Since William has begun blogging about his Lymphoma experience I figure there's no need in me continuing here. If I need to get anything off my chest I know your phone numbers and email addresses.
You can keep up with his condition and observations about his treatment at http://www.dubious-maxims.blogspot.com/
You can also feel free to visit my blog at www.abraxanminis.blogspot.com
Wednesday, February 25, 2009
Friday, January 30, 2009
Oh where to begin...
This has been one helluva week. It's difficult to know where to begin which is why it's taken so long for an update.
To set your minds at rest, William is okay. I have a hard time spitting out "he's okay" because he's only "okay" as a person with lymphoma can be. He's not "okay" and won't be "okay" for quite a while. He is, thankfully, "improving" steadily. After two years of clean PET scans perhaps this lead bowling ball in my stomach will melt and I'll be able to say, or hear, "He's doing okay!".
He's losing hair pretty substantially now. While we don't really care about the cosmetic aspects of that, the hair loss is a constant reminder of the lethal beast we are battling and the toxicity of our best weapons. We try to laugh about it. "Yanno honey. I've never seen your upper lip..." and "I'm afraid to blow my nose because I'm afraid my nose hair will come out." But the truth is, that each time he reaches up, combs his fingers through his hair and comes away with 20 or 30 hairs, our stomachs drop.
The "Neulasta" portion of the tale:
Because the chemo is lowering his immune system, as chemo does to most patients, he is getting injections of a drug called Neulasta to boost his blood count. He could explain this drug to me ten times a day and still most of that information oozes rapidly out of my brain. The drug has something to do with recombinant DNA. It's a heavy duty drug. However, it is not made of platinum, gold and diamond dust and therefore, does not warrant it's $2,480.00 (per injection) price tag. Look up the statistics on how many people receive chemo each year and figure that 90 to 95% of those patients are going to suffer a low blood count. If every office is like ours and won't give the chemo with a lowered blood count, then figure every one of those patients is having to fork over at least $4,800.00 per month for Neulasta.
The only reason we know how much these injections are is because we had to change insurance companies at the beginning of January. We had to use the conversion insurance that would cover the pre-existing illnesses. We're paying over $1,500.00 per month just for the two of us, for this new insurance, but I won't go there now, that's another whole blog post or three. Suffice to say it's lousy coverage and we will not be keeping it once he's clear of cancer.
Anyway, because we have new insurance the doctor's office had to be sure we hadn't just printed up fake insurance cards on card stock (because that's all the insurance company provided, flimsy paper cards, damned things should be 24 carat gold embossed). The insurance coordinator came back and said she couldn't get confirmation on our insurance. She said she got a message saying the office was closed "due to holiday snow" (that is a precise quote). They asked us if we wanted to pay the $2480.00 out of pocket along with the 750.00 chemo (yes, the shot is three times more than the chemo treatment.) "Good god, we can't pay that in one go."
I looked at my card. The insurance company is in Indiana. I told her "No way are they closed for snow. They're in Indiana. They get snow all winter, every winter. This is why none of us can find parking in the metro area because the spaces are taken up by people from Indiana. I'll call them."
Here is a lesson I've learned. When you are in dire need of speaking to an actual person and can't wait for useless recorded information or wander aimlessly through a phone menu maze, not when you are just late to meet a friend at Starbucks because THAT would be really cheesy of you, but when you are in dire need of speaking to a human quickly, listen through the menu and if you hear "for all other questions..." choose that option.
I ignored the options for "benefits" and "verification" and chose "for all other questions...". I was instantly connected to a real human and handed my phone to the insurance coordinator. I then followed her to her desk and sat with her while she was transferred to various desks, went through a couple of phone menus, before finally getting through to the person who could verify our insurance and tell us if we needed to have the treatments pre-certified. Sitting by her side like a loyal old dog prevented her from giving up on the madness of being transferred all over India to find out if we had insurance.
Straightening out this mess took about an hour. When I got back to the chemo lab the nurses had taken the I.V. out. William says he overheard the nurses talking about how waiting too long might allow a clot to form or something but when I asked them why they'd taken it out they told me "We were told the insurance couldn't be verified and you couldn't pay for the Neulasta". If it had been later that same day I'd have bitten her, but I had "get the chemo done with" tunnel vision and didn't think about the ramifications of what she had just said. Wednesday turned so sour for me that I actually didn't think about the fact that if you can't afford Neulasta and you don't have insurance YOU DIE, until late Thursday.
One more thing about Neulasta. The side effect (yeah, more side effects) is bone pain. So, within an hour post-Neulasta William begins to ache which progresses to a goodly amount of pain all over which lasts 2 or 3 days. Just doesn't seem fair does it?
To set your minds at rest, William is okay. I have a hard time spitting out "he's okay" because he's only "okay" as a person with lymphoma can be. He's not "okay" and won't be "okay" for quite a while. He is, thankfully, "improving" steadily. After two years of clean PET scans perhaps this lead bowling ball in my stomach will melt and I'll be able to say, or hear, "He's doing okay!".
He's losing hair pretty substantially now. While we don't really care about the cosmetic aspects of that, the hair loss is a constant reminder of the lethal beast we are battling and the toxicity of our best weapons. We try to laugh about it. "Yanno honey. I've never seen your upper lip..." and "I'm afraid to blow my nose because I'm afraid my nose hair will come out." But the truth is, that each time he reaches up, combs his fingers through his hair and comes away with 20 or 30 hairs, our stomachs drop.
The "Neulasta" portion of the tale:
Because the chemo is lowering his immune system, as chemo does to most patients, he is getting injections of a drug called Neulasta to boost his blood count. He could explain this drug to me ten times a day and still most of that information oozes rapidly out of my brain. The drug has something to do with recombinant DNA. It's a heavy duty drug. However, it is not made of platinum, gold and diamond dust and therefore, does not warrant it's $2,480.00 (per injection) price tag. Look up the statistics on how many people receive chemo each year and figure that 90 to 95% of those patients are going to suffer a low blood count. If every office is like ours and won't give the chemo with a lowered blood count, then figure every one of those patients is having to fork over at least $4,800.00 per month for Neulasta.
The only reason we know how much these injections are is because we had to change insurance companies at the beginning of January. We had to use the conversion insurance that would cover the pre-existing illnesses. We're paying over $1,500.00 per month just for the two of us, for this new insurance, but I won't go there now, that's another whole blog post or three. Suffice to say it's lousy coverage and we will not be keeping it once he's clear of cancer.
Anyway, because we have new insurance the doctor's office had to be sure we hadn't just printed up fake insurance cards on card stock (because that's all the insurance company provided, flimsy paper cards, damned things should be 24 carat gold embossed). The insurance coordinator came back and said she couldn't get confirmation on our insurance. She said she got a message saying the office was closed "due to holiday snow" (that is a precise quote). They asked us if we wanted to pay the $2480.00 out of pocket along with the 750.00 chemo (yes, the shot is three times more than the chemo treatment.) "Good god, we can't pay that in one go."
I looked at my card. The insurance company is in Indiana. I told her "No way are they closed for snow. They're in Indiana. They get snow all winter, every winter. This is why none of us can find parking in the metro area because the spaces are taken up by people from Indiana. I'll call them."
Here is a lesson I've learned. When you are in dire need of speaking to an actual person and can't wait for useless recorded information or wander aimlessly through a phone menu maze, not when you are just late to meet a friend at Starbucks because THAT would be really cheesy of you, but when you are in dire need of speaking to a human quickly, listen through the menu and if you hear "for all other questions..." choose that option.
I ignored the options for "benefits" and "verification" and chose "for all other questions...". I was instantly connected to a real human and handed my phone to the insurance coordinator. I then followed her to her desk and sat with her while she was transferred to various desks, went through a couple of phone menus, before finally getting through to the person who could verify our insurance and tell us if we needed to have the treatments pre-certified. Sitting by her side like a loyal old dog prevented her from giving up on the madness of being transferred all over India to find out if we had insurance.
Straightening out this mess took about an hour. When I got back to the chemo lab the nurses had taken the I.V. out. William says he overheard the nurses talking about how waiting too long might allow a clot to form or something but when I asked them why they'd taken it out they told me "We were told the insurance couldn't be verified and you couldn't pay for the Neulasta". If it had been later that same day I'd have bitten her, but I had "get the chemo done with" tunnel vision and didn't think about the ramifications of what she had just said. Wednesday turned so sour for me that I actually didn't think about the fact that if you can't afford Neulasta and you don't have insurance YOU DIE, until late Thursday.
One more thing about Neulasta. The side effect (yeah, more side effects) is bone pain. So, within an hour post-Neulasta William begins to ache which progresses to a goodly amount of pain all over which lasts 2 or 3 days. Just doesn't seem fair does it?
Wednesday, January 21, 2009
Hi ho Hi ho
It's been back to work week. William managed to avoid further side effects over the weekend and went back to work on Monday. It's so unfair that he has to work as bad as he feels. Even though he is greatly improved, he still feels awful. It's just a much less awful awful than he felt prior to the start of chemo, if that makes any sense.
The cancer and the chemo leave him exhausted and weak. He's weak and tired when he wakes up and leaves for work, drives clear across town, works 8 to 9 and 1/2 hours, drives the 40 miles home, and can do little other than eat a light dinner and lie down. Some nights he sits up at his computer for a little while before giving up and heading to bed. He doesn't think he's brave, but the truly courageous never do. He has to ride that rank bull not for a mere eight seconds but 24 hours a day, 7 days a week and hold down a job.
He's having difficulty sleeping at night. He has stopped drinking coffee, those of you who know him well are likely as amazed as we are by that fact. He has a cup in the morning before leaving for work and that's it for the day. The generic Ambien he was prescribed has no effect on him. Perhaps he's just too exhausted and weak to sleep? We don't know why, we just know we've tried every trick we can find and nothing has helped so far. He settles for cat napping through the night and calling it good enough. I'm sure that's not helping the weakness and exhaustion either.
He had an office visit with his Oncologist today and got a beaming report on the diminished state of the monster. The swollen nodes on the left side of his neck are completely gone. The nodes on the right side of his neck are almost gone. The profound swelling in his left thigh is down about a full 1/3 from where it was and below the knee his calf is only slightly puffier looking than the normal leg.
The nodes in his torso must be greatly reduced as well because he's gotten quite a bit slimmer in the middle. When all of this started back in November and as it got so much worse in December, his face had begun to look slim, his arms and shoulders were getting so thin I could see his shoulder bones and his right leg was getting almost scrawny. The monster was making some parts waste away while ballooning out in others. We couldn't understand at first why he seemed to be gaining weight in the middle while losing so much everywhere else. Now we know. As the chemo melts the swollen nodes, his left leg swelling reduces as well as the swollen nodes in his abdomen and chest.
The Oncologist tells us that William is doing as well as we can expect at this point and said that it was remarkable to see this amount of improvement so quickly. I think it's the chemo combined with the positive energy from all our many friends and family coming to us from all around the world.
The cancer and the chemo leave him exhausted and weak. He's weak and tired when he wakes up and leaves for work, drives clear across town, works 8 to 9 and 1/2 hours, drives the 40 miles home, and can do little other than eat a light dinner and lie down. Some nights he sits up at his computer for a little while before giving up and heading to bed. He doesn't think he's brave, but the truly courageous never do. He has to ride that rank bull not for a mere eight seconds but 24 hours a day, 7 days a week and hold down a job.
He's having difficulty sleeping at night. He has stopped drinking coffee, those of you who know him well are likely as amazed as we are by that fact. He has a cup in the morning before leaving for work and that's it for the day. The generic Ambien he was prescribed has no effect on him. Perhaps he's just too exhausted and weak to sleep? We don't know why, we just know we've tried every trick we can find and nothing has helped so far. He settles for cat napping through the night and calling it good enough. I'm sure that's not helping the weakness and exhaustion either.
He had an office visit with his Oncologist today and got a beaming report on the diminished state of the monster. The swollen nodes on the left side of his neck are completely gone. The nodes on the right side of his neck are almost gone. The profound swelling in his left thigh is down about a full 1/3 from where it was and below the knee his calf is only slightly puffier looking than the normal leg.
The nodes in his torso must be greatly reduced as well because he's gotten quite a bit slimmer in the middle. When all of this started back in November and as it got so much worse in December, his face had begun to look slim, his arms and shoulders were getting so thin I could see his shoulder bones and his right leg was getting almost scrawny. The monster was making some parts waste away while ballooning out in others. We couldn't understand at first why he seemed to be gaining weight in the middle while losing so much everywhere else. Now we know. As the chemo melts the swollen nodes, his left leg swelling reduces as well as the swollen nodes in his abdomen and chest.
The Oncologist tells us that William is doing as well as we can expect at this point and said that it was remarkable to see this amount of improvement so quickly. I think it's the chemo combined with the positive energy from all our many friends and family coming to us from all around the world.
Wednesday, January 14, 2009
Chemo Round Deux
William's stomach pain started improving by Monday and yesterday he felt so much better that we went out to breakfast after he had his pre-treatment bloodwork. Sitting in the hard restaurant chair was uncomfortable for his hip and back but it was so nice to be able to get out and do something normal he didn't care about that discomfort. We haven't been out of this house together for anything other than medical appointments and Christmas Eve at Mom's house since Thanksgiving. It was good.
Today, his chemo went well but he didn't sleep well last night so chemo really took a lot out of him this time. He came home ate a little bit of lunch and was snoring within 10 minutes.
His doctor said he's responding really really well to the treatment. The lymph node swelling has gone down markedly which really surprised the Doctor. The blood count done yesterday was only slightly low. The doctor was not concerned about that at all but the Chemo people decided to start giving him Neulasta injections just to be on the safe side and keep the counts up. William remembered to ask the doctor about the bone marrow biopsy this time and we are all excited to report that no lymphoma cells were found in the marrow sample.
Okay, cross fingers, toes, eyes or whatever that the chemo doesn't make him sick this time around and that he continues to improve over the weekend.
As always I sure do appreciate hearing from you all and thanks so much for all the positive vibes. They're working well.
Love,
jean
Today, his chemo went well but he didn't sleep well last night so chemo really took a lot out of him this time. He came home ate a little bit of lunch and was snoring within 10 minutes.
His doctor said he's responding really really well to the treatment. The lymph node swelling has gone down markedly which really surprised the Doctor. The blood count done yesterday was only slightly low. The doctor was not concerned about that at all but the Chemo people decided to start giving him Neulasta injections just to be on the safe side and keep the counts up. William remembered to ask the doctor about the bone marrow biopsy this time and we are all excited to report that no lymphoma cells were found in the marrow sample.
Okay, cross fingers, toes, eyes or whatever that the chemo doesn't make him sick this time around and that he continues to improve over the weekend.
As always I sure do appreciate hearing from you all and thanks so much for all the positive vibes. They're working well.
Love,
jean
Friday, January 9, 2009
I know I know I'm sorry
I promised updates and I'm not holding up my end of the bargain.
It's been a crummy week. There. I said it. His abdominal pain escalated. His mother took him to the doctor for me while I ran to the grocery to buy everything that screamed "HIGH FIBER" at me because we'd been told the pain was likely caused by constipation.
The doctor palpated his stomach and found what he thought were small blockages so he sent them to Walgreens for Milk of Magnesia.
Well, the update is that between the Benefiber, Activia Yogurt, stool softeners, green leafy veggies and Milk of Magnesia (twice) he's finally pooping up a storm. Unfortunately, this has not helped his stomach pain as he's still racing for the medicine cabinet every 6 hours and would take them every 4 if I weren't such a harpy about it.
Also, his leg is hurting again. Not as bad as it was, but it's pain, it's back and that's f-ing bad news to both of us.
Maybe he'll still have a job in a couple of weeks??????? They're being patient now, but they can't be patient forever.
It's been a crummy week. There. I said it. His abdominal pain escalated. His mother took him to the doctor for me while I ran to the grocery to buy everything that screamed "HIGH FIBER" at me because we'd been told the pain was likely caused by constipation.
The doctor palpated his stomach and found what he thought were small blockages so he sent them to Walgreens for Milk of Magnesia.
Well, the update is that between the Benefiber, Activia Yogurt, stool softeners, green leafy veggies and Milk of Magnesia (twice) he's finally pooping up a storm. Unfortunately, this has not helped his stomach pain as he's still racing for the medicine cabinet every 6 hours and would take them every 4 if I weren't such a harpy about it.
Also, his leg is hurting again. Not as bad as it was, but it's pain, it's back and that's f-ing bad news to both of us.
Maybe he'll still have a job in a couple of weeks??????? They're being patient now, but they can't be patient forever.
Sunday, January 4, 2009
Weekend update
Well, William has had a tough weekend. He'd felt great, just a little bit run down, Wednesday and Thursday. Friday he started feeling bad. Saturday he started having some severe stomach pain which has continued all day today. We're able to control this pain with pain pills somewhat, but it's a disappointment. He's also started running a mild fever. Thus, first on the agenda tomorrow is a call to the doctor.
Hopefully we'll hear that the stomach pain is a side effect from the chemo and not some fresh hell. Hopefully they'll give him medication for the fever which is probably the sign we were watching for that signals a lowered white cell count.
The good news is that the crushing pain he was enduring prior to the chemo is still gone, and the swelling in his leg is slowly lessening.
He'd hoped to go back to work tomorrow.
Financially, he needs to go back to work tomorrow but it's not going to happen.
Hopefully we'll hear that the stomach pain is a side effect from the chemo and not some fresh hell. Hopefully they'll give him medication for the fever which is probably the sign we were watching for that signals a lowered white cell count.
The good news is that the crushing pain he was enduring prior to the chemo is still gone, and the swelling in his leg is slowly lessening.
He'd hoped to go back to work tomorrow.
Financially, he needs to go back to work tomorrow but it's not going to happen.
Friday, January 2, 2009
One down, twelve or so to go.
William had his first chemo treatment Wednesday morning. We both lost sleep Tuesday night worrying over this unknown thing. We'd read about it and knew what to expect, then lost sleep expecting it all.
Our expectations were enhanced by the literature he was given regarding the drugs that would be used. I will not name the various chemicals here simply because I can't. Their names were about a foot long and I've long since forgotten them. Mainly what I remember was William's reaction to reading the drug literature. At one point he abruptly closed the leaflet and said "I'm not going to read any more of that one." At another point he said "my god, this one is related to Mustard Gas." He asked me to stay until they started the chemo so I did.
We were the first people to occupy the chemo lab. There were 25 to 30 puffy recliners in rows. The room slowly filled while we were waiting for the first two "pre-chemo" I.V. bags to drain. One bag was to help prevent nausea during the treatment, the other bag was a steroid and something else that would also help prevent nausea. They did their job. William didn't even feel faintly ill during the treatment. This event we were both looking forward to and dreading, turned out to be a real non-event. He didn't feel anything burning his veins, there was no nausea, no side effects at all. He dozed and read for 2 hours.
We were told that the pre-chemo drugs would stay in his system for a couple of days and would continue to help with the nausea. We got a prescription to help with nausea as well, adding to the overflow in our now burgeoning medicine cabinet. Two years ago, our medicine cabinet held Aspirin, Tylenol, Pepcid, Alka-Seltzer, Excedrin and Nyquil at most. Now we have blood pressure pills, blood thinners, cholesterol pills, pain pills, sleeping pills, anti-nausea pills, anti-anxiety and anti-depression (the need for these being exacerbated by the reasons we need all the other pills), pills and powders for constipation (caused by the lymphoma as well as the anti-nausea pills and pain pills), plus all of our old standbys. Two years ago our medicines took up about 4 coffee cups worth of space in what used to be the narrow 3 shelf coffee cup cabinet. Now there is no space for coffee cups on those 3 shelves. Better living through chemistry.
We've been waiting for the side effects to begin, but so far so good. William says he feels kind of heavy and feels kind of like something is sitting on him. Once in a while he gets slightly nauseated, but he's only vomited once and got right over it. What has us overjoyed for the moment is that the soul crushing, crippling pain, that had driven him to two pain pills every 4 hours, has disappeared. We're hoping to the heavens that this is not just a temporary respite caused by the I.V. steroid pre-chemo treatment. He has only taken 2 pain pills since the morning prior to the chemo and those he took for help sleeping, not pain. Two entire days with no pain other than a mild headache. We're pretty damned ecstatic about that. Prior to the chemo he was unable to bend his left hip at all anymore. He walked, agonizingly, just dragging his immensely swollen leg because he couldn't lift it. Now, he can lift it about 3 inches off the floor while standing.
If we had to enter the new year in this manner, these improvements are the best we could have hoped for. If these improvements are temporary, caused by the steroids and anti-nausea I.V.s, then at least he's had two entire days without pain and able to hold down food. We'll happily take whatever good days we're given.
Our expectations were enhanced by the literature he was given regarding the drugs that would be used. I will not name the various chemicals here simply because I can't. Their names were about a foot long and I've long since forgotten them. Mainly what I remember was William's reaction to reading the drug literature. At one point he abruptly closed the leaflet and said "I'm not going to read any more of that one." At another point he said "my god, this one is related to Mustard Gas." He asked me to stay until they started the chemo so I did.
We were the first people to occupy the chemo lab. There were 25 to 30 puffy recliners in rows. The room slowly filled while we were waiting for the first two "pre-chemo" I.V. bags to drain. One bag was to help prevent nausea during the treatment, the other bag was a steroid and something else that would also help prevent nausea. They did their job. William didn't even feel faintly ill during the treatment. This event we were both looking forward to and dreading, turned out to be a real non-event. He didn't feel anything burning his veins, there was no nausea, no side effects at all. He dozed and read for 2 hours.
We were told that the pre-chemo drugs would stay in his system for a couple of days and would continue to help with the nausea. We got a prescription to help with nausea as well, adding to the overflow in our now burgeoning medicine cabinet. Two years ago, our medicine cabinet held Aspirin, Tylenol, Pepcid, Alka-Seltzer, Excedrin and Nyquil at most. Now we have blood pressure pills, blood thinners, cholesterol pills, pain pills, sleeping pills, anti-nausea pills, anti-anxiety and anti-depression (the need for these being exacerbated by the reasons we need all the other pills), pills and powders for constipation (caused by the lymphoma as well as the anti-nausea pills and pain pills), plus all of our old standbys. Two years ago our medicines took up about 4 coffee cups worth of space in what used to be the narrow 3 shelf coffee cup cabinet. Now there is no space for coffee cups on those 3 shelves. Better living through chemistry.
We've been waiting for the side effects to begin, but so far so good. William says he feels kind of heavy and feels kind of like something is sitting on him. Once in a while he gets slightly nauseated, but he's only vomited once and got right over it. What has us overjoyed for the moment is that the soul crushing, crippling pain, that had driven him to two pain pills every 4 hours, has disappeared. We're hoping to the heavens that this is not just a temporary respite caused by the I.V. steroid pre-chemo treatment. He has only taken 2 pain pills since the morning prior to the chemo and those he took for help sleeping, not pain. Two entire days with no pain other than a mild headache. We're pretty damned ecstatic about that. Prior to the chemo he was unable to bend his left hip at all anymore. He walked, agonizingly, just dragging his immensely swollen leg because he couldn't lift it. Now, he can lift it about 3 inches off the floor while standing.
If we had to enter the new year in this manner, these improvements are the best we could have hoped for. If these improvements are temporary, caused by the steroids and anti-nausea I.V.s, then at least he's had two entire days without pain and able to hold down food. We'll happily take whatever good days we're given.
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