So What Exactly IS Multiple Myeloma?
So I thought at this time I’d return my blog back to its roots. What is Multiple Myeloma? Simply put it’s a blood cancer and it’s one I’ve lived with since 11/27/10. Yup. I know date.
MM creates malignant plasma cells and causes them to accumulate in one’s bone marrow. Plasma cells are a white blood cell found in bone marrow. Bone marrow is the spongy stuff in the middle of the bone. The malignant cells then crowd out the healthy cells that fight infections. They will then create abnormal antibodies called M proteins which serve absolutely no purpose to the body. They can cause tumors, kidney damage, bone destruction, and impaired immune function. MM usually displays the most activity in bone marrow.
So what causes MM? Currently that has yet to be determined. Originally it was thought that it’s origins began in the 1970’s but now researchers have learned it’s been around for at least a few centuries. In the past few decades researchers have made advancements in understanding how MM develops. It isn’t hereditary and having more than one family member diagnosed with it is extremely uncommon. If a person develops MM most likely their plasma cells developed enough mutations during their lifetime that their healthy cells became cancer cells. Interestingly many of the first responders to Ground Zero during the 9-11 attack in NYC were later diagnosed with MM but no correlation has been discovered at this time. Right now there is no cure but it can be managed in most cases.
Symptoms can be anemia, excessive bleeding and an inability to fight infections. Excessive M proteins can cause damage primarily to the kidneys and also other organs. Also tumors can develop causing damage and pain to the patients bones. Some patients might have osteolytic lesions, which are weakened spots on bones. This bone destruction increases the risk of fractures and can also lead to a serious condition called hypercalcemia (increased levels of calcium in the blood). For myself what caused me to visit my doctor was my vision becoming progressively worse, having a sinus infection that I couldn’t shake and even the smallest of cuts not healing. All over a two month span. My optometrist referred me to my regular doctor who did a blood test and had the results reviewed by my cardiologist, who I see regularly due to having high blood pressure, who then referred my case to the Swedish Cancer Institute.
I was called at home by the Institute who said my results were reviewed by Dr. Jeffrey Ward who specializes in hematology since it was a blood issue and that it doesn’t mean I have cancer. When I saw him I told him what I was told and he goes “Oh no. You have cancer.” Kinda funny looking back at this conversation. Because he treated the conversation casually I didn’t feel any anxiety and asked questions. For eight months I went through a chemotherapy regimen of Velcade, Revlimid and Dexamethasone. Eight months of experiencing at various times swelling, weight gain, mood swings, problems sleeping, increased appetite, loss of sense of taste, diarrhea, nausea, vomiting, constipation, loss of energy, skin rashes, neuropathy, muscle weakness, anemia, heartburn, chills, depression, loss of appetite, muscle spasms, blurred vision, non-healing cuts, shortness of breath and pain, pain, pain. I never took any pain killers. Yeah, I’m that stupid. Dr. Ward even told me at one point that he could prescribe marijuana if I wanted. I think he was amused at that.
I remember several people telling me things from their own experiences that I took to heart. From my cousin telling me how difficult chemotherapy was for her husband and to never give up, a friend from church reminding me of a church member who gave up when she was diagnosed with Stage 1 cancer and as a result died from it, and a co-worker telling me to “keep your eyes on the prize” while in chemotherapy. I really delved into social media, especially FarmVille, CityVille and others because it was a way to interact with people and they wouldn’t know just how lousy I was feeling. Later my long time hair stylist, who I lost track of when she left the salon she was at, found me through the grace of God. That’s all I can say. She told me how she lost her brother to cancer when he went into sepsis during treatment. Then another long time co-worker/friend told me the same story about her own brother. I took in all the information that they shared with me. More on that later.
At six months I prepared for a stem cell harvest. An MM patient needs to have a stem cell transplant to, in effect, jumpstart their immune system. Before their medical team can do the harvest they need to bring the M proteins down in the patient then initiate high dose chemotherapy to kill off any remaining cancer cells. That’s when I lost my hair. There is a small danger of developing a serious infection because this chemotherapy will effectively kill off your existing immune system so I was sent home. There’s more bacteria in a hospital than at home. Of course I beat the odds and got two different infections that are found only in a hospital environment before even leaving the hospital. I later learned that from a terrific nurse who kept me informed of everything going on. I don’t speak doctors language. My wife rushed me back to the hospital after I hit 103 on the thermometer. When we got there she left me by the parking garage elevator while she hunted for parking, knowing I wouldn’t be able to walk far and I didn’t even have the strength to stand long and slumped to the ground. I struggled to walk in but wasn’t about to use a wheelchair. Usually I get motion sickness so I avoid them. When I was admitted I was immediately placed into a room to wait for a doctor. About 3 came in and while they were discussing my condition I felt a small ball of what I can only describe as a ball of cold energy form in my core and begin to grow. I said I was cold which for some reason immediately got the attention of the medical staff. Then that energy washed over me like a tidal wave and I collapsed, hyperventilating and going into a seizure. I tried to get under control, I really tried but I couldn’t. I told myself if I could stop hyperventilating for a moment then I’m in control of the situation and everything is gonna be okay and failed. Miserably. The staff threw several blankets over me and I slowly began to wind down. I had my head on Cindy’s lap, completely exhausted. I was so weak I couldn’t move or even talk. The medical staff in the room went into a huddle and then told us they would be moving me into their ICU unit and brought a gurney in for me. They slowly moved me out, saying everything would be okay and then BOOM! We’re off and running! Lots of yelling, saying “Out of the way! Move! Move!” It was like something out of the television show ER. I curled into the fetal position and closed my eyes. Only way to prevent motion sickness. Then I heard someone yelling “Hold the doors! Hold the doors!” I was then thrown into an elevator and I actually bounced off the back of it. I heard the gurney clank off the wall. Then I heard “Where’s the wife! Where’s the wife!” “There she is! There she is!” “Hold the door! Hold the door!” Lots of repeating. The doors closed and then…silence . Then I heard Muzak. Blech. I swear I heard a version of Let’s Go Crazy by Prince. Huh? I was able to take a peek and saw a nurse looking at the ceiling with a WTF look on her face. I’m sure she were thinking the same thing. Muzak is weird.
When the doors opened I was slowly wheeled out, again quietly being told that everything would be okay and then we were off into hyperspace again. Running through the hallways with a lot of yelling. Then we burst through a couple doors and were in ICU. I heard a nurse again yelling “Where’s the wife?” And someone responded “I don’t know” and she said “Someone find her NOW because she needs to be here JUST IN CASE.” Now that got my attention. I knew damn well what she meant. With a supreme effort I immediately sat up which startled the staff. I heard a gasp. They thought I was unconscious and wouldn’t have said what they said if they knew I was conscious. But just by sitting up was too much for me and collapsed again but someone caught me and slowly laid me down.
Cindy caught up with me and the staff updated her on my progress. She looked worried and scared. She came over to my side, put her hand on my head and I looked at her, too weak to even talk. But when I looked at her she immediately looked up and said to a nurse “He said he needs to go to the bathroom.” I never said anything but boy I really had to go. She was told they didn’t want me to walk to the bathroom in case I’d collapse and hit my head but could bring in a urinal bottle. A nurse came over and she lifted up my gown and there’s no polite way to put it: she stuffed me into the bottle and looked away. I tried to go, having to really, really go but couldn’t go. I’m assuming that I was so mortified about the situation I just couldn’t. I looked at Cindy who said that this wasn’t working and repeated that I wanted the bathroom. They tried to compromise and asked if simply standing up would help. I thought to myself that we could try and Cindy said “He says we could try” and they got me to my feet. Then opened my gown for all the room to see, stuffed me into the bottle with a nurse holding me up by each arm and another holding the bottle while looking away. Really, this wasn’t any better. So what was done next was for Cindy to hold the bottle while the staff stood behind a screen, one of which was holding me by the gown. I was finally able to go and it was glorious. Cindy closed the bottle and gave it to a nurse while two others helped me back to the gurney. I was finally able to talk and because of the entire situation decided a Seinfeld line would be appropriate and croaked out “I was in a pool.” Nothing. I thought to myself “Tough room.”
I spent four days in ICU. I had three seizures in a 24 hour period, the second one violent enough to where I passed out for 12 hours. When I came to I had eight bags of various fluids and medicines hooked up to me. The third one happened after I came to and was told they were waiting for me at X-Ray and I needed to drink a glass of something to help with the test. For some reason I didn’t want to but was again to weak to talk. The nurse was insistent so I took a breath and I chugged it down, it seemed incredibly cold and immediately got that cold ball of energy again. I went into another seizure but this time instead of being scared I was PISSED. The nurse was nowhere to be found and in my head I was screaming “I TOLD YOU SO!” Cindy was calling for a nurse with the buzzer but there was no answer so she just went outside the room and screamed for them at the top of her lungs. That’s when they finally showed up and threw a bunch of blankets over me until I stopped. I don’t think they do that because I’m cold, which I’m not. But so I don’t hurt myself during the seizures. Then when I wound down from the seizure they said that they had to hurry me to X-Ray because appointments are hard to get. When I got there I could barely stand but had to for the chest X-Ray. They propped me up and I held onto the machine as they took it and then they ran over to me before I collapsed. Then I was returned to my room and I fell asleep but was woken up every hour so the staff could take various samples and give me oral medication. It’s exhausting to be woken up every hour. At one point the president of UW Medical Center and some of the board visited me. I was too out of it to really converse with them though.
So I learned that I went into septic shock ( told ya ) and I had a 38% chance of survival. Cindy said the medical staff were changing the bags hooked into my catheter every 45 minutes as they were trying to find the right combination of medicines and steroids to fight the infections. During this short period of time I added 25 pounds and I already put on 15 from my initial chemotherapy regimen because of all the fluids being pumped into me. My fingers swelled up so much that they looked like chicken strips. I will add that the UW Medical Center has the best hospital food around. Get the chicken sandwich.
I left the UW Medical Center after only four days. (I learned later they thought I’d be there a month) When I got home I started wandering around the house. My wife just stood back and watched me. I went to the fridge, lifted the plastic wrap off the leftover lasagna that I made before I left for the hospital and smelled it. A home cooked meal smelled wonderful. I didn’t know if I’d get to one again. I went to my bedroom, sat on the bed, felt the sheets and comforter that I knew so well and slowly sank into them. I put my face into my pillow, I could scent the familiarity of it and began to sob uncontrollably. It was overwhelming. I still don’t quite understand as to why other than that the events of the past few days finally caught up with me. My wife saw everything and came over to me and sat on the bed and put her hands on me as she cried with me. That snapped me out of it and I stood up, got myself under control and told her I was fine. I think I didn’t want her to see me like that. Gotta look strong I said to myself. Especially since the kids will be home soon. Dad is fine. Sh’yeah right.
I began a 3x daily chemo regimen at Seattle Cancer Care Alliance for a month. It was exhausting and amazing. I saw the daily going on’s of an international cancer center from opening to closing. I met some amazing people while in the chemotherapy lounge. From a war veteran who was grateful that a stem cell donor was found in Germany to give him a stem cell transplant, ( Due to the Nazi’s over zealous desire to create a master race Germany has an excellent system that catalogs their citizens blood cells) a teenager that always kept the staff in stitches by telling jokes that were a little too “mature “ for his age and a 7 year old little girl who would come in with her stuffed animals looking forward to her chemo session where she’d get to have a room to herself with a TV and all the applesauce that she’d want. They inspire me and shamed me for feeling so bad about my own situation. For one of my sessions I had to return to the UW Medical Center. When I did the entire ICU staff visited me and told me that they were happy to see that I was doing better. The entire staff. I am amazed and appreciative of that.
I went thru my stem cell harvest over a three day period ( equally exhausting) for a future autologous stem cell transplant if needed. An autologous stem cell transplant is defined as when the stem cells which were taken from the patient’s own blood. That’s better than an allogeneic transplant which is transferring stem cells from a matched donor (usually a relative). Less chance of rejection. Basically I’d have multiple tubes hooked into the catheter that was attached to my chest and for 13 hours it would recycle my blood, skimming the stem cells off of it and placing them into a cryogenic storage unit. When all was said and done I got the catheter removed by Terri, one of the lead nurses whom I made a connection with. She told me in all seriousness that after all I went through she hoped that if I learned anything it’s to always advocate for myself. Especially when it comes to my health and all things cancer. I’m still learning on how to apply that lesson.
So that’s the Readers Digest version of the cancer events in my life. Even though it was a terrible ordeal ( I always say what Doctor McCoy says about chemotherapy in Star Trek 4 absolutely nails it: it’s like something out of the dark ages.) with cancer comes wisdom. And not just for things medical. But not everyone’s cancer experience is the same. It’s unique to each person. Where they take it is up to them.
Me, one thing I did was set some small goals which I’ve met. My hair came back more full than before though when it started growing it came in colored red which amused the family. I do have a little bit of red and brown in my hair but only maybe 3% of it. Sometimes if I’m in the sun a lot it shows up a little bit. Chalk it up to an unknown Spanish ancestor somewhere way back in my family history. I’ve seen my children graduate high school, I’ve traveled a bit, cooked more, became a grandparent ( with another on their way ) and saw the Seahawks win a Super Bowl! Booyah! For icing on the cake the Sounders finally made up for losing in the NASL championship 2x in the 70’s to the New York Cosmos by beating Toronto FC. They’re right across from NY so I’ll take it. Another small promise is to always keep chocolate on my desk at work. A reminder of the worst side effect of chemotherapy to me. Never realized how much I took taste for granted. I stopped chemo on 8/10/11 and I want to get to 10 years without having to return to it. If I do the chances of it returning is really slim. I’ve been told that I still have MM, that it’s so minuscule only someone looking for it would find it in test results, and someday it will probably return. I have enough stem cells in cryogenic storage at SCCA for two transplants. (Sadly my insurance is always fighting me on paying for it. They seem to think storing them is a choice? ) I also take a daily dosage of Revlimid as a maintenance regimen to keep things behaving. Not without its side effects but the alternatives are much worse. Until then I take each day as it comes and give glory to God for the blessings He has given me.
