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.