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. 

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.

Bird family update:

After today we both have a few weeks off from doctors! Wahoo! 

Tom finished his chemo last week. We have been managing his swelling with the steroid and so far no additional balance issues. More scans for him in mid June. Unfortunately his second opinion with OHSU cannot tale place until mid August but he is on a waitlist to be seen sooner. We just need this darn swelling to go down! 

As for me, I am healing fast! I had my post-op yesterday and all is well. I had most my restrictions lifted but two more weeks until Zumba. Can’t wait to get back to my classes June 3 and 4! 

Today we met my oncologist. She was great and explained things very well. The part I have dreaded most in this journey is the hormone therapy. Because my tumor is estrogen positive we will utilize a drug that attaches to the estrogen receptors in my body to help prevent recurrence. She did a great job addressing my concerns and we talked about the hormone drug I will go on after radiation. We are waiting on my oncogene test results in a few weeks and will make final decisions. I may qualify for a trial of a lower dose of the hormone drug so that would be exciting!  

In a few weeks I will also meet my radiation oncologist. The last figure I heard was four weeks of radiation but the oncologist will make that call when they review everything. 

It’s been a lot to deal with all the above but we really appreciate everyone’s support. I am blown away by all the messages we receive and the help we have been provided. We are going for a lot of walks and enjoying the flowers blooming. 

And… the skunk found a new entry point under our deck, so right now the score is Skunk: 2 Birds: 0