Contributed by Jim Nelson, consultant to CAIRE Inc. ~
Palliative: adjective (of a medicine or medical care) relieving pain without dealing with the cause of the condition.
Palliative Care – Care afforded to a patient of a chronic disease to offer comfort and an increased level of quality of life. This kind of care does not, is not meant to, cure the underlying disease. Given the circumstances that I have outlined to you in the past several weeks, I was rather in a palliative care situation from early this summer. We thought that the Mohs surgery would be the answer, as it has been in the past. Failing that, surely a month of daily radiation would take care of it. Not to be.
When your radiation oncologist walks into the examination room late in the course of treatment, takes one look at your face, and says, “I have never seen anything like that!” – it does little to Instill confidence. That was followed by a referral to another cancer center.
So, if you have been keeping up with my little journey, you know I recently met with the ear, nose, and throat surgeon. As we understood the possibilities, she could agree to perform as she put it, a “partial fascectomy” taking out as many of the tumors as she could and replacing them with skin grafts and plastic surgery. There would be more meetings with my radiologist and my medical oncologist, and that the three of them would come up with their recommendations.
I assured her that, as I had said earlier to Mary, “I am not done with me yet!”
Ultimately, she expressed a reluctance to cut on me, mainly because the loss of the facial nerves that run through the salivary gland would result in more loss of control over the right side of my lower lip. I already have difficulty in biting food without including part of my lip. Painful and irritating. Also, my dazzling smile is a bit crooked. I feel that my modeling career is in jeopardy … Ah, well.
The oncologist presented another radiation approach – a two-day regimen with a couple of treatments per day which would leave some time off between treatments and the possibility to fly to Tucson for a couple of weeks. We have kinda been trapped in Colorado for several months, due to the variety of treatments that I have gone through.
Since we truly have no idea what the future brings for us … (Does anyone?) …we are not sure what to do with the Tucson house. We love it, it is quiet and has magnificent views, but the question arises as to whether we keep it vacant, sell it, rent it, or just what. The townhouse in Colorado is nicely set up for us, given the day that one of us needs to settle in one place.
Well, just to put things in perspective, Mary just walked into the living room, said, “We are going to beat this thing’s butt!” and walked back out.
That is what I want in a caregiver! You know that the two of us have been preaching the value of a positive attitude to all of you for years! My mantra was always, “If I die tomorrow, I want to have lived my life so that I won’t regret anything that I have done, or anything that I haven’t done!” Very high-minded and perhaps a bit self-serving in that it gave me justification in my own mind if I wanted to do something.
As the years of our marriage passed, Mary gradually instilled the value of her positive attitude in me, as I was in turn instilling my “Don’t pass up an opportunity to do something if you can afford it and it won’t hurt anyone else” – attitude in her. Both approaches to life have served us well!
I recently completed my last chemo infusion. I can’t tell that they have done a lot of good, but then I have no idea what I would look like now if I had not had them. I have been basing part of my opinion on the fact that almost none of the predicted side effects has reared their heads. Amid predictions of nausea, bowel discomforts, loss of appetite, massive hair loss for my entire family, etc., I have noticed a thinning of the hair on my head. For those who have met me personally, you know that I started losing my hair at about age 35, so not a big deal. So, have the infusions worked? No idea. So, I will keep you posted.
For those of you who read these things just for the basement reports, we are PAINTING!!! Yay! Getting so close I can’t stand it!
Now, back to the quest to “kick this thing’s butt!”
The radiation oncologist has explained in great detail what’s next. Like everyone else, he is not saying anything about a cure. However, he feels that the radiation, used judiciously, can slow it down, delay it, or possibly reduce the size of some of the swellings. I am to have radiation treatment two days in a row, twice a day. I will go to the cancer center, get a treatment, and then wait for six hours to get the next one. After the two days, I will then have three weeks off to let the radiation do its job. If it appears that nothing is happening, we then have the flexibility to adjust the dosage, the area, or whatever else it is that they can adjust with their giant machine.
After my meeting with him, I was sent to the radiation lab, where they fit me with a mask, and did a quick CT scan of my head, to make sure that they were aiming at the right spots. The fitting of the mask is an interesting process. They positioned my head on the table so that I could not easily move, and then brought over a flat sheet of perforated plastic. It had fasteners around the outside of it, and it was quite warm. After asking me if I was ready, two of the technicians basically smash the thing down on my face and fastened the clips to the table. They then put cold washcloths on the mask, to cool it and solidify it. The process sounds much worse than it is, but it is not something that the claustrophobic would enjoy. The purpose of the thing is to hold your head totally still while they apply the radiation. The dosages can take from a few seconds to a few minutes, and they truly do not want your head moving around during that time.
I will be reunited with my mask, and we will start the process. I have high hopes that either the radiation and or the radiation plus another chemo drug that the medical oncologist wants to try will produce some results that we want.
I want to thank each and every one of you that have responded and or commented on my little adventure. I have received literally many hundreds of comments, good wishes, prayers, expressions of sympathy, and it is just a little bit overwhelming. I know that we have tried to help the other members of the lung disease community over the past years, but the kind of response I received truly shows me that we have touched a lot of lives. It is all very gratifying. Thanks from the bottom of my heart.
Love you all,
~ Uncle Jim
Jim Nelson is a double lung transplant recipient and a patient advocate for COPD patients throughout the U.S. and around the world. He and his wife, Mary, are well known patient advocates and brand ambassadors for those organizations who tirelessly endeavor to help those individuals who suffer from a variety of respiratory diseases and the caregivers who support them.
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