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3 weeks post Tx Update

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

All,

I want to take a minute and say "Thank You"! You have all been there for us down this road, and I am sure will be there as we continue down the road. You held my hand, you listened, you gave advice, you shared your personal experience, all while you were undergoing your own personal experiences. At first I think Dan thought it was nice I had someplace to talk with out scaring our friends and family with simple truths, and then he started asking if I had read the answer to his questions, and I gave him the answers that I knew from keeping up with others going through the stages, and searching, or I asked his questions. So to each of you we both say thank you.. and you are always in our hearts. (Sorry to say you are stuck with us now! We are family. ;)

Today we start week 4 post treatment... and I thought those who just finished might like to see our experience too.

Updates/week 3 experience:

Blood work shows, Dan is anemic and dehydrated and should still avoid crowds. (New blood work again tomorrow)

His neck looks great today! Considering it was very very very red and open two weeks ago.. can't say enough about calendula cream and aloe. If you didn't know and just met him, you would probably not notice.

His mouth and throat.. less pleghm than before, but still very tender, and painful to swallow still. He says his throat feels like it is swollen all the time and the roof of his mouth is still driving him nuts. It impedes food greatly.

His ability to eat, very slow progress. Fish filets in herb'd butter and cereal seem to be the best right now. He's been on the TPN for a week now and not only is he holding his 142lbs for an entire week.. he gained 1 lb.. 143!

His nausea meds.. he skipped a dose on Saturday thinking he didn't need it, it only took til Sunday at noon for the meds to catch up again.

His pain meds.. he doesn't think the patches are doing a thing. He hasn't taken any break through meds in a week. I guess we will talk to the doctor about decreasing them next week? I see a learning curve coming up I am afraid.

His attitude, he is cranky and grumpy and complains about the competency of just about anyone who prepares food.... which is great! Last week he didn't care, he was complacent about everything.. he must be feeling better.

Today we finally got out of the house for a car ride. It took me 4 days of convincing, before I said, you have no choice, you are coming with me.. he didn't have to get out.. but it did him good. His outlook is a little brighter tonight. Tomorrow, we are going to take a short walk.. no options.

We meet with 3 of the doctors next Monday.. ENT Surgeon, Oncologist and Radiologist Oncologist. And we only have 2 months and 1 week til his PET scan.. but who's counting? :)

If anyone has advice to our update.. you know I'd love to hear it!

Thanks again.. Kari & Dan

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

4 weeks out!!?? Congratulations! Now that the neck is feeling better it should start to make the rest of healing seem much easier.
Dan, my only advice is to listen to Kari as far as getting out is concerned. I fought it too, didn't want to do much of anything. Well let me rephrase that, I wanted to want to do things but I just couldn't muster up the energy to want it bad enough. Only someone who's been down our road can understand that however, once I finally did listen to my husband and get my butt out of the recliner and walk our small block. It honestly did make me feel better afterwards and I slept better. Give it a shot and see if you feel the same.

Other than that, just keep healing and getting stronger each day.
Billie

phrannie51's picture
phrannie51
Posts: 3729
Joined: Mar 2012

He's only 3 weeks out of Tx, and how many folks have we  heard say that these weeks were harder than treatment, itself?  He's just going to get better and better....slower than I'm sure he'll be satified with, but then....he's a man...LOL.  But geez...he gained a little weight....that didn't happen for me for 3 months...

Greg did the same thing to me about getting out, and going for a ride in the car....I didn't want to go anywhere, and he practically carried me kicking and screaming....but wow....it really did make me feel better....it was wonderful to just drive around in the country, to go to the lake, and see something different than these walls. 

I was anemic still, 3 months after treatment ended....the oncologist wasn't concerned about it....he said it just takes time for the bone marrow to get everything back to normal....It's only been since the middle of January that the mind numbing fatigue totally went away....so I'm figuring that my marrow must have done it's job.  Anyway, they'll keep close track of his blood values in the next 3 months...I think I had to go in every week for a CBC from Sept to Dec.

p

PS....I loved that Calendula cream and the Aloe, too...

 

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Sounds like you have it under control Kari...

If Dan needs one of those head slaps on occasion, I think you are the perosn to get the job done, LOL...

You both are doing great...

John

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Hi Kari,

My loved one is 10 wks post and he has made the most improvements in the last couple of weeks in regard to pain and meds. He was doing the fentayl patches at 75mg for the later part of tx and gradually weind himself down over the last 30 days to 12.5. He will have two weeks of that and then no pain meds. It's been a challenge at each drop, but within a few days his body seems to adjust. Throat is still a bit raw.

Soft foods(applesauce, pudding, peaches, soups, etc)and Ensure/Boost are all he can do right now. Just this week he has tried some carrots, spaghetti, and even a pancake with syrup in the last week and did well. Although the taste isn't there, he's still chewing and gaining some calories. He was at 230 before tx and is down to 190. His appetite is just not there. But, he just keeps trying.

Our Pet scan is at the end of the month.....(I hear you about....who's counting?...LOL).

Thanks for sharing your update with us. 

God Bless,

Cureitall

DX: Aug '12  Male age 51 Stage IV SCC BOT w/ 2 lymnodes, HPV+

TX: 7 wks concurrent Rads/Chemo (Carboplatin & Paclitaxel) No surgery.

Doing well.  

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