Hi I'm Blaine

I've been at this cancer journey for more than three years now. But, just recently, my doctors have discovered more of the cancer. They are assuming that it is not a recurrence, but cells that they failed to get during my original resection.

I was diagnosed with polymorphous low grade adenocarcinoma of the right maxilla in March '03. The resection removed my entire right sinus to include all of my soft palate and about 75% of my hard palate. Needless to say, like most of you all, I've been through much. Now, after 13 surgeries (only a few of which were for reconstruction) I now have to deal with this all over again.

I am facing 5 weeks of neutron beam radiation to rid me of the remaining cells. One of the tumors is very close to my carotid artery. The other is in my masseter muscle.

Has anyone undergone this type, or any type, of radiation. I would be happy to hear your story. Especially how you felt during the treatments. I will have to do this in Seattle. This is about 2500 miles from where I live in Georgia. So, I have to do it alone. Can I do it? Will I be so weak or sick that I will need support?

Any advice will help.

Blaine

Dear Blaine,

I'm very sorry that you are back in the fight so soon after having had far more than your share of "stuff" to deal with already.

I was caregiver last year for my husband who underwent a combination of both chemo and radiation for squamous cell carcinoma at the base of the tongue (with metastasis to the right neck nodes). He's now in remission. My husband's cancer and experience is different from yours, so I really want to address only the very last part of your posted message.

Actually, it's more of a question... Is there someone who could be with you in Seattle as a support during radiation treatment? If not, I suppose the rest of this message will be mute points. When my husband went through radiation, my presense was indeed a big help to him, both in terms of assisting when he was weak and feeling ill (with administering meds, etc.) and also emotionally. While I do think he could have endured the experience without me, it would surely have been difficult (and, on some days, very much so). Let's bear in mind, however, that my husband was also receiving chemo throughout his seven-week radiotherapy period (52 radiation treatments all totalled). The combination may have made him more needy of my help and support than if he just had the radiation only. (I really don't know for sure.) There were many days that I didn't know how much of his weakness and illness was caused more by the radiation or the chemo.

I suppose, if only for the emotional-level support, it is wonderful to have someone share the challenging experience and be by your side each day. I only hope there is someone in your life who would be available and willing to assist (considering the many miles between home and therapy, and all the other factors, including expense and logistics).

Radiation is known to be an energy-zapper with more than a few possible side effects (which I trust your doctor has gone over.) I know with many other folks going through radiation at the same time as my husband, it seemed that quite a few were transported to/from appointments by a friend or family member. (I drove my husband every time and doubt that he could have safely operated a vehicle after the second or third week.) Quite often certain medications that cancer patients take also make driving difficult or not recommended.

Where will you be staying in Seattle while receiving radiation? If accommodations are closeby the facility where you'll be having treatments, is there perhaps a shuttle service that you could use?

I'd say, if someone is able and willing to go with you, by all means don't do it alone. Not that I don't think you could endure the experience by yourself... rather it is just always best to have help from someone who cares whether you physically need assistance or not... just in case. In my view, the emotional support is also equally important.

Please know that I feel for you in a big way. My thoughts and prayers will remain with you throughout the weeks and months upcoming as the cancer disappears one cell at a time until you are free of it. Stay strong and focused. Definitely rely on help if it is there, whenever it is offered. And rely on this message board too and share your experience, fears and triumphs. There are lots and lots of people connected via the WWW (and, most importantly, spirit-to-spirit) who are pulling for you and care deeply about the ordeal you are facing... people who truly know the invasiveness and challenges of cancer.

Wishing you the best outcome possible!

From my heart,

Melanie

Thanks Melanie,

Actually, I will only be alone for the first half of the treatment. The second half, my mother in law will fly out to assist. Let me explain, my mother in law is coming instead of my wife because my wife is in her third trimester and cannot fly. So, it's me and Betty. We have a good relationship and she is a wonderful and caring person. Next to my wife, there is no one I would rather have with me.

Most of all, I'm afraid. After 13 surgeries to date, I've been through unimaginable pain. When I first started this venture, I could handle a gun shot wound with only a stick to bite on. Now, after suffering so much, I'm terrified of pain. And, at the first hint of it, I go running for the meds.

I pray that your husband stays in remission. Thank you for writing. Please let's keep each other informed. This is a wonderful tool to share one's thoughts and concerns.

Blaine

Oh praise God for Betty!

I am so relieved to know you will have someone with you, especially during the second half of the treatment period.

What date do your treatments begin?

Blaine, of course you are afraid of pain... It's unreal what you've endured already. In the difficult days ahead, I am quite sure that the beautiful thoughts of your unborn little one will sustain you the way nothing else can. Is it your first child? I'm sure the fact that your wife is expecting a baby right now is actually bittersweet under the circumstances. While I know you wish more than anything in the world that you were okay and could be disease-/worry-free at this precious time, try very hard to allow the new life that God has created to just completely consume your being, especially during bouts of physical (and emotional) pain.

Now, speaking of pain...
When my husband had radiation, physical pain must have been completely controlled because he did not experience it to any significant degree at all. (His problems were more related to extreme weakness, occasional nausea, and toxicity from the chemo... rather than pain.) He wore the Duregesis pain patches, which apparently did the job. In fact, we never really knew how much pain (if any) he would have had without the patches... simply because pain was never an issue the entire time. I know that every person's case is different... but I sincerely hope your experience with radiation will be like my husband's. Granted he did have radiation burn over the areas treated, which perhaps looked worse than it felt. Rather than pain, he felt the pulling and tightness of the burn and breakdown of the skin. Beyond that, I would say the biggest issue my husband had was not being able to swallow at all for eleven months and relying on a gastric feeding tube for nutrition and liquids. (The main reason he couldn't swallow was due to an esophageal stricture caused by the radiation, which has since been opened to allow oral intake of food and drink without aspiration.) Now he is tube-free and eats just about everything (except for dry or breaded foods). He does have severe dry mouth (which is probably permanent), but is just grateful to be in remission and eating again.

Yes, do keep me informed about how you're doing. (Let me know when radiation is to begin.) Please tell your mother in law that she is more than welcome to contact me (and others) on this message site too (particularly as she takes care of you during treatment). (Hopefully the oncology facility in Seattle will have a public-access computer). Ask me any questions you like. Comparing notes and experiences is so helpful.

We will be in touch. You are not alone!

From my heart,

Melanie