The last week as been a little crazy.. I received my chemo pills last week Wednesday and started my first double dose cycle. I finished the cycle last night. So, I have 1 cycle down and 5-11 left to go 😊 The first few days were not so bad, but the last few days have been pretty hard. Symptoms can continue to last for 3-4 days after stopping the chemo. The gift that keeps on giving.
I am hoping the symptoms go away quickly, so I can have a few “nice” days before I start the next cycle.
This week I also met with my new Neuro Oncologist. Unfortunately, the one Neuro Oncologist in West Michigan is moving out of state (which there are only 8 of them in the state of Michigan). I have now been transferred to Henry Ford hospital systems in Detroit. My care plan is pretty much the same, with a new MRI to be done after my 3rd cycle of chemo. The doctor didn’t really have anything new to add. The only thing he found was a little white dot that showed up during the contrast portion of my scan. It is in a completely different area than my other tumors, centered in my head, around the level of my eyes. It’s not too concerning right now, but its something we will need to keep an eye on during my next scans.
Speaking of scans, they also talked about my MRI schedule. So far, I will have scans every 2-3 months during my course of chemo. Then for the next 2 years, I will have MRI’s every 3 months. After 2 years, I get to graduate to every 6 months. Luckily the tight space doesn’t bother me too much, although I didn’t like having to wear a mask during the MRI.
I also found out I need to have a comprehensive cognitive exam. With the brain surgeries, chemo and radiation, they want to get a baseline on where I stand cognitively. Mentally, I have noticed changes and it will be good to keep an eye on this. As my son likes to joke, I am down to half a brain and we need to protect what I have left 😊.
Lisa has slowly been recovering from her surgery. The first week was rough and she was out of it. Although it was rough, she is a fighter and resilient (she must be since she married me). She is getting better and able to move around more each day.
Quinton & Lisa
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After my last update I had my MRI and an appointment with my Neuro Oncologist. They told me that this scan would serve as a bass-line scan to determine if any new growth of the tumor is occurring. The good news is that the tumor has not grown since my last surgery.
There are some areas around one of the cavities in my brain that showed up with the dye they use. From what they can tell right now, it could be inflammation from radiation or could be small signs for Brain Necrosis. It will be a spot that we will closely watch (hopefully just some inflammation as the necrosis is much more serious).
My Oncologist has put me on a 3-month rotation for MRI’s. So, every 3 months I’ll get to spend some time in my favorite MRI machine. Hopefully Covid will be a little more under control as I had to wear a mask during my MRI. Not the end of the world for me, especially since it led to good news.
Lisa’s surgery went well. I was able to sneak into the recovery area and wait with her (2-3 hour wait to get a room). Luckily, she was cleared and able to go home the same day. Recovery has been harder. She is currently in a lot of pain and can hardly move.
Overall we are doing pretty well. We joked that we hope we don’t need any more surgeries this year (the hospital staff is getting pretty familiar, might need to invite them to Christmas).
Quinton & Lisa
today you are getting an update from me, Lisa, instead of Quinton.
Quinton is at the end of his 4 week break, and I am dreading having him start chemo again. I hoped these last 4 weeks would be like everything was before we found out about his cancer, but sadly, that wasn't the case. I had hoped he would be feeling well, and he has been really struggling. He has been feeling very sick, tired, and emotionally drained. Which in turn has me worried and emotionally upset. He hasn't been able to really do much of anything, as he gets tired very quickly and if he doesn't rest, he gets sick. He has also been struggling with eating over the last couple of weeks and has lost a significant amount of weight, so we have to keep an eye on that.
Over Independence Day we spent a couple of days at his sisters house, so we could enjoy family time and the cousins could play, and they have a pool. Just the kids playing in the pool made the water move too much for Quinton and he felt very ill. It's hard for us to accept that this is the new normal. The kids don't understand why dad can't go anywhere, and why they can't have friends over.
Quinton has an MRI scan tomorrow (friday) and we are hoping it will be good. We always get super nervous before a scan, because who knows what they'll end up finding! We are hopeful and I'm trying to attract positive energy by staying positive as much as possible.
In other news, we found out that I will have to have a hysterectomy, and the surgery is scheduled for july 23. I guess we are really on a roll with medical expenses this year, so whats one more surgery, right? 😀 Maybe we will get a family discount or something :) Please keep us in your thoughts over these next couple of weeks, as I will be layed up and Quinton will be on his new double dose of chemo, so it will be really hard on the kiddos... (and us if I am being honest).
Also, today is Mason's birthday! Our sweet little boy is 7 already, and we are so happy to be celebrating him with Quinton. At the beginning of the year, we really didn't know if Q would be alive to see this. So we are very very thankful that we have such a great medical team working so hard to give us as many years as possible!
As always, until later,
It has been a very busy past couple of weeks. The biggest excitement is that I completed my first round of Radiation and Chemo. Now I am in the middle of my 4-week break! Unfortunately, the Radiation side effects takes about 2 weeks to wear off after the first round.
I did get to keep my Radiation mask. The kids thought it was pretty funny looking and of course everyone had to try it on. I have also been leaving the mask in different places around the house to try and scare Lisa.
One thing that has been hard for me mentally was two big milestones that back in December when I was first diagnosed, I didn’t know if I would make it or not. The first one was Lisa and mines 11 year anniversary. The second was making it to Father’s day. My situation now is not as dire as what I initially thought back in December but mentally it was still something on my mind. As a Project Manager, milestones and setting goals are right up my alley 😊.
Completing this round of Chemo and Radiation also brought on some mixed emotions. I was happy for the break, but mentally its hard not to be doing something to fight the cancer. As it seems with most people’s cancer experience, the common motto is hurry up and wait.
The next rounds of Chemo will probably be harder. My current dose if Chemo is going to be double the strength. Luckily, it will be cycles of 5 days on Chemo, then 25 days off. The current plan is I will be on 6 cycles of this regiment, which should be completed just after Christmas.
Another set of good news is that I have my next MRI and appointment with my Neuro Oncologist in GR scheduled. I will have the MRI on July 17th and then I will have my appointment with the Neuro Oncologist on July 20th to review the results. The big goal here is to hopefully not have any new growth. My type of cancer does not have a cure, is considered life shorting and could come back as a different type of brain cancer (which would be very bad since my type is considered the most treatable compared to other types). However, we have done everything we can to fight this, so I feel like we are on the right track.
Overall, I am doing well. I have been able to spend a lot of time with my family which has been great. I am very thankful for how my body has reacted to the treatment. I have heard stories of people reacting worse than what I have had so far.
I like to end with a joke and my current one is a little dark… I didn’t realize that my “Middle Ages” happened when I was 15. (Totally joking, I am fighting for a lot more time 😊)