Great Family, Friends, Neighbors...

I just wanted to say thank you to all of the wonderful family members, friends of the family, and neighbors in the good little town of Bishop for their thoughtfulness throughout these tough times. I feel better about being far away in LA with my father and mother and brother surrounded by such caring and helpful people. I also feel strength from people from afar. We are lucky to be supported by such genuine individuals and groups. Many thanks. :-)

One Flew Over the Cuckoo's Nest

Never mind trying to maintain sanity - it's easier to embrace the insanity. Especially when I feel like I am surrounded by the animal version of One Flew Over the Cuckoo's Nest: a deformed kitten limps around like a bird with a broken wing, its sibling's raspy breathing is as heavy as my father's, a black & white cat that's fat enough to be in the Guinness Book of World Records gorges itself, ole "Mini-Me" (Siamese mix) sneezes so hard it shakes her entire frail body, the token "defective" rabbit hops happily in the backyard, and the chicken's perch above the desk remains empty.

Although it's crazy, it's home. Perusing the garage for a clipboard, I see tidbits of notes my dad wrote to others - imparting his knowledge about cars and tools. The smell of grease, oil and metal are more so my father's scent than Old Spice ever was. The huge "fix-it-yourself" manuals gather dust on the shelf above the always-stocked tool chest... In fact, the only salient piece that doesn't seem to have dust on it is the smooth chrome on the Harley.

Roberta from Hospice of the Owens Valley was very sweet. I am amazed these wonderful people are on-call 24-7 to help with all kinds of needs - physical, social, emotional... talk about angels. Their philosophy statement is, "We believe death is a natural part of, and necessary closure to, life as we know it. It is our philosophy that dying persons have the potential to learn, teach, console, enjoy, plan, and laugh during this period of living." They are all about openly and honestly dealing with the prospect of death, which is healthy.

While Hospice will help with providing support services and some equipment, eventually Pioneer Home and Health Agency is the alternative when our needs are more extensive and complex. Already, Roberta has helped greatly - she informed us with the good news that my dad's oxygen level is up to 95% while using the tank, provided us with a thorough living will and other documents, and helped to communicate with Dr. Boo regarding a change in his pain medication to ease his suffering. BTW, I just heard on the news (Stanford study) that love relieves pain more than a pain killer; the same areas in the brain that are used for falling in love are also used to feel pain... Hmmm... Wish it were so simple a solution.

Knowing more about the free Hospice support makes me feel more comfortable about having to go back to LA to work. Today I realized that I could be satisfied to just hang around and help care for my dad as a full-time "job." Later I received an email from my partner teacher saying the students missed me and this made me realize that at least I have a meaningful job to return to...

Most of all, I wish my dad didn't have to go through the immense pain and discomfort he is withstanding... I can't help but think of Chief Bromden, the seemingly mute half-Indian patient in the Cuckoo Nest, for his strength that extended beyond brawn.

Poking Some Fun to Maintain Some Sanity

This afternoon my dad showered and even shaved to greet Kelliann, Aunt Linda, and I. Linda noted his swelling in his face seemed better today, except his lips. She shared that the other day my mom told him, "Well, Angelina Jolie has nothing on you!" :-)

Personally, I think his distended belly and his swole cheeks make him look like Santa Claus, with a button nose. I just wish he had Santa's "magic"...

Thanks to Allison and Google images, my brother and I are also working on communication cards for him to point to (e.g. "What time is it?", ice pack, massage neck, etc.), rather than writing out simple requests, which is increasingly difficult for him.

I went to Dwayne's Pharmacy to buy some Therafirm socks for his legs. His ankles have edema (they're very swollen) and these particular socks (which also come as support hose for women) are helpful for reducing swelling, promoting blood circulation, and preventing varicose veins.

So at least now he has his "stockings." I think he'd like his Harley to be his "sleigh"...

Roberta from Hospice is coming at 1:00 tomorrow.

Clinic Visit Update

This morning my mother took my father to see the Dr. Boo and crew at the Rural Health Clinic. Turns out he has slight pneumonia so they prescribed him an antibiotic. They found his oxygen levels are low - 80% - so Airway Medical brought over an oxygen tank for him to use with his trach. Some of the inflammation in his face has gone down and the oxygen seems to be helping him have a little more energy. The pain is ever-present. This nights are tougher than the mornings...

My cousin Dion made a good point tonight - through all of this, my fathers written communications (e.g. notes, texts) have maintained an upbeat attitude. Instead of constant complaining, he often tries to be humorous.

Thanks for the positivity D.

Hard Times

Last Thursday was exactly one year since my dad was diagnosed with stage 2 of tongue cancer - invasive-moderately differentiated squamous cell carcinoma; he's now in the final stage...

I'm sorry I haven't written much lately but it's hard to find a glimpse of positive hope when things seem so dreary. So this post has a negative overcast and undertone - again, my apologies.

My father is not doing well at all. My mother is taking him to the Rural Health Clinic tomorrow because she doesn't think he can wait until his appointment Thursday.

The past couple of months have been filled with a flurry of different types of medicines - trying to balance painkillers with steroids and anti-inflammatories. Despite all this, of course, he is still in pain and swollen. His right side of his face has swollen up so badly he has trouble seeing out of his right eye. The drugs have also affected his mood and activity. He is drained and weakened by the simplest of tasks now.

About a week ago, he texted me, "mother nature takes her time sometimes damnit"... Timing is everything now, it seems, and time is precious.

More Doctor Visits

Sorry I'm writing this about a week late (I was in the middle of a move)... The appointments actually occurred last Wednesday, August 11 at the CBCC in Bakersfield.

First was Dr. Shambaugh, who didn't have too much to say but did a quick exam. My father's main concern is coping with pain and he asked about medications. He did not care for the Duragesic patches because of the side effects so he's back to taking Percocet and Tylenol. Shambaugh suggested the time-released Percocet (although it's a huge tablet to shove through the feeding tube) but it definitely cannot be crushed or broken into parts so that will be an experiment. He said as long as there's not more than 1 "cook in the kitchen," (in terms of types of medication), everything else should be fine.

We were supposed to see Dr. Gorla next but things were backed up so we went ahead and made Trang's appointment on time. Trang was very positive overall. He said it looks much better inside the mouth than expected. He said before it looked like an "atomic bomb went off in there" and he couldn't tell the difference between what was an ulcer and what was cancer. He said during this phase of palliative care, my dad is "living a meaningful life." Of course, it's not exactly a happy stage but he said he's happy with the status - he really felt that my father chose the right path to follow rather than having Trang attempt a "heroic surgery." He said, "Just because I can remove cancer doesn't mean I should" because of the larger picture and ramifications. He was very impressed that my dad drove to Bakersfield from Bishop that day and has all his license and registration paperwork completed so that he can ride his Harley again! :-)

Finally, Dr. Gorla briefly met with us. He was positive as well - noting the significant weight gain of my father and said the tumor was a lot smaller.

In about 3 months (November), my dad is scheduled for another set of PET and CAT scans. These can prognosticate how long, perhaps... He won't meet with Gorla for another 6 months.

Latest Doctor Visits

The pattern of the lack of communication between the doctors at the CBCC (Comprehensive Blood and Cancer Center) and KMC (Kern Medical Center) in Bakersfield.

The appointment last Monday was supposed to be a tri-meeting between all three doctors. Instead, some of the appointments were canceled without our knowledge. So my mom and dad saw who was available.

The doctors looked at the same results of the PET and CAT scans but delivered different information. While Dr. Shambaugh (chemotherapist) at the KMC told my parents everything looked fine and that everything that the radiation/ chemotherapy was supposed to diminish was shrunk, Dr. Trang (ENT) told my family that a new nodule has spread to his lung and they can do a test to see if it too is cancerous. Dr. Gorla (radiologist) was not around.

My father has decided not to get the test to see if it is cancerous because it is a moot point... The doctors cannot do any further treatment (chemo or radiation).

He will also follow up with Dr. Boo in Bishop.