Went to Japanese temple yesterday. Checked out food and craft fair. Picked up this little Siddhartha, about a foot tall. Not religious in any way, of course. Just checking out other cultures. It was pretty cool. My caretaker picked up a few cutesy knick-knack things. It was a beautiful fall day in San Diego.
Oh, going to check out a Thai temple this weekend.
Too bad about the Giants. It looks like they’ve already given up. Hopefully they’ll get their ass in gear on the road. Viva Los Gigantes!
It’s been a little over 2 months since I first made entrance at the City of Hope. I have gone through test after test. The doctors were high on the idea of me doing a bone marrow transplant, using my own cells.
Well, after 2 more months of inconsistent treatment on my tumors, the tumors in my lungs have grown to tremendous size and taken away my voice and severely threatened my breathing. I am in no shape for a transplant.
After a routine visit to COH they sent me to a very nice hospital in Pasadena. COH had no beds available. In addition to therapy dogs visitation, I also got physical therapy, oh, and let’s not forget the 10 rounds of radiation on my lungs that saved my life. Oh! How about the 1.5 liters of fluid that was removed from my left lung!
So after all that, I went back COH. They thought I might be included in a Phase I clinical trial. This means I would be a guinea pig. It is totally experimental, none of the drugs have been FDA approved. Well, the doctor in charge of all the trials at COH determined, based on all the chemo that I have already been through, that I would not be a good candidate for these low-dose experiments. And, the experiments with higher doses, I do not qualify for, because I have neuropathy from all my chemos.
So, I am going to get some really good hospice care here at home. I am moving downstairs. I am finally going to have a doctor here close to where I live.
I HAVE NOT GIVEN UP! Five doctors have given up on me, but I’m still fightin’. You might I’m a little bit stubborn.
I’m still focused on positive energy. One positive in all of this? I’ve been designated permanently disabled. That means that, after a few forms are filled out, my student loans will be forgiven, totally wiped off the books! Also, I get to park a lot closer than you. You will definitely still beat me inside to the ballpark but I get to park a lot of places and for free!
Stay tuned! I have a lot of free time now, so I can blog more. I’ll talk politics and sports and anything else that catches my fancy. This means I can tune in more to read YOU guys.
For the past month I have been going back and forth between San Diego and City of Hope in Duarte, CA, which is north of Los Angeles. I have been poked and prodded and tested.
I’ve gotten shots and infusions of blood.
I’ve even had some chemo which kicked my ass. It’s some stuff I’ve never had before - oxaliplatin and gemcitabine.
I’m fighting nausea and tumor pain and weight loss.
Next up: I have more testing and physical rehab to build up my strength so that I can undergo a bone marrow transplant using my own blood and bone stem cells.
The above picture is of me having my first chemo at City of Hope. Because of my weight loss and previous chemo, I feel cold most of the time and I’m bundled up. I’m going to have more chemo after the transplant.
I’m just going day by day and test by test. The plan of attack keeps evolving and changing and I just have to roll with it. My hair has been temporarily growing back especially my facial hair. It’s really weird.
At first I was really excited to have hope and a new plan to beat this cancer. But things are going very slowly and I just have to be patient as the doctors figure out what’s best from week to week.
Very good news today. The City of Hope called me today and gave me an appointment to see an oncologist in a couple of weeks. They are a specialized cancer center north of Los Angeles. They are considered to be on the leading edge of cancer research and treatment in the United States.
A very kind nurse from my insurance company has been giving me advice on the best care. After I filed a complaint against my old oncologist for abandoning me, I got back on straight Medi-Cal. I was on a subsidized contractor under Medi-Cal. So, when it changed, I got out of the nursing home and applied for an assessment at C of H, per my kind nurse/adviser.
I am so happy to finally have the opportunity to get the best care around. I will learn if the cancer is treatable under established procedures or if I can get into clinical trials. I will find out how much hope I have, how much time I have. I will fight to live and enjoy as much time as I have left, whether it be five months or 50 years.
I had an awesome birthday party with the people I am closest with. To spend time with all of the people you really care about, all in the same place, at the same time, was an experience I will cherish forever.
Thank you to all the people who keep me going by sending positive messages of hope, triumph, and strength.
I am out of the wheelchair and walking around a bit. I don’t have much energy yet, but I’m working on it. Since it’s been about two months since my last chemo, the neuropathy has subsided a bit, but the tumor pain is growing.
Audrey, my caretaker, is stuffing me full of good food so I can put on weight and get some energy. I especially love my wheatgrass juice. It’s summer melon season, and I am looking forward to juicy goodness.
I know it’s been awhile since my last post, but I was just waiting and hoping and visualizing the call from C of H.
Oh, I remembered what #3 is! It’s related to going number 2, ha ha!
OK, a few days ago, I wrote about some failures going on in this nursing home.
I am constantly being reminded of my third point. The response times here once you push the call button are horrendous. One time it took 20 minutes for a nurse to come to my aid. What if someone has an emergency?! They are doomed! Sometimes, I sit on the throne after I am done, waiting for what seems like an eternity (15 minutes) for a clean-up and help back to my wheelchair and my bed.
This has got to be a violation of state and maybe federal laws as well. If you know the regulations, holla at me, let me know what’s up. I have already complained to the administrators about these epic fails, but of course nothing has been done. There IS one administrator here that I have spoken to who does give a bleep and has a good heart. So I have to give credit where credit is due. But again, no action has been taken.
It is my birthday, so I got myself a little present. Bought the Livestrong Flak Jacket polarized glasses. Cha-ching! $$$$
This is effin historic! All the reporters that were in the Supreme Court during the hearings were doomsdayers, saying,
"Oh, it’s not going to pass, they’re going to strike it down."
But, miracle of all miracles, America is going to have health care. This is the time for Democrats to finally grow a pair and to make sure that this bold legislation by President Obama stays in effect. We must keep it going and fight against Neanderthal Republicans who want to repeal it.