Andrew did not get released on Friday as we hoped. Nor did he get released on Saturday or Sunday. But finally today, AMC has decided that he is well enough to be discharged. It's been a bit draining for us because it was all so unexpected -- shades of Westchester days. We got a little overexcited about his revised diagnosis and forgot that cancer is ridiculously unpredictable -- anything can happen at any time. Chemo is very hard on the body -- the organs, the central nervous system, the circulatory system, everything. And the more treatments you receive, the harder it gets. Though the cancer is lessening, the body gets weaker from the toxic load -- the "cumulative effect". Andrew needed an unbelievable amount of blood support over the last week -- I've actually lost count, but i think he received 6 units of red blood cells, 4 or 5 units of platelets, and nightly injections of neupogen to stimulate the white blood cells. Plus countless bags of antibiotics, and cups full of pills every morning. It's exhausting just to watch -- I can't imagine what it must be like to actually endure it.
Many cancer sufferers and their loved ones don't actually identify with a lot of the "rah-rah" sentiments you generally see in the media. Andrew and I talk about hoping for a cure, but never about "beating" cancer. I'm also pretty sure that when this is over, I'll never describe him as a "survivor". That kind of talk has never really resonated with us -- cancer is not a competitive sport, you see. It's going to kill you if it can -- no matter how many vitamins you took, or veggies you ate, despite your resources or positive attitude.
It is an unspeakable disease that robs you of your health, your home and family life, your money, your peace, and subjects you to every fear and indignity you can imagine. If you're lucky, current therapies and protocols can stop it, slow it, or eradicate it. And hopefully, the treatment itself doesn't cause more problems, such as related infections, or leave you with a weakened heart, nervous system, or the myriad other complications that can arise. Andrew will be getting scans and blood tests, probably for the rest of his life. We are forever changed by this experience, despite good chances for "survivor" status. And when the treatment is done we won't feel like champions, only gratitude that we somehow managed to eke out a few more days and years with each other and our kids.
There are a few slogans I do like, (in case you feared that I am totally humorless). I like "Cancer Sucks", which is written on the bracelets my sister got for us. Short and to the point. Because it really does suck.
I also like "Love Kills Cancer", which I saw on a t-shirt, because while love doesn't really "kill" cancer, it absolutely makes it suck a hell of a lot less.
Monday, February 27, 2012
Thursday, February 23, 2012
progress
He's feeling much better today! Andrew is still in the hospital, but may be able to get out of there tomorrow. Things were actually worse than we thought -- Dr. E. told us all of his blood counts were at zero (very bad), plus he had a nasty ear infection and no immunities to battle it. BUT, thanks to the amazing ministrations of the 4th floor AMC team, he is back on the road to semi-health.
Tuesday, February 21, 2012
bump in the road
We're back at AMC today unexpectedly. Andrew has had a rough time recovering from the last B cycle -- it's just so hard on the bone marrow, and we'd been warned that the effects would be cumulative. His hemoglobin, white count, and platelets are all critically low, and he's at very high risk for infection right now. Dr. E is re-admitting him today, and they will give him at least 2 units of blood and platelets, as well as antibiotics. She said he'll be here for a few days most likely, while they try to restore normal blood functioning. He doesn't look well at the moment -- very pale, thin and extremely weak. He was barely able to get into the car, and needed a wheelchair when we arrived to help him into the clinic offices. It's so hard to see him suffering like this, he is normally so physically strong. But I know that after a few units of blood he'll be feeling much, much better, and will hopefully have a few good days before starting round 5.
xo
L
xo
L
Wednesday, February 15, 2012
critical chemotherapy drug shortages!
http://www.sacbee.com/2012/02/14/4263342/the-leukemia-lymphoma-society.html
some of you have seen this from me already on Facebook, but for those who haven't please take a minute to copy and paste this link -- it's an article that appeared in today's news about the critical shortages of some chemo drugs used to treat blood cancers. Two of the drugs in critically short supply nationwide are methotrexate and cytarabine. Andrew receives these drugs every cycle!! They are vitally important to his recovery. The above article includes links to your local congressional representative -- the Leukemia and Lymphoma Society is urging people to contact their reps and ask them to take the necessary steps to end the drug shortages. I've already done this -- please take a minute and send a quick email, we would be so appreciative! These drugs have been vital to the progress he's made against the disease so far, and he's only halfway through!
thank you!!
xo
Linda
some of you have seen this from me already on Facebook, but for those who haven't please take a minute to copy and paste this link -- it's an article that appeared in today's news about the critical shortages of some chemo drugs used to treat blood cancers. Two of the drugs in critically short supply nationwide are methotrexate and cytarabine. Andrew receives these drugs every cycle!! They are vitally important to his recovery. The above article includes links to your local congressional representative -- the Leukemia and Lymphoma Society is urging people to contact their reps and ask them to take the necessary steps to end the drug shortages. I've already done this -- please take a minute and send a quick email, we would be so appreciative! These drugs have been vital to the progress he's made against the disease so far, and he's only halfway through!
thank you!!
xo
Linda
Monday, February 13, 2012
round 4 down!
This was a rough one, no doubt about it. The B cycle just sucks -- the protocol is a 24 hour IV infusion of methotrexate followed by a Lucovorin "rescue" to protect his kidneys from the methotrexate, 4 doses of cytarabine over 2 days, plus intrathecal infusions of both. Andrew spiked a high fever on the evening of day 2, and has felt awful since. But the fever is gone now, and his numbers are better than he feels, so they're letting him come home today -- hooray! They're giving him a pint of blood now, which should help him feel better, and then we're out of here -- if I can wake him up. ;)
We're due back on Thursday to see Dr. E (whom I now adore, after giving us such wonderful news), to check his blood levels and get the final dose of intrathecal cytarabine that completes the cycle. The on-call doctors had mentioned that they may possibly start phasing out some of the intrathecal infusions, as they might not be needed any longer, so we'll check with Dr. E and see what she says.
In the meantime, we have several neupogen injections chillin' in the fridge, just waiting for him to come home!
We're due back on Thursday to see Dr. E (whom I now adore, after giving us such wonderful news), to check his blood levels and get the final dose of intrathecal cytarabine that completes the cycle. The on-call doctors had mentioned that they may possibly start phasing out some of the intrathecal infusions, as they might not be needed any longer, so we'll check with Dr. E and see what she says.
In the meantime, we have several neupogen injections chillin' in the fridge, just waiting for him to come home!
Friday, February 10, 2012
good news at AMC!
Andrew was admitted yesterday to AMC for round 4, B-cycle. We saw Dr. E for our regular early appt., and she had the good news that the pathology was finally back. The hematology group had sent the path out for deeper testing (FISH gene test). The FISH had also been done in Kingston and Westchester, so we weren't expecting any kind of different news -- the biopsied node had some of the markers for Mantle Cell Lymphoma (MCL) but always tested negative on the FISH for the chromosome translocation that is usually present in MCL. Our previous doctors had been treating the cancer as if it were MCL anyway though, because it followed typical patterns, had some of the markers, and was very aggressive. I've learned that lymphomas rarely fit into a little box of "this one" or "that one" -- there can be all sorts of minute differences in individuals that make pathology very difficult to read and interpret. It's not anywhere near the exact science that we would like to believe it to be. And cancers do all sorts of strange things and mutate in unexpected ways, which is why, I suppose it's difficult to eradicate them.
But the AMC pathologists went a little farther and examined the pathology of Andrew's gall bladder as well. (If you remember back to Thanksgiving, Andrew's gall bladder was found to be infected, and was removed, delaying chemo and causing us all lots of stress!). As far as we know the gall bladder pathology had never been examined in relation to the lymphoma -- we had been told that it wasn't necessarily related to the lymphoma, other than the cancer had probably made an existing irritation worse. But I never felt completely comfortable with that, because reading I had done showed frequent GI tract involvement in cases of MCL -- it's one of the "patterns". So I just assumed that it was MCL -- the doctors were treating it as such, and it followed the patterns. The big problem with MCL is that it has a habit of returning after treatment, so we felt fairly certain that we would be fighting this all our lives.
But the AMC pathologists found something different. When they examined the gall bladder tissue, they found evidence of malignancies that pointed to a different kind of lymphoma altogether. The pathologists believe that Andrew's lymphoma actually began in the gall bladder, and may have been there for many, many years as a slow growing "indolent" MALT (mucosa- associated lymphoid tissue) lymphoma. MALT lymphomas most commonly begin in the stomach, but can begin in other GI organs as well, and are often caused by bacteria. The lymphoma transformed over time, and became very aggressive, spreading throughout his lymphatic system in the few months before he was diagnosed. By the time the gall bladder was removed it was completely infected -- indeed, the surgeon pronounced it "juicy"! Dr. E. said the FISH test came back negative for a third time, and that they believe it is not Mantle Cell, but a transformed lymphoma -- MALT to Large B Cell. Already, some reading I've done confirms that transformed MALT is very difficult to distinguish from MCL and DLBC. The good news about this diagnosis is that these types of lymphomas have an approximately 85-95% cure rate. Dr. E. said the hematology team recommends the same treatment that he's on -- finish the 8 rounds of R hyper-CVAD, and then he should be good to go -- no stem cell transplant needed, just follow up scans.
Obviously, we were thrilled to hear this. It all just makes so much sense, like pieces of a puzzle falling into place. The Westchester pathologists had also theorized that it started as a slow growing lymphoma, but this was the first we heard of the gall bladder connection. In their defense, Andrew was very sick when he arrived, and there wasn't time to do a lot of questioning -- they had to make their best guess and begin aggressive treatment immediately. So ironically, it seems that getting kicked out of Westchester by our insurance company may have been a blessing! We've gotten a fuller picture of the disease, and it may have prevented Andrew from going through an unnecessary SCT. At the very least, if it is some sort of sneaky MCL after all, he's still getting the appropriate treatment, and a SCT is an available option if there's a recurrence.
But interesting, isn't it, that it took three different teams of pathologists and hematologists (including a Sloan consult ), working off each other's information to put all the pieces together? Cancer is so unbelievably tricky.
A huge shout out to the 4th floor nursing staff at AMC -- they are taking such incredible care of Andrew, and are on top of everything!!
xoxo
L
But the AMC pathologists went a little farther and examined the pathology of Andrew's gall bladder as well. (If you remember back to Thanksgiving, Andrew's gall bladder was found to be infected, and was removed, delaying chemo and causing us all lots of stress!). As far as we know the gall bladder pathology had never been examined in relation to the lymphoma -- we had been told that it wasn't necessarily related to the lymphoma, other than the cancer had probably made an existing irritation worse. But I never felt completely comfortable with that, because reading I had done showed frequent GI tract involvement in cases of MCL -- it's one of the "patterns". So I just assumed that it was MCL -- the doctors were treating it as such, and it followed the patterns. The big problem with MCL is that it has a habit of returning after treatment, so we felt fairly certain that we would be fighting this all our lives.
But the AMC pathologists found something different. When they examined the gall bladder tissue, they found evidence of malignancies that pointed to a different kind of lymphoma altogether. The pathologists believe that Andrew's lymphoma actually began in the gall bladder, and may have been there for many, many years as a slow growing "indolent" MALT (mucosa- associated lymphoid tissue) lymphoma. MALT lymphomas most commonly begin in the stomach, but can begin in other GI organs as well, and are often caused by bacteria. The lymphoma transformed over time, and became very aggressive, spreading throughout his lymphatic system in the few months before he was diagnosed. By the time the gall bladder was removed it was completely infected -- indeed, the surgeon pronounced it "juicy"! Dr. E. said the FISH test came back negative for a third time, and that they believe it is not Mantle Cell, but a transformed lymphoma -- MALT to Large B Cell. Already, some reading I've done confirms that transformed MALT is very difficult to distinguish from MCL and DLBC. The good news about this diagnosis is that these types of lymphomas have an approximately 85-95% cure rate. Dr. E. said the hematology team recommends the same treatment that he's on -- finish the 8 rounds of R hyper-CVAD, and then he should be good to go -- no stem cell transplant needed, just follow up scans.
Obviously, we were thrilled to hear this. It all just makes so much sense, like pieces of a puzzle falling into place. The Westchester pathologists had also theorized that it started as a slow growing lymphoma, but this was the first we heard of the gall bladder connection. In their defense, Andrew was very sick when he arrived, and there wasn't time to do a lot of questioning -- they had to make their best guess and begin aggressive treatment immediately. So ironically, it seems that getting kicked out of Westchester by our insurance company may have been a blessing! We've gotten a fuller picture of the disease, and it may have prevented Andrew from going through an unnecessary SCT. At the very least, if it is some sort of sneaky MCL after all, he's still getting the appropriate treatment, and a SCT is an available option if there's a recurrence.
But interesting, isn't it, that it took three different teams of pathologists and hematologists (including a Sloan consult ), working off each other's information to put all the pieces together? Cancer is so unbelievably tricky.
A huge shout out to the 4th floor nursing staff at AMC -- they are taking such incredible care of Andrew, and are on top of everything!!
xoxo
L
Wednesday, February 8, 2012
Round 4 -- halfway there!!
We just picked up the grandparents at the airport -- 7:30 am appt tomorrow to be admitted for round 4. This round is the more difficult "B" cycle, but round 3A went so well that we're hopeful it will be easier this time. I'll update more tomorrow, but now off to get some sleep!!! xoxo
Saturday, February 4, 2012
blood count update
Everything is going well with Andrew's blood counts -- we went for the blood draw on Thursday, which showed all his levels starting to climb back up. He didn't need to have a transfusion after all, which was great news, but we have to go back for another blood draw on Monday.
Andrew's feeling pretty good - a bit tired and weak, but otherwise good. He was really pumped up with fluid when he was discharged -- he's gone from 180 lbs. to 150 lbs in a week, and now he feels more or less back to normal. He's just going to rest up for the next few days, enjoy the Superbowl, and get ready for round 4.
I apologize for slacking off on my updates -- we've been trying to settle back into our life, as much as possible, when Andrew's out of the hospital. :) Thank you for all of your continued love and support -- we're full of gratitude for our amazing friends and family!!
Andrew's feeling pretty good - a bit tired and weak, but otherwise good. He was really pumped up with fluid when he was discharged -- he's gone from 180 lbs. to 150 lbs in a week, and now he feels more or less back to normal. He's just going to rest up for the next few days, enjoy the Superbowl, and get ready for round 4.
I apologize for slacking off on my updates -- we've been trying to settle back into our life, as much as possible, when Andrew's out of the hospital. :) Thank you for all of your continued love and support -- we're full of gratitude for our amazing friends and family!!
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