Memorial

Thanks to all of the family, friends, coworkers, neighbors, doctors, caretakers, and others who came to the memorial on Saturday, December 4. Also a special thank you to Arnie and Kelliann Palu for offering their fabulous home and hospitality for the event. It was spectacular to see how many people were able to share in his memory and provide support.

To those that couldn't make it, we still plan to spread his ashes in the spring - tentatively April 21-24 (Easter holiday weekend) - save the date. I would still love to get entries for the Memory Book I'm putting together to share at that time.

For all, I am working on making the slideshow into a DVD and also posting it online. I will at least have CDs available while I'm home for the holidays this weekend, and will leave some there for interested parties to pick up.

Obituary

--- for Inyo Register 11/25/10 ---

James Preston Tyerman passed away Friday, November 19 around noon. It was just 9 days after his 63rd birthday. He spent his last moments at home with family.

He was born in Oildale, near Bakersfield, California to Gene and Alice Tyerman. He was in the Navy, stationed in Hawaii, during the Vietnam war. He moved to Bishop as a young man and was married to D.D. Merrick in 1977. They had their daughter in 1983 and their son two years later. They proudly watched their children graduate from high school and college.

Jim spent some of his best moments outdoors riding his Harley he rebuilt, racing on sand dunes in his dune buggy he made, and tinkering in his garages - including the one at his old business - Tyerman’s Tire Center. He was a supporter of the local Destruction Derbies, competing for many years and always enjoying the challenge of prepping a derby car. Basically, Jim could build and fix anything with a steering wheel and tires. In fact, he was quite the jack-of-all-trades handyman that many people turned to for assistance and advice.

He was diagnosed with an aggressive tongue cancer in October 2009. Although chemotherapy and radiation treatments helped control some of the tumor, his condition declined rapidly. The family would like to thank Roberta and Anita at Hospice and the doctors and nurses at the Rural Health Clinic for their time and care. It was a painful struggle for all to see how cancer changes the vitality of a person - especially someone with so much gusto.

Friends and family will forever tell fond memories of Jimmy, aka “Toolman Tyerman.” His strength and spirit will live on in his wife, D.D. Tyerman; his children, Joshua and Jessica Tyerman; his siblings Linda & Ron Jernigan, Diana Hamlin, and Bob Smith; his father-in-law, Jim Merrick; and his nieces & nephews, Dion & Staci Harris, Kelliann & Arnie Palu, Jason Jernigan, and David & Kristy Harris.

The family plans to spread his ashes in the spring. An informal memorial service will be held at the Palu residence, 208 Grandview Drive, on Saturday, December 4 at 3:00 p.m.

MEMORIAL SERVICE

Our wonderful cousins, Kelliann and Arnie Palu, have offered their home for our dad's informal memorial potluck. Here's all of the details:

WHEN: Saturday, December 4 at 3:00 p.m.

WHERE: 208 Grandview Drive, Bishop, CA 93514 (behind Inyo County/Jill Kinmont Booth Community School) - it's the first house on the right next to a dead-end street

WHAT to bring: Memories, BYOB and it's potluck style so here's the breakdown:
Last names A-I = main dish
Last names J-Q = salad
Last names R-Z = dessert

WHO: All are welcome! Hope you can come! If you are not able to attend, please send a story for the Memory Book instead!

The End of a Battle, but the War Goes On…

James Preston Tyerman passed away yesterday, Friday November 19, around noon. It was just 9 days after his 63^rd birthday.

My dad always hated hospitals so it is wonderful he didn’t spend his last moments there. He was in the living room in his wheelchair. Josh, Mom, and Aunt Linda were all there.

Roberta from Hospice came over within 5 minutes of my mom’s call to check his vitals to make sure he had gone to a better place and help with preparations.

This past week was a progressive decline… Just five days before I was here and he was still walking, with assistance. Since then he became bedridden. Friday was a rough morning - he was very weak, refused oxygen, and just couldn’t seem to get warm enough.

I am so relieved he is not suffering in such great pain anymore. It is not a way to live. We are happy he was at home, although this was a struggle for the family too.

We plan to spread his ashes over the sand dunes when the weather is better – perhaps in April. We might have an informal memorial service sooner …details to come. I am still going to put together the aforementioned "memory book."

I can’t believe this all happened in only about a year. Cancer is a terrible disease that should be a “war” we are spending energy, time, & money on, instead of these other dishonorable, futile wars. The hardest thing to watch is how cancer sucks the vitality from a person, especially someone that had so much verve.

My father’s strength will live on in us and his spirit will not be forgotten…

Soliciting Story Submissions!

This is an "all call" to any interested people/parties! My dad's sisters, Linda and Diana, have given me the idea to create a memory book of stories for my dad. Kelliann reinforced this idea today when she shared a moment she had with my dad a short time ago. She was visiting and he wrote asking her if she was short on time, and since she wasn't, he asked her to tell him a story. Out of all the things in his world right now, I think this gives him the most pleasure - listening to stories of our lives and, as Diana and Linda were recalling, life experiences we've shared with him.

So, if you have any thoughts, ideas, or full-blown stories - happy, sad, funny, etc. - we'd love to have them sent here to make a book to read to him. Please email them to me at jessit3@gmail.com or if you'd prefer to write something by hand, you can drop them by the Bishop house or snail mail them to me at:
Jessica Tyerman
5750 W.Centinela Ave. Apt. 124
Los Angeles, CA 90045

We look forward to your "submissions"!

Birthday Beer

Well I made it to Bishop at 11:00 on Wednesday, November 10 to "celebrate" what was left of my dad's 63rd birthday. To my slight surprise, my dad was already "celebrating" - my mom was finishing pushing some of a Keystone through his g-tube! The fact that it was a Keystone was the most surprising part - I guess it's all that could be scrounged up around here nowadays!

The next day (Thursday), my dad made a hand motion symbolizing "drink" and so I jokingly asked him if that meant he wanted a beer. He nodded. I told him I would go get some for him. Not long thereafter, he slowly got up and started walking out the front door. I tried to put his shoes on but his feet are still too swollen so instead, some leaves stuck to socks - no biggie. This time I was truly surprised when he walked to my truck's passenger door. He really wanted to go get beer. So we went, and got Bud Light, of course!

Later, I didn't know better than to give him the whole can - because, well, why not? He used to drink 20+ and still walk & talk straight! I think this negatively affected his behavior (mixed with all of the meds, of course). We were hoping it would help him sleep but unfortunately, it didn't have the desired effect. We've all been having odd sleep hours to keep 24-hour watch on him. And with that, we've all had some interesting moments with dad, that's for sure.

In pondering all of this, I guess an addiction is an addiction, but for my father I think he had an affection, appreciation, and affinity for beer. As Homer did for "Duff", my dad did for Budweiser. I never really asked him what he derived from drinking besides the obvious, but the more I think about it the more significant I think it was to him - just as much as cars, tools, and Nascar. Not that I'm justifying drinking heavily - I just know it was more than the act of drinking to him - it was a tradition, a comfort, a calling.

Many thanks to all for the birthday cards, thoughts, radio announcement (Aunt Linda, Arnie), haircut (Cyndi), and well-wishes. :-)

More ER, Rural Health Clinic Visits

I'm writing to catch up on a few things...

Last Saturday, 10/30, my dad did a repeat pull-out of his trach tube, so there was a re-run of the previous Saturday. There was a different doctor, though, so a few of the NIH doctors are getting practice, I guess! Even more so because he did it again, hopefully for the last time, later in the week. After this time they secured it with a more permanent tie... We still can't figure out exactly why he keeps pulling it out, but the general delusion seems to explain most of the problems of late.

My father insisted on going to the ER today during the day when he was with my Aunt Linda. Luckily, communication between family happened and my mom met them at the Rural Health Clinic instead. Here they know him and can react on a more informed basis. Dr. Brown prescribed him an antibiotic because he had a fever and his chin infection has worsened.

My mother thinks, and now the doctors seem to agree, that the cancer has spread into his brain. I'm sure the many medicines, and changes in medication, don't help the situation either. This will only be speculation because we canceled his appointments for his next round of CAT and PET scans (they were supposed to be next week). He didn't feel up to the trip and it would really cause a lot of unnecessary stress on his mind and body.

Even though I'm being "docked" at work, I will be home for my dad's birthday, Wednesday November 10.

ER Visit

My father somehow (still unclear to us as to how) managed to pull out his trach - yes the entire thing - this morning. Luckily, my mother brought all the pieces to the Northern Inyo Hospital's (NIH) emergency room because they didn't have the correct "parts" in-stock.

The first task was to thoroughly clean the unsightly trach. The doctor, "bless his heart" (as some of my family members would say), was new - not just new to NIH but new to the profession - he just finished his residency a few months ago. The "Hmmm... where is that and what do I do with it" banter between he, the nurse, and my mother was uncomfortably intriguing (in a fearful sense) as I sat beside my dad's cot and observed.

After the doctor suggested my mother be the one to put the trach back in since "she must be a pro at it", she corrected his assumption - she'd never done the outer cannula - we only change the inner cannula daily. Eventually, with the nurse's encouragement and my mom's directions, the doctor figured he'd "give it a go." After the fifth time the doctor had shared that he's only done this once - way back in school, the nurse shushed him, not wanting to freak out the patient! I don't know exactly how my dad felt but I was a bit afraid myself!

The first couple of attempts looked extremely painful, from my dad's expression. Then, luckily, the veteran ER doctor walked in, donned gloves, the other doctor stood back to observe, and within one minute the trach was back in. Yay - sigh of relief. I think we all felt better.

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.

Back Home

Jim is home and happy, and busy! He's back to fix things around the house - he has been pretty much since we got home a week ago!

He did great on the ride from Bakersfield - I needed to stop more than he did - and a great change in weather welcomed us in Bishop.

When we were getting everything set up at home we had a bit of a misunderstanding about the nebulizer. Airway Medical told us we needed the Albuterol solution but Dr. Trang didn't prescribe that. So we went through a series of actions to get the little vials from Dwayne's to later find out he doesn't need them - that he can simply use distilled water instead, as he had in Bakersfield. LOL Goes to show you can get a prescription if you are persistent, I guess.

My dad had several doctor appointments in the past week - for his eyes with Dr. Hiroyasu and a check-up yesterday with Dr. Boo. All seems well. He's been sleeping better overall. He now weighs 172 pounds, which is normal for his height, and a wonderful change! The next doctor appointment is back in Bakersfield on Monday with Dr. Gorla (radiology) and Dr. Shambaugh (chemotherapy). Hopefully more positive change to report soon...

5-14-10 - Homeward Bound

The appointment with Dr. Trang was rescheduled from Wednesday to today at 3:00. He seems to have his own personal family issues going on...

My mom has been coordinating with Airway Medical (name?) to make sure he will have all of the necessary machines.

I will be on my way to Bakersfield with chair in truck after work. We will load up machines, nutrition, supplies, etc. to transfer the care setup to Bishop.

Tomorrow (Saturday) my dad and I will be on our way to Bishop - time for him to go home, finally! Yay!

5-4-10 - Day 33? of Radiation

Well we've made it to May and I'm losing track of the radiation appointments, but at least they're happening! In fact, there are only 5 left, along with one more chemotherapy treatment. Then my father will see Dr. Trang again on Wednesday, May 12, the same day as the final scheduled radiation treatment.

So, keeping fingers crossed, it sounds like he might be able to make the trip home that following weekend, May 15-16th. We are in the process of making arrangements to get everything moved back, set up, planned out, etc. So, more details to come!

4-28-10 - Day 27 of Radiation

Just a quick note: they started doing radiation again! So hopefully we are back on track. We will keep our fingers crossed that it continues.

I think we've found a few possible chairs for the Bishop house... We are seeing which one will work out best!

4-26-10 - 4th Chemotherapy Treatment

Still no radiation treatment today. The burns are looking better overall but there's still a raw spot so they've delayed radiation until Wednesday at the earliest. Chemotherapy went fine - I heard my dad was in better spirits so that is wonderful. They have also scheduled at least two more chemotherapy treatments for the upcoming Mondays while he will still be in Bakersfield, since the radiation is pushed back at least for a couple of weeks now. Take it day by day...

"Positivity is a Necessity"

Just a bit of positivity...

"Cancer is a word, not a sentence." -- John Diamond

"The most important thing in illness is never to lose heart." -- Nikolai Lenin

"Positivity is a Necessity!" Lennon wannabe video (funny but nice!):


(I realize these are women with different cancers but the message still resonates...)
http://www.chacha.com/video/222772936/how-a-positive-attitude-helps-you-fight-ovarian-cancer

http://www.chacha.com/video/222773305/keeping-a-positive-attitude-during-cancer-treatment

4-24-10

I'm here in Bakersfield with my dad. This week has been hard since he hardly had any treatment due to the burns on his collar and neck area. They are looking a little better now but his spirits are down. He is bored and wants to go home, and not having an idea of when that will happen makes passing time difficult. We are all looking for a nice recliner Lazy Boy style chair for when he returns to Bishop so if you know of any good deals, also please let us know!! Thanks!

4-20-10 - Meeting with Radiation PA

Some not so good news today... Although the chemotherapy went well yesterday, my dad is having a reaction to the radiation. He has developed a skin condition - basically, it is a burn. It's "puffy" skin around his collarbone on both his left and right sides - extending to his cheek/jawbone. Rodney, the radiation Physician's Assistant (PA), said it is more common for ENT patients to get these burns than other cancers because of the proximity of the tumor to the skin - often with other cancers, the radiation is trying to go deep into internal organs, etc. The dead skin will eventually come off and he has antibiotics and an antibacterial burn medication (Silvadene) to use in the meantime. Cavalon (a sting-free, alcohol-free liquid barrier film that dries quickly to form a breathable, transparent coating on the skin) is a preventative measure he can use that wouldn't have necessarily stopped the burns from happening all together, but they could have lessened the severity... Maybe next time Dad?

So, they did not do a radiation treatment today (what would have been his 27th), and postponed any more until the anticipated "peak" of the reaction mellows out, which is also expected. The next possible day for radiation could be Thursday. It's okay to not have it for a while because the radiation continues to kill cells even after the actual treatment.

This pushes back the treatment overall and we're not sure about the timeline, but it looks like there could be about 3 more weeks (2 of radiation) left. I am planning on going to visit in Bakersfield this weekend.

4-19-10 - Day 26 of Radiation, 3rd Chemotherapy Treatment

Just a quick note - more tomorrow... So there are only 3 more radiation treatments left and one chemotherapy treatment. Tomorrow my dad will meet with the doctor to determine next steps and the plan for the future.

4-14-10 - Day 23 of Radiation, Dr. Trang Meeting

Aunt Linda joined my dad and me for the meeting with Dr. Trang halfway through the process (when he likes to meet with his patients). We clarified some things and got some questions answered.

Good news!

• Dr. Trang said the tumor was way smaller – he said it looks like it has been reduced about 50% or more! He was very happy with the improvement in my dad’s general condition.
• My dad has gained some weight! He weighed in at 160 pounds. The increase in caloric intake (the 1.5 Cal instead of 1 Cal nutrition) and the Ensures between meals are helping!
• He can now breathe somewhat through his mouth!

General Information:

• There are two more rounds of chemotherapy scheduled for the next two Mondays, the next is early (7:00 a.m.) on the 19th. There will not be any more chemo thereafter.
• It is up to the radiation team when and whether or not to do the CT scan and re-mapping, although they just did one last week, they might do a more “fine-tuned” procedure again tomorrow.
• There will be at least 5 more radiation treatments and then Dr. Gorla will reassess what plan to follow from there on out. Two or so of these treatments will be a “boost” radiation by Dr. Desai, which spares more regular tissue. Sounds powerful!

Future Implications:

• Therapy could improve his speech eventually but because of the great damage to his tongue, it will never be the same.
• We hope to move towards a combination of “comfort food” through the mouth and supplementing that with the necessary nutrition through the feeding tube to promote weight gain.
• The trach tube will stay in until he can breathe well through his mouth. It is an easy in-office procedure to remove it and then the hole closes up over time.

In terms of heading home to Bishop soon, the trach suction will still be a necessary component, even if it is for the mouth eventually when the trach is taken out. There will be no need for the hospital bed. Many of the other materials, though, will still be necessary and Dr. Trang can order them so that we have a prescription to get them in Bishop.

My dad will have another meeting with Dr. Trang on Wednesday, May 12 at 9:00 and possibly another in June for follow-up. He will continue to see him every 2 months or so. Trang will remain his primary care doctor, even though he will be back in Bishop – he will come back to Bakersfield for the appointments. There will be no more chemo or radiation at this point, although the radiation will keep killing the cancer cells for about 6 weeks after the final treatment. 3 months after the last day of the radiation treatment, Trang will do a PET scan (and not a day earlier – he said no one else should do this), which is where they have radioactive dye go throughout the body to make sure that the cancer has not spread to other areas and to visually see the areas affected.

And on we go...

4-13-10 - Day 22 of Radiation, Post-2nd Chemotherapy Treatment

Yesterday was the second chemo treatment. This information is coming straight from my dad, as I am sitting here in Bakersfield! He isn't taking any pain medicines besides acetaminophen (I wish he would but they all seem to bother him in some way or another). But there is some good news! (see PROS below...)

CONS
- It takes long to begin ... They have to draw and analyze the blood and add what is needed (e.g. if he is low on potassium they will add it to the IV bag, etc.). This can add an hour to the process.
- "You just sit in a big chair and look like a dummy," he says, but I doubt this!
- It takes about 4 hours total for the process, at this point in the treatment. Yesterday he went in at 8:30 and got home at 2:30, which included a radiation treatment.

PROS
- The tumor has shrunk! We will see how much tomorrow...
- After tomorrow, they are going to remap the radiation treatment (for the third time) in order to pinpoint the worst areas and work on those.
- Eventually the time to administer the chemo should be shortened.

Tomorrow we have the appointment with the ENT Dr. Trang so there should be more information then...

4-8-10 - Day 19 of Radiation, Meeting with Chemotherapist

Yesterday was somewhat of a downtrodden, disappointing dad for my dad so I hardly felt like posting anything. I think he had a reality check that all hits us at different times, in different ways.

...Today sounds more promising, post-Dr. Shambaugh (chemotherapist) meeting. Although he told me he had a list of questions ready (ah-hem, Dad!), I guess he did not so I am thankful Staci and Dion did! The doctor explained why it was important to continue chemotherapy because of his aggressive tumor and the fact that the chemotherapy and radiation work well together. This is because with radiation, there’s only a certain amount of tissue that can be killed (his radiation = highest dose possible, thus low-dose of chemotherapy to balance things out ).

The reality check (according to Shambaugh): if he were to quit everything (the chemo and radiation) today, he would have perhaps 6-8 months to live. On a scale from 1-10 (10 being the worst), he is a 7 or 8. Although, there is hope for change. Shambaugh said we wouldn’t be having this conversation if he were a 9 or 10. If he doesn’t have the treatment or the cancer comes back after treatment, it may go external. Although there’s not as much pain involved in such a scenario, because of the many blood vessels in the head, throat, & neck the tumor could burst a blood vessel and cause death.

Our "perfect world" goal is to reduce this cancer to a remission stage (it would be magical if it went away completely). In remission, his tongue will be thickened but possibly able to function. His trach tube might be able to come out but it depends. So, in attempt to achieve this goal, my father agreed to try chemo again. His next 5-hour appointment is on Monday, April 12.

So overall, this meeting had a positive result; conversely, it delivered plenty of negatives and unknowns. It is amazing the comfort one can feel from simple communication. Although the triad "pow-wow" between the three doctors that we envisioned doesn't exactly work that way, Dr. Shambaugh said he has spoken with both Trang and Gorla. I am also accompanying my dad to his appointment with Dr. Trang this coming Wednesday, April 14. To me, there is comfort in knowing, even sometimes if it is hard to hear.

In terms of blood results and status, my dad is slightly anemic, which is definitely contributing to his fatigue, so they prescribed Procrit to help. As for feeding/nutrition, the calorie count was increased and Dr. Shambaugh encouraged adding other things as well (protein drinks, etc.). He has some minimal hair loss - just thinning from the outside corners of his mouth. The doctor informed him, to his surprise, that this has nothing to do with the chemo - it is from radiation; and it is only expected to be minimal. *fingers crossed*

4-1-10 - Day 13 of Radiation, 1st Chemotherapy Treatment

The chemotherapy is a low-dosage being administered intravenously (through an IV bag). Aunt Linda stayed with him all day, minus a bit of time for lunch, and said he did well. Eventually they would speed up the dosage so that it does not have to be an all-day process but initially they keep patients there to monitor them closely for reactions. We are not sure about the full effects yet, but he was not nauseated by the treatment. Of course, it is not a good feeling and thus, it is something he is not enthusiastic about. There are two more treatments scheduled for the next couple of weeks; however, he is resistant to having them done.

LINKS & CONTACTS

RELATED LINKS

National Cancer Institute (NCI): 800-4-CANCER

http://www.cancer.gov/cancertopics/pdq/supportivecare/oralcomplications/Patient

American Cancer Society (ACS): 800-ACS-2345
http://www.cancer.org/


Cancer Care: 800-813-HOPE
http://www.cancercare.org


Gilda's Club: 888-Gilda-4-U
http://www.gildasclub.org


National Coalition of Cancer Survivors (NCCS): 877-NCCS-YES
http://www.canceradvocacy.org

National Institute of Health (NIH): 888-346-3656
http://www.clinicaltrials.gov


Oncology Nursing Society (ONS):
http://www.thecancerjourney.org/

American Society of Clinical Oncology (ASCO): 703-797-1914
http://www.cancer.net/

Strength for Caring: 888-ICARE-80
http://www.strengthforcaring.com

Support for People with Oral & Head & Neck Cancer: 800-377-0928
http://www.spohnc.org

Dealing with side effects of chemotherapy and radiation:

http://www.cancure.org/help_side_effects.htm

3-29-10 and 3-30-10

3-29-10 - Day 11 of Radiation

As I walked in the CBCC (Comprehensive Blood & Cancer Center) I was greeted by receptionists who seemed resistant to connect me with a medical social worker. Many thanks to Kathleen Stout, a cancer survivor, for recommending this route because I think she will be a great advocate for my father. Unfortunately it was not so easy, no thanks to the CBCC front office staff, to get connected with her.

After the medication messup (having him crush up time-released capsules of pain medicine to put in his feeding tube to a point of dosage that could have killed him until finally he noticed the pharmacy put on a "do not crush this pill" tab) and lack of communication between the different doctors, I do not feel confident about the capabilities of some CBCC staff. So we shall proceed carefully as they seem to expect us to take the reins and make things happen.

Elle, the radiation nurse, was very kind and helpful in answering my list of questions. She was efficient about prescribing the medications my dad requested and encouraging him to try the Duragesic pads for pain instead of messing with crushing Motrin and Tylenol.

3-30-10 - Day 12 of Radiation

Staci had a breakthrough with the chemotherapy department today, thanks to her and Shannon, the social worker.

His first, and maybe only, chemotherapy appointment is scheduled for Thursday, April 1. The family orientation is at 8:00. Aunt Linda and Staci are planning/ hoping to go.

First Post ~ Background

The intention of this blog is to keep all interested parties involved and informed about my dad's cancer. I really hope this blog facilitates communication and support!

- Jessica

Background

* In early October, he was diagnosed with stage 2 tongue cancer: invasive-moderately differentiated squamous cell carcinoma.

* After meeting with many doctors and trying many herbal, natural treatments, he settled on a treatment plan with three doctors in Bakersfield. The ENT (ear, nose, & throat) doctor, Trang, is overseeing the group. Dr. Gorla is the radiologist and Dr. Shambaugh is the chemotherapist.

* By early February, after an endoscopy, the diagnosis increased to stage 4. His tongue had become so swollen and infected that the doctors offered surgery as an option, and a combination of radiation/ chemotherapy as another. He does not want the surgery as it will take out his entire tongue, voice box, and perhaps more.

* Because of the swelling and difficulty breathing and swallowing, he had to have all of his teeth removed (to prevent future infection), get a feeding tube, and a trachea tube put in surgically. This process left his body weak, although not his spirits!

* Early March - he was in the hospital for 10 long days after the surgeries. We all visited and hoped he would get out sooner but they kept pushing things back because of fevers and increased heart rate, etc.

* The plan is for him to have 35 radiation treatments (once a day Mon.-Fri. for 7 weeks) and 3 concurrent chemo treatments while he stays at The Harris house with Staci, Dion, Derek, and Erin.

* After the treatment he wants to return home as soon as possible to Bishop.