My purpose in writing this page is to document our journey with Glioblastoma/Gliosarcoma from the time that we first knew something wasn’t right until Jason passed away. I am not going to include a lot of stories here. Mainly just a timeline and my impressions of what was happening.
Mid-late April of 2020 is when I realized that something was not quite right with Jason. He was having really bad headaches. They would even wake him up in the middle of the night. He would become confused when he was driving and go the wrong way to places he had been a million times before. He would be confused about what day something had happened…think we had already taken the dogs for a walk when we hadn’t. I convinced him to see the doctor after he became frustrated when we were working on a small landscaping project. He couldn’t figure out the area of the spot where we were laying mulch. Something he would normally be able to do easily.
Jason also had Chronic Lymphocytic Leukemia (CLL). He had never been treated for it, but we made an appointment with his oncologist and talked to her about the symptoms he was having. She was not convinced his symptoms were caused by the CLL and ordered an MRI. He had the MRI on April 29, 2020. We had barely made it home and she was calling us and telling us he had a brain tumor and we needed to watch carefully for seizures and get on steroids to help shrink the swelling right away. I remember Jason sitting at the dining room table shell-shocked. I took his hands in mine and said something along the lines of, “Everything’s fine. You’ll have surgery and get it removed and everything will be okay”.
On April 30th we had an appointment with the neurosurgeon, Dr. Hunt. He showed us the results from the MRI. The tumor was deep in Jason’s brain in the corpus collosum. That is the part of the brain that connects the two lobes. He couldn’t say for sure without doing surgery and a biopsy, but he was pretty positive just by looking at the MRI that Jason had glioblastoma. This was when Jason and I realized the shit had just hit the fan so to speak. He explained what the diagnosis meant…incurable, aggressive, terminal. He recommended that Jason go on disability from work.
Surgery was scheduled for May 12. The days leading up to that are kind of a blur. I know neither one of us slept much. Jason was worried about contacting friends and family so I spent a lot of time on the phone and updating Caring Bridge. Friends and family helped us with a landscaping project in our backyard. That was great because we spent a lot of time out there that summer.
The day before surgery he had another MRI to get a current picture of the tumor. Originally, he had planned on doing a laser ablation where he would basically burn the tumor with lasers. It would have been less-invasive. No need to do a full craniotomy. Well, unfortunately we got a call after the MRI. The tumor had grown in the 10 days since the first one and there was a secondary lesion as well. So the plan for the surgery was changed to a full craniotomy.
The morning of May 12th we dropped Jason off at the door to the hospital. We were in the midst of the Covid pandemic and they wouldn’t allow me inside…not even to drop him off…or to visit. Dropping him off at the doors to the hospital was horrible.
I spent the day at home waiting for news. Some of my coworker friends came and worked in my garden. My sister and sister-in-law were here. I just remember being very anxious and waiting for the phone to ring for updates.
A nurse called me after they put in the lumbar drain. They had to drain out some spinal fluid to make it easier for Dr. Hunt to get in between the two halves of Jason’s brain and access the tumor. Once he got the majority of the tumor out they sent it to pathology so that Dr. Hunt would know for sure what he was working with…glioblastoma as he thought…or something else.
And this is where everything got very confusing. Dr. Hunt called after getting the results back from pathology and said that the tumor came back as lymphoma…not glioblastoma. He said that Jason’s CLL must have spread to his brain…which is very rare. I got to talk to Jason that night and told him “the good news”.
It was a hard few days while Jason was in the hospital. He is not a good hospital patient. I was worried because he seemed to be in pretty low spirits when I talked to him. I think we just really needed to be together and reassure each other that we were okay.
We were able to pick him up from the hospital on May 14th. That day I got a call from his new oncologist…for the lymphoma…he wanted Jason to come in for an appointment on May 15th and be ready to be immediately admitted to the hospital to start chemotherapy. We were absolutely crushed. We would only have one night together and then back to the hospital?? Spirits were at an all-time low. I remember going over to my neighbor’s house and just sobbing my heart out.
On May 15th we didn’t even make it to his appointment before we got another call from the lymphoma specialist saying “nope not lymphoma”. Apparently the leukemia cells in his blood from his CLL tainted the tumor sample when pathology did the quick test during surgery. We were told it was a neuroendocrine tumor instead. So we made an appointment with that oncologist as well as an appointment for a PET scan. So much confusion and questions without answers.
Physically Jason was doing pretty well. His incision was healing really well. He was able to go on short walks. As long as I stayed on top of giving him pain meds…mostly tylenol…he was able to keep his headaches at bay for the most part.
On May 18th he had his PET scan. On May 19th we had our first appointment with Dr. Neil who would be Jason’s oncologist for the next 15 months. She was able to confirm for us after getting final pathology results back that Jason did indeed have glioblastoma…actually a type of glioblastoma called gliosarcoma. We were shocked, but it was a relief to know what we were dealing with and to have a treatment plan in place.
Standard of Care (SOC) for glioblastoma is daily radiation for 6 weeks in conjunction with oral chemotherapy. On May 31st he had his first dose of Temodar. On May 31st he had his first dose of radiation. Thankfully, he never had any issues with nausea or anything from the chemo. The radiation did a number on him though. It caused swelling in his brain which meant more headaches and steroids to combat them. It also made him extremely tired.
His memory issues were also getting more pronounced by this time. I had to change all calls from doctors, insurance companies, etc to come to my phone because he wouldn’t remember who called. He stopped answering the phone if I wasn’t home. Most of the time when people called he would put me on speaker phone because he would be asked questions he couldn’t remember the answers to. This was very frustrating for him.
Up until this point I had been on furlough from work because of the pandemic. On June 9th I was called back to work. Luckily, my job was able to work with me so that I could juggle work and doctor’s appointments. He had some days during this time that he was feeling okay. He was able to play a little tennis with the boys and spend some time with friends.
Mid-June…about halfway through radiation…Jason lost his hair. We continued to try to find a balance between rest when rest was needed…managing pain…and being active when he had energy.
On June 30th we had a follow-up appointment with Dr. Neil. She gave us more bad news. Two of the things that they test with glioblastoma tumors are IDH status and MGMT. Neither of these tests was favorable for Jason. She said the IDH status revealed that Jason’s tumor started very quickly as a high-grade tumor from the start. And the MGMT status was unfavorable because his cancer cells are the tricky kind that can repair themselves. Both things meaning he would need more monitoring and switching up of chemo meds as his tumor gets smarter.
Jason finished chemo and radiation on July 13th. He then had a little bit of a break for “things to settle down in his brain” before having an MRI. We spent part of the break Up North on a family vacation.
On August 4th he had an MRI with a “mixed bag” of results. The site of his original tumor was filled with fluid…not bad. However, he had a new lesion behind and to the right of the first one. She ordered a profusion MRI to get a more in-depth look at it.
Jason has some days when he is feeling really good. He is spending as much time on the tennis courts as he possibly can…especially with the boys. He’s helping out with things at home while I am at work. His spirits are good.
On August 10th he started taking the same chemo he was on before, but at a higher dose. He took it for 5 days. By the end of the 5 days he was noticeably more tired, but not unbearably so. We had some busy days…a visit to Red Wing to see his Mom and Dad…he played tennis with his group of guys…we went to a Boston Scientific picnic to see his coworkers…moved Anna into her dorm at UW-Eau Claire.
We celebrated our 20 year wedding anniversary by spending a few days in a cabin in Alexandria. It was a fantastic trip with lots of memories I will cherish forever.
On September 1st we met with Dr. Neil to go over the results from the profusion MRI. They were good! No blood being “called” to the spots…so in theory no cancer. However, by this time we were noticing that Jason had developed a blind spot on his lower right side.
After meeting with Dr. Neil Jason started another 5 day round of the same chemo at a higher dose again…and I went back to work full-time. This time the chemo made him much more tired and it took a longer time for him to “bounce back”. He felt nauseous a few times, but for the most part was okay.
He had another perfusion MRI scheduled for the end of September and it was concerning. The cysts at the original tumor site were bigger as was the second site in the left lateral ventricle…and both were showing signs of blood flow. Not good. Time for a new chemo drug.
We also scheduled a consult with the neurosurgeon, Dr. Hunt, to discuss draining the cyst and attacking the left ventricle tumor.
Jason had his first seizure the night of Oct. 4th. It was not a shaking-type seizure as you would think of with epilepsy. He became very confused and couldn’t answer questions in any way that made sense. For example, he would say “Fregien Minnesota one two”. He knew who I was, but couldn’t tell anyone my name. We went to the ER and from there he was admitted into the ICU. He was given anti-seizure meds and increased doses of steroids to bring the swelling in his brain down.
Jason HATED being in the hospital. It was a challenge for me to keep his spirits up and keep him occupied so that he wouldn’t get too restless.
On Oct. 5th Dr. Hunt, the neurosurgeon, came to see Jason in the hospital. He was able to schedule surgery for Jason the next day.
Jason had his second surgery on the afternoon of Oct. 6th. I was kicked out of the hospital…wasn’t allowed to wait for him because of COVID…and went home to anxiously await updates.
Dr. Hunt called me when surgery was over. He was able to drain the cyst and resect the second tumor. I was not able to go see him that day and had to wait until the next morning.
When I saw him the next morning he was sitting in a chair and feeling pretty good. His vision was very frustrating for him…blurry and double. He was also having issues with word finding. He spent the day in the ICU because they were waiting for a bed to open up on the 7th floor in the Brain and Spine Unit.
The next day was Jason’s birthday and I was so grateful they let him come home. He was asking every person who came into his room if he could go home. He was done with the hospital!
After surgery Jason was feeling pretty good. We had a full schedule of therapy…physical, speech, and occupational. We discovered that he had a right side vision field cut that would be permanent. He also continued to have issues with finding words for things.
The night of Oct. 15th Jason started his new chemo drug…Lomustine. It was an easy one. One dose lasts for six weeks! He was slowly starting to see some improvements with his word finding…getting more confidence when walking…able to see his phone a little better. We were making it out for some walks…trying to find a new normal. He would get up in the morning before I left for work so I could make him breakfast and give him his meds…then rest while I was at work.
Unfortunately the Lomustine didn’t work for Jason. He had an MRI after the 6 weeks that showed active cancer again. Jason really wanted to enroll in a clinical trial that Dr. Neil was starting. The problem was that the trial wasn’t ready to roll yet, so we went into “waiting mode”. Unfortunately, by Dec 11th Jason was experiencing increasing headaches, confusion, and memory issues….we couldn’t wait for the trial to be ready….so on Dec. 14th Jason started Avastin infusions instead. Dr. Neil hoped that the Avastin would get Jason feeling better for the Holidays.
About a week after his first infusion of Avastin I noticed that Jason was getting increasingly short of breath whenever he did anything physical…even taking a shower. I brought him in to the doctor. They did a CT of his lungs which revealed that there were small blood clots in both. We added a blood thinner to his meds to dissolve the clots. I remember this doctor’s appointment being very long…and Jason being very impatient.
Avastin is Working
Jason received infusions of Avastin every two weeks. After he had two infusions he had another MRI. We were very excited to see dramatic improvement in his MRI results. We started to settle into yet another new “routine”. He would relax while I would work and then we would usually take the dogs to the park to play when I got home. About 15-20 minutes of activity was usually enough.
By February his deficits had stopped getting better and we were just trying to keep them from getting worse. We were still trying to combat headaches with tylenol. Decision making was nearly impossible….even something minor like deciding what to eat or what to wear. His vision issues were very challenging…he couldn’t see anything on his right side and what he could see was often blurry or double. His eyes were also really sensitive to sunlight. His memory…especially short-term…was extremely “spotty”. Reading was virtually impossible.
His MRI in March showed continued improvements from the Avastin. We decided that since having the infusions seemed to be a long-term plan that he would have a port put in so that he wouldn’t have to endure so many “pokes”. His veins were pretty shot by this point.
In March Jason started having some trouble with nosebleeds…another side effect of the Avastin. Because of the blood thinners he was on they were really hard to stop. We ended up in the ER once with a particularly nasty one. I was always worried that he would have a really bad one while I was at work and wouldn’t be there to help him.
April 10th, 2021 Jason had another seizure. It was very similar to the first one that he had so at least I had some idea what was going on. He became confused at dinner and then unable to answer questions or form sentences that made sense. I took him to the ER where they did an MRI and and EEG. He was admitted to the hospital. They determined that he need a stronger dose of his anti-seizure medication and sent him home on April 12th.
By this time Jason was up to his 10th infusion of Avastin…5 months! I don’t think that he ever completely rebounded from his second seizure. All of his deficits got a little worse. His energy level was very low, but we did make it out to watch the boys play tennis as both of them were on the Eastview Boys Varsity team.
Jason’s MRI’s continued to look good, but I was getting more and more concerned about his quality of life. It was the beginning of May by this time and I knew in my heart that the summer would be our last together. I cut my hours at work back to part-time knowing that I needed to be spending more time at home. We planned one last trip up to Ruttgers for family vacation and my friend Katie started a GoFundMe to send us to a pro tennis tournament…literally the only item on Jason’s bucket list.
At the beginning of June, Jason started complaining about his back and his neck hurting. Dr Neil upped his steroids and ordered an MRI of his back and neck to see if the cancer had spread. Unfortunately, the MRI was inconclusive so we decided to manage the symptoms and stick with the Avastin. Jason was overjoyed to be able to watch Seth win second in doubles at the Sectionals Tournament and attend his high school graduation.
We enjoyed a wonderful vacation at Ruttgers on Bay Lake. It has been a favorite vacation spot of our family’s for years. It was nice to just “be” and good to be somewhere Jason was comfortable.
No More Avastin
Jason had another MRI on June 21st. His symptoms were continuing to worsen. I was giving him oxycodone with his tylenol for headaches and back/neck pain. His memory, processing, etc were all worsening as well. His MRI was still stable, but Dr. Neil thought that maybe the symptoms were actually side effects of the Avastin. At this point he had been having infusions every two weeks for seven months. We decided to take a break from the Avastin and see if he would start to feel better.
Jason never started to feel better. His energy was virtually nonexistent. He was stumbling a lot when he would walk. His headaches kept worsening and worsening. I think he had a headache of some degree literally 100% of the time. At the beginning of July we had a wheelchair delivered so I could take him on walks. I just wanted to do anything I could at this point to increase Jason’s quality of life. I was desperate to give him what joy I still could.
Jason’s palliative care doctor started him on gabapentin for his headaches. We hoped that would start to give him some relief. It didn’t work.
By this time Jason’s brother Jeremy’s wedding was in just a few days. We were desperate to find him some pain relief so that he could make it to the wedding. We had an appointment with Dr. Neil on July 20th. She told us at this appointment that she didn’t want to do any further treatment at this time because the side effects would outweigh any possible benefits. She referred us to hospice to get Jason’s pain under control. She thought he had “a lot of living left to do”.
On July 23rd, the day before Jeremy’s wedding, I was able to work with Dr. Neil to get Jason on the right combination of pain meds so that he was able to fully participate in Jeremy and Cheryl’s wedding as the Best Man. It was a great day.
On July 27th we met with the intake nurse and social worker for hospice. They were fantastic. Jason was a little bit confused about the concept of hospice. I think he didn’t want to “just give up”. I told him that we were choosing to take control over what we could. I just knew there was no way I was going to let him die in a hospital. No question in my mind that I was going to keep him home with me.
To Be Continued…
I just can’t write the rest yet. The last 6 days of Jason’s life are the ones that I dwell on the most in my head…when I can’t sleep…and also the ones that I just can’t talk about…even here…someday.