[9-02-08] Complaining

[12:35pm]
     Two are two people admitted for the same thing in the same hospital: both have accidentally cut off a finger and are bleeding profusely.

     The first man screams to the triage nurse, "Ohmygod ohmygod, it HURTS SOOOOO MUCH!!! The PaiN, the aGoNy!!!!. Why me? Why does this have to happen to me??"

     The second man calmly approaches the triage nurse, "I seem to have cut off my finger. It is extremely painful."

     For both patients, the nurse jots down: "Patient complained of pain due to finger loss."
     It seems that complaining, in a medical sense, simply means reporting something negative or distressing. With that in mind, I would like to do some complaining.

     So...

     I didn't really write all of what I thought...Why was I so upset yesterday?
     1:I was homesick. After being away from home for so long, I began to miss all of those wonderful things associated with home.
     2:I missed my family, and wanted to tell them what was new in my life, and to find out what was new in theirs. Also, I wanted to see my nieces.
     3:I was extremely tired from the trip, and just wanted to lie down. In addition, I was craving my own bed for days now.
     4:It's cancer, exerting yet more control on my life.

     Ok, now why was I so upset to stay on the boat? First off, I'd like to say that Barbara has been great: she sat me in a comfy corner, did my laundry, purchased food, fed me, and kept me entertained as she cleared room for me to live in. All I had to do was play my little DS until everything was ready.
     So, as with every small yacht, there are some things which are more difficult. For example, very quick showers and a pump toilet. And for the person with low hemoglobin, it takes a great deal of effort to make it from the forward berth (bed) to the aft toilet. This trip may happen quite often. It's also Barbara's office, so the small area is quite full of stuff. Anyhow, I'll leave out the rest. Nevertheless, it's not optimal for neutropenic cancer patients.

     Ok, enough complaining -- now for some good news! It looks like I wont have another ICE treatment! I sent the following letter to my Stanford Doctor:

Since I have not yet heard from Stanford, I thought I would post my current situation regarding my treatment. Perhaps this will help solidify a schedule for my transfer into Stanford care.

 The latest Pet/CT scan, taken 13 days after ICE cycle #2 shows a partial response to the treatment so far. Tumor size has reduced about 10%, and the metabolism has decreased 60% (from a 5 to a 2).
 My doctor considers this very good news.
 Accordingly, he has scheduled two more cycles of ICE. When I asked him about apheresis, he said that he will do what Stanford recommends. Unfortunately, it seems he has not contacted you all yet -- he said that he would try sometime next week

 Apheresis is a big concern right now because, as I understand it, it is possible to expedite the collection of stem cells by combining ICE with G-CSF or some such. I am aware that Cytoxan mobilization is probably the current choice, but it looks like that introduces more delay, and I would like to try my hardest to begin treatment as soon as possible.
 If at all possible, would you be willing to coordinate with myself or my doctors to help make it so that I begin outpatient chemo at Stanford as soon as possible? Perhaps starting with apheresis?

 Please let me if there is anything else you would like to know. Also, please let me know what you think, or if you could outline a possible schedule for treatment.

Thank you,
- Austin

I got back the following reply:

I have not heard from Dr. Irwin yet so thank you for the update. With some residual disease present after the 2nd ICE, I agree with proceeding to the 3rd ICE- It is my plan to give you cyclophosphamide after this cycle 3 and collect the stem cells off of the cyclophosphamide. A fourth ICE is likely not necessary with your disease responding and our plan to go forward with transplant (keeps the toxicity down).

Zoe should be back in the office after the holiday and will get your calendar set up. There has been no lost time and everything is moving forward smoothly, so not to worry. Thanks again for the message.

So... awesome! I could be getting the transplant sooner than I thought! Oh, and I have an appointment with my oncologist tomorrow morning! So things are moving smoothly!