Jane had the pump removed for the final time (hopefully). Treatments are over!!! This treatment hit her hard and she is pretty low energy and nauseous. Still stealing off for anniversary celebration in Quebec.
Jane will update soon.
Thank you all for caring, loving, and keeping Jane in your thoughts.
Friday, August 25, 2017
Thursday, August 24, 2017
Hooked up to LAST infusion!
Early AM steroid-induced blogging again - but hopefully this is the last of such nights! Although my platelets have dropped further and I had to have some bleeding on my stoma checked, my oncologist allowed me to proceed with the last chemo infusions yesterday. When the surgeon who checked my stoma casually said "let's just postpone chemo for a while", I involuntarily screamed "NO"! Between my reaction, the ostomy nurse's opinion that the stoma was healing, and my oncologist's more laissez faire attitude, I was allowed to proceed. The chemo effects are pretty nasty this time. Lots of nausea, muscular cramping, tiredness...BUT I am so pleased that I'm going to have this pump removed (hopefully for the last time) this Friday!
Cancer certainly runs you through the full gamut of human emotions. For the first 4 months after diagnosis I experienced acute anger, denial, confusion, self-pity and anguish. But as treatments started I came to realize that denial, self-pity and anguish were self-destructive, and I really needed to rally all my emotional resources for the task at hand. I gradually came to resignation, and then finally acceptance.
Recently, I reflected to Steve (who suffered through many bouts of my crying and "why me-ing" in the first 4 months) that it had been months since I had cried. Well, yesterday after the nurses installed the home-chemo pump for the last time and toasted with tiny cups of ginger-ale, the floodgates opened again. As I walked out the door at Lahey, I realized that the tears really hurt, both as they passed through my inner tear ducts and as they wet my face. When I realized that the chemo in my body was likely coming out in my burning tears, I stifled the emotion and washed my face. I will need to save the indulgence of tears for a future date. I am sure many opportunities will arrive in upcoming months as I adjust, recover from, and reflect upon this year.
Recently, I reflected to Steve (who suffered through many bouts of my crying and "why me-ing" in the first 4 months) that it had been months since I had cried. Well, yesterday after the nurses installed the home-chemo pump for the last time and toasted with tiny cups of ginger-ale, the floodgates opened again. As I walked out the door at Lahey, I realized that the tears really hurt, both as they passed through my inner tear ducts and as they wet my face. When I realized that the chemo in my body was likely coming out in my burning tears, I stifled the emotion and washed my face. I will need to save the indulgence of tears for a future date. I am sure many opportunities will arrive in upcoming months as I adjust, recover from, and reflect upon this year.
Have a wonderful week everyone! Looks like we're in for a stretch of lovely weather and a delightful late-summer weekend. 🌟Please enjoy every moment, dear friends and family!!
Tuesday, August 22, 2017
Slight complication?
I am up at 2 AM the night before my (hopefully) last chemo treatment, worrying. Yesterday I discovered a bleeding/scabbing issue with my stoma. The doctors think it might be related to chemo, perhaps low platelets. I was asked to come in early Wednes to be checked, stoma as well as blood. SO....back to possible delay in finishing treatment, we'll see. UGH - just want to be DONE so I can start healing.
I'll post when I have more info. Thanks for hanging in there with me!
I'll post when I have more info. Thanks for hanging in there with me!
Thursday, August 17, 2017
Platelets rebound!
Just heard from my oncologist. Blood test
results they took yesterday were actually a bit higher, so I am back on schedule to finish
up my last infusions August 23-25. Never thought I’d be happy to hear I have an
infusion - but YAY! Must have been those healthy blueberries that I ate this weekend in Vermont. And all the good juju y'all sent me, of course!
Wednesday, August 9, 2017
Platelets
My Fitbit is angry and is letting me know. It does not like infusion days as they lead to unhealthy long periods of sitting. My stomach and extremities are angry too, as infusion days lead to nausea, cold intolerance, cramping and pain. But I am not angry - this is infusion #7 - the second to last! What a long strange trip it has been.
One glitch this week. My platelets are in the danger zone. I will need to go in next week to have another blood draw, and they may postpone treatment #8 if they continue to drop. Platelets allow the blood to clot, so they worry about uncontrolled bleeding should platelets drop too low. I reminded Steve to drive carefully on the way home from the hospital today - no bloody car accidents please- he listened!
I have been asked to be a volunteer to talk with others who have my cancer, and have my 3rd volunteer call tonight. The most interest seems to be from people whose cancer has advanced to the point where they have been recommended APR surgery. Talking with people about APR surgery is difficult for me as I still feel ambivalent myself. It is still a bit early for me to be a good counselor I think, my feelings have not settled. Living with a colostomy is a big, disruptive life change, no question about it. It is forever - even after the more immediate pains and concerns with treatments have subsided, the colostomy remains.
On the other hand, I know of people who have refused the dreaded APR surgery who have died when the cancer spread. I know my APR probably saved my life. So, although the feelings are mixed, I try to be both positive and honest with my counselees. In time, I think I will get this all clearer in my head.
I'll post later once I get blood test results next week. Hoping I can proceed forward and finish up all the treatments by the end of August. I am already planning a kickass fall!
Love y'all!! 💕💕💕💕💕
One glitch this week. My platelets are in the danger zone. I will need to go in next week to have another blood draw, and they may postpone treatment #8 if they continue to drop. Platelets allow the blood to clot, so they worry about uncontrolled bleeding should platelets drop too low. I reminded Steve to drive carefully on the way home from the hospital today - no bloody car accidents please- he listened!
I have been asked to be a volunteer to talk with others who have my cancer, and have my 3rd volunteer call tonight. The most interest seems to be from people whose cancer has advanced to the point where they have been recommended APR surgery. Talking with people about APR surgery is difficult for me as I still feel ambivalent myself. It is still a bit early for me to be a good counselor I think, my feelings have not settled. Living with a colostomy is a big, disruptive life change, no question about it. It is forever - even after the more immediate pains and concerns with treatments have subsided, the colostomy remains.
On the other hand, I know of people who have refused the dreaded APR surgery who have died when the cancer spread. I know my APR probably saved my life. So, although the feelings are mixed, I try to be both positive and honest with my counselees. In time, I think I will get this all clearer in my head.
I'll post later once I get blood test results next week. Hoping I can proceed forward and finish up all the treatments by the end of August. I am already planning a kickass fall!
Love y'all!! 💕💕💕💕💕
Thursday, July 27, 2017
Chemo Cocktail #6
Chemo cocktail #6 hit me like a ton of bricks, and I pretty much had to go straight to bed when I got back from the hospital yesterday. I am told the later chemo sessions are the worst. The weird (but now familiar) side effects are back: extreme sensitivity to cold, cramping in legs, feet and hands, soreness in mouth and jaw, burning when I pee out the caustic cocktail (courtesy of prior pelvic radiation), and lack of appetite (only weird because I usually have a great Italian appetite)! Now I am up early from the dose of steroid they give me with the oxaliplatin. No way am I falling back asleep with this stuff coursing through my veins. I guess this is becoming my regular blogging hour.
My blood tests yesterday show dropping RBCs and low hematocrit, which I think is causing the tiredness. But my WBCs are staying high enough that I don't have to worry too much about germs, or needing an infusion. I saw my radiation oncologist this week and she said that I probably have "good bone marrow", meaning my blood is better able to respond to the onslaught of chemo. My hair continues to fall out, but I still have more than 50% of it. Glad I chopped it - the thinning would be much more noticeable had I left it long.
The last 2 weeks have been busy with work and fitting in as many summertime activities as I have energy for. Finally got my big EPA grant and budget pulled together and we plan to upload it next Monday. Huge sigh of relief once that is done! I do enjoy getting out and usually feel better afterwards. Living a life as close to my normal one makes me feel more optimistic and more like the "real" me. This seems important to my physical and mental health right now.
Thanks to friends who have accompanied me at the hospital and on walks, meals, and movies! Thanks to those of you still checking in during this long, drawn out ordeal! It seems like forever since I started chemo and radiation the end of 2016. But I am seeing a light at the end of this tunnel and am feeling pretty optimistic right now.
Love you all ❤️
My blood tests yesterday show dropping RBCs and low hematocrit, which I think is causing the tiredness. But my WBCs are staying high enough that I don't have to worry too much about germs, or needing an infusion. I saw my radiation oncologist this week and she said that I probably have "good bone marrow", meaning my blood is better able to respond to the onslaught of chemo. My hair continues to fall out, but I still have more than 50% of it. Glad I chopped it - the thinning would be much more noticeable had I left it long.
The last 2 weeks have been busy with work and fitting in as many summertime activities as I have energy for. Finally got my big EPA grant and budget pulled together and we plan to upload it next Monday. Huge sigh of relief once that is done! I do enjoy getting out and usually feel better afterwards. Living a life as close to my normal one makes me feel more optimistic and more like the "real" me. This seems important to my physical and mental health right now.
Thanks to friends who have accompanied me at the hospital and on walks, meals, and movies! Thanks to those of you still checking in during this long, drawn out ordeal! It seems like forever since I started chemo and radiation the end of 2016. But I am seeing a light at the end of this tunnel and am feeling pretty optimistic right now.
Love you all ❤️
Thursday, July 13, 2017
Enjoying the little things in life
Good morning! Another early AM blog thanks to steroids. Yesterday they hooked me up to infusion #5, and I talked my oncologist into reducing my dexamethasone (steroid) to 4 mg. I think the lower dose helped me sleep a wee bit more - but here I am, up for the early am "blogging hour"...
I feel that the the effects of this chemo are getting a bit more intense and lasting a bit longer each time. I have been petty tired at work, and am so thankful I have these three infusion days off.
That said, once the chemo leaves my system I feel much better and have been enjoying life as much as possible. We spent last weekend on AMC's Three Mile Island (Winnepesaukee) where Rory works. I am noticing that I am doing way less here than I did when we visited prior summers. Usually I kayak, hike, paddle-board, and swim a ton. This year it seems it is all I can do to undertake a few-mile kayak and some hiking around the island (mostly to the main lodge for meals). The chemo has steadily dropped my RBCs and hemoglobin and I am starting to feel fatigued more easily. I had to opt out of the 11 pm full-moon paddle that Rory offered us, I was 3/4 asleep! Steve went and said it was lovely. I am trying to not be hard on myself or disappointed about my reduced activity.
Perhaps this is a good life lesson - adjusting to my new normal and being as satisfied as possible with things as they are. I tried to focus on enjoying the smaller, simpler things that one can do on the island. For instance, I had a few totally lovely walks through the sun-dappled paths on the way to and fro our little cabin, I had a warm and delicious solar shower from lake water that had warmed in the sun on our deck all day, and a meditative cup of tea with Steve while looking out on the lake from the front porch of the main lodge, breeze blowing in from the White Mountains. I find it helpful to remind myself to not get caught up in my own expectations - to be receptive and thankful for the small moments of joy and beauty that are happening all around me - especially on a lovely summer day. Some of these lessons that cancer is teaching me will hopefully get generalized when my normal life returns. Life lessons indeed!
I feel that the the effects of this chemo are getting a bit more intense and lasting a bit longer each time. I have been petty tired at work, and am so thankful I have these three infusion days off.
That said, once the chemo leaves my system I feel much better and have been enjoying life as much as possible. We spent last weekend on AMC's Three Mile Island (Winnepesaukee) where Rory works. I am noticing that I am doing way less here than I did when we visited prior summers. Usually I kayak, hike, paddle-board, and swim a ton. This year it seems it is all I can do to undertake a few-mile kayak and some hiking around the island (mostly to the main lodge for meals). The chemo has steadily dropped my RBCs and hemoglobin and I am starting to feel fatigued more easily. I had to opt out of the 11 pm full-moon paddle that Rory offered us, I was 3/4 asleep! Steve went and said it was lovely. I am trying to not be hard on myself or disappointed about my reduced activity.
Perhaps this is a good life lesson - adjusting to my new normal and being as satisfied as possible with things as they are. I tried to focus on enjoying the smaller, simpler things that one can do on the island. For instance, I had a few totally lovely walks through the sun-dappled paths on the way to and fro our little cabin, I had a warm and delicious solar shower from lake water that had warmed in the sun on our deck all day, and a meditative cup of tea with Steve while looking out on the lake from the front porch of the main lodge, breeze blowing in from the White Mountains. I find it helpful to remind myself to not get caught up in my own expectations - to be receptive and thankful for the small moments of joy and beauty that are happening all around me - especially on a lovely summer day. Some of these lessons that cancer is teaching me will hopefully get generalized when my normal life returns. Life lessons indeed!
Thank you everyone for keeping up the support. I am so lucky to have you all at my side ❤️
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