Just keep plugging away at this. It will all be over soon enough and you'll look back on it with a very different viewpoint. I look back two years and it seems an eternity ago , and not that big of a deal. It's odd, I know, but it's in the past. Yours will be,too. Hang in there.
Eh why not post an update.
Still don't have picture results back from the midway scan but the text results sounds good. I'll get to see them Friday.
This has been the hardest cycle in a while. I think it's a combination of the weather, the meds, and the added stress of the 9 year old who still acts like a toddler and thinks the entire universe exists to please her.
Very hungover feeling all week, very bloated, very tired.
I'm going to ask, and I know they're going to say no, but I'm still going to ask if I can just have the $100k instead of the drugs at this next treatment. It would certainly help me feel better and breathe easier.
9 more weeks, 4 more infusions. I'm ready for it to be over.
In reply to RevRico :
Great that you're past the half way point. Let us know what it looks like Friday.
Happy Birthday Rev. How are you doing with treatment lately?
In reply to OHSCrifle :
Thank you.
Just gonna give the full sized update post for this week, but short answer, it's getting a little rough.
I didn't get to see the updated scan pictures Friday, which annoys me, but everything treatment wise physically seems to be going well. Supposedly I'm in remission already. Next PET scan will be the end of September early October, should give me the all clear or the oh E36 M3.
That said, the treatments themselves and the follow ups are getting worse. 3 more left after this past Monday's, and I'm ready for it to be done. I suspected I would get the cumulative effect and it really feels that way.
Hair loss has spread and accelerated. It was limited to beard, nose, and groin, now my eyebrows, armpits, and general body hair are all thinning out or gone. My sex drive is gone and has been for a while, and there's no guarantee it comes back after treatment, that could be a problem. Peripheral neuropathy is limited to my finger tips, stage 1 because I'm not dropping stuff yet just numb, so there's a good chance of it going away 6-12 months after treatment finishes. My weight has stayed roughly the same throughout, i was expecting and hoping to have dropped a few, but steady around 250lb.
I'm back on neulasta because my ANC (absolute neutrophil count) numbers were low enough they almost didn't want to treat me Monday. Comes with it's own fun side effects, luckily for me I don't get the bone pain and the nausea only lasts as long as the injection.
But the week of treatment, I take 2 Sennokate a day and 10mg of melatonin at night with no result from either. Waking up every hour with non working plumbing has gotten really old the past few months. The constant heartburn for a week isn't very enjoyable either, but it does let me eat foods I usually avoid because I'm going to have heartburn anyway. The after effects when the steroids wear off are getting just as bad, but I do think that's related to the heat as well. No more emotional rollercoaster thankfully, just more of an energy rollercoaster.
Still, compared to what I saw growing up, and so many other people's reactions, I guess it isn't too bad. I haven't been sick despite living with a strepthroat super carrier, no throwing up or major loss of appetite, not withering away.
The weekend of the 4th we went to a party at the neighbors. I stayed home till 5 or so to let the sun get behind the trees and I was still dead on my feet by about 9, actually headed home before the fireworks started. I put a day in at my buddies garage when we changed the tires up on the SRT and was down for 2 days after. By the end of the day I couldn't even get the last wheel back on the hub at lift height, this was wheel lift 12 or 13 over the day though because of the problems we ran into.
I'm ready for it to be over, and it sounds like it will be, 7.5 more weeks.
I feel like I've aged a good bit the last few months, and seeing the pics like that makes me look it too. I still can't bring myself to shave the beard no matter how bad it looks.
But, I'm 37 today. Probably the closest to looking my age I've been in a while. No definite plans for the day, we might go out to dinner, might wait and just try a new pizza place over the weekend. Too hot to fish, so probably just going to lounge around with the kid whose been on vacation the past week.
Happy birthday. Glad to hear you're still making progress, no matter how hard it's getting.
Best of luck and medical science to you in the second half.
yup, any progress is good progress. Just keep swimming!
Happy birthday, Rev!
Happy birthday Rev! I'm glad your still just, powering through with it.
I've said it before and I'll say it again, I'm berkeleying proud of you. Happy birthday.
Your journey sounds par for the course, it changes you, it ages you, it slows.you way the berkeley down but it gives you a perspective and strange appreciation of subtle things that you otherwise would've never noticed. When the weather isn't crap I recommend getting some comfortable all terrain footwear, comfortable loose fitting clothing that promotes airflow, a double insulated water bottle with a mouth wide enough to pack ice into and to start taking going on some hikes. It's not about the physical aspect, though it assist with that, but the stimulation and seeing the passing of seasons of you traverse the same trails every few weeks. Bonus if you get a hiking buddy who drives to join you as some enlightenment really makes them enjoyable.
It's cost 24 weeks, $4500 out of pocket, almost $1.5 million to insurance, 15lbs, 60% of my body hair, 80% of my energy, almost all feeling and strength from my hands and toes, my sense of smell and taste, and my ability to sleep more than 3 hours a day. All because after a bout of flu-rona at Thanksgiving my back hurt so bad I couldn't walk and I'd ignored a lump in my thigh for years. No more chemo for me, ever, no matter what. But today is the last infusion, so hopefully in 3-4 weeks I can start feeling human again.
Congrats on your last treatment! It's a major milestone, now its onward and upward!!!
Congrats and hope for the best getting back to where you were before.
In reply to RevRico :
berkeley yeah! I'm glad you've had your last infusion. Here's to regrowing that beard!
If this is out of line, please correct me and tell me I'm an shiny happy person. You said never again when it comes to chemo/radiopathy. Would you mind sharing a bit more?
I've only had an aunt that went through cancer, and she lived 1800 miles away so I never really saw the effects of the "treatment."
Also, I'm super happy you're doing better!
In reply to z31maniac :
Honestly, as I sit here getting my last med put in my port, that's a good question
I haven't been too beat up through this, compared to close friends and family members, my treatment has actually been pretty mild with minimal side effects.
I still consider the cure worse than the disease. Until the one lymph node or whatever it was shifted and started pressing on a nerve in my back, I had no idea I had any issues whatsoever other than the lump on my thigh.
I'm arguably in the worst physical shape I've ever been in. My hands and fingers don't really work, my mind is foggy, I've lost a ton of strength in my hands and arms, my knees don't always want to be knees, I haven't had sex in 2 months and I haven't wanted to have sex in almost 4. Random rashes that come and go, massive changes in tastes of food and drink, constantly being tired and not able to sleep. Week long bouts of constipation after infusion followed by week long bouts of anti constipation have really taken their toll as well.
To fix what exactly? Nobody ever gave me a timeline or idea of what would happen had we not done any treatments. I most likely would have destroyed my liver with Tylenol trying to make my back not hurt, but the chemo drugs have done their damage just the same. But had this gone untreated, another 5 years? 10? 20?
The next 5 to 7 days are going to suck, I'm going to be bloated, wired, and miserable. Then a week of not being able to trust a fart and stumbling downstairs to the bathroom in the middle of every night. I'm curious to see what comes after, because it's been 24 weeks of the same.
My next scan is September 23, to see how everything has shaped up and cleaned up. My next Dr appointment is 10/4 to go over the test results and see what the future brings, like getting this damn port out and over with.
Well, 6 days out from my last treatment and the neuropathy is worse than ever, despite not even getting the medicine that is tied most closely to it at my last visit.
Tried to open a Sprechers orange cream bottle yesterday for 5 minutes. Couldn't pop it like a beer bottle with my lighter, wound up using 2 of those silicone grip mat things. Can barely carry 4 dinner plates from the cabinet to the table. Need both hands to move a frying pan.
And that's on top of the constant, hard to describe, pain between the forearm bones.
Dropped a steak knife the other night, moving to get my foot out of the way I slipped and almost took the other 3 right in the throat.
Physical therapy Friday is going to be fun I'm sure.
Everything tastes gray, so I'm going between eating nothing for days and not stopping eating. Because that's clearly the healthy option.
E36 M3 better be healing, because this is ridiculous. Good thing I don't have the energy to dwell on it or my mental health would probably be even worse.
Who knew finishing up would be the hardest part?
In reply to RevRico :
You're at the worse point right now. I hope that a year from now you look back and think it's all worth it this time or any other time.
In reply to RevRico :
Sorry it sucks, have you tried ice cream? Maybe there is a flavor that wont taste gray.
In reply to Stampie :
I'm hoping.
For the people whose neuropathy actually goes away, it seems to happen in 3-6 months. There is a not zero amount of people who have it forever though, and that prospect is... Not promising, But also tied to other things like diabetes, kidney disease, peripheral artery disease. While there is family history with those things, I've been in the clear, so far.
I haven't really worried about things this whole time, or worried about long term effects, and I think that's what's finally catching up to me. Like the slog of getting through everything is over so all the little E36 M3 I've been ignoring can creep though.
One day at a time. They might feel like groundhog Day, climbing the walls of my bedroom everyday, but one day at a time.
In reply to RevRico :
Rev , or Mr Rico?
I don't post much here, but trust me I've been following.
I guess I'm just chiming in to give you some hope at a silver lining. A year and a half ago I went in for eye surgery , I'd been having issues for a while and as a person in my 30s I wasn't thrilled at having my eye cut open while not fully sedated. I went in super bummed out. I was told follow up operations are needed 80% of the time ...but you know what. I got lucky, or blessed, or some turn of phrase. Because you know what. I ended up in the 18-20% that didn't need the second round.
I guess I just want you to know I'm rooting for you, and sometimes 1:5 odds are pretty good odds .
Good vibes for getting through this man, sounds rough as hell in a way I can't even imagine. You're living it and here's hoping it's all on the upswing from this point!
I think a way to look at the day to day struggle in all this is to just focus on today. Each day, you just have today to work through. Tomorrow will be there and the stuff that comes with it as well.
Hope you feel more like yourself soon.
Sending some more positive vibes GRM brother.
Stampie said:In reply to RevRico :
You're at the worse point right now. I hope that a year from now you look back and think it's all worth it this time or any other time.
Just keep focused on this part and this part only...
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