We are long overdue for an update. Sometimes these are easier to put off than to put into words and I often struggle to respond once posted because they are draining to write. Just know we both read and appreciate everyone’s messages so much!

Tom had his last scan on 1/16 and the great news was it was unchanged and ruled stable. Unfortunately on Wednesday 1/28 Tom had his worst seizure yet while he was on a video call with his new counselor. He fell to the ground and was unable to respond. I was teaching Zumba and his counselor couldn’t reach me so he called 911. Tom was able to get up as the paramedics arrived and put Olive away but was still out of it and took him to the hospital. They were able to use Tom’s phone to call me which broke my do not disturb setting and I was able to leave. Our good friends and Portland family Jeff and Darrell came to meet us at the hospital. They did a CT and MRI, which they ruled unchanged so we once again do not know what brought on this seizure but it was definitely the longest most severe one Tom has had. We know it was not brought on by him being tired as he had just logged his best night of sleep ever per his Oura ring. We had a great day leading up to it and really felt like we had a handle on things so this last one, particularly the severity of it has us frustrated and depressed, not to mention that Tom has some injuries from his fall. We are very thankful he was on the call and that it was not worse, but we are still reeling. We are so grateful that so many of our wonderful friends have dropped by to see us and lift our spirits the last few days and bring food by. Our community is amazing and we are deeply grateful. 

We will connect with his oncology team this week and see if a medication change would help. Tom and I really do want to get this to a manageable place if possible and we are determined to get him back to mountain biking! 

I’ve still been riding the hormone roller coaster from my meds along with other side effects. Even though the counseling has been helping, I decided I need more help so I went on an antidepressant. I am still in the early stages and navigating side effects from that as well but I hope it will being a bit of relief and balance so I can manage a bit better. 

We have a few theories on Tom’s latest seizure, one I have been thinking about is stress. We have had a lot of home disasters these past few weeks with two separate broken pipes. We literally got one fixed and everything cleaned up and the next day a different one went! If feels like we just hop from one disaster to the next. 

Despite everything we know we are still luckier than a lot of people and again thankful for all the wonderful people who are trying to keep our spirits up during this difficult time. 

We had a bit of a setback last night. Tom had another seizure. He’a okay and I was with him. He stayed conscious and wanted to sit down and managed to take a step which led to a controlled fall to Olive’s dog bed. We are not sure why it happened other than possibly being overtired. We had a big weekend picking up from the holidays and a few organization projects. we are just thankful it didn’t happen any of the dozen times he was up on a ladder and also glad he didn’t end up on a ride by himself. We’re both disappointed and consoled ourselves with some of our favorite takeout tonight and trying to keep Tom rested.

Only one day left of a very challenging year. We hit a few milestones in the past few weeks:

Tom’s most recent scan was ruled stable. We were initially disappointed by the images as they were unchanged from last month. However our oncologist pointed out the swelling appears to be gone. The gray/fuzzy patch that remains on Tom’a brain appears to be radiation scarring and may be here to stay. Overall Tom is doing well other than the Avastin causing him to feel every injury he has had in the past year all at once. But today Tom got his last Avastin infusion and even a reduced dose! Hopefully after being off chemo for a month so far and now being done with the infusions he will be feeling good by the end of January. He also got cleared to ride a bike by himself again which gives him more freedom. We have a few mote months that he will need to be seizure free before he is cleared to drive. Huge thanks to Endo and our nephew Tyler for helping out with some driving! 

I am still adjusting to my medication and some days I really do not feel like myself. I observed some patterns and at least my doctor and I have come up with a plan for managing some of the side effects during my big estrogen drops. My oncologist wants to increase the dose and it’s up for discussion after the holidays, which I guess is soon. 

To cap off a truly shitty year, Olive got very sick with Giardia on Christmas. After a few sleepless nights with a very sick bulldog she got to feeling better with some special food and medication. She loves the food and I think it makes her feel better than even before she was sick. 

Honestly we don’t have another year like this one in us so I hope next year is somewhat easier despite whatever challenges will inevitably come. We decided to take some control and to stop waiting for treatment to “end” and we planned our first international trip again and bought tickets last week. Our oncologist said we all need to “make it happen”. For now at least we have a break until Tom’s next scan. 

Thank you again to everyone who helped us survive this year by feeding us, driving us, cards, hugs, gifts and encouragement. 

2025-don’t let the door hit you on the way out! 

Tom had another MRI last week. It appears that he has had more improvement, the swelling has gone down some. There are still some areas of concern but overall the scan is stable and we are thankful, and no further seizures. Tom has been in a fair amount of pain in his muscles and joints. His oncologist thinks it is withdrawal from the steroid, Tom thinks it is from the Avastin infusions he has been getting. 

We are waiting on some labs for Tom but likely he will start his 12th cycle of chemo on Saturday night. He will also keep up the Avastin infusions through the end of the year pending insurance approval. We were hoping he would be done with chemo but his doctor hinted he was leaning more toward just a break after this cycle… It’s good to stay on top of it but hard to watch him have to go through this for so long…

I started my anti-hormone treatment last week. It made me feel terrible in many different ways including feeling carsick from my own driving, but I changed to taking it at night and things have improved. As I sit here this week, I am pleased with how much better I feel already and hope it continues to improve. I am still having some swelling at my surgical/radiation site  and it could be a mild case of lymphedema. I will meet with my radiation oncologist tomorrow to talk about it more. Thankfully I am still able to dance and teach! 

We have been busy busy going to the doctor nearly everyday and will continue to do so through next Wednesday and then at least I may get a break for the rest of the year. Our friend Frank has been helping out with some of the driving to appointments and it has been a game changer. We have also gotten to see some friends and do some more normal activities again which has also been lovely. 

Olive is doing better after a rough summer and some health issues of her own. The turn to cooler fall weather has suited her well and she is taking longer and more frequent walks again which is good for all three of us. She’s gotten more playful again and we are thankful for our goofy girl lifting our spirits. 

Doctor fatigue is real… and cancer fatigue… All I want for Christmas is a break for both of us. And world peace 😉 

Thank you to everyone who continues to check in and show love and support. 

Jess, Tom and Olive

Tom started his Avastin infusions on our anniversary on 9/9. He felt better for a few days and then his fatigue returned. He had his next infusion two weeks later and it seemed to make a huge difference, he started acting more like himself and had so much more energy. He also did a reduced dose of chemo for his last dose which helped a lot too. It’s been hard to feel hopeful after things continuing to get worse, but hope is a hard thing to crush entirely and we went into Monday’s scan feeling like maybe this one would be a little better-or at least maybe not worse. He also hasn’t had any more seizures. We saw the images first and were shocked to see how much the swelling has gone down and also how the ventricle (bright white spot on the right was being pushed) was no longer being pushed on as much and looks similar to his left ventricle now. To understand the images, the ones on the left are from Monday and the ones on the right are from late August. Also MRI images are reversed so just know Tom’s tumor and swelling is on his right side. The report came in during his third Avastin treatment on Tuesday and also confirmed that everything had improved. Today we met with Tom’s oncologist who again affirmed the results! He said even the PET scan was better as well. The best part is that Tom will get to start resuming more activity. He’s been coming to some of my classes and doing yoga each week but now we can start some short rides on the bike outside again and start some light strength training. We are looking forward to our inaugural ride to our favorite breakfast spot this weekend. We will check him again in about a month or so depending on when we can get the scan and he will do 3 more Avastin doses. He has two more doses of chemo left and hoping to take a break or discontinue altogether. It definitely feels like there is some light at the end of the tunnel where previously there has been none. 

As for me, I am still treating. A lot of people assumed I am done with treatment because I finished radiation but I will be starting my anti-hormone treatment soon and will be taking it for 5 years. And I still have a marathon of doctor appointments to keep us busy when we are not at appointments for Tom. We did get one big shock when we looked at our calendar for next week and realized no MD appointments for either of us, a real treat! 

We also just want to thank everyone for all their continued support. To say this has been hard and things have been dark is an understatement but we have never been alone. I know a lot of people reached out and have showed even more love and support after our last post. We have had friends driving Tom and bringing us food which is such a kindness. And cards and sweet gifts. I especially have gotten very overwhelmed these past few months and appreciate all that people have done to take things off my plate. We both have gotten into counseling and I hope that will help us as we continue on the path ahead. 

Last year we planted a Japanese maple for our anniversary. Planting a tree is an act of hope for the future. A year later we got a very good hopeful present for our anniversary. Tom got his first Avastin infusion this morning! We got to return to our home away from home Providence St. Vincent and we had a lovely nurse that took great care of Tom. With labs and the infusion we spend about two hours there but they do have snacks! So far he is feeling good! Hopefully the treatment will start helping Tom’s swelling and give him some more energy. We will also be able to wean him back off the steroids. The plan is to do one more infusion and then another PET MRI and 1-3 infusions after that. 

We replanned our anniversary weekend to a nearby staycation after some rescheduling of Tom’s PET MRIs by OHSU. We’re hoping to turn off our phones and relax and unwind with no medical providers or estate business. OHSU however continues to want to insert themselves into our plans by refusing to book Tom’s next scan until another one of their reviews. Likely Friday. If someone can talk Phil Knight into buying a PET MRI for Providence that would be another amazing anniversary gift so we could be done with their shenanigans and fulfill our new dream of living at Providence full time. After all, they do have good snacks 😉

We have some updates. It’s been an exhausting couple of weeks with what seems like endless appointments and rescheduled appointments and more than a little stress. Tom’s latest round of chemo got delayed due to a pharmacy error and after a lot of calls from us and his providers he was able to complete this last round last Wednesday. This round hit him the hardest and he felt terrible and could barely stay awake each day by the end. In the middle of that we had his PET MRI last Monday. On Tuesday we ran into delays getting his seizure meds refilled to the point where he was about to run out (do not ever use Express Scripts! ☠️). We were still dealing with that when I went to my oncologist and Tom felt too poorly to come along. Unfortunately she was running behind and Tom’s scan results came in and once again the report sounded terrible that the continued enlargement of the mass in his frontal lobe. I had hoped to postpone the start of my antihormone drug a few weeks until after our anniversary and we decided that with the uncertainty with Tom I could hold off up to three months if needed. I was crying and upset anyway and we called it a day so I could get home to him. Thankfully the one thing that did go okay was that Tom’s providers were able to get the anti seizure meds refilled. On Thursday we were able to get some reassurance from his oncologist’s assistance that his oncologist believes the enlargement is still effects from his treatment and not new tumor and the PET MRI supports that. She said if the swelling causes symptoms like headaches or seizures then we could put him back on the steroid or consider infusions and his oncologist would go over more with us this week. The latest images of Tom’s brain make me cry. They are upsetting. It’s hard to reconcile those images with the healthy, smart man I share a life with. We did not understand how he was not having symptoms, until Sunday.

Sunday night Tom had a small seizure just like the last one I witnessed. We gave him medication and an hour and a half later he had another. More meds and he got a good night’s sleep and has been okay.

Today we met with his oncologist who seems positive about his recent scan and more confident now that we have two PET MRIs that there is not new tumor growth. We put him back on the steroid until we can get infusions of a drug called Avastin approved and scheduled. The Avastin will ideally knock down the swelling and hopefully get him back to exercising the way he wants and needs to do. There are some side effects and it will make his next scan slightly more difficult to detect tumor regrowth but we also can’t allow the swelling to continue in his brain so we are on board with this plan. The infusions last 30 min and he would have them every two weeks for 3-5 doses once he gets started. We will also do a slightly reduced dose of chemo for his next cycle.

Things are hard mentally here. Thjngs are trending in the right direction but we’re also exhausted and depleted from the past year. Tom has lost his independence and his cycling which makes it hard to keep spirits up. We are thankful for our friends like Don who took him to breakfast and a haircut the other day and Brian and Megan who took him to yoga and gave him a fun afternoon with our nephew this weekend.

We’re both still working. Appointment days mean we can both end up working late and I often catch up on weekends.

I am dancing as much as I can because the alternative is crying and/or screaming of which I still do plenty. So grateful again to our nephew Tyler who hung out with Tom so I could still go to my event and Zach, Roxy, Torgy, Darrell and Clay who have hung out with him so I could teach and all my amazing instructor friends who have subbed for me and of course Tom’s sisters who came to stay so I could have my dance adventure. Our village is definitely keeping the wheels on the bus as they keep falling off.

We have been also managing the estate, angels have appeared to help there too and maybe someday that albatross will be off our back. There are court deadlines to be met but hopefully some of the bigger things will be accomplished soon.

We are also deeply grateful to our Providence care teams who are so responsive and keep advocating for us and trying to keep our spirits up on this rollercoaster.

As one of our providers put it, we are in survival mode. Eat, sleep, work, shower and keep the bills paid. We try to find moments of joy where we can and a couple Sundays ago we fled our to do list and messy house and took our cranky, aging bulldog to the beach. We keep getting tastes of normalcy and they slip away again so we enjoy them when they are here. We adapted and replanned our anniversary when critical appts got rescheduled and we are still hoping for a few days to relax and replenish nearby soon. The important thing is we are both still here and keep choosing each other in all this madness.

Thanks to everyone for your love and support.

Last week was a big week. Tom had his most recent MRI. They have been promising us a better scan but the findings the radiologist wrote were not what we wanted to see:
IMPRESSION:

Worsening imaging findings, with progressive enhancing tissue, primarily along the inferior aspect of the previously visible enhancing disease in the right frontal lobe.

In reality, some areas were slightly bigger, some slightly smaller and as Tom pointed out, the volume was the same as his last scan. It also was not obviously pulling a big blood source. There were other findings when balanced out that suggested it could be still effects from his treatment. After we were talked down, it was determined this radiologist likely wrote an aggressive report. Not comforting for us who had to digest it. Tom also couldn’t get his hands on the actual images as quickly as he normally does. We got them minutes before his appointment Thursday and we could not see a big difference from his last scan. His doctor pointed out some positive signs indicating treatment effect-fuzzy edges versus sharp and no indication of that blood source being pooled. There is an area we are watching but he believes it could still be treatment effect and believes it will improve. He recommended another PET MRI if we can ever get one. Recommended still no driving or heavy exercise. It has been almost 7 weeks since Tom’s last seizure so we are thrilled with that.

The following day we saw Tom’s original surgeon at OHSU. We had waited three months for this consult. It had been 9 years since we had last seen him! While the surgical resident was concerned by the radiologist report, the actual surgeon was in sync with Tom’s doctor and thought it is also treatment effect and recommended a perfusion study which is another imaging technique that will measure blood flow and distribution in the brain.

It was reassuring to have the two more experienced doctors believe this is still effects from the treatment. Tom hasn’t had any symptoms in 7 weeks either so that points in the right direction. We can’t thank Tom’s sisters, especially Mary for hanging out with him during my travels and talking us off the ledge when that bad report came in. So we wait again for these images. OHSU isn’t known for speed these days but one can hope, especially after they screwed up his last PET MRI so royally.

As for me, I am three weeks post radiation and healed, or 99% healed. I will meet with my oncologist at the end of the month to get going on my anti-hormone therapy.

This week also marks a year since Tom’s tumor came back. What a difficult year it has been. We’re still here… Thankful, but weary.

It’s been a minute since our last update. We’ve been adjusting to changes and seeing some signs of progress. Tom is now 18 days without a seizure and 4 weeks post crash. We got him out for a gentle ride today to the library and Tigard Farmer’s market. We have been reducing his steroid and tomorrow we will try to have him go off them completely. We’ve also experimented with leaving him alone for a few hours as his doctors said we could and he has been fine. He can’t ride vigorously or drive but we are adjusting to this stage until he can resume regular activities again. I’d like to say he has gotten used to my driving but he’s learned to just look out the window and enjoy the view. 

As for me I am 3/4 of the way done with radiation! If all goes according to plan I will finish on Friday! The area of radiation will also be smaller starting on Tuesday and just limited to the surgical site. I am feeling great and still teaching with no fatigue. I finally learned to hold my breath properly for treatment starting last week and the treatments have gone much smoother. 

We’ve definitely had a lot on our plates in addition to the above, we have lost two relatives to cancer since my diagnosis and I am the personal rep for one of the estates. I feel like it’s been too much to process it all but thankfully we have had a lot of friends and family step up to help us.  We are deeply grateful to our village through all this, people have still been feeding us and bringing sweet gifts by and helping out with Tom when needed and stepping up to sub for me when crises strike. We appreciate all the messages of support as well. We’re still in the thick of it and trying to take it one day at a time. 

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.