Month: August 2023

We are back from our travels, and it is nice to be home. But Dancer’s absence remains a keenly felt hole in my heart. I feel like I am letting his memory down by not giving him the tribute he deserves. But I am so exhausted and numb I don’t feel like I could give him his proper due. I still can’t bring myself to look at pictures of him. So it will be a bit longer until I share the wonder that was Dancer with the world. I don’t know if the tribute will be worth the wait, but he certainly was, given that we didn’t see him for the first few weeks he lived with us. But that is a tale for another time.

We have learned that travel is possible, albeit a bit bulky, given how many medical supplies and redundancies that we have to pack. This most recent trip I forgot one of my pain medications. Fortunately, It was one that did not have any withdrawal symptoms. I left it behind on a Saturday and I didn’t hear back from my palliative care NP until Monday. I don’t seem to be any worse for the wear for not being on it, so that it one med that I can strike off my list.

I had been trying to wean myself off all unnecessary meds when I found myself suddenly needing to add several, so this is a small victory. Speaking of meds, I have now been on 30mg of Cymbalta and I think (hope/wish) that it may finally be working. We tried upping my feed from 25 ml/hour to 26 ml/hour overnight while we were in Lake Placid and I didn’t wake up in tears. But I was still white knuckling it. David didn’t think I was getting any more nutrition than I was spending gritting my teeth through it. So I returned my pump speed back down to where it had been.

I want to try increasing my pump speed one more time before I meet with my psych NP on Wednesday. If I can’t pull it off, I think I am going to concede defeat and go up to 60 mg of Cymbalta and see if that does the trick. I am beyond ready to start the long, slow slog to full, or at least, adequate, nutrition. Based on my previous experience, I was only able to increase my speed by 1 ml/hour every 3 days. So even if I succeed in my experiment, it will be months before I get back to a sustainable level.

I am drinking 1/3 of a container of the 1.4 formula at least once a day regularly now. And I am getting two servings in more than half of the time. That gets me to 1,100 calories, which does make a noticeable difference in my brain processing power. I am so depleted, the impact is short lived, but it is certainly an incentive to keep pushing it in.

The combination of the added exhaustion from the travel and my malnutrition has left me really bored. Sit coms have become too much. I can watch short clips of humor on YouTube and that’s about it. I can barely read anything of consequence. I am even struggling to watch baseball when I get tired. It is all just so cognitively overwhelming. Any and all content becomes an overwhelming noise in my brain that just exacerbates my exhaustion. I loathe it.

My appointment with the nutritionist was rescheduled to tomorrow. So hopefully she will help me come up with a feasible and sustainable plan to keep upping my nutrition. I can’t think of anything more than keep drinking my formula, but what do I know. Regardless, it will be nice to speak with a nutritionist who has experience with enteral nutrition.

I am in no shape to be writing this update. I am exhausted, in pain and my heart is broken into little bits. But there is news, so I am posting.

Quick update. For anyone who missed it, we came home from the Berskshires to a very sick Dancer, my much beloved cat of 13+ years. He left this world at home, in my arms, Sunday afternoon. He deserves a memorial post, but I am not yet ready to write it. Everything is just too raw right now. Given that we are heading to Lake Placid for a week with the other side of David’s family on Saturday, it may be a while. But he will get the tribute that he deserves once I am feeling up to it.

The Bershires went much better than expected/feared, but since we literally walked into an emergency at home, I have neither processed nor healed from that yet. Possibly more on that another time.

The real update is that I have medical news to share. After some to-ing and fro-ing my Stony Brook GI finally got in touch with my psych nurse practitioner who supervised me going off my psych meds. They have agreed to start me back on 30mg of Cymbalta to see if that works. I took my first dose yesterday.

Amidst the loss, I managed to pull off my 15 hour fast and SIBO test yesterday. David went into Manhattan for me to drop off the completed test. Results will take 5-7 business days. So we settle in to wait for news.

I have an appointment on Thursday with the nutritionist that the traumatizing GI referred me to. This nutritionist has experience with tube feeding, which makes her, in my experience at least, a bit of a unicorn. I am looking forward to having a conversation with someone who gets nutrition, but I am also anxious given the circumstances.

We now have both the original 1.0 and the 1.4 formula at home and I have been supplementing my nutrition orally. Occasionally I get fancy and can drink two servings in a single day and gotten in as many as 300 extra calories in me in a single day! But even the extra 150 makes a difference.

Of course, nothing involving my tube can be easy. When I tried to order my monthly allotment of formula and supplies, my supplier told me that my formula is backordered until the end of September. They offered me the option of ordering the 1.0, which would drop my caloric intake by a third, or get an Rx for another formula.

The problem with many other formulas is that most of them have soy. And with me being allergic to soy, that makes them a poor choice. There are a few formulas without soy, but I don’t know if they have a 1.5 peptide option. Basically, it wouldn’t be an easy switch.

In retrospect, the following is something that I could have had Mary do for me, but I didn’t know that I was about to fall down into a rabbit hole. Hang on folks, this is where it starts to get weird.

I called the formula manufacturer, a company I have been ordering directly from for over a year now, to see if they have any of my formula in stock. When I told my tale of woe, I got transferred to their customer advocacy team. I once again, relayed my tale of woe and, once again, and they said they would call me back.

They did and told me that they had spoken to the sales team who assured them that the next time I ordered my formula, it would be in stock. I explained that that time was now, and I had just been told that they were out of stock until September 25th, which is why I called them in the first place.

They said he would call the sales team again. Shortly thereafter I got a call from the supply company telling me that there had been a miscommunication (although carefully, not an apology) and my order would be shipped tomorrow. I am still kinda holding my breath until I get the shipping notice from my supplier.