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Good test results for Jess!

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!)

Nurse Olive’s orders!

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.

More updates

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!

All is well!

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.

Surgery!

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!

Surgery?

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. 

The Bird MRI challenge

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. 

The wait continues

Tom was supposed to have his regular MRI this week and start what was hopefully his last round of chemo tonight. We were finally supposed to get answers on what has been happening in his head for the past month-better, worse? We had been waiting on approval for his PET MRI still. Someone at Providence got the bright idea to cancel his regular MRI last Thursday when they saw the order for the PET MRI despite it neither being approved or scheduled. We both lost it and they won’t fess up to who did it… Thankfully Tom was able to get it rescheduled for next week which is a minor miracle because getting an MRI at Providence these days is really difficult given how booked they are. They delayed the chemo because they don’t want it in his system if he has tumor regrowth ans needs surgery. So another week of waiting 😩. And that PET MRI… well it got booked and approved today for June 5, which is basically no help. Tom finished his steroids and is doing well. His balance recovered and he found a killer deal on a new bike… Please pray for us and send good energy. I can actually feel ulcers developing as we wait for it. I want to believe it is just swelling and I do believe that, but it is still scary as hell. If it’s tumor, he will need a craniotomy. If it’s tumor we already planned with my surgeon that we will reschedule my surgery and I will start hormone therapy until he is recovered. But for now, he rides, I dance, we pray.

When everyone in your house has cancer…

I am so used to posting cancer updates about Tom, I never stopped to consider I would be posting one of my own. I changed jobs recently and before I left that insurance I figured I would wrap up as many appointments as I could. I had a colon cancer scare over the holidays which turned out okay. Next up on my list was a mammogram. I’ve had regular screenings for 8 years-the age my mom was when she had breast cancer. My first one was abnormal with a biopsy that turned out fine. So I was not super concerned when this one came up abnormal. But this time they did a follow-up mammogram and ultrasound. Y’all there are angels that walk among us, Dr. Jerry is definitely one and I found another in Brooke the ultrasound tech at Providence. Seriously this woman is amazing and there is a really nice bottle of wine in her future! She was super thorough to the point of me thinking I had been there way too long. Then she started measuring something. Shit, I said in my head. She left to talk to the radiologist and came back and said she wanted to ultrasound my armpit. Double shit. She left again and I cried. The same feeling as over the holidays. I could not have cancer at the same time as Tom. I mean c’mon! In what world does that happen?
The radiologist came back with Brooke and they said they found a 6 mm mass and it would need biopsy. The ultrasound didn’t reveal anything abnormal with my lymph nodes. They were very serious and hooked me up with a nurse right away. They all acted like I already had cancer. We scheduled the biopsy and in a daze I went and taught my Wednesday classes (thank you Crunchies, you don’t know what your energy did for me that night). Over that weekend I convinced myself my biopsy would be fine like the one 8 years ago. It was not. On April 1, I got a not funny April fool’s day joke. Invasive carcinoma grade 2-the most common type of breast cancer. Again, in shock, I went and taught my Tuesday night class. (Thank you Tuesday night crew, you literally pulled me out of one of my darkest moments). But it was tiny… The early genetics showed it was estrogen and progesterone positive and HER2 negative (all really good, treatable indicators). I met with my surgeon this past Friday and loved her. She recommended the surgery I wanted-a lumpectomy and lymph node biopsy. She described my tumor as super tiny and assured me I was not going to die, it would just be a hassle. She gave me my official staging as early stage 1, so super positive. We discussed I would still need more genetic testing to confirm I do not have the breast cancer gene and an MRI to make sure I don’t have more tumors. If both of those are okay I will move forward with my surgery May 6. I will have to do radiation after I recover but it sounds like I will get to avoid chemo! I will be on hormone therapy after for the rest of my life. I know I will be fine but one of the hardest parts is that I will not be able to dance for 4 weeks post surgery. Dancing and teaching keep me going… I literally cannot even imagine what it will be like to not do it for that long. But I will be able to ride a stationary bike after 2 weeks… so I won’t go completely insane. Mentally I am very overwhelmed with all the insurance, scheduling and also we are still in the thick of it with Tom’s recurrence. I hope we are at the end of it and he will be back to normal, but Providence has made it their mission as of late to reschedule, delay and inflict more stress than two humans living with cancer should endure. My best friends convinced me to stop saying I am fine. I know I will be fine, but really right now I am not fine. I am exhausted. Right now the only moments I feel fine are when I am working or dancing… But I will be fine and it will go fast. I am super lucky and thankful for early detection and that amazing ultrasound tech Brooke. This could have been so much worse had she not found it! Get your mammograms ladies! And I am thankful I have almost two weeks left to dance it out…TLDR: I have breast cancer but I’m going to be okay!