Seriously. Can't I ever come to the table with any good news. Always doom and gloom. Well, get ready for it.
So, remember how I was saying that things have not progressing as well as they should? Still on that trend. I am currently still on Tasigna 800mg, but it doesn't seem to be having the desired effect on my cancer. The skin on my face is turning white...or maybe brown...I can't tell if the discoloration is too much pigment or not enough, it looks like my sunscreen application went seriously amiss...but the cancer reading (my BCR-ABL pcr) is still at over 8% as of the end of May. So I know that 8% sounds like I am doing better, like things are moving in the right direction, since I was at 14% at the beginning of the year, but the truth of the matter is that I need it to go down below .1%. This is the all important milestone that I am trying to reach - if/when I get there, it will mean that the cancer has very little chance of progressing. (Progressing? Huh? What does that mean? Well, if the cancer is not well controlled by the medication that I am on, there is a risk that it will progress into a more serious stage called Blast Crisis - which is very hard to treat, almost always requires full chemotherapy, and will almost always require a bone marrow or stem cell transplant - if the patient makes it that long.) So 8% - while it is less than 14% - is still miles away from where I need to be, especially since I've been on Tasigna for more than 7 months.
The one bright shining light throughout this has been that I haven't had to have a red blood cell transfusion since April 8th, 2016. My reds have been falling at a much slower pace, while the other counts (platelets, WBC) have stayed MY regular standard sucky, but somewhat stabilized. A transfusion MAY be in my future, however, as even though they have not been falling quite as fast, my counts have still been falling and I can feel that I'm getting low.
The PA that I have been shuffled off to in my new cancer clinic (oh yeah, that's right, they have handed me off to a PA to treat my refractory CML, that sounds like a brilliant decision, right?) has actually made a bit of a brilliant move, and sent in a referral for me to see a Dr. at UCLA. I've walked this road before. My original oncologist tried to get me in to see someone at UCLA, and the insurance company denied the request. Seems like second time was the charm, as I had UCLA calling me to schedule an appointment, before I'd even received the approval of the request in the mail. And, another shocker! they've already fit me into their schedule and I had my first office consultation.
Let me tell you how that went. UCLA thinks that I might need a bone marrow transplant. To which I replied, "Hmm. No thanks." Actually, what the Dr. I saw said was that I have had a suboptimal response to all of the medications that I have tried, thus far, and if one is not able to control the cancer level, and/or if my bone marrow does not start producing healthy cells, I MAY need a bone marrow transplant. She has suggested that my Dr.(PA) change my medication to Ponatinib (if you don't know about it, don't look it up, the warnings are scary AF), and that she would present my case to the transplant board for approval IN CASE the Ponatinib does not work, and I do, ultimately, need a bone marrow transplant. They are going to start the approval process with my insurance company, and get testing kits out to my sister and I for HLA typing. The smarties at UCLA are loading me up in the chute. But I'm digging in my heels.
IF Ponatinib doesn't do it for me, there is still one more currently approved medication to treat CML called Bosutinib. The Dr. at UCLA said that she doesn't like to prescribe it, as it has a tendency to cause "acute intestinal distress", but personally, if it becomes my last option before a BMT, I would much rather take my chances with some diarrhea than chemotherapy, radiation, possible transplant complications (like death), severe Graft vs. Host Disease, and on top of that, probably some acute intestinal distress caused by trying to - oh I don't know - KILL OFF all of my blood cells and replace them with new ones, that HOPEFULLY my body will not reject. That sounds like something that could cause some intestinal distress. Let's try to avoid that if at all possible.
So here's my plan: Ponatinib first, and hopefully that's the end of the story. Luckily, statistics that I've looked up regarding Ponatinib suggest that it is very good at treating refractory CML. (Hey, that's what I have!) Some studies have even suggested that as many as 65% of people with treatment resistant CML have benefited from Ponatinib. So, I'm going to go ahead be encouraged by those statistics, while cautiously preparing for a less than stellar outcome, and in the meantime try not to be such a bummer, man.
Monday, July 18, 2016
Monday, March 14, 2016
Happenings
"God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference."
I'm not really a very religious person, but this has been my mantra for the past few months. (I'm not a recovering alcoholic, either.) Things have been going...not exactly poorly, but not nearly as well as one could have hoped. When I was first diagnosed with CML, I was told that I was lucky because I got the "good cancer". There is no such thing. Cancer sucks. It's a life sucking, soul sucking kind of suck, especially when you have the "good cancer". Having the "good cancer" essentially means that you are supposed to pretend that you don't have cancer, and go about your daily life. It's harder than one might think.
Ignoring my cancer has been made more difficult by the fact that I've had Dr appointments every two weeks for nearly the past year. My blood counts continue to be very low - and I've consistently had to have red blood cell transfusions approximately every six weeks. Sprycel stopped working for me in November of 2015, as my PCR (BCR-ABL) went from 8% to 18%, and I was switched to a new drug called Tasigna. I'm on the highest dosage recommended (800mg daily), and my Dr. had taken to calling my cancer "refractory". (I looked it up. It means: leukemia that does not respond to treatment. Lovely, thanks for that.) Speaking of Dr's, my medical group decided to "outsource" their oncology department, and I lost my Dr at the end of February. Luckily, his replacement turned out to be the Dr. that I saw for my second opinion, so he at least had a cursory understanding of my case. At our first appointment, he was a little shocked at how low my (blood count) numbers were, but with my platelets coming in at 47, I assured him that they were actually on the rise, as I had been hovering in the 30s for months now.
Besides my new oncologist, I also saw a "specialist" at Loma Linda in January of this year. It took an unbelievably long time to get an appointment, and for the first 15 minutes, he thought that I had AML due to a typo on his summary sheet. When he found out that I actually have CML - something that he would have known if he had, in fact, looked at any of my medical records that I had painstakingly collected and had sent over - he briefly reviewed my history, suggested that I move to a lower elevation, try not to have so many blood transfusions, get better health insurance, and have a bone marrow biopsy, then sent me on my way. Three months of waiting, for that? Really? He must not have got the memo about the "refractory" nature of my cancer.
However, my oncologist did take his advice, and scheduled me to have a bone marrow biopsy. I felt like I needed one, but by the time the day came, I was pretty much petrified. Some hospitals/Dr's will put you under anesthesia for the procedure, but the practice that I am affiliated with just uses a local - lidocane. If anyone is wondering, they lay you on your stomach, and numb you up with a couple of shots of lidocane. The needle is pushed into your illiac crest (which is low on your back, almost down to your behind, either to the right or left.) It takes quite a bit of pressure to get it through the bone. They then take a bone marrow aspiration, which means that they suck some of the fluid from inside the bone. This is the part that was the most uncomfortable. It felt like a white hot zap was flowing through me, and out. Like the jolt of a nerve. Unnerving. Next, they twist the needle around in order to take a core - a piece of the bone. They're looking for about a cm piece, and unfortunately, my first core was insufficient, so they had to go back in and take another. Then they bandage you up, lay you on your back to put pressure on the wound, and send you home. Quite honestly, the anticipation was the worst part of my first bone marrow biopsy, for me. I've had dental procedures that have been more painful.
Unfortunately, more bad news when the report finally came in. It stated that I have a "variant" of the Philadelphia Chromosome that is resistant to therapy. In CML, in most cases, a portion of chromosomes 9 and 22 break off and switch places. This creates what they refer to as the "Philadelphia Chromosome". Upon review, they found that in 85% of my cells, a small portion of chromosome 9 was lost during the switch - the deletion apparently means that the drugs that have been developed to treat CML thus far, don't work quite as well as they should for me. This was further supported by a test that they also do which looks at 20 cells to see how many still carry the Philadelphia translocation. Nineteen out of twenty were positive for leukemia. So that's frustrating. To have to endure low blood counts, and almost monthly transfusions, and STILL not be making much progress toward eradicating the leukemic cells is absolutely disheartening. Crushing. Devastating.
My Dr's have started slipping questions like "do you have any siblings"? "does your sister look like you"? "have you been HLA typed"? "has she"? into the conversation. (Yeah, they're none too sly.) I haven't. And I'm not going there yet. Maybe Tasigna is going to kick in, and start kicking leukemia butt. (I'm giving it another month.) If not, then maybe Bosutinib is the one for me. Or Pontinib. While there is a chance that the medications are not going to work well for me, there is also a chance that one of them WILL.
And so...for now: serenity, courage, and wisdom, please be with me.
The courage to change the things I can,
And wisdom to know the difference."
I'm not really a very religious person, but this has been my mantra for the past few months. (I'm not a recovering alcoholic, either.) Things have been going...not exactly poorly, but not nearly as well as one could have hoped. When I was first diagnosed with CML, I was told that I was lucky because I got the "good cancer". There is no such thing. Cancer sucks. It's a life sucking, soul sucking kind of suck, especially when you have the "good cancer". Having the "good cancer" essentially means that you are supposed to pretend that you don't have cancer, and go about your daily life. It's harder than one might think.
Ignoring my cancer has been made more difficult by the fact that I've had Dr appointments every two weeks for nearly the past year. My blood counts continue to be very low - and I've consistently had to have red blood cell transfusions approximately every six weeks. Sprycel stopped working for me in November of 2015, as my PCR (BCR-ABL) went from 8% to 18%, and I was switched to a new drug called Tasigna. I'm on the highest dosage recommended (800mg daily), and my Dr. had taken to calling my cancer "refractory". (I looked it up. It means: leukemia that does not respond to treatment. Lovely, thanks for that.) Speaking of Dr's, my medical group decided to "outsource" their oncology department, and I lost my Dr at the end of February. Luckily, his replacement turned out to be the Dr. that I saw for my second opinion, so he at least had a cursory understanding of my case. At our first appointment, he was a little shocked at how low my (blood count) numbers were, but with my platelets coming in at 47, I assured him that they were actually on the rise, as I had been hovering in the 30s for months now.
Besides my new oncologist, I also saw a "specialist" at Loma Linda in January of this year. It took an unbelievably long time to get an appointment, and for the first 15 minutes, he thought that I had AML due to a typo on his summary sheet. When he found out that I actually have CML - something that he would have known if he had, in fact, looked at any of my medical records that I had painstakingly collected and had sent over - he briefly reviewed my history, suggested that I move to a lower elevation, try not to have so many blood transfusions, get better health insurance, and have a bone marrow biopsy, then sent me on my way. Three months of waiting, for that? Really? He must not have got the memo about the "refractory" nature of my cancer.
However, my oncologist did take his advice, and scheduled me to have a bone marrow biopsy. I felt like I needed one, but by the time the day came, I was pretty much petrified. Some hospitals/Dr's will put you under anesthesia for the procedure, but the practice that I am affiliated with just uses a local - lidocane. If anyone is wondering, they lay you on your stomach, and numb you up with a couple of shots of lidocane. The needle is pushed into your illiac crest (which is low on your back, almost down to your behind, either to the right or left.) It takes quite a bit of pressure to get it through the bone. They then take a bone marrow aspiration, which means that they suck some of the fluid from inside the bone. This is the part that was the most uncomfortable. It felt like a white hot zap was flowing through me, and out. Like the jolt of a nerve. Unnerving. Next, they twist the needle around in order to take a core - a piece of the bone. They're looking for about a cm piece, and unfortunately, my first core was insufficient, so they had to go back in and take another. Then they bandage you up, lay you on your back to put pressure on the wound, and send you home. Quite honestly, the anticipation was the worst part of my first bone marrow biopsy, for me. I've had dental procedures that have been more painful.
Unfortunately, more bad news when the report finally came in. It stated that I have a "variant" of the Philadelphia Chromosome that is resistant to therapy. In CML, in most cases, a portion of chromosomes 9 and 22 break off and switch places. This creates what they refer to as the "Philadelphia Chromosome". Upon review, they found that in 85% of my cells, a small portion of chromosome 9 was lost during the switch - the deletion apparently means that the drugs that have been developed to treat CML thus far, don't work quite as well as they should for me. This was further supported by a test that they also do which looks at 20 cells to see how many still carry the Philadelphia translocation. Nineteen out of twenty were positive for leukemia. So that's frustrating. To have to endure low blood counts, and almost monthly transfusions, and STILL not be making much progress toward eradicating the leukemic cells is absolutely disheartening. Crushing. Devastating.
My Dr's have started slipping questions like "do you have any siblings"? "does your sister look like you"? "have you been HLA typed"? "has she"? into the conversation. (Yeah, they're none too sly.) I haven't. And I'm not going there yet. Maybe Tasigna is going to kick in, and start kicking leukemia butt. (I'm giving it another month.) If not, then maybe Bosutinib is the one for me. Or Pontinib. While there is a chance that the medications are not going to work well for me, there is also a chance that one of them WILL.
And so...for now: serenity, courage, and wisdom, please be with me.
Sunday, November 1, 2015
Out of the Frying Pan, Into the Fire
Being on 50 mg Sprycel was nice. Nice to not have to watch the bruises bloom on my arms with the slightest bump, and nice to be able to go more than a couple of weeks without a blood transfusion. Alas, it was not meant to be. While my blood counts initially recovered on a lowered dosage of Sprycel, they eventually began to fall again, and my PCR - the test that measures the percentage of leukemia cells present in my blood- tripled in a matter of six weeks.
So here I am again, back on a full 100 mg dosage of Sprycel, with blood counts falling faster than ever. I've had a total of five blood transfusions so far this year, and am fully expecting to be needing another in the immediate future. But, now, even that is complicated. I had an allergic reaction to the a transfusion I had in September - 5 days worth of fever, chills, and diarrhea - so I now need a mega dose of iv benadryl to make it through. The last transfusion (October) went off without a hitch, although I had to fight hard to stay awake. For those that have never had iv benadryl, as soon as they administered it I felt immediately drugged. My tongue felt too big for my mouth, my eyes wouldn't keep up with my brain, and I had to consciously try to figure out if I was breathing. (I was.)
I'm not sure what exactly went wrong, but, apparently the more transfusions that you have, the more chance there is that you can develop antibodies post transfusion that recognize the donor blood as foreign, resulting in the immune system attacking the donor red blood cells. I think that this is what happened, as two weeks post transfusion, my blood counts were at pre-transfusion levels (hemoglobin was low at 6.9) and I required yet another red blood cell transfusion. (I usually get four to six weeks between transfusions.) There has to be a better way, right? Apparently not.
My doctor has decided that I need to see a Specialist as I am not a "typical, easy case" and in his words, he'd much rather have "someone holding his hand" regarding my treatment. I'm all for it. Waiting for my records to be sent over for a specialist appointment at Loma Linda. Waiting, and waiting. I do an awful lot of waiting.
And so, I'm back in the same predicament - the same f'd up cycle - except it seems to have become a bit more accelerated, with blood counts at record low levels, and staying there, and PCR still well above 1% after over 18 months of treatment. In case I haven't mentioned it, having cancer sucks.
Friday, August 14, 2015
Partly Sunny Skies
This post is long over due. A lot has changed since my last entry. After months of low blood counts, I hit an all time low in July with my hemoglobin clocking in at 6.6. That's about half of normal. That's like,"she could have major organ failure at any time" levels. I felt tired, but not any more so than usual. Still schlepped it to work everyday, AND Keith and I rode our bikes about 4 miles to see the fireworks on 4th of July. What can I say? I'm a champion.
Due to dangerously low counts, another blood transfusion ensued. Thank you to the person in Arizona that helped to keep all my systems functioning for another couple of weeks. (Keith and I like to make a note of where - which state - the blood I get comes from, and wildly conjecture about, and do hilarious imitations of, the imagined person that donated it.)
Finally, my Dr decided that enough was enough, that something had to give, and has cut my Sprycel dosage in half. Whereas I was taking 100mg daily, I am now swallowing pills half that size. And...drum roll please...on one front, at least, it seems to be working. I've had two follow up appointments since changing dosage, and both my platelets and my hemoglobin have inched their way up. Incrementally. Side effects so far seem to have been regaining a little bit of color in my face and lips, and Keith not checking my breathing every morning when he wakes up to make sure that I'm still alive. It's not a big "ta-da" moment yet, but most definitely, it feels like the sun is peeking out from behind the clouds and shining on me, if only a little bit.
My BCR-ABL (cancer levels) are still higher than I would like seeing as how I'm 16 months post diagnosis. Most Dr's would like to see your levels at .01 by 18 months, which is a milestone of treatment referred to as "major molecular response". Considering that mine was 9.8% when last measured on 7/2/2015, I most likely won't hit that deadline. As long as I continue to go down, and do not have a spike on the lowered dosage, I'll be happy.
All in all, thank goodness my blood counts are beginning to stabilize, I'm feeling a bit more energetic (Keith and I went kayaking last weekend), and life is becoming a bit more normal. Don't get me wrong, I'm still on the two week blood draw schedule. (I'm there so much that the receptionist knows my name on sight.) And my blood counts are still nowhere near "normal" - if a Dr that didn't know my history read my labs, he'd probably poop his pants and wonder why I haven't been hospitalized - but I'm making forward/upward/positive progress, and that's more than I've been able to say for a long time.
Forecast - Mostly Sunny.
Hurray.
Due to dangerously low counts, another blood transfusion ensued. Thank you to the person in Arizona that helped to keep all my systems functioning for another couple of weeks. (Keith and I like to make a note of where - which state - the blood I get comes from, and wildly conjecture about, and do hilarious imitations of, the imagined person that donated it.)
Finally, my Dr decided that enough was enough, that something had to give, and has cut my Sprycel dosage in half. Whereas I was taking 100mg daily, I am now swallowing pills half that size. And...drum roll please...on one front, at least, it seems to be working. I've had two follow up appointments since changing dosage, and both my platelets and my hemoglobin have inched their way up. Incrementally. Side effects so far seem to have been regaining a little bit of color in my face and lips, and Keith not checking my breathing every morning when he wakes up to make sure that I'm still alive. It's not a big "ta-da" moment yet, but most definitely, it feels like the sun is peeking out from behind the clouds and shining on me, if only a little bit.
My BCR-ABL (cancer levels) are still higher than I would like seeing as how I'm 16 months post diagnosis. Most Dr's would like to see your levels at .01 by 18 months, which is a milestone of treatment referred to as "major molecular response". Considering that mine was 9.8% when last measured on 7/2/2015, I most likely won't hit that deadline. As long as I continue to go down, and do not have a spike on the lowered dosage, I'll be happy.
All in all, thank goodness my blood counts are beginning to stabilize, I'm feeling a bit more energetic (Keith and I went kayaking last weekend), and life is becoming a bit more normal. Don't get me wrong, I'm still on the two week blood draw schedule. (I'm there so much that the receptionist knows my name on sight.) And my blood counts are still nowhere near "normal" - if a Dr that didn't know my history read my labs, he'd probably poop his pants and wonder why I haven't been hospitalized - but I'm making forward/upward/positive progress, and that's more than I've been able to say for a long time.
Forecast - Mostly Sunny.
Hurray.
Friday, July 3, 2015
The Sun Will Come Out...Tomorrow
On the home front:
So that "vacation" didn't turn out quite like I'd planned. I'd expected to be reveling in the joy of infrequent doctor appointments, and a fatter wallet from a couple if "co-pay-less" weeks, but our sweet kitty was attacked by a coyote on 6/13/2015. After multiple surgeries, two weeks of wearing the cone of shame, and the care of his angel Aunt Cathy - who has saved his life, and ours, multiple times and on multiple occasions these past couple of weeks - it looks like he is on the mend. Every day that he feels better, he's a little more of a tyrant - so by that formula he's been feeling really good for the past couple of days. Keith has been a saint, waking up with him in the middle of the night to take care of kitty cat bathroom emergencies, sitting perfectly still for hours while Bobby naps on his knees, and carrying him around the house like a taco - with his little cat bed folded in half around him. Meanwhile I dispense medications (down a reluctant cat's throat), wash countless loads of laundry, and sleep through his midnight meows.
On the cancer front:
Living with a chronic disease is not an easy thing. Every time I see the doctor, every time I have labs drawn, I'm hopeful that things will be better. Maybe I should reconsider my basic approach. In the words of Llyod Dobler from Say Anything, "If you start out depressed, everything's kind of a pleasant surprise." Maybe that's my mistake. Anticipating some great rebound; an amazing recovery - when the truth of the matter is that I have cancer. Not only do I have cancer, I have a chronic cancer - a cancer that can be treated, but cannot be cured. It's a tough pill to swallow - knowing that I will always have cancer. Even if it's only in a minuscule number of cells, it will always be there, insidious, lurking, waiting for an opportunity to gain the upper hand - if I let it. (Don't worry. I'm not going to let it.)
Not a lot of you know this, but I went and got a "second opinion" from another oncologist last month. It was a weird messed up situation, because it was in the same practice - the same office - as my current doctor, and I actually ran into him immediately following my consultation. I had the new doctor review my treatment, my status, and my concerns. He told me that the only thing that he would change about my current treatment was that he would run a Kinase Mutation test, in order to guide the selection of the medication that I am on. Oh, and don't worry, he'd let my oncologist know. (So much for keeping my concerns about the treatment that I was receiving on the down low.)
After much confusion about ordering the correct test from the lab, the results are in, and I do have a mutation. The mutation that I have is called an "insertion" mutation. This mutation indicates a resistance to imatinib (Gleevec) which makes sense, considering my prior Gleevec history. All research indicates that Sprycel (which I'm on) Tasigna, and newer TKI's will work well against this mutation.
And as far as I know, Sprycel is working well. Too well. Blood counts are low again. For those of you that are keeping track: As of 6/23/2015: Hemoglobin is at 8.7 (not too low, but consider, I did have 2 units of blood transfused on 6/6/15.) Platelets are at 35. Abysmal. And ANC is 700. Which is also concerning. Last week, I agreed to another shot of Procrit, and my doctor agreed to letting me go two weeks between appointments. Negotiation.
One of the hardest parts of having cancer, in this moment, is the fact that I never have any good news. I constantly have to give Keith, my family, our friends, and my co-workers bad news about my health. I try to down play it. "Aw well, don't worry. I'll do better next time." I've been using that line for too long now. The truth is I'm tired. I'm covered in bruises, and I live in constant fear of getting an infection. Right now, cancer-wise there is no good news. I'm sure that there will be again, someday. Just not today.
Maybe tomorrow.
So that "vacation" didn't turn out quite like I'd planned. I'd expected to be reveling in the joy of infrequent doctor appointments, and a fatter wallet from a couple if "co-pay-less" weeks, but our sweet kitty was attacked by a coyote on 6/13/2015. After multiple surgeries, two weeks of wearing the cone of shame, and the care of his angel Aunt Cathy - who has saved his life, and ours, multiple times and on multiple occasions these past couple of weeks - it looks like he is on the mend. Every day that he feels better, he's a little more of a tyrant - so by that formula he's been feeling really good for the past couple of days. Keith has been a saint, waking up with him in the middle of the night to take care of kitty cat bathroom emergencies, sitting perfectly still for hours while Bobby naps on his knees, and carrying him around the house like a taco - with his little cat bed folded in half around him. Meanwhile I dispense medications (down a reluctant cat's throat), wash countless loads of laundry, and sleep through his midnight meows.
On the cancer front:
Living with a chronic disease is not an easy thing. Every time I see the doctor, every time I have labs drawn, I'm hopeful that things will be better. Maybe I should reconsider my basic approach. In the words of Llyod Dobler from Say Anything, "If you start out depressed, everything's kind of a pleasant surprise." Maybe that's my mistake. Anticipating some great rebound; an amazing recovery - when the truth of the matter is that I have cancer. Not only do I have cancer, I have a chronic cancer - a cancer that can be treated, but cannot be cured. It's a tough pill to swallow - knowing that I will always have cancer. Even if it's only in a minuscule number of cells, it will always be there, insidious, lurking, waiting for an opportunity to gain the upper hand - if I let it. (Don't worry. I'm not going to let it.)
Not a lot of you know this, but I went and got a "second opinion" from another oncologist last month. It was a weird messed up situation, because it was in the same practice - the same office - as my current doctor, and I actually ran into him immediately following my consultation. I had the new doctor review my treatment, my status, and my concerns. He told me that the only thing that he would change about my current treatment was that he would run a Kinase Mutation test, in order to guide the selection of the medication that I am on. Oh, and don't worry, he'd let my oncologist know. (So much for keeping my concerns about the treatment that I was receiving on the down low.)
After much confusion about ordering the correct test from the lab, the results are in, and I do have a mutation. The mutation that I have is called an "insertion" mutation. This mutation indicates a resistance to imatinib (Gleevec) which makes sense, considering my prior Gleevec history. All research indicates that Sprycel (which I'm on) Tasigna, and newer TKI's will work well against this mutation.
And as far as I know, Sprycel is working well. Too well. Blood counts are low again. For those of you that are keeping track: As of 6/23/2015: Hemoglobin is at 8.7 (not too low, but consider, I did have 2 units of blood transfused on 6/6/15.) Platelets are at 35. Abysmal. And ANC is 700. Which is also concerning. Last week, I agreed to another shot of Procrit, and my doctor agreed to letting me go two weeks between appointments. Negotiation.
One of the hardest parts of having cancer, in this moment, is the fact that I never have any good news. I constantly have to give Keith, my family, our friends, and my co-workers bad news about my health. I try to down play it. "Aw well, don't worry. I'll do better next time." I've been using that line for too long now. The truth is I'm tired. I'm covered in bruises, and I live in constant fear of getting an infection. Right now, cancer-wise there is no good news. I'm sure that there will be again, someday. Just not today.
Maybe tomorrow.
Sunday, June 7, 2015
Vampires and Pincushions
I've been doing my best impression of a pincushion this week. I've been poked by needles six times in five days. Just after I'd commented on how it doesn't phase me anymore I was put to the test.
My Tuesday appointment was an absolute waste of time. When I got there, I found that the lab had "lost" my blood work. (Needle poke one.) The nurse told me that they had sent her the wrong info, for someone with a name very similar to mine. (If they transposed them, poor Rachel Ball is going to get the shock of her life.) The doctor had nothing to tell me, except that he was going on vacation the next week, and so had me go back to the lab and give blood again (needle poke two), and scheduled a Friday blood draw (needle poke three). Hemoglobin came in at 7.9 on Tuesday, with platelets actually coming up a little from the previous week at 32 instead of the dismal 22 of the week before. White blood cell count stayed the same. On Friday, my hemoglobin and platelets actually held, which made me think that they had gotten things mixed up again, and were reading the wrong results, except for the fact that my white blood cells came up a little. Maybe this is the beginning of an upwards trend. Fingers and toes crossed.
Despite the fact that my hemoglobin held, my doctor scheduled me for a blood transfusion, anyway. Because he was going on vacation, and would not be in the office for ten days, he didn't want to take any chances that my red blood cells would tank again. So, after driving down the hill on Friday, coming back up, and working a full work day, I had to go back down again to the hospital to get crossed and typed (needle poke four) for a blood transfusion on Saturday.
I was late to my appointment Saturday. This was my first time receiving a transfusion at the "transfusion center". The nurse monitoring the transfusions was irritated with me for being late, and wiggled the needle around in my forearm (needle poke five) for a couple of minutes, unable to get the vein, before giving up, and placing in the inside bend of my elbow (needle poke six). Yes, I have gotten used to needles and blood draws, but if you've never had one, IV needles are the pits. I can't look at them when they put them in. They're about the size of a sewing machine needle - stiff long and painful.
They pushed two units of blood, and this time, it went much quicker - about three and a half hours total. Downside to the quick transfusion was that I was freezing cold by the time I finished. They keep the blood refrigerated, and you can apparently get hypothermia, if you're transfused too quickly. I had to go out and sit in the sun for ten minutes to warm up at all, and looked like a crazy person wearing a fleece lined sweatshirt in 75 degree weather.
So this week, I look like a junkie with bruises all up and down my arms, but I can breathe and I don't have any tightness in my chest, so I suppose it's worth it. That, paired with the fact that I don't have to see the doctor again until the 15th makes me feel like I'm on vacation myself.
My Tuesday appointment was an absolute waste of time. When I got there, I found that the lab had "lost" my blood work. (Needle poke one.) The nurse told me that they had sent her the wrong info, for someone with a name very similar to mine. (If they transposed them, poor Rachel Ball is going to get the shock of her life.) The doctor had nothing to tell me, except that he was going on vacation the next week, and so had me go back to the lab and give blood again (needle poke two), and scheduled a Friday blood draw (needle poke three). Hemoglobin came in at 7.9 on Tuesday, with platelets actually coming up a little from the previous week at 32 instead of the dismal 22 of the week before. White blood cell count stayed the same. On Friday, my hemoglobin and platelets actually held, which made me think that they had gotten things mixed up again, and were reading the wrong results, except for the fact that my white blood cells came up a little. Maybe this is the beginning of an upwards trend. Fingers and toes crossed.
Despite the fact that my hemoglobin held, my doctor scheduled me for a blood transfusion, anyway. Because he was going on vacation, and would not be in the office for ten days, he didn't want to take any chances that my red blood cells would tank again. So, after driving down the hill on Friday, coming back up, and working a full work day, I had to go back down again to the hospital to get crossed and typed (needle poke four) for a blood transfusion on Saturday.
I was late to my appointment Saturday. This was my first time receiving a transfusion at the "transfusion center". The nurse monitoring the transfusions was irritated with me for being late, and wiggled the needle around in my forearm (needle poke five) for a couple of minutes, unable to get the vein, before giving up, and placing in the inside bend of my elbow (needle poke six). Yes, I have gotten used to needles and blood draws, but if you've never had one, IV needles are the pits. I can't look at them when they put them in. They're about the size of a sewing machine needle - stiff long and painful.
They pushed two units of blood, and this time, it went much quicker - about three and a half hours total. Downside to the quick transfusion was that I was freezing cold by the time I finished. They keep the blood refrigerated, and you can apparently get hypothermia, if you're transfused too quickly. I had to go out and sit in the sun for ten minutes to warm up at all, and looked like a crazy person wearing a fleece lined sweatshirt in 75 degree weather.
So this week, I look like a junkie with bruises all up and down my arms, but I can breathe and I don't have any tightness in my chest, so I suppose it's worth it. That, paired with the fact that I don't have to see the doctor again until the 15th makes me feel like I'm on vacation myself.
Sunday, May 31, 2015
More Good News...
I've only ever donated blood once in my life. (And all things considered, knowing what I know now, I hope they poured that bag of it down the drain.) It was back during my college years, and the blood-mobile would make regular appearances on campus. One day, I thought "What the heck? Lets spend an hour doing something nice for someone else." It did not go smoothly. Don't get me wrong, it came out all right, but then, as I was sitting in the back sipping some juice, everything went sweaty and black. I woke on the floor, half jammed under a seat of the bus, clutching my "I gave blood!" pin, in a puddle of orange juice. Not the ideal experience.
Given that little episode, I was pretty surprised when I received a card in the mail a couple of weeks later, thanking me for my donation, and giving my specimen an A+. I swelled with pride. Good job, me. Until I realized that the A+ was my blood type, and not a grade.
Since that day, I've probably had to have blood drawn for testing over 100 times. If ever I was squeamish at all, I got over it long ago. Most of you probably don't know this, but every time they draw blood they ask you if you have any history of problems with blood draws...I lie every time.
So while I've only ever given blood one time, I've been the recipient of it on numerous occasions. First, in the hospital when I was diagnosed with CML and undergoing leukapherisis (I think that the process pulled out too much of the "good cells" along with the bad.) Now, once again, over Memorial Weekend they topped off my blood supply.
Pretty sure that my doctor hates me. Why else would he send me to the emergency room over the Memorial Day weekend? Oh, yeah, hemoglobin 7.1, and the feeling that my chest was caving in - that's probably why. My appointment on the Friday before the holiday weekend left much to be desired, as my red blood cell count fell again. Platelets and white blood cells held at pretty much the same marginally crappy levels from the week before, but the hemoglobin keeps going down down. Hemoglobin at 7.1 is pretty darn low. Most people get a blood transfusion at 8.0, but I seem to feel well enough at 8. Below 8.0 is considered severely anemic, and below 6.5 is considered life threatening. So at 7.1 I was flirting with disaster. To be fair, my doctor did try to send me to the hospital to get "typed and crossed" that afternoon, but considering that it was 3pm on the Friday preceding the holiday weekend, everyone at the transfusion center had left for the day. As my hemoglobin level seemed to be falling .2-.5 weekly, my oncologist did not want for me to have to wait until the following Tuesday to get a transfusion, so he told me to go to the Emergency Room over the weekend.
I tried to get out of it. Told Keith that I was feeling fine. But when you're panting for breath after folding a load of laundry, that "I'm fine" line is a tough one to sell.
I completely expected that the Emergency Room would be expecting me. Thought that my doctor would have made some kind of arrangement to get me in and out fast. Thought wrong.
When we got there on Saturday, they were mercifully not busy. There were only a couple of people waiting, and by the time I had signed in and used the restroom, they were calling me back. I waited in a triage room for about half an hour, when a Doctor finally came over to interview me. I gave him the spiel. "I have leukemia. My hemoglobin was at 7.1 as of the 20th, and instead of waiting until Tuesday to come in for a transfusion, my oncologist told me to come to the emergency room." Yeah, I don't think that he was listening. Or else he didn't believe me. I look pale, but otherwise remarkably healthy for a cancer patient with severe anemia, so he ordered a chest x-ray, an ekg, and a blood test. I submitted, with a little irritation, fully aware that this little trip was most likely going to take all day.
And it did. After jumping through most of his hoops - I refused to pee in his cup, but I submitted to everything else -finally my blood test comes back, and the doctor comes up to me, honestly looking a little alarmed, and says that they are going to give me a unit of blood. My hemoglobin level is at 6.8. Super. Make that two and I'll be out of your hair.
He refuses two. Really? Depending on height and weight, one unit of blood will generally raise your hemoglobin about 1 full point. So at 6.8, one unit is only going to get me to 7.8. Considering that I've been trending down as much as .5 weekly, that will mean that I'll be right back around where I started in a little over a week. And I definitely did not give up my Saturday to be right back in the hospital again in a week.
So they give me a bed, and they give me a gown (if you're in a bed you've got to wear a gown) and a nice nurse named Jordan puts in an IV, and I wait for my blood. Did you know that it takes anywhere from 2-4 hours for each unit of blood transfused? Me neither. The last time I went through this, getting blood was the least traumatic of everything that was happening to me, so I wasn't really watching the clock. They hook me up, and everything goes well. No reactions. And the pressure on my chest begins to lighten, and my color begins to return. (I've been looking a little ghostly.)
As the last bits of the bag are pumped into me the doctor comes over and asks how I'm feeling. "Better," I say. "It would be nice, if you could give me another unit, though. I understand if you guys are busy, and you need the bed, but I feel like if I don't get two, I'll be right back in this position next week. My doctor did want me to have two." He gives in. So that'll be another couple hours I don't want to spend there, but I'm considering it the lesser of two evils. Better another two hours in the emergency room,than another whole day.
They start the next bag at about 7pm. We've been there since around noon. Since I didn't have any complications, they were able to transfuse me quickly, and it only took about 2 hours for each unit. When I'm done, they unhook me, flush my line, and pull my IV. Dismissed. Literally. No escort to the door, no spotter to make sure that I can walk. That is literally that.
As we walk to the car, I notice that all of my chest pressure is gone. I check myself in the side mirror, and my lips are actually pink. While the thought of getting someone else's blood pumped into you is pretty gross, the reality of it is a blessing.
So the past week I've been amazed at how much better I feel. I can actually breathe deep breaths and my heart doesn't race when I walk out and get in my car in the mornings. I even took a hike. A very slow, out of shape, heart pumping hike - but it feels good to be able to exercise a little bit again.
Given how much better I've been feeling, I was a little shocked that my numbers this week were so bad. Or "sucky" as my doctor called them. After an entire 12 hours at the emergency room, and two units of blood, my hemoglobin this week is at 8.3. We were both hoping for something better. Even worse, my platelets have plummeted to 22, and my ANC has hit an all time low at 699. If it's not one damn thing, it's another damn thing.
The choices are pretty limited at this point. Choice one are stimulating drugs like procrit for the low red blood cells and neupogen or neulasta if my whites get too low. There are some pretty scary risks associated with accepting these drugs, so understandably, I'd like to keep my use of them to an absolute minimum, if at all possible. Choice two are transfusions. There are also risks associated with red blood cell and platelet transfusions, like allergic reaction, or contracting something from the blood product that you've been transfused with, ranging all the way from the big scary HIV or hepatitis, to a less scary virus. And choice three, stopping Sprycel for a period of time to allow my counts to regulate/come back up. The biggest issue with this one, is that while my healthy cells will hopefully rebound, so will the leukemic cells, and the cancerous cells may once again multiply unchecked. Like my blood counts, my choices are pretty sucky.
Doctors plan of action for this upcoming week has been to change my appointment to Tuesday, instead of Friday in case I need another transfusion. That way, one can be arranged before the weekend. Personal plan of action for this week - soldier on.
Oh joy.
"Down, down, down. Would the fall never come to an end!" - Alice's Adventures in Wonderland, Lewis Carroll
Given that little episode, I was pretty surprised when I received a card in the mail a couple of weeks later, thanking me for my donation, and giving my specimen an A+. I swelled with pride. Good job, me. Until I realized that the A+ was my blood type, and not a grade.
Since that day, I've probably had to have blood drawn for testing over 100 times. If ever I was squeamish at all, I got over it long ago. Most of you probably don't know this, but every time they draw blood they ask you if you have any history of problems with blood draws...I lie every time.
So while I've only ever given blood one time, I've been the recipient of it on numerous occasions. First, in the hospital when I was diagnosed with CML and undergoing leukapherisis (I think that the process pulled out too much of the "good cells" along with the bad.) Now, once again, over Memorial Weekend they topped off my blood supply.
Pretty sure that my doctor hates me. Why else would he send me to the emergency room over the Memorial Day weekend? Oh, yeah, hemoglobin 7.1, and the feeling that my chest was caving in - that's probably why. My appointment on the Friday before the holiday weekend left much to be desired, as my red blood cell count fell again. Platelets and white blood cells held at pretty much the same marginally crappy levels from the week before, but the hemoglobin keeps going down down. Hemoglobin at 7.1 is pretty darn low. Most people get a blood transfusion at 8.0, but I seem to feel well enough at 8. Below 8.0 is considered severely anemic, and below 6.5 is considered life threatening. So at 7.1 I was flirting with disaster. To be fair, my doctor did try to send me to the hospital to get "typed and crossed" that afternoon, but considering that it was 3pm on the Friday preceding the holiday weekend, everyone at the transfusion center had left for the day. As my hemoglobin level seemed to be falling .2-.5 weekly, my oncologist did not want for me to have to wait until the following Tuesday to get a transfusion, so he told me to go to the Emergency Room over the weekend.
I tried to get out of it. Told Keith that I was feeling fine. But when you're panting for breath after folding a load of laundry, that "I'm fine" line is a tough one to sell.
I completely expected that the Emergency Room would be expecting me. Thought that my doctor would have made some kind of arrangement to get me in and out fast. Thought wrong.
When we got there on Saturday, they were mercifully not busy. There were only a couple of people waiting, and by the time I had signed in and used the restroom, they were calling me back. I waited in a triage room for about half an hour, when a Doctor finally came over to interview me. I gave him the spiel. "I have leukemia. My hemoglobin was at 7.1 as of the 20th, and instead of waiting until Tuesday to come in for a transfusion, my oncologist told me to come to the emergency room." Yeah, I don't think that he was listening. Or else he didn't believe me. I look pale, but otherwise remarkably healthy for a cancer patient with severe anemia, so he ordered a chest x-ray, an ekg, and a blood test. I submitted, with a little irritation, fully aware that this little trip was most likely going to take all day.
And it did. After jumping through most of his hoops - I refused to pee in his cup, but I submitted to everything else -finally my blood test comes back, and the doctor comes up to me, honestly looking a little alarmed, and says that they are going to give me a unit of blood. My hemoglobin level is at 6.8. Super. Make that two and I'll be out of your hair.
He refuses two. Really? Depending on height and weight, one unit of blood will generally raise your hemoglobin about 1 full point. So at 6.8, one unit is only going to get me to 7.8. Considering that I've been trending down as much as .5 weekly, that will mean that I'll be right back around where I started in a little over a week. And I definitely did not give up my Saturday to be right back in the hospital again in a week.
So they give me a bed, and they give me a gown (if you're in a bed you've got to wear a gown) and a nice nurse named Jordan puts in an IV, and I wait for my blood. Did you know that it takes anywhere from 2-4 hours for each unit of blood transfused? Me neither. The last time I went through this, getting blood was the least traumatic of everything that was happening to me, so I wasn't really watching the clock. They hook me up, and everything goes well. No reactions. And the pressure on my chest begins to lighten, and my color begins to return. (I've been looking a little ghostly.)
As the last bits of the bag are pumped into me the doctor comes over and asks how I'm feeling. "Better," I say. "It would be nice, if you could give me another unit, though. I understand if you guys are busy, and you need the bed, but I feel like if I don't get two, I'll be right back in this position next week. My doctor did want me to have two." He gives in. So that'll be another couple hours I don't want to spend there, but I'm considering it the lesser of two evils. Better another two hours in the emergency room,than another whole day.
They start the next bag at about 7pm. We've been there since around noon. Since I didn't have any complications, they were able to transfuse me quickly, and it only took about 2 hours for each unit. When I'm done, they unhook me, flush my line, and pull my IV. Dismissed. Literally. No escort to the door, no spotter to make sure that I can walk. That is literally that.
As we walk to the car, I notice that all of my chest pressure is gone. I check myself in the side mirror, and my lips are actually pink. While the thought of getting someone else's blood pumped into you is pretty gross, the reality of it is a blessing.
So the past week I've been amazed at how much better I feel. I can actually breathe deep breaths and my heart doesn't race when I walk out and get in my car in the mornings. I even took a hike. A very slow, out of shape, heart pumping hike - but it feels good to be able to exercise a little bit again.
Given how much better I've been feeling, I was a little shocked that my numbers this week were so bad. Or "sucky" as my doctor called them. After an entire 12 hours at the emergency room, and two units of blood, my hemoglobin this week is at 8.3. We were both hoping for something better. Even worse, my platelets have plummeted to 22, and my ANC has hit an all time low at 699. If it's not one damn thing, it's another damn thing.
The choices are pretty limited at this point. Choice one are stimulating drugs like procrit for the low red blood cells and neupogen or neulasta if my whites get too low. There are some pretty scary risks associated with accepting these drugs, so understandably, I'd like to keep my use of them to an absolute minimum, if at all possible. Choice two are transfusions. There are also risks associated with red blood cell and platelet transfusions, like allergic reaction, or contracting something from the blood product that you've been transfused with, ranging all the way from the big scary HIV or hepatitis, to a less scary virus. And choice three, stopping Sprycel for a period of time to allow my counts to regulate/come back up. The biggest issue with this one, is that while my healthy cells will hopefully rebound, so will the leukemic cells, and the cancerous cells may once again multiply unchecked. Like my blood counts, my choices are pretty sucky.
Doctors plan of action for this upcoming week has been to change my appointment to Tuesday, instead of Friday in case I need another transfusion. That way, one can be arranged before the weekend. Personal plan of action for this week - soldier on.
Oh joy.
"Down, down, down. Would the fall never come to an end!" - Alice's Adventures in Wonderland, Lewis Carroll
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