A Different Kind of Summer

I have a lot going on in my life right now and I thought now would be the perfect time to update you all.

I think I mentioned this on my Facebook page but if you missed it: My dad has cancer. He actually has Multiple Myeloma, the same type of cancer that Tom Brokaw has. It's a fairly rare type of blood cancer. He's been undergoing chemo treatments for the past 5 months but we are now moving on the next step – a bone marrow transplant!

Just so you know, Multiple Myeloma never goes away. He will never be cured but he can go into remission. The transplant helps patients be healthy for an average of 5-8 years before the Multiple Myeloma returns and treatments have to begin again.

We live in a very small town in Southern Oregon. His oncologist who has been treating him is in Eugene, which is about 3 ½ hours away. We've been going up once a month since December. The transplant, however, will take place in Portland. Portland is 5 hours away. My Dad will have to remain in the hospital for about 3 weeks and then will have to stay within 20 minutes of OHSU (Oregon Health and Science University) for 30-45 days afterwards. In that time he will need a round the clock caregiver in the form of my Mom. Luckily my Mom is a teacher and has the summer off.

My parents will be leaving me, our pets, and our home for this journey on the 6th of July. We are more than ready for this to happen but it's still quite stressful and requires a lot of planning. They will be staying in an extended stay hotel for the duration of their time again. Thankfully we have great insurance and wonderful friends and family members who donated to our GoFundMe account to help us with expenses.

I'm so excited for this next step because it means my Dad is on the road to recovery. Cancer truly effects everyone involved and not just the person with the diagnosis. It's been a rough year but I'm hoping the second half of 2015 will be incredible. It will be a long road to being fully recovered though. It will take a full year for his immune system to be built back up. I'm sure it will be difficult for all of us. He won't be able to spend time outdoors or do many of the things that he loves. In fact, he can't even be very affectionate with our pets. I was planning on taking them back and forth while he was recovering because animals are healing but he can't be in contact with them for a while.

We usually go to the coast a couple of times over the summer but, of course, this year is going to be a bit different. I'm bummed to have to be separated from the two people I love the most in this world. I'm also a bit nervous that I'll have to take care of myself. Sometimes when I'm having a terrible attack I'm unable to do so but I know I have to be strong for my parents, and especially for my Mom who will have enough to worry about with my Dad.

I apologize in advance if I don't post very much this summer on this blog. I'll try to get new content up when I can but I can't make any promises.

Missing Out

I keep trying to picture what my life would have been life had I never gotten sick. I'm having a hard time imagining who I would be, what I would be doing, and what I would expect out of life.

I got sick at a time when everyone else my age was figuring out what they wanted to do with the rest of their lives. They got to look toward the future while still being able to try different things. They got to meet new people, try new things, fall in love, and be young with years ahead of them to get serious and figure it all out. Some were continuing their education while others were finding the career path they wanted to take and others were starting families.

Getting sick changed all of that for me. Instead of getting to be free and in my early twenties I had to put everything to the side and learn how to live while being ill. I can't lie and say that I don't feel like I missed out on a lot but I do feel like I made up for it in other ways.

If I magically got better, I wouldn't even know how to start living a "normal" life. What skills do I have? What do you put on a resume after being ill and unable to work for 6 years? What skills have I developed in that time? I guess I could put things like:
· Able to show extreme patience while waiting in doctor's offices for appointments
· Has good veins and is able to have blood drawn quickly and easily
· Has learned how to push through pain and only take painkillers when pain is beyond unbearable
· Excellent at binge watching television shows when too weak to do much of anything else

So there we go, even if I was well enough to work, what would I do? It's a scary thought, although it's obviously not one that I need to worry about now. I'm just too sick to work and at the rate my illness is progressing I can't see myself ever entering the work force again.

There's so much more to it than just not having a career or a specific path that I want to take. It's also about who I could have been and all of the things normal twenty-something's are supposed to do. What about all the boys I didn't get to date? The friends I didn't get to make? I can't go back but I also don't know how to do those things now. Did I just completely miss out of my twenties because I'm sick? What are my thirties going to be like without getting to experience all of that?

Loss of Control

My body isn't working like it should, and it's scary. I guess my body hasn't worked properly since I first got sick 6 years ago but it's getting worse. I'm losing control over my muscles and it's upsetting. I'm angry about it. I'm also sad.

I'm getting weaker with each passing day and the control I have over my body is becoming more and more erratic. I try to do things and find that I can't. I have to work really hard to make specific motions. I've nearly lost my ability to text on my iPhone and typing on my keyboard is becoming increasingly difficult. My fingers and my brain aren't connecting in a way that makes it so I can do what I should be able to do.

I have so many spasms that I'm afraid to handle delicate things made of glass or anything fragile. I throw things when I'm trying to move them or I drop them and lose my grip when I'm simply trying to hold something. I tried to pick up a glass yesterday and I couldn't open my hand and hold it. Today I tried to rip off a piece of foil to cover something with and I was unable to tear it. Instead the entire roll fell out of the box and unraveled on the floor. A couple of days ago I tried to put some leftovers in a bowl and I ended up throwing the bowl on the counter and then I couldn't pick it back up so my Mom had to do it.

Walking is becoming more difficult. I have to focus really hard on where and how I want to move. I have to move slowly in order to get where I want to go. Going up and down stairs actually hurts, which is an awful thing to experience when you live in a 3-story house. Today I missed a stair and ended up on the bottom but couldn't pick up my feet so I just kept kicking the ground.

My brain is able to understand how abnormal it is and what needs to be done to correct the movements but my body can't. I'm having a hard time comprehending my loss of coordinated muscle movements. I'm in my late twenties and I should be able to do these simple things.