Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
CAREGIVERS – TRADING PLACES by Gerry Rice
Is there a formal definition for being a caregiver? If there is, I imagine my husband, Del, and I are at opposite ends of that definition. And yet, we both know we are in each other’s corner 100%. It’s never been an issue even though we are so different. I’m an extrovert, independent. Del is an introvert, dependent. We are both optimistic and resilient.
We were married in 1961. He was 28, I was 22. He was an engineer and I was a number cruncher. It didn’t take long to discover that Del was more than a guy with sex appeal and I was more than a gal with a great butt and never ending legs.
At a young age, I developed a neuromuscular disease which started out as a tremor in my right arm. At 23, I developed blephorospasm (constant involuntary eye blinking). At 25, I developed migraines. I was 28 when my spine began to spasm. Del never considered me handicapped so neither did I.
We raised two children. We camped, boated, ballroom and square danced, dirt biked and skied. Del coached the kids’ soccer, baseball/softball and football teams.
He often teased me about my having the ability to pour several cups of coffee at once. We maintained a sense of humor and were not above laughing at the absurdity of my illness. I have a brittle and prickly personality and living with me takes a very special man. He put up with comments from macho men friends about marrying someone “normal”. He is fiercely loyal and being a caregiver comes naturally to him.
I required learning about it. In 1971, Del broke his back in 3 places. He was paralyzed for several days, was depressed and needed positive reinforcement. After six months he regained his mobility and strength. It was my turn to get some nasty comments from co-workers about my sex life with a sick husband. Stress and anxiety can come from the strangest places.
Being a caregiver during illnesses requires unique handling for each situation. Giving and receiving TLC from each other is never ending. Del is the better caregiver. I have been known to call it hovering. I, as a caregiver, have little patience and get really grouchy. I think it is because I will not admit to Del’s illnesses. I’m a realist but not with him. We both strive to keep a positive attitude: a little depression, a little feeling sorry for ourselves and then back up and at’em.
In 1978 we moved to Richland, Washington from Placentia, California. We experienced the normal ups and downs. Our children grew to be mature responsible adults and began their own families. And, then, Del’s face was white as a sheet when he found blood in his urine. He was diagnosed with bladder cancer and had surgery in 1987. He was so cool with the diagnosis and surgery; I barely knew what was happening. He kept it from being more than a blip in our life.
In 1990, he quit smoking. He announced one day he would probably be in a crabby mood for awhile. He never had another cigarette even though I stupidly kept smoking. Was I a responsible caregiver during that time? No! Did I care? Oh, Yes!
In 1991, illness again hit Del. He had a heart attack which led to a triple heart by-pass. Richland is a small community so surgery was performed in Spokane. The day after I got him home he insisted we go to our favorite winery for his favorite wine. He was back and I was learning to cook in a heart healthy way. Well, sort of.
Del called me in 1994 saying he was having trouble focusing. I took him to our family doctor with many specialty doctors visits to follow. After several months of tests the diagnosis was Multiple Sclerosis. We experienced shock and disbelief. Weekly injections to slow down progression of this ugly disease began. Because of my permanent arm tremor, I could not administer the injections but became expert at preparing them and telling Del to “take that needle and shove it”. He “gets” my sense of humor. I was a wealth of encouragement. The MS did go into remission and life got back to normal. Normal was changing though.
Retirement, golf, grandkids, golf, condo living, golf, socializing, golf, all was enjoyable and satisfying.
Through the years I had seen several neurologists regarding my arm tremor and eye spasm, but had done nothing for years. My tremor worsened so I learned to write with my left hand. The tremor moved to my neck. Del always went shopping with me so I wouldn’t have to write the check. In 1996, I saw yet another neurologist and after several tests was told I had, Early Onset Generalized Dystonia. My gosh! There is a name for it! Unfortunately there was no cure. Several very strong medications were tried with no success and a lot of drastic side effects. Del, my calm, cool caregiver put up with many weird mood swings and reactions but many times wanted to give me an upper cut.
In 1998 I learned of a fairly new surgery performed to stop the eye spasm so off we went. This husband of mine has put so many hours in a waiting room, he could qualify for that as a full time job. Patience is definitely his virtue. After surgery, I could for the first time since I was 23, keep my eyes open. What a joy for both of us. We had for so many years shared the fear that I would miss seeing the kids get into trouble or some such thing.
Relying more and more on each other became the norm, which in itself is normal. Three back surgeries from 1997 to 2001 put me in bed the better part of those years. Del was so attentive; he never made me feel that I was a burden. He golfed every morning and came home to take care of me and business. After each back surgery I got physical therapy only to have my deteriorating back renew its attack. The Dystonia was in my spine. In January, 2001, it was back to Spokane for anterior/posterior back fusion. Del could make that trip in his sleep. By September, 2001, I was feeling better than I had in years. And then………….
A sore throat was developing. It continued throughout the winter and by March 2002, I could barely carry on a conversation without great pain. My ENT gave me the bad news and thus started the most difficult period in our lives. The big C. Chemo, radiation, hospitalization with a near death experience. A stroke in my cerebellum while hospitalized. Learning to balance and walk again. Having our days dictated by the tube feeding schedule (I could not use the g-tube myself because of my tremor so Del had to feed me). Another round of chemo and radiation, only to be hospitalized again with neutropedia and then the decision to have a laryngectomy. Oh, how we agonized over that decision. How could I have possibly survived without Del, his strength, love, assurance and steadfastness? I was able to lean on him and he never let me down.
Over to Seattle for surgery. Our kids came. David took Del to Hooters and was a caregiver to him. Dianna held my hand. Del kept assuring me I was still me even though my head and neck was swollen to the point of resembling a basketball. I survived surgery and found WebWhispers 6 months after becoming a laryngectomee. But, that’s another story and, first, I’ll continue this one.
In February, 2004, Del had an acute MS breakthrough. It happened between going to Arizona to visit his bro and my trip to Cabo San Lucas, Mexico to visit a friend, my first outing by myself in years. Del understood my need to become independent again and encouraged me to go even though he felt very ill. He never let me know, but the relief written all over his face when I deplaned said it all.
At first he had massive steroid injections. They helped but we noticed his eyesight, mental ability, spine, balance, and physical strength waning. Omigosh, did I have the where-with-all to deal with his disabilities as he had mine? Would he have the strength to “keep on trucking” one more time? These and more questions naturally came up. The quantity and variety of medications became mind boggling with side effects unbearable and fickle. Would I be effective in encouraging him to stay active and yet also ease his burdens? So far so good. Recently he told me he feels much better when he is active.
We moved from our beloved condo. In looking at the options we decided that with Del’s health rapidly declining we had better bail and we are now in a wheelchair accessible apartment. It’s very cozy and surprisingly liberating. I bought Del a cane on a whim. He has found it helps a great deal and is very comfortable with it. It’s the little things that help.
Obviously, we’ve been trading the caregiver responsibilities back and forth. Del is still the better caregiver. We constantly encourage each other to strive to be more than the sum of the illnesses we have had or are currently experiencing.
After all this time we each know the others strengths and weaknesses and how to work those to best advantage for both of us. Have we been preparing for this level of illness and support since 1961? Nah, we’re making the best of bad situations, one at a time, just like everyone else.
Paramedics, ER, and Electrolytes by Pat Sanders
I think everyone has times when they can’t name the problem but they just don’t feel good. I know I do. Sometimes my energy is low, blood pressure is low, temp is low and these are not things you call the doctor about. I had some shakiness in the muscles and cramping in some others. When my little complaints became more numerous, I started to make notes because I had my yearly checkup coming up in a few weeks and I planned to go through the list of these aggravations with my doc. I didn’t make it there until I had experienced a very scary time.
I had to be taken to the hospital one morning via ambulance after the paramedics came. They were very kind, caring, and efficient. They did everything the way they were supposed to for a laryngectomee, including getting the oxygen up to the neck with a small collar. Took my blood pressure, pulse and temp while I sat on the side of the bed and didn’t move anything. If I tried to talk or even blinked my eyes, waves of nausea rolled over me. I was never so sick in my life retching with vertigo and nausea and every muscle in my body was trembling. They called the ambulance and saw me off to the ER where the ER doc did an EKG, hooked me up to a heart monitor (good strong heart), took blood for tests, BP, and I don’t remember what else. I had to have a brain scan because a tumor can cause some of these same symptoms (no tumors) and got me started on some potent anti-nausea med before the blood test results came back and they told me that I was extremely low on calcium, magnesium, and potassium which they blamed on the diuretic (Dyazide). I had actually been taking it for years and had not had a problem or didn’t know I did but it had started to cause the loss of minerals and electrolytes. Apparently this is a very common problem with taking diuretics. I had probably lessened the amount of calcium and magnesium that I was taking in with my diet and had been neglecting to take my vitamin and mineral supplements for some time. They also said they want to check me into the hospital to take some more tests, one of which was to see if the parathyroid was working which is another thing that can cause this problem. (Took a few days to get that test back but it was working fine.)
They took me off of the heart monitor and checked me into the hospital. My heart was fine and BP stayed at excellent levels. All night in the hospital they alternated with potassium and calcium both orally and through the IV where I was getting more calcium and magnesium. They were very good about giving me chewable, liquid or crushed medications. I got to come home that next afternoon after only one night in the hospital but was pretty washed out and not only glad to be home, but glad to be alive!
I am adding more fruits and juices to my regular diet for the extra potassium in addition to all of the vegetables I eat. We usually get enough potassium from a basic diet if we don’t have something removing it. I am now drinking lots of skim milk plus my usual yogurt and other calcium sources. I am taking extra calcium and magnesium chewables and good all around vitamins. I take some others like B Complex, C and D. That was some scary stuff and I will be more careful in the future.
I told the doctors that I was in a large on-line group of laryngectomees and I had seen this electrolyte problem with low calcium and low potassium written about before but had not paid a lot of attention, thinking that they probably had other illnesses that caused it. I didn't know I was sick! I just knew I didn’t feel right and the symptoms were all hard to describe.
I still have some slight trembling in the muscles and all the calcium I took didn’t seem to be enough until I added magnesium and that helped, either on its own or it helped the calcium to work. It just happened that this was just a few weeks before my doc’s appointment for my yearly check. The previous year all my numbers were fine and, if I had made it a little further, he would have caught the problem as soon as he looked at the blood results. Another thing this does is to make your thinking a little fuzzy and maybe I should have gone in early.
Low calcium levels are most often caused by not taking enough calcium into your body and/or calcium loss from your body but sometimes the problem is regulation of the calcium by the body. There are other things to check and other illnesses that can cause this. Depletion of body fluids from diarrhea and vomiting or dehydration can be part of the problem. If any of us who have had head and neck surgery have low calcium levels, they need to check the parathyroid. This is even more likely for those who had thyroid cancer or whose cancer spread to the thyroid.
So take your vitamins and minerals, drink lots of fluids, get your blood panels done, at least once a year, and if you start to have some weird symptoms, check with your doctor.
For cancer information call 800.ACS.2345 or visit our Web site at www.cancer.org
American Cancer Society in Birmingham: firstname.lastname@example.org
WEBWHISPERS - INTERNET SUPPORT GROUP FOR LARYNGECTOMEES http://webwhispers.org is a site with helpful information on what to do before and after a laryngectomy. It includes educational sections on larynx cancer as well as a complete Library of Information, lists of Suppliers, a monthly newsletter, and Humor. Laryngectomees, caregivers, and professionals can meet on two different e-mail lists to exchange messages, ideas and support In addition, there is a forum with message boards for social interaction. This is the largest internet support group for laryngectomees and is a member club of the IAL
LISTSERV FOR LARYNX CANCER A listserv with exchange of e-mails relating to larynx cancer. http://listserv.acor.org/archives/larynx-c.html to join or leave the list
A Laryngectomee site from the United Kingdom http://www.laryngectomees.inuk.com presents information from all over the world and HeadLines newsletter is carried on their site under Letters from America. They have all HeadLines since 1997
The Official site of the International Association of Laryngectomees