Here is Part Two of Mark’s early myeloma journey as told by his 28 year old daughter, Stephanie:
Patient Snapshot: Mark from Ohio (Part Two)
Honestly, I can remember all the way back to October of the prior year, where he (Mark) was having problems walking, because of a bone spur, which I can’t help but wonder if it was related. He’s also had Gout and Plantar Fasciitis in his feet on and off for a long time…
I remember going out to the waiting room and making some phone calls, one to my husband and one to my boss, letting her know that something was seriously wrong and that I was very afraid–and that I was thinking about taking the next day off so that I could be at the hospital with my dad and find out what was going on. I also called one of my co-workers and told her how scared I was, because we had talked on numerous occasions about our parents and how important they are in our lives. We are close with our families, so I knew she would understand the fears that were going through my head. Just the thought of something being wrong with my dad was AWFUL. I didn’t want him to go through anything bad!! I would take it all from him in a heartbeat!! He is one of the most generous, kind, thoughtful people ever and DID NOT deserve anything bad to happen to him. Why was all this happening??
Then my aunt and uncle showed up and they were just as scared as I was. My dad has three brothers, but this one was probably the one he was closest to. We sat and talked in the waiting room and I saw the fear in his eyes as he was trying not to cry. My uncle said he knew something was wrong when Mark, his older brother, said that he wouldn’t be able to do the labor but could direct my uncle and tell him what to do. So we talked about what could possibly be wrong and how scared we were. As I sat in the room with my dad, I started Googling on my phone, trying to figure out what was wrong with him. What could it be? I even Googled oncology to convince myself that it was really the cancer floor he was on. I so wanted to be wrong!
The next morning at the hospital, my dad breaks the silence and starts crying!!! My dad, CRYING!?!? I don’t know that I have ever seen that in my entire life and it wasn’t right. I ran over to him, and put my arms around him, trying to comfort him and said “aww dad don’t cry, it’ll be OK.” Then my step-mom came over and she was crying, too. I heard one of them say “it’s really bad, it’s not good!” My dad said “I have bone cancer.” There it is, CANCER!! He really does have cancer!?! Bone cancer? Isn’t that the worse type of cancer that you can possibly have? The most painful? Is that possible? My dad? I couldn’t cry, I don’t even know if I could breath. I was instantly scared to death!! Paralyzed with fear. I didn’t know what to say or do. I couldn’t hardly move. I can’t lose my dad. He is one of the most important people in my life and I need him for a LONG, LONG time. I had to lay down on the bed, because I started to feel light-headed and thought I was going to pass out. I think my dad was starting to worry more about me than himself. The nurse walked in and said she was sorry we were dealing with such terrible news and I asked her if I could have a glass of orange juice. There are some people that stick in your minds forever and she was one that was with us throughout the stay of his hospital visit and she was so kind, compassionate and caring. I will never forget her. To this day, my dad still laughs about that day, well not that day as much as me and my orange juice.
I called my husband and then my boss and they listened to me sob on the other line, and listened to all my fears and offered me as much comfort as they could. I told my boss I didn’t think I could go back into his room and keep it together. How can I do that? Well, I don’t know how, but after she helped me calm back down, I did.
When I went back into the room my dad’s doctor was in there with his assistant. They had just finished talking and I apologized for interrupting. My step-mom asked if I had any questions. He told me the name of my dad’s cancer was Multiple Myeloma, and that it was NOT bone cancer but a cancer of the plasma cells. Not bone cancer? I don’t know how it was possible, but going from bone cancer to plasma cancer, I was actually relieved. The assistant looked at me and said not to worry and that it was VERY treatable for many years. OK…What does that mean? Most of the conversation was a blur, because I was still trying to digest all the news I was already given. But I do remember another humorous part. They told my dad the type of chemo-therapy he would be on was not like any or most other chemo-therapies and that it shouldn’t make him sick or that he shouldn’t lose his hair. That is the part where we all actually laughed as my dad pulled off his hat and rubbed the top of his bald head (he only has a little hair on the sides). So I told him great news, he was going to get to keep the little hair he had!
The doctor also said that the damage in his shoulder and hip were so severe that he needed surgery immediately–that day or first thing the next morning. His shoulder was paper thin and his hip had a hole in it, which was why he was told he was not allowed to walk. He would need rods down the center of his bone in his arm, from his shoulder to his elbow and one down the center of the bone in his leg from his hip to his knee. First my dad has cancer and now he needs a major surgery. He’s never had much wrong with him his entire life! The biggest surgery he’s ever had was removing kidney stones. Everything was happening so fast…
The surgery was scheduled first thing the next morning. I could only imagine how my dad felt because he was told if he moved the wrong way he could fracture his bones and that it would be worse if he broke something. And they could only do one surgery at a time, so when they were doing the first one, it would be possible they could fracture bones somewhere else. Best case scenario was that nothing fractured or broke; but from the way it sounded, that seemed impossible. I stayed with my dad and step-mom at the hospital the entire time he was there–5 or 6 days.
He was supposed to be taken back for surgery at 7am so everyone started arriving at 6:30 to come see him. Grandma got there with her pastor, which made me a little uneasy at first, because it made me think about someone dying and I didn’t want to think like that. It turned out the surgery was post-poned until 10am, so we had many, many hours to sit and talk. It turned out to be an awesome time. I know my dad was very scared, but I think we helped keep his mind off things for awhile. We all told stories and sat around and laughed about silly things. I really like my grandma’s pastor and it was nice having him there.
I was comforted by all the people around me. When it was finally time to go back to surgery I was allowed to walk all the way back with him. I had never done anything like that before. I gave him a hug and kiss and then my step-mom did as well and we walked away, sobbing. I didn’t cry until I turned away, but then I just couldn’t stop. When I got back to the waiting room, my grandma let me cry in her shoulder and told me everything was going to be OK. Sometimes you just need to cry and let it all out.
That morning, I spent a lot of it on the phone, outside by myself. I called one of my friends who let me sit and cry to her. She told me that her dad had Non-Hodgkin’s Lymphoma, and it made me feel better hearing her story. I love hearing everyone’s stories; they are so inspiring! He was diagnosed when she was little. Then it came back 10 years later. Both times he fought it and moved on. Once I got my tears out, I seemed to be OK. I was able to talk to people again without sobbing. My step-mom wanted me to call a couple of people to let them know what was going on, so I told the story over and over again…
The surgery turned out as good as it possibly could have. No broken or fractured bones. AMAZING! I told you he definitely had a guardian angel looking over him. I was in the hallway when they were bringing him back to the room. He was smiling and waving! He’s such a funny guy! Who does that? It was like he was in a parade!
The first thing I purchased for him was a tiny book I found in the gift shop, with a big message, titled POSITIVE ATTITUDE. Since then I have been his unofficial positive cheerleader, reminding him a positive attitude is very important! I think a positive attitude can do a lot for a person’s health and help reduce stress. He doesn’t let me forget about a positive attitude, either! That night we actually got to sit and watch fireworks from his room. He had the perfect view of downtown where they were shooting them off. So we kept referring to him as the VIP–and that he had the VIP room…
The next few days were rough. They had told him it would be a very simple recovery and that he would be up and walking the next day–and feel good as new in no time. Well, sometimes I think they fudge a little bit stating the recovery time. He wasn’t up and walking the next day and he certainly didn’t feel great. It took a lot of courage and will-power, but he got through it and starting chemotherapy (Velcade with dexamethasone, then Revlimid was added soon after) and physical/occupational therapy by Wednesday of that same week. They transferred him to a therapy/rehabilitation center for the following two weeks where he started to adjust to AC–after Cancer– we call it.
Dad struggled with getting his sugar under control from the steroids and was starting to take daily insulin shots. Pain would pop-up here and there and they would do scans instantly to find out what was going on which made me feel better. I knew he was in good hands.
Since then, he has dealt with pneumonia and a collapsed lung, a rash caused by Revlimid, blood clots in his legs, and a variety of other side effects. Dad struggled learning to walk and re-gain his strength again, but he’s getting there.
He has been to the Cleveland Clinic to see a Multiple Myeloma Specialist who is working with his medical oncologist and will be returning tomorrow, hopefully to find out that he has had a complete response, an awesome reason to give thanks!! They have been sending him information about bone marrow/stem cell transplants. His IgG numbers have already dropped from 7,000 down to 1,070. The chemo is working as expected!
Although Mark was in worse shape than many, Stephanie’s story is not unusual. And like most myeloma patients, Mark’s condition seems to have stabilized and things don’t seem so dark now.
Stephanie has already emailed me an update:
Still on for the stem cell transplant. I was just at the Clinic Friday and yesterday for all of the pre-testing. Dad had to get a bone marrow biopsy done again which he was not excited about. Turns out he originally had it done using a manual crank. But yesterday they used a drill and he said it was so much better! Should be heading up to the clinic on Tuesday the 19th to start the whole process, and placing the port…
I asked Stephanie to provide more information about herself. She continued:
I am 28, married, no children yet. Just pets so far…2 cats and a dog who are so much fun! The dog is a tiny Yorkie/Maltese that only weighs 3.5 lbs. My cats are about 4 times her size. She thinks she’s big and tough though! I work in the accounting department for an emergency/environmental cleanup company, spending my free time with the family and reading as much as I can on Multiple Myeloma. Thanks,
Stephanie describes the scene of a drama that replays day after day worldwide. There are some important lessons to be learned here. Being diagnosed with multiple myeloma–and dealing with the damage a late diagnosis allows–can be harrowing! But things most often stabilize and improve with time.
Mark’s story reminds me a lot of my own; fear, disbelief, physical pain and a seemingly endless recovery. Stephanie and her father should take comfort after reading my story in the book she ordered. There are a lot of similarities there. I was sick, in pain and my myeloma was out of control. But after three or four months things had turned around and I began to get my life back!
Sounds like Mark is on his way to a better place, too.
Feel good and keep smiling! Pat