4/21/2017 - Give Us A Break!

The above tag line is actually "tongue-in-cheek". We do get a break and it couldn't come at a better time!

Round 3 of the 1st cycle started with the blood clot in the left leg which meant shots in the stomach twice a day for a couple months. The good news is that there is very little evidence (if any) of swelling in the left leg now so the shots are obviously working. But, as with any other cycle, there was another "side show".

The day before my last infusion of this cycle, I got a call that my liver count (ALT) was really high. The research nurse asked if I was drinking. I thought he meant water and, at that time, water was actually not tasting very well so I wasn't drinking that much. I told him I should probably be drinking more. The joke was, he meant alcohol. :-) Lord knows, I should be drinking beer but I haven't had any booze since this nightmare started 3 months ago. Kim and I found some info that the ALT number may go up due to the blood thinning drug but the nurse wasn't sure.

So, as we drove into Baltimore on Thursday for infusion, it was still up in the air as to whether the infusion was going to happen. They were going to run another liver panel to see if the ALT had come down. It did a little bit but not by much. The clinical doctors had to make the call as to whether to proceed or wait another day. We didn't want to wait. It was the last infusion of the 9-week cycle and it was important to get it completed (explained below). After a couple hours, we got the go-ahead to get the infusion and all went well. UPDATE: Numbers came down! ALT is still high but in range for the clinical and I have another week to detox. :-)

The importance of completing the 9-week regimen is that it a CT scan can be performed, and we can see the results. This doesn't mean that it's over. It's just to see if the treatments are working. It is the intention to complete three (3) more 9-week cycles. Yes, 27 more weeks or 6-7 months. But, if it's working, then sign me up! That's the great thing about being at Hopkins. You have options and, if something doesn't work, you move on to something else. Or if something state-of-the-art comes into play, you can be considered for that.

Now, more good news about getting the cycle completed and giving us a break. Typically, you have a week off after every 2 weeks of treatment. This break I get two weeks off! Why? Radiation! I was approved to get curative radiation on the tumor in my leg this week and next week. In order to do this they wanted me to have a break from chemotherapy. Win-win! Starting Thursday, I will get 5 days of intense, targeted radiation treatment on my leg. The hope is that it will be blasted out, healthy cells will start to generate, and in two months (perhaps less), I can walk like a normal person. No running, jumping, or gymnastics, just walking. Yeah, I am perfectly OK with that. It means two more months of the leg brace, crutches, and taking it easy on the leg but I've been babying the leg for three months now, what's two more? Plus the cancer will be out of there!

Since I move around like I am handicapped, I figured I might as well get something official.

While we were at Hopkins for the infusion, Toby dropped by to visit (as he does most infusion days). Toby is a good friend from high school and his dad has been at Hopkins since the start of the year. He hasn't been doing well but Toby told us that, for the first time in months, his dad was starting to walk, no longer on meds, and was starting to form positive mental thoughts on getting better! What a true Blessing! Kim and I were so happy to hear. I've been feeding off of this energy as a source of inspiration during my down days.

As always, the outpouring of support from family and friends has been a God send. It's been exactly three months since this nightmare began. I'll be perfectly honest. The past two weeks have been really tough mentally. The "side shows" that I talk about can really wear on you. It seems like you can never take a step forward without taking two steps back first. The blood clot and the liver issue just kind of put me over the edge and it's been tough to stay positive. Plus, when you factor in the chemo effects, you just feel like crap physically as well. Kim has had to endure this and, trust me, I know I've been tough to be around. I know how important it is to stay positive and strong but I wasn't able to do it much. But she has pulled me through this juncture and I feel like there is renewed hope and strength. Today is the start of the next phase. The first 9-weeks was tough but we learned a lot and made it through. We have two weeks off and then we are going to crush 9-weeks before the next scan!


Our love,

Kevin and Kim