took before my stem cell collection. This lower dose should cause less bone pain, but I should be OK, since I didn't experience any before. The Neupogen should stimulate the growth of white blood cells. Sure enough, my WBC numbers actually went up today! Here is a graph showing my WBC since last Sunday:
I was told that this uptick is probably temporary, and it will likely go down further before it rebounds permanently.
My hematocrit increased slightly today, so I can hopefully avoid a blood transfusion. Also, my platelets are finally dropping, down to about half of where they were a few days ago. This is expected.
I felt a little on the verge of nausea earlier today, so they gave me a new pill, Zydis. This drug is often used as an anti-psychotic, so I should get a double benefit. ;-)
So far, I have only faced minor issues since coming to BWH. Dr. Paba Prada dropped by today, and she thinks I am doing very well. I'm pretty optimistic that I may get through this hospital stay without any serious difficulties. So far, so good.
Saturday, March 24, 2012
Medicine Cabinet
In my idle moments, I have time to reflect on all the medications I am taking here. I'm sure this would be a fascinating topic for you, so let me enlighten you.
My morning starts off with a panoply of pills. These include:
- lisinopril - blood pressure
- amlodipine - blood pressure
- simvastatin - cholesterol
- omeprazole - reflux
- actigall - liver
- folic acid - anemia
- levaquin - antibiotic
- acyclovir - antiviral
- vitamin B12
- vitamin D
- vitamin E
- multivitamins
- calcium
Friday, March 23, 2012
ASCT Day +3
I'm still feeling good, although my back has been very itchy, and I am fighting off some diarrhea. The nurse gave my some Benadryl cream for the former and imodium for the latter, which helps. I don't have much appetite, but I'm trying to eat whenever I can to keep from losing any more weight. I expect I won't eat too much over the next week, so I'm trying to store some reserve.
Earlier today, I suddenly heard harp music in my room. (No, I didn't think I'd just been transported to the Great Beyond.) At first I wondered if it were being piped in, but I saw no speakers. Then a nurse came in and asked me, "Did you know that there is harpist playing outside your door?" No I didn't. A few minutes later, Gretchen walked in, and asked me if I had met her new friend.
It turns out that Gretchen met Nancy the harpist yesterday playing in the hospital lobby. She stopped to talk to her (surprise!) and told her about my stay here. Nancy then told Gretchen that she would come play for me today, and she did. It was hauntingly lovely, as I sat at my door enraptured by the dulcet tones of the Irish harp for the next 15 to 20 minutes. It was truly a memorable gift. Thank you, Nancy! Thank you, Gretchen!
By the way, one of the nurses told me that Nancy sometimes plays on this floor, and her favorite piece to play is "Stairway to Heaven", probably not the ideal choice for a cancer ward!
Holly arrived from San Francisco today and will stay until next Friday. It was so great to see her! She brought me some delicious Ghirardelli chocolates. Yum! Thank you, Holly. Holly has also decided that my room needs some brightening up, so she plans to add pictures and other symbols of good cheer while she is here.
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| Nancy, the harpist |
Earlier today, I suddenly heard harp music in my room. (No, I didn't think I'd just been transported to the Great Beyond.) At first I wondered if it were being piped in, but I saw no speakers. Then a nurse came in and asked me, "Did you know that there is harpist playing outside your door?" No I didn't. A few minutes later, Gretchen walked in, and asked me if I had met her new friend.
It turns out that Gretchen met Nancy the harpist yesterday playing in the hospital lobby. She stopped to talk to her (surprise!) and told her about my stay here. Nancy then told Gretchen that she would come play for me today, and she did. It was hauntingly lovely, as I sat at my door enraptured by the dulcet tones of the Irish harp for the next 15 to 20 minutes. It was truly a memorable gift. Thank you, Nancy! Thank you, Gretchen!
By the way, one of the nurses told me that Nancy sometimes plays on this floor, and her favorite piece to play is "Stairway to Heaven", probably not the ideal choice for a cancer ward!
Holly arrived from San Francisco today and will stay until next Friday. It was so great to see her! She brought me some delicious Ghirardelli chocolates. Yum! Thank you, Holly. Holly has also decided that my room needs some brightening up, so she plans to add pictures and other symbols of good cheer while she is here.
Wednesday, March 21, 2012
Bad Hair Day
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| Gretchen and me with Mohawk |
Well, the inevitable finally started to happen. This morning, I noticed my hair starting to fall out, so I took the plunge and had my nurse, Kristina, shave it off. Yuck. At first, I told her to give me a Mohawk, just to see how it looked. As you can see, the result is not very impressive.
Other than that, I'm still doing fine. I had a slight bout of nausea today, but it went away in a few minutes. I'm still on anti-nausea drugs, which have been working really well.
They have posted a chart in my room so I can track my numbers daily. The important ones are my White Blood Cell (WBC) count, my hematocrit, and my platelets. My WBC is at 2.5 and has already started to plummet, which is expected. It will go down to almost zero before the stem cells engraft. My hematocrit is already a little low (28) because of my anemia. If it drops below 24, I will need to get a blood transfusion. The platelets will take the longest to drop (about a week I think). It's now at about 308, and If that number drops below 10, I will need a platelet transfusion. This is all normal and expected.
Now I just have to wait for my stem cells to take over and rebuild my immune system from scratch, hopefully without any trace of the MM.
Tuesday, March 20, 2012
Stem Cells Infused
Yesterday, I got my second melphalan treatment. It was a bit scary knowing that the chemo was totally destroying all my body's defenses. Surprisingly, I still felt fine, probably due to the anti-nausea meds I was given.
Today was a whirlwind of activity. I had more visits than I can count from nurses, aides, attending physicians, interns, teaching assistants, physical therapists, dentists, nutritionists, and volunteers, to name a few. I am certainly getting an intensive level of care here. It's really great, but I have to admit it can get annoying to have a continuing procession of staff visitors hovering over me. There are times I want to be able to just lock the door.
Apparently I passed the test of not being allergic to sulfa drugs. Yay! I was on bactrim for almost 3 days with no visible reaction. That's good to know.
Today was the big day to get my stem cells back. They started at around 12:30. The whole process was somewhat anticlimactic, as it only took about half an hour to inject them into my Hickman port. They also gave me benadryl, tylenol, and ativan, so I was pretty sleepy all afternoon. However, I'm feeling fine now, still with no signs of nausea. Today is the first day of my new life with a new immune system, so Happy Birthday to me!
The stem cells came in two bags, one with 3.2 million/kg and the other with 2.2 million/kg. So it appears that Dr. Richardson decided to give me more than half of what was collected, leaving about 4.5 million/kg in reserve for a possible future transplant, unlikely as that may be. I'm comfortable with that.
I'll try to update this blog regularly over the next couple of weeks, depending on how I feel.
Today was a whirlwind of activity. I had more visits than I can count from nurses, aides, attending physicians, interns, teaching assistants, physical therapists, dentists, nutritionists, and volunteers, to name a few. I am certainly getting an intensive level of care here. It's really great, but I have to admit it can get annoying to have a continuing procession of staff visitors hovering over me. There are times I want to be able to just lock the door.
Apparently I passed the test of not being allergic to sulfa drugs. Yay! I was on bactrim for almost 3 days with no visible reaction. That's good to know.
Today was the big day to get my stem cells back. They started at around 12:30. The whole process was somewhat anticlimactic, as it only took about half an hour to inject them into my Hickman port. They also gave me benadryl, tylenol, and ativan, so I was pretty sleepy all afternoon. However, I'm feeling fine now, still with no signs of nausea. Today is the first day of my new life with a new immune system, so Happy Birthday to me!
The stem cells came in two bags, one with 3.2 million/kg and the other with 2.2 million/kg. So it appears that Dr. Richardson decided to give me more than half of what was collected, leaving about 4.5 million/kg in reserve for a possible future transplant, unlikely as that may be. I'm comfortable with that.
I'll try to update this blog regularly over the next couple of weeks, depending on how I feel.
Sunday, March 18, 2012
So It Begins
Yesterday I checked into Brigham and Women's Hospital (BWH) to undergo my autologous stem cell transplant (ASCT) process. The room is spacious, and the staff is efficient and friendly. Gretchen, Jeff, and Brian all came with me to make sure I got settled in OK. My first night was uneventful.
An interesting side note. I have been telling everyone that I may be allergic to sulfa drugs. This is because a few years ago, I was given a sulfa antibiotic to combat what the doctor thought was a urinary tract infection (UTI, for those in the know). I developed a rash a few days later, so the doctor said it was the sulfa drug. However, I was never totally convinced of this, because I was later diagnosed with Lyme Disease, which also can cause rashes as well as some of the symptoms attributed to the UTI. I therefore remain unsure about both the UTI and the sulfa allergy. In any case, the staff here started me on Bactrim last night as a prophylactic antibiotic. This morning, the attending physician, Dr. Shipp, asked me whether I was really allergic to sulfa. I said I wasn't sure, so the decision was made to keep giving me Bactrim (a sulfa drug) and see how I react. I find it a bit odd that they would go about it this way. I think it was a pretty rash decision, but so far so good. It would be good to find out that I can tolerate sulfa drugs, because they are the antibiotic class of choice for many complications I may encounter in the future with my MM.
Today at noon, I was due to receive my first dose of melphalan to kill off my bone marrow. They started me on fluids to hydrate me around 10:00. When 12:00 came and went and the Governor didn't call with a pardon, they began the infusion. It took about a half hour. I chewed on ice chips and popsicles before, during and after the infusion to minimize the chance of developing painful mouth sores from the chemo.
So far, I still feel fine. However, the effects of the melphalan should kick within 24 to 48 hours, so the moment of truth is nearly at hand. Here is a list of possible melphalan side effects from Wikipedia:
Anyway, tomorrow, I get my second and last infusion of melphalan. Then on Tuesday, I will get half of my collected stem cells re-infused. After that, the rest of the time here will be spent recovering.
An interesting side note. I have been telling everyone that I may be allergic to sulfa drugs. This is because a few years ago, I was given a sulfa antibiotic to combat what the doctor thought was a urinary tract infection (UTI, for those in the know). I developed a rash a few days later, so the doctor said it was the sulfa drug. However, I was never totally convinced of this, because I was later diagnosed with Lyme Disease, which also can cause rashes as well as some of the symptoms attributed to the UTI. I therefore remain unsure about both the UTI and the sulfa allergy. In any case, the staff here started me on Bactrim last night as a prophylactic antibiotic. This morning, the attending physician, Dr. Shipp, asked me whether I was really allergic to sulfa. I said I wasn't sure, so the decision was made to keep giving me Bactrim (a sulfa drug) and see how I react. I find it a bit odd that they would go about it this way. I think it was a pretty rash decision, but so far so good. It would be good to find out that I can tolerate sulfa drugs, because they are the antibiotic class of choice for many complications I may encounter in the future with my MM.
Today at noon, I was due to receive my first dose of melphalan to kill off my bone marrow. They started me on fluids to hydrate me around 10:00. When 12:00 came and went and the Governor didn't call with a pardon, they began the infusion. It took about a half hour. I chewed on ice chips and popsicles before, during and after the infusion to minimize the chance of developing painful mouth sores from the chemo.
So far, I still feel fine. However, the effects of the melphalan should kick within 24 to 48 hours, so the moment of truth is nearly at hand. Here is a list of possible melphalan side effects from Wikipedia:
Common side effects include:
- Nausea and vomiting, and oral ulceration.
- Bone marrow suppression, including
- Decreased white blood cell count causing increased risk of infection
- Decreased platelet count causing increased risk of bleeding
Less common side effects include:
- Severe allergic reactions
- Pulmonary fibrosis (scarring of lung tissue) including fatal outcomes (usually only with prolonged use)
- Hair loss
- Interstitial pneumonitis
- Rash
- Itching
- Irreversible bone marrow failure due to melphalan not being withdrawn early enough.
- Cardiac arrest.
Anyway, tomorrow, I get my second and last infusion of melphalan. Then on Tuesday, I will get half of my collected stem cells re-infused. After that, the rest of the time here will be spent recovering.
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