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Really Cool Mask

lyolan1
Posts: 95
Joined: Jul 2009

Who said getting cancer wasn't fun! So far I have recieved all these really bizzarre diagnostic tests where they stick this crazy hose up your nose and tell you to say heeeee... while they look around. Another test where they stick a bunch of needles in my neck, ouch that one hurt. Then I get a cool looking "Jack the Ripper" cut on my neck that looks like I walked off a Friday the 13th film set, talk about the looks, had fun with that for a couple of weeks. Today, I got this really cool mask that I will have to wear for 35 treatments where they shoot radiation into my neck and fry it, sounds like the fun is just beginning. Sorry, I know this is no laughing matter. Sometimes sarcasm helps me.
I am starting to understand the meaning of the emotional roller coaster. A couple of weeks ago, I really thought I was prepared to go through the treatment in a good state of mind. This past Monday has really put the magnitude of the fight in perspective. Sometimes when I write a post I start to feel very sorry and angry for myself. Why me, Not now, I'm not ready.... Sometimes more affraid than anything. My treatments start on 9/2, The day before my sons 16th birthday, and end on 10/22 if all goes well. If I am lucky, I will be feeling better by Thanksgiving. These radiation treatments remind me of the same intrepid feelings I had when I went sky diving. I really don't like heights all that much, or the thought of cancer treatments. I did not want to be the wet blanket in the group so I went any way. Once the plane takes off, you are not going to be landing with it. When you reach the right spot above the earth, at the right altitude, the instructor starts nudging you out the door. Afterall who wants to jump out of a perfectly functioning airplane. Once out the door I had to stand on the strut of the airplane's wing. Then, when the instructor says go!, you have to let go, and pray the chute opens. As with skydiving, the cancer instructors are nudging me out the door into treatment I really don't want, even though I feel fine(safe airplane). For me the pain of the treatments are too abstract to think about and do not scare me as nuch. It is the quality of life afterwards and not knowing what to expect that scares the hell out of me. Fortunately, everyone that has responded to my posts has been very encouraging and helpful. Thank You All. I have read other posts from other people who are not as fortunate as me, and makes me feel like a real cry baby. I am lucky, my cancer never spread from my tonsil or lymph nodes. I want to say good luck to everyone who is in treatment or about to start. Hopefully, the outcome will be positive for everyone. Alex.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Hey, Alex. I too had the cool mask and still have to say "Heeee" at regular intervals when I go back to see the docs and they stick that thing up my nose. I've got the second belly button, thanks to the PEG, and my neck looks like I came out on the losing end of a knife fight thanks to a modified radical neck dissection. And just think, for you the fun is only beginning.
But seriously: You said on another thread that you're an HPV-16 guy, right? So am I.
When my lead doctor at Johns Hopkins told me that, and then told me how much better my chances are because of it, it gave me a real emotional lift. I went into treatment with a positive attitude throughout, even when I was feeling pretty crappy, and I'm convinced that my attitude had a lot to do with how well I endured the treatment.
Everyone's experience is different, but I got through this a lot better than many who've shared their experiences here and on other boards. I literally can count on the fingers of one hand the number of painkilling pills I took during and after treatment. I'm 10 months out of treatment and my saliva has come back about 75 percent. Eight months ago, ketchup was too spicy for me, and a single grain of cracked black pepper would burn me up. Today I'm once again garnishing my salads with my homegrown habanero peppers (nuclear strength). Sure, some things don't taste the way they used to -- cognac, which I dearly loved, now tastes like cough syrup to me -- but hey, that's no big deal. Cognac's expensive anyway.
Emotionally and spiritually, this whole experience has made me a better person. The reality check that is cancer will really put things in perspective for you. I don't sweat the small stuff anymore.
Just keep telling yourself how lucky you are that you're HPV-positive. You'll get through this. Really.

--Jim in Delaware

lyolan1
Posts: 95
Joined: Jul 2009

Hey Jim, How's it going in Delaware? Im glad that things are going well for you today. After that last post, I have felt much better just getting out my frustrations. I forgot about the cisplatin. Today was a bad day. I'm ready to start. Did you work all the way through the treatments? 4 wks out of surgery and my shoulder is still pretty sore, Was Yours? When it is over, we will toast a glass of our favorites. Alex.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Alex:
No, my shoulder never hurt from the neck dissection. I'm not sure why I came out of it so well, but I'm not going to argue with the results. As a matter of fact, not too long after my surgery I was disappointed to find out that I could no longer hoist a 50-pound sack of corn onto my shoulders and carry it -- which was something I could easily do B.C. (Before Cancer).
So about two months ago I started working out with 8-pound dumbbells, just doing 20 repetitions of a couple of different exercises. I'm now up to 55 reps and about to move to 60, and my biceps are looking pretty buff for a 55-year-old geezer.
The only lasting effects I've had from the surgery is the scar tissue on the side of my neck, which has little to no feeling, and a slightly crooked smile that appears to be getting better.
Hey, it's good you got out your frustrations. Writing is a good way to vent.

--Jim in Delaware

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Alex:
No, I didn't have to work through my treatments at all. Thankfully, my employer offers very good disability insurance benefits. I was off from the time my tumor was removed around July 1, 2008, until mid-December 2008. That gave me time to recuperate from the radiation, which was a very difficult time.
I went back to work in December, but on Jan. 10 I had the modified radical neck dissection and was out for close to three weeks. I've been back at work and doing fine ever since.
--Jim in Delaware

casusco
Posts: 3
Joined: Sep 2009

I can relate to both of you so well. I'm 4 weeks post treatment (rad & chemo) for tongue cancer that had spread to my lymph nodes. I missed an entire summer with my daughters. And it's hard not to say "why Me" I had to take a xanax every day to get into that horrific mask...and even with that still had panic attacks. I find that now I am more of an emotional wreck than I was during my treatments. I know that I too am lucky in many ways. But I am so scared this will come back - then what???

lyolan1
Posts: 95
Joined: Jul 2009

Hi Casusco, Great to hear from you. I wrote that a while back. I was really angry about all the B.S around the appointments, the waiting, the missed time from work and family, and my golf game! I *****ed and moaned to the docs about the brutal treatment regimen. I really did not want to lose my saliva glands. I did my first Erbitux Friday, the day after my PEG tube placement, and my first rad today. Now that the docs gave in to me, Erbitux and 33 rads, I am also second guessing myself. What if it comes back because I wanted a lower dose on my right side? I have been thinking about my follow up treatment as well. Even though it is a long way off, I will be a wreck leading up to it. We picked a strategy, lets hope it is the right one. What was the last 2 weeks of radiation like? Alex.

jkinobay's picture
jkinobay
Posts: 245
Joined: May 2007

Put down those half-empty glasses right now.......... and back away!! You are too innocent to be handling such dangerous weapons.

Sure, this crap can come back. Absolutely, we all worry about that. Sure, the treatments are harsh. Sure, recovery will absolutely never be as fast or as thourough as you like.

BUT, here's two of JK's "POINTS TO PONDER":

1) DO YOU HAVE FAITH IN YOUR TEAM? (i.e. ENT, Oncol, Technicians, labs, etc.)? If so, do you trust the strategy they put together for you? If so, THAT'S A WRAP..........follow through on what they told you to the letter. Go the extra mile. Take an extra Xanaax or your choice of med, .............whatever it takes. BUT GIT UR DUN!! Trust me, you will fare well because the alternative is to bid farewell. If, on the other hand, you DO NOT have absolute faith in your Team, bring this to a halt immediately and until you have the Team you do trust. My guess (hope actually) is that you have faith in the current strategy/Team or we wouldn't be having this conversation.

2) WHAT ARE THE ODDS?? Have you looked at 5 year survival rates for our Cancer? In this day and time they are very, very good and getting better. Please name any other Cancer for which even a few Healthcare Professionals are actually advocating that current treatment protocols are excessive. Not another one that I know of. As my Team told me...."if you have to have Cancer, this is the one to have....best known, best response to treatment, very high survival rate". That, my friends, is a glass more than half full!!

You will do well. You will get well. You will stay well. Get yourself to a mirror AT LEAST ONCE A DAY.........and repeat that Mantra to the guy looking back at you. Introduce yourself to him/her...........explain that there is a new sherrif in town.

Tired of the metaphors??.............Don't get me started. I have lots more.

GIT UR DUN....................JK

PS: JK has left the building and returned to his non-cellestial self. As you were!!

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey there,

My husband has stage 4 tonsil cancer and is three weeks into treatment. He too is HPV-16. He will have 35rad and three chemo. He has already had one chemo treatment. We already have the PEG and have not used it. So far so good. He actually has played golf a couple of times this week. I know it will get worse but he is trying really hard to keep things normal. The mask is really funny looking but he doesn't mind it. He refers to his PEG as a garden hose because it's so long. We try to laugh a lot about some of it, because it makes us feel better. Sure beats crying all the time. Good luck to you Alex, I know you will be fine.
Our Son leaves for College Saturday, so I know where you are at. It's hard on the kids but we just keep telling them it will be okay. I hope you and my husband are both feeling better by Thanksgiving.

Donna

lyolan1
Posts: 95
Joined: Jul 2009

Hi Carolina Girl, It was nice to hear from you. Today was a bad day, but it felt good to let out a little frustration. It was one way for me to get in the right frame of mind. I have resigned myself to the treatment regimen that the doc's are going to recommend. The dr. that I had for surgery said that I too was stage 4 cancer because I had 2 lymph nodes affected. However, since it is HPV related, it is much better than stage 4, and the odds of a complete recovery are very good. I am going to play golf sunday for the first time since my surgery. I hope to make it past the 3 week mark in good shape. Is your husband still working? Was his shoulder sore after the neck dissection? I'm 4wks out and mine is quite sore. Where is your son going to college? I have a son 15 and a daughter 13. Before I know it they will both be in college. Let's keep finding ways to laugh at this barbaric treatment regimen. good luck. Alex.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey there Alex,

My husband did not have surgery. They said they felt they could get it all without surgery. We are in our 4th week of radiation and things are OK. My husband is still working. But probably not after this week, mostly because he is in sales and very hoarse. He is still eating and drinking fine just can't talk to well. My son just started the College of Charleston. He is so excited and I am sad he is out of the house. My daughter is 13 so at least I have her around the house for a few more years. You will do fine! Soon it will all be over. Also, as a side note, the DR's are VERY pleased at how well the tumor is responding to the treatment. It has shrunk a lot so at least it is working. Keep the chin up.
Donna

lyolan1
Posts: 95
Joined: Jul 2009

Hi Donna, Thanks for getting back to me. Before I submitted to the radiation and the "jungle juice" I needed to get the treatment regimen rationalized. As is the case with your husband, some people do not get surgery, others do, like me. My beef was that my cancer was contained and removed, hence cancer free for the moment. therefore, why am I subjected to the same rads as your husband when we are talking about cancer on the microscopic scale, not tumor scale. Im trying to save my saliva glands. My question to the oncologist was, why not do more chemo and less radistion. Answer, do I want to be the first to try it? The Dr. thinks I will retain some saliva because of reduced rads on my right side. Cancer is tricky, it grows exponentially, wants to live, if it comes back I will have to start over. No Dice. the Dr.'s are giving in with the erbitux because it has little adverse side affects and does not mess up the body as much as cisplatin, with the same cure rate. I played golf for the first time since my surgery. My shoulder was killing me from the neck dissection. I played pretty good, shot an 84 at a tough course. My treatments start 9/2. I am also in sales and need to work as long as possible. I hope I can make it to week 4 in good shape. Let me know how things are going. Good Luck to you both. Alex.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Alex,

I think you should be okay into week four. My husband is actually doing pretty good. He is hoarse but that was not from the radiation. They had given him Morpine for the pain(throat) and it made it very sick. So all the vomiting made him hoarse, otherwise I think he would still be able to talk pretty good. He is starting to get his voice back. The radiation has not been too bad, the cisplatin was horrible but he did recover and played golf since then. He shot even par that day. You have a good attitude and that helps. You should ask questions! We did. The only thing I can tell you is that we did have the PEG tube installed before treatment started and even though he hates it, he has used it a lot. He has no appetite, so without it he would be very weak. He does the feedings (which are really easy) and then can just eat for enjoyment not really for nutrition. So far he has only lost 10lbs. I can tell you that I really thought it would be worse that it is but we are getting through it okay and you will too. At least when the treatment starts you can start marking off the days on the calendar. To me the waiting was the hardest part. I will keep you updated on our progress so you can have some idea of what to expect, even though I know everyone responds differently.
Peace be with you!
Donna

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