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

Huge thanks to everyone who has done meal train! It has been such a huge help to us. We love the visits so much too! I know how hard it can be to add it making and delivering food with a busy schedule. We are super grateful!

We got some results for me today:
I got my pathology results from my surgery and my lymph nodes were clear and so were the margins around my tumor. The pathology also reaffirmed my status as stage 1. All fantastic news! I got the rest of my genetic results and I have no additional risk for more cancer!

Next week I have my post-op check-up and I will also meet my oncologist. I will also get a referral for a radiation oncologist to start planning my radiation.

I am one week post op and healing fast! Pain is pretty minimal at this point and managed with ibuprofen. Mostly I am still struggling with a lot of fatigue despite all the sleep I am getting.

Tom finished his chemo on Sunday night! His 6th and final round! We have no plans for more so hopefully he is done and start getting his full energy back! His stomach is still a little unhappy but hopefully will be back to normal in a day or so. No additional symptoms from the swelling so we are really pleased with that. We are now just waiting on his second opinion referral to the surgical team at OHSU. We have decided to accept the possibility of a second surgery to clean up the radiation necrosis/damaged areas of his brain but will see what they have to say. No eta on the consult yet.

Olive continues to be the best dog nurse ever. If only she could pick up after herself and her many toys!

And last but not least we are optimistic our resident skunk has moved on, three nights no sightings so far on the camera-bright lights, ammonia and moth balls (thanks Michelle!)

Today was a pretty good day. We slept 9.5 hrs last night and Nurse Olive woke up as spunky as a puppy, scampered around all day and demanded we spend most of the day in the yard. Today was the first day I didn’t feel super fatigued and Tom had good energy too. Our friends Zach and Roxy brought over their adorable children and a delicious meal.

Update on Tom:
Today we met with the surgeon who performed Tom’s LITT procedure in August and he was conflicted on whether the expanding legion is tumor or radiation effect. He was leankng on the side of surgery to remove the offending area. He went back and forth and said there are arguments for either or it could be both. He feels the legion will be bigger by the next scan but is comfortable waiting. Tom experienced more balance issues on Saturday after riding his bike for three hours and he hot fatigued so we started him back on the steroid on Sunday night. The surgeon mentioned another drug we could consider as well. Tom is still pretty adverse to surgery at this point. We are working to get a second opinion on board. He is still doing relatively well all considered. Please keep hum in your prayers and good energy. I still feel optimistic this will all resolve.

Jess update: As good as I have been at pushing drugs on Tom after his surgeries I did not take my own advice and found myself in more pain last night and this morning than I would have liked but got it under control again this morning. Lots of ice! Overall I am still doing really well and feel very lucky all considered.

We were very spoiled today and an otherwise hard day was brightened by beautiful flowers from our friend Franks and Uncle Don and Aunt Bobbi, deviled eggs (my favorite!) from our friend Kayla, some delicious sourdough from my friend Rachel and a delicious dinner from our friends Brian and Megan. Also many messages of love and caring. And all the Olive snuggles I can handle!

It’s been a wild 24 hours. Tom injured his calf stepping off a stool last night and is a bit gimpy. This morning before my surgery I went to let Olive out and a skunk went streaking through the yard and dived under our deck. Thankfully I saw it and stopped Olive from going out. Tom had suspected as much and had installed one of the cameras yesterday and it appears to be denning there. And I had my surgery today! It went great per the surgeon. Still very tired and a little foggy after my 3 hour post-surgery nap but pain is not bad so far. Tom and Olive are the best nurses one could hope for! We are all home and together 🥰. Very thankful.

Finally some good news to share on here! I just got my genetic results and they are negative for the cancer genes that would change my surgical plan. They tested for 13 variants in this round including BRC1 and BRC2. They are still testing for other genetics and not sure how those will impact my future care, but for now I am feeling some huge relief!
So on Tuesday May 6, I will have my lumpectomy and lymph node biopsy.
This still means I have cancer, these results mean I am at less risk of developing MORE cancer in the future. When I recover I will meet with the oncologist and plan my radiation and hormone therapy. This is a really lucky timeline as I should be recovered by the time of Tom’s next MRI and whatever comes next on that part of our journey. I have gotten flooded with messages from everyone since my diagnosis. I feel extremely lucky for you all. Thank you for your prayers and positive energy!

Tom had his MRI yesterday and it was not any better. The area had increased slightly . The good news is it doesn’t appear to be developing new blood vessels indicative of tumor. Also the two spots on the other hemisphere that appeared on his last scan may be slightly better. Everyone still believes it is effects from his treatment. We don’t want to do more steroids because the inflammation is his immune response and it is doing what it is supposed to, so unless he has bad headaches or severe balance issues again we will skip the steroids. We are going to meet with his surgeon next week, the day after my surgery to get his opinion. Tom’s oncologist recommends we get another MRI, potentially the same day as his PET MRI in early June, or as close to that one as possible. He said if the area has gotten larger at that point, THEN we should worry. He also suggested if it is worse we go in for a full craniotomy and resection of the area. The issue is, the pathology could just reveal that it is old dead tumor we burned in August and not give us the info we need. Neither Tom or I are excited with this option and Tom really does not want another surgery under those circumstances. So we will also start seeking a second opinion…. The plan is also to start his chemo next Wednesday. He has no symptoms, he is feeling good right now, riding a lot and wants to race this weekend. 

I  am on track for my surgery on Tuesday but am still waiting on my genetic results. If I have the breast cáncer genes we will cancel my surgery and plan for the double mastectomy. Results are expected by Friday so it will be down to the wire. I taught my last classes the last two nights and am lifted up by all the love snd support. Dancing as much as I can before I have to stop for four weeks.

So we wait… for both of us. Still riding, still dancing, still praying. 

After nine years and well over 30-50 MRIs, Tom has his routine down. He has his outfit, his perfect juicy veins and brings his  own earplugs. He’s even memorized most the sounds and can tell what  part of the sequence it is in. I had my first MRI in over 20 years yesterday after my surgical team went to bat for me after Providence scheduling had rescheduled my MRI (yes me too!!! 😩) they were able to get me in at Clearview MRI so I could make my 5/6 surgery date. Tom told me to make sure to pee first and drink lots of water after. He forgot to warn me about the attire and I showed up in pants with a bunch of zippers on them. 🤦🏻‍♀️ Yes I am that dumb. Once I was outfitted in some sweet scrub pants a lovely man named Bill set to work digging into my one, pathetic, puny bird vein (hehehe). He expertly placed my IV and then two lovely boob wranglers showed up and put me into the Superwoman position facedown and placed each of my ladies into their designated holding cells. I’ve decided to count the number of strangers who have had to wrangle my boobs since this started and we are now up to 9. It’s humbling to say the least. They placed some safety headphones on my head and set Pandora to my requested “80’s soft rock” and we were off to the races. If you are claustrophobic, this would be a terrible experience but thankfully I am not and it was not bad at all. When the song “Under Pressure” started playing I had to fight every urge not to giggle too much so we didn’t have to start over. And just like that I was done. I felt a little dizzy from the contrast for about an hour and then I was fine. I loved Clearview and would highly recommend them if you are stuck in MRI purgatory with Providence. Today I got my call and there were no additional tumors and my remaining tumor is so small that the clip they placed at my biopsy mostly covers it. So I decided  to issue the Bird MRI challenge to Tom: we are both highly competitive individuals. I told him he needs to beat my MRI results next week with an even better  MRI-no tumor and get back to his stable streak.   With this result we are 1/3 of the way to my surgery. I need my genetic results to come back good and we need Tom’s MRI to be good too. Got some big pick me-ups with all the amazing messages, an awesome care package from my college roommate Katie and some beautiful flowers from my hairdresser and friend Theresa. We also made it out to see a great showing of Grease at our local theater Broadway Rose. Thankful for today and all of you.