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
Wednesday, May 25, 2016
5/25/16
From Jan:
Today I'm doing amazing considering I'm in my three predicted low days. I give credit to that to the IV fluids and to knowing what not to do from last months experience.
Yesterday I woke up weak and shaking and feeling "off." I hooked up the home IV drip that is attached to a backpack, and tried to drink lots of water. It was a tough day till around 3pm when all the fluids started kicking in. Drinking Gatoraid helped with electrolytes so I'm drinking that instead of so much water today.
It has been suggested to me that in all our efforts to keep me from getting sick from visitors, I have robbed my friends and loved ones from feeling like they can contact me or do something for me that I need. When this whole situation began, I was getting a lot of calls and texts, but was in lots of pain and distress so I couldn't deal with anything more than family. But this second round of chemo is going better. So new rules.
So...I'm happy to have visitors who haven't had colds or been exposed to something. Bring a sports drink that has electrolytes- I'm out of Gatoraid (hint) and need more, or you can bring a protein drink from the Protein Foundary (tell them to replace the whey protein with plant protein.). Call first, so I can confirm I'm still felling good, but I really look forward to seeing people.
I am eating small meals of protein per dr orders. I could use meals along those lines. We were thinking about ordering Cafe Ganesh Indian food for dinner tonight, and my sweet friend Devi is bringing enchiladas Friday night, but it's nice not to think about what I'm up to fixing for meals. Please remember I'm extremely allergic to milk, so no products that have milk or cream - no cream based soups, sour cream etc.
My sister-in-law is here babysitting me till Friday (also doctors orders that I'm not alone), so she is making sure I eat and that visitors use hand sanitizer. I'm in pj's today but I'd love to have a visitor or two to break up our boredom of television all day, so if you're ok with me dressed casually please call or text.
Love, Jan
Love, Jan
Thursday, May 19, 2016
5/19/16
From Jan:
Well live felt great up until about an hour ago (5 pm). I've been out of bed both days, walked the hall, been the model patient for my nurses, and just felt like a normal person. Yay!
But I started feeling fatigued about an hour ago. When I say fatigued, it's more than tired or sleepy, it's like you're going to fall over where ever you happen to be standing or sitting, and you'll be dead asleep in less than a minute.
But I can't lay down yet because I need to stay awake until one of the many medications they've given me wear off. Luckily it should wear off by 7. I remind myself of a baby kitten who falls asleep in its food bowl - exactly like that.
Yesterday the oncologist and pharmacist took pity on my situation and now my 24 hour chemo drip bags are being run over 23 hours instead. In theory that takes an hour off each day, which meant I'd be released close to 3:30 on Saturday. But I wasn't taking into the account that it takes 30 minutes work on the nurse's part to change the bags. Then on top of that my doctor ordered an additional long term anti nausea med to drip for 30 minutes between chemo bags today, so that meant that I didn't gain any time today. We'll have to see how Friday's bag change goes to get a better idea what time I will get released on Saturday. Plus after the pink chemo bag they'll hang one clear chemo bag Saturday that either takes a half or full hour, I can't remember. Jill (my sister) was. Joking with my nurse last night about how she would bring a prize. (Ruby Snap Cookies) to whatever nurse changed the bags fastest. I think the nurse at discharge gets double points if she immediately unhooks me from the IV instead of making me wait 20 minutes like last time. I become totally unreasonable. When it's discharge time and I'm not my normal sweet understanding self. I want out of here the second the last drop of chemo drips!
Oh and if I understand correctly, instead of sending me home with an IV pole, the IV will be in a pump I wear like a fanny pack! (I have to have an IV drip 10 hours of each 24 hour day at home to keep me from getting as sick as last time.) So a home health nurse will come by with 12 IV bags and will teach me how to change the bags myself.
They're rally invested in having me not get sick and land back in the hospital, so besides the long term nausea drug I got today, and sending me home with the IV pump, they have called in additional drugs to take at home. In all there will be 3 nausea drugs, two of which I'll take alternatively every four hours. As I understand, all 3 of these anti nausea medications work on different channels so you can take all 3 and not worry about over medicating because they all target something different.
So besides their regime, I now know I need to force myself to eat several small meals a day, and drink a lot of water and get up and walk for 15 minutes when I'm fatigued. So with all that I'm expecting a better outcome. And I plan to return to work the week of May 30- June 3rd. It's the week right before I start my 3rd chemo session, do I'm looking forward to seeing how that goes, and it's extra motivation to do everything right this time to prevent setbacks.
Thanks again for all the continued prayers on Jan and the family's behalf!
Well live felt great up until about an hour ago (5 pm). I've been out of bed both days, walked the hall, been the model patient for my nurses, and just felt like a normal person. Yay!
But I started feeling fatigued about an hour ago. When I say fatigued, it's more than tired or sleepy, it's like you're going to fall over where ever you happen to be standing or sitting, and you'll be dead asleep in less than a minute.
But I can't lay down yet because I need to stay awake until one of the many medications they've given me wear off. Luckily it should wear off by 7. I remind myself of a baby kitten who falls asleep in its food bowl - exactly like that.
Yesterday the oncologist and pharmacist took pity on my situation and now my 24 hour chemo drip bags are being run over 23 hours instead. In theory that takes an hour off each day, which meant I'd be released close to 3:30 on Saturday. But I wasn't taking into the account that it takes 30 minutes work on the nurse's part to change the bags. Then on top of that my doctor ordered an additional long term anti nausea med to drip for 30 minutes between chemo bags today, so that meant that I didn't gain any time today. We'll have to see how Friday's bag change goes to get a better idea what time I will get released on Saturday. Plus after the pink chemo bag they'll hang one clear chemo bag Saturday that either takes a half or full hour, I can't remember. Jill (my sister) was. Joking with my nurse last night about how she would bring a prize. (Ruby Snap Cookies) to whatever nurse changed the bags fastest. I think the nurse at discharge gets double points if she immediately unhooks me from the IV instead of making me wait 20 minutes like last time. I become totally unreasonable. When it's discharge time and I'm not my normal sweet understanding self. I want out of here the second the last drop of chemo drips!
Oh and if I understand correctly, instead of sending me home with an IV pole, the IV will be in a pump I wear like a fanny pack! (I have to have an IV drip 10 hours of each 24 hour day at home to keep me from getting as sick as last time.) So a home health nurse will come by with 12 IV bags and will teach me how to change the bags myself.
They're rally invested in having me not get sick and land back in the hospital, so besides the long term nausea drug I got today, and sending me home with the IV pump, they have called in additional drugs to take at home. In all there will be 3 nausea drugs, two of which I'll take alternatively every four hours. As I understand, all 3 of these anti nausea medications work on different channels so you can take all 3 and not worry about over medicating because they all target something different.
So besides their regime, I now know I need to force myself to eat several small meals a day, and drink a lot of water and get up and walk for 15 minutes when I'm fatigued. So with all that I'm expecting a better outcome. And I plan to return to work the week of May 30- June 3rd. It's the week right before I start my 3rd chemo session, do I'm looking forward to seeing how that goes, and it's extra motivation to do everything right this time to prevent setbacks.
Thanks again for all the continued prayers on Jan and the family's behalf!
Wednesday, May 18, 2016
5/18/16
Update from Jan:
Yesterday I did my outpatient Retuxin at Utah Cancer Specialists. The first time I had it, I was on my loopy drugs, so all I did was sleep and have weird dreams. But yesterday I realized the first half hour they run benedryl and another drug first. It made me so sleepy I could barely stay awake. A former co- worker and friend, Kimmi Shaw had talked to Kaitlyn and Kaitlyn encouraged her to come keep me company but by the time she got there I could barely keep my eyes open. So she sat and mostly watched me sleep for 2 of the 3 hours she was there. By the time the drip was done the benedryl had worn off and I was fully awake. I realized I could definitely drive myself there and home next time. But Kimmi drove me to the hospital for quick blood work and then dropped me off at home around 3:30.
Today I woke up feeling a little sick from the Retuxin. I was to report to the hospital at 8 am, then be taken directly down for the spinal fluid chemo directly after. However there was a mixup and the hospital didn't get the order so they had to squeeze me in later, which ended up being at 3 pm for the spinal fluid chemo. And I couldn't start the pink chemo until after the spinal fluid chemo because of the radiation they use to direct the needle into my spine. So, I was here at 8am but didn't start the pink chemo until 5:30pm. Frustrating! Which means I won't be released until after 6pm on Saturday.
Right now I'm not up for visitors because I'm fighting nausea and can't regulate my internal temp. I'm either cold or hot - but my temperature always shows 98.6 so it's just me. Oh, and the head nurse from last time is here, so no flowers. Ha ha.
Subscribe to:
Posts (Atom)