My LAST Session!

Finally! My 37th tomo radiation treatments are history! The time did not fly by at all. The worst part of it was not the actual radiation, but the monotony of the average three hours of my day (with transportation) that was dedicated to the treatments. The side effects were not too bad. The radiologist told me today that they should be gone in about a week & the fatigue in about 2 weeks. I have really felt worn out the past couple of weeks. At least it did not begin when I started.

I think it helped to silently pray for the other patients in the waiting room each day while I waited for my turn. It is good to get your focus off yourself & your own problems. I saw a lot of patients in a lot worse shape than me and who were going through both chemo and radiation.

One thing I found that in the beginning, for the most part, as friends & family find out about your cancer & treatment you hear from them a lot. As time goes on & you are still in treatment, you hear less and less. You have to realize life goes on & does not revolve around you & your illness even as you face it daily. You just have to pray every day for an extra dose of God's grace.

I got a $50,000. bill from November's treatments today of which I am only responsible for $270. of it! Thank God I have health insurance!

I will need follow up in three months, which I think will be to see if my PSA is still at or near zero. How I pray it is the end of it! I can not allow my mind to run ahead of me, but must make the most of each day God has given me. I pray that as I enter 2010 in a few days, I will enter it cancer-free!

I plan to spend New Year's Eve with the bus driver and his family who took me to & from treatment almost every day who is now a new friend. I'll have to take a nap, of course!

Fatigue

There are two more sessions of radiation left! The fatigue has set in off and on for the past few weeks. Several days, I HAD to lie down. I just felt too exhausted for anything. I feel some better today, but the weekend was kind of rough.

I wish I could say the time has flown, but it hasn't. It just seems to go on and on. I am just grateful the side effects have not been worse than they are. I am grateful for the technology to attack the cancer. I just pray I enter 2010 cancer-free! The people at the cancer centre have been kind for the most part. There has only been one nurse who never smiles and shows no personal interest in my battle with cancer.

Christmas Aloha Attire

I was wearing my Christmas aloha shirt when I walked in the Queen's Cancer Centre for my 33rd radiation session. Yesterday, I was able to be seen at 4:00 instead of the usual 4:20, so I went in early again. One of the three receptionists commented on my aloha attire & asked where I was going later. I remarked, “Isn't it enough to wear this for you all”? They all sighed & one of them said, “Can I have a lock of your hair to clone you?" They are always very kind and friendly. Then I had my photo taken with one of them. If they give me a copy, as promised, I will post it.

Today was not my lucky day in getting in early. Twice, someone came out & told me they were running late as the Tomo machine was not working properly. I finally got in at 5:00.

I was very tired today. I had spoken earlier in the day with an acquaintance who had a high PSA level and was going to have to have a prostate biopsy. He told me today that no cancer was found in any of them, so thank God for that! I would not want anyone to have to go through this journey I have been on!

Another Milestone

This was my last full week of radiation. I do not have to go in on Christmas Day and then just have two days the week after Christmas. It does not sound like much left to one who is not experiencing it, but seems like a long time still, to me. Six days of this monotony left!

I am grateful that there has not been many side effects. After they started concentrating on a smaller area, for a shorter period of time, the side effects have lessened as well.

I try & not get ahead of myself and start worrying that this won't be the end of it as worry won't change whatever circumstances lie ahead for me. I am supposed to have my PSA checked again a few months after radiation to see if it is still zero, or close to it.

Just as in the beginning of this journey, one day at a time.

The HIGH Cost of Treatment!

I am attaching a bill for ONE session of Tomo radiation (click on image for larger copy)! Thank God, I have health insurance! I just got a notice from Kaiser regarding next year's policy. Thank God I read the fine print! If I kept my current policy, it would cost 20% of the total bill for radiation (over $400. per session!!!). For just $20. more a month, I can continue to pay just $10. per session. If I did not already have cancer, I probably wouldn't be upgrading that $20. a month! My radiation will be finished on December 29, but that is no guarantee I will not need more in the future, unfortunately.

It was a difficult weekend. I do not know if it was the result of the radiation, but I felt very fatigued, with body aches, but no fever. I feel a lot better today, but not 100%. I am grateful I did not have to go in for treatment those two days! Today is treatment # 26. After today, “just” 10 left!

I Can't Find Myself!

When my regular bus driver arrived at my bus stop he remarked, “Where were you yesterday? I wondered where my friend was”. It was nice to be missed.

As I was taking the elevator down to the radiation department for my 26th treatment, there was an attractive Asian lady sharing it with me that I have seen most days I have gone in who was there for treatment as well. I asked her how many she had left and she beamed, “Today is my last”. I told her I prayed that it would be the last. She told me she hoped it would be my last battle with cancer as well.

When we arrived at reception, she took out her card to pass through a scanner to show the radiologists she'd arrived. As she was looking in her purse for her card, she remarked, “I can't find myself”. I replied, “none of us can”, and several people near by burst into laughter. I gave the receptionists some homemade shortbread I'd made earlier in the day.

I knew that this would be my first radiation that targeted a smaller area, but was surprised when it was finished in about 4 minutes. What a wonderful surprise! I was on my way and have 11 left. Again, it is so good to not have to go in for the next two days over the weekend!

Milepost Twenty-Five

Today marked my 25th radiation treatment. Starting tomorrow, until the end (37 in all), they was focus on a smaller area of radiation, which will mainly be where the prostate was. My doctor said beginning Monday (today is Thursday) I should see fewer side effects, but they have been better than they were a few days ago. I am taking Lomotil, which has helped the big D. One more day until the weekend off! My bus driver friend invited me over for New Year's Eve.

It seems every third person I have talked to about radiation equates it with chemo. As of now, I am thankful I haven't needed chemo. Today I went in a few hours early for treatment as there was a cancellation. It was the first time I saw a child in the waiting room who is going through treatment as well, which made me want to cry.

Hawaiian BBQ and Side Effects

First of all, on a happy note, I went to my bus driver's home for a Hawaiian family BBQ on Saturday night & had a great time. The food was so ono (delicious) including steak, short ribs, lamb chops, parrot fish caught that morning and chicken. I brought homemade whole wheat rolls, kim-chee and a homemade lilikoi (passion fruit) meringue pie. The hours FLEW and the evening was perfect. Cool, no wind and lots of stars out once the sun set. Their second grader even did some hula dances for us.

Today was my 22nd radiation treatment. It now burns to go to the toilet at both ends and have started getting diarrhea, which was expected. I meet with the radiologist every Tuesday, so will talk to him about it tomorrow & see what I can do for relief. The Tomo technician told me that after my 25th treatment, they should radiate a smaller area, which might help alleviate the symptoms somewhat. One day at a time...

BBQ Invitation

I survived treatment number #20 today. At least I am finally past the half way mark! Earlier in the day, I got a letter from Kaiser saying that Queens Medical Centre had billed them for ONE CT scan they did on me right before the radiation commenced. They were billed $2,554.00 and my portion is just $10. 00. Thank God I have health insurance!

Yesterday, I brought my smiling & upbeat bus driver a loaf of homemade cinnamon bread that was still warm from the oven. Today, he said how much he & his family enjoyed it.

Today, he asked me where I am going every day, as he is usually the one to pick me up on the way home about 2.5 hours later. I told him I was going in for radiation for prostate cancer. He seemed shocked. He told me his father had died of advanced prostate cancer, but they probably did not find it sooner as he also had had Alzheimer's. I told him that it was important that he be tested for it as those with prostate cancer in their family are 50% more likely to get it themselves.

He was the one who picked me up again today on the way home. During my treatment, he had called his wife to tell her that he needed to be tested, but she said that he'd been tested less than a year ago. I told him that that was good & that he can sleep better tonight.

We still hadn't even exchanged names when he invited me to a BBQ at his house in the valley next to the one where I live so I can meet his wife. I told him my name & he told me his name was Warren. I found out we are the same age. He's been driving the bus over 20 years! I was surprised this man I do not know other than riding on his bus would invite me over. I told him I would bring a homemade lilikoi (passion fruit) meringue pie.

Stay Away from Toxic People!

Last weekend was the most difficult time for depression with this whole cancer thing. I was suddenly overwhelmed with it all. Also, I was due to get my second of possibly three hormone injections on November 19, but it has been a week & my urologist/oncologist has not responded to my e-mail. I called his office & was told he was on vacation until December 7 and there were no appointments available until JANUARY! I told my radiologist yesterday & he called Kaiser urology for me & in minutes had an appointment for me today with another urologist/oncologist.

Sunday, I had a discussion with one of my house mate's friends that was not encouraging! After he told me "he had the gift of healing", I asked him to pray for my cancer and all he wanted to do was argue about how I needed to renounce generational bondage for four generations so I may be cured! He said, "God wants to heal EVERYONE". I told him that sometimes God does not answer prayer in the way we want Him to as He sees the whole picture and can sometimes use our circumstances to bring about His will.

A little later, he asked me if I had thought about what he'd said and what I had to say about it. I told him that he came across as prideful and what he said was not biblical. After all of that, he never even did pray for me. Ironically, he then had to go because he was late for church!

Time & time again, I have found Christians to be more hurtful than unbelievers. At least I know their attitudes are not a reflection of the Saviour! One needs to stay away from toxic people when going through treatment!

On a more encouraging note, I usually have the same bus driver coming and going. He is Hawaiian mix & I have never seen him without a smile. We usually talk about food. On Monday, he gave me a fresh avocado & when I got to the radiology department, was given a chocolate brownie. God knows when we need encouragement. Today marks treatment number #19. It still seems like so long until #37!

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”.