Re: Re: How is Randy?

[Guest guest]

Randy, kudos to you for taking control of your environment, of the things you CAN control right now. And it sounds like you have been very well informed about what to expect in the upcoming months. It also sounds like there are a few hopeful optimistic things that may be going in your favor. You certainly have a crew of people on this board who will be praying for you, meditating for you, sending positive thoughts your way. I know exactly the bed chair thing you are taking about...I've lusted after it repeatedly in the SkyMall magazine. It sounds like the perfect thing to help make your recovery a little more efficient and comfortable. What a wonderful thing that you are so surrounded by people who love you , who have your back. That will make all of the difference...all of that positive energy and love and compassion surrounding you...they won't let you fall. Don't you worry. They won't let you

fall. OK. So, you are ready. You are starting that long march. And we will be here beside you, singing to you when you are low...cheering you on when you get tired. If there is anything more active that you need from us, that may need...please do put out that request, and we will band around you. OK? God bless you. We're here by your side, my friend. Robynnjackpoint_94401 wrote: Just got home from the second round of chemo, and, just like last time, I feel fine - but now I expect to conk out in a day or so for a day, which prospect does not bother me. Still no nausea or side effects to speak of, and I'm about to eat leftover egg fu yung from my

birthday dinner! I will see Arlene Alloway tomorrow for a nutritional review and check - I'm now at 241, down 40 pounds from surgery. I am hoping to stay at 240 into the start of radiation, which should be between April 4 and April 9. Whenever they schedule that, then they will also schedule the next chemo for the same day after the radiation, so that will be a LONG day. Then radiation five days a week for six to seven weeks, with one more chemo in the middle and one chemo on the last day of radiation. If you take the average reaction, they tell me that I will be able to take myself to radiation for the first two weeks or so, then I will need enough pain meds that I won't be able to drive. By week 4 of radiation, I will likely be unable to eat solid foods. By week 6, probably unable to swallow and a gastric feeding tube into the unused portion of my stomach will be installed. That tube will stay in and be my source of nutrition

for anywhere from three weeks to nine months. About two months to ten weeks after the end of radiation, they will perform what they call a [modified] radical neck dissection to remove the rest of the cancer and the affected lymph nodes. Unfortunately, they can't do this kind of surgery laparoscopically, so it will be a couple weeks of somewhat painful recovery - but still not too bad, and nothing compared to the recovery from the radiation burns in the mouth and throat. They liken recovery to eating to bariatric post-op Stage 1, 2, and 3, and that was not bad as far as I am concerned, only, of course, there will be much more pain. Taste will disappear around week 4 or 5 (and will change from week 2), and it comes back anywhere from two months to four years later, and how much it comes back varies for many people. Since my mouth and upper palate are not much involved, I may do better on taste than most. I have moved

furniture and closet space around, and now I have room for additional storage of medications close to the bed, and room for a loveseat-sized sofa sleeper (sleeping one person in a twin innerspring mattress) in the bedroom next to mine, which I use as a library/office. I picked one out and put down a deposit, my sister will help me finalize the color choice tomorrow morning, and they will deliver it in ten days or so, doing a rush job for me under my medical circumstances and charging me next to nothing - $30 - for delivery, which is really nice. I have just measured the space again, and I have room for an end table with a lamp next to this bed, and I can add a swivel of utility lamp to the top of the adjavent bookcase, too, if more light is needed. So if my sister needs to stay with me, or if I am too unwell or too uncomfortable for my girlfriend to share my bed, they will have a space to sleep where they can keep and eye and

ear on me more easily than the sofabed in the living room - and it will be comfortable as a sofa and as a bed and as a place to sit and read. Two computer desks, one computer, network access and laptop docking station - my girlfriend, who is a Yahoo! honcho, says she could work from my house if she absolutely had to. Of course, the excellent library and the video?DVD library and the kitties are major distractions. Among other things, for my birthday, my girlfriend is getting me a really nice desktop stereo system for my bedroom, so I can listen to music or books on tape or DVD or MP3 when I am too sick to concentrate on TV or holding a book. The rest of my family mostly got me what I had asked for, which was gift cards from places I can buy new clothes for after more weight loss. My brother got me a great gift, though. When my sweetie took me to Las Vegas, I saw these in the in-flight shopping catalog and said I should get one

before my treatment starts, and she thought it was a great idea. Well, my brother travels for work all the time, and I guess he saw them too and had the same idea. I got a really high-quality bed chair, that lets you sit up very comfortably in bed. It also makes you look less like an invalid and more comfortable about having people visit you in your bedroom, and I have a feeling that will be something that will become increasingly important to me over time. It has a massage vibrator, a recessed cup holder, and pockets for books, magazines, and remote controls, and it also folds flat for easy storage or just tossing aside. Aside from how comfortable and how cool this thing is, there's always the extra thrill of the mindreading thing when you get a gift you've both been thinking about without each other's knowledge. [Like when I opened my first Chanukah present from and it was the original soundtrack from Wicked, and she

opened my first present to her and it was the complete set of the Maguire books - Wicked and all the sequels and other fairy-tale books of his.] So I had a lovely birthday, a great dinner and gifts, so far a pretty easy time of it with chemo, and the teeth are just about all ready for the radiation. is bringing me a Yahoo! gimme cap to wear to cover the hair loss, the beard is shaved (yuck I hate how I look!), the bed and bedrooms are more or less all set up...if you're about to descend into hell, having the best seat in the house is about the best you can hope for...I can't complain. Thanks for all the good wishes, and let me send them back to Donna again, to Robynn, to , and everyone else. You know I'm gonna be posting here!Randy> >> > Just to let you know - my chemo starts tomorrow. Because my cancer > > is growing so fast, the doctors decided to use different > > chemotherapy agents, and as a result I will not have to have a > port > > surgically installed to drip in what they had been planning to > use. > > However, the agents they will use are

toxic enough and have enough > > nasty side effects that I will be sedated, and I will also be > > getting some IV benadryl to combat expected side effects, so I'll > be > > pretty loopy. Same treatment next Tuesday, and then, if all the > > appointments and timing work out, I will begin the five-days-a-> week > > radiation treatments the following Monday or Tuesday, with chemo > on > > the first day, three weeks later, and on the last day. > > > > While I continue to feel pretty good (well, up to maybe 9:30 > > tomorrow morning, anyway), and still able to eat without too much > > difficulty, there is no doubt that I can feel that the tumor has > > grown. It becomes increasingly difficult to swallow solid foods, > and > > my voice has become incresingly distorted and weaker. It's getting > > higher, which

suggests to me that the air is vibrating in a much > > narrower passage (which I am calling the piccolo-versus-tuba > > theory). I hope I don't lose speech altogether, although it would > > surely only be temporary - there's nothing near my vocal cords or > > larynx. > > > > I have been doing all I can to keep the weight up, and I am now > down > > to 243, but I have stayed between there and 249 for almost two > weeks > > now, so I am fighting the good fight there. No matter how the > > radiation affects my ability to eat, though, I expect that I will > be > > down a hundred more pounds over the next three to four months. > That > > would be a loss of 50% of my body mass in just over five months -> a > > good bit faster and farther, I daresay, than most WLS patients. > When > > I look at weight

loss that rapid while under the strain of the > > cancer and the therapies, I count every second I spent exercising > as > > having built a wall between life and death from cardiac > exhaustion. > > > > My 49th birthday is coming up on March 31, but since I may have > > started radiation by then, we decided to celebrate a few days > early, > > this coming Sunday. Here's hoping it won't be my last!> > > > Randy> >> > > > > > >

[Guest guest]

Hi Randy- Wow you should consider writing stories you have a good flow with words ! Sounds like you are one organized man. Glad to hear that your feeling ok thus far, your gift of the pillow to sit up in bed sounds awesome ! Sounds like you had a good birthday ! I like to get chicken egg fo yueng sometimes too,Mostly i like to get War Won Ton soup it has such a blend of meats that you can get quite a bit of protein out of it. Good to know you have your dvd supply and a kitty for company...........animals at a time like this our good, i should know i have two dogs and five cats ! good to hear from you ! Colleenjackpoint_94401 wrote: Just got home from the second round of chemo, and, just like last time, I feel fine - but now I expect to conk out in a

day or so for a day, which prospect does not bother me. Still no nausea or side effects to speak of, and I'm about to eat leftover egg fu yung from my birthday dinner! I will see Arlene Alloway tomorrow for a nutritional review and check - I'm now at 241, down 40 pounds from surgery. I am hoping to stay at 240 into the start of radiation, which should be between April 4 and April 9. Whenever they schedule that, then they will also schedule the next chemo for the same day after the radiation, so that will be a LONG day. Then radiation five days a week for six to seven weeks, with one more chemo in the middle and one chemo on the last day of radiation. If you take the average reaction, they tell me that I will be able to take myself to radiation for the first two weeks or so, then I will need enough pain meds that I won't be able to drive. By week 4 of radiation, I will likely be unable to eat solid foods. By week 6, probably

unable to swallow and a gastric feeding tube into the unused portion of my stomach will be installed. That tube will stay in and be my source of nutrition for anywhere from three weeks to nine months. About two months to ten weeks after the end of radiation, they will perform what they call a [modified] radical neck dissection to remove the rest of the cancer and the affected lymph nodes. Unfortunately, they can't do this kind of surgery laparoscopically, so it will be a couple weeks of somewhat painful recovery - but still not too bad, and nothing compared to the recovery from the radiation burns in the mouth and throat. They liken recovery to eating to bariatric post-op Stage 1, 2, and 3, and that was not bad as far as I am concerned, only, of course, there will be much more pain. Taste will disappear around week 4 or 5 (and will change from week 2), and it comes back anywhere from two months to four years later, and how much

it comes back varies for many people. Since my mouth and upper palate are not much involved, I may do better on taste than most. I have moved furniture and closet space around, and now I have room for additional storage of medications close to the bed, and room for a loveseat-sized sofa sleeper (sleeping one person in a twin innerspring mattress) in the bedroom next to mine, which I use as a library/office. I picked one out and put down a deposit, my sister will help me finalize the color choice tomorrow morning, and they will deliver it in ten days or so, doing a rush job for me under my medical circumstances and charging me next to nothing - $30 - for delivery, which is really nice. I have just measured the space again, and I have room for an end table with a lamp next to this bed, and I can add a swivel of utility lamp to the top of the adjavent bookcase, too, if more light is needed. So if my sister needs to stay

with me, or if I am too unwell or too uncomfortable for my girlfriend to share my bed, they will have a space to sleep where they can keep and eye and ear on me more easily than the sofabed in the living room - and it will be comfortable as a sofa and as a bed and as a place to sit and read. Two computer desks, one computer, network access and laptop docking station - my girlfriend, who is a Yahoo! honcho, says she could work from my house if she absolutely had to. Of course, the excellent library and the video?DVD library and the kitties are major distractions. Among other things, for my birthday, my girlfriend is getting me a really nice desktop stereo system for my bedroom, so I can listen to music or books on tape or DVD or MP3 when I am too sick to concentrate on TV or holding a book. The rest of my family mostly got me what I had asked for, which was gift cards from places I can buy new clothes for after more weight loss.

My brother got me a great gift, though. When my sweetie took me to Las Vegas, I saw these in the in-flight shopping catalog and said I should get one before my treatment starts, and she thought it was a great idea. Well, my brother travels for work all the time, and I guess he saw them too and had the same idea. I got a really high-quality bed chair, that lets you sit up very comfortably in bed. It also makes you look less like an invalid and more comfortable about having people visit you in your bedroom, and I have a feeling that will be something that will become increasingly important to me over time. It has a massage vibrator, a recessed cup holder, and pockets for books, magazines, and remote controls, and it also folds flat for easy storage or just tossing aside. Aside from how comfortable and how cool this thing is, there's always the extra thrill of the mindreading thing when you get a gift you've both been thinking

about without each other's knowledge. [Like when I opened my first Chanukah present from and it was the original soundtrack from Wicked, and she opened my first present to her and it was the complete set of the Maguire books - Wicked and all the sequels and other fairy-tale books of his.] So I had a lovely birthday, a great dinner and gifts, so far a pretty easy time of it with chemo, and the teeth are just about all ready for the radiation. is bringing me a Yahoo! gimme cap to wear to cover the hair loss, the beard is shaved (yuck I hate how I look!), the bed and bedrooms are more or less all set up...if you're about to descend into hell, having the best seat in the house is about the best you can hope for...I can't complain. Thanks for all the good wishes, and let me send them back to Donna again, to Robynn, to , and everyone else. You know I'm gonna be posting

here!Randy> >> > Just to let you know - my chemo starts tomorrow. Because my cancer > > is growing so fast, the doctors decided to use different > > chemotherapy agents, and as a result I

will not have to have a > port > > surgically installed to drip in what they had been planning to > use. > > However, the agents they will use are toxic enough and have enough > > nasty side effects that I will be sedated, and I will also be > > getting some IV benadryl to combat expected side effects, so I'll > be > > pretty loopy. Same treatment next Tuesday, and then, if all the > > appointments and timing work out, I will begin the five-days-a-> week > > radiation treatments the following Monday or Tuesday, with chemo > on > > the first day, three weeks later, and on the last day. > > > > While I continue to feel pretty good (well, up to maybe 9:30 > > tomorrow morning, anyway), and still able to eat without too much > > difficulty, there is no doubt that I can feel that the tumor has > > grown. It

becomes increasingly difficult to swallow solid foods, > and > > my voice has become incresingly distorted and weaker. It's getting > > higher, which suggests to me that the air is vibrating in a much > > narrower passage (which I am calling the piccolo-versus-tuba > > theory). I hope I don't lose speech altogether, although it would > > surely only be temporary - there's nothing near my vocal cords or > > larynx. > > > > I have been doing all I can to keep the weight up, and I am now > down > > to 243, but I have stayed between there and 249 for almost two > weeks > > now, so I am fighting the good fight there. No matter how the > > radiation affects my ability to eat, though, I expect that I will > be > > down a hundred more pounds over the next three to four months. > That > > would be a loss of 50% of

my body mass in just over five months -> a > > good bit faster and farther, I daresay, than most WLS patients. > When > > I look at weight loss that rapid while under the strain of the > > cancer and the therapies, I count every second I spent exercising > as > > having built a wall between life and death from cardiac > exhaustion. > > > > My 49th birthday is coming up on March 31, but since I may have > > started radiation by then, we decided to celebrate a few days > early, > > this coming Sunday. Here's hoping it won't be my last!> > > > Randy> >> > > > > > >