The past week has been chock full of events, ups and downs, that relate to my life with chronic illness. So, I thought that writing about it would be a good next step for my blog.
For those who have followed my blog, they know where I am coming from in my battle to survive chronic pain, fatigue and other symptoms. For those who haven’t, let me put things into my own personal perspective.
***For most of my life I have been able to work very hard and have been able to put most illnesses, pains and other such nuisances aside.***
I learned as a young adult to live with chronic low back pain and to almost eliminate its negative impact on my life. However, about six and one half years ago it all changed.
That’s when I was diagnosed with melanoma, which progressed to Stage IV cancer by the next year.
***While I am a cancer survivor (no present evidence of disease), the effects of the cancer have changed my life forever.***
The cancer triggered what is known as a paraneoplastic neurological syndrome. Basically this disorder is the body’s autoimmune system gone haywire. It first manifested itself as a frightening illness that was diagnosed as transverse myelitis – an inflammation of the spine. It left me very weak on my left side – a weakness that continues to this day. After working hard in rehab, I thought I had finally beaten the problem the next summer when I enjoyed a great family vacation. I still had to use a cane at times, but I was feeling almost normal again.
Then, after a series of adverse health events including a blocked cardiac artery requiring stents, plus a frightening episode with pulmonary emboli and a case of pneumonia; my world came crashing back down again. This time I would not recover.
***I was hospitalized for 30 days in October and November 2010. From that point forward, I would suffer from continuous dizziness, never-ending pain and overwhelming fatigue.***
I share pretty much the same symptomology as those who have fibromyalgia, chronic fatigue syndrome and chronic pain syndrome simultaneously.
***The treatment has consisted of attempts to limit my immune system’s ability to fight my own body.***
For almost three years, I took Cytoxan, a very potent chemotherapy drug. This treatment kept me relatively stable until about a year ago when I began to experience new symptoms including a progressive cardiac neuropathy that required a pacemaker implant. When I went to Mayo, the doctors there strongly advised that I stop taking Cytoxan because of the cumulative effects it has on the body, including the formation of deadly secondary cancers.
After the consultation at the Mayo Clinic, my doctor and I started a treatment plan with IVIG.
***The medicine is called IVIG – short for intravenous immunoglobulin G.***
My first dose was in August and I had a severe reaction including aseptic meningitis that took a full week for recovery. My second dose was last week and things went much better.
***After recovering from the side effects of the first dose, I did notice about 8 to 10 days where things were much better for me. The pain was still there but the fatigue was much more manageable.***
I was able to get up and stay up longer and was able to have some great quality time with my wife and daughter. Then, as the month progressed, things kind of went back to where they were – the medicine had worn off and it was time for the next dose.
This time the dose was divided into two parts given on separate days. And, I was given IV solumedrol in addition to IV Benadryl to try to prevent bad side effects. Even so, the day of the second dose, I still got a headache and my blood pressure rose significantly. Thankfully, it went away by the next day. My friends in an online support group tell me that my doctor’s office is still giving me the medicine too quickly and that I should ask them to slow it down a little more next time.
***So I got the second dose of the medicine on Tuesday and Thursday of last week. On Friday, the side effects from the second dose had worn off and I was feeling a little bit better. Saturday was a great day – little fatigue and manageable pain.***
And Saturday also happened to be my 40th wedding anniversary. My wife and I enjoyed a long and joyful day together. We went to breakfast in the morning, spent the day at home talking and watching TV together and went to dinner in the evening. I gave her a custom ruby ring that was made by a goldsmith/jeweler in Minnesota that we had met during my visit to Mayo. Traditionally, the 40th anniversary is the Ruby Anniversary. Isn’t it interesting how sometimes what we perceive as bad things in our lives can turn out to put us in position to find things that we otherwise would have never seen? Certainly physical things like the ring, but also spiritual things that can bring us great joy.
I was overjoyed at how well I felt on Saturday.
***I was hopeful that the medicine was already working this month. Maybe it was but on Sunday I had a flare-up to end all flare-ups.***
I could not get out of bed until almost 10 am. That is very unusual for me. My normal is to get up, no matter how bad I might feel, no later than about 8 am. I don’t like the day to completely slip away from me. I am usually the best in them morning, then as the fatigue builds, I usually must lay down in the early afternoon.
On Sunday, I posted a few things online but really didn’t have the energy to do much. I was still tired and just taking a shower had caused me to need to rest. My son came over and cooked us a great Sunday dinner that included a really unique Greek-style meatloaf, potatoes and slaw finished off by a great pineapple oatmeal crumble for dessert. We also had a nice Skype conversation with my grandson and daughter who live in Northern Ireland. An old friend also came by but I just couldn’t get it going. After trying to rest on the couch after dinner, I had to call it a day a little after 5 pm.
***I was very weak, in pain and the overwhelming fatigue had completely consumed me.***
Monday was a little better but I was still weak, in a brain fog and by the early afternoon was back on the couch because of fatigue that I just could not overcome. However, I did get up after a nap feeling better and got to visit with my son and granddaughter for a while before bedtime. My wife had fixed spaghetti and my granddaughter loved it! And, she also loved the leftover pineapple crumble from the day before. It was great fun and provided great joy to get to feed her a little and also play a little before bedtime came.
***Anytime something brings a smile to your face and joy to your heart, you get some relief from the pain and that’s a great thing.***
I don’t usually have a peaceful night’s sleep but Monday night was one of the soundest sleeps that I have had in a long time. I did wake up a couple of times but went right back to sleep. While the pain was certainly there when I went to bed (I put medicine on the worst places), I did go to sleep without the usual tossing and turning and slept until after 8 am! When I got up, I felt better. Somewhat less pain than normal and my head was a little clearer, certainly better than the day before. I was able to shower and get ready without too much trouble. And, I feel like writing this blog.
***So, hopefully this is a sign that the medicine may be working. I’m hoping to get at least two “better” weeks out of this dose. I hope today is just not an illusion but that it is a peek at how things will be the rest of the month.***
My next dose will be in early October. I continue to take my meds, rub on the various creams that I hope will calm down some of the muscular/tendon pain and try to make the most of each day I am given. I will stay positive and see what the rest of this week brings. But I am hopeful!
***So, I urge you to keep on fighting your own personal battles. Mine has been long and hard and I am sure every day will not be a good day.***
Perhaps the relief I feel this morning will be fleeting and will shortly go away. If so, I will find a way to deal with it. But perhaps I really will find relief this month and the months to come. I want to and I will work hard and do whatever is necessary to try to achieve relief.
***I know that things will never be like they were again. I just want to be able to enjoy good times a little more often with my friends and family.***
And, I am still alive and living and, to me, that means that I still have a purpose in life. I’m not absolutely certain that I understand it, but I know that part of that purpose is to try to help others. So, that’s what this blog is about.
And that’s what my Facebook page is about. If you haven’t visited my Facebook page, here’s a link:
Posting on the page and writing in my blog is kind of my “work” nowadays. It keeps me busy. And when I can, I like to do as much as I can.
***And, while at my blog, look at some of my other posts. I try to share what works for me and some survival tips that help me make it through both the good and bad days that come.***