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
Sunday, April 19, 2009
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
Wednesday, March 25, 2009
And the Plan Is......
We will be proceeding with the "super beam" high dose chemo next week followed by a stem cell transplant. Beam is just an acronym for 4 of the 9 drugs I'll be getting. We met with Barlogie yesterday and unfortunately, the bone marrow continues to be "packed" with myeloma cells. Although the IGGs have come down to around 3200 that apparently is not significant in light of the bone marrow being so full of myeloma. I've been given another week off to continue to recover and to regain some strength. I start physical therapy tomorrow and otherwise have daily labs until the chemo starts next Wednesday or Thursday. The chemo will be administered over 5 days, after which I'll be given my stem cells back and then we wait for the stem cells to produce new cells to replace the ones destroyed by the chemo. Everything will be done on an outpatient basis, although I'll spend about 5 hours a day at the hospital getting the chemo and being observed for any reactions. Catherine and Julia will be here next weekend which will be a big lift for me as well as Susan. I do wish it felt like we had made some progress over the past 2 months. The most I can say is we've held it at bay, but now it's time to start slicing it up. Not much going on for the next week, so I likely won't be posting much until the chemo begins. Here's hoping you have great spring weather for the next week ---yes, even you North Dakotans who are apparently homebound due to a blizzard. Why did I ever leave that state? Oh, yeh, the weather did play a role in that decision.
Love,
Dan
Love,
Dan
Monday, March 23, 2009
Four Years
Yes, four years ago today I received the diagnosis of multiple myeloma. Faint memories are all that remain of the life before cancer treatment. I have replayed the words my doctor told me in March 2005, "it's incurable, but treatable," a thousand times in my mind and all I can do is smile with disdain. "Treatable?" Infections and broken bones are treatable. The past four years of "treatment" gives new meaning to the word. But here I am, the journey having now placed me in Little Rock, Arkansas. If nothing else we are learning to live with the unexpected. It seems we plan our lives so carefully, work so hard to get somewhere, whether financially, professionally, socially, but our efforts at control are illusory at best. So we learn to accept what life brings us and to seek the joy of each moment, rather than dwell in the fear of what the future might bring. Oh, we have our moments when we look upon others whose lives seem to go along without a hitch; whose plans in fact come to fruition; whose lives seem to work. But amazingly, there is no resentment, no self pity. When dealt this hand, at least for us, it came with acceptance. And so we move forward.
As much as we have learned about ourselves over these past four years, we have learned more about the compassion within so many of you. We have been overwhelmed by the outpouring of love and support for our family from so many people, all over the world. I've never seen myself as someone who was there for people during their times of struggle, because I was mostly too wrapped up in pursuing my goals. Yet, without regard for whether I was there for others or not, it seems the world has reached out and taken us under its wing to nuture us through this struggle. You have made us much better people through your compassion and support. You have taught us what a simple phone call, email, or card can do. You have taught us that we can make a difference in the quality of other's lives, and it takes very little effort, only thoughtfulness. So, those are my thoughts on this 4th anniversary. We are so grateful for everyone who has stood by us, carried us, and cared for us. Our little world is a better place because of you. Thank you.
Love,
Dan
As much as we have learned about ourselves over these past four years, we have learned more about the compassion within so many of you. We have been overwhelmed by the outpouring of love and support for our family from so many people, all over the world. I've never seen myself as someone who was there for people during their times of struggle, because I was mostly too wrapped up in pursuing my goals. Yet, without regard for whether I was there for others or not, it seems the world has reached out and taken us under its wing to nuture us through this struggle. You have made us much better people through your compassion and support. You have taught us what a simple phone call, email, or card can do. You have taught us that we can make a difference in the quality of other's lives, and it takes very little effort, only thoughtfulness. So, those are my thoughts on this 4th anniversary. We are so grateful for everyone who has stood by us, carried us, and cared for us. Our little world is a better place because of you. Thank you.
Love,
Dan
Friday, March 20, 2009
Once More Just For Grins
Met with Barlogie this morning. Within an hour I was having another bone marrow biopsy. I'm not sure I have any hip bone left; but I'm so used to the procedure that I took it without a hitch. The med techs only said, "what are you doing back here? Why is he doing this?" With me, it seems its an integral part of restaging my disease. Either that, or they're coming out with a new jigsaw puzzle---reconstructing Dan's hips.
Not a lot of info to work off during the exam with Barlogie, as I haven't had any testing in a few weeks, so not much new there. I am recovering well from the hospitalization; the blood counts are gradually coming up and the infection index going down. Based on some IGG numbers (3200) and M protein number (2.4) I think I've had a moderate response to this latest chemo--it just took awhile to show up. Anything that will reduce the tumor load for the transplant is good. Barlogie wants me to have some time to recover from the hospitalization and the chemo, which I'm interpreting as perhaps another week or so without any treatment. We see him again next Tuesday.
After I recover I'm pretty sure we will be going into transplant with the Beam treatment--9 high dose chemo drugs administered over 5 days. He says it is the best treatment they have for resistant disease and has optimism about its effectiveness with me. No second transplant. If it doesn't bring me into complete remission, then he would hope it would lower the cancer levels enough that we might squelch them with further pharmaceutical treatment.
The days continue to feel very long (8 hours at the clinic today) and the boredom with a life centered around treatment keeps me thinking of how much I love Colorado and the incredible number of friends we have waiting for us to return to our life there. We love you all and can't wait to see you.
Dan
Not a lot of info to work off during the exam with Barlogie, as I haven't had any testing in a few weeks, so not much new there. I am recovering well from the hospitalization; the blood counts are gradually coming up and the infection index going down. Based on some IGG numbers (3200) and M protein number (2.4) I think I've had a moderate response to this latest chemo--it just took awhile to show up. Anything that will reduce the tumor load for the transplant is good. Barlogie wants me to have some time to recover from the hospitalization and the chemo, which I'm interpreting as perhaps another week or so without any treatment. We see him again next Tuesday.
After I recover I'm pretty sure we will be going into transplant with the Beam treatment--9 high dose chemo drugs administered over 5 days. He says it is the best treatment they have for resistant disease and has optimism about its effectiveness with me. No second transplant. If it doesn't bring me into complete remission, then he would hope it would lower the cancer levels enough that we might squelch them with further pharmaceutical treatment.
The days continue to feel very long (8 hours at the clinic today) and the boredom with a life centered around treatment keeps me thinking of how much I love Colorado and the incredible number of friends we have waiting for us to return to our life there. We love you all and can't wait to see you.
Dan
Wednesday, March 18, 2009
Released
I was finally discharged from the hospital last night; after a week of having my sleep interrupted every 2 hours, and feeling like a caged tiger. For the first 4 days I was in "isolation", which I was told meant I couldn't leave my room. Then the ban was lifted and I was able to walk the halls. Discharging diagnosis: influenza and viral pneumonia. We're now trying to get tests scheduled but so far, no cooperation from the insurance company. Had 2 tests cancelled today due to nonapproval. In the meantime, we will continue to go in daily for lab work, a growth shot, and infusion of antibiotics. The blood counts are gradually coming up and the infection index going down. We'll see Barlogie after we get testing done I suspect. I need as much time as I can get to recover from this episode. In addition to just feeling weak, I dropped 12 pounds over the 10 days. Not a diet I would recommend. Susan has been such a champion through this. How utterly boring for her to choose between sitting in a hospital room or coming back to an emptly apartment. When the hospital food turned my stomach she ran out to find something more palatable. She would come into the room every day and "straighten up" as they weren't very good about that. She ripped a few doctors and nurses about the care I was receiving and has shown despite 30 years in Denver, New York continues to run in her veins. What would I do without my Suz?
We've received some beautiful and thoughtful notes from a number of people, as well as some gorgeous flower arrangements that bring life and light to the apartment. We are so appreciative of all your support and please know we feel as though you continue to carry us.
Love
Dan
We've received some beautiful and thoughtful notes from a number of people, as well as some gorgeous flower arrangements that bring life and light to the apartment. We are so appreciative of all your support and please know we feel as though you continue to carry us.
Love
Dan
Sunday, March 15, 2009
And So It Goes
The weeks continue to present new and unexpected challenges. I survived the two bone marrow biopsies and had my chemo bag removed a week ago Friday, then promptly spiked a high fever and found myself on a different course this past week than aniticipated. We were dealing with daily lengthy visits to the clinic from Saturday through Monday, trying to keep my fevers of 103 to 104 in check. We saw Barlogie on Tuesday and put me in the hospital, and I'm still there. Seems despite a flu shot and tamiflu, I got the flu. Right at the time my white count was as low as it could go, so absolutely no immune system to fight. The biggest concern being not just in shutting down this viral influenza, but also making sure I don't pick up something else while I'm so immune suppressed. Fevers are lower but still pop up around 102 at night. I've been pumped full of more antibiotics, etc than I could recount. Hoping to get out of here by tomorrow, but it could be a couple of more days. Then some recovery time. While the meeting with Barlogie was supposed to discuss the plan going forward, we spent little time on that given my fevers. We'll keep you informed. Thanks for all your good wishes.
Much love to all,
Dan
Much love to all,
Dan
Tuesday, March 03, 2009
Wrestling With the Beast
I'm old enough to know, if it sounds too good to be true, it probably isn't true. I told Susan a few days ago that I was prepared to hear that the latest bone marrow where the myeloma cells dropped from 90% to 5% was an abnormality. The meeting with Dr. Barlogie today confirmed those suspicions. The "numbers" from the last bone marrow (last Friday) don't show any significant improvement from the bone marrow of mid January, ie. 90% myeloma cells. Although not that bad, the numbers are all over the map from the 3 bone marrows since then, leaving him to explain that we're not getting an accurate sampling from the aspirations probably due to the adherent quality of these myeloma cells. As he said, we haven't made much progress and this will call for more "drastic" measures. I think I've been riding this roller coaster so long I can see the ups and downs coming. But before we go to drastic measures, we start with a few days with an increase in the thalidomide, followed by a double bone marrow biopsy on Friday--one on the right and one on the left. (I'll no doubt be waddling like a duck after that procedure). I don't think any of us are expecting some great change in test results.
The more drastic measures probably involve that "Beam bomb", which he so readily dismissed at our last meeting. This is a one time transplant with 9 high dose chemo drugs administered over 5 days. Then I receive my stem cells back and recover from the ordeal. This would be done on an outpatient basis and as he said, "you can handle it." I'm not sure what other choice I have, but my response was simply, "I'll do what I have to do, you do your part." It's that ornerary trial lawyer in me that will carry me through--either that or those strong North Dakota roots. Always the optimist I told Susan on the way home, that at least its only one transplant. We see Barlogie in a week and he will have a plan for us then.
Yeh, this is tough stuff. More mentally than physically. We are forced to draw down into resources we never knew we had, but we continue to discover that our depths have not yet been reached. Susan and I looked at each other as we left the doctor's office and she said, "we'll get through this, we've done it before." Yes, I know that to be true. My stalwart supporter is always at my side.
Never underestimate what you do for us with your unwavering love and support. It's hard being away from home, dealing with this nastiness, and contact with all of you keeps us going. We'll let you know the plan in a week.
Love,
Dan
The more drastic measures probably involve that "Beam bomb", which he so readily dismissed at our last meeting. This is a one time transplant with 9 high dose chemo drugs administered over 5 days. Then I receive my stem cells back and recover from the ordeal. This would be done on an outpatient basis and as he said, "you can handle it." I'm not sure what other choice I have, but my response was simply, "I'll do what I have to do, you do your part." It's that ornerary trial lawyer in me that will carry me through--either that or those strong North Dakota roots. Always the optimist I told Susan on the way home, that at least its only one transplant. We see Barlogie in a week and he will have a plan for us then.
Yeh, this is tough stuff. More mentally than physically. We are forced to draw down into resources we never knew we had, but we continue to discover that our depths have not yet been reached. Susan and I looked at each other as we left the doctor's office and she said, "we'll get through this, we've done it before." Yes, I know that to be true. My stalwart supporter is always at my side.
Never underestimate what you do for us with your unwavering love and support. It's hard being away from home, dealing with this nastiness, and contact with all of you keeps us going. We'll let you know the plan in a week.
Love,
Dan
Wednesday, February 25, 2009
Blessings
Deliveries this week:
--A beautiful bouquet of flowers "from your Denver friends." (Colorado Trial Lawyers)
--Chocolates from our friends in the Netherlands.
--A small pocketbook written and published by a close friend to provide support to all people dealing with a cancer diagnosis, dedicated to Dan. See www.AffirmativeLife.com.
--A box full of goodies, including a banner entitled, "Get Well Dan" and signed by all my friends at the Leukemia and Lymphoma Society.
--Cards and emails from many friends wishing us well.
You continue to lift our spirits. With deep gratitude,
Love,
Dan
--A beautiful bouquet of flowers "from your Denver friends." (Colorado Trial Lawyers)
--Chocolates from our friends in the Netherlands.
--A small pocketbook written and published by a close friend to provide support to all people dealing with a cancer diagnosis, dedicated to Dan. See www.AffirmativeLife.com.
--A box full of goodies, including a banner entitled, "Get Well Dan" and signed by all my friends at the Leukemia and Lymphoma Society.
--Cards and emails from many friends wishing us well.
You continue to lift our spirits. With deep gratitude,
Love,
Dan
Monday, February 23, 2009
Seinfeld Revisited
Have any of you seen the Seinfeld episode where he has all the hassles with his dry cleaners, including seeing someone wearing his shirt that the cleaners lost? Well, we've stepped into television sitcom land here in Little Rock. Two weeks ago we brought 7 shirts to the concierge in our building for laundering, having been told the laundry picked up and delivered to our building. After one week and no laundry we started calling. Yes, the laundry would be delivered, Wednesday, then Thursday, then Friday. No laundry. Finally I go to the laundry today and demand my laundry. They hand over 5 shirts. Where are my other two shirts? Gee, We don't know. They two women who work there go pawing through the hangers looking for my green shirt and brown plaid shirt. No shirts. They must be back at your building. Call the concierge. No shirts. Then we must have included them in someone else's laundry in your building. Call the concierge. She'll check and get back to me. Return home. Inspect my shirts. They're burnt. Yes, burnt. You can see the brown singe marks on the collars and along the buttons in front. Feels like I slept too close to the campfire last night. I think the only thing that is going to make me feel better is some possum porridge or squirrel stew. Having a good time.
Dan
Dan
Friday, February 20, 2009
12 Hours of Not Waiting
Some days things actually get "done" here. Today:
6:45 a.m. arrive for 7:00 a.m. appointment for yet another bone marrow biopsy--#6 since November. I realized last night that my platelets are way low 30,000 (normal being 150,000 or above), and I likely won't be elgible for the biopsy, since platelets are the clotting factor for the blood. So certain am I that I don't take the narcotic this morning that I was sent home with me (fentynal) to be taken 15 to 30 minutes before the biopsy. Why does the patient make this realization? Dont ask me. All it teaches is that you have to be your own advocate. We're told when we get to the clinic that there will be no biopsy because the labs they drew on me yesterday had never been processed but were cancelled---no one knows by whom. They need to know my most recent platelet count before proceeding with the biopsy.
7:00 a.m. back to the infusion room where I cajole one of my favorite nurses to draw my labs, then wait an hour for results--yes, you need platelets as they are now 23,000. Stick around. Platelets are ordered and infused.
9:30 a.m. back to bone marrow for biopsy.
11:00 a.m. back to clinic to receive 2 units of blood, based on this morning's blood draw, some potassium, shot of velcade (chemo drug) and a new chemo bag to carry around for next 14 days.
3:30 p.m. leave infusion room and go home. Decide to take a walk with Susan. During walk she notices rash developing on my face and neck. Call clinic and told to get back there.
5:15 p.m. return to infusion room where six nurses stand around and stare at my face, humming and hawing. Shut down chemo, wait. Reaction begins to subside. Call the doctor and he says he thinks its a reaction to one of the blood products I received. Shoot me up with benadryl and cortizone.
7 p.m. leave infusion room. Rash is gone. Long day.
Highlight of the day was the political argument between Susan (a staunch Democrat) and a patient who had similarly strong views about how every ill this country faces is due to Clinton and Obama. Since he was there because his blood pressure was unduly low I thought Susan was performing a kind of treatment for him, causing his blood pressure to rise. After a long day for everyone, this animated political conversation seemed to lift the spirits of both patients and nurses---all of whom had the wisdom to stay out of the conversation, including me. As we left Susan and the patient both told each other they took none of it personally and rather enjoyed the debate.
Readership on this blog has now ballooned to over 60 visitors a day. Life in Little Rock apparently has some interest for a number of people. How sad. I can see it all now, the new TV reality show: Real Patients of Little Rock (I'm not sure Real Housewives of Little Rock would be a big draw--except for people interested in learning the latest deep frying techniques. Put a southern accent to: "Have you every tasted crispy fried squirrel tail? Why it's delicious.")
We love you all and appreciate your support more than you can imagine.
Dan
6:45 a.m. arrive for 7:00 a.m. appointment for yet another bone marrow biopsy--#6 since November. I realized last night that my platelets are way low 30,000 (normal being 150,000 or above), and I likely won't be elgible for the biopsy, since platelets are the clotting factor for the blood. So certain am I that I don't take the narcotic this morning that I was sent home with me (fentynal) to be taken 15 to 30 minutes before the biopsy. Why does the patient make this realization? Dont ask me. All it teaches is that you have to be your own advocate. We're told when we get to the clinic that there will be no biopsy because the labs they drew on me yesterday had never been processed but were cancelled---no one knows by whom. They need to know my most recent platelet count before proceeding with the biopsy.
7:00 a.m. back to the infusion room where I cajole one of my favorite nurses to draw my labs, then wait an hour for results--yes, you need platelets as they are now 23,000. Stick around. Platelets are ordered and infused.
9:30 a.m. back to bone marrow for biopsy.
11:00 a.m. back to clinic to receive 2 units of blood, based on this morning's blood draw, some potassium, shot of velcade (chemo drug) and a new chemo bag to carry around for next 14 days.
3:30 p.m. leave infusion room and go home. Decide to take a walk with Susan. During walk she notices rash developing on my face and neck. Call clinic and told to get back there.
5:15 p.m. return to infusion room where six nurses stand around and stare at my face, humming and hawing. Shut down chemo, wait. Reaction begins to subside. Call the doctor and he says he thinks its a reaction to one of the blood products I received. Shoot me up with benadryl and cortizone.
7 p.m. leave infusion room. Rash is gone. Long day.
Highlight of the day was the political argument between Susan (a staunch Democrat) and a patient who had similarly strong views about how every ill this country faces is due to Clinton and Obama. Since he was there because his blood pressure was unduly low I thought Susan was performing a kind of treatment for him, causing his blood pressure to rise. After a long day for everyone, this animated political conversation seemed to lift the spirits of both patients and nurses---all of whom had the wisdom to stay out of the conversation, including me. As we left Susan and the patient both told each other they took none of it personally and rather enjoyed the debate.
Readership on this blog has now ballooned to over 60 visitors a day. Life in Little Rock apparently has some interest for a number of people. How sad. I can see it all now, the new TV reality show: Real Patients of Little Rock (I'm not sure Real Housewives of Little Rock would be a big draw--except for people interested in learning the latest deep frying techniques. Put a southern accent to: "Have you every tasted crispy fried squirrel tail? Why it's delicious.")
We love you all and appreciate your support more than you can imagine.
Dan
Wednesday, February 18, 2009
Hard to Believe
Nervous. Meeting with Barlogie today. Last week we were told my response to the chemo, based on IGG levels, was not great. Already met one of the transplant nurses who told me that I would definitely get sick from the side effects of the high dose chemo used in transplant. Barlogie walks in, warmly hugging Susan and shaking my hand. Sits at the computer and begins a review of the data. Oh, so much data. I glance over. He is reviewing a bar chart of the IGGs. Not a great drop. I had so much trouble accepting what we were told in January before I started the first round of chemo that I never blogged this info: My cancer levels, i.e., the degree of cancerous plasma cells in my bone marrow had jumped to 90%, from 10% to 15% in November. I was so frustrated that delays in scheduling my trips here and treatment left me untreated for almost 2 1/2 months and the myeloma seemed to be out of control. Barlogie speaks. "This is hard to believe." I look at Susan, she at me. Oh shit, now what. "Hmmmm," he says. Then, "your bone marrow shows your cancerous plasma cells have dropped to 5 %." "This is hard to believe."
He starts flipping through the paper file in front of him, which is now about 6 inches thick. I'm sure he will find a way to take back my rising spirits. "No," he says. "Dan, look at this." He shows me a graph of spicules from the bone marrow biopsy in January and compares it to the biopsy of last week. The difference is obvious. "This is excellent." "This is proof." Then, he sits back, puts his finger to his lips, "what to do, what to do", flipping through more of my data. He lurches forward, pulls out an order sheet and begins to write. "I think we'll do another round of chemo, this time for 14 days, and some new drugs, along with some of the same ones." I point at him and say, "I'm no doctor, but I agree. My intuition told me this is what would be best for me." This was one of the many questions I had written down to ask me---why not another round of chemo. He reviews the drugs with me. I ask, "and then are we looking at a transplant." He responds, "I'm not sure. We'll have to see how you respond to this next round." We have moved from the presumption of a tandem transplant to perhaps no transplant!
Relief does not describe the massive weight that has lifted from Susan's and my shoulders. We know this is not the end of this disease, this process, or my treatment. But we so desperately want some up days to keep us going. Last week was such a low point, with the doctor (not Barlogie), telling us I was now in the high risk category (Barlogie says definitely not) and that I would most probably be going right into transplant and would be given one of the harsher high dose chemo regimes. One that I had unerstood was used mostly with high risk people. I asked Barlogie about that regime. He said definitely not for me at this time.
Another day in the life of a person dealing with this nastiness. Today, not so bad. I never thought I would have that response to a prescription of 14 days of constant (yes round the clock) chemo, but that is how I feel right now.
Last weekend we drove to Tyler, Texas to visit my brother Mike and his wife Penny. We had the greatest time. First just getting out of the treatment mindset was so refreshing (30 days of mostly 2 visits a day to the clinic/hospital). And being able to do it in the comfort of their beautiful home, with family. They took such good care of us with meals, manicures (no, not for me), and idle conversation. We came back refreshed. Thank you Mike and Penny.
Catherine will be joining us this weekend. We are so excited. More so knowing that I won't be in the transplant unit of the hospital. We might even get to go out for dinner (I continue to be the optimist).
And thank you to everyone for your continuing support. As we get battered around you provide us with strength through your love and support. We continue to be so grateful.
Much love,
Dan
Addendum:
An insight into my own disbelief at the tremendous response to the chemo: I awoke this morning and thought maybe they had mistakeningly put someone else's bone marrow report in my file. I checked my copy. No it's mine. It is true. Also, stem cell collection is very good in Barlogie's view. With the 16 million I have (10 mil from Denver) we've got enough for 4, maybe 5 transplants. Let's keep them on ice, I say. Despite the runup in the numbers while waiting for treatment, based on other data, Barlogie does not believe my disease is particularly aggressive or angry. And finally, for you true biologists, (yes that would be you Molly) technically speaking the 90% and 5% numbers referenced above are not "cancerous". The tests measure bone marrow cellularity and then the percent of plasma cells within both the bone marrow and the aspirate drawn from the bone marrow. So my celluarity in January was 97% and is now 50%. 50% is about normal. The plasma cells were 90% and are now 5%. That is where the cancer resides--in the plasma cells--we all have plasma cells, mine just produce too much of the IGG antibody. Hence they look at IGG levels as an indicator of the cancer levels. As I've said in earlier posts, the biology of this disease escapes me. I spent way too much time staring at the high school girls in my biology class and not reading the books to be able to understand all this. But, it's all still good.
He starts flipping through the paper file in front of him, which is now about 6 inches thick. I'm sure he will find a way to take back my rising spirits. "No," he says. "Dan, look at this." He shows me a graph of spicules from the bone marrow biopsy in January and compares it to the biopsy of last week. The difference is obvious. "This is excellent." "This is proof." Then, he sits back, puts his finger to his lips, "what to do, what to do", flipping through more of my data. He lurches forward, pulls out an order sheet and begins to write. "I think we'll do another round of chemo, this time for 14 days, and some new drugs, along with some of the same ones." I point at him and say, "I'm no doctor, but I agree. My intuition told me this is what would be best for me." This was one of the many questions I had written down to ask me---why not another round of chemo. He reviews the drugs with me. I ask, "and then are we looking at a transplant." He responds, "I'm not sure. We'll have to see how you respond to this next round." We have moved from the presumption of a tandem transplant to perhaps no transplant!
Relief does not describe the massive weight that has lifted from Susan's and my shoulders. We know this is not the end of this disease, this process, or my treatment. But we so desperately want some up days to keep us going. Last week was such a low point, with the doctor (not Barlogie), telling us I was now in the high risk category (Barlogie says definitely not) and that I would most probably be going right into transplant and would be given one of the harsher high dose chemo regimes. One that I had unerstood was used mostly with high risk people. I asked Barlogie about that regime. He said definitely not for me at this time.
Another day in the life of a person dealing with this nastiness. Today, not so bad. I never thought I would have that response to a prescription of 14 days of constant (yes round the clock) chemo, but that is how I feel right now.
Last weekend we drove to Tyler, Texas to visit my brother Mike and his wife Penny. We had the greatest time. First just getting out of the treatment mindset was so refreshing (30 days of mostly 2 visits a day to the clinic/hospital). And being able to do it in the comfort of their beautiful home, with family. They took such good care of us with meals, manicures (no, not for me), and idle conversation. We came back refreshed. Thank you Mike and Penny.
Catherine will be joining us this weekend. We are so excited. More so knowing that I won't be in the transplant unit of the hospital. We might even get to go out for dinner (I continue to be the optimist).
And thank you to everyone for your continuing support. As we get battered around you provide us with strength through your love and support. We continue to be so grateful.
Much love,
Dan
Addendum:
An insight into my own disbelief at the tremendous response to the chemo: I awoke this morning and thought maybe they had mistakeningly put someone else's bone marrow report in my file. I checked my copy. No it's mine. It is true. Also, stem cell collection is very good in Barlogie's view. With the 16 million I have (10 mil from Denver) we've got enough for 4, maybe 5 transplants. Let's keep them on ice, I say. Despite the runup in the numbers while waiting for treatment, based on other data, Barlogie does not believe my disease is particularly aggressive or angry. And finally, for you true biologists, (yes that would be you Molly) technically speaking the 90% and 5% numbers referenced above are not "cancerous". The tests measure bone marrow cellularity and then the percent of plasma cells within both the bone marrow and the aspirate drawn from the bone marrow. So my celluarity in January was 97% and is now 50%. 50% is about normal. The plasma cells were 90% and are now 5%. That is where the cancer resides--in the plasma cells--we all have plasma cells, mine just produce too much of the IGG antibody. Hence they look at IGG levels as an indicator of the cancer levels. As I've said in earlier posts, the biology of this disease escapes me. I spent way too much time staring at the high school girls in my biology class and not reading the books to be able to understand all this. But, it's all still good.
Thursday, February 12, 2009
Four Words You Don't Want to Hear
Lying on the table in the operating room, awaiting the removal of one catheter for substitution of a smaller one. I am fully conscious. My head is turned to one side, sterile gauze across my face. I realize I have a resident or trainee working on me, as I hear another voice instructing him on the procedure. Not much I can do now. The resident is told to remove the catheter. I feel a pull. Then, I hear the resident say: "uh-oh, that's not good." Warm liquid oozing down my neck and onto my shoulders. Two hands quickly start to press hard on my jugular vein. No one is speaking. Nurses are activated, moving about in the operating room. Handing the surgeon gauze or something else. I can only hear, not see. Hands continue to press. 10 minutes? 15 minutes? I don't know. Finally I speak, "How are you going to stop the bleeding, doctor?" The other voice is now at my side, and I realize it is his hands that are on my vein, pushing, pushing. "We'll continue to use pressure. We've removed a larger catheter, your platelets are low, you're feeling some blood on you." I wait. Pressure continues. A few minutes later he repeats himself. I start to shake. I'm either cold, nervous, or both. "Get him a blanket." I feel a nurse's hand grip mine, stroking my arm, calming me. The pressure continues. Finally, he releases. A pause. Some wiping on my skin. The new catheter is now placed by the steadier hand of the more experienced surgeon. The clean up begins, warm cloths on my skin. Sutures. I feel myself relax. A pat on the shoulder from the doctor. "You're a good patient." I respond: "It's better to be a good doctor."
I get off the table. Nurses won't make eye contact with me, but they are looking at each other with expressions of frustration, fear, disapproval--I'm not sure. No one is speaking, unlike the other times I have been through this. No question this was not standard procedure. I want to get out of here. As I am escorted out of the OR, I pass the doctor who I hear instructing the resident on how to properly do the procedure he just botched. In another time, perhaps 5 years ago before all this nastiness began I would have confronted them with a "what happened in there." I don't have the energy. I stop in the restroom. I see blood oozing from beneath the gauze. A return to the Pre op. A change of dressing--15 minutes after the procedure. I am assured the bleeding has stopped.
Yes, that was my yesterday. Today, 7 a.m. I check in for a bone marrow biopsy. I ask, "who will be doing the procedure on me today, because I will not have an inexperienced hand on me today." I am assured my tech is very experienced. He is. The bone marrow biopsy goes as smoothly as the procedure can.
This is my week off. Nothing more to say. The journey continues.
Dan
I get off the table. Nurses won't make eye contact with me, but they are looking at each other with expressions of frustration, fear, disapproval--I'm not sure. No one is speaking, unlike the other times I have been through this. No question this was not standard procedure. I want to get out of here. As I am escorted out of the OR, I pass the doctor who I hear instructing the resident on how to properly do the procedure he just botched. In another time, perhaps 5 years ago before all this nastiness began I would have confronted them with a "what happened in there." I don't have the energy. I stop in the restroom. I see blood oozing from beneath the gauze. A return to the Pre op. A change of dressing--15 minutes after the procedure. I am assured the bleeding has stopped.
Yes, that was my yesterday. Today, 7 a.m. I check in for a bone marrow biopsy. I ask, "who will be doing the procedure on me today, because I will not have an inexperienced hand on me today." I am assured my tech is very experienced. He is. The bone marrow biopsy goes as smoothly as the procedure can.
This is my week off. Nothing more to say. The journey continues.
Dan
Tuesday, February 10, 2009
Transplant on the Horizon
I finished the stem cell collection today, then met with the doctor (not Barlogie) mainly to get orders for the next round of testing. We have some confusion regarding stem cell collection, but it appears we're around 5.2 million cells collected. They've requested the 10 million I have in Denver so we'll be at 15 million. And more collection could possibly occur in the future, although after each transplant it becomes more difficult.
Tomorrow and Thursday I go through another round of testing---PET scan, MRI, bone marrow biopsy and removal of one port and installation of another (they use a different port for stem cell collection). Then a week's break to recover and we meet with Barlogie in a week to discuss the next phase. I need the break as the fatigue seems to build. I'm most relieved that I won't have any more shots for awhile. My poor belly is a bit bruised, but I am thankful I brought some extra poundage. That spare tire provided a cushion. I always knew there was a reason I didn't have six pack abs.
The chemo regime brought the IGGs down to around 4500 from 6500. Not a great response, but we are reminded that IGGs are not the definitive measure, thus the need for more testing. We think we'll probably move right into the first transplant after the week's break; which was the plan from the beginning. It wouldn't surprise me if the planning, paperwork, etc. takes another week or more before the transplant. But tentatively I'm looking at late February.
We are saddend by Julia's departure tomorrow as she has been great assistance and company during these long days--even with her broken hand. She has become something of a celebrity in the infusion room with her broken hand, but she takes the ribbing in stride. We are buoyed, however, that Catherine will be coming for the weekend in about 10 days. It is hard to express the depth of gratitude I have for these three beautiful women in my life who continue to spend so much time in support of me during these past years. Their hearts are huge. I have often said one of the most difficult aspects of this disease and treatment is the burden it places on those most close to me. I would wish for all of them that their lives could be more carefree. But I am very grateful, for they keep me going.
We moved to a different apartment, after too many hassles and frustrations with the inadequate furnishings of the first apartment. It is the same building, but here is the new address: 300 E. Third St., #1201, Little Rock, AR 72201. Thank you everyone for the cards, emails, gifts, good wishes, and prayers. You continue to lift our spirits.
Much love to all,
Dan
Tomorrow and Thursday I go through another round of testing---PET scan, MRI, bone marrow biopsy and removal of one port and installation of another (they use a different port for stem cell collection). Then a week's break to recover and we meet with Barlogie in a week to discuss the next phase. I need the break as the fatigue seems to build. I'm most relieved that I won't have any more shots for awhile. My poor belly is a bit bruised, but I am thankful I brought some extra poundage. That spare tire provided a cushion. I always knew there was a reason I didn't have six pack abs.
The chemo regime brought the IGGs down to around 4500 from 6500. Not a great response, but we are reminded that IGGs are not the definitive measure, thus the need for more testing. We think we'll probably move right into the first transplant after the week's break; which was the plan from the beginning. It wouldn't surprise me if the planning, paperwork, etc. takes another week or more before the transplant. But tentatively I'm looking at late February.
We are saddend by Julia's departure tomorrow as she has been great assistance and company during these long days--even with her broken hand. She has become something of a celebrity in the infusion room with her broken hand, but she takes the ribbing in stride. We are buoyed, however, that Catherine will be coming for the weekend in about 10 days. It is hard to express the depth of gratitude I have for these three beautiful women in my life who continue to spend so much time in support of me during these past years. Their hearts are huge. I have often said one of the most difficult aspects of this disease and treatment is the burden it places on those most close to me. I would wish for all of them that their lives could be more carefree. But I am very grateful, for they keep me going.
We moved to a different apartment, after too many hassles and frustrations with the inadequate furnishings of the first apartment. It is the same building, but here is the new address: 300 E. Third St., #1201, Little Rock, AR 72201. Thank you everyone for the cards, emails, gifts, good wishes, and prayers. You continue to lift our spirits.
Much love to all,
Dan
Saturday, February 07, 2009
Reluctant stem cells
First things first, I've lost all my hair.
We are now deep into stem cell collection. Having survived the chemo regime I was optimistic that I would breeze through stem cell collection and be offered a week or two break before the next phase starts. Such is not the case. Stem cell collection has proved more difficult than expected--due to the fact that I've had a previous transplant. Prior to my first transplant they harvested 20 million cells in one day, using 10 million for the transplant (a decision that has not been well received here, as they say you only need a minimum of 2 to 3 million for a transplant--but 4 to 5 million is preferred. So why was I given 10 million?) Anyway, my first 2 days of collection only yielded 1.4 million cells. So I became the lucky recipient of a new drug--mozibil--which was only approved by the FDA last month, after clinical trials here in Arkansas. It helps me to produce stem cells. That shot, too, goes in the gut and brings a few of the notorious chemo side effects (even though it is not chemotherapy). The drug costs......$20,000 a shot! I'm told insurance pays because the drug usually reduces the number of days on apheresis (stem cell collection). Anyway, they collected 1.8 million yesterday, bringing my total to 3.2 million. I'm limited to 4 shots, so I should be done by Tuesday and hopefully will be above 6 million in stem cells, which will probably be enough for the double transplant.
Life in Little Rock continues to be slow. I'm pretty exhausted so the pace is of no consequence to me. I think it must drive Susan crazy. We arrive at the clinic by 7 a.m., finish apheresis around noon, go home for a couple of hours and return to the infusion room, usually to get a transfusion of red cells or platelets, and 3 shots to the stomach. Susan and Julia alternate in taking me and sitting there as they do their work on me.
Oh, and then there is Julia's broken hand. While Suz and I were at the clinic this week and Julia was at the apartment she managed to break her hand. Yes, her hand. She claims she accidentally it on a chair. Whatever. She is now in a cast. Her trip back to Denver will be a bit of a challenge. Oh, and then there is the independent study she will be doing in Belize this month. She is upset at the inconvenience she will have traveling to Belize and trying to snorkel with a cast on. But, we can only laugh. And that seems to get us through.
The idea of spending months here in Little Rock is more than we can handle. So we take one day at a time. There are moments, there are days, and even weeks, when life is everything you could ever hope for. We dwell in those and allow the more difficult times to slip through and not grab us. The message we continually receive here is one of hope, from the patients and the nursing staff. They constantly tell us, "we don't give up." It is very humbling to have so many people committed to caring for you, for other patients and for the eradication of this disease. These people have huge hearts and they envelope us every day with care. We continue to be grateful for all the goodness we receive and we send our love to all of you.
Dan
We are now deep into stem cell collection. Having survived the chemo regime I was optimistic that I would breeze through stem cell collection and be offered a week or two break before the next phase starts. Such is not the case. Stem cell collection has proved more difficult than expected--due to the fact that I've had a previous transplant. Prior to my first transplant they harvested 20 million cells in one day, using 10 million for the transplant (a decision that has not been well received here, as they say you only need a minimum of 2 to 3 million for a transplant--but 4 to 5 million is preferred. So why was I given 10 million?) Anyway, my first 2 days of collection only yielded 1.4 million cells. So I became the lucky recipient of a new drug--mozibil--which was only approved by the FDA last month, after clinical trials here in Arkansas. It helps me to produce stem cells. That shot, too, goes in the gut and brings a few of the notorious chemo side effects (even though it is not chemotherapy). The drug costs......$20,000 a shot! I'm told insurance pays because the drug usually reduces the number of days on apheresis (stem cell collection). Anyway, they collected 1.8 million yesterday, bringing my total to 3.2 million. I'm limited to 4 shots, so I should be done by Tuesday and hopefully will be above 6 million in stem cells, which will probably be enough for the double transplant.
Life in Little Rock continues to be slow. I'm pretty exhausted so the pace is of no consequence to me. I think it must drive Susan crazy. We arrive at the clinic by 7 a.m., finish apheresis around noon, go home for a couple of hours and return to the infusion room, usually to get a transfusion of red cells or platelets, and 3 shots to the stomach. Susan and Julia alternate in taking me and sitting there as they do their work on me.
Oh, and then there is Julia's broken hand. While Suz and I were at the clinic this week and Julia was at the apartment she managed to break her hand. Yes, her hand. She claims she accidentally it on a chair. Whatever. She is now in a cast. Her trip back to Denver will be a bit of a challenge. Oh, and then there is the independent study she will be doing in Belize this month. She is upset at the inconvenience she will have traveling to Belize and trying to snorkel with a cast on. But, we can only laugh. And that seems to get us through.
The idea of spending months here in Little Rock is more than we can handle. So we take one day at a time. There are moments, there are days, and even weeks, when life is everything you could ever hope for. We dwell in those and allow the more difficult times to slip through and not grab us. The message we continually receive here is one of hope, from the patients and the nursing staff. They constantly tell us, "we don't give up." It is very humbling to have so many people committed to caring for you, for other patients and for the eradication of this disease. These people have huge hearts and they envelope us every day with care. We continue to be grateful for all the goodness we receive and we send our love to all of you.
Dan
Saturday, January 31, 2009
Coming Out of the Fog
The last couple of days I've seen an uptick in energy, slept less, and am hoping we are nearing stem cell collection. Blood chemistries were a bit whacked out this week, requiring a couple of transfusions and multiple infusions of potassium and magnesium. I'm told the bone marrow uses those elements to produce cells, so that is probably why mine are depleted. My white cell count seems to be rising, albeit slowly, but I'm hopeful that by next Tuesday or so we'll see a jump and they will want to collect cells, thereby ending the shots in the stomach, which aren't so painful, but I wince every time I'm subjected to it. This morning's nurse said she thought we would definitely be collecting sometime this week. We see the doctor on Monday and I should get an update on the status of the cancer levels and maybe an indication whether I'm likely to have to go through another chemo regime before transplant.
Hair loss is setting in again. Yes, I know, I've had this condition since I was about 26 years old, but clumps of hair are now dropping off and within a couple of weeks the bald dome will reemerge. I'm told that look is now "hot". Can't wait to be "hot"!
Little Rock continues to be Little Rock. We miss Denver and our friends.
Love,
Dan
Hair loss is setting in again. Yes, I know, I've had this condition since I was about 26 years old, but clumps of hair are now dropping off and within a couple of weeks the bald dome will reemerge. I'm told that look is now "hot". Can't wait to be "hot"!
Little Rock continues to be Little Rock. We miss Denver and our friends.
Love,
Dan
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