#chronic illness? probably? maybe? ive dealt with this for like 10 years so maybe? | Explore Tumblr Posts and Blogs

nettheworldonfire · 4 years

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Less Than.

It’s been awhile. Let’s catch you up to speed.

June 13th I had a CT scan that showed NO progression, and POSSIBLY necrosis on some of the tumors on my liver. (Necrosis = death, so yay!) Dr. Rose said that was as good as we could have hoped for and thought we should move forward with possible embolization through Penn since they seem to be the experts in NETs. He wasn’t sure if the clinical trial of chemo/bland embolization was running currently due to Covid, so he said I should reach out. I scheduled the consultation appointments, which were originally not until August, but got bumped to July 22nd.

My in-home phlebotomist was a no-call, no-show on the 30th, so I called my office and found out there was a mix up, and they were scheduled to come the same day as my injection, so I had to go to Labcorp in person. I was pretty anxious about that since we aren’t do to much real-worlding these days, and they may or may not be doing Covid testing there, but I mustered the courage, and went. There was only one person in the waiting room and only two employees, one of which dealt with me from beginning to end exclusively. Everyone was masked up; it was smooth and painless. (Shout out: I ALWAYS have a good experience at the Labcorp on Easton Road in Abington, near the hospital. They are rockstars!) Those results came back looking a-okay.

I had my 5th Lanreotide injection on July 2nd and met with a very stressed Dr. Rose who still may or may not be retiring, due to some major changes with the hospital. He said labs and scans were good, and to keep him posted about my appointments with the folks at Penn. Overall, I felt fine after the injection. My GI issues are still relatively prevalent after the Whipple, so I never know if what I am dealing with is “normal” or an issue. And right now, with you know, the world crumbling, it could just be stress.

So fast forward to the 21st, the day before my appointments, and I get a call that Penn doesn’t have the scan images or pathology report and that maybe we should reschedule my appointments (you know, the ones I’ve been waiting a month for). They said the problem with this was that the doctors like to look at them in advance. Although, a point I brought up to the nurse, I don’t see how much advance looking was going to be done after 6 pm the night before. So we rescheduled my 10:30 a.m. call with Dr. Soulen to 6 p.m. so there was time to review, in the hopes that SOMEHOW I could get both reports and images to their office between the call and the appointments. Without any other options, my gracious husband made the one hour drive, and carted them into Penn at 7 am on the 22nd. (Only to spend 20 minutes there looking for the building, since I was never told any information as to where the doctor was located with my appointment being through telehealth, and like a dummy, didn’t ask.) Images delivered, and I get a call at 9:45 ish saying Dr. Soulen is still calling me at 10:30 again (and now my mother, the child pacifier, won’t be here in time, since I told her to come later when the appointments were rescheduled).

My first call was with Dr. Michael Soulen in interventional radiology. I introduced him to the two-legged noise makers who would provide a classic toddler soundtrack, and he seemed pleasantly on board with the situation.

My mom did show up during the call just as things got hairy (Charlie had all the cushions off of the couch and my cat litter barricade was no longer stopping Olive from making a bee-line for the steps). Gram to the rescue, as per usual.

Dr. Soulen liked my June scan. He said it was great because that meant we didn’t HAVE to embolize (despite him mentioning several times how seeing a liver like mine makes him drool because of how much he enjoys embolizing livers). Dr. Soulen said that the treatment plan should be “to ride the horse until it gets tired” because we only have so many horses. Therefore, we stay on the Lanreotide until it stops doing what it is supposed to before trying something new, as the treatment options are limited and there isn’t data on whether or not they can be repeated multiple times successfully. Especially with someone who has a history of a second cancer (Hodgkins) and chemotherapy. He also clarified some things about the embolizations. He said that a bland embolization and chemoembolization both cut off the blood flow to the liver, something we cannot do, because during my Whipple they removed a duct that helps my pancreas get rid of bile and bugs, which now filter into my liver. Normally, this isn’t a major issue, but when you embolize a liver like this, it will cause a liver abscess in 20% of patients, landing them in the hospital for a while (because a serious infection like this requires IV antibiotics) and obviously with two little ones and Covid, that’s not something I’d like to risk right now. There is a third type of embolization - radioembolization - that instead of cutting off the blood flow, shoots in little radioactive beads that are attracted to the tumors and give a very direct dose of radiation to them. This makes patients a bit more fatigued, but only has a 5-7% rate of abscess or infection, which is better, of course. That being said, none of this is the plan for now, and may not be for several years, as long as the Lanreotide keeps doing its job (he estimates 3-5 years at best).

With all of that information and hearing that the Lanreotide is not expected to work forever, I really wanted a more accurate prognosis, although nothing is certain in the world of cancer. He said that he has some patients who do these drugs and trials and make it into the double decades - but those are usually the grade 1 tumor patients (I am a grade 2, grade 3 being worse). So, he said a single decade is more in tune with what patients in my situation should expect - but that 5, 10, 15 years is possible. While I WANTED to hear some real talk, and I didn’t expect to hear that everything is good, that was still a little jarring. At 37, and with a 1 and 3 year old, 15 years might not even get me to high school graduation, and that’s the high end. Thinking about leaving my family in the next 5-10 years is beyond terrifying. He said that my liver right now is functioning as it should. It’s “more cheese than holes.” I should be glad for that. I am.

Here you can see my two scans. Left is June, right is February. This may not be the perfect shot (I was trying to take a screenshot while we were talking), but you can kind of see some of the white spots (cancer) with some blackness (necrosis), so, that’s cool.

The second call was with Dr. Ursina Teitelbaum, the oncologist who specializes in neuroendocrine cancer. She was awesome to chat with, as always, and agreed to take over my care - something I needed to ask because Dr. Rose is ready to pass me along like the worst re-gifted patient ever. I also asked her some morbid questions and was particularly surprised to hear her response, too. She said had my June scan indicated progression in any way, it would have likely meant a 1-2 year prognosis. I am a little annoyed and confused as to why no one said anything like this to us in previous visits. I mean, you’d think someone with toddlers deserves to know that they may only have 12 months to live, especially when they are currently spending their time in quarantine and not doing any of the things that mean the most to them. She agreed with Dr. Soulen, we should hold off on the embolization for now, and wanted to see me again (virtually) in September. She also said she would get another scan scheduled for me for before that appointment and that we could plan for someone to come to my home to do the Lanreotide injections, rather than have to get into Penn each month for that when I am trying to work and parent this fall.

One thing that she said that stuck with me, was that she believes this pandemic is going to get a lot worse this fall, and that regardless of what happens, we should be careful, but not limit visits with loved ones. We need our family and friends around us for support. We need that connection. While maybe her message was to “live like you are dying” because I am, in a way, dying, I think she is living this way too. I think she believes that the damage that months and maybe years of this will do to our psyches may be greater than the risk of getting Covid (not worse than actually getting it, but again, being “safe” and careful, in masks, etc.) Just something to think about, especially for my family.

In other news, my anxiety has been through the roof (not surprisingly so - I did get diagnosed with cancer exactly a month before we got hit with a global pandemic, ya know). After a talk with my primary, we upped my Lexapro dosage from 5 mg to 10 mg last week. According to my OBGYN, that’s still a very low dosage (they said they prescribe 20 mg to woman for PMS sometimes, so there’s that), so we will see. I really think I need something for panic attacks, other than a 32 ounce frozen margarita from Mad Mex. They get costly. My primary has given me a couple Ativan doses to hold me over as the new dosage of Lexapro kicks in and wants me to follow up in three weeks. Til then, expect more of a “hot mess” than you’ve seen before. Please note, hot does NOT indicate I look good right now, and “seen” is perhaps the wrong word, too, since, I barely SEE anyone. Just forgive me, I’m losing it.

* Dark side: Change in plans: Cancer probably WILL kill me, afterall.

* Bright side: Being chronically ill may help to keep me working from home this fall, instead of returning to the cesspool known as high school. Maybe.

* Next steps:

7/27/20 between 8:30-10:00 a.m. - home visit from phlebotomist

7/30/20 at 9:30 a.m. - Lanreotide injection #6 and appointment with Dr. Rose

9/20 - Next CT scan in Valley Forge (instead of my super close Willow Grove location), date TBD

9/22/20 at 9 a.m. - Telehealth appointment with Dr. Teitelbaum

Morbidly accurate GIF:

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