From Jan:
I'm not sure how to even start the blog post or what to say. There isn't a way to write it with a positive spin. It's just bad news.
So the CT scan showed that some of the tumors have shrunk, but others have grown. This means that the chemo isn't working. Furthermore, there are masses that are an advanced type called Metastatic disease that puts me in a more advanced stage of cancer.
When you get news like this, you are in shock and can't think of the questions you should ask. The oncologist was visibly upset about having to deliver such bad news. She said we are no longer hoping for a cure. Our only recourse is to put me on a more aggressive chemo that will make me very sick and to schedule me for a bone marrow transplant. She wanted me to go home and give it some thought because either way it's a death sentence.
My mother died after her bone marrow transplant and it was a horrible process that you wouldn't wish on your worst enemy. But my doctor said I had a 90% chance of surviving it. However there wouldn't be a chance that it would cure me. Just a 50% chance that it would put me in a temporary partial remission. Most people only go through a bone marrow transplant in hopes for a cure, so I am asking myself if it really is worth going through something so drastic with the only hope of a partial remission that won't last, and a 50% chance it won't work.
Right now we are waiting for the transplant team at LDS hospital to meet and discuss which chemo they want to switch me to. One kind would require me to be admitted to the hospital. The other would have me going for outpatient chemo 5 days every other week. Both will make me very sick. But the doctor has hopes that it would shrink the new stronger tumors.
I can't make a decision about not having the bone marrow transplant without more info, so I'll have to meet with their team. Just thinking about it upsets me. I also want to know how long I have if I don't opt to do the bone marrow transplant and what I could expect as far as pain, etc with that decision.
My son Chase is staying with me now until Thursday when my daughter Jessa will come. So I'm not alone. The new tumors are already causing me pain, so I need to figure out what course of action I'm going to take. Right now I'm leaning towards just chemo and no transplant. We'll see what I decide later after I meet with the bone marrow transplant team.
Your prayers would be appreciated. Thank you.
Tuesday, June 28, 2016
Monday, June 20, 2016
6/20/16
From Jan:
So Chemo round three is over and I didn't get sick. Not only did I not get sick, I didn't have the extreme fatigue days at all. I had a day or two when I took a couple short naps, but that was the worst of it.
The worst part of my symptoms is shaking. I hate it. My hands shake so much that typing is next to impossible, and my handwriting is illegible. Putting on mascara is difficult, so I only venture to put it on my top lashes. Eyeliner is difficult too. I look forward to the day that my hands and fingers will no longer shake and bounce all over the place. We think that it is a side effect from the nausea drugs - but it is just a guess. I haven't talked to anyone else who has the same symptoms.
So- Chemo Round Four starts Monday. My son, Chase is thinking about coming up for my first days of chemo. I hope he can make it, because I need rides to chemo and he could take me every day. My daughter Jessa and granddaughter Emery will be coming that Friday through the 4th of July, so that is something to look forward to.
Thank you to everyone who brought me meals. I can't thank you enough. I'm in better shape now to prepare or go get my own dinners now, but that was wonderful to receive meals each night.
So Chemo round three is over and I didn't get sick. Not only did I not get sick, I didn't have the extreme fatigue days at all. I had a day or two when I took a couple short naps, but that was the worst of it.
The worst part of my symptoms is shaking. I hate it. My hands shake so much that typing is next to impossible, and my handwriting is illegible. Putting on mascara is difficult, so I only venture to put it on my top lashes. Eyeliner is difficult too. I look forward to the day that my hands and fingers will no longer shake and bounce all over the place. We think that it is a side effect from the nausea drugs - but it is just a guess. I haven't talked to anyone else who has the same symptoms.
So- Chemo Round Four starts Monday. My son, Chase is thinking about coming up for my first days of chemo. I hope he can make it, because I need rides to chemo and he could take me every day. My daughter Jessa and granddaughter Emery will be coming that Friday through the 4th of July, so that is something to look forward to.
Thank you to everyone who brought me meals. I can't thank you enough. I'm in better shape now to prepare or go get my own dinners now, but that was wonderful to receive meals each night.
Wednesday, June 8, 2016
6/8/16
From Jan:
Today I'll get day 3 of my pink chemo. I feel good, if I didn't have this pump hanging around my neck like a messenger bag I would definitely be back at work. However the tubing that goes from the bag, to up under my shirt up to my port tends to get snagged on drawer pulls and I worry about that so I'm home bound and bored. Really, really bored. The big excitement of my day is going to Utah Cancer Specialists to get the bag of chemo switched out each day.
Right now the best thing about chemo week is they give me a different anti nausea drug called Aloxi through my port that doesn't make my hands tremble like the Zofran I take by mouth during the other two weeks. My hands are totally steady and close to normal and that's a pretty big deal for me. So this week is turning out to being the best week as far as feeling like my pre-cancer self. I'm missing being at work and my normal routine.
This week through this coming Monday I should feel good and would love company when I'm not at chemo. So today, Thursday, Friday, Saturday, and Sunday and Monday please call or text to find a time to come see me and break up my monotonous long days of watching tv. Starting Tuesday I'm afraid I'll start feeling awful again if the last two sessions are an indication of what is normal. Thank you to the friends and family who have come to visit. And thanks to the wonderful people who drive me to chemo and who are bringing me dinner and those who have dropped off Gatorade or Propel. Those drinks really help me through the nausea to keep electrolytes in my system.
I will be having a CAT scan on the 23rd to see if the tumors are continuing to shrink. This will determine if I have six or eight sessions of chemo, so prayers would be very much appreciated. Thank you for all the prayers and good thoughts directed my way. Love you all - Jan.
Today I'll get day 3 of my pink chemo. I feel good, if I didn't have this pump hanging around my neck like a messenger bag I would definitely be back at work. However the tubing that goes from the bag, to up under my shirt up to my port tends to get snagged on drawer pulls and I worry about that so I'm home bound and bored. Really, really bored. The big excitement of my day is going to Utah Cancer Specialists to get the bag of chemo switched out each day.
Right now the best thing about chemo week is they give me a different anti nausea drug called Aloxi through my port that doesn't make my hands tremble like the Zofran I take by mouth during the other two weeks. My hands are totally steady and close to normal and that's a pretty big deal for me. So this week is turning out to being the best week as far as feeling like my pre-cancer self. I'm missing being at work and my normal routine.
This week through this coming Monday I should feel good and would love company when I'm not at chemo. So today, Thursday, Friday, Saturday, and Sunday and Monday please call or text to find a time to come see me and break up my monotonous long days of watching tv. Starting Tuesday I'm afraid I'll start feeling awful again if the last two sessions are an indication of what is normal. Thank you to the friends and family who have come to visit. And thanks to the wonderful people who drive me to chemo and who are bringing me dinner and those who have dropped off Gatorade or Propel. Those drinks really help me through the nausea to keep electrolytes in my system.
I will be having a CAT scan on the 23rd to see if the tumors are continuing to shrink. This will determine if I have six or eight sessions of chemo, so prayers would be very much appreciated. Thank you for all the prayers and good thoughts directed my way. Love you all - Jan.
Friday, June 3, 2016
6/3/16
From Jan:
Okay. I'm gearing up for my third session of chemo which begins on Monday. In all honesty I'm not mentally ready to start this 3- week roller coaster again. Today I have to have chemo in my spinal column, so I'm getting that out of the way, but I had bad dreams all night about it. Not looking forward to it.
Being in my situation as a widow living alone I've needed a lot of outside help and am so grateful for the friends, family and coworkers who have been willing to help. My oncologist isn't thrilled that I'm by myself so much, but I think it's working better now that I've had less problems this round.
I will need extra help this coming week. My oncologist is going to let me do outpatient chemo instead of being admitted to the hospital. I'll need rides to and from chemo every day next week. I'd drive myself, but that doesn't sound particularly smart. Please call me if you can help me! 801-834-4448.
People keep asking if I'm on chemo every day. No, here's how it works:
Week One- one day (4 hours of drip) of Retuxin as an outpatient at Utah Cancer Specialists (UCS), one 2-hour lumbar puncture chemo in my spinal column, and 5 days continuous chemo drip in the hospital. (Except we are doing the hospital portion as outpatient this time- see above). I usually feel good all week, and am bored with being attached to an IV that allows me no freedom.
Week Two- Sick Week. No more chemo, this week consists of days 8-14 at home. The first day I feel pretty good, but it goes downhill after that. I'm weak, can't keep awake and feel miserable. This is when caring people text to ask how I'm doing and I can't focus well enough to read their texts, much less answer. I sleep most of the time during this week. I love all the well wishes, but am not up for visits or calls or texts. I have alarms that wake me every 4 hours to take pills, and force myself to eat and drink. I'm supposed to eat small meals of protein during these breaks and drink Gatoraid or Propel for the electrolytes, or I'll land myself back in the hospital. I have to ask people to be "on-call" for me each day this week to call me on my four hour breaks to make sure I'm ok. If you are willing to help me for one of these days, please call me.
Week Three- I feel better each day. Usually the second day I'm ready to do normal activities and want to go to work. I wear out quickly and if I don't get a nap I end up going to bed at 7:30pm and sleep 10 hours. I can run errands but get light headed after a half hour trip shopping and have to go home and lay down to recuperate.
Then it starts all over again the next week.
Thank you to my KW family for bringing dinner almost every night, and to Devi Day for organizing it. It's been great, and I love seeing those of you who have come.
It's hard to ask for so much help, but I'm being told it's good for me to learn to accept loving charity. So thank you.
Times: Monday I need to arrive at UCS (3900 S 700 E) at 8:10 and be picked up at 5pm
Tuesday arrive 8:10 am, pick up at 3:30pm
Wednesday same as above
Thursday same as above
Friday arrive 9 am, pick up 3:30
Okay. I'm gearing up for my third session of chemo which begins on Monday. In all honesty I'm not mentally ready to start this 3- week roller coaster again. Today I have to have chemo in my spinal column, so I'm getting that out of the way, but I had bad dreams all night about it. Not looking forward to it.
Being in my situation as a widow living alone I've needed a lot of outside help and am so grateful for the friends, family and coworkers who have been willing to help. My oncologist isn't thrilled that I'm by myself so much, but I think it's working better now that I've had less problems this round.
I will need extra help this coming week. My oncologist is going to let me do outpatient chemo instead of being admitted to the hospital. I'll need rides to and from chemo every day next week. I'd drive myself, but that doesn't sound particularly smart. Please call me if you can help me! 801-834-4448.
People keep asking if I'm on chemo every day. No, here's how it works:
Week One- one day (4 hours of drip) of Retuxin as an outpatient at Utah Cancer Specialists (UCS), one 2-hour lumbar puncture chemo in my spinal column, and 5 days continuous chemo drip in the hospital. (Except we are doing the hospital portion as outpatient this time- see above). I usually feel good all week, and am bored with being attached to an IV that allows me no freedom.
Week Two- Sick Week. No more chemo, this week consists of days 8-14 at home. The first day I feel pretty good, but it goes downhill after that. I'm weak, can't keep awake and feel miserable. This is when caring people text to ask how I'm doing and I can't focus well enough to read their texts, much less answer. I sleep most of the time during this week. I love all the well wishes, but am not up for visits or calls or texts. I have alarms that wake me every 4 hours to take pills, and force myself to eat and drink. I'm supposed to eat small meals of protein during these breaks and drink Gatoraid or Propel for the electrolytes, or I'll land myself back in the hospital. I have to ask people to be "on-call" for me each day this week to call me on my four hour breaks to make sure I'm ok. If you are willing to help me for one of these days, please call me.
Week Three- I feel better each day. Usually the second day I'm ready to do normal activities and want to go to work. I wear out quickly and if I don't get a nap I end up going to bed at 7:30pm and sleep 10 hours. I can run errands but get light headed after a half hour trip shopping and have to go home and lay down to recuperate.
Then it starts all over again the next week.
Thank you to my KW family for bringing dinner almost every night, and to Devi Day for organizing it. It's been great, and I love seeing those of you who have come.
It's hard to ask for so much help, but I'm being told it's good for me to learn to accept loving charity. So thank you.
Times: Monday I need to arrive at UCS (3900 S 700 E) at 8:10 and be picked up at 5pm
Tuesday arrive 8:10 am, pick up at 3:30pm
Wednesday same as above
Thursday same as above
Friday arrive 9 am, pick up 3:30
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