This is my first ever blog post, so bear with me as I learn as I go along! Feel free to offer suggestions or advice!
The Diagnosis
As many of you know, my husband Karl was diagnosed with a blood cancer, Multiple Myeloma, in early March of 2017. It has been a learning process for both of us since neither of us had heard of Multiple Myloma prior to being told he was having tests to investigate the possibility of that diagnosis. We turned to Google, which was both good and bad since we found great information on some sites such as Multiple Myeloma Canada, but also outdated and even erroneous data on other sites. Beware of Dr. Google and remember that just because you find information on the Internet, it isn't always correct!
Karl's journey started while we were vacationing in Florida for the winter. We were both retired and living the dream of a winter without that yucky white stuff. Around Valentine's Day we both had a cold. We went out for a dinner and dance in the clubhouse of our RV park (Rainbow Chase RV in Davenport - a great place if you are looking!), but we didn't stay late because neither of us felt well. That night was a turning point for both of us. The next day I started to feel better, but Karl got continuously worse. Eventually I persuaded him to go see a doctor, and he was admitted to hospital with pneumonia. He received IV antibiotics overnight, and was released the next day with a seven day supply of more antibiotics. We decided that our best option was to head for home.
We had driven to Florida, taking the dog and the cat, so we had to drive back. Karl wasn't well enough to drive, and neither the dog nor cat has a driver's licence, so...driving through New York City is not as bad as I thought it would be, but next time we will take the time to plan our route and get off I95 before the Jersey Turnpike enters the Big Apple!
It seemed during the first couple of days that Karl was responding to the antibiotics, but by the time we got home to Eastport he was finding it difficult to breathe and was just as sick as he had been when he went to hospital in Florida. We went to emergency at the hospital in Clarenville, and he was once again admitted with pneumonia, but this time with the added diagnosis of blood clots in both lungs and one of his legs.
While at Dr. GB Cross Memorial Hospital in Clarenville Karl was put under the care of Dr. Vasanthan, an Internal Medicine specialist. He didn't like some of Karl's blood test results, so he ordered more blood tests, a bone marrow biopsy, several ultra sounds, a CAT scan, full body X-rays, a bone scan, a colonoscopy, and a laparoscopy. I think that's all. Now that I see them all in print I am surprised that they were all completed in those twelve days that he spent as an in-patient. On the twelfth day Dr. Vasanthan told us that he was pretty confident that Karl had Multiple Myeloma, which would be confirmed when the results of the bone marrow biopsy came back. Karl was released from hospital to go home for the weekend and go to St. John's on Monday for his first of now many appointments with Hematologist Dr. Manning.
Next post : Chemo
The Diagnosis
As many of you know, my husband Karl was diagnosed with a blood cancer, Multiple Myeloma, in early March of 2017. It has been a learning process for both of us since neither of us had heard of Multiple Myloma prior to being told he was having tests to investigate the possibility of that diagnosis. We turned to Google, which was both good and bad since we found great information on some sites such as Multiple Myeloma Canada, but also outdated and even erroneous data on other sites. Beware of Dr. Google and remember that just because you find information on the Internet, it isn't always correct!
Karl's journey started while we were vacationing in Florida for the winter. We were both retired and living the dream of a winter without that yucky white stuff. Around Valentine's Day we both had a cold. We went out for a dinner and dance in the clubhouse of our RV park (Rainbow Chase RV in Davenport - a great place if you are looking!), but we didn't stay late because neither of us felt well. That night was a turning point for both of us. The next day I started to feel better, but Karl got continuously worse. Eventually I persuaded him to go see a doctor, and he was admitted to hospital with pneumonia. He received IV antibiotics overnight, and was released the next day with a seven day supply of more antibiotics. We decided that our best option was to head for home.
We had driven to Florida, taking the dog and the cat, so we had to drive back. Karl wasn't well enough to drive, and neither the dog nor cat has a driver's licence, so...driving through New York City is not as bad as I thought it would be, but next time we will take the time to plan our route and get off I95 before the Jersey Turnpike enters the Big Apple!
It seemed during the first couple of days that Karl was responding to the antibiotics, but by the time we got home to Eastport he was finding it difficult to breathe and was just as sick as he had been when he went to hospital in Florida. We went to emergency at the hospital in Clarenville, and he was once again admitted with pneumonia, but this time with the added diagnosis of blood clots in both lungs and one of his legs.
While at Dr. GB Cross Memorial Hospital in Clarenville Karl was put under the care of Dr. Vasanthan, an Internal Medicine specialist. He didn't like some of Karl's blood test results, so he ordered more blood tests, a bone marrow biopsy, several ultra sounds, a CAT scan, full body X-rays, a bone scan, a colonoscopy, and a laparoscopy. I think that's all. Now that I see them all in print I am surprised that they were all completed in those twelve days that he spent as an in-patient. On the twelfth day Dr. Vasanthan told us that he was pretty confident that Karl had Multiple Myeloma, which would be confirmed when the results of the bone marrow biopsy came back. Karl was released from hospital to go home for the weekend and go to St. John's on Monday for his first of now many appointments with Hematologist Dr. Manning.
Next post : Chemo
Hugs and prayers to you both.. with love.
ReplyDeleteHi,
ReplyDeleteFirst when Denise first wanted to write this blog, I was really apprehensive about all this information getting out into Cyberspace......but after some thought, I felt that if it could help at least one more person get through the same ordeal it would be a good read.
The journey will take me to the rest of my life, but it will be a good fight, a long fight, but one I will probably lose in the end. Acquiring all the knowledge one can about Multiple Myeloma (MM), its effects and the huge variety of treatments available. The common treatment for MM is a relatively uninvasive form of chemotherapy and a stem cell replacement therapy; it knocks it down and then beats it back to day one of the cancer cell growth.
The first step is to accept that you have Multiple Myeloma, a blood cancer for which there is no cure.
Karl
Hi again,
ReplyDeleteMultiple Myeloma (MM) is a form of blood cancer that forms in ones bone marrow. It represents less then 1% of all cancers and usually doesn't effect people under 60. Researchers don't know what triggers the MM to start growing and there is no cure like other forms of cancer.
As it grows inside your bones, it takes up space required for the production of the other components of you blood, including those that form you immune system. MM causes your blood counts to drop, longer recovering from injuries, difficulty fighting of diseases and infections, brittle bones, liver and kidney failure. leading up to death.
The news does get better, MM is more manageable then many other forms of cancer with many options for treatment with oral, injections, iv drugs and radiation. The most common treatment is CyBorD combined with an autologous stem cell transplant; sounds nasty but I'm almost finished that process and other then it takes about 9-10 months, its not too bad at all.
Hi once again,
ReplyDeleteJust before I was diagnosed with MM, I was sick, very sick. Trouble breathing, walking, unbalanced, confused, couldn't put two sentences together, very tired and delusional, and too stubborn to seek medical help. I was also in Florida, about 4000 kms away from home. My initial diagnosis was pneumonia in both of my lungs. We started the 5 day drive home.
The day after I got home, when I got up I tried getting dressed, I did it but I was hyperventilating and had to lie down for about 20 mins. Off to the hospital we went again.
After an hour getting admitted, I was finally seen by a Doctor. I was anemic, my red blood cell count was in the 80s, my oxygen level was in the low 80s and I still had the pneumonia. I had lost 35 lbs in the last two weeks. After a day or so, they discovered I had blood clots, also in both my lungs, and one more in my hip. The tests went on and then a Dr Vas came in and said he was taking over my case. He specialized in internal medicine, we chatted for a while, he was really nice, seemed very knowledgeable and experienced, but I also detected a hint of nervousness in his voice.
My take on the conversation was the pneumonia in both lungs, the blood clots in my lungs at the same time, the clot in my hip, and everything else going on was the 'good' news. He suspected the pneumonia was not the cause of the blood clots and wanted to do more tests. For the next week they took blood 2-3 times a day, probed, scanned, imaged and they went on and on. The final test was a bone marrow biopsy, and if you have to get one don't believe the Doctor when they say it doesn't hurt, you'll only feel a little pressure. It does hurt and you'll come out if it feeling violated, demand some "happy" meds first.
After 12 days, Dr Vas came in and said that his suspicions were right, I have Multiple Myeloma, a form of blood cancer. He had scheduled me to see a hematologist, that specialized in blood cancers in 2 days. My thoughts were, wow, a specialist appointment in 2 days, it must be bad. As for the cancer, I was in stage 2, my Myeloma levels weren't all that high, I had a small bone lesion in one of my vertebrae, but there was no damage to my liver of kidneys, the cancer was found early. I'd like to say, what a relief because 12 days ago I was really sick, this is wher my wild ride started.