16. September 2013 15:10
Huntsman Cancer Center...Huh?
Hello Everyone, The last month has been very stressful and more of the same. Nothing ever seems to go the way it is supposed for me anymore. Just when things start going well, something always gets messed up.
On Aug 15th I went to SLC to do another PET scan. This one was at the Huntsman Center. They do this test a little different. They shoot me up with the radioactive sugar like normal but instead of the normal 50-minute wait they do 90. Which is very boring and they do not like you to read or move. Plus the test itself is 35 minutes long in the “tube.” Supposedly this test is more accurate.
The report on the PET scan came back bad…and not so bad. There has been only a little spreading or growing of the tumors. They are basically the same size which is good since I have not had treatment in 3 months. But the activity or brightness has gone WAY up. The main tumor at the top of my stomach went from 11 SUV to 22.34 SUV. The other larger tumor went from 6 to 18 but both are about the same size as before.
On Aug 16th I talked to Dr. Halwani, who is running the clinical trial at the Huntsman Center in Salt Lake. Here we setup a start date of Thursday the 22.
I am trying to keep things normal in my overall life. I have stopped going to work but still working from home.
I am also looking at potentially hiring an assistant that may replace me in the future. This is a lot harder than I would have thought. I have to make a list of what I do, then I have to go through and fill in the details. I realized that no one else in the company has a clue what I do. This task is incredibly frustrating and actually very sad. Do not like the idea of not being here. But I guess that is to be expected.
The big issue for the week was I got sick on Wednesday August 21st. I drove to Salt lake that day. It was a miserable drive. I was very sick with flu like symptoms. I really should have called the dr. and the hospital but I was very worried about getting kick out of the trial or waiting longer on getting treatment. It has been months since my last treatment and I have started to show new symptoms such as night sweets and itching. Obviously this was very worrying to me. (somewhat of an understatement.)
I went into my appointment the next day feeling a little better. I thought I would be able to fake it. I was not. They were rather upset that I did not call and sent me home. Along with some antibiotics. I spent the next two days in bed in SLC. I was in bad shape. I went back to Moab on Saturday not feeling great but better. By Sunday I was a bit better. And on Monday I was…normalish. Still sick but not in the body.
I was pretty good on Tuesday Aug 27 or so I thought. I talked the doctor into giving me the drug that day. The best part of the day was the free set of Skull Candy headphones given to all new patients. That is about the only good thing that has happened to me at the Huntsman Cancer Institute. I will go over this more later.
I had to sign new consent forms because they have found new side effects for the drug in the past week. One of the new side effects came from animal testing. Which means this drug is so new they are still testing it in animals…and still finding side effects.
The infusion center is amazing. Huge room with great views of the Salt Lake Valley. Very comfortable and fairly private chairs with individual tvs. I can not stress how much money this place must get, really seems like money is not an issue. The service is the issue.
I came into the Infusion room around 1:30. I was setup with a nurse and a helper. The nurses seem to be taking care of about 8 people at once. Which I thought was a lot. But it was hard to tell.
I was hooked up fairly quickly and got under way. the quote of the day came from my nurse who said “Wow, this does not have name? It’s just numbers. Never seen that before.” Very reassuring.
The infusion took about and hour. The big issue was that I then had to wait 3 hours and get my blood taken to see how much of the drug was still in my body. Here is the rub. The blood tests are not to see how I am doing it is strictly for the drug company’s research.
At around 430 my nurse left without warning. The only way I know this is because I could see her from out of my window at the bus stop below.
At 5:30 another nurse came by to do the blood draw. I was not feeling great so I asked her to check my vitals. I would have thought that would be the routine but I guess it is not. Temp was a little high but nothing to worry about she said.
I went back to where I was staying. About a 40-minute drive away. By the time I got there I did not feel great at all. I had dinner with my friends and sent out texts to my main contact that if I called in the middle of the night, acting weird to call Jon and Gretchen, the friends I was staying with.
On my way to bed I asked Jon for a thermometer to have at the side of the bed in case. When he gave it to me he said we should check it. It came out to 101. We got another thermometer and that one came out to 103. At this point we called the emergency number the clinical nurses gave me. The doctor I spoke to told me to go to the ER. Preferable the one next to the huntsman.
We went to the U of U ER. I actually did not have to wait. They got me in a room right away. We spent about 3 hours there, mostly playing board games with Jon on Gretchen’s Iphone. They finally decided that I would be admitted to the BMT ward of the Huntsman.
This is a very similar experience to getting admitted to the LDS BMT ward for an infected line years ago. But the rooms at the Huntsman are enormous compared to LDS.
After being admitted I met with the night doctor. She said I would probably be out around noon the next day. This was great news to me.
The problem was no one talked to Dr. Halwani, even though I told them to call him and his nurse Mary. This is a trial drug and normal treatment might not be correct because of that.
After 4 people told me I would be released, Mary came and told me she doubted I would be there less than 3 days.
Even after I was told that several of the nurses told me I would be released soon. The communication was terrible.
My sister flew in the next morning. And my dad and brother came up on Saturday. We played cards and it really was not to bad.
I also had lots of visitors. Including my favorite nurse from LDS hospital. And several of my friends stopped by to watch college football. The room was kind of like a hotel room more than a hospital.
The room was not only nice. The whole floor was great. With an outdoor patio and walkway. I keep thinking how hard it will be to go back to the tiny LDS hospital rooms….that is until I think about IV’s changes.
The IV the ER nurses put in my vein was right on my elbow and very uncomfortable. As soon as I was moved to the Huntsman I asked for them to redo it and put it in a different location. They basically refused. Turns out there was a reason for this. They are really bad at IV lines.
They required a LOT of blood during the first two days. And none of it could come through the IV. Which required them to poke me a lot. I have never really had issues with anyone finding a vein. Especially just for a blood draws. But for some reason it was a huge deal here. Not a single time did they get the vein on the first try. Which for me is very rare.
After four days they decided to remove the IV that the ER put in and try the other side. It took three different nurses to do it. Again unheard of in the 3 years I have been spending time in hospitals. The second time they thought they had it in and started the antibiotics. My arm stared to swell up and get really stiff. My arm two weeks later is still slightly painful to bend.
The last IV I got they put it in my wrist. Blood shot everywhere. Then the nurse did not clean up the arm afterward and just slapped the tape on over the blood. Then left, with my other IV still in! About 25 minutes later another nurse came by and took out the first IV. At this point I had my mom call customer service. The head nurse came in a short time later and redressed the IV, Apologizing the whole time. Here is the “funny” part. The last IV was in for 2 days and was never used.
Enough about the service at Huntsman. I will just say money does not always buy quality.
In total I was in the hospital a week. I had a lot of tests run. Including several that I was never told about. A guy in a wheel chair would just show and tell me “I am supposed to take you to get a blah blah scan.” No warning from a nursed or doc. Yes very bad communication.
Dr. Halwani visited me several times. He told me I was going to be in the hospital at least two maybe three weeks. I thought that was ridiculous. I also told him I was leaving for my brothers wedding in two weeks no matter what.
It turns out I had pneumonia. Probably from being sick before and the infusion extended the issue. No one else has ever had a reaction after the first infusion on this drug. So that is a good sign. Though the pneumonia could be related to the cancer itself.
I have been taking it real easy since. The Dr. told me if I have another reaction they will most likely have to kick me off the study.
That would probably be a death sentence.
Since I have been home I have felt pretty good physically. Though I have not really been doing much. Not being real physically active and avoiding anyone that might be sick for the most part.
My highlight of the year if not longer was being the minister for my brother's wedding last saturday sep 14. I was SO nervous I was worried I would cry the whole time. One of the first things I did when I got the bad scan in April was call my brother and sister in law and told them to final set a date! They had been engaged about a year at that point. And if anyone knows Obe and Natalie they could have gone for ever without setting a date. The wedding of course was beautiful and I am very happy I was able to be apart of it.
I go back for another CT scan on Wednesday Sep 18th. And then I have treatment on Thursday. I really hope everything goes alright.
I am pretty excited to see the CT scan and I hope to see some progress but the doctor tells me not to get my hopes up. Though there was a person on the study with a Hodgkin’s that had full remission at 8 weeks. Hard not to get my hopes up. I feel great. Thank you all for your support.