[rwhook]

30 Years Old, 5 Months After Diagnosis

by rwhook on Mon Jan 20, 2014 1:06 pm

Hello Everyone,

My name is Ryan, I was diagnosed back in August with multiple myeloma about three days after my 30th birthday. To say I'm glad to see 2013 leave is quite the understatement.

Since my diagnosis, I've stayed away from forums, support groups, counselors and the like. The biggest reason is I'm very lucky that I have a very close knit family, good friends, and most importantly a great wife that I can really share my thoughts, even the dark ones, with. However, it might sound crazy but lately it makes me feel good to share my story and I'll tell it to anyone that will listen. With that said, I'm going to follow with a wall of text that is my journey to where I am today.

My multiple myeloma story starts in early July 2013, it was the 4th of July weekend and my father in law was taken to the ER for severe chest pain (he's is fine now). My wife, sister in law and mother in law all wanted to be with him at the hospital but they didn't want my then eight year old nephew and four year old niece to be there until they knew more. I am extremely close with them so I took them for the day to keep them busy. That involved a few different playgrounds around the area. The last one we went to I got a little crazy and was climbing the side in what could only be described as "a manner not intended by the manufacturer". This was a something I always did but this time something new happened. I felt a snap in my chest and intense pain.

With hindsight I know exactly what happened that day but at the time I thought it to be minor. The pain subsided quickly and I thought nothing of it other than laying off of the chest exercises for the time being. I was back to my normal shortly, running, lifting weights etc. In fact, somewhere in there I had a pretty strong 8-mile run I was very proud of. It didn't last and it wasn't long until I went on what is to date my last run.

I got up before work that day for a short two mile run around the block. I was about half way through when my back started hurting, a lot. I powered my way through and got ready for work, again thinking nothing of it. Later at work, I bent over the sink to wash my hands and it felt like I threw my back out. Again however, I convinced myself that it was nothing and just laid off the exercise for a while, telling myself it was simply a pulled muscle.

After a few weeks of lowered activity level, I felt as if the situation was starting to heal itself. I came home from a day on the road visiting clients to an empty house. My wife was out with her sister and I was going to meet them after I changed. We have a heavier than normal screen door that at the time shut like it had a rocket attached. I opened the door and went to catch it as a usually do with my shoulder on the back swing. This time I missed and the inside handle caught me right in the middle of my back.

I went into immediate back spasms and the pain was more than I've ever experienced in my life. The biggest problem, as I came into the house I through my cell phone onto the table and sat on the couch in the living room. It took me a at least an hour to get back to my cell phone to call for help. I was able to get to an urgent care center (again hindsight being 20/20 that was a terrible idea) and they simply told me I had a contusion, gave me Flexeril/ibprophen an sent me on my way.

The worst part to me was we were now about a week away from our planned trip to Washington DC for my 30th birthday weekend and there was no way I was missing this vacation. A week later, the pain was still extreme but I took my pills with me and we went anyways. I was able to get out and walk around every day that we were there but in significant pain. Still self-diagnosing, I even went to a chiropractor in the area whose efforts caused some cracking noises and no relief to the pain.

This was when the loss of appetite started. The first day we were there we met my very good friend out for dinner and I barely ate anything. This trend continued through the entire trip. I suffered through the whole trip, even completing an outdoor scavenger hunt from the Spy Museum and a walking tour of the Pentagon. The whole time convincing myself that it was only a muscle problem.

We got back to work on a Tuesday and that night I went home and fell asleep at 5:30 and didn't wake up until 7:00 the next day. Wednesday I was tired all day even after all of the sleep and slept almost as long that night. When I was still tired Thursday, and still with no appetite, I knew something was up. I love to eat and I usually need very little sleep so neither of these were normal for me. My wife and I work in the same office to I told her I needed to go to the ER.

The ER was not very busy that day and I was quickly having all of my samples taken. However, they came back to me later and said they had to take my blood again, something was wrong with the sample. My wife and sister in law were both with me (my sister in law works at the hospital) and I told them right there that I had cancer. They both thought I was crazy but I just knew it deep down. I didn't know anything about multiple myeloma but I knew something was wrong.

They came back for a third sample of my blood, this time sending someone up from the lab to take it. This confirmed my suspicion that I had something seriously wrong with me even though I hadn't talked to a doctor yet. Shortly thereafter I was admitted to the ER and the doctor who saw me was already talking multiple myeloma. He said I had symptoms that pointed that way but that it was so rare in someone my age they were looking at all options.

Spoiler alert: i was admitted and the next day they told me that were pretty sure that is what I had. On top of that, my kidney's were in 55% failure, I had three compression fractures in my spine and multiple cracked ribs. By this point, I was a mess. i couldn't even sit up on my own power and I was hardly eating. I spent six days in-patient as they did MRIs on my back and made sure I didn't need emergency surgery, which I didn't. I had my bone marrow biopsy done during this time as well (which later confirmed suspicions).

My employer was amazing during the whole process and told me to take all the time I needed. This was great because I was still in rough shape when leaving the hospital and was given Fentanyl as my day to day for the back pain with morphine as the breakthrough drug. I still had a few weeks where I was basically just a zombie with intense back pain but by the end of September things started to get better. Soon I was back to working from home and just in time for our busiest time at work.

I work in health insurance and the fall is when our client are putting together their plans for the next year. I worked most of the season from home but it was a challenge. I didn't recognize it at the time but the heavy narcotics and chemo were seriously hampering my ability to do complex work and my consulting partner was doing his best to not share his frustration with me.

Around Thanksgiving I decided to get off of the pain meds. I was on a very up and down cycle with them, being very tired on the day I was supposed to change my patch and I was over the whole thing. My doctors weren't happy with me but I ripped the patch off and went cold turkey. I went through withdrawal symptoms but survived and more importantly had no pain.

Around this time as well is when they did my stem cell harvest. The second injection of Neupogen caused what is literally the worst pain of my life. I spent that Sunday night writhing in pain in what I can only describe as feeling like my bones were going to explode. The trusty internet had some cancer forums suggesting Claritin could help and no joke I was asleep in about two hours with no more pain the entire time. A few days and five hours hooking up to the blood sucking machine I had gotten all the stem cells needed for two transplants.

Now we are in January and it seems that all my makers are as low as they are going to get. We have an appointment next Monday with the transplant doctors to talk timing for round one. Overall, I'm strangely excited to get this first one started. I just want to attack this thing and start the healing process.

Overall, I feel like I am in a good place right now. I've had my bad days, and bad weeks. I've cried to myself, alone at the house, thinking about the life events I'm going to miss. I've gotten mad thinking of the possibility of my wife falling in love with someone else. They key has been not bottling those feeling up but sharing them with those close to me. By putting them into words, it helps relieve the pressure they create in my brain.

One thing that has helped stay positive is to balance the reality of the situation with hope for the future. I've found to live with multiple myeloma is to live life with uncertainty for the rest of our days. I don't have the benefit of what seems like an "endless future" that my peers have but I'll be damned if I let this disease ruin the rest of my life. I'm going to contributed in some way to the human experience, although I have to figure out what that is still. I'm going to continue to make memories with my friends and family. Most importantly, I'm going to enjoy life.


That is me so far, I hope to keep sharing more as my treatment progresses. If you actually took the time to read the whole thing I thank you for your time.

[LibbyC]

Re: 30 Years Old, 5 Months After Diagnosis

by LibbyC on Mon Jan 20, 2014 5:35 pm

Hi Ryan,
Sorry to hear that you have joined the club. A good supportive network of friends & family will be important for your journey and remember The Myeloma Beacon is a fantastic resource. There are so many people who post here that have or are dealing with myeloma. BTW I can still remember what I was doing when I cracked my ribs and fractured my spine - it is one of those life changing moments that I am not sure I will forget.
All the best,
Libby

[Nancy Shamanna]

Re: 30 Years Old, 5 Months After Diagnosis

by Nancy Shamanna on Mon Jan 20, 2014 6:26 pm

Hi Ryan, Thanks for sharing your myeloma journey to date with us. You expressed it very well, I thought! Like Libby said, I too am sorry to hear about your cancer. And you are so young too! I hope that you find it useful to read and post on the Beacon, since there are many patients and caregivers here you are concerned and want to share with others. Wishing you all the best on your upcoming treatments. I hope that the worst of these painful episodes are behind you now.