Main » April 2006
April 25, 2006
Location, Location, Location!
As anyone who has ever bought or sold a house knows, it's all about location! Apparently I own a very popular piece of real estate in the shape of my upper right lobe of my lung. A couple of critters have set up housekeeping there and have claimed the place as their own. They go by the name of pseudonoma and mycobacteria gordonae, respectively.
Back in January, I had another bronchoscopy and the doc took a sampling of the gunk coating my throat and upper lung. They found "noma" right away. It's an interesting little bacteria; one that doesn't scare easily. Apparently, no antibiotics are effective against it except one. Once given, the bacteria instantly morphs and becomes resistant to the only antibiotic available that works...so the patient gets one shot at getting rid of it. The respirologist told me that because I wasn't "really sick" (translation: on my death bed) he's going to hold off giving me the antibiotic until the day arrives that I "really need it". Hopefully, that day will never come.
The second critter to pop up didn't show it's face until 2 months after the scope. That's how long the culture takes to grow. "Gord", as I affectionately like to call it, requires a cocktail of three different antibiotics taken together over the course of a year or two to kill it off. We're in the process of growing another set of cultures right now to double-check the diagnosis, but it looks like the doc's on the track of what's probably keeping me feeling "under the weather" for the last little while.
"Noma", my first new neighbour, is the same bacteria found in the lungs of cystic fibrosis patients. The bacteria forms a mucous coating to protect itself from any attempts to kill it. This is why patients with CF drown in their own mucous. Mark gives me a treatment called chest therapy that is used to dislodge mucous from the walls of the lungs; it requires him to beat me with a "cupping" motion of his hands, combined with vibrating and pressing on my back in the area of my lung, which is then followed by a lot of coughing and spitting up. Pleasant...yes?
This explains why I've been getting low grade fevers out of nowhere for no particular reason.
So here I sit, two years after my diagnosis, still alive but wondering what will happen next. It seems like one thing after another and I never know what tomorrow will bring. The beauty of it all is that I learned a long time ago to take each day "one day at a time"; to realize that tomorrow isn't here yet so there's no sense worrying about it. Yesterday is gone and over and done with; nothing can be done to change it. All I have is right now, that's why it's called the present because it's a gift. That's how I live each day, with gratitude for the gift I've been given.
Posted by Sue Checkley at 07:48 PM | Comments (0)
April 06, 2006
What is the "New Normal"?
Attended a panel discussion on Tuesday night entitled, "Life After Treatment-The New Normal". It was presented by Wellwood, the volunteer-run association that helps cancer patients deal with their diagnosis and teaches them how to live the best they can with their disease.
Most of the people in attendance were fresh out of treatment, some only by days or weeks. A few had finished several months back, but it appeared that I was one of, if not the only person who was a couple of years into post-treatment.
Don't get me wrong...I'm very grateful that I've made it this far (2 years since the diagnosis) and I treat every day as a gift. I've read the stats and a very small percentage (15% to be exact) make it to the 5 year marker. It's just that I'm having a great deal of difficulty trying to adjust to living and managing everyday things as simple as taking a bath or making the bed.
After coming home from the hospital in August of 2004, it's been one thing after another, health-wise. First came the radiation-induced pneumonia, followed by pleuritic pain and difficulty swallowing. The Christmas after treatment was frustrating due to the fact that I couldn't eat the beautifully-browned turkey I had cooked. Next came the oxygen therapy because my levels were down to 85 at rest. Learning to adjust to sleeping with a canula up my nose was anxiety provoking, to say the least, as I can't stand anything over my face when I'm having trouble breathing. Every time I made progress in whatever was ailing me at the moment, I'd try to plan on getting back to work...but to no avail. As one set of side effects would clear, along would come another new issue to deal with.
At one point I was introduced to a woman and her partner who were running a rehab exercise program for cancer patients. It was twice weekly for a period of ten weeks and I actually made some improvement on my muscle strength and breathing capacity. It was a year after treatment ended that I felt (I thought) well enough to plan a return to work. Between my doctors, employer and insurance provider, we worked out a graduated return to work program that would see me phase in over a period of three months, until I reached full-time hours and was back to "normal".
Six weeks into the program, I crashed! Hit with another bout of pneumonia and a delayed depression, I just couldn't keep going any longer. The physical and emotional exhaustion knocked me flat on my rear and there was no getting up again for another four months. This was a very dark time for me and without the help of anti-depressants I believe I wouldn't have seen the sun again, figuratively-speaking.
So now we're closing in on Christmas 2005 and I'm thinking, "Now that I'm feeling better, maybe I can try going back to work!" The goal was to wait until the beginning of the new year and start back again in January. Well, guess what? Here I am having trouble breathing again, chest pains, my fibromyalgia and hiatal hernia and GERD have flared up to the point that it's a daily occurrence and my life is anything but comfortable. I'm on enough pain medication to drop an elephant and that's just to keep me functioning so I can stay on my feet and out of bed.
So I ask myself, what is normal for me now? Is this an example of how my life will be from now on? I'm grateful that I'm a two year survivor, but staying positive 24/7 can be difficult at times. My oncologist told me a couple of weeks ago that "this is as good as it's going to get." So now I have to wrap my head around a whole new way of thinking and approaching daily living. Life sure as hell isn't boring!!!
Posted by Sue Checkley at 10:35 AM | Comments (0)
April 01, 2006
No End To The Testing
Mark and I caught the flu together right after my last post. With a compromised lung, a cold or flu can be serious enough to hospitalize me if I can't shake it. Thankfully, I came through and am feeling so much better now. We both had a cough (the tickling, choking kind), and body aches all over with headache. In addition, I had a low grade fever every evening for eight nights in a row. Around 10 p.m. just like clock-work, the chills would start and my temp would go to 101.7 degrees F.
Turns out Mark has a double lung infection and is on his second round of antibiotics. It took eleven days altogether for me to start feeling human again and a few more days after that before I was completely back to normal. We both had our flu shots plus I had a pnuemonia shot last fall as well. Good thing ... can't imagine how sick we may have become without them.
Had to cancel an ultrasound and a mammogram that was scheduled for March 20th and re-book for this Monday (April 3rd.) This time two years ago, I was being put through every test imaginable to see if the cancer had metastasized to another part of my body. The tumour on the lymph node was secondary and the doctors were unable to find my primary. They had to go on the assumption that it was lurking somewhere in the upper lobe of my right lung. Apparently this can happen and the cells can hide undetected in the bronchi of the lung. This is why they call it an occult primary. In addition to chest x-rays I already had, there were mammograms, bone scans, CT scans, MRIs and a PET scan I had to travel to Buffalo for (the waiting list was too long in Ontario). My CEA was elevated to 859 which is usually indicative of pancreatic or stomach involvement, so an endoscopy and colonoscopy were performed as well. Results of that were negative, so they believe my high count is due to the fact that I was a smoker. Yes, I was a nicotine addict of 40 years. Of course, I quit cold turkey back in January 2004 when they first suspected something was wrong with me but I didn't yet have a diagnosis of lung cancer. It was like I knew I had tempted fate far too long already to continue poisoning my body.
Even though the oncologists wanted to start treatment as soon as possible, it took until the first week in July before all the tests could be completed and they could "map" me for my radiation. During this time I continued to work full-time at my job ... it was helping to keep me sane! My treatment program consisted of combined chemo and radiation for six weeks solid. The drugs and the rays were given very aggressively, to the point that I had my limit of radiation and should they not get it all or I should have a recurrence, it would have to be chemo only. My doctors were amazed that I continued to work all through my treatment but that's just the way I am ... stubborn. I figured if I could carry on as normal as possible, it would help get me through the hardest part of what lay ahead. Three days after my treatment stopped, I had to ask Mark to call in to work and tell them I wouldn't be in. I was hospitalized with a high fever and because my white blood cell count was so low, I was unable to fight off a throat infection that developed. A blood transfusion helped to bring my white count up and after 10 days in hospital, I was allowed to go home. Now I thought everything would get back to "normal" and it was just a matter of letting my body heal. Little did I realize that this was just the beginning of a journey that would leave me permanently disabled and continually fighting the long-term side effects of lung cancer treatment.
Posted by Sue Checkley at 09:53 PM | Comments (2)
