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!”
October 28 - Chemo is done!
Chemo done!
Colleen, Leslie, and Simon walking through Lincoln Park.
Check it out, Colleen is done with Chemo! Today Colleen dropped off her pump and rang the bell to signal that her chemo is complete. It wasn’t easy or enjoyable, but she completed all 12!
October 9 - Only 2 more infusions to go!
A nice walk in Lincoln Park.
HOLY SHIT it’s been a while! Here’s a breakdown of the last few weeks:
No big platelet drops, which means she doesn’t have to skip any weeks.
Generally in good spirits with good energy.
Gaining weight, and has an appetite.
Reduced the amount of anti-nausea drugs she needed to take, which in turn helps with sleep; I don’t have to wake her up at 1 or 2 in the morning to take anything.
Plus going on walks and getting around more.
One not so good thing is that her neuropathy increased significantly. She’s feeling it in her feet, a little in her face, and tongue. Her doctor gave her some suggestions that might mitigate it, but hopefully, it won’t be a long term or permanent side-effect of the chemo.
She’s also definitely ready for this to be over.
Her next infusion is the 12th of October, then after that one, only 1 more infusion to go ( October 26th)! Yay!
September 3
Bob’s truck.
Hey everyone, time for an (admittedly overdue) update! I figured doing it this way would be a bit more efficient.
| Week | Status | ||
|---|---|---|---|
| --- | |||
| 3-9 | - | Her platelet numbers were great! The week off really helped. They did tweak the infusion slightly, but she had a hard week emotionally. | |
| --- | |||
| 10-16 | - | Recovery week! Solid with more energy and appetite. | |
| --- | |||
| 17-23 | - | Infusion week. This week was so much different than all the other infusion weeks. Her energy and mood were really good. She even had an appetite. The changes to her infusion seemed to really make a difference. | |
| --- | |||
| 24-30 | - | Recovery week. Walks, appetite, energy. | |
| --- | |||
| 31-6 | - | Infusion week. She had some weight gain, definitely a good thing. Platelets down but still in a range that she can have the infusion. not as good as the 17th, still not as punishing as previous weeks. |
With this infusion I think she only has 4 more to go!
July 30
A little summer color.
Summer color
It’s been a few weeks since the last post. Normally this would be a chemo-week, but her platelets were down so she has to wait to find out if her infusion will happen next Monday. It’s both a good and a bad thing: Good because she gets another week to feel better, gain some weight, and get some energy. Bad because then it pushes the process out further. The infusion nurse did say that this normal and it happens all time. All the other stuff looked good, they are just giving her marrow a break from modern chemistry to get stuff back in order…or at least better.
In the meantime, we’ve been busy doing yard work. Plus, Fionn and I cleaned out the garage so that he can do even more work on his engine swap project. Also, I mean honestly, the garage needed a thorough purging.
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July 8 - Chemo Update IV
Chemo week fatigue.
Last week was chemo week, this week is recovery week. As you all know, chemo week is tough. Just overwhelming fatigue. In medical news she has been getting shots of Granix to increase her platelet count.She starting feeling normal-ish Sunday-Monday. Meanwhile Fionn is busy with his engine swap, and Áine is occupied with sewing and cosplay crafting.
During recovery week, one of the big things Colleen has been doing is getting the kittens and the dog more used to each other. Simon is definitely interested, luckily though not aggressive. Both cats are definitely more or less cautious, but they for most part don’t seem to be threatened, they just don’t particularly like getting their personal space invaded by this other four legged animal.
This weekend she also decided to tune her Marinol with a more natural THC product. Hopefully it will it make next weeks chemo a less miserable experience. I will keep y’all posted.
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:
June 7 - Chemo Update II
Tough week, ending on an up note.
Hello all! It’s been a couple of weeks since the last post, but it’s that time again. The week of the 27, was pretty uneventful, however, Colleen was starting to feel a combo of trepidation and ready to get on with it. On Monday the 1st she went in for her infusion. Plus she returned with a little pump buddy.
Infusion buddy.
The first few days were ok and she definitely felt off. Unfortunately, after returning the pump, she really started feeling the effects of the chemo. So the remainder of the week she wasn’t feeling very good at all. While she didn’t have the super devastating nausea from the first round with the oral, she was definitely miserable. She had overlapping timing with different meds. Even at though at first the Marinol seemed to make her a little more chipper, but I’m not sure if we know which med is helping or not (after returning the pump). This week she gets a bit of a reprieve and we’ll see next week if her reaction will be less intense. Fingers crossed!
Today we had a nice trip to beach and walked around a bit, another indicator that’s she’s feeling better.
May 26 - Something's Moving!
Something seems to be moving around!
Over the weekend, the tube from Colleen's pot-a-catheter started flipping back and forth under her skin when she moved her neck. She met with her surgeon this morning, and he ordered a chest x-ray, The results showed that the catheter is in a good position with plenty of tubing still in her heart, but has come out enough to cause a loop where it enters her jugular.
At this point, it isn't a problem because there aren't any crimps that will cause a flow issue when she gets her chemotherapy infusion next week. She will need to return to the surgeon if she gets any swelling, or if the loop in the tubing gets bigger. The surgeon wants to make sure that it doesn't slip out of her heart. In the unlikelihood of that happening, it's an easy fix with a port revision surgery. Colleen doesn't feel worried about it, it’s just kind of irritating, and more of a , “Really? One more thing…”
Well that doesn’t seem right…
Now for something nicer:
May 18 - Taking It Easy
A good week, some nice days.
Good day for a beach walk
Hello all! For the most part, the last week has been going well. Colleen’s feeling better after the whole chemo thing and she’s gone out a couple of times for walks on a small pocket beach that Fionn found. Fresh air, sunshine, and the Sound. We did the big zoom call for August’s birthday, that was pretty awesome. It was great seeing all your faces. In addition, Colleen made a fantastic coffee cake. That’s a good sign, usually, when you don’t feel well, you don’t bake.
This week we will work on getting and starting the supplements so that when the chemo starts up, she will be ahead of the curve.
May 12 - Chemo Update
Just a small little update
Enjoying some of the sun with Simon
Hey all,
As you know the oral chemo didn’t go well and Colleen’s made the decision to go with IV infusion. Initially it was little disappointing, but to my point in the last post, it’s a quality of life issue. She also met with an Oncology Naturopath that offered a set of nutritional guidelines while she’s on chemo. In addition we visited a dispensary so that she could get some CBD and THC tinctures to help with Nausea and Appetite.
May 7 - Rough Start
Chemo planning going forward after a rough day and night.
View from the infusion room
Aside from the oral chemo delivery mixup, the infusion went well. Unfortunately the oral chemo didn’t go as planned. Early Tuesday morning, early early, Colleen was vomiting and experiencing intense nausea, to the point that she felt like she couldn’t get air in or felt claustrophobic. She had to hang her head outside and get fresh air before going back to bed.
From that point we started her anti-nausea regimen (Zofran & Compazine) to hopefully counteract the feeling. It kind of helped in that she wasn’t doing any vomiting, but she had no appetite and was miserable for most of the day and into the early evening. We called Dr. Hu’s office and the nurse(?) Gordon recommended that she take Ativan, but in half doses, and to not take the Compazine. The Ativan definitely helped and she was able to get some sleep.
The leapfrogging medication schedule
This morning we went to the PolyClinic Infusion Center where she got infused some fluids and a stronger anti-nausea medication. There she talked with Dr. Hu, Colleen has to make a decision around continuing with oral or going with straight infusion. Tomorrow I think will decide it, key factors :
She needs to have eat and have full meal
Frontload with Zofran about an hour before taking the chemo
Reduce the number of oral chemo pills from 3 to 2
My comment is that this may become a quality of life issue. As much of a bummer it would be to do chemo for 6 months vs 3, at least she wouldn’t be totally miserable for up to two weeks of every month of the next 3. Fingers crossed that tomorrow will have a better result, but at the least she has options.
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 10 - 2 Week - Post Surgery Follow Up
Today Colleen had a follow-up call with her original Doctor (Gladstone), the 2-week, post-surgery, check-in:
For colon cancer, it’s not the size but the depth and Colleen’s depth was T1 (The cancer has grown through the mucosa into the submucosa, I got that from some online research). She (Dr.Gladstone / DRG) said that it was smart that Colleen went to get her surgery, if she had waited longer for it to happen in Seattle the future prognosis wouldn’t have been as good.
DRG recommended an oncologist at PolyClinic that she’s works with and that she really likes. And she already contacted that doctor, to see if she could fit Colleen in, and she confirmed that she could. Plus if she has to go in, it’s right off the freeway not at the hospital, hopefully reducing any COVID risks.
Chemo needs to happen within one month of surgery, and she may start in about a week. Though both DRG or Colleen isn’t sure if it will be oral or ported.
The chance of recurrence is high without chemo.
She needs at least another month of no lifting, and the exercise she can do is just walking. So no Yoga…or deadlifts. At the 6-week post-surgery check-in, she and DRG will talk about exercise options.
In other less medicaley news. Colleen continues to get stronger and feel better every day. She walks slowly and seems a little bent at the waist at times, but mostly is good. Keep the good thoughts coming!
I’ll update after the meeting with the oncologist. Cheers!
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!
