My CRC with liver mets journey

[ginabeewell]

Next Monday I get my pump flushed - and will be resuming systemic chemo for the first time since mid-February.

Some confusion ensued because MSK thought I was coming back there to do it - in spite of several notes to the contrary. Northwestern had Medtronic come in last week and train them on the new pump, and they'll be there on Monday again to oversee my flush.

I had been worrying about a shift to FOLFIRI, but Sandy just told me that Dr Kemeny wanted me to just do FUDR-5 and Vectibix for this round of systemic. No Oxy, no Iri. Huh, interesting. This does not seem consistent with what she's recommended for other patients, so I'm curious what is driving the recommendation. Perhaps she wants to see how well I tolerate these before reintroducing Oxy? I do know that she told me she wanted to spend time with my file before making a recommendation, so I am assuming her reco is based on what she read there!

I've been really worrying about moving to FOLFIRI. I had enough trouble with diarrhea on FOLFOX, and I'm still emotionally connected to my much-thinned hair if I'm being honest.

Also my husband - who has been out of town all week this week - forwarded me his travel schedule for the foreseeable future. He's basically on production until June 1, with only a handful of days back in town. And his ex-wife has already told us that she has a big case coming up and will be "unavailable" for most of May. Seriously, so now Cancer Girl is going to be the one responsible for four kids??

I have always prided myself on not being "that" nagging wife who gives him a hard time about travel like his first wife did. I know a certain amount of it is unavoidable, and he loves what he does. But frankly it's tough when he travels that much when I'm healthy! It's really hard for me to admit that I'm in a super vulnerable place, I'm feeling scared, and I just don't want him to be gone. I spent Monday and Tuesday crying at the drop of a hat. Like, I heated up leftovers at work and managed to spill most of my lunch as I took it out of the microwave - and burst out sobbing. One of the admins heard me and came in to rescue me, promising to clean up and offering to get me something else. So embarrassing, but I know I'm crying over the little stuff because the big stuff is too scary.

Thankfully I had therapy yesterday, and by then he had gone through the schedule and made some calls about doing a few things remotely from Chicago vs in LA. So I feel a little better. But I also think I need to develop some new "self-soothing" techniques - because my old method of pizza + wine + staying up late to watch Housewives on Bravo isn't compatible with cancer / chemo / the pump. I think I'm going to buy myself a nice candle and my husband already ordered three bottles of Seedlip, an "alcohol-free spirit" that can be used to make cocktails. Maybe these will help me to get into a better frame of mind when he's out of town.

He should get home tonight around 10 pm, and I am looking forward to having a relaxing weekend with him before a return to systemic chemo on Monday...

[Mohrfamily]

Its like I always tell Sean (which I'm sure still falls on deaf ears) of you don't speak up people can't even attempt to accommodate you whether they can or can't you don't know till its brought up.

You should never feel bad asking for a little slack I've come to realize myself that cancer is a battle that no one but you knows its intensity day in and day out. We as caregivers standing by need to be more understanding of that (which I occasionally forget and focus to much on tough love). I try not to baby my husband but try to remember he needs TLC too.

Chin up.

[ginabeewell]

Its like I always tell Sean (which I'm sure still falls on deaf ears) of you don't speak up people can't even attempt to accommodate you whether they can or can't you don't know till its brought up.

You should never feel bad asking for a little slack I've come to realize myself that cancer is a battle that no one but you knows its intensity day in and day out. We as caregivers standing by need to be more understanding of that (which I occasionally forget and focus to much on tough love). I try not to baby my husband but try to remember he needs TLC too.

Chin up.

I know you're right - and this sounds familiar! My caretaker is amazing but occasionally he veers too fully into the functional / making sure I'm taking my pills / taking walks / etc - and what I really need is more emotional support, which is tougher for him to do from afar where he can't read my signals. I need to get better at letting him know where I am emotionally, so when I'm in a bad place, he doesn't make the mistake of sending me photos via text of the amazing dinner he's having at Nobu Malibu or whatever! NOT HELPFUL.

Anyway! Yesterday I got my first pump flush at Northwestern. Piece of cake! They had the head nurse in the office do it. Apparently she used to access the Codman pump regularly, so this was just a slightly different experience for her. The Medtronic rep was there to oversee everything, and the nurse access the pump port like a pro - with less wiggling of the needle than the nurse at MSK had to do! They had a few additional nurses to observe, so I will always be covered. My experience definitely suggests that it should not be too difficult to get your local cancer center to flush the pump so long as they are willing to go through the training!

I'm on FOLFOX less the OXY plus Vectibix. So far so good. Dr Stein had not had a chance to connect get with Dr K so don't know if the plan is to continue on this regimen or resume FOLFOX or start FOLFIRI. Worst case I have an appointment with Dr K again on 5/6 and can ask then. Happily there is a luncheon scheduled in NY same day for my boss, and I got invited - which means my plane ticket at minimum will be work-funded. Yay!

[juliej]

I need to get better at letting him know where I am emotionally, so when I'm in a bad place, he doesn't make the mistake of sending me photos via text of the amazing dinner he's having at Nobu Malibu or whatever! NOT HELPFUL

Yes, you definitely need to be able to tell him where you're at emotionally. The first days after an infusion always left me in a bad place -- an unsettling combination of facing my own mortality combined with vulnerability and helplessness. Ugh. Lots of tears (which hurt like hell due to the oxaliplatin) and lots of angst.

The strange part was when friends texted me asking how I was doing I'd always reply "I'm staying strong" or words to that effect. I think I felt like I had to be positive for them, which meant I could only be fearful when I was alone. It took me awhile to get what I was doing. There's a difference between a genuine show of strength in the face of the unknown and just putting a "positive spin" on things so my loved ones don't have to worry. Asking for emotional support wasn't quite in my nature.

There's nothing wrong with thinking thoughts like "I’m going to beat this." Equally important, though, is giving yourself the permission and freedom to express just what a hard highway it is to getting there. It is very important to allow yourself to admit at times that you feel ill and scared and whatever else you feel and let someone take care of you.

Congrats on an easy first pump flush! Good job, Northwestern nurses! And I love that you got invited to a luncheon for your boss in NYC for the same day as your next appointment with Dr. K. -- very handy!

Juliej

[Pyro]

You’re an inspiration Gina, 4 kids while going through chemo??? I’ve had way to many “hiccups” and bad days to take on that kind of responsibility. It took my family a while, but they understand I’m sick and entrusting me with responsibility like that can/will end up causing them more problems when I end up on the couch unable to do anything. My wife just paid for rooms at the Phoenix Grand in May, non-refundable, I told her she’s playing with fire. At some point, everyone is going to have to accept you’re sick and life can’t go on like it used to, at least that is my experience.

[ginabeewell]

The strange part was when friends texted me asking how I was doing I'd always reply "I'm staying strong" or words to that effect. I think I felt like I had to be positive for them, which meant I could only be fearful when I was alone. It took me awhile to get what I was doing. There's a difference between a genuine show of strength in the face of the unknown and just putting a "positive spin" on things so my loved ones don't have to worry. Asking for emotional support wasn't quite in my nature.

There's nothing wrong with thinking thoughts like "I’m going to beat this." Equally important, though, is giving yourself the permission and freedom to express just what a hard highway it is to getting there. It is very important to allow yourself to admit at times that you feel ill and scared and whatever else you feel and let someone take care of you.

This is all wise counsel and rings true to me. So thank you for that!

On some level I feel like my cancer diagnosis is some kind of BRAND to be managed - maybe because my husband and I both work in advertising, and our Facebook group for me is called We Are All Made of Stars (inspired by my first request, which was for friends and family to visualize tiny stars nipping away at my cancer). And honestly, I have largely felt optimistic about things from the very beginning - so with rare exception, it's not an act. But it's weird how it almost turns into an obligation to maintain the positivity that people are praising you for. I rarely post anything dark - and when I do, it's nearly always with a positive turn at the end that talks about how I bounced past the low.

That said, I've been more honest about the sucky parts with closer friends and family. There are a few close friends to whom I know I can complain. And I do have a therapist, who assured me that having some lows makes me normal, that it would be impossible for me to maintain my optimism, and most importantly, that periods of lows aren't "signs" that this ultimately isn't going to work out for me.

This morning, my 7 year old son asked me, "Is having cancer hard?"

"Yes, it is hard," I told him.

"Well, you make it look easy!"

I had to smile a little bit at that. This is the same little boy who told me that it would be ok if I lost all my hair because "you could choose any hair you want!" and "you'd never get lice!" I guess perhaps optimism runs in the family.

[ginabeewell]

You’re an inspiration Gina, 4 kids while going through chemo??? I’ve had way to many “hiccups” and bad days to take on that kind of responsibility. It took my family a while, but they understand I’m sick and entrusting me with responsibility like that can/will end up causing them more problems when I end up on the couch unable to do anything. My wife just paid for rooms at the Phoenix Grand in May, non-refundable, I told her she’s playing with fire. At some point, everyone is going to have to accept you’re sick and life can’t go on like it used to, at least that is my experience.

Well, we are a blended family so we don't have four kids all the time. And we've made some pretty major changes - like, I used to make a big deal out of making dinner every single night they were here. Now we rely mostly on Meal Train meals that friends and neighbors deliver. We also hired a nanny 40 hours a week - more hours than we need given that we have school aged children, but we knew that it would give us some room to maneuver when needed, especially when my husband travels. And she's been amazing - that turned out to be a good investment!

I've been able to keep working too. Before my surgery I was working more than full-time and traveling almost every week. Now that I'm back my bosses are trying to keep my schedule a little more manageable, which I appreciate. But it makes me feel lazy. If I'm at home, I want to be in bed! And I feel like my tendency is to slack off when I'm not going a million miles a minute. I also feel guilty because I am in a high level position reporting directly to the CEO, and I get paid well. My husband reminds me that I have worked crazy hours for the 25 years I've been there - and I deserve to take a year to focus on myself. Easier said than done.

[kandj]

I've been able to keep working too. Before my surgery I was working more than full-time and traveling almost every week. Now that I'm back my bosses are trying to keep my schedule a little more manageable, which I appreciate. But it makes me feel lazy. If I'm at home, I want to be in bed! And I feel like my tendency is to slack off when I'm not going a million miles a minute. I also feel guilty because I am in a high level position reporting directly to the CEO, and I get paid well. My husband reminds me that I have worked crazy hours for the 25 years I've been there - and I deserve to take a year to focus on myself. Easier said than done.

Listen to your DH on that! I think if they have adopted that attitude at work as well, that shows a lot about what you mean to them as an employee. And my DH isn't the lazy type, but he spends more time laying in bed then before cancer. Chemo is exhausting and he spends a lot of his energy working. Make the room comfy and put a big TV in if you don't have one. Your kiddos can snuggle up with you and y'all can watch TV (or youtube videos of other people playing minecraft/fortnite if your kids are anything like mine. ). You are doing an amazing job and surviving, focus on that if you can. And accept those meal trains! I have always been a giver and fixer. I am the one to organize that stuff, first to sign up, etc. So when I had a dear friend organize one for our family when DH was diagnosed, I was so humbled and touched by the amount of people who signed up for ours. People want to give back and show the love you have shown them.

[ginabeewell]

I have always been a giver and fixer. I am the one to organize that stuff, first to sign up, etc.

Well, then maybe no surprise you are on this board lending support to cancer patients beyond your husband who need it!! Thank you so much, it's been a rough few days and the words from the kind and wise folks here really helped.

In therapy yesterday, I talked about one of the coping mechanisms I've employed - kind of negotiating with myself to keep my chin up. Like, "OK, you have three months of chemo until your next surgery. That's only three rounds of systemic chemo... the pump chemo isn't so bad, so it doesn't count... and your first round of chemo after a chemo break is a cinch, so it won't really count either..."

So imagine my reaction when this first round back to systemic kicked my ass. ESPECIALLY given that it had no Oxy in the mix, it should have been easy, I felt so cheated!

And my side effects hit early - on my disconnect day versus day 6 or 7 like it usually does.

I was confused but this morning realized I wasn't actually coming off a chemo break - quite the opposite, I'd had FUDR being pumped into my liver until just an hour or two before systemic. So I'm guessing the build-up of that had me hit a point where the concentration of chemo in my system just happened earlier? Or maybe it's that I am still healing from surgery.

Anyway, I had two really rough days on disconnect day and the day after - couldn't eat, etc. Then I woke up today feeling miraculously better. I didn't wake up hungry, but by 10 am I had an appetite and was able to eat an egg sandwich. And so far haven't had to dash to the bathroom...

My husband gets home late tonight, I will be so happy to have him back. But his kids have been really amazing the past few days - getting themselves dinner and cleaning up after, bringing me water and Gatorade and pills and just generally checking in on me. It makes me teary thinking about it. They have good hearts and are growing up to be such good kids.

[kandj]

It makes me teary thinking about it. They have good hearts and are growing up to be such good kids.

Sounds like a reflection of their home life. I am sorry you have been feeling so shitty. I don’t know if this will help, but I found DH always seemed to feel better post chemo if he got a bag or two of fluids at disconnect. He would go home and sleep the rest of the day. You have it tough needing to be mom and caregiver on top of it all. ❤️

[ginabeewell]

Here I am at MSK for my second pump fill. BUT... my liver enzymes were elevated so I didn’t qualify.

Also I thought I was alternating systemic and pump chemo but today it became clear I do systemic AND pump moving forward, so systemic every two weeks - with the pump every four weeks. Sigh.

They also want to keep me on the blood thinner shots. I thought that would be done after 30 days.

Now waiting to have my pump filled with saline and get systemic. I have that luncheon to attend in honor of my boss, so I’ll have to split my treatment and take a later flight back.

Le sigh.

[radnyc]

Not unusual, I had a couple of sessions postponed because of high liver enzymes, they watch them like hawks. They’ll come back to normal range and you can have the joy of chemo again!

[ginabeewell]

I qualified for pump treatment a little over two weeks ago. The systemic cycle prior had been pretty tough for me, which was unexpected since I was expecting easier cycles without the Oxi in the mix. I had diarrhea from day 3 to day 10, and Imodium / Lomotil were not enough to control it. So they decreased my dosage slightly of 5-FU and that made a major difference for me in the past two weeks.

I was lower energy days on my disconnect day and the day after, but by the weekend I was feeling as good as I have since diagnosis and spent the weekend cooking in my kitchen with the passion and energy I used to have. I made two batches of charred onion dip, four pizzas, twelve calzones. The almost 8 year old twins helped me, which was awesome. The following week was almost symptom-free. With the exception of the Vectibix which continues to do a number on my skin. (Last night my face felt like it was going to crack off and I had to smear Aquafor all over it!)

I had systemic treatment yesterday, so I've got my pump going today. My birthday is tomorrow. And we leave on Friday for a family trip to Sicily!! So I just called an energy healer to see if she can come over on Thursday to get me feeling good before I go. A friend with pancreatic cancer tried her last night and said she felt so much better after the session. Worth a shot! If all works out I can schedule that AND a pedicure!

I'm down about 5 lbs since late April, so it is perfect timing to head to the land of pizza and pasta for a week. I booked this villa at the end of December, when oncologists were all thinking I had 2 years to live, and I had just landed in the hospital with a chemo-related infection. It's big enough to hold our family, my sister's family and my parents - and I told them we would cover villa costs if they could get themselves there. The kids are all aged 3-16, and the advantage of this villa is that a cook will be there to make dinner each night, and breakfast every other day - so no having to schlepp kids around to restaurants while they are tired. I hope it will be an investment in an amazing memory for us all.

Also wanted to note that we let the Medtronic rep know that we were traveling, and he was great about making sure that he made some calls to determine who we should contact if I should run into any problems there, identifying a resource only about an hour from where we are staying. He also reprogrammed my device to give a warning once I hit a two day reserve, to ensure that we have time to do something about it if there are any issues at all. Really impressed with the time he is taking to ensure that patients in the Midwest get the support they need while hospitals are getting up to speed.

[Maggie Nell]

Happy birthday and when in Sicily, I hope you make time to visit
the Black Madonna at Tindari.

https://siciliangodmother.com/2012/11/0 ... f-tindari/

[Pyro]

I’ve been here a couple of times, cannot recommend it enough, it’s on the NE side of the island:
Taormina

https://en.m.wikipedia.org/wiki/Taormina