So I got woke up at 2 yesterday afternoon about a dozen hours later with a call for help from a visiting nurse tending to my mother and the H word was mentioned. Hospice. Once again my sister has failed to keep anyone informed.
And a thought about my I can't believe I'm still here remark, perhaps an observation about survivors guilt ? Still thinking about this.
So I'm sitting down taking a break out in the garage and I just blurt out, "I can't believe I'm still here". Not here at RP, but anywhere as in above ground in real space.
I'm reaching the end of my work - life rope. A physical decline as well as mental burnout. Toss in now official dementia with my mother. Issues with my sister and my mother.
Well, I got this out, so now to let it sit and take another look at the above in a few days and see what it means.
Had the CT last Friday and it's been a long week waiting for the results. Negative for cancer. Yay !
Usually get the results in two days max so it did have me wondering, a lot. Doesn't explain the masses or anything else currently happening but the big one is off the table.
I'll be talking to the team Wed. My guess is the IVIG treatment. Still want to crawl out of my skin. Benadryl is my new best friend. I was hoping it would also knock me out at night to help sleep but, nope.
Whew. Now back to just being. One day at a time. I can deal with that.
Had the CT last Friday and it's been a long week waiting for the results. Negative for cancer. Yay !
Usually get the results in two days max so it did have me wondering, a lot. Doesn't explain the masses or anything else currently happening but the big one is off the table.
I'll be talking to the team Wed. My guess is the IVIG treatment. Still want to crawl out of my skin. Benadryl is my new best friend. I was hoping it would also knock me out at night to help sleep but, nope.
Whew. Now back to just being. One day at a time. I can deal with that.
Glad to hear you're still chugging and the chips are falling your way!
Location: Really deep in the heart of South California Gender:
Posted:
Oct 18, 2024 - 8:32pm
kurtster wrote:
Had the CT last Friday and it's been a long week waiting for the results. Negative for cancer. Yay !
Usually get the results in two days max so it did have me wondering, a lot. Doesn't explain the masses or anything else currently happening but the big one is off the table.
I'll be talking to the team Wed. My guess is the IVIG treatment. Still want to crawl out of my skin. Benadryl is my new best friend. I was hoping it would also knock me out at night to help sleep but, nope.
Whew. Now back to just being. One day at a time. I can deal with that.
Had the CT last Friday and it's been a long week waiting for the results. Negative for cancer. Yay !
Usually get the results in two days max so it did have me wondering, a lot. Doesn't explain the masses or anything else currently happening but the big one is off the table.
I'll be talking to the team Wed. My guess is the IVIG treatment. Still want to crawl out of my skin. Benadryl is my new best friend. I was hoping it would also knock me out at night to help sleep but, nope.
Whew. Now back to just being. One day at a time. I can deal with that.
Had the CT last Friday and it's been a long week waiting for the results. Negative for cancer. Yay !
Usually get the results in two days max so it did have me wondering, a lot. Doesn't explain the masses or anything else currently happening but the big one is off the table.
I'll be talking to the team Wed. My guess is the IVIG treatment. Still want to crawl out of my skin. Benadryl is my new best friend. I was hoping it would also knock me out at night to help sleep but, nope.
Whew. Now back to just being. One day at a time. I can deal with that.
Had the CT last Friday and it's been a long week waiting for the results. Negative for cancer. Yay !
Usually get the results in two days max so it did have me wondering, a lot. Doesn't explain the masses or anything else currently happening but the big one is off the table.
I'll be talking to the team Wed. My guess is the IVIG treatment. Still want to crawl out of my skin. Benadryl is my new best friend. I was hoping it would also knock me out at night to help sleep but, nope.
Whew. Now back to just being. One day at a time. I can deal with that.
Happy 72nd bday and 16th anniversary of my diagnosis to me. On the plus side, I got to see ZZ Top the next day in one of our great small halls. Bonus was that it was just them standing there playing. No props or special effects, just the three of them, playing their hearts out.
Now 1 year into my fourth overtime, some funny shit is happening, that has happened before. Noticed it about two months ago, finally brought it to my NP's attention last week and I have a CT scheduled for this coming Friday to see what lights up. Then we'll do a biopsy. This will be tricky because the swollen nodes are right at where the legs fold when you sit. The entire lymph node must be removed. No needle biopsies, need the whole thing. There is a whole bunch of stuff going through that area to increase the degree of difficulty for the surgeon in addition to just cutting into the lymphatic system and disrupting that, and then being the type of area where you cannot but help to bend, healing will be interesting.
This piled on top of the stress of dealing with my 97 mother who has gone off the deep end and simply put we are now somewhat estranged without going into it. Just moved the last bit of the things from her house yesterday and stuffed it into the garage somehow. Last part of the process that has been going on for several months as she has decided to sell her house and go into some sort of assisted living.
Progress has been made since my Stage IV diagnosis when at the time only 20% make it past the first 5 years. Now I am told it has improved to 50%. When I got diagnosed the longest survivor I heard of then was 14 years. It is totally incurable and survivors commonly have recurrences until they pass, from it or something else. My last was about 8 years ago. I could backscroll to find out exactly but I'm not in the mood to do that yet.
I went and found my stash of percocet to take when I have the inevitable bone marrow tap in my backside. It will be my fourth and they actually hurt pretty intensely, but as I've heard, no pain, no gain ...
There, the catharsis is underway.
I've always said since I began this odyssey that I'll drain the oceans to keep that glass half full and that I will always land on my feet until I don't.
dang kurt, i can hardly imagine
thanks for sharing and take care
Happy 72nd bday and 16th anniversary of my diagnosis to me. On the plus side, I got to see ZZ Top the next day in one of our great small halls. Bonus was that it was just them standing there playing. No props or special effects, just the three of them, playing their hearts out.
Now 1 year into my fourth overtime, some funny shit is happening, that has happened before. Noticed it about two months ago, finally brought it to my NP's attention last week and I have a CT scheduled for this coming Friday to see what lights up. Then we'll do a biopsy. This will be tricky because the swollen nodes are right at where the legs fold when you sit. The entire lymph node must be removed. No needle biopsies, need the whole thing. There is a whole bunch of stuff going through that area to increase the degree of difficulty for the surgeon in addition to just cutting into the lymphatic system and disrupting that, and then being the type of area where you cannot but help to bend, healing will be interesting.
This piled on top of the stress of dealing with my 97 mother who has gone off the deep end and simply put we are now somewhat estranged without going into it. Just moved the last bit of the things from her house yesterday and stuffed it into the garage somehow. Last part of the process that has been going on for several months as she has decided to sell her house and go into some sort of assisted living.
Progress has been made since my Stage IV diagnosis when at the time only 20% make it past the first 5 years. Now I am told it has improved to 50%. When I got diagnosed the longest survivor I heard of then was 14 years. It is totally incurable and survivors commonly have recurrences until they pass, from it or something else. My last was about 8 years ago. I could backscroll to find out exactly but I'm not in the mood to do that yet.
I went and found my stash of percocet to take when I have the inevitable bone marrow tap in my backside. It will be my fourth and they actually hurt pretty intensely, but as I've heard, no pain, no gain ...
There, the catharsis is underway.
I've always said since I began this odyssey that I'll drain the oceans to keep that glass half full and that I will always land on my feet until I don't.
Happy 72nd bday and 16th anniversary of my diagnosis to me. On the plus side, I got to see ZZ Top the next day in one of our great small halls. Bonus was that it was just them standing there playing. No props or special effects, just the three of them, playing their hearts out.
Now 1 year into my fourth overtime, some funny shit is happening, that has happened before. Noticed it about two months ago, finally brought it to my NP's attention last week and I have a CT scheduled for this coming Friday to see what lights up. Then we'll do a biopsy. This will be tricky because the swollen nodes are right at where the legs fold when you sit. The entire lymph node must be removed. No needle biopsies, need the whole thing. There is a whole bunch of stuff going through that area to increase the degree of difficulty for the surgeon in addition to just cutting into the lymphatic system and disrupting that, and then being the type of area where you cannot but help to bend, healing will be interesting.
This piled on top of the stress of dealing with my 97 mother who has gone off the deep end and simply put we are now somewhat estranged without going into it. Just moved the last bit of the things from her house yesterday and stuffed it into the garage somehow. Last part of the process that has been going on for several months as she has decided to sell her house and go into some sort of assisted living.
Progress has been made since my Stage IV diagnosis when at the time only 20% make it past the first 5 years. Now I am told it has improved to 50%. When I got diagnosed the longest survivor I heard of then was 14 years. It is totally incurable and survivors commonly have recurrences until they pass, from it or something else. My last was about 8 years ago. I could backscroll to find out exactly but I'm not in the mood to do that yet.
I went and found my stash of percocet to take when I have the inevitable bone marrow tap in my backside. It will be my fourth and they actually hurt pretty intensely, but as I've heard, no pain, no gain ...
There, the catharsis is underway.
I've always said since I began this odyssey that I'll drain the oceans to keep that glass half full and that I will always land on my feet until I don't.
Got to call it a night. Patty lost her oldest brother last night and her older sister went through some surgery for breast cancer the day before. So some thoughts for peace of mind for Patty would be appreciated as she is too weak and fragile to fly out home for the funeral. Sigh ...
Thanks for letting me have this place to get this stuff out of my head. It's much too crowded inside of it right now.
Got to call it a night. Patty lost her oldest brother last night and her older sister went through some surgery for breast cancer the day before. So some thoughts for peace of mind for Patty would be appreciated as she is too weak and fragile to fly out home for the funeral. Sigh ...
I am very glad for the good fortune you and Blue Heron Druid have enjoyed but this bit
"The name of the game is still to be alive so you can benefit from the next advancement, same as with any other cancer or disease"
cuts at me. My sister-in-law had an aggressive case of sarcoma attacking her connective tissue, first on her thigh and then on her chest wall. As far as I can tell the only sure way still to survive a sarcoma is by having it cut it out. The surgeon determined that he couldn't safely remove the tumors when they'd reached her chest wall so Catherine had to start chemotherapy.
Just as the tumors began to show resistance to the chemo, I read about immune therapy treatments, wherein you sequence the genome of the tumor, find genetic vulnerabilities and splice an immune response to those vulnerabilities into the immune system. At the time, though, immune therapy was not ready to handle solid tumors like Cath's. She died about 5 years ago.
About 1-2 months ago I read about upcoming immune therapy trials for sarcomas and I gritted my teeth. Life is partly about loss but sometimes that part just sucks.
Yes, indeed. Those who go before us help to serve those that follow. That is one of the first things I learned about the blood cancers once I truly began to get a grip on what I was involved with. I learned that many of the great advances in chemotherapy came out of developing treatments for Leukemias and Lymphomas. Those treatments that worked for the blood cancers were eventually tried on solid tumor patients.
Patty's daughter's invasive melanoma just had the same kind of advance. 4 or 5 years ago, she would have been toast. However, she bumped into the right doctor who basically is the pioneer in melanoma immunotherapy and is treating her with immunotherapy that is in its infancy. Now a year or so after being put on the treatment she is cancer free at the moment. He was the needle in the haystack. Only it was he who found her. Her case was presented to him by some other doctors to see if he might be interested in taking her on. She languished in several hospitals in SoCal before getting lucky. You would think that there would be a large group of oncologists dealing with melanoma in the sunny state of California. Sadly that is not the case.
In my case, when it was time to harvest my stem cells for my transplant, the chemo I had leading up to the transplant was so brutal, Hyper-CVAD, it destroyed that part of my system that generates stem cells in the bone marrow. The methotrexate was the big culprit there. If not for a drug that had just come out of trials the month before, I may not have had my transplant. Going back to some of my old journals I posted here along the way, I rediscovered what actually happened then. Your memory gets kinda weirded out over time. I was the second person in the country to get the OK to take this new drug. I just happened to be using one of only four hospitals in the country authorized to administer it as well. It worked. I am here today as a result and the success I had with it helped others to gain approval for its use on them. At the same time, one of the people I encountered on this journey was a woman from Canton, Ohio, just an hour and a half south of the Cleveland Clinic who had similar issues needing a transplant and was told by the doctor treating her that there was nothing more that could be done for her and that "she needed to quickly get her affairs in order". She refused to give up and did some digging on her own and found her own way to the CCF and underwent a successful transplant of her own. Proximity and access had nothing to do with her success. Her doctor was simply unaware of what was going on in the branches of medicine he was practicing in, to be kind to this doctor. And even if you make it to the point of physically being able to have the transplant, you have to pass psychological screening to make sure that you are mentally able and stable enough to have one. The chemo that you undertake for the 8 consecutive days prior to you having your's or a donor's stem cells or bone marrow put into you makes everything else you had before that seem like a walk in the park.
The autologous stem cell transplant (where I am my own donor) that I had was still more experimental than mainstream 10 years ago. Now it is pretty much a mainstream thing. And now we finally have "The Right To Try Law" which gives even more hope and options to the terminally ill.
It is somewhat surreal to talk about this in such a matter of fact conversational tone. Yet, it is what it is. As some of you here may know my wife has 23 or so years of sobriety and has sponsored many women along her journey through sobriety including heroin addicts. Now she is sponsoring two women who are also cancer caregivers. One of her husband and another whose brother has moved up here from Atlanta to be treated at the CCF. She is helping these ladies and we are both helping others on their journeys with cancer. The shit is everywhere we look. And one of my sisters also has a much milder form of NH-Lymphoma than my own. She is not handling her's well at all, despite having the resource of me and my wife for her battle. She seems hell bent on dying. She pours through the net and if she sees a symptom of something, she surely must have it and is killing / torturing our 92 yo mother in the process with her woe is me, I'm dying, I'm dying pity plays for attention. She is actually doing rather well in spite of her self. She happens to be arriving in town tomorrow, Saturday for her latest check up with our doctor. Yes, my doctor is her doctor. She almost screwed that up for me. I got her to come up her to save my mother from being dragged to Texas to care for my sister. My sister is so helpless (not) that she has our mother waiting on her hand and foot. Patty and I have more or less given up on my sister because we haven't got any time to waste on people who are playing games and not interested in living anymore, so to speak. My mother is slowly starting to see the light.
Got to call it a night. Patty lost her oldest brother last night and her older sister went through some surgery for breast cancer the day before. So some thoughts for peace of mind for Patty would be appreciated as she is too weak and fragile to fly out home for the funeral. Sigh ...
Thanks for letting me have this place to get this stuff out of my head. It's much too crowded inside of it right now.
