Chemo #2 went well. My white blood cell count was low last week, but this morning’s draw said
I was good to go for the session. It was faster, not the 7 hours, more like 4-1/2. I was able to tolerate taking in the fluids at a faster rate, without immediate side effects (however, that comes over the next several days at home).
I met a woman there, a middle-school principal with roughly the same form of C. Her’s was at stage 4 though because it affected an organ (her stomach) and was below and above her diaphragm (also in her neck). But that was ten years ago. The cancer came back
(in her face . . . .swollen, deforming cheek!). She comes in for chemo-lite (no nausea, no hair loss) once every three months . . . .been doing that for 1 year with 1 year to go, to keep her lymph nodes clean. And her face is back to normal. Her hair grew back and was thick and long (and dyed . . . having turned gray).
I suspect I will have to keep an eye on my disease with regular check ups (and Cat-scans) for the rest of my life . . . .it may return (if I lick it this time, which I am optimistic about) . . . .but
like this woman, it should not be debilitating, and just something one lives with . . . .just like other manageable diseases. Very encouraging.
She hated the bone marrow biopsy too, agreeing with me that that was the most painful part of the physical ordeal. She hated losing her hair, but kept her eyebrows and lashes (no razor needed anywhere else). She lost arm hair too. Everyone is different on that account. I can stow away my razor now, and I haven’t had to pluck my eyebrows in a while, nothing’s growing there . . . .no doubt my inherited Italian mustache will continue sprouting as well as nose hairs (ah, the rub), and a few chinny-chin-chin whiskers. Figures.
That cute short do I just had is thinning fast, and I’m sporting bald patches now . . . .I should look perfect for Halloween night. I shake my head and it’s like the trees in my yard in the wind...
. . . .fluttering down, leaving trails, on my pillow, on sink tops, in the sinks, in my bowl of ice cream last night. It’s like having several cats or furry dogs in the house. I’ll just have to get over it and get used to bald, hats and kerchiefs all the time . . . . . .and ask Paul and Kelly to please vacuum after me.
Thursday, October 29, 2009
Tuesday, October 13, 2009
Hit by a Mack truck from the inside
Without the poetry, here’s how I am . . . one week after first Chemo session:
My legs and butt have almost vanished. Down to 95 lbs last I looked. Need to get Boost or other supplement and hope to get out today to do that bit of shopping. I’ve been exhausted, achy, just can’t do much. I was able to iron a couple of shirts and make homemade soup yesterday. But most of the time I feel yucky, tired, constipated, strained eyes, headache, everything hurts (even my teeth and jaw (chewing hurts), my whole rib cage). Taking a bath is a chore but I do it every day (can’t stand not to bathe daily). Walking and standing for stretches is painful.
My left side (hip) still is super sore . . . .even a cotton t-shirt touching that area feels like sand paper. I had some swelling (ankles, lower legs abdomen) but that’s a whole lot better. Do I sound like a wreck?
If I don’t take the little pill at night, I can’t sleep. And I was hoping to wean myself of the anti-nausea pills, but that ain’t working. I try to eat more often . . . .I get this eat or get sick feeling (like when I was pregnant) so I eat . . . sometimes it even works.
There’s no way I could be at work. I’m just so glad I don’t have to work and I have a comfortable home to rest in. I love looking out my kitchen/family room windows with all the wildness, the leaves changing . . . a good view.
And speaking of work, I just heard that the library will hold my job till the end of January. If things improve (like I’m up to it) they will let me put in some time during leave, but not without a Dr’s note . . . .big boss pointed out just how germy a library is (he’s right).
I get blood work tomorrow, and see the surgeon on Friday (he’s just gonna look at the port implant). This kind of C can’t really be operated on . . . it has to shrink. Next session two weeks from today . . . dread it and bring it on feelings . . . .just want to get healthy again.
Did you get the Mack's license plate number?
My legs and butt have almost vanished. Down to 95 lbs last I looked. Need to get Boost or other supplement and hope to get out today to do that bit of shopping. I’ve been exhausted, achy, just can’t do much. I was able to iron a couple of shirts and make homemade soup yesterday. But most of the time I feel yucky, tired, constipated, strained eyes, headache, everything hurts (even my teeth and jaw (chewing hurts), my whole rib cage). Taking a bath is a chore but I do it every day (can’t stand not to bathe daily). Walking and standing for stretches is painful.
My left side (hip) still is super sore . . . .even a cotton t-shirt touching that area feels like sand paper. I had some swelling (ankles, lower legs abdomen) but that’s a whole lot better. Do I sound like a wreck?
If I don’t take the little pill at night, I can’t sleep. And I was hoping to wean myself of the anti-nausea pills, but that ain’t working. I try to eat more often . . . .I get this eat or get sick feeling (like when I was pregnant) so I eat . . . sometimes it even works.
There’s no way I could be at work. I’m just so glad I don’t have to work and I have a comfortable home to rest in. I love looking out my kitchen/family room windows with all the wildness, the leaves changing . . . a good view.
And speaking of work, I just heard that the library will hold my job till the end of January. If things improve (like I’m up to it) they will let me put in some time during leave, but not without a Dr’s note . . . .big boss pointed out just how germy a library is (he’s right).
I get blood work tomorrow, and see the surgeon on Friday (he’s just gonna look at the port implant). This kind of C can’t really be operated on . . . it has to shrink. Next session two weeks from today . . . dread it and bring it on feelings . . . .just want to get healthy again.
Did you get the Mack's license plate number?
Wednesday, October 7, 2009
Is it possible to notice the signs early when so much is going on?
I plan to try and go to Living Well on Thursday...they seem to have a Welcome session planned...then they can tell me all the good stuff. I also want to check out the American Cancer Society in Batavia....nurse at the treatment part of LaGrange office faxed them info about me and I'm to expect a call. She says they have a looking your best program where they give away makeup and cosmetics, wigs and scarves...freebies. Can't beat that.
My poison is called R-CHOP. Rituximab (the big bag), Cyclophosphamide (small bag), Vincristine sulfate (nurse does quick injection), and Doxorubicin (also a quickie injection). That's during a session. Then there's all the pills I take at home at different times of the day....trying to get used to the schedule now.
History: I think my problems actually started a year ago, that's when my hip pain started (where the bulk of the swollen, cancerous lymph nodes are now). I told my doc at my annual check up in November 2008, and she ordered a bone density test....she assumed thinning bones, some osteoporosis, I was premenopausal...factors other than cancer.
But I truly believe that was the start. Then I had the gallbladder problem and my period stopped in May...but things just weren't getting better (back pain, cramping, stomach seeming to take it's time adjusting to the bile dump without the gallbladder). I attributed all the woes to these other problems of adjustment and change of life. It was a change alright and the delay gave the disease a chance to spread north.
In June I started getting stunning pain in my right shoulder area when I moved it in certain directions.....I thought it was from handling books (swiping them in repeat action over the bar code reader at the library....like a carpal tunnel of the shoulder)....not realizing the lymph nodes were affected there.
It's been a rough year to say the least.
My poison is called R-CHOP. Rituximab (the big bag), Cyclophosphamide (small bag), Vincristine sulfate (nurse does quick injection), and Doxorubicin (also a quickie injection). That's during a session. Then there's all the pills I take at home at different times of the day....trying to get used to the schedule now.
History: I think my problems actually started a year ago, that's when my hip pain started (where the bulk of the swollen, cancerous lymph nodes are now). I told my doc at my annual check up in November 2008, and she ordered a bone density test....she assumed thinning bones, some osteoporosis, I was premenopausal...factors other than cancer.
But I truly believe that was the start. Then I had the gallbladder problem and my period stopped in May...but things just weren't getting better (back pain, cramping, stomach seeming to take it's time adjusting to the bile dump without the gallbladder). I attributed all the woes to these other problems of adjustment and change of life. It was a change alright and the delay gave the disease a chance to spread north.
In June I started getting stunning pain in my right shoulder area when I moved it in certain directions.....I thought it was from handling books (swiping them in repeat action over the bar code reader at the library....like a carpal tunnel of the shoulder)....not realizing the lymph nodes were affected there.
It's been a rough year to say the least.
Chemo session 1, what am I in for?
Good luck Rolfe. We can't diminish the pain you are going through. It's the next best thing to childbirth, except you don't have to put the delivery through college. Now find out what causes your stones and never eat that food ever again.
Update: Therapy number 1 (of 8) went pretty well. The whole session took almost 7 hours, like a long plane ride while sitting on the tarmac. There was one very long moment that I had uncontrollable shivers and shakes I couldn't even hold a pen. But nursing staff was great and stopped the med for a bit, injected something to calm me, let me rest a while and started the drip again at a lower dose. Later she inched it back up and I tolerated it just fine. It's poison I tell ya.
I feel good tonight (they also slip in steroids for energy and anti-nausea fluids). It's the next few days where I'll get the queasies and then the fatigue and with hair on my pillow.
There was an older woman getting treatment when I came in this morning. She actually looked elegant in her coffee colored kerchief. She smiled at me, and then I spent the next hour or so scrutinizing her smile . . . .what was she saying? "HA, a newbie . . . .she won't have those pretty curls for long." Or was it a friendly, join the club? I may never know.
I did see the doc briefly. And now I know it's stage 3 lymphoma, meaning it's above and below the diaphragm. An infected lymph node (or more? Not sure yet) was found with the PET scan in the right upper back/shoulder (no wonder I couldn't swing a golf club due to the stunning pain). I see the doc with Paul in about two weeks for more explanation of diagnosis.
So one down seven to go. And it's not a white light at the end of a tunnel I'm looking for, because I know, if you see the white light, you don't want to go there.
Update: Therapy number 1 (of 8) went pretty well. The whole session took almost 7 hours, like a long plane ride while sitting on the tarmac. There was one very long moment that I had uncontrollable shivers and shakes I couldn't even hold a pen. But nursing staff was great and stopped the med for a bit, injected something to calm me, let me rest a while and started the drip again at a lower dose. Later she inched it back up and I tolerated it just fine. It's poison I tell ya.
I feel good tonight (they also slip in steroids for energy and anti-nausea fluids). It's the next few days where I'll get the queasies and then the fatigue and with hair on my pillow.
There was an older woman getting treatment when I came in this morning. She actually looked elegant in her coffee colored kerchief. She smiled at me, and then I spent the next hour or so scrutinizing her smile . . . .what was she saying? "HA, a newbie . . . .she won't have those pretty curls for long." Or was it a friendly, join the club? I may never know.
I did see the doc briefly. And now I know it's stage 3 lymphoma, meaning it's above and below the diaphragm. An infected lymph node (or more? Not sure yet) was found with the PET scan in the right upper back/shoulder (no wonder I couldn't swing a golf club due to the stunning pain). I see the doc with Paul in about two weeks for more explanation of diagnosis.
So one down seven to go. And it's not a white light at the end of a tunnel I'm looking for, because I know, if you see the white light, you don't want to go there.
The Big C
And now the latest “big C” update for anyone who missed my news. I finally have a better (tho still incomplete) diagnosis. Today’s PET-scan will provide stage and spread of the disease. The gobbledygook title is Non-Hodgkin’s Diffuse Large B-Cell Lymphoma.
It is in my back where the lymph nodes are enlarged (no wonder I have an achy breaky back.) It is pushing my organs forward on top of having what is considered a big fibroid between my uterus and ovary (PET will say if that’s cancer or not). That’s why I look pregnant.
So today is the PET, Thursday I go to “cancer college” to learn what to expect, Friday I get a port surgically inserted in my chest (makes for easier chemo drug insertion without getting fresh IV’s every visit), and Tuesday is first of 6 to 8 treatments of Chemo.
With 3 weeks between treatments, I should be done early Feb. or mid to late March. And thanks to Elaine mentioning this . . . I go to the dentist on Saturday for my pushed up 6 month cleaning (can’t do that while under treatment . . . thanks for the pointer, Elaine . . . they don’t tell you everything!). So it’s a busy next several days.
I probably won’t make WA next week. And I submitted the leave of absence request to the library . . . I’ll have to see how I feel later on, and see if they’ll let me work the back room (checking books in) in the very near future. Basil called this morning telling me he had and beat the same cancer. He suggested I wear a mask at work . . . I suppose it’s a possibility (mask and wig . . . .hmmm, I might start a new fashion fad in North Aurora).
One big OY. But maybe for my next birthday (next March) I’ll have the best gift to receive . . . .remission.
It is in my back where the lymph nodes are enlarged (no wonder I have an achy breaky back.) It is pushing my organs forward on top of having what is considered a big fibroid between my uterus and ovary (PET will say if that’s cancer or not). That’s why I look pregnant.
So today is the PET, Thursday I go to “cancer college” to learn what to expect, Friday I get a port surgically inserted in my chest (makes for easier chemo drug insertion without getting fresh IV’s every visit), and Tuesday is first of 6 to 8 treatments of Chemo.
With 3 weeks between treatments, I should be done early Feb. or mid to late March. And thanks to Elaine mentioning this . . . I go to the dentist on Saturday for my pushed up 6 month cleaning (can’t do that while under treatment . . . thanks for the pointer, Elaine . . . they don’t tell you everything!). So it’s a busy next several days.
I probably won’t make WA next week. And I submitted the leave of absence request to the library . . . I’ll have to see how I feel later on, and see if they’ll let me work the back room (checking books in) in the very near future. Basil called this morning telling me he had and beat the same cancer. He suggested I wear a mask at work . . . I suppose it’s a possibility (mask and wig . . . .hmmm, I might start a new fashion fad in North Aurora).
One big OY. But maybe for my next birthday (next March) I’ll have the best gift to receive . . . .remission.
Start spreading the news
I’m writing one email to send blind-copy to friends who may not know yet. I’ve told family of course and friends that I see on a regular basis . . . .but now I figure I should tell folks I don’t see as often because I figure you’d want to know too.
How’s that for a dramatic opening? Well the news isn’t great. I start chemo therapy this Tuesday as I was recently diagnosed with Non-Hodgkin’s Diffuse Large B cell lymphoma (there are so many forms of cancer, I guess someone had to come up with a fancy name).
Physically things haven’t been right since Spring (I’ll skip the details). And seemed to be getting worse when I went to the doctor about two weeks ago. She ordered a CAT scan and then ordered me to hospital immediately. A blood clot was detected. The scan showed other abnormalities (fibroids? tumors?).
And a slew of more tests were run, more CATs, two MRIs, X-rays, blood tests, MUGA (to test the strength of the heart), a tissue biopsy and a bone marrow biopsy, and last test was a PET scan, I think that’s been it . . . that’s been enough! Oh wait, I had a port surgically put in my chest on Friday (that’s to make IVs and injections easier to take without getting needle stuck all of the time).
I still don’t know the stage, but the good news: the blood clots are not clots (so no more blood thinner for me . . . .it was creepy giving myself belly injections twice a day, so I can somewhat relate to diabetics with that dreadful chore).
The lymph nodes in my back and left side are enlarged and there’s a mass growing between my uterus and right ovary. I look pregnant. Those phony blood clots are actually part of the alien growths.
Chemo at this point will be a cocktail of 4 drugs (R-CHOP) put in through the port. I’m to have 8 sessions, each lasting 6 hours, done once a week with 3 weeks in between. And hopefully the ordeal will be complete by mid-late March.
Yes I’ll lose my curls, suffer nausea and fatigue . . . all the fun stuff. No one in my family ever had cancer, so I finally get to be the first at something. And as weird and scary as all this seems, I am looking forward to the chemo shrinking those tumors and reducing the pain . . . .bring it on and lets get this over with.
So there you have it. One request: no phone calls please. Email if you wish, but calls, as much as I appreciate the concern and well wishes, and I like talking to friends, it’s overwhelming. When I came home after the first hospital stay I seemed to get non-stop calls for the next two days . . . .it was exhausting.
I’m sorry to deliver bad news (unless you really don’t like me). I don’t like upsetting my friends. But if the tables were turned, I’d want to know.
Paul and my daughters are giving me wonderful support . . . .all I had to do was ask. And emotionally I’m good too, seeing this as one friend going through breast cancer has said to me over and over . . . these are just moments and moments pass.
Staying strong and optimistic.
How’s that for a dramatic opening? Well the news isn’t great. I start chemo therapy this Tuesday as I was recently diagnosed with Non-Hodgkin’s Diffuse Large B cell lymphoma (there are so many forms of cancer, I guess someone had to come up with a fancy name).
Physically things haven’t been right since Spring (I’ll skip the details). And seemed to be getting worse when I went to the doctor about two weeks ago. She ordered a CAT scan and then ordered me to hospital immediately. A blood clot was detected. The scan showed other abnormalities (fibroids? tumors?).
And a slew of more tests were run, more CATs, two MRIs, X-rays, blood tests, MUGA (to test the strength of the heart), a tissue biopsy and a bone marrow biopsy, and last test was a PET scan, I think that’s been it . . . that’s been enough! Oh wait, I had a port surgically put in my chest on Friday (that’s to make IVs and injections easier to take without getting needle stuck all of the time).
I still don’t know the stage, but the good news: the blood clots are not clots (so no more blood thinner for me . . . .it was creepy giving myself belly injections twice a day, so I can somewhat relate to diabetics with that dreadful chore).
The lymph nodes in my back and left side are enlarged and there’s a mass growing between my uterus and right ovary. I look pregnant. Those phony blood clots are actually part of the alien growths.
Chemo at this point will be a cocktail of 4 drugs (R-CHOP) put in through the port. I’m to have 8 sessions, each lasting 6 hours, done once a week with 3 weeks in between. And hopefully the ordeal will be complete by mid-late March.
Yes I’ll lose my curls, suffer nausea and fatigue . . . all the fun stuff. No one in my family ever had cancer, so I finally get to be the first at something. And as weird and scary as all this seems, I am looking forward to the chemo shrinking those tumors and reducing the pain . . . .bring it on and lets get this over with.
So there you have it. One request: no phone calls please. Email if you wish, but calls, as much as I appreciate the concern and well wishes, and I like talking to friends, it’s overwhelming. When I came home after the first hospital stay I seemed to get non-stop calls for the next two days . . . .it was exhausting.
I’m sorry to deliver bad news (unless you really don’t like me). I don’t like upsetting my friends. But if the tables were turned, I’d want to know.
Paul and my daughters are giving me wonderful support . . . .all I had to do was ask. And emotionally I’m good too, seeing this as one friend going through breast cancer has said to me over and over . . . these are just moments and moments pass.
Staying strong and optimistic.
The good life for naught
Quick note as I don’t have much time right now . . . Saw doc this week, she ordered tests, took those today, Cat-scan showed some bad things . . . .a clot in the vena cava, super low iron count, and a mass (tumor) in the opening of the uterus (may involve the singe ovary I have). Something goofy in my lungs, and other stuff I don’t remember . . . .it was rat-a-tat-tat delivery of problems and a shocker.
Doc wants me in the hospital today. She’s writing up orders of admittance. She said I was a ticking time bomb with the clot that’s why the sudden hospital admittance.
Obviously I will be out of communicato for a bit (but there’s Paul who will no doubt be calling the world).. . . .not sure what’s gonna happen beyond clot removal right away. I meet with a Gynie tomorrow at the hospital to determine the next steps with the tumor.
I got home after hearing this knowing I must call both work places and my husband and kids (and the sibs), and pack for the hospital, etc . . . .but first took time out for dark chocolate (what better comfort?).
I should have smoked, skipped all the wasted time exercising, and ate all the junk food, slept around . . . .and enjoyed life instead of trying to be so healthy and good . . . .kidding. Actually I am optimistic that the new road map about to be carved on my abdomen will (how’s this?) lead the way home (too corny L).
I still think I’m paying for all the smashed chewing gum I scrapped up and ate off the sidewalks in childhood . . .or was it Mom’s fingernail in the pudding? Maybe that Band-Aide she let slip into the dough of that one chocolate chip cookie she baked and I ate?
Doc wants me in the hospital today. She’s writing up orders of admittance. She said I was a ticking time bomb with the clot that’s why the sudden hospital admittance.
Obviously I will be out of communicato for a bit (but there’s Paul who will no doubt be calling the world).. . . .not sure what’s gonna happen beyond clot removal right away. I meet with a Gynie tomorrow at the hospital to determine the next steps with the tumor.
I got home after hearing this knowing I must call both work places and my husband and kids (and the sibs), and pack for the hospital, etc . . . .but first took time out for dark chocolate (what better comfort?).
I should have smoked, skipped all the wasted time exercising, and ate all the junk food, slept around . . . .and enjoyed life instead of trying to be so healthy and good . . . .kidding. Actually I am optimistic that the new road map about to be carved on my abdomen will (how’s this?) lead the way home (too corny L).
I still think I’m paying for all the smashed chewing gum I scrapped up and ate off the sidewalks in childhood . . .or was it Mom’s fingernail in the pudding? Maybe that Band-Aide she let slip into the dough of that one chocolate chip cookie she baked and I ate?
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