The Colon Club

You have a lovely weekend . A lot coming up but it all sounds very positive ,
Take care ,
Stu

I am in LA now and so bloated and gassy. My stomach looked like I was pregnant last night. I was up all night going to the bathroom! It seems a little better today and I'm not as uncomfortable.

Bloating and gas was my first sign of typhlitis so this got me a little nervous. But then I thought about what I had eaten past few days: curry chicken on cauliflower rice, cheese platter on my flight, burrata cheese at dinner, fish tacos that had plenty of cabbage and deep fried cauliflower and chickpea curry at dinner. So maybe I just taxed my system beyond it's capability. Going to focus on easier to digest stuff today and hope that helps.

Group dinner tonight at Nobu Malibu - wah, I'll miss the sushi, which I love! But they have a good selection of cooked things - plus a view of the ocean, so I'll make the best of it. ; )

Heading to Eggslut this morning for an egg sandwich. Hope that's easy to digest! Still trying to pack on calories while my appetite holds.

When I got to chemo today, I was still a little bloated and mentioned my bloating this weekend. The doctor said it seemed like normal GI side effects, but she heard a slightly higher pitch in my belly, so she sent me for an X-ray before treatment just to make sure the infection I had previously had not returned.

Thankfully that was all clear, and I am hooked up for chemo now.

With a plan semi-outlined for the next few months, I can tell I am a little anxious about anything that would take us off course.

The team here at Northwestern seems REALLY excited about the fact that I'm working with MSK to get the pump. At my check-in today, my RN told me that she had spent a year on Kemeny's nursing team. She was the one who fielded my initial written request for a consult on MyChart, and told me that she was impressed / surprised that I had done the research and was forceful about pursuing it. Apparently most patients are not. She reached out to her old nursing contacts there to confirm I would be a candidate and they confirmed they thought so and would look out for me.

Overall, she said, "I just wanted to encourage you and tell you I think this is absolutely the right path for you. Dr Kemeny is a genius, she's assembled an amazing team, and you will be in great hands."

She also mentioned that she was surprised NW isn't more aggressive with their pump program. When she asked the lead oncologist here why that is, the answer is that patients aren't pushing for it. I think my doctor here is amazing, and I hope my results might inspire her to lead the charge here in the Midwest to develop a more comprehensive program. It is still boggling my mind a little bit that the pump hasn't progressed to be standard of care. And honestly - what a crazy data point that reinforces that patients need to be driving their own care. Patients aren't pushing for it - wouldn't you think the doctors would?? I think my doctor is the kind of doctor who will.

ginabeewell wrote:When I got to chemo today, I was still a little bloated and mentioned my bloating this weekend. The doctor said it seemed like normal GI side effects, but she heard a slightly higher pitch in my belly, so she sent me for an X-ray before treatment just to make sure the infection I had previously had not returned.

Thankfully that was all clear, and I am hooked up for chemo now.

With a plan semi-outlined for the next few months, I can tell I am a little anxious about anything that would take us off course.

The team here at Northwestern seems REALLY excited about the fact that I'm working with MSK to get the pump. At my check-in today, my RN told me that she had spent a year on Kemeny's nursing team. She was the one who fielded my initial written request for a consult on MyChart, and told me that she was impressed / surprised that I had done the research and was forceful about pursuing it. Apparently most patients are not. She reached out to her old nursing contacts there to confirm I would be a candidate and they confirmed they thought so and would look out for me.

Overall, she said, "I just wanted to encourage you and tell you I think this is absolutely the right path for you. Dr Kemeny is a genius, she's assembled an amazing team, and you will be in great hands."

She also mentioned that she was surprised NW isn't more aggressive with their pump program. When she asked the lead oncologist here why that is, the answer is that patients aren't pushing for it. I think my doctor here is amazing, and I hope my results might inspire her to lead the charge here in the Midwest to develop a more comprehensive program. It is still boggling my mind a little bit that the pump hasn't progressed to be standard of care. And honestly - what a crazy data point that reinforces that patients need to be driving their own care. Patients aren't pushing for it - wouldn't you think the doctors would?? I think my doctor is the kind of doctor who will.

Ginabeewell, I think you are saying a lot of ‘making sense ‘ here! Really odd that they are expecting patients to drive/to demand specific treatments!
I am happy to see that there is a HAI trial in Europe now.

Checking in from MSK today!

Weather in Chicago was bad last night so we were biting our fingernails but luckily we made it standby on an earlier flight. Our original flight did finally depart but landed at 3 am!

We've had a CT scan and consults with Kemeny and Kingham. Waiting on an MRI they squeezed me in for, as well - Kingham is trying to decide wherther he can do a single resection with a pump placement or whether that would require too much removal of the liver. There are a number of spots on the liver and he says he cannot tell what they are from the CT scan. And even then, one of the mets is close enough to the vein that there is a question about whether they would need to do two surgeries vs one. The truth is, we may not know for sure until he is operating.

We will have a pre-surgical consult with Kingham and Dr Patu, the colorectal surgeon, on March 11.

Surgery would be week of March 25, Tues or Wed. Which is perfect because the kids have spring break that week. We could bring everyone out weekend prior and have a NY adventure. And then my MIL could watch them once I'm at the hospital, with my husband staying nearby.

I'm guessing I will be in the hospital for 7 days and several people suggested I may not want to fly home right away. Luckily the kids (7-15) are comfortable fliers, and we could send them home to their other parents at the end of the week without us.

Any advice on how long I should mentally prepare to be at the hospital / recovering in New York would be appreciated! How long will I be down for the count / what's realistic timing to be checking back into work? I would love to give my boss a sense of what to expect from me sooner vs later.

Sounds like you’re in good hands, I had 2 planned liver resections due to multiple mets, they took about 30% the first time and around 70% the second spaced about 4 months apart. The recoveries weren’t crazy hard, sore and tired, I was fully open and not having a core was hard, wear a support brace! I felt about 75% within a few weeks, in fact, I was able to do most activities within that time. The colostomy surgery however, is a 9/10 of difficulty in life changing and recovery. I never had a pump, and everyone’s recovery is different.

Pyro wrote:Sounds like you’re in good hands, I had 2 planned liver resections due to multiple mets, they took about 30% the first time and around 70% the second spaced about 4 months apart. The recoveries weren’t crazy hard, sore and tired, I was fully open and not having a core was hard, wear a support brace! I felt about 75% within a few weeks, in fact, I was able to do most activities within that time. The colostomy surgery however, is a 9/10 of difficulty in life changing and recovery. I never had a pump, and everyone’s recovery is different.

Can you tell me more about your colostomy recovery?

That seems like definitely something I will be facing in the first surgery. I didn't realize the recovery for that could be worse than from the liver. So far my oncologist has made it sound like the liver is the big thing and the colon no big deal; but I'm sure that's from a surgical difficulty perspective and not a patient recovery perspective!

It was my third open surgery, I’m sure that had a lot to do with it, my core is pretty much gone. I also jumped into chemo after surgery, so that set me back as well. The scars hurt, the hernias are distressing (plus unsightly) and with everything jumbled up in there now,pooping is just strange. Along with the stoma, the surgeons had to fill the “hole” that was left in my anus area, they used ab muscles, so even less core. You can imagine with all of the re arranging there is scar tissue, that is painful as well.
Everyone is different, and your results will vary.

Pyro wrote:It was my third open surgery, I’m sure that had a lot to do with it, my core is pretty much gone. I also jumped into chemo after surgery, so that set me back as well. The scars hurt, the hernias are distressing (plus unsightly) and with everything jumbled up in there now,pooping is just strange. Along with the stoma, the surgeons had to fill the “hole” that was left in my anus area, they used ab muscles, so even less core. You can imagine with all of the re arranging there is scar tissue, that is painful as well.
Everyone is different, and your results will vary.

Thanks that is really helpful. We have a consult with the colorectal surgeon on 3/11, so hopefully he will be able to better prepare us for what to expect in my case specifically. This all makes me feel like I really need to commit to doing some strengthening before the surgery. Gotta get on that... I'm so bad at prioritizing working out with all else that's going on. Always have been and I guess cancer hasn't changed that!

Kemeny was surprised that Stein had me on steroids and wanted to wean me off. Today is day one at a reduced dose. I had a late night last night coming back from NY, but man I am really feeling crushed today. In bed by 8 pm. Hope tomorrow is better and I don't find out the steroids are why I've been feeling so good after my chemo break...

Steroids suck, I turn into a monster that doesn’t sleep. I avoid them at all costs.

Been a rough week or so.

After Kemeny gave me direction to taper steroids - but no actual schedule - I tried to do it myself and absolutely crashed on day five when I decided I was ready for no steroids. Got sleepy at noon and basically slept for 8 hours straight with a short break for dinner. Yikes! My local care team said I definitely went too fast and adjusted my taper schedule.

Then on Monday, for the first time I didn't get cleared for chemo. My platelet levels were too low! I know levels can hold up treatment, but mine have been so consistent for so many rounds, this came as a surprise, and I was worried it would put my surgery timing at risk. I started drinking juices that were supposed to boost platelet count like a maniac. Had a very stressful work trip on Mon/Tues so that didn't help my general emotional state!!

They will check me tomorrow (Thurs) and hopefully I will be cleared for treatment.

If not, at least I know it won't impact surgery timing.

Dr Kingham called today to review the results of my MRI. He said he thinks we need to do two surgeries vs one. He can't tell where there is enough healthy liver to do a resection now, because although the tumors have reduced in size, they are still spread throughout the liver. So he wants us to do colon resection / pump placement on March 27, and then a liver resection after the pump has given me three months of chemo.

And we discussed what happens if I don't qualify for treatment tomorrow, and he said he did not want to delay surgery and I should just skip it. That's a relief for the planner in me - especially since 3/27 is the kids spring break and all those plans to have a few days in NY as tourists with them would be down the drain if the date had shifted.

I guess in truth the planner in me feels like better to know that I need two surgeries now versus finding out the day I am on the operating table. But still kind of bummed that it can't all happen at once. There is such an urge to just GET IT OUT.

In the category of crazy good news, an executive at my company asked me over dinner the other night where we planned to stay in NY. When he heard a hotel, he said wait right here, I'm getting you keys to my parents' three bedroom loft on the lower East Side. It's a straight shot up to MSK but more importantly it sounds like an AMAZING place for us to be with our kids (and post surgery, with my husband and mom) while we are in NY. This exec doesn't even know me well, but he's a peer of my CEO and knows her very well. I was overwhelmed by that gesture and still can't quite believe it.

LPL wrote:Ginabeewell, I think you are saying a lot of ‘making sense ‘ here! Really odd that they are expecting patients to drive/to demand specific treatments!
I am happy to see that there is a HAI trial in Europe now.

If I'm not mistaken, the French are doing the HAI pump. I read about two people who got it here. The first one in Baujon Hospital (sorry for the spelling) and the second in Gustave Roussy.

@Ginabeewell: I'm so glad things are working out for you! Lots of positive thoughts for your surgery!

My platelets went up - by 2. Drinking all that carrot / beet / kale / spinach / orange juice must not have helped too much. So I didn't clear for my last chemo treatment.

Per Dr Kingham, don't want to push back surgery, and that last chemo less critical now that they want to hold on the liver resection. (He called the other day to confirm he wants to do HAI pump placement and colon first, and then the resection. I can't remember if I updated that.)

So here starts another 4 week chemo break leading up to 3/27 surgery. Trying to make plans to enjoy it. Eat some sushi once chemo has cleared my system and drink some wine before it's off limits with the pump installed!

Traveling to Costa Rica for a work offsite next week, so hopefully that will get me off to a strong start.

I think that the only thing that really brings platelets up is giving the marrow more time to produce them.

BTW, where is your colon primary tumor? Sounds like possibly the right side?

I don't have much to contribute in terms of helping with all the unknowns but just wanted to wish you good luck. You are being proactive against something that mostly allows reactive responses and I'm sure your body (or your platelets) will catch up soon!