13th Session

Today was more difficult for me. As I said before, they want you to have the radiation on a full bladder to cause less side effects. It is always difficult to know when & how much to drink so there is enough in the bladder without making you want to scream, you have to pee so badly while still being treated.

Today was one of those days where I wanted to scream, kept crying out to God to help me hold it until I could get to a bathroom as time seemed to slow way down. They were running late as my bladder continued to fill. Thank God, I did make it without leaving a trail behind me as I left the radiation room!

I went shopping for a gift for a friend on my way home & what I was looking for, each store I went to was out of it. Then I found myself at Sam's Club and found something there. The store queues were all full of at least 10 persons with full carts while I only had one item, so I went to see if I could pay for it at the photo counter. The person at the counter asked me if the customer service counter had sent me there. When I said, “no” (even though there was NO ONE at the counter other than myself) the bored cashier said he would not “be able to” ring it up.

So, I went to the customer service counter and asked if I could pay for my purchase at the photo counter. She said, “I don't care”, so I went back to the photo counter. This time there was another person behind the counter who was waiting on a Mexican family buying a $300. camera. I patiently waited until he was through with that purchase. When I told this cashier, who was bored as well that the customer service person named Brianna said I could buy my purchase there, he told me, “well, she has to come with you over here”. I went back to the customer service counter and Brianna was gone and some new woman was there who said to me before I could say anything, “Do you want to buy that at the photo department?” I laughed sarcastically as I said, “I would rather have the business card of the store manager so I can write to your headquarters.”

She said they did not have any cards, but would page him. TEN minutes later, he still wasn't there, so I reluctantly went to the end of one of the long queues as I could not just leave, as I needed the gift for tomorrow. Brianna, the woman who had been at customer service was my cashier!

From Sam's Club, I walked to Ala Moana to take the bus back to Manoa and all the seats were taken, so I had to stand. Soon after I got on the bus, a German man's luggage (which is not permitted on city buses) fell on my feet! I was not having a “Jesus day.” This was my 13th radiation session. If I were superstitious, I might think that helped to contribute to the day I wanted to forget.

Financial Assistance Frustration

When recently diagnosed, I called the American Cancer Society so see what they could do, not really knowing what they did. I asked about financial assistance & they offer a $50. gas card to help with transportation that one can have each calender year. I am on my second $50. gas card since their fiscal year begins September 1st.

I was also directed to the Patient Advocate Organization as a source for financial assistance. I applied for a grant and received a letter in April saying my application had been approved and that I could access up to $1,500. per grant period. I was elated that I would have less financial stress.

Since that time, I have had hormone therapy & just had my 10th of 37 radiation treatments. I have not been able to access a penny of this grant as it does not include co-pays for radiation therapy & my office visit co-pay covered the hormone injection.

It seems there are so many strings attached to treatment that the grant becomes useless in the entanglement of bureaucracy. Obviously, whomever makes these rules has not been where I am, needing financial assistance while going through radiation treatment.

I wrote both organizations and politely expressed my frustration. Even though, I am sure nothing will be done, I felt better in voicing my opinion on the useless grant in my time of need. I wonder if those who donate to this organization knows of the strings attached?

I was kind of shocked today when a friend wrote me and said, "That's exciting to learn that you are so far through your treatments. I pray the rest of them go by quickly". I shared what the person said with a fellow patient today who could relate to what I was going through. I have not even gone to 1/3 of my radiation appointments, so to think I still have so many left is overwhelming! The woman I spoke with said she had seven appointments left. I told her, "Oh! That means there is light at the end of the tunnel"! Only one who has gone through this experience can relate.

In today's session, I broke out into a sweat several times due to the hot flashes from my hormone therapy, even though it was cool in the chamber. I am eager for the hot flashes to stop!

A Ray of Sunshine

In between rain showers, I headed to the bus stop for my 8th radiation treatment. I kept walking to a few more bus stops further down the route since I got there early and hate just standing there. In the mean time, the sky opened up & poured. I sought shelter beneath the limbs of a mango tree while waiting.

When I walked in to the radiation room, the receptionist smiled and said, “You're like a ray of sunshine”. I thanked her and then asked why she would say that? Perhaps because of the doom and gloom in the waiting room? She said she had had a bad day & that she often tried to interact with patients and all too often they don't respond, but that she can always count on a positive response from me.

I asked her if I should go tell the other patients waiting there to “lighten up". She responded, “Maybe your energy will rub off on them”. I told her, “Actually, I often pray for the other patients as I wait with them as I feel I am doing something positive that way”. I then added, “Maybe someone might be doing the same for me”. She said, “I'll remember that”, as if to tell me she would say a prayer for me. I have never seen a smile or heard laughter from any of the other patients my 8 visits thus far to the waiting room.

It's by God's grace that I might be seen as having a positive attitude, as I don't “try” to. I just ask for God's grace each day as I go through it. I haven't really been sad or depressed while I am in treatment since the first few times, as I am not there long and the people who work there have been friendly.

29 treatments to go. I hope I can continue to come across as positive and cheerful. I won't wear a mask if I feel lousy.

Seventh Treatment

Today I felt more tired at the thought of the monotony of my daily schedule, but don't think it had to do with the radiation. I laid down for 20 minutes before I was to catch the 3:15 bus to make my 4:20 appointment. When I got to the bus stop down the long, steep driveway, there was a notice that the bus was not stopping there as the water company was working on a water main break on the route near by. There was not time to walk the few blocks to where I could have caught the bus and still make it on time.

Luckily, I have a car, though I'd rather take the bus. I was sweating by the time I got back into the house after walking up the steep driveway in the Hawaiian sun. I now had a half an hour until I had to leave by car to make the appointment so I had time to make a large, iced latte before I had to go.

The Tomo technician wants me to have the radiation done on a full bladder (for fewer side effects), which is difficult to do. If I drink a lot before taking the bus, I have to go before the radiation. He can always see if my bladder is full by the CT scan they do every day before the radiation begins.

I remarked to the receptionist that it seemed like I was in the movie “Groundhog Day” since I come at the same time very day & see (mostly) the same patients in the waiting room who have their appointments at the same time each day as well.

As I went in the changing room to change into the mandatory, undignified hospital gown and white robe, I thought of the person who has to do the laundry and fold all of those items each day. I would not want to be them!

When my name was called, the Tomo technician told me I was his favorite patient. He then went on to tell me it was because I was his last patient of the day. I am glad to have the weekend off. Thirty treatments left to go. So far, it seems there has been no side effects, for which I am thankful for!

My Fourth Session

Today was my fourth day of radiation and I felt the least anxious about it.

I asked the receptionist a question when I got there & she told me, “You sound like Steve Martin”. I told her, “People used to tell me I sounded like Paul Lynde from Bewitched” and then did an impersonation of him. She and another woman behind the counter started laughing really loud. I responded, “Oh, sorry, this is not a place of laughter, but a place of tears”. The receptionist said, “laughter is good”, and I agreed that it has medicinal value.

As I laid in the radiation chamber, I thought about how once the unknown becomes familiar, it ceases to be frightening.

I saw an elderly Asian woman in the elevator with me & her husband. I asked her if she had been doing radiation long & she told me about a month. She said she had done chemo earlier that day as well and was so tired. I realized that I had it MUCH better than most, and was grateful.

I was told I will need 37 radiation sessions in total, and if I figured it out right, with their being closed Thanksgiving & Christmas, my last day will be December 29th.

My Second Day

I was not planning to write anything today but I wanted to report that as I was painting and listening to music, I was emotionally overwhelmed with the whole radiation ordeal. This surprised me as it had not bothered me all that much before I commenced yesterday. I was teary-eyed about it when my doctor friend called me to see how I was doing. He told me it is usually much harder emotionally when going through it than anticipating it. He was so right! He was very encouraging and had me laughing before we said our goodbyes.

While I was painting, I started thinking about how radiation is similar to God's presence in out lives. You may not see or feel Him, but he is quietly working behind the scenes to bring healing and a better future.

As I have gone to radiation the past few days, the song Grace By Which I Stand, by Keith Green keeps going though my mind.

Today's radiation was much less stressful. I almost fell asleep in the chamber. The worst thing was that it was about 3 hours round trip by bus for the whole ordeal. I am glad I have the weekend off!

My First Day

I decided last night to write a blog about my journey with Tomo radiation for people who follow this journey after me and might want a firsthand account of what to expect. Each person's journey will be their own and will be different from mine. I won't write every day, but perhaps at mile-points or significant observations.

This is the day that seemed so far off in the future since my radical prostatectomy surgery in late March of this year. It would have been started a few months ago, but I asked if I could put it off without endangering my health in order to teach two Saturday sessions of botanical illustration in October that I had to cancel already because of the surgery. Since I started hormone therapy as well in August, my urologist/oncologist said that that would be fine.

My appointment was supposed to be yesterday, but I got a call from the radiology clinic at Queen's hospital who told me that Kaiser, who I have my health insurance with had approved the request for Tomo Radiation. She told me that “Kaiser hardly ever approves Tomo, as it costs them twice as much”. She also told me that “it is more precise and causes less side effects as traditional radiation”. I felt some comfort in that, and that God must have allowed my application to find favor with whomever decides such things.

Last night, I finished the little booklet, Trusting God in the Hard Times – Lessons from the Life of Elijah, by Bill Crowder. I was hoping it would give me some peace as I face the unknown. It helped a little, but living an experience and how you deal with it is never like reading about the similar experience of another or what attitude to have.

I woke to rain this morning & was hoping it would clear off so I could take the bus rather than drive. About a half an hour before I was to leave, the clouds parted and the sun brightened the valley where I live. Once on the bus, it seemed surreal of what waited for me at the end of my bus journey. I felt numb. Suddenly, though I have not been experiencing much anxiety about radiation, I felt overwhelmed and knew, though I was promised the prayers of family & friends, felt totally alone in the journey. Several people, as I have faced surgery, hormone therapy, radiation & an unknown future have told me that they are surprised how well I have been taking it. I do not know how they expected me to react. I only shed some tears the day I heard the prognosis from the urologist/oncologist.

I brought the thick packet from Kaiser explaining the cost and benefits of their 2010 health plan for something to read. The first booklet I opened had a photo of my family practice doctor with whom I have formed a friendship and who had e-mailed me earlier that morning to tell me he had me in his thoughts and prayers. I don't think this was a coincidence with all the materials that were in the packet. I was not evening thinking I would see a photo of him in the enclosed printed matter. As the bus got closer to Queen's, I felt myself break out into tiny sweats of hot flashes several times from the hormone treatments.

When I checked in at the front desk of the radiology department, I asked if I could stay in my shorts and tank top rather than change into a hospital gown and white robe as I had done on a previous visit. She called the Tomo treatment room and was told I would indeed have to change into the hospital gown and robe. So, I changed and sat down, making sure my knees were together amongst about 15 other persons in the waiting room. I also took a drink of water, though not thirsty, as I was advised to have the radiation on a full bladder for fewer side effects to other organs.

I had tucked the little booklet in my bag on trusting God I mentioned earlier so I could leave it amongst the other reading material in the room as I said a quick prayer that the right person, to whom it would minister most would find it. I also started saying silent prayers for the other patients I saw in the room that I was reminded to do my last visit to the radiologist.

Finally, my name was called and I was lead to the Tomo radiology room. It looked similar to the CT scan machine that had scanned me two days the previous week. I asked if I could stay in shorts for my upcoming visits but was told that they might bunch, so I best change into the hospital attire each day. He then took a photo of my face with a digital camera he said was used for my file. Each time they were going to radiate me, my photo would be on their screen as well, to make sure they were giving the right person the right treatment.

The Tomo technician asked me to lie on the table where they had form-fitted something to hold my legs in the exact position each time, the previous visit. The technician & his assistant then put a towel across my private parts to give some feeling of modesty during the procedure. They told me I would need to lie perfectly still, but if I needed them for some reason, to raise a hand or call out, as there was a microphone in the chamber, but they would be in another room.

I was happy that I did not have to have the tattoo marks that I feared (and was told I would get today by the person who did the CT scan the previous week), but they would use the three marks that had been put on me the previous week which has small circles of tape on them to help keep them from washing off. After re-situating where the beams would go, it was time for my first radiation treatment and I was alone in the chamber, as well as the room.

I suddenly felt very alone and felt tears well up in my eyes, with one slowly falling down my cheek. How I wanted to be strong and not be filled with self pity even in this battle with cancer. I then heard several times in my mind the verse in Hebrews 13:5, “I will never leave thee, nor forsake thee”. I was comforted by these words as I heard the machine start up which sounded like a loud vacuum cleaner in the room with gravel scraping together as the sound encircled my body. There was no physical pain and 7 minutes after it started, my first session was over.

I stopped to talk to the assistant to get a regular time to come back for my daily appointments and told her I preferred late afternoon. She told me I could come at 4:00, and would be their last patient for the day. I then asked her if people ever started a course of radiation & decided not to come back. She told me that though it is not advised, yes, some people do give up. I asked if they might do that because they felt good, and she replied, “or because they felt bad”. I told her I did not intend to stop treatments. I then went to change back into my clothes and looked to see if the little booklet was still on the table where I left it, which it was. The receptionist said with a smile, “See you tomorrow”.