Month: December 2024

The transition to enteral feeding continues to go well. This afternoon, I did a couple of hours at 33mls per hour. The goal is 54 mls per hour. I will stay at 33mls tonight when I reconnect and, depending on how I feel, set it back to 32mls while I sleep and then go back up to 33mls after I wake up tomorrow. This allows me to push a bit, while still getting a good night’s sleep.

This morning we met with my Registered Dietician from Stanford and my PCP who will now be managing both my TPN and enteral feeding for the foreseeable future. We agreed to reduce the dextrose, protein and volume of the TPN and go down to 6 days a week.

We are now at a point where I need to start taking responsibility for my hydration again. It had been nice to just rely on the TPN for my hydration. Drinking is still a miserable experience and flushing continues to be an issue unless I go really slowly. But in the grand scheme of things, I am pretty damn motivated to get off the TPN, so I will just deal with the unpleasantness required to keep me hydrated.

Speaking of unpleasantness, I have very persnickety skin. When the PICC line was on my left side, I had absolutely no issue with the adhesive on the dressing*. My right side is a completely different situation. After a couple of days, I developed a sizable angry blister and a couple of hives from my dressing. One of which we watched grow yesterday during the dressing change. We are going to see how this week works out and we may try some of the other dressing options to see if my right arm likes it better.

My pain continues to be on the low side of my normal. If only my nausea was as cooperative. It has been pretty awful lately. Plus the ramping up of my enteral feeding is aggravating my nausea. My PCP prescribed me a new nausea med that she encountered in the notes from my GIs in NY. The GIs didn’t think it was a good match at the time, but the situation has changed and she thinks it is good time to give it a try.

When I am in intense pain, all of my thoughts, anxieties and neuroses disappear. I simply have no bandwidth for them. But when I am doing better, like now, they all come roaring back in. Recently, I had an encounter with a belief system that is so deeply ingrained in me that I had a visceral response to it. In fact, the belief runs deep enough that my therapist wonders if it epigenetic generational trauma.

As I have mentioned before, I have had an eating disorder since I was a teenager. One of the ways I have managed it through the years is a refusal to know my weight. Those numbers are just deeply triggering and problematic and can haunt me for days if not weeks.

Unfortunately, weighing myself is a key data point in the transition process from TPN to enteral feeding. At first, I tried to arrange it so that I would stand on the scale with my back to the readout. David would then communicate my weight to the relevant people and keep me out of it. That lasted about a week before I called it because it just got unwieldy for him to have to run into another room and close the door in the middle of a phone or video appointment. I figured I would just have to suck it up and know my weight. And we did ok until I had recovered enough for my brain to remember its triggers.

Recently, I got on the scale and had a full body reaction of deep loathing to the numbers I saw. To be abundantly clear, my doctors and dietician have not expressed any judgments about my weight. They have only been asking for a key data point. My reaction was entirely my own brain responding to a trigger for some deep, deep trauma.

I looked up from the scale, looked in the mirror and had the startling realization that I have two sets of tubes coming out of my body and absolutely no negative feelings towards them. This left me wondering about the absolute horror I feel when looking at my own body in an of itself. I wondered if I hate my body so much, why doesn’t it bother me at all to have a G/J tube and its stoma as well as a PICC line? Emotionally, I am absolutely neutral on them.

As I have said before, I have an excellent therapist and I am working on these issues with her. Her theory, and I think it is a good one, is that I understand the tubes with my cognitive mind. I know their purpose and despite the problems that they have caused, understand them to be the tools necessary to keep me alive. The body image issue is far too old and ingrained to be stored in my cognitive brain. That is why my feelings are visceral and not thoughts, per se.

I really struggled about whether I wanted to share more information about my body image issues. But then I thought about all of the times we judge ourselves and others for their bodies for eating and drinking. How we hold ourselves and others as responsible for their body size based on what they eat and drink. And obviously, there is some correlation between caloric intake and body size. But I now understand (and the data backs me up), that there is so much more in play there than just calories in and calories out. Yet my own self-loathing and judgment is so strong that 3 simple numbers, and in this context that is all they are, just numbers, can send me into a terrible tailspin.

*Initially, I had a small reaction to the dressing they gave me at the hospital. The home nurses tried two other options and the one that worked for me worked absolutely perfectly. No reaction whatsoever.

If you recall, my PICC line has been recalcitrant when it comes to blood draws. We have Caf-Pow’d 3 times and we still don’t get blood return. So tomorrow, I am getting a brand, spanking new PICC line put it. This time on my right side.

Apparently, even though it is a longer route from my right arm to my heart, it is a more direct route. Left side PICC lines have tighter turns and can get pretty picky about how the body is positioned for it to work well.

It also turns out that PICC lines are put in by interventional radiologists (IR). While my PCP was discussing my case with the IR doctor, she brought up the subject of my G/J tube.

In theory, G/J tubes can be changed by IR doctors as well as by the interventional GIs, who do it endoscopically. When my tube flipped the first time in MA this past summer, I was sent initially to IR to have them replace it. They tried, but a combination of the angle of my stomach and my anatomy made it impossible to make a turn. They kept the stoma open with a temporary G tube and referred me to the endoscopy department.

The local IR doctor told my PCP that GIs have a tendency to place and angle their stomas in such a way that can make it difficult for IR to change the tube. So at least I know that he has encountered difficult placements before.

I really have nothing to lose by letting IR take a shot at swapping out my tube tomorrow. I am not using the current tube at all because it is all clogged from disuse. If they succeed at swapping out my tube, then I can start the process of slowly switching over from TPN to enteral feeding immediately. If they are unable to swap the tube successfully, then it will be done endoscopically at Stanford on December 19th.

There is some minor collateral damage from all this. David and I had to switch sides of the bed, after 26 years, because I needed to have my left arm on the outside so I could feed while I slept. Tomorrow, after 3 1/2 months, things return to their normal order.

But I do have some regret. Ever since we switched sides, Xena Malka has given me the most amazing early morning cuddles. David is really her human, but she has stepped in a bit since Dancer died and I was left catless. But since we switched sides, she has really stepped up her game. But if she is consistent, then those amazing cuddles are about to come to an end.

When we first moved to Astoria, two and a half years ago, David and I switched what side of the couch we sat on. This was to give David the seat closer to the window. Xena Malka’s response was to completely ignore David and lavish me with all of the attention. This hurt David’s feelings, so we tried to figure out what he was doing that was so upsetting to her. We swapped seats on the couch and suddenly David was back in her good graces.

So it is possible, even likely, that as soon as David and I go back to our usual sides of the bed, all of the love and affection that I had been getting will get redirected to her actual human, David. This is the price I have to pay for good blood return. So be it.