The "numbers" days are always nerve wracking. Results from the bone marrow biopsy done yesterday show the 90% plasma cells knocked down to 48%--a 50% drop. From talking with the nurses in the transplant unit, this response (50% reduction) is very good and about what they expect, so the Beam did its job. Our journey began with hopes of a double transplant and remission but we've hit a few bumps along the way, not the least of which was the spike in the plasma cells that the first 2 chemo regimes hardly touched. I am quite pleased that we've made some progress and am adjusting to the idea that this is going to be a longer treatment process in Arkansas than expected. (Our love affair with Little Rock will continue, I guess) That being said, given the need to recover from the "super beam" chemo, and transplant, we'll be returning to Denver sometime next week for a few weeks of recovery. After that we'll have a return visit to see Barlogie and decide on the course going forward and the need for continued treatment in Little Rock. That will depend on where my numbers are at that time and a variety of other variables I'm sure I'm unaware of. We do know that it's a long road back from a transplant. I don't know whether this transplant has been more rigorous or not, but it certainly has presented its challenges. and, as happened 4 years ago, I've lost all my hair, and dropped 35 pounds. So, don't freak out if you run into me.
Frankly I wasn't expecting to be "released" so soon. But my white count jumped in the last 2 days--we're now over 2! And other blood counts should start to stabilize. I'll be monitored at the clinic at home, with twice weekly shipments of blood to Arkansas for evaluation. I haven't fully processed what returning to life in Denver and still being tethered to Little Rock is going to be like. We will sort those things out as we move forward. I have many thoughts racing through my head at this hour but am mostly reminded that when first diagnosed I was told this was incurable but treatable. This latest treatment has taught us much, humbled us more, and made us more grateful for all of you for the never ending support during these past months. Do not underestimate how much your contact helped. I could not tell you how many times Susan and I said to one another, "what would we do without our family and friends."
Thank you.
Love,
Dan
Thursday, April 30, 2009
Sunday, April 26, 2009
A Difficult Week
This past week has been a challenge. Due to the bacterial infection in my GI tract they loaded me with more antibiotics and drugs than I thought one could handle. All done to prevent any further bugs, as well as to treat the out of control bug. Of course, the drugs did their job but also had their own side effects. This past week I got hit with all the side effects one could imagine. I'll spare you the details. On Friday, after a sleepless night I went in to the clinic and said they had to take me off some of these drugs as I wasn't sure whether they were making me better or making me sick. No resistance to my request and the drug regime was modified. And not surprisingly, I'm feeling better.---relatively. Most encouraging to me is that fact that my appetite is gradually returning. I went for 2 weeks where I could not keep anything down and, of course began to fret that I would just get weaker and pick something else up. The nurses didn't seem concerned, as they filled me with fluids, potassium, etc. every day. Anyway, I can actually taste food again and expect that getting some nutrients should help the recovery.
We're still watching the white cells, which are moving upward, but quite slowly. But eventually they will get to normal levels. They are the barometer of the transplanted stem cells engrafting into the bone marrow. I'm recovering slower than expected but the counts continue to move upward so we're told to just be patient. Otherwise the days are quite boring. We typically spend 3 to 4 hours at the clinic where I get infusions of antibiotics, platelets, etc. We're usually sent home with some bottles of potassium that Susan has to change every 5hours. And so it goes.
Julia will be joining us tomorrow for another 5 days, which will be a nice respite for Susan. And as for Susan, I told her today that she is amazing. She is full of energy, always in a good mood and cheers me up every day. Of course, she has made many new friends. The story I like most is the guy who tried to pick her up at church---no kidding. He sat very close to her, tightly held her hand during the Our Father, and then, (in Spanish) asked her to put her phone number in his cell phone. Gotta watch out for these Arkansasans.
Here's to spring bringing us new life.
Dan
We're still watching the white cells, which are moving upward, but quite slowly. But eventually they will get to normal levels. They are the barometer of the transplanted stem cells engrafting into the bone marrow. I'm recovering slower than expected but the counts continue to move upward so we're told to just be patient. Otherwise the days are quite boring. We typically spend 3 to 4 hours at the clinic where I get infusions of antibiotics, platelets, etc. We're usually sent home with some bottles of potassium that Susan has to change every 5hours. And so it goes.
Julia will be joining us tomorrow for another 5 days, which will be a nice respite for Susan. And as for Susan, I told her today that she is amazing. She is full of energy, always in a good mood and cheers me up every day. Of course, she has made many new friends. The story I like most is the guy who tried to pick her up at church---no kidding. He sat very close to her, tightly held her hand during the Our Father, and then, (in Spanish) asked her to put her phone number in his cell phone. Gotta watch out for these Arkansasans.
Here's to spring bringing us new life.
Dan
Sunday, April 19, 2009
FIrst Numbers Report
The news we've all been waiting for: Is it working? Yes. Today we received the report of IGG levels and M protein. IGGs have dropped from 5300 to 2500. M protein dropped from 3.6 to 2.1. We know more comprehensive studies will be needed over the next couple of months, but for now we are very pleased to know that it appears the beam is killing off the myeloma cells. Typically over the next couple of weeks/month the downward trend should continue. My white count continues to languish at 0.01.
As an aside, I share this incident from the weekend visit at the clinic. Given the nonmovement of my white count, my nurse decided to talk to the on call doctor. This young doctor recommended that I have a bone marrow biopsy on Monday to determine whether I had enough stem cells, and if not, then to give me more of my stem cells. A supplementary transplant????? Anyway, when the nurse told me this was the plan, I simply said, NO. I conveyed the refusal 2 more times, and then learned today of other, much less traumatic means to address the problem. I share this because one lesson we've learned is that one has to be on the ball with the weekend crew, whether it's the on call doctor or the nursing crew. I suspect more medical errors occur during the weekends than the other 5 days of the week. My friend, Ted, tells me that Barlogie will be in Denver this week for a myeloma conference. So, unless absolutely necessary, no decisions will be made regarding any treatment until he returns.
In the meantime, I continue to deal with this torn up GI tract. I picked up this nasty bug, which is contageous. So, when I get to the clinic they immediately escort me to a private room at the end of the hall, so I don't infect anyone else. I'm given multiple IVs of antibiotics daily, along with potassium. We usually spend 4 to 6 hours at the clinic. Then, at home I have meds that must be taken every 3 hours. Not much sleep occurring here. I am assured that, even without this nasty bug, people usually get sick from this beam treatment. As long as its killing the cancer, I'll deal with it.
Have a good week everyone.
Dan
As an aside, I share this incident from the weekend visit at the clinic. Given the nonmovement of my white count, my nurse decided to talk to the on call doctor. This young doctor recommended that I have a bone marrow biopsy on Monday to determine whether I had enough stem cells, and if not, then to give me more of my stem cells. A supplementary transplant????? Anyway, when the nurse told me this was the plan, I simply said, NO. I conveyed the refusal 2 more times, and then learned today of other, much less traumatic means to address the problem. I share this because one lesson we've learned is that one has to be on the ball with the weekend crew, whether it's the on call doctor or the nursing crew. I suspect more medical errors occur during the weekends than the other 5 days of the week. My friend, Ted, tells me that Barlogie will be in Denver this week for a myeloma conference. So, unless absolutely necessary, no decisions will be made regarding any treatment until he returns.
In the meantime, I continue to deal with this torn up GI tract. I picked up this nasty bug, which is contageous. So, when I get to the clinic they immediately escort me to a private room at the end of the hall, so I don't infect anyone else. I'm given multiple IVs of antibiotics daily, along with potassium. We usually spend 4 to 6 hours at the clinic. Then, at home I have meds that must be taken every 3 hours. Not much sleep occurring here. I am assured that, even without this nasty bug, people usually get sick from this beam treatment. As long as its killing the cancer, I'll deal with it.
Have a good week everyone.
Dan
Friday, April 17, 2009
An Answer to GI Problems
Today was a better day, if only because it provided an answer for the gut wrenching GI problems I've had for the past week. Probably due to the heavy antibiotics they've been given me, one of my standard stomach bacterias has taken over my gut and colon. So, of course, I ask when we'll be discontinuing the antibiotics---NOT. I continue with infusions ever 8 hours and now have some medication specifically targeting the out of control bacteria. No instant remedy here.
Our nights are broken up by the need to continually hook up infusers (small bottles of medication that are attached to my port) every 2 to 4 hours. Tonight we are supposed to go through 3 infusers of potassium and 3 infusers of antibiotics--all at different times. The days at the clinic seem to consume about 5 hours, as they draw labs and then, based on those results, invariably have to order blood or platelets, or something else to drip into my veins. Whenever I get blood they give me Benadryl because I had a reaction to some blood a month ago. That just puts me to sleep for the afternoon. I'm mostly watching my white cell count, which is the best indicator of when the transplant is engrafting. It has been at 0.01 for days and moved to 0.02 today. I'm not sure that is truely an increase in white cells or just the shadow of that solitary white cell. But we're hoping for another rise tomorrow.
Since I'm fighting this bacterial infection, have no immune system, and have no energy, I am essentially housebound. Susan is going stir crazy with this confinement and tries to exercise every day and get out to do something (is she really shopping at Walmart?). She takes such good care of me, madly cleans up to assure no bacteria are hanging around the apartment, puts up with my hours of silence as I doze, and worries. We are both anxious to return home. We continue to be inundated with good wishes, prayers, meditations, cards, letters, emails, gifts, and just plain good energy from all of you. We love you for your generosity and compassion.
Dan
Our nights are broken up by the need to continually hook up infusers (small bottles of medication that are attached to my port) every 2 to 4 hours. Tonight we are supposed to go through 3 infusers of potassium and 3 infusers of antibiotics--all at different times. The days at the clinic seem to consume about 5 hours, as they draw labs and then, based on those results, invariably have to order blood or platelets, or something else to drip into my veins. Whenever I get blood they give me Benadryl because I had a reaction to some blood a month ago. That just puts me to sleep for the afternoon. I'm mostly watching my white cell count, which is the best indicator of when the transplant is engrafting. It has been at 0.01 for days and moved to 0.02 today. I'm not sure that is truely an increase in white cells or just the shadow of that solitary white cell. But we're hoping for another rise tomorrow.
Since I'm fighting this bacterial infection, have no immune system, and have no energy, I am essentially housebound. Susan is going stir crazy with this confinement and tries to exercise every day and get out to do something (is she really shopping at Walmart?). She takes such good care of me, madly cleans up to assure no bacteria are hanging around the apartment, puts up with my hours of silence as I doze, and worries. We are both anxious to return home. We continue to be inundated with good wishes, prayers, meditations, cards, letters, emails, gifts, and just plain good energy from all of you. We love you for your generosity and compassion.
Dan
Wednesday, April 15, 2009
On Our Way
We are now one week from transplant, two weeks from the first high dose chemo. I wish I could say the ride has been uneventful, but not so. I'm told that the chemo is out of the system in 12 hours or less, but its effects continue for weeks. Like spraying weeds--the weeds don't die instantly, but wilt away over a few days. In this case the myeloma cells have been hit hard with the killer chemo and will take a few weeks, at the very least, to die off. So as the cells die I continue to be exhausted, my GI tract is a mess, and my appetite is gone. I've dropped 25 pounds since coming to Arkansas---an amazing feat in the land of the deep fat fryer!!
The last couple of days we've been dealing with an unidentified inflammation that's shown up in my blood work. Other than one night of fever, no other real symptoms, but that hasn't stopped them from going into high gear--because my immune system is wiped out. So we spend many hours at the clinic getting infusions of more antibiotics than I can remember, fluids, potassium, magnesium, platelets and blood. Can't take any chances given my lack of an immune system. All that being said, I am encouraged by how I feel. Being 2 weeks from the start of chemo and coming into day 7 of my transplant feel good. Despite the ups and downs, so far, so good.
And the Governor's letters continue to come in: the current list includes North Dakota, Wyoming, Nebraska, Oregon, Rhode Island, Tennessee, Kentucky, Montana, Virginia, New Hampshire, and the Chief Justice of the Indiana Supreme Court. Most of the notes are handwritten and express encouragement in my battle with myeloma. John Sadwith claims this idea was a 4 a.m. inspiration of his. I will say that it is fun to get the mail every day and see which governor has written to me today. Thanks John.
But our greatest joy is not the notes from the Governors, but rather the constant support we feel from all of you. Not a day goes by that we don't receive cards, gift baskets, emails, or some other reminder that you are here with us. We continue to be so grateful.
Love
Dan
The last couple of days we've been dealing with an unidentified inflammation that's shown up in my blood work. Other than one night of fever, no other real symptoms, but that hasn't stopped them from going into high gear--because my immune system is wiped out. So we spend many hours at the clinic getting infusions of more antibiotics than I can remember, fluids, potassium, magnesium, platelets and blood. Can't take any chances given my lack of an immune system. All that being said, I am encouraged by how I feel. Being 2 weeks from the start of chemo and coming into day 7 of my transplant feel good. Despite the ups and downs, so far, so good.
And the Governor's letters continue to come in: the current list includes North Dakota, Wyoming, Nebraska, Oregon, Rhode Island, Tennessee, Kentucky, Montana, Virginia, New Hampshire, and the Chief Justice of the Indiana Supreme Court. Most of the notes are handwritten and express encouragement in my battle with myeloma. John Sadwith claims this idea was a 4 a.m. inspiration of his. I will say that it is fun to get the mail every day and see which governor has written to me today. Thanks John.
But our greatest joy is not the notes from the Governors, but rather the constant support we feel from all of you. Not a day goes by that we don't receive cards, gift baskets, emails, or some other reminder that you are here with us. We continue to be so grateful.
Love
Dan
Saturday, April 11, 2009
Transplanted
The transplant went through on Thursday as planned. It was fairly uneventful--akin to getting a blood transfusion. They gave me 4.9 million stem cells. So now we wait for my white blood cells to go to 0--and they're almost there already; then wait for the transplanted stem cells to start producing new cells. The effects of the chemo continue to show themselves and probably will for another few days or week. Fatigue and exhaustion are the order of the day as this process takes it toll. I continue to be amazed that this is handled on an outpatient basis, but it certainly is better than being confined to the hospital. So every day we pull ourselves together and march off to the clinic to have labs drawn, blood checked, get some fluids and return to the apartment. Despite it all, we're glad to be at this point and looking forward to continued recovery.
And on a completely different note: John Sadwith has been up to his devious tricks once again. A few days ago I received two handwritten notes from the Governors of North Dakota and Wyoming, wishing me well in my recovery. It took awhile for me to believe they were real. Then yesterday I received two more letters--from the Governors of Tennessee and Kentucky! It seems John has used his influence with the many executive directors of the state trial lawyers associations to persuade his fellow directors to obtain letters to me from their governors. Talk about influence. Anyway, I apparently now have some political machinery pulling for me as well. John, you are one special guy.
Happy Easter to all.
Love,
Dan
And on a completely different note: John Sadwith has been up to his devious tricks once again. A few days ago I received two handwritten notes from the Governors of North Dakota and Wyoming, wishing me well in my recovery. It took awhile for me to believe they were real. Then yesterday I received two more letters--from the Governors of Tennessee and Kentucky! It seems John has used his influence with the many executive directors of the state trial lawyers associations to persuade his fellow directors to obtain letters to me from their governors. Talk about influence. Anyway, I apparently now have some political machinery pulling for me as well. John, you are one special guy.
Happy Easter to all.
Love,
Dan
Wednesday, April 08, 2009
A Day Off
This is my day of recovery after 5 days of high dose chemo. This morning they removed the bag of chemo and saline I've been toting around for the last 5 days. Also, no more infusions or oral chemo (including steroids). Tomorrow I have the transplant. They will give me back my stem cells. The procedure is very much like a blood transfusion. It will take about 30 minutes for the transplant, which is then monitored for a few hours. Then assuming everything goes well, I walk out of the clinic. The next week or two we then go in to the clinic every day for lab work and to watch as my white cells and platelets drop from the chemo, then recover from the stem cells I received. I guess you can say we're on our way. Finally. Without the steroids I'm expecting to crash in the next few days, as that certainly has been the pattern over the past several years. I think Susan will be spending more time at the library across the street (hiding out). Thanks again for all your love and support.
Dan
Dan
Friday, April 03, 2009
Beginnings
Yesterday we ecountered some scheduling problems, so the "super beam" chemo didn't start until today. We arrived at the outpatient transplant center at 8 a.m. and we were taken to a quiet room, with one other patient. Each of the patients has a recliner to relax in, there are plenty of IV poles, blood pressure gauges and all the typical hospital room paraphenalia. We started with 5 pills of anti nausea medication, then started one of the 4 chemos I would receive IV. The first drug I received came in a big glass container, circa 1950. Susan asked why it came in a glass container when everything else was in hard plastic. The answer: "you don't really want to know, but here's why---it would eat away the plastic." My response: "well then let's put it in my veins!"
I also received a shot of velcade, am carrying a bag of IV fluids along with a chemo drug, and have a couple of drugs I take orally at home (like the steroids, thalidomide). The regime runs 5 days so I will have this bag for 5 days. Other than getting drowsy from the antinausea, and dizzy (loopy) (drunk feeling) from the first chemo drug I managed pretty well. We'll see what the rest of the day brings. From past experience I think the tougher stuff comes around the 2nd and 3rd weeks, but we'll just take one day at a time. Susan and Julia kept me company (when I wasn't dozing) and continue to take good care of me. Catherine arrives tonight so I'll get the support of the entire family through this weekend.
We continue to have faith and to be optimistic and can't wait to see everyone back in Denver.
Love to all,
Dan
I also received a shot of velcade, am carrying a bag of IV fluids along with a chemo drug, and have a couple of drugs I take orally at home (like the steroids, thalidomide). The regime runs 5 days so I will have this bag for 5 days. Other than getting drowsy from the antinausea, and dizzy (loopy) (drunk feeling) from the first chemo drug I managed pretty well. We'll see what the rest of the day brings. From past experience I think the tougher stuff comes around the 2nd and 3rd weeks, but we'll just take one day at a time. Susan and Julia kept me company (when I wasn't dozing) and continue to take good care of me. Catherine arrives tonight so I'll get the support of the entire family through this weekend.
We continue to have faith and to be optimistic and can't wait to see everyone back in Denver.
Love to all,
Dan
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