So there was no surgery this morning.
I got up painfully early and went in to make sure my platelets were still in good shape. While there, I told them go ahead and run one last set of labs. Why not! Blood for everybody, on the house! :)
I left the infusion center and went over to the outpatient surgery center on the 4th floor of the hospital where I've had all the bone marrows done before. They couldn't find us in their ledger, and referred us to a different surgery clinic around the corner where kidney transplants are done. Hmm.
Anyhow, this was the right place. They had me on the ledger there. We waited, and I was called, and went back.
That's when the RN said "just so you know, you're not having surgery today."
Turns out I was just there to meet with the doctor. This was mildly irritating (to say the least) since we have carefully scheduled our remaining few days here. I went to the trouble of having a platelet infusion that wasn't necessary, for one thing! My blood pressure, which was 117 over 82 in the clinic, suddenly was 140 over 90. Grrrrr!!!!
We then met with the doctor, a fairly young guy who was nice enough. Except he started off by telling me how much higher the risk of infection was with Myeloma patients, and then went through the list of all the things that could go wrong with a portacath. Do I want to hear that carrying a golf bag could give me a pulmonary embolism? No, I do not.
It was a pretty depressing conversation, to tell you the truth. They have to place this thing deep under the skin and cut through muscle, etc. It's closer to a hernia operation than a line placement, actually. I left pretty ambivalent about whether or not to do it after all. I figured it might be easier to do nothing, just have the one line removed, and then maybe in a few weeks try maintenance and see how bad it is trying to let them just do the IVs.
As I was ruminating on this, Kristen, the APN from the infusion center, called. My CRP has come down, which is good. My uric acid is coming down thanks to the Allopurinol tablets that I was prescribed. Also good. My platelets were 81 post infusion yesterday and 84 this morning, so they held and increased a bit. I am sure I will be over 75 tomorrow, so that should be fine.
The M-spike, despite the smaller hump size in the graphs I posted last night, remains at trace levels. I'm not concerned.
Kristen did say that she has never encountered anybody with a portacath who regretted having it placed. That helped out a bit. I'm going to have dinner with BB and BJ again (BB's wife is out of town or she would be joining us) as a farewell meal, and I'll see what he thinks about the likelihood of complications and whether or not I should have this done here versus just having the line pulled and then dealing with the portacath at some point in the future.
As it stand now, I have surgery tomorrow morning at 9AM, and then a discharge appointment with BB at 3PM. I will go into the infusion center at 7AM -- might as well get one more lab out of me for kicks, plus they will run cancer markers on it and it's the last chance to see the M-spike before we leave town.
I'll post an update.
I had a long conversation today with a gentleman from Los Angeles whose wife, age 61, has been through Myeloma hell for about a year. She began treatment under Dr. JB -- the guy who doesn't do any transplants -- in LA and it didn't work out. She got very ill, and then was looking into Dr. SF at City of Hope but had to be hospitalized. She managed to recover against all odds, and part of the protocol was a single transplant by Dr. RV, another one of the folks that I was going to consult with back in Los Angeles long ago. The single transplant didn't take either, so this couple finds themselves here. Her husband actually just took out a lease on the condo unit on the floor directly beneath us.
At any rate, I had a great conversation with this gentleman -- he and his wife have the exact right attitude to bring to this fight. It feels good to be helping others -- as I said, I am fortunate that I have fared as well as I have, such that I can start turning some of my attention from managing my own disease to helping others manage theirs.
The apartment has been cleaned out...our car is loaded onto a truck and being sent back to California...and we fly back in Friday. As I said goodbye to the friends we have made among the care providers and fellow patients, I can't help but think back to high school graduation -- it's that same type of feeling. Except, frankly, high school was worse in some ways than cancer. :)
More news tomorrow, I am sure. And I should sleep well tonight as I'm dead on my feet. :)
Wednesday, July 29, 2009
The future of this blog...
Just a very quick note. The end of my primary therapy does not mean the end of this blog. Far from it.
After the end of this week, I will probably post with less frequency. There won't be daily labs, for one thing. My primary therapy is over and my side effects will hopefully dwindle away. And you are probably all getting sick of me anyway. :)
However, I won't be abandoning this blog! I will be posting ongoing updates as I progress through maintenance therapy, my future testing, my visits back to see BB, etc. Perhaps updates will be bi-weekly or weekly rather than multiple times a week, but they weill be there! Meanwhile I have been asked by three separate cancer websites to be a contributor and I am working through the details of that. I'll post some material on those sites and they will direct back here for more information. More importantly, I have some ideas about how to make this blog more readily available to people with a new Myeloma diagnosis.
I want to thank, again, each and every one of you that reads this. I have been very fortunate to have been contacted by many of you, and many others who don't comment here, and I know that by telling my story, people have found information about their disease, perspectives on treatments, insight on side effects, and one or two laughs along the way. I'm not solving world hunger here but in a very small way I think I have been able to help some people with this disease, and it is tremendously gratifying to do so. I am blessed and very thankful for the opportunity to do so.
Okay. Ninety minutes to go before I was supposed to get up this morning in preparation for my surgery. I think I'll try to get a little more sleep before the alarm. Nighty night!
After the end of this week, I will probably post with less frequency. There won't be daily labs, for one thing. My primary therapy is over and my side effects will hopefully dwindle away. And you are probably all getting sick of me anyway. :)
However, I won't be abandoning this blog! I will be posting ongoing updates as I progress through maintenance therapy, my future testing, my visits back to see BB, etc. Perhaps updates will be bi-weekly or weekly rather than multiple times a week, but they weill be there! Meanwhile I have been asked by three separate cancer websites to be a contributor and I am working through the details of that. I'll post some material on those sites and they will direct back here for more information. More importantly, I have some ideas about how to make this blog more readily available to people with a new Myeloma diagnosis.
I want to thank, again, each and every one of you that reads this. I have been very fortunate to have been contacted by many of you, and many others who don't comment here, and I know that by telling my story, people have found information about their disease, perspectives on treatments, insight on side effects, and one or two laughs along the way. I'm not solving world hunger here but in a very small way I think I have been able to help some people with this disease, and it is tremendously gratifying to do so. I am blessed and very thankful for the opportunity to do so.
Okay. Ninety minutes to go before I was supposed to get up this morning in preparation for my surgery. I think I'll try to get a little more sleep before the alarm. Nighty night!
Confirmation on the reimmunization issue
In addition to BB saying no reimmunization was necessary, I spoke with SF at City of Hope to get a second opinion on it. At the prestigious multi-cancer center Southwest Oncology Group, BB is the Myeloma czar and SF is the transplant czar. SF oversees transplant protocols for serveral types of cancer, not just Myeloma. He told me he does not reimmunize after an autologous transplant. There are tests he will occasionally run to check levels of antibodies in the blood, and in rare cases he might intervene, but these are definitely the exception and not the rule.
He did mention that part of what is relied upon is "herd" immunity -- that is, the people around us are immunized against this so the likelihood of contracting the disease is, in his words, "very, very, very low." I advised that in my herd at home I have a calf about to turn two and he will be getting various immunizations. These are, I am told, not a problem. The only live virus used is for the polio vaccine which is administered orally and excreted in the stool, so as long as I stay away from dirty diapers (HURRAY! A MEDICAL EXCUSE!!!) I should be fine.
The one issue that does keep coming back is Chicken Pox. I now recall that Acyclovir, the antiviral that I have been on almost constantly since beginning therapy, is designed to keep this at bay. I will probably be on this for a very long time, which is probably just fine. But I will ask BB about this, as well as about international travel that could be required for work -- or even meeting with people from other countries. If I have a meeting with a room full of people from a country that requires special immunization, do I need to be concerned?
I want to also thank my beloved blog followers for letting me know of a couple of reimmunzation stories, including one posted here in the comments that speaks (at least anecdotally if not with statistical backup) of the cancer coming back after the immune system surges in response to the vaccinations. NO THANKS!!!!!
He did mention that part of what is relied upon is "herd" immunity -- that is, the people around us are immunized against this so the likelihood of contracting the disease is, in his words, "very, very, very low." I advised that in my herd at home I have a calf about to turn two and he will be getting various immunizations. These are, I am told, not a problem. The only live virus used is for the polio vaccine which is administered orally and excreted in the stool, so as long as I stay away from dirty diapers (HURRAY! A MEDICAL EXCUSE!!!) I should be fine.
The one issue that does keep coming back is Chicken Pox. I now recall that Acyclovir, the antiviral that I have been on almost constantly since beginning therapy, is designed to keep this at bay. I will probably be on this for a very long time, which is probably just fine. But I will ask BB about this, as well as about international travel that could be required for work -- or even meeting with people from other countries. If I have a meeting with a room full of people from a country that requires special immunization, do I need to be concerned?
I want to also thank my beloved blog followers for letting me know of a couple of reimmunzation stories, including one posted here in the comments that speaks (at least anecdotally if not with statistical backup) of the cancer coming back after the immune system surges in response to the vaccinations. NO THANKS!!!!!
Pictures of M-spikes and matchstick men...and some random thoughts on a few other things...
Another fairly sleepless night. I attribute this to (1) excitement over my final surgical procedure this AM, removing my central line and replacing it with a portacath, (2) excitement over my primary treatment coming to a close, and (3) excitement over declining M-spike and approaching complete remission.
Labs yesterday were good. White count up to the mid 5s, so my immune system is back in place. Hemoglobin inching up. Platelet recovery, now that it is no longer inhibited by the growth factor, is happening as well -- they went from 26 to 50 overnight. They need to be 75 this AM in order to proceed with the procedure, so I received an infusion of platelets yesterday late afternoon just to be safe.
I will go in at 7AM this morning for what should be my final trip to the infusion center other than the seven followup visits I will have over the coming three years. I'm going to try to take a bunch of pictures today to give some life to the stories I've been telling on this blog over the past six months. Then at 8AM I will go to the outpatient center to have the line removel and portacath placement done under conscious sedation. One more victory -- it took a little less complaining this time, too!
We have become accustomed to basically daily monitoring of virtually every aspect of my blood. It will take some adjustment to not having the comfort of seeing that data with frequency. I am sure that during maintenance I will be getting information a couple of times a month, but this seems like an extraordinary delay in between readings. We shall have to get used to it. It will be easier to do so if I am in complete remission and we don't anticipate anything coming back.
Which brings me to another reason for my inability to sleep. We got the labs back from Monday, and the M-spike data hasn't been interpreted yet. But they do have a visual of all the protein in my blood passed through electrophoresis, which means a current is run through the blood and that current causes the different proteins to separate for quantification.
Here's what one of these looks like, from way back on February 27th. The X-axis (going from left to right across the bottom) are all the different types of proteins in my blood. The Y-axis (going from bottom to top on the left hand side) is the volume (how much) of that type of protein is present.
You will note a couple of things here. There is a large spike on the left. This spike is normal and everybody has it in their blood. I'm not sure exactly what it is (I suspect it is Albumin), but it's not the problem. Nor are the little bumps near the bottom. The problem is the GIANT spike on the right. This is the evil M-spike, in all its full-raging cancerous glory. This is the visual representation of all the little monoclonal proteins -- ones that serve no purpose on the blood since they are defective -- produced by cancerous plasma cells. The reading here is 5.5 g/dl of blood -- that is, the M-spike is 5.5
Now, here's what the graph looked like as of July 16th, about 10 days ago, when we first got the reading of "trace" levels. You will note, the spike on the right has declined tremendously.
The other proteins in the blood fluctuate but don't change too wildly. You can compare the size of the spike on the right to the other spike on the left -- the normal spike -- to see how much it has changed in five months of therapy. The bad protein spike has gone from more than twice the size of the normal spike to about 1/7th the size of it.
Here's where things get tantalizingly interesting and what is keeping me up tonight with anticipation. We're still waiting on the actual numbers...you can see in both the photo below and the first one above that some of the results are noted as "in lab" on the sheet, whereas the actual results are shown in the second photo of the series (TR, meaning trace, with the explanation below). The chart below is from the analysis of my blood on July 27th.
Now I dunno if this is zero, or trace still, but the size of that hump is less than the size of it just 10 days ago. So regardless of what the quantitative reading is when it comes back, it's moving down! This despite the fact that my active therapy ended several days before the draw. So that's excellent.
I was told by SF that he would be shocked if my maintenance therapy didn't wipe out what little was left pretty soon. I had joked with BB that whatever cancer cells were left were like the two Japanese soldiers left on a tiny island who never received word that WW2 was over. Sooner or later they will get with the program. Strictly speaking, that begins the 72-month count. Recall that per BB's data, six years of sustained complete remission equals a cure. Few low risk patients (less than 20%) lose CR once it is achieved.
Okay, now that I've gotten a few more pictures from my iPhone to this blog, I did move two more over for comic effect.
First, a celebrity sighting...of sorts. :) Any of you see The Curious Case of Benjamin Button, based on the F. Scott Fitzgerald short story about the man born elderly who grows younger as he ages? Here's a well-known stlll from the film.
Yesterday, at the sushi restaurant we like here, I'm pretty sure we saw this guy.
Okay...okay!!! (your humble narrator is now ducking tomatoes and boos and hisses). Sorry! But c'mon it IS pretty funny, right? :)
I will leave you with the type of dessert menu only found in this part of the country. Please note that a "Moonpie" was the primary source of food for the hero in the videogame "Redneck Rampage."
We passed on everything -- particularly the Moonpie and the Bacon Ice Cream. Barf.
Labs yesterday were good. White count up to the mid 5s, so my immune system is back in place. Hemoglobin inching up. Platelet recovery, now that it is no longer inhibited by the growth factor, is happening as well -- they went from 26 to 50 overnight. They need to be 75 this AM in order to proceed with the procedure, so I received an infusion of platelets yesterday late afternoon just to be safe.
I will go in at 7AM this morning for what should be my final trip to the infusion center other than the seven followup visits I will have over the coming three years. I'm going to try to take a bunch of pictures today to give some life to the stories I've been telling on this blog over the past six months. Then at 8AM I will go to the outpatient center to have the line removel and portacath placement done under conscious sedation. One more victory -- it took a little less complaining this time, too!
We have become accustomed to basically daily monitoring of virtually every aspect of my blood. It will take some adjustment to not having the comfort of seeing that data with frequency. I am sure that during maintenance I will be getting information a couple of times a month, but this seems like an extraordinary delay in between readings. We shall have to get used to it. It will be easier to do so if I am in complete remission and we don't anticipate anything coming back.
Which brings me to another reason for my inability to sleep. We got the labs back from Monday, and the M-spike data hasn't been interpreted yet. But they do have a visual of all the protein in my blood passed through electrophoresis, which means a current is run through the blood and that current causes the different proteins to separate for quantification.
Here's what one of these looks like, from way back on February 27th. The X-axis (going from left to right across the bottom) are all the different types of proteins in my blood. The Y-axis (going from bottom to top on the left hand side) is the volume (how much) of that type of protein is present.
You will note a couple of things here. There is a large spike on the left. This spike is normal and everybody has it in their blood. I'm not sure exactly what it is (I suspect it is Albumin), but it's not the problem. Nor are the little bumps near the bottom. The problem is the GIANT spike on the right. This is the evil M-spike, in all its full-raging cancerous glory. This is the visual representation of all the little monoclonal proteins -- ones that serve no purpose on the blood since they are defective -- produced by cancerous plasma cells. The reading here is 5.5 g/dl of blood -- that is, the M-spike is 5.5
Now, here's what the graph looked like as of July 16th, about 10 days ago, when we first got the reading of "trace" levels. You will note, the spike on the right has declined tremendously.
The other proteins in the blood fluctuate but don't change too wildly. You can compare the size of the spike on the right to the other spike on the left -- the normal spike -- to see how much it has changed in five months of therapy. The bad protein spike has gone from more than twice the size of the normal spike to about 1/7th the size of it.
Here's where things get tantalizingly interesting and what is keeping me up tonight with anticipation. We're still waiting on the actual numbers...you can see in both the photo below and the first one above that some of the results are noted as "in lab" on the sheet, whereas the actual results are shown in the second photo of the series (TR, meaning trace, with the explanation below). The chart below is from the analysis of my blood on July 27th.
Now I dunno if this is zero, or trace still, but the size of that hump is less than the size of it just 10 days ago. So regardless of what the quantitative reading is when it comes back, it's moving down! This despite the fact that my active therapy ended several days before the draw. So that's excellent.
I was told by SF that he would be shocked if my maintenance therapy didn't wipe out what little was left pretty soon. I had joked with BB that whatever cancer cells were left were like the two Japanese soldiers left on a tiny island who never received word that WW2 was over. Sooner or later they will get with the program. Strictly speaking, that begins the 72-month count. Recall that per BB's data, six years of sustained complete remission equals a cure. Few low risk patients (less than 20%) lose CR once it is achieved.
Okay, now that I've gotten a few more pictures from my iPhone to this blog, I did move two more over for comic effect.
First, a celebrity sighting...of sorts. :) Any of you see The Curious Case of Benjamin Button, based on the F. Scott Fitzgerald short story about the man born elderly who grows younger as he ages? Here's a well-known stlll from the film.
Yesterday, at the sushi restaurant we like here, I'm pretty sure we saw this guy.
Okay...okay!!! (your humble narrator is now ducking tomatoes and boos and hisses). Sorry! But c'mon it IS pretty funny, right? :)
I will leave you with the type of dessert menu only found in this part of the country. Please note that a "Moonpie" was the primary source of food for the hero in the videogame "Redneck Rampage."
We passed on everything -- particularly the Moonpie and the Bacon Ice Cream. Barf.
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