Or it would be, but on the way home from the colonoscopy yesterday I started getting sick. Seems like just my daughter's cold so far -- fever is 98 and I'm not feeling too too terrible, so that's good. I never liked being sick but with my blood counts all fubar'ed it's apparently somewhat dangerous now, so there's some anxiety there. Took the day off, put the Xbox in the bedroom and just trying to recline as much as possible and drink OJ.
Figured out the hard way (or easy way, really) last night that mixing a Xanax with NyQuil is a great way to (a) sleep like a zombie and (b) snore so badly your wife leaves the bedroom. Which I feel bad about because apparently the cats kept her up all night and now she's the walking dead. Sigh.
I woke up during the colonoscopy yesterday. I didn't realize it until we were halfway home and I started getting my memory back, and was thinking "man I had some weird dreams during that frigging thing." Turns out after reading the paperwork that I did in fact wake up during it. That must have been awkward.
On the bright side they didn't find anything bad in there. Didn't think they would but the way medical news and I have been doing lately I'm almost surprised they didn't find something to hasten my demise a little faster.
Thursday, October 31, 2013
Monday, October 28, 2013
Not Good News.
Went in Friday to start my third cycle of chemotherapy and talk to my local oncologist about my results. There are two primary numbers for my particular flavor of multiple myeloma that I'm trying to reduce to close to zero, igG(S) and igG Kappa. Don't ask me what they mean -- they're just numbers to me representing this disease and the explanations are a bit beyond my comprehension. Anyhow, after 2 of 4 prescribed chemotherapy cycles I've only made a 25% dent in the igG(S) and really haven't changed the igG Kappa. According to Dr. F., that's not a good sign that the CyBorD chemotherapy regimen is working. He said generally you'd expect a more substantial impact up front for a variety of reasons, and that at this point it seemed likely that (a) I'd need to change regimens and (b) the chances of being ready to do the stem cell transplant by January are low.
Learning all of this was like getting slapped in the face with a bag of bricks. I just can't seem to catch a break with any of this, and I feel like I'm being railroaded towards a fairly unpleasant demise every time I get more news. I cried in the car driving home, something I haven't done in a long time -- even through the LexaPro it's just too much. All of the old thoughts about not being around for Ariana came rushing back, etc. I know there are other therapies and that it was wishful thinking to believe I could have any semblance of normalcy in life after being diagnosed with this, but whatever glimmers of hope I had for that just got trampled Friday.
On top of that this was a Zomeda infusion week, and sure enough starting Saturday that fun began again. Nothing as bad as that first cycle but really cloying bone and muscle pain that has lasted until today. I feel like I got thrown out of a car, if that helps paint the picture. New this month was/is that I feel like I sprained something in every muscle in my shoulder blades on my back ... just an odd sensation.
The plan is now to see what Dr. M. at the Mayo Clinic in Arizona thinks about everything when I get down there on the 12th. I'm thinking if we hit it off I'm going to have him take over my care as well -- I'm not sure what the point of Dr. K. in Rochester is when I've never met him and they're all on the same team. Minnesota is too far from me while Arizona is an easy trip at any time of the year, too hard to get to, can be inaccessible in winter and I have no connection with the doctor there. I'm sure he's a genius like the rest of these guys, but I like feeling like the people in charge of my life care. So we'll see.
I switched therapy to be twice a month since (at least up until this weekend) the LexaPro was having a significant impact. The timing of that, as well as the rest of all of this shit, is really making me feel like there's some force out there taking a direct interest in fucking me over as much and as insidiously as possible. I just don't get it.
Learning all of this was like getting slapped in the face with a bag of bricks. I just can't seem to catch a break with any of this, and I feel like I'm being railroaded towards a fairly unpleasant demise every time I get more news. I cried in the car driving home, something I haven't done in a long time -- even through the LexaPro it's just too much. All of the old thoughts about not being around for Ariana came rushing back, etc. I know there are other therapies and that it was wishful thinking to believe I could have any semblance of normalcy in life after being diagnosed with this, but whatever glimmers of hope I had for that just got trampled Friday.
On top of that this was a Zomeda infusion week, and sure enough starting Saturday that fun began again. Nothing as bad as that first cycle but really cloying bone and muscle pain that has lasted until today. I feel like I got thrown out of a car, if that helps paint the picture. New this month was/is that I feel like I sprained something in every muscle in my shoulder blades on my back ... just an odd sensation.
The plan is now to see what Dr. M. at the Mayo Clinic in Arizona thinks about everything when I get down there on the 12th. I'm thinking if we hit it off I'm going to have him take over my care as well -- I'm not sure what the point of Dr. K. in Rochester is when I've never met him and they're all on the same team. Minnesota is too far from me while Arizona is an easy trip at any time of the year, too hard to get to, can be inaccessible in winter and I have no connection with the doctor there. I'm sure he's a genius like the rest of these guys, but I like feeling like the people in charge of my life care. So we'll see.
I switched therapy to be twice a month since (at least up until this weekend) the LexaPro was having a significant impact. The timing of that, as well as the rest of all of this shit, is really making me feel like there's some force out there taking a direct interest in fucking me over as much and as insidiously as possible. I just don't get it.
Tuesday, October 22, 2013
Weird.
Had an appointment with my GI doctor today, the one who originally ordered the tests that led to the discovery that I had multiple myeloma. Was strange -- he teared up at some points during our conversation, which is now the second time I've experienced that. Much like my last impression when it happened with my original doctor at the Mayo Clinic, while it's nice to know your doctor is so connected to you and your situation, it's also somewhat of a confirmation that you're pretty well fucked.
They are scheduling a colonoscopy next week. I had something light up on the PET/CT scan that I did, and while nobody seems concerned (they had just done one a year ago and apparently things don't happen that fast in your colon), I'd like to be reassured nothing is going wrong there if nothing else. More importantly however my GI doctor believes since the Mayo Clinic requested it be done that they might not proceed with my transplant if it isn't. So one more thing to stress about, although given the fact that everything feels fine there (in fact better than usual, really, considering I was seeing him for recurring diverticulitis) I'm not too worried.
I am, however, utterly sick of doctors at this point. Nothing against any of mine, I just don't like medical stuff and I feel like my life is one big fucking doctor's appointment. I want to be normal again, to not have the weight of this nightmare constantly bending my back down like a backpack full of rocks. I want to be happy, and feel what "carefree" is like again. I don't remember it anymore, don't remember what it's like to have nothing to stress about (much less a terminal disease). I stare down the barrel of this every minute of every day now and it's so hard to muster the strength to keep going, to keep telling myself to get through the day and the one tomorrow. To convince myself I'll have plenty of time with my daughter and to do the things I wanted to do in life.
They are scheduling a colonoscopy next week. I had something light up on the PET/CT scan that I did, and while nobody seems concerned (they had just done one a year ago and apparently things don't happen that fast in your colon), I'd like to be reassured nothing is going wrong there if nothing else. More importantly however my GI doctor believes since the Mayo Clinic requested it be done that they might not proceed with my transplant if it isn't. So one more thing to stress about, although given the fact that everything feels fine there (in fact better than usual, really, considering I was seeing him for recurring diverticulitis) I'm not too worried.
I am, however, utterly sick of doctors at this point. Nothing against any of mine, I just don't like medical stuff and I feel like my life is one big fucking doctor's appointment. I want to be normal again, to not have the weight of this nightmare constantly bending my back down like a backpack full of rocks. I want to be happy, and feel what "carefree" is like again. I don't remember it anymore, don't remember what it's like to have nothing to stress about (much less a terminal disease). I stare down the barrel of this every minute of every day now and it's so hard to muster the strength to keep going, to keep telling myself to get through the day and the one tomorrow. To convince myself I'll have plenty of time with my daughter and to do the things I wanted to do in life.
Monday, October 21, 2013
Monday.
Well some resolution today ... for the past several weeks I've been dealing with trying to get my stem cell transplant consult set up in Arizona at the Mayo Clinic. I was supposed to be seeing a certain doctor that was a recommended colleague of Dr. M's from the Rochester Mayo Clinic, but with her leaving the MC things got left undone. A few weeks ago I was still trying to set this up and found out I finally had an appointment but it was with someone doing their fellowship, that they were treating it like an initial consult (which cost $6,000 in Rochester, so yeah, um "no"), etc.
Anyhow, I have been stressing out about this for several weeks now, trying to get people on the phone and coordinated, etc. I am supposed to have the transplant after 4 cycles (months) of chemotherapy, and with the 2nd cycle ending last week and them needing about 6 weeks to set up a transplant (giving me a 2 week window) I had to get this all worked out. So I FINALLY got this settled this morning and now have an appointment with the doctor I was originally supposed to be seeing. Amen.
Not that I'm all fired up to get a stem cell transplant, but at least now I'm seeing the intended doctor and I have one less thing to check off the to-do list.
Mentally and emotionally things have been weird lately. I think the LexaPro has definitely helped, so that's good. Ditto the therapy. It's still hard to shake this "fuck me, I have cancer" thought though, and the chemotherapy taking slightly longer to rebound from each week isn't helping.
Hoping for good numbers this week -- not sure what the implications are if they aren't, and I had a nightmare about that this morning. Fingers crossed.
Anyhow, I have been stressing out about this for several weeks now, trying to get people on the phone and coordinated, etc. I am supposed to have the transplant after 4 cycles (months) of chemotherapy, and with the 2nd cycle ending last week and them needing about 6 weeks to set up a transplant (giving me a 2 week window) I had to get this all worked out. So I FINALLY got this settled this morning and now have an appointment with the doctor I was originally supposed to be seeing. Amen.
Not that I'm all fired up to get a stem cell transplant, but at least now I'm seeing the intended doctor and I have one less thing to check off the to-do list.
Mentally and emotionally things have been weird lately. I think the LexaPro has definitely helped, so that's good. Ditto the therapy. It's still hard to shake this "fuck me, I have cancer" thought though, and the chemotherapy taking slightly longer to rebound from each week isn't helping.
Hoping for good numbers this week -- not sure what the implications are if they aren't, and I had a nightmare about that this morning. Fingers crossed.
Friday, October 18, 2013
Zzzzzz.
Every week chemotherapy seems to step up its game a little quicker. Feel weird tonight ... fatigued, but like everything on my body just weighs about 10 pounds more than usual or gravity is stronger. Hard to explain.
Monday, October 14, 2013
A week later.
I tend to write, at least blog-wise, to exorcise things. Perhaps I should write here more but sometimes the need to try to scrape something off of my soul by writing it down here is overwhelmed by the need to just not think about this shit anymore, if that makes sense.
It's been a hard week (they all seem to be since I found out about this disease) as things go. It's amazing how something like this can threaten your sanity, your relationships, etc. How difficult it can be to know what the right decisions are, and if you are being selfish if you play the "cancer card," how to gauge how much you can lean on your caregiver, if you should cut toxic people out of your life, etc. Little decisions and actions take on monumental weight in light of having cancer and the smallest thing can, at times, feel like it's what causes it all to fall apart.
I don't want to get into too many specifics here, just to keep things fresh and updated a bit. I'm dealing with some seriously annoying issues between the Mayo Clinic in Rochester and the one in Arizona, and why I'm not scheduled to see the doctor I was specifically recommended to see there or why they seem to want to start everything from scratch (repeat tests, etc.). There's a communication breakdown I am desperately trying to fix this week and it's stressing me out to say the least.
Healthwise I'm OK -- it feels like every week I feel a little bit more tired and achy, which I'm guessing is because as my immune system gets overwhelmed a bit by the chemotherapy it can't heal me as quickly. I've noticed, for instance, that while it used to just take a week for the giant red blotches where I get the Velcade shots to fade now I can still see 3 clearly and the fourth as well if I look hard enough.
I'm tired, though. I've been desperately working with my spouse to come up with ways to make things more peaceful on the weekends as it feels like either I'm in bad shape physically or we're going at it and that's fucking me up emotionally and mentally. Either way I don't feel rested after the weekends anymore and working 40-50 hours a week I'm not sure when I'm supposed to be healing and de-stressing. Like I told her, I feel like between her, all of the drama with our various parent's, having a toddler, my job, etc., I don't have time to have cancer.
Somehow I'm guessing it's going to demand a seat at the table regardless of my opinion, however.
It's been a hard week (they all seem to be since I found out about this disease) as things go. It's amazing how something like this can threaten your sanity, your relationships, etc. How difficult it can be to know what the right decisions are, and if you are being selfish if you play the "cancer card," how to gauge how much you can lean on your caregiver, if you should cut toxic people out of your life, etc. Little decisions and actions take on monumental weight in light of having cancer and the smallest thing can, at times, feel like it's what causes it all to fall apart.
I don't want to get into too many specifics here, just to keep things fresh and updated a bit. I'm dealing with some seriously annoying issues between the Mayo Clinic in Rochester and the one in Arizona, and why I'm not scheduled to see the doctor I was specifically recommended to see there or why they seem to want to start everything from scratch (repeat tests, etc.). There's a communication breakdown I am desperately trying to fix this week and it's stressing me out to say the least.
Healthwise I'm OK -- it feels like every week I feel a little bit more tired and achy, which I'm guessing is because as my immune system gets overwhelmed a bit by the chemotherapy it can't heal me as quickly. I've noticed, for instance, that while it used to just take a week for the giant red blotches where I get the Velcade shots to fade now I can still see 3 clearly and the fourth as well if I look hard enough.
I'm tired, though. I've been desperately working with my spouse to come up with ways to make things more peaceful on the weekends as it feels like either I'm in bad shape physically or we're going at it and that's fucking me up emotionally and mentally. Either way I don't feel rested after the weekends anymore and working 40-50 hours a week I'm not sure when I'm supposed to be healing and de-stressing. Like I told her, I feel like between her, all of the drama with our various parent's, having a toddler, my job, etc., I don't have time to have cancer.
Somehow I'm guessing it's going to demand a seat at the table regardless of my opinion, however.
Tuesday, October 8, 2013
Pondering.
In a weird mental place this week. Not sure how to even respond to it, but I guess that's why I go to therapy now once a week (to find out). Feel helpless, sad and a bit lost.
I can't avoid the feeling that this is all so surreal, that there either must be a mistake somewhere or that I'm going to go to the doctor and have them tell me it's all gone, miracle! But I know that's not only not realistic but beyond wishful thinking and into pure delusion. I have cancer.
I don't know why I have cancer, however, and the lack of causality and my focusing on it a bit this week is bothering me. It's impossible for me, being me, not to continuously go there, and it's frustrating to say the least. Doctors have no idea so they tell me things like "there's nothing you could have done differently," but I know that not to be true. Everything has a cause -- in this case science just doesn't have the answer yet. And it's probably something so complicated that the answer wouldn't be an obvious one, a cocktail of variables that collided just right to fuck me but good.
My daughter is back on a "daddy" all of the time kick, which is sadly bittersweet. I love it, and her attention and desire to get another hug or share things with me, but I wonder how long I get to enjoy it. I despise that this time has to be tainted like that but I'm not sure how to avoid it -- it's not like the thoughts are intentionally dug up, they just appear. We walk to the playground in the early evening as a family and it's hard to avoid the thoughts, as I watch her play and smile and giggle and experience, of how much more I get, of why this had to happen to me.
I need to get the fuck out of this mindset, I just haven't the slightest idea how.
On the bright side I think I got most of a good night's sleep last night ... that's a first in about 3 days, so hopefully I can repeat it tonight and get my mental, emotional and physical strength back up to at least some sort of base level soon.
I can't avoid the feeling that this is all so surreal, that there either must be a mistake somewhere or that I'm going to go to the doctor and have them tell me it's all gone, miracle! But I know that's not only not realistic but beyond wishful thinking and into pure delusion. I have cancer.
I don't know why I have cancer, however, and the lack of causality and my focusing on it a bit this week is bothering me. It's impossible for me, being me, not to continuously go there, and it's frustrating to say the least. Doctors have no idea so they tell me things like "there's nothing you could have done differently," but I know that not to be true. Everything has a cause -- in this case science just doesn't have the answer yet. And it's probably something so complicated that the answer wouldn't be an obvious one, a cocktail of variables that collided just right to fuck me but good.
My daughter is back on a "daddy" all of the time kick, which is sadly bittersweet. I love it, and her attention and desire to get another hug or share things with me, but I wonder how long I get to enjoy it. I despise that this time has to be tainted like that but I'm not sure how to avoid it -- it's not like the thoughts are intentionally dug up, they just appear. We walk to the playground in the early evening as a family and it's hard to avoid the thoughts, as I watch her play and smile and giggle and experience, of how much more I get, of why this had to happen to me.
I need to get the fuck out of this mindset, I just haven't the slightest idea how.
On the bright side I think I got most of a good night's sleep last night ... that's a first in about 3 days, so hopefully I can repeat it tonight and get my mental, emotional and physical strength back up to at least some sort of base level soon.
Monday, October 7, 2013
Another rough one.
Hard weekend (they all seem to be getting that way lately). Had a lot of fatigue on Friday and Saturday, and then Saturday night my stomach decided to stage a coup on the rest of my body and my sleep schedule. Woke up at 3 am about to vomit, which I managed to avoid with a Zofran but was up the rest of the night with abdominal pain. Threw up several times later in the morning anyhow so that was somewhat of a waste.
Hung out in bed most of Sunday trying to get some rest but just couldn't sleep.
Called the Mayo Clinic today to see where we're at with me getting out to Arizona to meet the doctor Dr. M. wanted to do my stem cell transplant, and Dr. M. left last week. Sad, but knew this was coming. Sounds like things are progressing, albeit slowly, to get me out to Arizona. Hope they light a fire under things because I can't just book a flight next-day and pop out there.
Super-stressed this week, hope things improve.
Hung out in bed most of Sunday trying to get some rest but just couldn't sleep.
Called the Mayo Clinic today to see where we're at with me getting out to Arizona to meet the doctor Dr. M. wanted to do my stem cell transplant, and Dr. M. left last week. Sad, but knew this was coming. Sounds like things are progressing, albeit slowly, to get me out to Arizona. Hope they light a fire under things because I can't just book a flight next-day and pop out there.
Super-stressed this week, hope things improve.
Friday, October 4, 2013
Back at Disneyland.
Forgot my damned Kindle so blogging from my phone instead to pass the time. The infusion center is busy today, but at least it's fairly quiet. I've talked about it before but the usual symphony of suffering in here just makes a depressing experience more depressing.
I wish I had something to exorcise by writing today but I just don't ... I'm on a fairly even keel as far as things go. Certainly not happy but not in a dark place by any means. Just sadly resigned, if I have to "be" something today.
Wish I could be something else ... Like not needing to be here, not knowing this world exists. Most people have no concept of how much their blissful ignorance protects them. I miss that, perhaps most of all. Well that and the feeling that I had some control over my destiny and that I could put some faith in probability and causality.
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