jacquesusa's Cancer Blog
October 25, 2008
| Chapter 10... Life 4 months after radiation. | Views: 1312 |
It has been slightly more than 2 months since my last post. As I write today it is 4 months and 21 days since the end of my radiation treatment. Before I go on to describe where I stand I want to go back to my fourth week( of 6 weeks) of radiation. My mother who had advanced Parkinson’s had suddenly passed away during the second week of my radiation, My mother was cremated and during my fourth week of treatment at our church my wife read the eulogy I had written for my mother as I had no voice left. I then proceeded to make arrangements to honor my mother’s wishes to be buried in her family grave next to her mother and sister back in France. I would also bring my father’s ashes who had passed away a year earlier. As I was in no condition to travel, I figured by September 6th ( 3 months after last radiation) I should be pretty much in healed and ready to make the trip so I booked the flight.
The first two months since my treatment are documented in my previous postings.
As September approached, I started to realize that I was nowhere where I thought I’d be in terms of strength. In mid August I still was mostly exhausted, I was starting to wean my self from vanilla and chocolate Ensure bottles which were the only foods I could really tolerate. I forced my self to start eating canned peaches. The syrup was soothing and and felt great on my dry throat. At first they had no flavor, totally void of sweetness sensation as my taste buds were still out of whack. Then slowly I could taste sweetness.
With two weeks to go before I would have to fly to France, I was seriously weaker in all aspects than I could have imagined 3 months earlier when I made my flight reservations. I seriously considered canceling my flight as I wondered how I would manage to eat and have enough energy to make it through the flight, the jet lag, the inability to find food I could eat.
In the final 10 days before my flight I weaned my self from the Ensure which had lived on since even before my radiation had begun on April 22. (I started on Ensure back in March when I had my second surgery to remove my remaining left tonsil). I the final days before traveling, I graduated to diced peaches in syrup, very soupy oatmeal drowned in maple syrup and I tried anything that was easy to swallow and that my still constricted throat would allow. At first it had to be mushy and sweet stuff as this was the easiest to get down. A sip of Milk or rice milk also helped after every bite.
I decided to bite the bullet and fly to France as scheduled. I would find a way to find something to eat. Just to give me a running start, I loaded up my suitcase with single serving sliced peaches and lots of rice milk and some Ensure just to be sure.
Sept 6th 2008. “Two funerals and wedding.”
My wife and I show up at JFK. A surreal experience as I am carrying boxes of my mom and dad in each hand to put place in the overhead compartment above my seat.
I had all the necessary papers from the Consulate to present to the airline and TSA. Mom and Dad made it through the security x-ray conveyor belt though they were asked to go through another 2 times just to be sure they weren’t terrorists in a 12 inch box.
On the flight I took a couple of bites of the airline food, but it was a real struggle to get anything down. I supplemented my few nibbles with some peaches.
When we arrived the next morning in France I was dead exhausted and slept most of the day. I was so tired I wondered if I had not made a mistake taking this trip. The first couple of days were difficult as I had jet lag and had to find stuff that I could eat. Also walking a city block was exhausting and I felt like an old man. I found a cafe that had very gooey apple pie. I added also some sorbet to my diet. By the third day I had regained some energy, was walking a little more everyday, and was gobbling up the gooey apple pies called ‘tarte Tatin’, drinking water and Pelligrino non stop as I still had zero saliva. The funeral was emotional for me yet performed with bureaucratic automation. A couple of guys at the cemetery had opened up a hole in the family grave. One of the guys climbed down and I handed him my Mom and Dad. He proceeded to seal up with cement the cement wall which had been sawn open.
The priest never made it. So we took a few pictures around the family headstone and returned to the hotel. I felt like I had dropped off a couple of packages at Fedex.
The rest of my two weeks in France were re-energizing. I did a lot of walking which slowly made me feel alive again. I was eating increasing amounts of carefully selected foods. I even tried a bit of steak, with a side of extra sauce to help it slip down. I attended a cousin’s wedding in France. I basically spent my time sitting with my 88 year old aunt who had more energy than I did. It put things in perspective that I still had a long road ahead before I would be my old self.
Since my return to NY on Sept 21st, I have felt re-energized. I am eating solid foods provided they are moist and saucy and I am working full time though I do crash by 4pm.
In the last two weeks I’ve noticed that my saliva is coming back somewhat. From absolutely nothing it is now a thick pasty consistency. It’s better than nothing and I expect this will evolve over the next months. Also my facial hair has come back on my cheeks. More on the left side than the right side which got blasted harder. I still have no hair on my neck line. Smooth as when I was a kid. All in all I am grateful to God and my wife, family and friends who have helped me rediscover the ‘sunny side of life’.
My next big challenge is this Monday Oct 27. My first PET scan to see if anything has returned. I am not scared, but it is a date that is never far from mind.
***Well I screwed up on my PET scan. I wasn’t supposed to have any food before going there, so now the tests are rescheduled for tomorrow & next week. The doctor did see me and all looked good from the outside and it was great to see my hospital staff friends again. Every time i walk in to that building i still have trouble realizing that the whole radiation thing is behind me.
Carpe Diem.
Chapter 10... Life 4 months after radiation., 
14 comments)
tpalombo 
Thanks for your support -
I was so happy to see a post from you, and learn that you are okay and feeling better. Please know that you are never alone.
always thinking about you. i’m happy that you gave us a update! it’s great to hear your doing well! cant wait to hear from you again. =) x0x rachel
It is so good to hear from you and hear about your trip to France. You have my heartfelt sympathy for the loss of your Mom. I am so happy that you are beginning to improve.
My thoughts and prayers will be with you on not only on Monday but each and every day.
Blessings,
Joyce In NC
Wonderful to hear you are coming back, Jacques! I promise you it will get better. It has been over a year for me since my last radiation and I can eat almost anything. But yes I recall having to carefully select food… I recall going to seminars and Christmas parties where there was nothing I could really eat. So I would pack an Ensure just in case also…
It is slow but it does get better. Jacques I was reading thru your blogs, did they ever determine for sure that your tonsil was the primary site? Or were you always considered unknown primary? I was just wondering. I looked at your pictures and I do think you had stronger radiation than I did. Mine was pretty focused on my left side since that was the culprit tonsil.
Gosh I am so glad you are starting to eat stuff. And you had some steak. That actually was one of the first “real” foods I ate again, but very rare so it would be real juicy :)
Really though it is a slow healing, isn’t it? I had SUCH a hard time dealing with that. But you sound very strong and upbeat, even through the trip and the funerals. I know what you have been through and are going through and I admire you very much.
Dear Heidi, “indigogirl”,
Thank you so much for your thoughtfulness and kind comments. To answer your first question, i was diagnosed with an unknown primary and still am today. Before my radiation started they did a second stronger pet scan and though that perhaps they saw something in my remaining left tonsil, so i went back in to surgery to have it removed, alas they didn’t find it there either. It did offer me both a couple week reprieve from the start of radiation and also a ‘boot camp’ dry run for the attacks and pain i was sure to be facing once the radiation started.
Tomorrow is my first PET scan since my radiation. To be perfectly honest i am a bit apprehensive about the outcome but am ready to accept what results it produced.
I read yesterday on this site’s blog ,of the passing of 20 year old Gemma which has affected me deeply. She took her predicament whith such grace, dignity and wisdom and seemed to savor the precious good moments in her all too short life.
This journey into the world of cancer has been a blessing of sorts. It has made me a better person. It has made me realize I am far from the only person with a personal burden or problem, and more importantly there are countless people i have met and even more whom i will never know who have it far worse than me.
No matter what happens in the future or might happen, we can’t let it spoil our present as it is the only time we know we have control over. Gemma is in my prayers, as are you :)
Glad to hear you’re able to eat more. Good luck with your PET tomorrow!
Thinking about you. I cannot even imagine… Will keep you in my prayers! That Pet scan MUST come back clean. I insist!
***Well I screwed up on my PET scan. I wasn’t supposed to have any food before going there so it’s now rescheduled for next Tuesday morning Election day! The doctor did see me and all looked good from the outside and it was great to see my hospital staff friends again. Every time i walk in to that building i still have trouble realizing that the whole radiation thing is behind me,
Jacques,
It is great to hear of your improvements. And I have alot of confidence that your PET scan will be clean and my was. With the amount of radiation you endured, I sure it wiped out the cancer. I have been back to work part time for two weeks. I can related to getting wiped out by mid afternoon. Like you my beard is all coming back. Also, my neck hair is slowing coming back. My food intake has also improved, however the weight gain is not happening. of the 35 lbs I lost, I have gained 5 lbs. My strength like yours is getting better. It has been 3 and 1/2 months since my last radiation treatment. By the way I had my first glass of wine that I completely enjoyed.. Have you been able to drink a beer or have some wine?
Again I have alot of confidence in your clean results of the PET…..Glad you were able to make to France.
Toby
Hello Jacques, I’m responding to your question about an HPV test. For women it can be done as a part of the annual routine pap smear. For men, I’m not so sure how it can be tested. I have read online that cancer tumors in the tonsils have actually tested positive for HPV. See this article:
http://yourtotalhealth.ivillage.com/hpv-tied-better-tongue-tonsil-cancer-outcomes.html
I asked my surgeon about testing my tumor but he didn’t seem all that enthused about it. Maybe if I get tested as part of my annual checkup, then tell him I tested positive, he may agree to test the tumor. He thinks it doesn’t matter so much what caused the cancer, because the treatment would have been the same either way. But for me mentally, I sure would like to know.
Hi Heidi,
After your post of the relationship between HPV and throat cancers, i googled and found several articles that write about that link. I will ask my oncologist if it is possible to test me and see if that could have been a cause.
After studying 100 men and women newly diagnosed with oropharyngeal cancer, researchers found people with prior evidence of oral HPV were 32 times more likely to get throat cancer than those who do not have HPV That’s a quote from a fox news article. http://www.foxnews.com/story/0,2933,271092,00.html
Of course it won’t changed what has happened to us, or the treatment we received, but as you say, having an answer to the inexplicable is something that we all search for.
Good Morning,
In regards to HPV, I like you and Heidi was not a smoker and do drink wine, however not excessively. My tumor was tested for the HPV and was positive. Both my oncologist feel quite certain that HPV is the reason for my tonsil cancer. It’s been four months since my last radiation treatment. Tomorrow is my first trip on business to Washington DC. I’m nervous due to times of fatigue and the eating issues. I’m scheduled for a PET/CT scan December 17. While the previous PET in September was clean, it’s still a little nerve wrecking. Best of life to both Heidi and you Jacques.
Toby
Hi – I just wanted to let you know how helpful your blog entries are written. Hi Carl – I found your e-mail on a blogging site for cancer. My father recently began radiation and chemo treatment for tonsil cancer. He’ll be starting his third week on Monday. He has 7 weeks (m-f) of radiation with one week off in the middle of treatment along with one day of chemo every week.
Unfortunately, my dad is blind and is not adept to the Internet world to seek advice. However, I am printing your entries to read to him to share experiences about others facing similar circumstances. I live 8 hours from my family, but try to speak to them every other day. I am visiting next week and am excited to share your blog with him.
As of today, his throat is starting to get pretty sore. He has not lost all of his taste yet, but does not have much of an appetite. His salivary glands are pretty much shot, and his spit is pretty thick (needs a water bottle). A home nurse came in yesterday to show my mom how to work the feeding tube for future use very soon. The cancer was found after going to an ENT Dr for a lump on his neck. He’s only 68, and has alot to look forward to with three young grand kids.
Hi Kerry,
Thanks for your kind comments. It sounds like your Dad has an experience pretty similar to mine. Except for the additional challenge of his blindness and the added chemo effects, he is embarking on a not so pleasant journey. I don’t have much advice to offer except what i have already written. I don’t know what the future holds but for now i feel human again and have minor residual side effects like dry mouth which is still slowly improving. Don’t let him panic, which means make sure he stays well medicated with Xanax or Ativan (lorazepam). Cause when the going gets tougher it’s easy to freak out. The periods of vomiting are one such case where staying calm to minimize the throws up helped. So make sure the docs give him the serious pain killers in generous quantities, and anti nauseau drugs. Make sure he takes them as he feels he needs. My philosophy was give me the drugs now, i’ll worry about getting addicted or detoxing later on. Getting through the now is what he needs to focus on. By the way, i never got hooked on any of the drugs. When i felt better i just stopped taking them. The pain killers to have a habit of making you constipated, and when i was at my worst and couldn’t keep anything down, i went for pain killer patches and suppositories. Some pain killers can actually make you nauseous as well. I didn’t tolerate the morphine patches very well at all.
There will be a few days where he might throwing up all the time, so dehydration is something to watch out for. My best solution to the misery was to sleep as much as possible to pass the time. Hang in there. Get close to God. And he should keep reminding himself that there are some people a hell of lot worse off than him.
Keep in touch! I know he’ll get through it.