Crying times

It made me cry a bit before treatment, saying goodbye to my old self. I am nearing 1 year post treatment. Things are getting better at a snails pace, but Ill take it!!!

I had the peg tube for 5 months and it was a life saver, especially for hydration. I am hoping that you have some kind of support system as speaking for myself, it was my lifeline. What is your diagnosis? Are you HPV+?

I remember the 'rush' feeling when my tumor was discovered and I was told that it was likely malignant.  It is the only time in my life (64 years) that time seemed to stand still.

I was staged at IVa, the primary tumor was 30mm and the largest of the adjacent lymph nodes was 60mm.  My medical oncologist informed me that this level of disease had only a 30% 5 year survival rate (I'm at 6 years since diagnosis). 

The first weekend my wife and I grieved (for lack of a better descriptive word) about having cancer but then decided that "it is what it is" and that spending time and wasting effort on worrying would not have any positive impact.  I decided that I was going to live. I accepted that I would feel sick, have pain and what have you, but I made the conscious decision that I was going to do all I could to survive and be there for my wife and daughters.

There will be challenges.  My treatment plan had 3 phases.  The first phase would be induction chemo, 3 sessions, each to be 5 days as an in-patient on continious high dose chemo (1 day of taxotere, one day of cisplatin and 3 days of 5FU)  I can honestly say that I've never felt so sick in all of my life.  That first session radically reduced the palpable size of the lymph nodes, but it also put me into renal compromise so the decision was made to abandon the next two sessions and move into concurrent rads/chemo.

I had extensive dental work done, had one tooth removed and a bunch more filled, I got a feeding tube and while the description of how they do it is intimidating, the actuallity was not all that bad at all.  Using it had a learning curve, the most practical advice I can give is if you have the clamp open and need to cough or sneeze, close the clamp before you do, otherwise everything will come flying out of the tube.  I dealt with the 20 or so inches of tube by using a product called 'Spandage", an mesh sleeve that I could slip around my middle and it kept the tube in place without tape.

The mask was a bit challenging, when they mold it, make sure that they relieve the  pressure on your nose and eyes, it will save discomfort down the road.

I did all 33 rads without any anti anxiety medications and spent the time doing math.  I counted the number of machine moves and stops, the number of seconds for each and then would calculate mentally the percentage complete for each move, each exposure, the summary for each session and the remaining percentages.  It helped tremendously.

Recovery was long, I had my last rad July 5 and was able to return to work in early September but needed to take the occassional nap. 

the last phase of treatment was surgery, the PET scan post rads was described as very good, and the initial decision was to just wait and watch but the tumor board elected to pursue surgery.  I had a selective neck dissection in October and that sounds scary as well but was not all that difficult to go through.

The scary part was that 5 months later the next PET showed more issues so a second surgery was set up and was going to be a modified radical, testing of nodes and tissue harvested at the start of surgery showed no disease so no modified radical. 

The most depressing part of the entire experience was during rads, saliva had disappeared and my sense of taste was amost gone and my medical oncologist said that the condition was likely permanent.  Talk about devastating.  Talking with my radiation oncologist about it, I was told it would come back, it might be reduced but it would.

Taste recovered over a year, one of the surprising things was that I couldn't tolerate really cold food items like ice cream.  that took over 2 years to come back!  Saliva is around 70% of what it was so I usually need to have small sips of water with most of what I eat, but it beats starving....

it's challenging but life is worth living!

They gave me bottle after bottle of liquid hydrococodone and truthfully about the only time I really needed it was after the tonsilectomy and maybe a little after the wisdom tooth extraction but I took a "chug" just about everyday whether I needed it or not and I pretty much just breezed thru the 33 rad. and 3 chemos. Best anti-depressant there is.

Big caveat tho, when it came time to get off the stuff, it's wasn't all that easy. Felt pretty crappy for a few weeks but all in all it helped me so much I'd do it again in a heart-beat.

Also, the mask isn't near as bad as I thought when they first made it. I just kept telling myself that it is either this, or no cure.

Hi Sue!

I think all of us who had a radiation plan,which is the majority got a mask fitted for the radiation. My doc prescribed Lorazepam 1mg. I would take it 30 minutes before my treatment. Also, I did a playlist of 5-6 favorite songs which I could sing along to inside my head during the treatment, and the tech would hook up my phone which had the playlist to a speaker. With the drug, I was always very relaxed.

The very biggest issue is going to be hydration and nutrition. Like Matt says, get the smoothies/peg food down any way you can. Your swallowing muscles can lose their ability in very short order, so be sure to keep swallowing even tiny sips of water. Hopefully you are one of the lucky ones who can take their calories by mouth. I was not. By week two, I was 100% dependant on my feeding tube. Luckily I had a fantastic formula called "Liquid Hope". It is an incredible blend of all vegetarian proteins and vitamins/minerals..perfectly balanced.My Kaiser health insurance covered it. I would check and see if your insurance will cover it...great stuff. My kids made sure I took a few sips of water every few hours to keep my swallowing muscles going. I hope you can find someone who can be with you during the hours that your boyfriend cant. And keep a journal with all of the docs, pharmacists, specialists names and numbers and an ongoing record of all medications, times taken etc. I am always here to help you having been down this very road.  HPV is very curable. This treatment is a ****, and the recovery is so slow at times that you dont even see it happening. I am now a year out. I got down to 89 lbs and looked like a typical cancer patient...skeletal. Now, I am back up to my normal 103 lbs, going to the gym and weight training, and back to eating most everything. People I meet would never know I was ever sick. And best of all, I am cancer free. Life is so good!!!

I am excited to help you through this. I know you can do it!!!

Nancy

But I think it just hit home of what was going to happen for the next few months.The rad. treatments don't last very long at a time and when you first start and think OMG, I have this many to go....but it goes pretty fast.

Like Nancy said, the Liquid Hope is good stuff and I'm still drinking it even tho I never used it in the tube.