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I got my chemo curls in 2020 *

Posted: Fri Jan 01, 2021 8:03 pm
by mobrouser
They showed up in March, 18 months after finishing chemo. It was a surprise.
Our family has been so very lucky, we are all still working and no-one has tested positive. Our social lives have been very quiet but then again I didn't mind not having to get together with the in-laws. They probably feel the same about me. :roll: :P

Happy New Year all, and strength on the journey.

Re: I got my chemo curls in 2020 *

Posted: Sat Jan 02, 2021 4:11 am
by stu
:D Your post made me laugh . Enjoy the curls !
2020 has had a few benefits too!

Happy New Year to you and your family ,
Stu

And a liver resection in 2021

Posted: Sun Jan 02, 2022 9:18 pm
by mobrouser
Fast forward from January 1, 2020….
March 2020 CEA 2.7.

August 2020 - scan shows new lesions in the right lobe of the liver so an MRI was scheduled.
Sept 2020 CEA 2.9

Sept 2020 MRI was not definitive other than to confirm there were new spots on the liver that had not been seen before. Oncologist tells me they could be cysts, hemangioma, or metastases. All were under 1 cm so it was decided to wait and have a repeat MRI in March 2021.

April 2021 CEA 3.3

MRI April 2021 showed growth in one lesion from 0.5 cm to 1.5 cm, the other two were unchanged. This was the prompt for me to start the Covid vax process, as it was obvious that something had hit the fan.
Biopsy May 2021 confirmed met in section 8 with ultrasound showing growth to 1.9 cm.
Phone consult with liver surgeon’s team followed by an in-clinic consult with the surgeon in June. Liver resection was scheduled for Monday, July 12, 2021 and the surgeon also requested a colonoscopy be done prior to resection. The only day it could be scheduled was July 9th. Colonoscopy was clear.

Plan for resection was to start laparoscopic, with the possibility of going to open. No anticipation of follow up chemo, as surgery should remove all cancer. I volunteered to participate in the HeLiX (Hemorrage During Liver Resection: traneXamic Acid) https://webapps.cihr-irsc.gc.ca/cris/detail_e?pResearchId=9345869&p_version=CRIS&p_language=E&p_session_id=1333597 trial. My two previous surgeries required transfusions during surgery so I am a good guinea pig…

I woke up in the ICU and could tell by the pain that I’d had open resection. I really didn’t want to lose my gall bladder. Spent the night in ICU and moved to a regular bed on Tuesday. I could picture Ginabeewell’s avatar in my head as I remembered her encouragement to all here to start walking asap after surgery. So I did. Thanks Gina! I also thought about Stu’s Mum and her recovery from losing such a large portion of her liver. Thanks Stu!
Pathology had tumour at 2.2 cm. Home on Friday, but by Sunday I could tell something wasn’t right. Several set backs over the next 2 months included a 25lb weight loss, a partially collapsed lung due to pleural effusion, and 7 weeks with a drain to relieve a bile leak. But by October 1 I was somewhat back to normal.

November 2021 CEA 2.0
Scan on December 10th shows that there is still a small collection of bile in the abdomen, and the lung has not reinflated. I’m not surprised as I still don’t feel the same as pre surgery.

Reflections after all this:
Do not have a colonoscopy three days before major surgery. I was not as strong as I should have been going in to the resection. Not likely to have been the cause of my issues, but it didn’t help. Talk to the anaesthesiologist prior to surgery. I did. We reviewed my experiences after my colon resection and came up with a plan for how my arms were to be placed so that I had no stiffness when I woke up. Extra care for eyes as well so that I didn’t wake up with dry eyes. According to the surgical notes I lost almost 1.5 litres of blood during surgery. I’m going to guess that I got the placebo in the HeLiX trial. I’ll find out in another two years or so.

Most importantly, the 15+ years of experiences shared on this board are so appreciated. Thanks to everyone who has spent the time to share their histories and comments.

Happy New Year all, and strength on the journey.

Re: I got my chemo curls in 2020 *

Posted: Sun Jan 02, 2022 11:45 pm
by ginabeewell
Thanks for the update - although I groaned several times on reading it, remembering how fun it is to deal with fun like that - I feel like I had quite a few of your same complications during my last surgery.

And a big thanks for your walking call out, I had no idea how much I needed that until I saw it and it changed my whole mood. I have scans on Tuesday - I’m supposed to fly tomorrow, but a PCR confirmed I have Covid after several days of symptoms. So I’m sitting her in a mix of feeling sick, tired, scanxiety, and everything else.

Most days I can stay positive, but after a few days of feeling sick again I really really want to stay well!!!

Sorry for that tangent, but hopefully underscored the impact of your post.

Have you learned to deal with your chemo curls yet? Today I tried to dry mine straight, because they are only half curly. Suffice to say that was a mistake which didn’t exactly help my current mood..! That said, I fell onto a Curly Girl Method group on Facebook and I may be moderately obsessed.

Re: I got my chemo curls in 2020 *

Posted: Mon Jan 03, 2022 12:35 am
by roadrunner
Great good luck to you both, and may this new year give you strength and health!

Gina: I hope you get through the COVID rapidly and unscathed. I feel sure you will. Made me think of a corollary to my injunction to my kids (“Don’t get cancer!”): “Don’t get cancer, but if you do, don’t get cancer during a pandemic.” Ah, well. Looks like we all blew that. As I said, sending strength your way!

Re: I got my chemo curls in 2020 *

Posted: Tue Jan 04, 2022 4:15 am
by stu
Hi ,
Sorry to read you had to have more surgery . That was a bump on the road for sure but so pleased to hear you were able to use the experience of others to motivate you through .
I used to have people in my mind that gave me direction and in turn passed that onto mum . In fact it was someone here who talked me through the whole lung surgery aspect . The power of sharing on a forum .

Hope you are well on your road to full recovery .
Take special care ,
Stu

Re: I got my chemo curls in 2020 *

Posted: Tue Jan 04, 2022 3:05 pm
by boxhill
Wishing you a less eventful year ahead. Medically, that is! Just nice, calm, painfree healing.

And good hair days galore!

Re: I got my chemo curls in 2020 *

Posted: Wed Jan 12, 2022 9:56 pm
by mobrouser
Thank you everyone for the support. I had a phone appointment with the liver surgeon last week to review December's scan which has left me feeling somewhat disappointed. Liver has recovered nicely, no sign of new stuff, but I am still struggling with the lung issue which does not seem to interest her. So I guess I will have to make an appointment with my GP.

My hair is a mess, but that's for another post...

Gina, how are you doing? I hope you have recovered and are on your daily walks.

Take care everyone.

mob 8)

Re: I got my chemo curls in 2020 *

Posted: Fri Jan 14, 2022 7:49 pm
by bitchslapped
Wow, Mob, you've sure had a time of it. Sorry to read this. Sounds like it's time to bring a pulmonary specialist onboard.
And that bile needs some place to go, btw. What is the plan to keep an eye on that? Any talk of possible stent if bile continues to build up? Consider a top-notch gastro doc w/hepatic focus & possibly a doc of infectious disease might be added to your short list. Don't wait for these doctors...PUSH. Backed up bile can be a recipe for infection-in-waiting.

As far as the hair...that's what clips are for & call it good :wink: :D


Best Wishes

BS

Re: I got my chemo curls in 2020 *

Posted: Mon Feb 21, 2022 9:19 pm
by mobrouser
Thanks BS for the comments. It was both husband and step-son in your family with liver mets as I recall?
The drain was put in in three weeks after surgery and removed eight weeks later. Output dropped off abruptly in that last week so I am (for now) comfortable that if there is any leakage it is being reabsorbed as the surgeon suggested it would. I am scheduled for another scan mid March which will be looking first and foremost for any sign of further mets and for resolution of the lung and bile issues. To be honest I am more concerned about the lung right now than anything else. They did send me to a pulmonary specialist who drained the lung. I have a relatively high pain tolerance but that was not a pleasant experience. However, I am winded after going up only two flights of stairs so I know that things are still not normal.

Just a warning to anyone with a bile drain, no matter how much you want to get rid of the drain or how bored you are sitting around the house with the bag strapped to your thigh, do not, I repeat, do not squeeze the line hoping to move the bile out faster. I did and thought “ooooh look it’s moving faster into the bag, I should keep squeezing here” Next thing you know the line was filling up with blood. So I sheepishly told hubby when he got home what I had done and said he should be prepared to take me to the hospital if it hadn’t stopped in the next 24 hours. Fortunately it stopped. I did not tell the surgeon....

mob 8)

p.s. Gina, we haven’t heard from you but I am anxious to hear how your scan went and your covid experience. Send us an update if you are up to sharing.

Re: I got my chemo curls in 2020 *

Posted: Mon Feb 21, 2022 10:57 pm
by ginabeewell
mobrouser wrote:p.s. Gina, we haven’t heard from you but I am anxious to hear how your scan went and your covid experience. Send us an update if you are up to sharing.


Sorry to leave you hanging! And totally laughing about your bile situation, that sounds exactly like something I would do. I had drains for months, and they were awful and leaky; I took to wearing maxi pads on my chest to keep myself dry. Just one more cancer indignity!

My scan showed shrinkage; it was too soon to see clear scans I guess, but between the progress and my CEA, everyone’s feeling ok so far. I’ll get my CEA again this week, have to confess I feel a bit nervous.

I’m feeling good health wise. Covid took me only about a week to get thru what felt like a cold, and a few more weeks of being a bit tired. I’m finally feeling like I’m past both Covid and radiation, trying to work out again or at least walk. This weekend I walked on Green Bay - it was frozen solid, and we braved it in the wind and cold!

Mostly my attention is on how to turn this experience into something valuable; and it feels like sooner or later I need to take my blog and turn it into a book as a first step to other things I would like to do. So spending time thinking about what I would really need to do with my life to make that feasible…

Re: I got my chemo curls in 2020 *

Posted: Wed Feb 23, 2022 2:44 pm
by bitchslapped
Thanks BS for the comments. It was both husband and step-son in your family with liver mets as I recall?


Yes, updated my signature. DSS had a stent in bile duct for drainage. Wasn't possible for DH so drainage tubes were placed post liver resection. Backed up bile, liver cysts developed into frequent infections resulting in sepsis a couple of times, which of course, is an emergency situation. Later on Infectious Disease doc would rotate antibiotics to keep them effective in managing infections. The surgeon performed a Roux-en-Y hepatico jejuno stomy used to treat (macroscopic) bile duct obstruction @ the time of liver resection in hopes to avoid the bile flow creating its own drainage channel, which did eventually happen.

Sounds like you're in good hands.

Best Wishes
BS

Re: I got my chemo curls in 2020 *

Posted: Sun Mar 20, 2022 2:28 pm
by mobrouser
I gave notice to my employer of 8+ years on the 9th. It has been a good job, nice people and I learned a lot about the industry while there. But it’s a 50 km trip each way and also over an hour each way even though I arrive and leave later than normal 9-5 to avoid rush hour traffic. New job is 10 minutes from home (I could walk if I wanted to) and in a completely new industry so I’ll still be learning. I start on Tuesday. Sounds great, doesn’t it?

Hubby was excited when I told him, it means he doesn’t have to make dinner anymore since I will be home before him now. Then I told him about the “what-ifs”. He’s not so excited anymore. I had been looking at jobs closer to home for awhile, but nothing ever came up that felt like I was meant to take it until now. I told hubby that if I put off taking the job because of the “what-ifs” I would regret it and that I needed to do this.

The kicker is that I have scans and blood work scheduled for tomorrow and meet with the oncologist to review on the 30th. (In person, for the first time in 2 years!!!) New employer obviously didn’t ask, and I didn’t offer any details on my medical history. What if it’s not good news on the 30th? What if they don’t want to support me if I have to go through more treatment? Old job were so very kind , didn’t pressure me through two surgeries, eight months of chemo, and numerous hours off for medical appointments. I have been so appreciative of their support. What if I’ve given all that up and end up losing the new job in a couple of months because of cancer?

I just got confirmation this weekend that I’ve done the right thing. My next-door neighbour died on Friday night of a heart attack. Just 50 years old. Life is too short to worry about the “what-ifs”.

8) mob

Re: I got my chemo curls in 2020 *

Posted: Sun Mar 20, 2022 3:53 pm
by MadMed
The hell with what-ifs :D I interviewed for a new job during chemo, 2 interviews were a day after infusion. Incredibly I got an offer and took it. I did tell my new manager that I was going to have chemoradiation my first week. He said no problem, we’ll do what you need. I’m still here, at the new job, my manager left the team :P
You do what works for you right now, later will take care of itself. It’s 2 hours of your life you get back every day! Worth it!
No one dares not supporting you. Everyone has been touched by cancer one way or another.