Welcome to Mark’s site. Please sign in to show your support.

Journal

View comments
January
16
2021

January 15, 2021

Is it time for bed yet? I'm feeling like this day went from noon to bedtime in the blink of an eye. We are home, and we just ate the delicious dinner that was already scheduled, so that worked out REALLY well. 

They think that Mark had a Focal Motor Seizure which was caused by the glioblastoma (as opposed to the chemo or radiation). They did a CT scan which showed there was no brain bleed or crazy swelling or even significant change to the mass of the tumor, which was all good news. They gave him anti-seizure medicine through his IV, and tomorrow he'll resume taking the Keppra he was phased off of in December.

Some interesting seizure tidbits we learned today:

  • Time the seizure - we should call 9-1-1 if it lasts more than four minutes
  • We should also call 9-1-1 if he has multiple seizures in a row, or if he loses consciousness
  • VA state law specifies that you cannot drive for 6 mos. after a seizure
  • Don't put anything in the patient's mouth -- they will NOT swallow their tongue -- but you can place them on their side to keep their airway clear and prevent choking

Mark is currently falling asleep at the dinner table, so hopefully he will get a good night's sleep tonight. He bit his tongue on both sides, so the soreness is making eating his dinner a little more difficult. He also bruised his chin somehow. He never expected to be the kind of guy who would head to the ER three times in 12 weeks, but that seems to be our life now. As we ate our dinner, we made a list of items to gather for a bag to keep handy when we head out the door unexpectedly. As Mark always says, failure to plan is planning to fail!

Thanks for the prayers and encouragement. We'll try to keep it boring for a while. 😉

Show your love and support for Mark.

Make a donation to CaringBridge to keep Mark’s site up and running.

January
16
2021

January 15, 2021

Home at 7:10. Not great. But not awful. 

January
15
2021

January 15, 2021

Who else looks this good getting into an ambulance? 

It was a scary afternoon for me, but I was happy to see him smiling as he headed to the hospital. 

January
15
2021

January 15, 2021

Unfortunately, we’re back in the Emergency Department this afternoon — this time at UVA. Mark had a seizure at home in our kitchen with Sydney and I close by. This is the first time this has happened, though it wasn’t entirely unexpected. He was on anti-seizure medication for over a month, but he tapered off of it in early December. It was very scary, as I’m sure you can imagine. At first, the three of us wondered if he was having some kind of allergic reaction because his tongue seemed to be swelling, and his face was twitching. He was part of the conversation and couldn’t feel the twitching, but he knew his tongue felt funny. Then he started seizing more severely as I was talking to 911. He was mostly back to normal by the time the EMTs arrived, but we headed to the ER anyway. I rode separately with Cal, but they aren’t letting me be with him because of stricter Covid protocols. He’s in a room and getting a CT scan now. I’ll keep you updated as I can. 

January
14
2021

January 14, 2021

He's all done! Today was Mark's final day of radiation, and his last dose of chemo (at least for now). He has a followup visit with the neuro oncology team on Wednesday morning. After that, he will only have weekly lab work until February 16th when he gets all his scans and tests before starting Neratinib. 

The kids had a plan to surprise Mark this morning as he walked out of his final radiation appointment. But we arrived at Moser a little early, and the radiation team was so efficient that Mark was finished before the kids arrived. He was finished before his scheduled appointment time! So then the staff came out to cheer while Mark rang the bell, and I took pictures. I told them the kids were about to arrive, and they said they'd come out and do it all over again! Sure enough -- the kids arrived about 3 minutes later, and we did it again. Mark was touched that they all came, and he is feeling like a weight has been lifted with treatment being done for now. 

January
11
2021

January 10, 2021

Friday was Day 38 of treatment, and our visit to Moser went about as smoothly as it could have gone. Door to door, we were gone 61 minutes! Because of the two holidays when Mark didn't have radiation, he will have 44 days of treatment (still 30 days of radiation total, but 44 days of chemo to keep them paired). He finishes this Thursday!

The final seven sessions of radiation are a little different from the first 23.  He receives a boost in the radiation in that there is the same amount of radiation, but to a smaller area. My understanding is that this technical difference isn't particularly noticeable to Mark; the procedure doesn't really change for him. Right now the skin in that area is looking pretty tan, and it will be interesting to see if there will be any other changes we can see by the time the week is over.

Mark has made improvements all week since his discharge from the ER on Sunday. He was limping a bit the first few days because of the pain in his calf, and his calf still hurts a little, but he's no longer limping. He felt up to walking by Thursday and is now back to  walking two miles. He's taking the walks much more slowly and paying attention to his breathing knowing that he doesn't want to push himself with a PE. His dosage of Eliquis decreased today and should stay that way for the foreseeable future.

I continue to be surprised by the way Mark's body has responded to everything that has been thrown at him the past couple of months. From his endurance during surgery, to the way his scar has healed, to the severity of side effects from the radiation and chemo -- all things seem to have gone about as well as they could have. Of course, maybe blood clots aren't the best response, but we did catch those in time for treatment, so we'll cross our fingers on that one.

Sydney and AJ start classes online this week. It's January term for AJ, so she'll have one class for a few weeks before the spring semester begins. For Sydney, this is her last semester of college! Hope you all have a great week. 😊

 

January
7
2021

Blood Clots

As Tara mentioned earlier, I developed blood clots in right calf/thigh and right lung around the beginning of the year. I went to the ER on Sat night January 2 and ended up staying there for seventeen hours.

Chest x-rays, two CT scans of my brain, Heparin through an IV, and finally Eliquis pills so I could go home.
This whole event made me too tired to even watch the last regular season day of the NFL.

This explained all the soreness/tightness/swelling in my calf, and also the feeling of being winded all the time, especially on my two-mile walks.

Apparently the clot in lung was preventing the lung from filling 100% with air, thus making me winded after any kind of walking, stairs, or exertion.

Although many of you have mentioned we should be thankful we figured it out soon enough to get to the ER before disaster struck, I can't help but feel like I should have figured it out sooner, especially given the symptoms.

I had a negative Covid test at the UVA Covid Clinic on Monday 4th. This was expected -- I do not go anywhere except Radiation and the Cancer Center. They wanted to rule out that shortness of breath was not from Covid.
Test was one swab up both nostrils for "five to ten seconds". It was not pleasant, but not awful, either. IV's are worse for me.

Finally, I wanted to share with all of you, an explanation about blood clots from a good friend of mine.

The clotting function of the body is handled by a very complex cascade of clotting factors (proteins) which have to be in perfect balance and harmony to appropriately clot when you cut yourself but not clot the blood at other times. There are dozens of proteins that have to all function together to make this happen.

Certain tumors have an impact on the clotting factors by messing up the proteins either by producing too many proteins, producing abnormal proteins or interfering in normal protein production. Many cancers do this leading to an increase risk of clotting abnormalities. 

GBM is known to have this effect and leads to abnormal clotting and increased risk for blood clots.

So the blood clots are likely caused by the tumor itself. Studies show that 20-23% of GBM patients have symptomatic blood clots. I think it is all a result of the tumor cells.

It is true that the blood thinners only prevent future blood clots and prevent progression of the current blood clots. They do not break down the blood clots you currently have.

The blood clots will be partially broken down by your body over time but they will not completely go away.

The body is amazing, it will create new channels to bypass the areas of obstruction by the clots and will form new channels through the clots but portions of the clots will persist for a long time and possibly forever, but the body will adapt.

Think if you cut yourself, at first it bleeds, then it starts to clot and then you get a scab and eventually that goes away but then you have a scar. Same thing inside the body, clot, then eventually that heals and dissolves but leaves scarring within the vessels. The vessels are damaged but will find a way to function again if that makes sense.

This explanation helped me a lot in understanding what has happened and what will happen in the future.

I hope to walk a mile today (Thursday 7th) and maybe get back to two miles this weekend, although NFL will make it tough.

Thanks again for all the comments, texts, kind words, etc. They mean a lot to ALL of us.

Mark

January
3
2021

January 3, 2021

We're home! The past 18 hours were terrible, I'll be honest. I felt guilty that I didn't figure this out sooner, I felt apprehensive that we were heading straight into Covid-land, I felt confused about whether to head to UVA or MJH, and I felt panicked that we weren't going to figure things out fast enough. It turns out that Mark has a clot in his right lung ("not big, not small") and a clot in his right leg that runs from mid-calf to mid-thigh. No wonder he was having some calf pain! Clearly, I missed some signs along the way.

Mark needed to start on a blood thinner as soon as possible. The blood thinner doesn't break up the clots--his body has to do that over the next few months. But it does prevent clotting so that his clots don't get bigger, and more clots don't start. Before they started the heparin in an IV, they did a CT Scan of his head to make sure he wasn't bleeding there already. Then, this morning, they drew blood to measure the change in his PTT (partial thromboplastin time - how long it takes your blood to clot) and were happy with the results. They scanned his head again to make sure he still didn't have a brain bleed (he didn't) and switched him over to an oral blood thinner. He will take that twice a day probably for the rest of time. And then they let us go.

Please keep all the healthcare workers in your prayers. The ER was VERY busy, and we never did get moved to a regular room. One nurse told us that they are ALWAYS busy this time of year (folks are busy and forget to take their meds or take care of themselves (pneumonia) or they travel and catch things (flu), and that this year is all of that plus COVID.