Keeping everyone in the loop about Colleen, remember:
She doesn’t want a bubble of exclusion. She just wants positivity. As she has said: “She doesn’t want a bunch of negative thoughts,” “yes this sucks, but I’ll get through it! and we can hang out.”
November 11 - CLEAR
Last Thursday the 5th, Colleen went in for her CT scan, and it came back Clear! Yesterday (11/09/20) she had the follow-up meeting with her oncologist:
“I had a good virtual visit with my oncologist this morning. She said that everything looks great, and we came up with a plan for my medical care for the next five years. I just spoke with the port surgeons’s office, and as soon as my referral goes through, I can schedule the surgery. It can be as early as this Wednesday or Thursday!!!!! This one will be with local anesthesia, not under general. I feel fine about that. It’s nothing compared to what I’ve already been through. Things are looking good!”
June 23 - Chemo Update III
Chemo free week, and a nice Tuesday.
Hey all! Last week was another chemo week, which means about 5 days of not feeling well. It seems like each round brings a new kind of miserable. Hopefully, as the chemo gets tuned, she will have some kind of consistency, as opposed to a new experience every other week. During chemo week we have round-the-clock anti-nausea schedule: Zofran: every 8 hours, Compazine: every 6, Marinol every 12. Plus we have to space out Zofran and Compazine about an hour to 2 hours apart. Fun stuff. Sometimes we have 2 and 4 am pill times…Yay!
This week however is the mostly back to normal week: Eating, energy, laughing. Walks on the beach (we saw Eddie Vedder today) , going for drives. It helps that we have new kittens, which means critters for the kids and Colleen to cuddle with. So if you do reach out: this is the week for it!
Here are some pics from today:
Cuatro de Mayo - Chemo Starts - Shipping Shenanigans
Hello! So today is the start of chemo. Colleen went in around 10 and was at the infusion center until about 2:30. Everything went well except that the company that is sending the oral chemo dropped the ball, it could have been UPS. A total mess up on delivery timing. It should have come on Friday, but it didn’t. When it didn’t arrive on Friday and we checked in with the shipper, we were told that they would stop the delivery from being on a truck and we could pick it up at the UPS Customer Center, “just tell them your last name and you’re good to go.” I head down to UPS and arrive at opening, give our last name, but they don’t have anything by name: “Do you have a tracking number? We don’t usually go by name.” The guy was nice enough, and went looking, but eventually said that UPS would call (which they didn’t). Thanks UPS!
I went home, picked up Colleen, and dropped her off at the infusion center. At about 2:30 when Colleen was just about finished with her infusion, she made a call to ACREEDO (the oral chemo provider), and their tracking department. Nobody there had any idea if it was even in Seattle…WTF? It’s super frustrating! Anyone shipping anything: always, always, ALWAYS, provide a tracking number!
In other fun news, her side effects right now are the cold temps thing. To the point that she couldn’t even have her hand outside the car window. She wanted some fresh air on the way home, put her hand out the window and it started to hurt. She also noticed that her lips and fingertips were tingling and later realized that it was probably the AC on in the car. She even tried a cracker when she got home that was just cool and it made her jaw hurt.
Onward she goes!
April 29 - Port Surgery II
Drugs!
Everything went fine, and as planned. Her surgeon was very pleased and came out to tell me that it went really well. She’s back home taking it easy.
Notable quotes:
As she’s being wheeled out of the office to the elevators to head down to the garage, she says,
“I can see why people with a drug problem can get into trouble!
I mean I feel like I’m fine to drive!”
At home talking to her Dad:
“...I really like these drugs!”
April 29 - Port Surgery
Port day
Nice summer pic of Colleen at the Kelly-Stevenses old house in Ballard.
Hello everyone. Today Colleen goes in for her port surgery. She has to be at the Swedish Day Surgery clinic? floor? place? at 12:10, and her surgery is at 1:10. I pick her up at 3:15 and back home we go. I need to be there for any instructions, as, in her words, “…based on the last surgeries I’ve had, I’m totally out of it!.” Aside from, what I’m sure will be a successful surgery, she should have some good stuff to say. Past gems include: “This is the best fucking apple juice I’ve ever had, and “…am I in labor?”
I’ll add another post tomorrow.
April 20 - Small update
Colleen wanted me to share a small update: Her port surgery is on the 29th, and chemo starts on May 4th. She also says thanks for all the continued support!
One of her concerns was not feeling like she had a single point person for having a holistic view of her treatment. She had a call with her primary care physician today that went really well, and she reassured Colleen that she’s there for her, and will help keep track of everything, plus she’s available for any questions Colleen might have.
Thanks again, I hope you enjoy a bit of color in the post.
April 18 - Oncologist
Hello everyone, here’s a brief overview of Colleen’s appointment with the oncologist. On Thursday she met with (video call) her oncologist Dr. Hu.
She will be on a regimen called CAPOX
The doctor is having her wait a couple more weeks to heal more and to keep improving her strength.
It’s a combination of IV and oral chemotherapy
Next Monday she gets her height and weight officially recorded for the oral chemo, and in about a week (of the 27th) she’ll have a port installed and her IV chemo will begin at the start of May.
Luckily because of her age and the stage of the cancer she will only be on chemo for 3 months as opposed to 6.
The rough cadence will be IV 3 weeks on, 1 week off, and I believe the oral will be two weeks on, 1 week off.
I’m not going to lie, after that call it was pretty anxiety inducing for Colleen. It basically triggers her CPV, which then triggers more anxiety and then triggers more CPV’s. Definitely not fun for her or us, since we can only kind of stand around and offer support. It sort of compounds on top of all the COVIDemic stuff…she’s taking to not watching the news or certain shows because it does ratchet up the anxiety.
We did go for a drive, and we did get to talk to April for a bit and that really helped. After that she (we) realized she will be needing some help with anxiety stuff, so we’re researching those possibilities. Plus, she will be needing something to distract her during this: craft? hobby? online class? Something.
Better update:
Her strength and energy continues to improve. She’s going outside, and we’re planning on driving around and car visiting with folks. Her abdomen is still sore but at least she’s walking around upright as opposed to bent over. On a call with DRG this week, DRG told her to take it easier. She did some of that with some of John Hughe’s movie selections. “We’re,” gearing up to start doing yard stuff and I did find a birds nest out in the front yard. It will be fun to keep an eye on the eggs and chicks.
Last night we went and car visited over at McMahonistan and talked with those crazy cats. That was nice and offered a glimpse at normalcy. Maybe I should get a boombox and we can listen to music and drink, or I can watch Keith and Sara drink if I’m driving… well, I can have Fionn drive then I can imbibe.
She appreciates all the support and well wishes so keep them coming!
PS: I’ll try and start getting some more pictures if she’s willing.
April 6 - Update Cadence
Hey Everyone!
The update cadence will probably be a little slower. As Colleen gets her strength back up, she will probably start reaching out to a wider circle of people. In the meantime I will continue to post here with anecdotes about recovery and her status:
She’s eating more every day, and getting more of an appetite for a wider range of foods.
She’s more mobile for sure, but still moving slowly.
Colleen’s tired of being in bed and on the couch, but she’s kept up on the all the happenings at the Bronx Zoo, and trying not to get to overwhelmed with Global Pandemic 2020.
Like I said in a previous post: she’s started laughing so that’s good. I don’t think she feels like she is fading anymore.
Her color has come back and that’s reassuring!
If you have any audiobook suggestions, post them here.
Thanks everyone!
April 1/2 - Taking It Slow
This might come late for a few folks. It’s definitely slow going, she’s still feeling very weak. She is moving around, and she did get to take a shower. We’ve been negotiating how to arrange the right combo of pillows in bed and on the couch. I even got one of the pillow wedges from Sara (Carmer…McMahon…yes and). We’ve also been using the baby monitor we got for Fionn when he was super sick.
In less domestic news we heard from the surgeon:
The surgeon checked in today. He said that of the 22 lymph nodes they took out, 2 had cancer in them. He also said that the margins were really good. So, she will have to have some chemo for her to be considered “cured.”
She’s still feeling super weak, but Dr Pietro said that at first she will probably lose weight but to keep nibbling and she’ll feel better each day.
We’ll find out in a week or so about the chemo in the follow up with her first surgeon.
As far as the margins go: of the 22 lymph nodes around the tumor, only the two closest had cancer in them.
Good news? Yes. The best news, no. But still a great prognosis.
Only forward!
March 30 (March 29) - Update
Small update: The nurse called after 9 last night, and said that the CT scan came back and there was nothing to see. Looked good. So that’s good news. I’m sure I’ll hear more today.
Thanks for all the positive energy, notes, and wishes.
March 24 - It's My Fault...
Hey, it’s my fault if I gave the impression that you can’t reach out to Colleen: you all can send messages directly wishing her well. She just doesn’t want the dreaded, “How are you doing?,” question.
Stuff like: “You got this!' “Wishing you well.” “ Yer tough, you can do it!” She really appreciates it.
Thanks!
Steve
Find her on Facebook, email: leenmg@gmail.com, or 206 618 5170
March 19 - "Quick" trip to Bellingham
Good news. Even though her surgery was postponed/canceled here in Seattle. Colleen’s doctor referred her to the hospital in Bellingham. We (Colleen, Fionn, and I) drove up today to meet the surgeon. It was a good meeting, the doctor felt relaxed and reassuring. Bonus: he will use a robot to do the surgery. Using a robot makes the actual surgery longer, but it reduces any recovery complications. With some helpful visuals, he laid out exactly what he will do, and how it works.
Friday (the 27th), mid-day is when the surgery is scheduled. So even though we’re (she especially) nervous it will be postponed again (it is possible…), the surgeon felt it was highly unlikely that it would be canceled. Fingers crossed!
After the appointment we drove over to a beach August told us about: Locust beach. We enjoyed some socially distant sunshine, picked up some agates, and threw rocks at posts. Then back in the car and returned home.
March 14-Postponement, Some Additional Details.
Transcribed from Colleen, She says:
I can wait a little bit without it threatening the outcome. The surgeon said that in situations like this that it’s the psychological part, not the physical part.
The surgeon also said that if it continues (not being able to do surgery here in Seattle), the surgeon is going to look for other hospitals to do the surgery,
Extra tidbit:
My case went to a review board; of the hundreds of cases under review, only 4 were approved for surgery, as they were life-threatening blockages.