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Archive for February, 2011

Those of us with chronic pain difficulties have a tendency to be pretty self-centered. It’s natural and understandable. But there comes a time when we MUST put that tendency aside and focus on others around us. When our family members or friends are in crisis, our pain, our disease must take second or even third place in our priorities. We have to set aside and ignore our own discomfort and the stiffness and swelling that are going on in our life in order to support our family members or friends.

My disease will always be with me in one way or another. But now, it’s NOT about me! My oldest son has just been diagnosed with cancer. A bad cancer (as if any cancer is “good”). So it IS about him! We will be fighting for him over the next several months to years. Any personal problems are of secondary importance compared to his needs.

As we batten down our own hatches and prepare for the storm around him, we are each, in our own ways, assessing our own problems and determining how to set them aside for the duration. Teens and preteens in the family will be doing )some faster growing up. (A number of the grownups may be doing some needed growing up, too – I hope!).

Chemo, radiation, Interleukin II, Autologous immune vaccines, Interferon – these will become our new vocabulary. Trips to offices, infusion centers, hospitals will accord possibilities to visit and talk with each other. With his wife needing to work full-time, we other family members will have to pony up to the bar and help provide driver servicesĀ  – for the long-term.

Taking part in fundraising, helping to find clinical trials for him, helping to keep his spirits up – these have to become our priorities.

No matter how much we are hurting, he is hurting more. No matter how upset we are, he is more upset. No matter how worried we are about finances, he is more worried. As a doctor friend said to me,

“He needs treatment NOW. Go for it. Worry about paying for it later. Treatment now, bankruptcy later – if necessary.”

His cancer, while among the worst possible cancers, does have a 60% 5-year survival rate with aggressive treatment with some of the newer clinical trial drugs. We need to seek them out and get him into them – no matter the sacrifices involved.

Nothing like a crisis to get your priorities straight!

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One of the things a mother learns is that her children are remarkable. As time goes on, she realizes that her children are more than remarkable – they are capable of deep, really deep thought. For instance, my son Jay (James) is undergoing surgery forĀ  cancer of the parotid gland today. On his Facebook page, he posted a profound message – his thoughts before undergoing the surgery. I’m reposting it here (misspellings and all) without his knowledge, much less his permission, but I think he’ll be OK with it.

How to make a face with out moving a muscle-The day before surgery

by Jay on Sunday, February 20, 2011 at 3:07pm

Hello to my Friends, Family, and Loves,

It is Sunday Feb 20th, 2011. I sit here at the computer watching the very last scene of “Pirate of the Caribbean At Worlds End”. I am not sure that I am or will ever be fully ready for what is to happen tomorrow.

Tomorrow, at 0800hr I am to undergo a Perotidectomy, on the left of my face, with full sacrifice of the main nerve bundle that enters the Perotid Gland and the five facial nerve branches that come out of the Perotid Gland. (The Perotid Gland is one of the Salivary Glands that is located just inside the back of the jaw line under the ear)

After the removal of the encapsulated Tumor, I will immediately undergo a nerve graft to try and reattach the severed nerves that control the left eye closure and left side of the mouth closure. I will have a sling suspension that will over correct the eye corner and the mouth corner, on the left side, to help with the closure of both. I will also have a small gold weight put in my eyelid to help with the closure of my eye.

I will be on the operating table anywhere from 6 to 10 hours, depending on the complexities of the nerve graft. It can take upwards of 2 years to determine if the nerve graft worked fully. I have 1/3 chance of a good result (meaning that I can close my eye and mouth and have most of the control of those muscles) , there is a 1/3 chance of a fair result (meaning that the possibility of syncopation of the eye and mouth moving at the same time when I try to move them, or very weak movement of those muscles), and finally a 1/3 chance of a poor/failure result (meaning that nothing works and I have no control of my face on the left side).

I am optimistic that all will go very well and I will be able to move my eye lid and mouth. But I HAVE to be very realistic and understand that I could have one of the other results. I am fearful and worried but hopeful at the same time.

I had thought that I was not a vain person…however with all that is happening, I have found that I am worried that people will treat me in a fearful, shunning, and push away manner.

I cried for one day to get over the fact that I was going to lose my looks (homely as I am). It really is a kill joy when one thinks of oneself as a somewhat handsome faced person and now have to become use to a new face that is not the same or as nice as before. I have found that I am vain and I am upset that I am so shallow, that I put so much stock in my looks and think that I am so attractive that I am going to lose friends over this… and it hits me that I am now acting as though my friends are shallow and only view me because of my looks, for that I apologize and humbly ask forgiveness.

My best friend in the whole world, y’all know her as my wife Sheryl, MW, friend, and tower of amazing patients and love. She told me to expect her to react in an alarmed manner, and I asked that it be my shoulder that she cry on and know that I love her and care for her and that all will be ok.

One of our dearest friends, Mikey aka KyngLlama, asked me what reaction he should have for me? 1: point at me and laugh or 2: treat me with kids gloves. I told him that he IS to point his finger at me fall on the floor and laugh until his ribs hurt. He said “oh good, ’cause the kids glove version was the same anyway”. It is nice to know that no matter what, I am loved and maybe even respected a little by our friends and family.

I still need to pack my bag for a possible three day stay at the hospital… super hero jammies and soft t-shirts and socks. Easy list to complete.

I look forward to those who come to visit me at the hospital and at home, after the surgery. Please do not be alarmed at my appearance, my smile will be very lopsided, but know that I am genuinely glad to see you and appreciate the effort you made to stop by for a moment. For those who can not make it in person, know that I am glad and grateful for your thoughts, prayers, and well wishes.

I go into this with high hopes but realistic thoughts.

God Bless and Keep each and everyone of you.

I wish I could be with him at the hospital, but my right knee “blew up” and I’m not safe to drive the 25 miles to the hospital. So, I shall simply pray from here and request the prayers of others. I am saying the Akathist to the Mother of God, Healer of Cancer. (You will have to scroll down a bit.)

Even if you don’t see this post until later, please pray anyway. Our God is not constrained by time nor place, so prayers tomorrow – or even next year – will be effective today!

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USA Today Weekend edition for 1/09/2011, has an article that alleges “a few lifestyle changes can slow, or stop joint damage.” I don’t know where to begin! I suppose analyzing their allegations is one place to start:

“20 minutes of cardio exercise a day.” If I even TRIED to do that much cardio, or work up to it, I’d end up in the ER screaming for a prednisone injection and some pain meds. I’ve tried that before. All I end up with is a flare – flares indicate ongoing inflammation. Ongoing inflammation = bone destruction in the joints. I got a DVD for “Chair Aerobics.” It works somewhat, but I have to be really careful how long I do it. I did it for 5 minutes one day, and flared for the next 3 days. OK. Cut it back to 3 minutes. Just how much good is that going to do me??? Building up? I flare and I’m back at the beginning all over again. And again. And again. And ad nauseum.

“Cut Calories.” Sure. I HAVE cut my calories, but without the ability to exercise, my weight stays about the same. I would have to cut my calories below 800/day in order to lose some weight at this point. And that will only reduce what little muscle mass I have left. It won’t remove the fat. Oh yeah, in the same paragraph they talk about adding fish oil. Anyone ever read the package info and look at the calorie content of those fish oil pills? And you should take HOW many?

Try tai chi.” I’d LOVE to. OK, where is the nearest Tai Chi instructor? 35 miles – each way. Long drive for me. Do the drive, do the Tai Chi, drive home. Collapse. Be in agony for the next 3 days. I got a DVD for chair Tai Chi. I can last about 3 minutes before my shoulders and neck start screaming at me.

Reconnect with your spouse.” Reconnect? I am already connected to the sweetest, most helpful man in the world! We talk about everything – absolutely everything. He helps me with everything except pottying (he just can’t do it). So far, I haven’t needed that, but if I do, we’ll work it out together. He helps me dress and undress, in and out of my chair, in and out of the bathtub/shower, washes my hair, washes my body, rinses me, dries me off. Cooks for me, talks to me, gets my favorite movies for me on Netflix. Sleeps next to me, helps me up as needed. Holds me during the worst pain moments. Tells me he loves me. And I know he does. As he knows I love him. If a good relationship with my spouse would cure or even lessen my disease, I’d be in spiffy shape now!

No, I have RA because my mother had RA and my father’s sister had RA, and my mother’s mother had a form of gouty arthritis that was probably inflammatory – never diagnosed – she just gritted her teeth as her feet deteriorated. It was in my genes. I might have avoided the full blown RA if I had not had a major case of infectious mononucleosis in college. Still might have escaped part of it if I had not had the stressed out year and a half from hell when my XH left me and the children, declared bankruptcy forcing us to leave our home, move 2 times in a 5 month period of time. STILL might have escaped it had my mother not died when she did. Then, (my new husband and) I moved again – for the 3rd time in 18 months. That sustained crisis stress, and the ongoing stress involved with dealing with bereft children and an uncooperative XH took it’s toll. The following year I began to have problems walking due to foot pain. For 30 years I was misdiagnosed and kept on NSAIDS of one type or another until my stomach lining was so thin I couldn’t take them anymore.

My husband and I have had a wonderful relationship for over 30 years, now. So we don’t need counseling, and we don’t need to “reconnect.”

Get it straight, people! Autoimmune diseases are genetic. Any number of things, including infections and stress can trigger it off. Some cardio, Tai Chi, weight loss and “reconnecting” with my spouse won’t help.

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