So Day +3 started out about like every day so far, with me having to call the nurse in for Zofran to stop the intense nausea that was upon me. As normal, this miracle drug cleared it right up! They also gave me my blood counts and I’m officially neutropenic, which means my white blood cell counts are 0.02. Normal WBC are between 3.5-10.5. So long old MS infected immune system!
This was the goal of all the chemotherapy and rATG steroids that have been making me so sick. On the chart, “Absolute Neutrophils was marked as TLTC (Too Low To Count.) The goal now will be to get the white blood cell count backup to 1, and when that happens I get to go home! On day +4, I will start taking Neupogen shots again, and those will boost my white blood cell count much faster than it would go up on its own. It will help me get out of here faster. These are the shots that gave me the really bad bone pain a couple of weeks ago. Now I welcome these shots, if it means getting out of here sooner. A perk is that in the hospital, the nurses have better pain medications than what I was getting last time.
Other things on the chart that we are watching closely, are my platelets and hemoglobin. If my platelets drop below 20, then I will need a blood transfusion. This is extremely common, and most likely will happen. Very few get out of here without a blood transfusion. Normal platelet counts should be between 140-390. The platelets are what helps the blood clot if we get cut, thus the reason Dr Burt is so big on me getting up very slowly, and making sure I don’t fall and hit my head. My platelets are still at 133. I’m dropping, but still well in the safe zone from needing a transfusion today. My hemoglobin levels are at 11.5. Normal range for hemoglobin is 11.6 – 17.5. If I fall below 8. 0, then they will do a transfusion. These numbers are also looking good for me. I’ll continue to talk about the chart a little bit more as the days go on, because now everything here has become a numbers game. What happens to me each day, mostly depends on these numbers, and trying to get that white blood cells back to a 1!
So after yesterday’s little performance of not checking all the boxes on my chart, I was glad to be feeling better today. Surprisingly, after I lost my strength yesterday, one of the things I was unable to accomplish was to sit on the spinning bike for any amount of time and also go on my second walk. When in training, it’s common to over train and not be feeling well. People always tell you it’s not a big deal to skip the gym workout, run, or ride. People say that also here in the hospital, but that is actually true in training, here it is not. The doctors tell you to do these things, because they are small things and they know what makes you feel better. Even if you feel like crap, you make yourself just get up and move around a little bit. You’ll feel better in a way. The walk or the ride doesn’t say I have to walk a mile, or bike for an hour, it just says to do it. If you don’t, it’s not like they come in and lecture you, but every nurse I’ve talked to has told me that the people who stay moving are the ones that get out of here faster! Just getting out of bed, putting the stupid gown, gloves, and mask on, sometimes already feels like a major accomplishment when you’re feeling weak, shaky, or nauseous, but honestly doing that is about 95% of the battle! Yesterday was probably the highest fatigue I have ever felt, and when you have MS you know a level of fatigue that most people just don’t understand.
Despite being as active as I have been in the past, a fatigue day shows up every couple of weeks. At this point, all of my plans are scrubbed, but I know the next day I’m usually back to myself. Of course, even the next day, as I start to move, I would usually feel it a little, but once I could get my heart rate up, I could be back to normal. I can’t tell you how many times a fatigue day has come the day before race day. For a while, I would think my races were doomed, but believe it or not, more often than not, I have a great race. It is unbelievable that I could have felt so bad just 24 hours before. In fact, I’m pretty sure I’ve hit some of my personal records the day after a fatigue day!
Once I started my first walk today, I immediately started to feel pretty good. I went right from my first walk into my spin bike session, and that went great. Today’s goal on the bike was to just spin and try not to work up a sweat. The only reason I did work up a slight sweat was because the plastic gown, gloves, and mask get really hot.
Liz’s sister, Jen is in town from Las Vegas, so she can help babysit Olivia, so it’s been nice because I’ve been able to have a few visits from Liz a day. I can’t say enough about how much of this has boosted my morale! Knowing Liz coming to see me makes me want to get up and have some things accomplished, so I’m feeling good when she does see me.
Jen actually dropped by too, and brought me some gigantic amazing chocolate donuts that only Chicago would think about creating! The company was great, and I just can’t say enough about how much we appreciated Jen coming when she did. I know it was also great for Olivia having someone to take her on play dates to the Children’s Museum, Lego Store, and parks.
The rest of the day continued to go well, and I was able to accomplish everything on my list. Also, for the first time, I was able to make it through the night without the Zofran. So once again, the word roller coaster properly describes how things are going here.
This morning, Liz came over early because Jen had to leave today, so she was here when Dr. Burt makes his morning rounds. On the weekends, Dr. Burt comes alone, because his staff are all off, but it was great having more time to talk to him with Liz there, because she always has good questions that I never think of. Plus, she’s better at conversation in general. Also, we haven’t gotten the famous picture with Dr. Burt yet, so we took a selfie with him, since his staff wasn’t there to take the picture. We also took Liz’ 25 week belly shot, using the agenda board in room. Usually, we use the marker board in the nursery, but since being in Chicago we’ve had to be creative. It’s getting pretty exciting thinking about this baby coming soon. I am so anxious to have this behind me, and to be able to focus on feeling better and ready for his arrival in July!
During Liz visit, Jen called and told us to look out the window and she was on the parking garage roof with Olivia, so it was fun to get to watch her run around a little bit. It always makes me so happy to see that little girl bouncing around.
I still needed the shot of Zofran this morning, because the nausea came back, but like yesterday, I was fortunate to be feeling good again. My numbers are still continuing to drop. My white blood cells are 0.1., Absolute Neutrophils is TLTC, Platelets are 112, and Hemoglobin is at 11.0, so while I am totally Neutropenic, I’m still looking like I’ll avoid a blood or platelet transfusion today!
After Liz left, I was able to get a good thirty minute spin on the bike, and then I got a good walk in afterward. As soon as I came in from my walk, I was sitting and cooling off, and in walked my mom with my nephew Nick. My mom just flew in from New Mexico and Nick flew in from Idaho. We had a fun time talking, and it was nice to be able to show them my setup here. I found myself almost starting to get emotional about things that are not even emotional. Fortunately, it is a huge and actual side effect of the drugs I’m on, but it’s so funny to see how weird my body is acting to things while on all these medications! Of course, there is also that little thing that formed from birth which makes you feel comforted, when you see your mother and you’re sick. My mom is an amazing woman. She raised ten kids in hard circumstances, and still was fought over by all ten of us about who gets her attention. I still go to her for haircuts, because I know it’s the one way to get a one on one conversation (and back rub). There are so many moments and conversations in my life I will always cherish because my mom was in them. Without a doubt, I get much of the fight in me from her. I’m definitely a momma’s boy!
When they left, Liz was able to make the Olivia switch with them and come see me for a few minutes. Liz had to check out of the hotel we’ve been in, so she is going to go back to Aurora with my sister’s family to save some money.
Oh forgot to mention, while my mom was in my room, the nurse came in and started the Neupogen shots. I was telling my mom that Neupogen shots are really expensive. And the nurse said “I just injected $10,000 into your stomach.” It was funny to watch my mom’s eyes when she said that!
When everybody left, it was back to business as usual. I got a nice shower, nap, and my second walk in. It felt great to finally get two days in a row of feeling good and accomplishing my goals. I did have some small digestive issues, but nothing a few more prescription drugs couldn’t solve. As I’ve been sitting here trying to finish today’s blog, the nausea has still crept back up, and I’ve been injected with Zofran. I have also taken an Ambien, so hopefully I can wrap this up before the Ambien kicks in.
I’m just going to end on this note that is working for me. For the people out there that are going to have this procedure done, and are looking for the best way to do it, I want you to try to stay moving. I want you to try not to spend too much time in bed. I know there are people down the hall having the same thing done as me. Some have been more sick than me, to this point. Some have already had blood transfusions, but they are still putting on the gown and walking around and working to make it better. I know they are still moving around and that’s how we’re going to get out of here. Last thing, is allow the things that make you happy to help you, instead of making you sad. I could be moping around because I can’t see Olivia, but I remember how lucky I am to be here and that I’ll have many quality years with Olivia to come. It’s all worth it.
One last thing, I got a few encouraging shout outs on Facebook from cycling teammates, mountain bike buddies. and even people at the “Jumping at the Bean” page. I can’t tell you the boost it gives me when I know people out there are thinking of me in my situation. I get so excited to get out there next time! It’s hard not being there, but these people know me enough to know I’ll be back! Little things like this mean the world me! Thanks guys!
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