Wednesday, 2015/10/14 – Doctors can help, but healing is YOUR job.


Good advice in all of life, but particularly so if you are entering diagnosis of,  and treatment for, cancer:

Be proactive.

Get things that even MIGHT be an issue taken care of ASAP, before they get shoved aside by the onslaught of events and concerns that WILL be coming at you.    I should have had a nutrition consult BEFORE BEGINNING chemo. The issues I have had with swallowing ever since the tonsillectomy are serious, and interfere with my hydration and nutrition.  I should have insisted that they be addressed more effectively over a month ago, BEFORE they caused me to lose 30 lbs, weakened me, and almost made me get a hole in my abdomen for a GI tube. I just finally got the preliminary swallowing exam, which resulted in an appointment for a swallowing evaluation, to be done on my last day of radiation.  It should have happened before my first day.  I would not be sitting here dreading my next mixing and drinking of the truly nauseating weight gain shake, that is now the bulk of my daily diet.

I allowed my nutrition to get out of hand, and nearly paid for it by undergoing  a very unpleasant, painful, expensive, and dangerous surgical procedure. NO surgery is minor when one has Leukopenia and cannot fight off any infection.  I also allowed my radiation wounds to get to a truly horrible stage, before demanding something better than the 100% Aloe Vera gel I had been told was the ONLY thing I could use.  I can cite the scheduler dropping the ball. I was supposed to be seeing a radiation oncologist every Wednesday, but no-one told me so, and I did not see one for three weeks.  I can cite the lack of medical nutritional counseling, especially in the light of my having complained of trouble eating, and rapid weight loss. I can blame everyone but ME, but that would be false. I am the one who must survive, must heal, must cope with the hail storm of crap flying in my face, and I am the one who must make sure I have the help I need.  Doctors can help, but only I can heal.  I have asked a lot of questions, done a lot of research, come to understand many things, but I must also speak up when things are not working well.  I will not fail to be more vocal in the future.

I saw Dr. Z on 9/23, no-one on  9/30, and only Hematology Oncology on the 10/7, so when Dr. Z saw me again, on 10/14, I was a mess.  I had lost 30 lbs.  and my neck and shoulders were covered in open sores from the radiation. Dr. Z immediately prescribed Silvadene, (which I should have been using from the first open sore) and sent me to Urgent Care for a feeding tube.  Since I was about to have surgery on my stomach, I was NPO (Nil Per Ora, not allowed to eat or drink anything at all) and I was feeling like a dried-out, cotton-stuffed dummy.  It was about 3PM, and I had not eaten since 10:30 AM, and had not even drunk as much as I should have, anticipating food and drink when I got home at 4. I dutifully went to the ER Department, and checked in, and was placed in a room they called the Trauma Room. There I met RN A, a very, very astute nurse.  I told him what was happening, and he quickly and clearly explained that the protein powder which had been my entire diet for weeks was not for maintaining or gaining weight, but for LOSING weight.  He told me what  I could use to gain weight, and where to find it. At last! The information I needed, from a nurse rather than a doctor.  The Radiation Interventionist  (the person who would actually perform the surgery) finally appeared about 8PM, and after a quick consultation and exam, he and I agreed that the procedure would be  a serious mistake, and that I simply needed to drink the right stuff! This after being NPO for 10 hours, which only further exacerbated my malnutrition! I had long since missed my ride back to Lancaster, so had to take a taxi to the apartment.  I had no food in the apartment, so a little after 9PM, the Discharge Planner got something from the cafeteria: four tiny tubs of Jello (no nutrition at all, because it was not even gelatin, but carageenan which is basically mucilage), two 6-oz boxes of apple juice, and two 8-oz cartons of NO-FAT milk. Damned near NO NUTRITION AT ALL, only 350 calories.

I got it all in me, and went to bed, exhausted. In the morning, I went to Von’s, and searched for something with the sort of nutrition I needed, and was sorely disappointed. I need at least 2000 calories a day (preferably over 2500) and the best I found there was Ensure Complete, with 350 calories in a very pricey 8-oz bottle. That afternoon after the shuttle dropped me in Lancaster, I went straight to GNC, found the best weight gain shake I could, took it home, and went through the ordeal of trying to mix it and drink it. I had a terrible struggle with getting the stuff down and keeping it down, and with mixing it so it was palatable.  I did a slide show describing the elaborate method I finally developed for mixing the liquid diet up,  but since then, I have streamlined it greatly.


I first just put the powder and some Omega-3-rich oil in a blender with whole milk, as the package instructed.  That produced over a quart of a foamy, nauseating stuff, which I was barely able to get into me over a period of several hours, and gave me distressing gas and bloating.  The entire volume of the mixture was foam, with tiny entrained bubbles  that stayed, even sitting in the fridge over night.  Then I tried adding things like Vanilla, dietary fiber (wheat dextrin), Coconut oil and Flax seed oil, Stevia, Hershey’s Dark Chocolate Syrup, Nescafé, Almond milk, and whole milk. I even added simethicone (the active ingredient in Gas-X) to try and reduce the foaming.  It got worse rather than better.  Then I decided to attack the foaming with a different mixing technique.  I used my shaker bottle with the dasher built in… no luck… then I finally hit on the key: It’s like glue or flour, so mix it that way.

Here is my [original] labor-intensive but successful method:

DO NOT  mix powdered vitamin C with Ensure.
It will curdle and be truly emetic. ☺

UPDATE: I posted the now perfected method I use to make the weight-builder shake, with details on what I use and where it may be found.

Now that I have learned how to get the nutrition I need, I have gained back 16 of the 30 pounds I lost last month.

As for the Silvadene I should have been using since 9/23, it is working wonders on my radiation wounds, and ten days later, they are mostly healed.

Speak up.
Get what you need.
Don’t passively wait for some magical medical minister to make you mend.
They can help, but only YOU can do the healing.
It’s YOUR body, YOUR pain, YOUR healing.


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