Hello, All My Friends

wolfen
wolfen Member Posts: 1,324

Just wanted to bring you up to speed with our situation. We are spending most of our days, running from doc to doc or hospitals, so I haven't talked to JBG for a few days. She was feeling pretty good then. Not sure when she goes for follow-up, probably soon though.

Since we go day to day(with constant changes), the plan for the next 7 days is consultation with MDA internest tomorrow morning, Urology surgery on Fri., consultation with H&N surgeon on Mon. afternoon followed or preceded by removal of catheter by Urologist(depending on selected appt.), surgery by H&N surgeon on Tues. to place port and have dental work done(found out he is also a medical dentist), and last, but not least, first 7 hour chemo infusion on Thurs.

The trick will be for his heart and kidneys to withstand all this in a short time, but MDA is trying to work as fast as possible. We went for a remapping of lung tumors today. It took forever because his heart device is not copacetic with their CT mapping device. I'm hoping the 4 days of rads will happen week after next so he'll have a coupe of days to rest first.

No treatment yet for H&N cancer except 12 weeks of chemo, followed by scan. Then determination of 35 rad treatments or not. H&N appears to be agressive so hoping chemo can hold it back. He's having more difficulty seeing from right eye as tumor does it's nasty thing.

His weight loss has become concerning(over 50 lbs. so far), so I expect a PEG tube in the near future. Most H&N patients have them, especially after surgery due to all the wonderful side effects this type of cancer comes with. Definitely a different "animal" than colon cancer, except for the chemo & rad side effects.

So, as you can see, this has become a race for life in more ways than one.

Will try to update after surgery and my tax appt. on the weekend(that's my R&R).  LOL

Hope most of you will understand why I am posting this on the Colon forum.

Luv,

Wolfen

Comments

  • lilacbrroller
    lilacbrroller Member Posts: 412
    good luck!

    Good luck with everything - hang in there!Kiss

     

    - Karin

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dearest Wolfen

    Of course you should post your news here...we are your extended family and want to know how things are going for you and yours, CRC or not.

    Yours and hubby's schedule for the next week is hard to comprehend just in keeping it all straight, much less enduring what it all means.

    I know that you must be stressed beyond belief.  I hope that you are taking care of your own health and well being needs.  Maintaining your own mental and physical strenght is so important.  As for your R&R...I sure wish you could carve out even a little bit of real relaxation for yourself.

    My thoughts and prayers are with you, hubby and JBG.

    Hugs,

    Marie who loves kitties

     

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Understood:)

    And standing with you:)

  • Luckygirl2
    Luckygirl2 Member Posts: 308
    Prayers

    Thoughts and prayers to you.

  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    Prayers

    Thoughts and prayers to you.

    Wow that's a lot to digest

    Wow that's a lot to digest .... at least they have a plan of attack.   Hopefully your son will be available to help you out some during this time so you can catch a bit of a break.  

  • wolfen
    wolfen Member Posts: 1,324
    smokeyjoe said:

    Wow that's a lot to digest

    Wow that's a lot to digest .... at least they have a plan of attack.   Hopefully your son will be available to help you out some during this time so you can catch a bit of a break.  

    Thanks, Everyone

    Thanks so much for your warm thoughts and prayers.

    Marie, I've decided that the state I live is Confusion, not Arizona after all. It can't be Central Arizona anyway because we actually had snow at MY house yeaterday. Been here for 56 years and have never seen that before. Oh, and R&R has a new meaning for me, also. It's Run & Run. Actually, I'm doing pretty well. My main issue is I can't shut my brain off at night so I only sleep a couple of hours and I really need to get to my Dermatologist. I have an angry mole on my neck(been there all my life) that is looking "nasty". I had a Melanoma removed in a different area about 15 years ago, so I know I need to go. Just trying to find the time.........

    Luv ya, Craig and I love the new avatar.

    Yes, Smokey, either my son or grandson goes with us when hubby is having a surgery, treatment, or just too weak to get around by himself. I love our big truck(except for the gas milage), but it's very difficult for him to get up into by himself.

    BTW, I talked to JBG today. She is having a hard time regaining strength, but she sees her surgeon on Mon. I told her that her body is just tired from searching for that lost spleen and doesn't know what to do yet, and I ribbed her about getting older. I think she's waiting to update you guys after her appt.

    Well, off to do some household stuff. Have to get up at 3 AM in the morning. Why bother going to bed?

    Luv,

    Wolfen

  • Varmint5
    Varmint5 Member Posts: 384
    wolfen said:

    Thanks, Everyone

    Thanks so much for your warm thoughts and prayers.

    Marie, I've decided that the state I live is Confusion, not Arizona after all. It can't be Central Arizona anyway because we actually had snow at MY house yeaterday. Been here for 56 years and have never seen that before. Oh, and R&R has a new meaning for me, also. It's Run & Run. Actually, I'm doing pretty well. My main issue is I can't shut my brain off at night so I only sleep a couple of hours and I really need to get to my Dermatologist. I have an angry mole on my neck(been there all my life) that is looking "nasty". I had a Melanoma removed in a different area about 15 years ago, so I know I need to go. Just trying to find the time.........

    Luv ya, Craig and I love the new avatar.

    Yes, Smokey, either my son or grandson goes with us when hubby is having a surgery, treatment, or just too weak to get around by himself. I love our big truck(except for the gas milage), but it's very difficult for him to get up into by himself.

    BTW, I talked to JBG today. She is having a hard time regaining strength, but she sees her surgeon on Mon. I told her that her body is just tired from searching for that lost spleen and doesn't know what to do yet, and I ribbed her about getting older. I think she's waiting to update you guys after her appt.

    Well, off to do some household stuff. Have to get up at 3 AM in the morning. Why bother going to bed?

    Luv,

    Wolfen

    Wow, Wolfen

    Your situation just seems surreal. How is hubby holding up? Wow, so much going on. I have some high calorie recipes I came up with when my daughter was losing so much weight - be happy to send them to you if you want them - shakes and things. Have you tried taking melantonin to get to sleep? That is awful when your mind is going so fast in every direction - my daughter calls that "radiohead." The cancer center naturopath put her on 20mg melatonin a day. I got some for myself, just can't remember to take it. I had bought the 3mg stuff at WalMart but couldn't tell it helped.

    I hope you get some rest soon before you melt down. I would have already melted. Hang in there - thinking of you and your family, hubby, JBG.

    Sandy

  • Chelsea71
    Chelsea71 Member Posts: 1,169
    Hang tough, Wolfen. Remember
    Hang tough, Wolfen. Remember to look after yourself. Please keep us posted.

    Chelsea
  • wolfen
    wolfen Member Posts: 1,324
    Varmint5 said:

    Wow, Wolfen

    Your situation just seems surreal. How is hubby holding up? Wow, so much going on. I have some high calorie recipes I came up with when my daughter was losing so much weight - be happy to send them to you if you want them - shakes and things. Have you tried taking melantonin to get to sleep? That is awful when your mind is going so fast in every direction - my daughter calls that "radiohead." The cancer center naturopath put her on 20mg melatonin a day. I got some for myself, just can't remember to take it. I had bought the 3mg stuff at WalMart but couldn't tell it helped.

    I hope you get some rest soon before you melt down. I would have already melted. Hang in there - thinking of you and your family, hubby, JBG.

    Sandy

    Thanks, Sandy

    I actually have access to some protein shake recipes. You know, not being in his shoes, I can't imagine the nasty taste he describes whenver he tries to eat anything. It's caused by the tumor drainage mixing with everything. YUK! He does manage a chocolate Glucerna now and then and can drink Kellog's chocolate breakfat drinks and even 3 bites of food  sometimes. I think I'll look for some kind of protein powder or Whey that doesn't come in a container sized for an elephant and mix that in his drinks. He actually ate 2 spoonfuls of ice cream today.

    I have some 1 mg Melatonin from Walmart. Maybe not strong enough. My metabolism is weird. Most sleeping aids are taken 30 minutes or so before bedtime. I have to remember to take it about 4 hours before or I'm a zombie the next day.

    Luv,

    Wolfen

  • wolfen
    wolfen Member Posts: 1,324
    Chelsea71 said:

    Hang tough, Wolfen. Remember
    Hang tough, Wolfen. Remember to look after yourself. Please keep us posted.

    Chelsea

    Thanks, Chelsea

    How are you guys doing? Haven't read through new posts yet, in case you've posted.

    Urology surgery went pretty well today. Anesthesiologist decided to use spinal tap instead of completely out with breathing tube because of H&N cancer. He had a little trouble getting his legs to "wake up", so was in recovery for 2 extra hours. They just figured it was because his heart can't pump off meds as fast as most people.

    Everything was fine until we got to Wal-Mart to fill the scripts. The doctor had written a script for Vicodan and forgot to put the dosage. The pharmacy left repeated messages at his office for about an hour, but no one called back. So I said "screw it".  Hubby was waiting patiently in the truck(his idea to come along), but I figured he'd about had it by then. I have some pain meds left which are the same stuff as Vicodan, so I gave him one. Hoping I have enough to get him through the weekend, if he needs them.

    Boy, I'll tell you. I've gotten to where I read the fine print in everything. One of the meds he was prescribed for 7 days says in BIG LETTERS not to take for more than 2 days if you have decreased kidney function. Well, duuuuh, that's part of the cause for this whole mess to begin with. So, I'll have him do the 2 days and then call the doctor, providing they're answering their phone by then. CRAZY! CRAZY!

    At least he's sleeping now.

    Luv,

    Wolfen

  • annalexandria
    annalexandria Member Posts: 2,571
    wolfen said:

    Thanks, Chelsea

    How are you guys doing? Haven't read through new posts yet, in case you've posted.

    Urology surgery went pretty well today. Anesthesiologist decided to use spinal tap instead of completely out with breathing tube because of H&N cancer. He had a little trouble getting his legs to "wake up", so was in recovery for 2 extra hours. They just figured it was because his heart can't pump off meds as fast as most people.

    Everything was fine until we got to Wal-Mart to fill the scripts. The doctor had written a script for Vicodan and forgot to put the dosage. The pharmacy left repeated messages at his office for about an hour, but no one called back. So I said "screw it".  Hubby was waiting patiently in the truck(his idea to come along), but I figured he'd about had it by then. I have some pain meds left which are the same stuff as Vicodan, so I gave him one. Hoping I have enough to get him through the weekend, if he needs them.

    Boy, I'll tell you. I've gotten to where I read the fine print in everything. One of the meds he was prescribed for 7 days says in BIG LETTERS not to take for more than 2 days if you have decreased kidney function. Well, duuuuh, that's part of the cause for this whole mess to begin with. So, I'll have him do the 2 days and then call the doctor, providing they're answering their phone by then. CRAZY! CRAZY!

    At least he's sleeping now.

    Luv,

    Wolfen

    Hope things are settling down for you both a little bit, Wolfen-

    you must be feeling awfully overwhelmed by all of this.  For sleep, you could try an anti-anxiety med like Ativan.  It's very fast-acting, and if you wake up in the middle of the night you can take a little more to get back to sleep.  No hangover feeling in the morning either, like you get with some of the regular sleep meds.  I was told to use it when I was tapering off steroids, and couldn't sleep for more than an hour at a stretch, no matter how exhausted I got.  Worked very well for me, better than Ambien, which I also tried.  Sleep is just so critical, esp for our caregivers.  You've got too much on your plate to go without rest on top of everything else!  Hang in there~AA

  • steveandnat
    steveandnat Member Posts: 886
    So much going on

    Praying hard that everything goes well with so much happening.  Take care of yourself too.  Jeff

  • k44454445
    k44454445 Member Posts: 494
    Wolfen

    WOW! just reading about what you are doing made me tired! let alone doing it. please try to take care of yourself as i worry that you will get run down. you both are always in my prayers but i will pray harder.

    hugs

    judy

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    dear wolfen

    just my prayers dear friend.

    hugs,

    pete

  • thxmiker
    thxmiker Member Posts: 1,278
    wolfen said:

    Thanks, Chelsea

    How are you guys doing? Haven't read through new posts yet, in case you've posted.

    Urology surgery went pretty well today. Anesthesiologist decided to use spinal tap instead of completely out with breathing tube because of H&N cancer. He had a little trouble getting his legs to "wake up", so was in recovery for 2 extra hours. They just figured it was because his heart can't pump off meds as fast as most people.

    Everything was fine until we got to Wal-Mart to fill the scripts. The doctor had written a script for Vicodan and forgot to put the dosage. The pharmacy left repeated messages at his office for about an hour, but no one called back. So I said "screw it".  Hubby was waiting patiently in the truck(his idea to come along), but I figured he'd about had it by then. I have some pain meds left which are the same stuff as Vicodan, so I gave him one. Hoping I have enough to get him through the weekend, if he needs them.

    Boy, I'll tell you. I've gotten to where I read the fine print in everything. One of the meds he was prescribed for 7 days says in BIG LETTERS not to take for more than 2 days if you have decreased kidney function. Well, duuuuh, that's part of the cause for this whole mess to begin with. So, I'll have him do the 2 days and then call the doctor, providing they're answering their phone by then. CRAZY! CRAZY!

    At least he's sleeping now.

    Luv,

    Wolfen

    We are sending our coninued

    We are sending our coninued thoughts and prayers.

     

    Best Always, mike