I will apologize for not updating sooner. I get wrapped up in daily activities and just forget to write something. Since it’s been forever since I wrote I will do my best to remember everything.
First, it’s been a little over 18 months since I had my treatment. Time does fly by sometimes. It is exciting following some comrades that are going thru the treatment, it brings back great memories.
You’re probably wondering how I’m doing. Actually pretty good. I have not used my cane since the 20th of June, so that’s over 4 months now. I still have good and bad days, but I’m feeling stronger. I still have issues with fatigue and spasms in my legs. I’m hoping with time that this will get better.
I recently washed my car for the first time in like 5 years. I haven’t had a dirty car that long, I had other people wash it for me. My legs were pretty tired afterwards, but my car looked fantastic. lol
I’m bowling again. I go bowl one game a couple times a week. Today was my best game since going back, I bowled a 163. I love bowling and it’s good to be doing something that is somewhat athletic.
Lastly, I graduated in May with my MBA from Hawaii Pacific University. It was a long time coming and it’s finally over. One of my goals was to walk across the stage without my cane and I did it.
Well that’s it for now. If I didn’t cover something that you’re wondering about, please ask and I will answer it in another post. I promise it will be sooner than my last one. Thanks everyone for your support, I really appreciate it. I am very grateful for having this treatment 18 months ago, Life is really good.
I know this is earlier than my 7 month update, but I thought I’d share a little bit about my appointment I had with my neurologist today. I have not seen or talked to her for over 3 months now. So I show up and she asks how I’m doing. I gave an honest assessment on how I’m feeling…..fantastic! LOL Kidding. I gave her a rundown of some of the improvements that I’ve noticed. I showed her that I can squat down and stand back up fairly easily. I also showed her that I can lift my feet up to put my socks and shoes on. She had me walk down the hall, turn around and when I was walking back she had me walk on my tiptoes and then on my heels. After that she had me walk like I was on a tight rope with one foot in front of the other. The last one was a little more difficult, but I did it better than I did before. She checked my reflexes and some are better than before. She got all excited and wanted to write this all down in her notes so she didn’t forget it. She even went back in her notes from previous appointments to compare with today. She said that she was very impressed. In the past she has said that she doesn’t like to jump on to fad treatments, not saying that this is, but she likes to wait. She doesn’t like to be the first or last person to have her patients try something new or different just in case it does more harm than good. She likes to see things with her own eyes. It makes me feel pretty good that she’s starting to believe in the treatment. Then she bashed how the pharmaceutical companies are just out to make a quick buck. That part cracked me up. Getting her to see the benefit of HSCT, is a huge accomplishment. Score 1 for the HSCTers, 0 for the haters. LOL
Woo hoo! Today is my six month anniversary since I got my stem cells back. Can you believe it! Time sure does fly.
I knew going in to this procedure that the recovery will take some time and it has. I posted a video today on my facebook page to give everyone a visual on how I am doing.
It’s hard to pick out all the details of what is good and what is bad. I’m very grateful for what I can do now. When I go to work every day I have to walk up 36 stairs (4 flights of 9 stairs). I try to walk at least one of the flights without using the rail or my cane. About a week ago I walked up all 36 stairs without using my cane. I tried to skip last week, but that wasn’t happening. LOL My hair has grown back pretty good and I think the curls are leaving. I no longer look like one of the Brady kids.
There is only a couple things that are irritating me with the recovery. The first is the rash on my fore arms. It doesn’t itch and there isn’t any pain, just looks bad. I have an appt again next week to have it looked at again. I’m not overly concerned right now. The second thing that has been annoying is I have not been to physical therapy in over a month. My insurance has been dragging their feet and it’s delaying me from getting back in there. I’m pretty close to getting it all fixed and should be back in there soon.
Lastly I want to mention some bad news that I got a couple days ago and it’s really been on my mind since then. Two days ago one of the members of our forum on facebook passed away in India while going through a procedure very similar to what I got in Russia. Her name was Gabriella and was bound to beat the MS monster. We’re a very close group of friends on facebook and most of us have never met. We talk with each other about getting treatment and/or our experiences when we went. We are all very concerned about each other and when I heard about Gabriella it was rough. She got an infection when her immune system was very weak and she was not able to recover. When we go to get this treatment we all know that this is the risk we face, but we are dedicated to getting better. I am very sad about what happened to her and I am praying for her husband and family.
That’s it for now. I am doing better and I think once I get back into PT I will be doing even better. I hope you’re all able to see my video and how far I’ve come so far. Thank you all for “Rooting” for me during this time. I hope to give another update in about a month, unless something big comes up.
Well it has been five months since I got my stem cells back. There are some bad and good things that have/are happening during this process.
I will start with some of the bad things. The first is that I have a little rash on my forearms so I was a little concerned that it could be shingles because some people get it after HSCT. My rash does not itch and there isn’t any pain. I went to the doctor and they confirmed that it isn’t shingles and it could be that my immune system is still a little out of whack. She gave me a lotion to put on it and it is almost gone in like 2 days.
Another annoying thing is with my legs. I still have good and bad days. The past few days my legs have been tired, but it could be that I feel like I’m coming down with a cold. I still went to the gym earlier in the week and worked out.
Which leads me into a good thing that recently happened. Like I said, I have bad AND good days. I was in Las Vegas last week and I walked a lot. Generally speaking I didn’t have problems when I was there. I did get tired, but I’d just rest for a little bit then I was on my way. Here’s the best thing though. Usually when I travel I get a wheelchair to take me to the gate and when I land one is waiting to take me to the baggage claim. When I landed in Honolulu I walked from my gate to the baggage claim by myself. I did use my cane, but did not need a chair. This is a big step (lol I said step) for me because I have not did that in years.
The next thing is my hair is still growing in pretty good. It’s still a little curly though. Hopefully that will only last for a few more months.
I wanted to let everyone know that things are still going pretty good. If anything drastic happens I will let everyone know right away. At the latest I will give another update at the 6 month mark. I’m pretty excited to see where I’ll be at that time. I appreciate the words of encouragement and the concern people still have for me. Mahalo!
Just another update on how things are going. Well it is two months since I came back to paradise. The recovery process is coming along nicely. I pretty much got rid of that cold that was driving me nuts. I still feel like it’s there, but it’s not bothering me. My blood counts are still really good and the doctor told me today that they are normal.
I went back to work on the 3rd of July. I was a little nervous because at a minimum I have to walk about 54 stairs during the day. I will say that generally speaking I have not had a problem. There are some days that I walk 126 stairs and at the end of those days my legs are pretty tired. I just think that it helps because in the long run my legs will get stronger.
The last big difference is my hair is growing back…slowly, but it’s there. The top of my head is really fuzzy. I’m tempted to shave it again so that it might grow back faster. Also to be honest, the bald head is a lot cooler in the summer.
Well, that is about it for now. I just wanted to let everyone know that things are going pretty good. I wanted to let everyone know that I appreciate the words of encouragement and the concern people having shown for me. Mahalo!
This is long overdue. I thought when I created this blog that it would be easy to keep up. Let’s just say that I was wrong. It is easy to get distracted with other things. I would like to give an update of my time in isolation and since I’ve been back in Hawaii.
After getting my stem cell on the 12th of April, my blood count dropped enough for me to go into isolation on the 14th. Isolation was not that exciting really. During this time I continued to receive IV’s of meds. There were only two incidents that I think I worth mentioning.
I got a slight fever (99.5) and I immediately got meds put in my Hickman line that took care of the fever. Dr. F wanted to know if I ever got a fever that was 99.5 or higher.
The other incident was my platelets. When I was in isolation waiting for my blood count to bottom out, my platelets went down too far and I had to get a transfusion of platelets. This was something that I didn’t want to do, but I had no choice and ended up being no big deal. During the isolation time is when I started to lose my hair and one of the nurses came in and shaved my head. I also rubbed my chin in the shower and my goatee came off. I was hoping to grow one since I had no hair on my head, but it wasn’t to be.
I was out of isolation on the 25th of April. This was nice because my wife was able to come hang out with me again. Over the next few days my meds were tapered off and I got my ritaxumab treatment that lasted a few hours. I was then released on the 29th of April. My legs were too tired from the 5 weeks in the hospital that I did not go around the city. I did go to the mall to get some KFC though.
I returned to Hawaii on the 2nd of May. On cool thing was my two friends, Mike and Brian, from when I was in the Army showed up at the airport with shaved heads to support me and my journey. I think that was way cool. That is one thing about the military, the friendships you make will last a lifetime and they will be there for you during tough times.
The recovery process is a little harder than I thought it would be. My legs are weak, but I try to do some exercises every day and they seem to be getting stronger. I had my blood drawn after two weeks back in Hawaii and my blood levels are pretty much back to normal levels. I did get a cold a couple of weeks ago and it is slowly getting better. I went to the doctor 3 times this past week to get meds. Hopefully it will be gone before the weekend.
That is the highlights for now. Thank you everyone for your concern and words of encouragement. I hope to give everyone an update in a week or so.
Sorry I have not kept up with my blog for the past week. When you finally get through with the chemo there is a lot of mental relief that comes with that and I was just enjoying getting back to actually wanting to eat something. Now I can not stop eating. Also right before my stem cells were given back to me last Friday (12 Apr) my internet was not working properly. So I will give a little update on the stem cell process and if anyone has questions, feel free to ask because I am sure I will miss some details.
So Friday the 12th of April was set to be my new birthday. When people go through this process it is like being given another shot at a normal life so we wish each other happy birthday on this day. The morning was pretty relaxed for the most part. I believe I got a couple of bottles of IV that morning, but I do not remember. My wife and our friend Tammy that is about a week behind me in this process were hanging out a little bit.
Then it was time to prep the room for the procedure. I’d say this was about 11 am or so and all of the clutter had to be put away. My room was situated in a way that they could get the blood pressure machine on one side of my bed and they set up the other side to prep for the stem cells. I learned that once the stem cells arrived that the process had to start very quickly because we did not want to lose any through the warming up process.
Dr. F put an oxygen mask on my face and started to tell me that if I felt certain things to let him know right away. I said no problem. I could tell things were going on around me, but I just focused on what Dr. F was telling me and then all of a sudden fire, tightness, and trouble breathing hit me like a bus just came crashing through. I was thinking “Thanks doc for the warning!” I continued to focus on him telling me to breathe and watched him looking at the bp monitor because if that falls they will have to act immediately with meds. Then there was a little relief while they prepared the second set of cells. Remember, I had to go through two days of collection. Yippee! Then the bus returned for its second run over my body. Thank God this was just a little batch of cells. Then I was done. That process lasted about 10 mins or so. Then the recovery from the procedure started.
After the procedure was finished Dr. F said just to stay still for about 2 hours, but here is a bottle to pee in. LOL He had to check to see if the cells went through or something. I really did not remember why he needed that first pee, but he did. I was focusing on the room spinning so many different directions. I was laying down and I felt like I was going to fall off of the bed. I felt like that for about 30 mins. They told me I could take the oxygen mask off, but I wanted to keep in on for a while. I finally did after the room stopped going a million different directions.
This was a really insane experience. I told Tammy that when I was getting the cells back all the feelings and visuals were something I never experienced before in my life. My visual that I gave her was the scene from “Bruce Almighty” when Jim Carrey is coming back to life at the hospital and all of the brightness and people was kinda what went through my mind.
Well, that is the stem cell day for everyone. I will write about this isolation process in the next couple of days. As you can probably guess, isolation is just that and there is not much excitement at this point. Mahalo for tuning in. Hope you were entertained.