The Cancer Update
Ok, I figured I'd put all of this in one place. I have friends now that didn't know be pre-cancer and even though I will talk about it all day to whoever will listen there are questions popping up here and there. I thought this would be the place to put the answers.
I have stage IV Follicular Lymphoma. I was diagnosed in late September 2015.
I had been feeling off for months and had gotten a sleep study in the Spring and gotten a CPAP, this made me feel much better, but then I started sliding again. I also started a blood pressure medication that summer. Anyway, I had gone in in July because I wasn't feeling super awesome and I found a lump in my neck. I was given an antibiotic and told to get blood work. One thing and another and it took me a while to get that work done. And when I did it they only did one of two tests. When I went back several weeks later to get it done again I got a call from my physician a couple days later. It was in the morning and she told me to go get a CAT scan that day, and if they couldn't get me in to call her and she'd push it through. This was September 20th or so. I've lost 20 pounds without really noticing or doing anything and I'm anemic.
So, CAT scan goes through, then I'm called by my doctor's fill in on her day off and told I'm going to see an oncologist on Friday. I probably have Lymphoma...
That Friday I meet my oncologist, he's one of the best in the nation and his LPN has had the same disease. I also end up in the cancer center all day getting poked, prodded, and sampled. They try to get a bone marrow sample, which is a miserable thing when you already feel like shit, it took about 45 minutes of poking around and it was profoundly unpleasant.
I have three more appointments set at that point, one for a PET scan, and two more office visits by Wednesday. I still don't know if I have going to die tomorrow cancer, or mildy annoying cancer or what. I avoid Web MD and such like the plague.
On Monday I find out it's like Follicular Lymphoma, Grade 2 Stage IV. OK, so it won't kill me, at least not directly.
Everyone I've told is a mess, I'm a mess, and I vacillate between wanting not to talk about it at all or wanting to talk about it for hours.
On the 19th I get an armpit biopsy and a PET scan. I'm operating mostly normally, going to work between appointments and stuff. But I don't remember from here on as clearly as I'd like. I'm down 31 pounds since the end of July. My appetite is garbage and I'm now moving to full sugar sodas, and milkshakes and that just to get calories in.
October 2nd, I send an email to my coworkers and friends at work about what's going on and ask them not to talk to me about it unless I bring it up. I miss one and she comes blubbering over to feel bad for me. I almost lose it in the office. I can keep it all under control when I'm the one controlling the conversation, but when people start to cry it's rough. I have a note ( I posted my progress on a private message board I'm part of) that I ate lunch, walked back to my desk and now I'm exhausted and need a break.
They tell me the treatment plan on the 4th. Every three weeks I'll have two days of chemo for six sessions. I'll get a port put in and we'll go at it. My first treatment is on the 6th. My post about it has multiple typos and I had one of the worst days of my life. I had multiple reactions to the chemo and the radiator was stuck on in the first room they put me in, and then there was a spider in the light in the second one. I was the first person into the facility and the last one out on the first day of treatment, second day goes slightly better.
White blood cells are measured on a scale where normal is like 3.8 to 9, I'm at .2. I'm severely neutrapenic. I'm still working right now, but I'm down about 40 pounds, except for the couple days where I was up almost 9 in water weight from the IVs and they made me take a serious diuretic.
On the 9th my wife and my mother go to France. This had been planned for months and I wasn't letting me being sick stop her. If it was going to get worse we needed her to be as ready to go as she could be. Vickie was my rock through this whole thing and I'm not sure if I could have made it without her.
I'm working, taking care of the house, and taking care of our youngest daughter now. And I am falling apart. I had to keep going back to the cancer center for fluids, and then back to work. On the 15th I'm talking about how I can deal with this stuff without worrying her and needing someone to just come over and do dishes. That's also when they start giving me blood because my blood is garbage.
On the 16th I leave the office early. It's 30+ degrees out and I'm wearing jeans and a long sleeve and complaining about being cold. Sometime after Vickie gets home I get the flu. This is also while they are trying to get my levels up by giving me bag after bag of blood. On the 21st I get sent to the hospital. My spleen is huge and it's eating all the good blood and spitting out bad blood.
I'm in the hospital until the 4th of November. I was sure I remembered being in a whole month, but it was two weeks. It felt like a lifetime, Vickie stayed with me almost the whole time. Meredith was staying with good friends of ours so everything was sort of ok.
November 16th Vickie and I go to a state park to look at camping spots. I remember this really well as a quiet day in the mess. The 17th I start chemo again. By the end of the month I'm out of the neutropenia and I have an apple.
By the December treatment I'm feeling so much better it's insane. I'm looking forward to going back to work and energy levels are increasing. I don't remember much about November, and didn't post much either. Vickie says I spent a lot of time staring at nothing and sleeping.
In January and November I'm a normal person who just happens to go get chemo once a month. The treatments aren't all that bad, and the worst part is the steroids keeping me awake all night. In March my immune system gave up for a bit, but it recovered.
I make it to the one year point done with Chemo and feeling better than I had in years. It's likely I went undiagnosed for at least a year if not more, so it had been a while.
Fast forward to July '18 and that's when we start the treatments I'm doing now.
I have stage IV Follicular Lymphoma. I was diagnosed in late September 2015.
Follicular lymphoma is a cancer of the lymphatic system. It develops from B lymphocytes (white blood cells that fight infection). This type of lymphoma usually grows very slowly. It is difficult to cure but is usually kept under control for many years with treatment needed only from time-to-time.
I had been feeling off for months and had gotten a sleep study in the Spring and gotten a CPAP, this made me feel much better, but then I started sliding again. I also started a blood pressure medication that summer. Anyway, I had gone in in July because I wasn't feeling super awesome and I found a lump in my neck. I was given an antibiotic and told to get blood work. One thing and another and it took me a while to get that work done. And when I did it they only did one of two tests. When I went back several weeks later to get it done again I got a call from my physician a couple days later. It was in the morning and she told me to go get a CAT scan that day, and if they couldn't get me in to call her and she'd push it through. This was September 20th or so. I've lost 20 pounds without really noticing or doing anything and I'm anemic.
So, CAT scan goes through, then I'm called by my doctor's fill in on her day off and told I'm going to see an oncologist on Friday. I probably have Lymphoma...
That Friday I meet my oncologist, he's one of the best in the nation and his LPN has had the same disease. I also end up in the cancer center all day getting poked, prodded, and sampled. They try to get a bone marrow sample, which is a miserable thing when you already feel like shit, it took about 45 minutes of poking around and it was profoundly unpleasant.
I have three more appointments set at that point, one for a PET scan, and two more office visits by Wednesday. I still don't know if I have going to die tomorrow cancer, or mildy annoying cancer or what. I avoid Web MD and such like the plague.
On Monday I find out it's like Follicular Lymphoma, Grade 2 Stage IV. OK, so it won't kill me, at least not directly.
Follicular lymphoma typically affects people aged over 50, with the average age at diagnosis being 60 years. Most people with follicular lymphoma are aged over 65 and it is slightly more common in men than in women.
Everyone I've told is a mess, I'm a mess, and I vacillate between wanting not to talk about it at all or wanting to talk about it for hours.
On the 19th I get an armpit biopsy and a PET scan. I'm operating mostly normally, going to work between appointments and stuff. But I don't remember from here on as clearly as I'd like. I'm down 31 pounds since the end of July. My appetite is garbage and I'm now moving to full sugar sodas, and milkshakes and that just to get calories in.
October 2nd, I send an email to my coworkers and friends at work about what's going on and ask them not to talk to me about it unless I bring it up. I miss one and she comes blubbering over to feel bad for me. I almost lose it in the office. I can keep it all under control when I'm the one controlling the conversation, but when people start to cry it's rough. I have a note ( I posted my progress on a private message board I'm part of) that I ate lunch, walked back to my desk and now I'm exhausted and need a break.
They tell me the treatment plan on the 4th. Every three weeks I'll have two days of chemo for six sessions. I'll get a port put in and we'll go at it. My first treatment is on the 6th. My post about it has multiple typos and I had one of the worst days of my life. I had multiple reactions to the chemo and the radiator was stuck on in the first room they put me in, and then there was a spider in the light in the second one. I was the first person into the facility and the last one out on the first day of treatment, second day goes slightly better.
White blood cells are measured on a scale where normal is like 3.8 to 9, I'm at .2. I'm severely neutrapenic. I'm still working right now, but I'm down about 40 pounds, except for the couple days where I was up almost 9 in water weight from the IVs and they made me take a serious diuretic.
On the 9th my wife and my mother go to France. This had been planned for months and I wasn't letting me being sick stop her. If it was going to get worse we needed her to be as ready to go as she could be. Vickie was my rock through this whole thing and I'm not sure if I could have made it without her.
I'm working, taking care of the house, and taking care of our youngest daughter now. And I am falling apart. I had to keep going back to the cancer center for fluids, and then back to work. On the 15th I'm talking about how I can deal with this stuff without worrying her and needing someone to just come over and do dishes. That's also when they start giving me blood because my blood is garbage.
On the 16th I leave the office early. It's 30+ degrees out and I'm wearing jeans and a long sleeve and complaining about being cold. Sometime after Vickie gets home I get the flu. This is also while they are trying to get my levels up by giving me bag after bag of blood. On the 21st I get sent to the hospital. My spleen is huge and it's eating all the good blood and spitting out bad blood.
I'm in the hospital until the 4th of November. I was sure I remembered being in a whole month, but it was two weeks. It felt like a lifetime, Vickie stayed with me almost the whole time. Meredith was staying with good friends of ours so everything was sort of ok.
November 16th Vickie and I go to a state park to look at camping spots. I remember this really well as a quiet day in the mess. The 17th I start chemo again. By the end of the month I'm out of the neutropenia and I have an apple.
By the December treatment I'm feeling so much better it's insane. I'm looking forward to going back to work and energy levels are increasing. I don't remember much about November, and didn't post much either. Vickie says I spent a lot of time staring at nothing and sleeping.
In January and November I'm a normal person who just happens to go get chemo once a month. The treatments aren't all that bad, and the worst part is the steroids keeping me awake all night. In March my immune system gave up for a bit, but it recovered.
I make it to the one year point done with Chemo and feeling better than I had in years. It's likely I went undiagnosed for at least a year if not more, so it had been a while.
Fast forward to July '18 and that's when we start the treatments I'm doing now.
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