IPT Report

Yesterday was a wild adventure. We got to the oncologist's office on time  and waited and waited and waited. Seems she was running behind because of some computer problems. After over an hour and a half of waiting and waiting we cancelled the appointment and rescheduled for the 29th. Nobody apologized to us for the inconvenience. AAARRRGGGH!

Then we had to rush home and then head up to Santa Fe. Hennie was also running late so we waited and waited but were served tea and treated very graciously. Hennie is wonderful. I love her. She is a bit scattered and distracted but very smart and attentive and compassionate and did  I say smart? The IPT procedure was intense and having my glucose drop and feeling hypoglycemic was pretty uncomfortable and then the chemo drugs felt yucky. I’m so glad I’m not having regular chemo; the tiny amount yesterday was enough to make me pretty sickly.

She gave me glucose and a bunch of vitamins and amino acids and other nutrients in the IV to make me feel better, as I ate my long awaited lunch (I'd been fasting since 7 am.) It all helped but I've not  regained my perky self from yesterday prior to the IPT.  I was sleepy all the way home and crashed early last night. Then I was nauseous in

the night and woke up several times feeling worse until I finally vomited. I was better after that but woke up this morning still kinda nauseous. I didn't feel like eating anything today until about 11:30 and later I had some lunch when my appetite came back.

Earlier this morning I went to the Pres Infusion Center to get my Vit C IV. I was all comfy and situated in a hospital bed with my IV and my laptop and my food and  beverages. It's kinda pleasant though very different from Edie's office. The nicest part is that they have heated blankies and I love me a hot blankie! I had several nurses to help me and wait on me and  that's nice. I had the curtains on either side closed so I had a  bit of privacy, though I did see everyone coming and going.

My IPT treatments starting next week are in the mornings so I'm  hoping they will go more smoothly. And the more we do it the more  Hennie will get to know how to work with me and adjust the dosing. She impressed me with  her accessibility; she gave me her cell phone number and told me to  call her anytime if I'm having any weird symptoms or have any

 questions. Did I say I really really like her? ;-)

Anyway, I'm glad I had the few days of feeling so good because it makes this bearable. And I am so thankful for Mike. He took such good care of me yesterday. This whole adventure has certainly brought us much closer.

It's Just Information!

It's been five months since what I like to call "the dog park calamity" and it's been quite a while since I've written an update. And since some folks don't read my Facebook postings and some don't get the photos in my email updates, I've decided to start a blog. This is my first posting. 

Last week I saw my orthopedic surgeon for the last time. He did x-rays and said my ankle bones are 100% healed and I'm doing great. I'd been discharged from physical therapy three weeks earlier and was feeling much stronger. I had been only using the cane when walking the dog and I was finding it easier to walk and was having less pain and swelling.

He said it's still going to take some time to get back to normal but that the degree of function I achieve will be up to me and how much I push myself and how determined I am to get better. He said some folks in my situation would just accept the limited range of motion and weakness and pain as something to just live with but he said knowing me he expected me to continue to improve. I think he really gets me even though he's only seen me a few times. I gave him a hug and left for my next appointment. 

That day I had four appointments before noon. If someone had told me a month ago that I'd be feeling good enough to go from a visit with my orthopedic doc to a PICC line dressing change to a blood draw to an IV infusion I would have thought they were joking. Reality is that I am feeling better than I have in years. My energy just keeps getting better, my head is clear, virtually no brain fog and very little fatigue. I keep saying that if this is what having cancer feels like then okey dokey.

When I was told that there was a tumor in my lung my first thought was oh yeah, that's what my body does. I was not alarmed or panicked or upset. It was just information. But the docs around me in the hospital seemed to be in a panic and in a rush to do something about it. They wanted to line up testing, scans, biopsies, follow up appointments with oncologists. All I wanted was to get my broken bones healed.(I was recovering from surgery to fix the breaks in my ankle and wrist and I had casts and braces and was learning to walk with a walker.)  I just wanted to do my physical therapy and get out of pain. I spent a total of sixteen days in the hospital and rehab and didn't think much about the cancer because it didn't seem like anything to be upset about. 

I've never been upset about it. When the oncologist said it was early stage and that chemo and radiation could catch it and prevent the spread, my thought was how do they know this is new and that I've not been dealing with this for awhile? How do they know that it wasn't bigger before and more widespread and now it is less so? 

After I had the procedure to get the biopsy of the lymph node and the surgeon said he was very sorry to give me the upsetting news that the node was positive for cancer, I said I'm not upset, it's just information. He looked at me funny; I don't think he was used to folks receiving cancer news like that. 

After meeting with my oncologist and refusing the offer for chemo and radiation, I started high dose Vitamin C IVs with my nurse practitioner, Edie.  We followed an established protocol and gradually worked up to 125 grams per infusion. That's GRAMS! At first I felt wiped out by the IVs and had headaches and fatigue for a day or so. Edie suggested I try Epsom salts baths to help sweat out the toxins. That helped a lot. I had also been doing coffee enemas about once or twice a week since starting the IVs and I increased them to almost daily. Then I was able to easily tolerate the IVs and I started feeling more and more energized and clear. A few weeks ago we added an IV of phosphatidyl choline once a week and that made me feel even better. After 5+ years of chronic fatigue syndrome and trying many many things to feel better, I've finally found something that is doing the trick. 

I've been getting two to three Vitamin C IVs a week for eight weeks now. My skin has improved, my pain has lessened, my ankle is getting very strong and my chronic back pain is almost nonexistent. So feeling this good after feeling so bad for so long it is really hard to believe that this body is dying of cancer. I think it is managing cancer very well. All that said, I had a follow up CT scan scheduled for last week and in anticipation of that report and the possibility that it might show something other than tumor shrinkage, Mike encouraged me to come up with a back up plan. He had been researching alternative cancer treatments on the web and found IPT. It's Insulin Potentiated Therapy - 
IPT description and  Another IPT description    

We found a local alternative MD in Santa Fe who does IPT and went to see her last week, the afternoon after I had the CT scan in the morning. We liked her and she was confident in the treatment and reported she'd had a  lot of success with it. And she looked at me and said that I am in much better shape than most of her cancer patients when they seek her out. I'm healthier and not weakened by chemo and radiation treatments. We agreed to follow up with her after getting the results of the CT scan.

I had requested the CT scan report to be sent to Edie, my nurse practitioner, so I received a copy on Monday, several days before my appointment with my oncologist tomorrow. The report was not what I was hoping for, the tumor in the right lung had grown and there was increased activity in the lymph nodes and a new tiny nodule in the left lung. 

Hmmm...should I be upset? Panic? Nope, not me. It's just more information and can be interpreted different ways. One way is what I had read about Vitamin C IV treatment for cancer where the tumor may grow first before it shrinks, a part of the natural healing process where things get worse before they get better, or the biopsy punctured the lymph node and released cancer cells which caused a spread. (This explanation makes a lot of sense to me because the surgeon said the lymph node he encountered was very hard and he had to chip away at it to get a sample for biopsy.) Anyway, as my friend Leela said, just another bump in the road. And I'm used to bumps and lumps; my body has always made them. 

So, tomorrow, Thursday, I go to see my oncologist in the morning to talk about the results of the CT scan. I assume she will meet me with doom and gloom as before and may even up my stage from Stage 3A to a 3B or a 4. More information. Then in the afternoon I have an appointment for my first IPT in Santa Fe. I'm scheduled for twice weekly treatments for eight weeks then more testing then stay the course or taper down. I'm fine with that. It is chemo but it's very low dose, a tenth of what I would receive if I were doing conventional chemo, and it will be followed by a nutrient IV to make me feel good. No complaints about that! Mike is taking me so we will both learn and watch and he'll be driving in case I don't feel well after. If all goes well and I'm not wiped out by the treatment I plan to drive myself to future treatments. 

OK, enough of the cancer stuff... Here are some photos of Mike and me and Wiley on a walk in the foothills of the Sandias on Saturday October 20th. We were still having unseasonably warm weather, hence the summer attire. 

Mike and Wiley at the beginning of the trek

Wiley and I managed to get up on a boulder

Nope, we didn't see any rattlesnakes

Me and my cane. 

Note the colorful PICC line cover on my arm. My friend Raya sent me lots of colorful socks to cut up to make PICC covers so I wouldn't have to always wear boring white ones. 

I was still wearing an ace bandage on my ankle here. 

Mike and Wiley at the end of the footbridge.

Taking a little break. 

I'm only using the cane these days to walk Wiley, otherwise I am doing OK without it.