The rollercoaster continues.

Tom had the correct PET MRI on Monday and the radiologist report on Tuesday came back and said the area of concern appears to be treatment effect and not new tumor growth. So very good news. 

On Wednesday morning I was working at my desk in our shared office and Tom walked in and then I heard him breathing funny and rapid and turnes around and he was standing there jerking in place back and forth. I was able to talk to him and make eye contact but when I asked him to respond his mouth opened and no words came out. I timed it and made sure he stayed upright. After 30 seconds it stopped and he sat down and started talking normally. He remembers everything I said and even me trying to check my watch to time it. He’a been wearing a glucose monitor and his blood sugar was normal. He had no warning. It was so terrifying and upsetting and we are definitely frustrated because there is no obvious cause. His doctors increased the dose on his anti-seizure meds.  He started chemo again last night. Today we met with his doctor and he now thinks it could possibly be a focal seizure from the swelling but can’t be sure. He thinks since we increased the dose the chance of another event is low. We are both less confident. We all decided driving and biking should not happen for awhile and while his doctor said the chance of a large seizure is even lower I am having a really hard time letting him out of my sight. He’s already annoyed by his new shadow and hates my driving. His doctor thinks the area will continue to improve and the swelling WILL go down. We will check him again in mid July. 

I had a really hard time holding my breath at my radiation appointment a few hours later after his seizure and it took a long time to do treatment. Today was even worse and I started crying and they decided to not treat me today. They said we could try again tomorrow with the snorkel apparatus. I asked if we could still try today with it and they were able to work me back into the rotation and after some practice we were able to do treatment with the snorkel. I absolutely felt like a weak failure but my team was so compassionate and patient with me, my radiation oncologist brought me a donut and Tom and I met with a social worker after and chatted. My entire team since my tumor was first found has been nothing short of amazing they have worked so hard to make sure I finish treatment in time to go to Zincon. I had already reached out to my counselor earlier today because I am starting to feel the physical manifestation of all this stress on my body. The talk with the social worker helped and hopefully I can connect with my counselor soon. I am 1/4 done with my radiation now. One cool thing is each of the five days I have been there someone has finished their treatment. Looking forward to it being my turn! 

If I  am being honest it feels like we were thrown into a pit in August when Tom’s tumor came back. It feels like every single time we have made a little progress and got a hand or foothold to climb out someone has come and kicked us back into the pit again. Tom keeps getting back up and I feel like I struggle more to do the same. I have to keep believing things will get better but everytime I feel that way it is snatched away shortly after. So it’s hard but we are still climbing. My brain knows Tom will be okay but my heart needs to catch up. I know we are not alone in the pit so thankful for that too. 

Radiation treatment 1/20 done! I decided the first day of radiation is like the first day of prison. You had better flex hard your first day or you will be seen as weak. The puzzle game at the St, V’s radiation waiting room is just as cutthroat as it was in October when we were there last for Tom and denied our chance to finish a puzzle. So we showed up with our game faces. I had told Tom about this puzzle when I was there for my simulation. I had helped with the border and was shocked it was nearly done when we returned. So we finished it. There was no one left to witness our victory except the tech who took me back but I think she was duly astounded by our puzzle prowess. This is our second round here after all. I can see it on their faces, the recognition of names and our faces. I know it’s in my chart. They ask about Tom and I let them know he was there for his own purpose as well-labs. They are so kind and compassionate but it must be just as weird for them as it is for us. My treatment went fine. For the breath hold I watch a screen and as I take in my breath it is programmed to move a marble into a yellow donut. When I breach the edge of the donut it turns green. I am supposed to keep the marble in the center hile until they tell me to let go but if I can’t or sneeze or whatever the machine stops as soon as the marble leaves the donut so that made me feel better/safer. It was actually kind of fun until I remembered why I was there and what was actually happening. When I got home my amazing friend Julie brought me the sweetest gift and some much needed support. She alleviated a lot of my concerns about lung damage. She’s been teaching for awhile now after her battle and has been duch an inspiration as I go through this. I also appreciate all the messages of love and support we got throughout the day. Thanks everyone! 1 down, 19 to go!

Long post-if you are tired at the end of reading this, imagine what it was like to live it!

Tom’s goal that kept him going through his treatment was to ride the Oregon Trail Gravel Grinder ride at the end of June. On Sunday he was doing a training ride with one of his teammates when I got the call I never wanted to get when Tom goes out for a ride. Tom’s description:

“Not such a good ride. Had a seizure and crashed. Huge hematoma on right glute. Banged up right elbow as well. Broke my helmet. Jess picked me up and took me to ER. They did a CT and nothing other than the swelling they have been seeing in there. Such a weird feeling. Just started shaking like I was shivering and could not get my body to stop the bike. Then started swerving side to side until I went down. Whole time I am telling myself just pull over and stop and body would not do it.”

It came on without warning and he remained conscious the entire time. His balance has been great and he had literally just noticed earlier on the ride that his reaction times were improving. The ER doc was not convinced it was a seizure and once he checked Tom out he discharged him knowing we would follow up with his oncology team. Monday they expressed the same skepticism that it was a seizure but our niece who experiences seizures and our friend who also has a brain tumor with seizures also supported Tom’s analysis that what happened was a seizure. His oncology team decided to keep his steroid and antiseizure doses the same until we got his MRI results from Tuesday. The CT he had in the ER was described as “good” and stable so we were still optimistic the tumor was not back but the swelling was noted to still be there. 

The PET MRI we had been waiting 6+ weeks for at OHSU as well as a regular MRI took place on Tuesday. 

On Wednesday Tom received a phone call from OHSU that the contrast agent for the PET MRI used on Tuesday was the wrong agent! It did not check for cancer but rather for dementia(!&$%). They apologized and rebooked him for this coming Monday. They did get his regular MRI. I will say it is a testament to the healing powers of Zumba that OHSU was not burned to the ground Wednesday night. I am pretty sure I’ve never been angrier. We have been waiting and relying on that scan to see if there was metabolic activity indicative of tumor growth. With the crash in Sunday, the stress of a tumor or out of control swelling causing this was off the charts, to wait longer for answers seemed like a cruel joke. And that they could in fact rebook another one so soon just made me angrier. I knew what was coming and told Tom when neuro-oncology called, to not rebook his Thursday appt, we needed to talk about the seizure and we needed to see what the regular MRI showed. Thankfully we were able to keep the appt. 

Tom also had an appointment with Adam, our incredible sports doc on Wednesday. He puts Tom back together after all his bike crashes. He relieved some of our stress that he didn’t think Tom had a serious injury from his crash but would be very slow healing as he landed on his sacrum. As of now Tom still can’t put on his right shoe or sock and is in a lot of pain. 

I called OHSU this morning to find out how this mistake with the PET MRI happened, it’s inexcusable. They apologized and said it was the orders from Providence. 

We met with Tom’s oncologist this morning. They are still looking into the error and explained their side. Both sides have apologized but it’s still a big error and needs to be figured out, especially so that it doesn’t happen to anyone else! 

As for Tom’s regular MRI, it showed the area of concern has reduced by about 5mm! The swelling is still there and maybe somewhat increased, but the result was promising! His oncologist thinks the swelling will follow suit and also decrease. As of now the surgery discussion can be delayed. 

As for the seizure, he thinks it was a steroid induced hypoglycemic attack. If you read about it, this also offers an explanation for what happened. Tom has been experiencing increasing side effects from the steroid including uncontrolled hunger and weight gain. He shared he was actually starting to reach for a gel for energy on his ride when the event happened. I really want to believe this is the cause as it’s been terrifying these last few days waiting for another seizure, but Tom has been just as normal as always since this happened. We are going to do some labs and start monitoring his blood sugar to see if that is the cause. He has been cleared for normal activity (but still can’t ride until he heals from his crash). I think Tom’s explanation and belief he had a seizure is also compelling. I am just hoping for the issue that is less likely to occur again. He will not ride the Gravel Grinder though as he is too injured. It is so sad after all his work and as things he had ordered for the ride start arriving. 

The one bonus in all of this is that we got the results of the dementia MRI and Tom does not have indicators or plaques for dementia! 

The not great news for Tom is that because his oncologist believes this area was responding to the chemo, he wants him to start again for another period of 6 months possibly as soon as Monday pending how the correct PET MRI comes out. 

Overall it WAS the good news we had been hoping for and praying the tide is turning and we don’t have brain surgery looming again. 

As for me, this week’s events took away from my massive anxiety for my radiation treatment that will begin tomorrow. I am scared about the radiation damage to my lungs and worried about the breath hold to protect my heart. I have 4 weeks of going every weekday and if we stay on schedule will finish 7/18 and I WILL go to Zincon! 

We really want to thank everyone who has reached out and our amazing Portland family who took care of us Sunday, arguably one of the scariest days of this journey. Tom’s teammate Josh is one of the kindest humans ever and we are so grateful he was with Tom when this happened. Our favorite humans Jeff and Darrell came and waited with us at the emergency room and helped keep things normal. Sam and Jen retrieved our truck for us and brought some needed cheer when we got home and Megan and Brian brought us dinner. My girl Lorena subbed my Tuesday class so I could take Tom to his wrong MRI and monitor him after. Through everything I feel we are the luckiest unlucky people I know. 

We used to have a bunny living in our backyard. I loved watching it last summer. We noticed it disappeared right around the time the skunk showed up and we presumed it was eaten. Tom spotted ithe bunny in the yard yesterday after we had already seen the skunk slinking back into the yard after a late night. It felt like an omen. We had decided about a month ago to coexist with the skunk. Jeff and Darrell said we had to name them, so of course their names are Flower and Thumper. If they can coexist with us and Olive, we will coexist with our cancer a bit longer. 

I met my radiation oncologist today. They are going to have me do radiation for 4 weeks. Tomorrow is my simulation. Hoping to start next week. Lots of feelings. It did not help that they put us in the exact same exam room we had for Tom’s first appointment 8 months ago and then sent s social worker in (the same one Tom was assigned to 8 months ago). Feels surreal. Not excited that a small bit of the radiation will get a small part of my left lung. Also that I will take deep breaths during my treatments to inflate my lungs and push my heart out of the way so it doesn’t get the radiation. I did get my oncogene score of 19 last week which is considered intermediate risk for recurrence. I will not have to do chemo. But I don’t qualify for the lower dose trial of the anti-hormone drug I will do after radiation and I never did so that was disappointing news.

I DID get to start teaching again last week and it was amazing, and tiring. I am getting back into shape and that feels good.

Tom’s scans are next week. Still no increase in symptoms so we are super happy with that. He’s been riding a lot and trying to get back in shape too.

It’s been so good to see so many of our friends lately. Thanks for keeping our spirits up.