It turns out I didn’t even need to go. Dr. Kukunoor didn’t have the CaT scan results; they were never delivered. He told us he would get them by Friday and call us then. Kasha and I thought it fair enough, but I was pissed that the scan office didn’t get them over; or that Kukunoor’s office didn’t at least request them earlier. One full week?

The next day my doctor called midday to say the results were in. And the tumors were…

the same. No changes. Buster was still sitting there full-sized in my pelvis, smirking. The ones along my spine continued to dig in and threaten the health and mobility of my body.

“So there’s a chance the chemotherapy did nothing for me?” I asked.

“That’s a possibility,” said Dr. Kukunoor, “But the likelihood is that the chemo kept your tumors from growing any further.”

I was confused and even angry. Five months of hell for a likelihood. Chemotherapy is not easy. It saps your body and takes away life, all for the possibility of giving it back. It’s not a sure thing.

Jennifer from the Center for Pain and Supportive Care (my pain pump people) also called that afternoon, concerned about the level of pain I’d had. She asked if I would like to come in to the westside office and I said no. I thought about this and realized I’d have to get up sooner or later. Especially considering Michael’s (my brother) wedding the next day! I asked Ruth to call back and say we’d go. It turned out, as long as we arrived by 3pm we could get an appointment.

I called my sister to see if we could use her van. I figured I could lay down in the back of the van, instead of sitting upright in our car. She agreed to come down at 2:30, and when she arrived she had our dad with her. He was in town for the wedding and came along to help. I was dressed and stood at the edge of the bed. PAIN! I sat in a rolling chair, getting to the front door. I used the walker to get out to the front steps. My dad stood close by with his hands out, ready to steady me or catch me in any way he could. I started down the steps and, though there was pain, I managed to make it to the foot where the wheelchair was waiting. Into the van, Melissa had prepared a blanketed bed for me. I laid down all the way to the center, with Kasha looking back at me with concern every few minutes.

I got in to see Dr. Berger soon after arriving. He was really only able to increase the rate of my pain pump. I agreed to a 30% increase, along with a small increase in my bolus- the remote device I carried with me to administer pain relief. I was again told about the medication that may be able to help me with nerve pain. It wasn’t available right then, but I could have it added to my pump at the main office in Scottsdale.

I made it back home and into bed. It was nice to see my dad and Melissa. I had felt cramped up all week long, in pain with nowhere to go. I would be going to Michael’s wedding the next day. It was in doubt earlier, since the thigh pain began, but I would go after all. I was a groomsman, after all!

The wedding was a tremendous experience and I hope to tell you more about it soon. Michael & Shauna were married amid over 100 people. The audio and visuals made it all like a major performance. I was glad to be a part of it and be there for Michael. At the end of the night I told him how proud I was of him and hugged him.

Today I went back to the hospital for a dye test. I had been having extreme pain in my chest during intravenous pushes of an antibiotic. We couldn’t figure out why it was happening. A nurse who comes to the house said it could be due to a hole in the catheter of my power port. Oh, no. If that were true I’d need more surgery to take it out.

I arrived at the hospital at 9:30. Getting down the stairs of the condo hadn’t been hard. I’ve been getting into a groove the last few days. I went through admitting, then sat in the radiology lobby for just 15 minutes or so. Vince came to get me. I like him. He had helped me on my very first hospital appointment 5 months ago. I changed into my hospital gown and then was taken to the same bed I had on that very first visit for a biopsy.

Ruth was with me (my mother-in-law). We waited quietly. I hadn’t been able to have any food or water since 4:30am. My mouth was incredibly dry, like a cotton ball. I knew there was no use asking for a smidgin of water to ‘wet my whistle,’ so I just laid there.

I was taken back to surgery around 10:45am. The doctor had already come to my bed a bit earlier to tell me what would be done, so I was prepared. The surgery team put me on a very narrow slab and then attached plastic pieces along the side for my arms to rest in. An IV had been prepared in my hand, but this wasn’t used yet.

A large, square device hung over my chest, and on a screen I could see an X-ray of my chest, complete with ribcage, my power port, and the catheter running through my vein. The doctor came in, attached a needle to my port and squeezed dye into my chest.

“Yep, there’s a hole,” he said. “You see that?” he said, pointing to the screen. “As I pushed the dye, a very small amount  leaked out near the top of the catheter. It looks like we’ll need to replace your entire port.”

I went on to learn that the catheter had been threaded between two bones, causing it to weaken as I lifted my arm and finally create a hole. Damn, surgery. I agreed to it right away, though. The surgeon told me it may be possible to do it that day, if my insurance company signed off on it. I would need to wait about an hour as they worked it out.

I went back to my room and watched TV. Nothing really on, even though shows are geared toward poor folks like me, who are home from work due to an accident or some unfortunate state. Within 45 minutes or so we had an answer. Surgery had been approved. Soon I was wheeled back into the room and hooked back up. This was surgery with only local anesthesia, so I wouldn’t be knocked out.

I was given a series of painful shots around my port, and finally one through my jugular vein. I felt ripping, as though something in my chest was being forcibly removed. All of this was almost too much for me, though no going back now. I graciously fell asleep, waking to the voice of a nurse telling me it was over. Really? Yes, all done. I could go back to my room for food and liquids, a brief recovery time before going home.

I was given a turkey sandwich, chips and an orange juice. Ruth had bought me a large bottle of water. I finished it all, and in no time I was heading out the door, home free.

I found more info on the procedures of today.

Intrathecal Pump Implant
– www.spine-health.com/video/intrathecal-pump-implant-video

Having a Ureteric Stent
– www.bui.ac.uk/PatientInfo/ureterstent.html

PS.  Thank you for your prayers today!

First– don’t be alarmed by the picture. My eye sockets often appear hollowed out and gaunt (though there is a narcotic composure to my face I’m no longer comfortable with).  I actually feel pretty good lately, other than the pain in my waist and thigh that has been with me the past week. Luckily, not so much when I’m laying in my bed.

You can click on the photo to read about places on my upper body that are my new “signs of cancer.” War wounds and battle grounds. Each surgery, shaving, tattoo and simple cosmetic change has come to represent my struggle.

I normally don’t like showing off my scraggly, hairy chest. Heck, I don’t even like swimming in public with a shirt off. But I thought some of you might find the body mapping of my cancer to be an interesting thing, as I’ve come to think of it.

It’s possible that one of the tumors along my spinal cord is exerting enough pressure on my nerves to be doing serious damage to my legs and causing the pain to really step up. Dr. Bibb mentioned the next step may actually be surgery. We won’t know for sure until a thorough review of the MRI scan by several doctors (oncologist, surgeon, etc), and so a lot has been hinging on this.

Last night, after dinner and visitors, they came to collect me for the MRI. Kasha walked down with me to the basement room where it would be conducted. The technician who would be performing the scan didn’t have much to say, once she learned I had done this before. I was set in the machine, my headphones blasting classic rock, and the rumble-whirl of the machine and its magnetic resonance began.

…and didn’t stop. Well, the sounds changed and the table position shifted, but everything just went on and on with no feedback from the technician. I had no idea how long this was supposed to take and here began the dreadful pain, spreading down my thigh and now under my knee. Throb and clench. The pain was picking up steam and I could no longer keep my mind off it.

The next time the machine stopped whirring I yelled out, “The pain is getting bad!”

No response. My headphones kept playing Rolling Stones, and a washcloth over my eyes as I lay in the bowels of the machine had me totally cut off.

Another 5 or 8 minutes passed while the machine kept scanning. Then another stop.

“Help!” I yelled. “The pain is bad. I need morphine!”

Again, no response. Again, the machine whirred back into action.

I don’t know how much longer before the machine finally spit me out and the technician removed the washcloth from my eyes. I repeated that I needed morphine and was told my nurse was being called from upstairs. In the meantime I could lay there on the narrow tongue of the machine, in the prone position that was causing my pain to build. The scan was halfway done.

The technician left the room and I waited for my nurse. The pain changed and I moaned and shifted accordingly. Deep breaths. Curses. Pain explosions and acid burning. I curse LOUDER.
Finally:

“GET ME OUT OF HERE!”

I could wait no longer. The technician reappeared and said my nurse was still on her way. I told her I didn’t care, that I wanted her to get me out of there NOW.

It took some time for me to be able to move. It was as though my hips were flayed and stapled to the table. Finally, after some minutes, I was able to roll back onto the gurney. I was wheeled out of the MRI room and into the basement corridor toward the elevator. My night nurse, Trif, met me in route.

I have your morphine, she told me. My eyes were clenched shut and I was totally focused on getting the hell out of there.

“We need to get you back in there so you can finish the scan,” she told me. “Out of 1-10, what is your pain level?”

“10,” I hissed. Trif injected 10 mg of morphine into my IV. Within a minute I was calmer and the pain receded a little more to the background. I explained that I could not go back there tonight. The MRI was officially over. I wanted to go back to my room. Any hope I had of getting it done went out the window after the 3rd impotent yell.

And so, that’s what kept me from getting my MRI done earlier, and set me up for a miserable night on the floor, with doses of morphine and oxycodone delivered around the clock.

This morning, at 7am, Trif was back in my room with a 10mg syringe of morphine. She told me they were getting me into MRI first thing this morning and the pre-dose should help. I was glad to hear it. Even though the morphine failed to dope me I was glad for the extra girding.

The male technician who performed the MRI was communicative and I got through it. Granted, I had finished the longest stretch of the scan last night, but there were still a few times I wasn’t sure the pain in my thigh would win over. Funny, but I consider the fact I made it through this whole traumatic experience without aborting to be one of my best accomplishments this year.

Life goes by a whole new standard of measurements now.

I had a lot of visitors today, which was great; mom in the morning, Dad & Carol, Lance, Melissa and Kasha. My Dad & Carol arrived just as I was finishing a 2nd lap around the 4th floor during physical therapy. A therapist ties a belt to my waist (like a leash) and holds my IV stand while I walk ahead of or beside her, passing by rooms of other cancer patients and also the nurse’s station. My right leg has become a little more weak than my left, so I’m working on correcting my stride to keep it moving right. I’ve been using a cane from the hospital and also had one ordered to take with me (it arrived later– black, aluminum, adjustable). I have to make the effort to get out of the house and into the heat this week to get some long walks in.

Dad & Carol drove down from their home in Pinetop last night to take care of some Phoenix biz today and see me. They told me about taking an alternate route along Route 191 to see the massive Morenci mine of eastern Arizona, then a drive up Mt. Graham near Safford where they saw a young black bear.

I had my recent diagram of spinal tumors from Dr. Shaw of the radiation therapy team, and I shared this with them. It represented the CT scan of my full back the week before that revealed several sizable tumors along the thoracic region of my spine, all cancerous and a few of them exerting pressure on my vertebrae. Basically, over a half dozen tumors run the length of my spine from neck to end of ribcage and could cause paralysis in my legs or even arms if they continue to grow and cause pressure. Doctors have told me to alert them to any new sensations in my extremities– numbness, pins & needles, shooting pain, etc.

All said, though, my spine is in pretty good shape I would think. It’s the soft tissue that’s all f*cked. I’ve been getting regular chiropractic adjustments since winter of 2003, and it’s a shame Dr. Dan’s fingers and measurement tools didn’t pick up on the tumors, but “escaping easy detection” is the understated phrase that has hidden my cancer for years.

My first round of chemotherapy was targeted to Ewing’s Sarcoma, which we now know is not my diagnosis. While the majority of the drug cocktail is still able to help me, this next cycle will substitute one different drug that is specific to my current diagnosis, Neuroblastoma. The radiation specialists have recommended that we hold off on radiating my spine tumors because this could keep the chemo from doing its job– shrinking tumors throughout my entire body, namely Buster.

The chemo is working. It’s important to me that all of you understand the extent of my cancer, though. It has metastasized (spread) throughout my body, including many of my large bones and bone marrow. The question some of you may be asking at this point is:

Is my case of cancer curable? Doctors say no.

Is it treatable? Yes, meaning that my surgeries, chemo and radiation treatments can allow me to have a decent quality of life in the months or years I have left.

And I feel as though I have some very important things to do in my time. I’ll be telling you all more about this soon. In the meantime, I wait to babystep out the hospital doors tomorrow.

Kasha called me with an update.  His white blood cell count is up to 4.something.  That’s a jump from 1.7 yesterday.  He ate well all day.  No pain. Showered. He had visitors today and held conversations which does us all good.  Ruth (Kasha’s Mom), Kasha (after work), and Michael (our big brother) all visited and didn’t have to wear masks today.

There were rumblings of radiation today.  The radiologist stopped by to visit with Morgan once, then made his way in again when he learned Kasha was there.  Brownie points for Dr. S (radiologist).  He said that they were going to wait on radiation until after chemo.  He said that chemo works well on this stuff and that they would wait until after 10 chemo treatments or so.  He even mentioned the word REMISSION, which has not been said before.    Oh, music to our ears.

I am doing a happy dance… anyone wanna join me?  : )

Welcome Home Morgan!

Mom slept at the hospital last-night.  She said he was up about midnight with a big mess in the bed, she was able to help him.  At two he received his last dose of chemo for this round.  She requested oxygen for him, we had read that oxygen helps kill cancer,  and it seemed to help with his breathing and sleeping.

The kidney specialist was in this morning to report his creatinine went down again to 1.4 (1.0- 1.2 is normal).   This is great news!!   Morgan was able to eat oatmeal and a banana for breakfast.  He wants to fight this cancer on all levels.  Chemo, nutrition, supplements, holistic, counseling…  so we are  doing research to help make it happen.  He has an appointment with a nutritionist next week, until then he has changed his diet to exclude all caffeine, red meat, sugar (these are all said to feed cancer cells) and is trying to take in wise calories and nutrient rich foods.

Dr. L was in this evening, he is the next Dr. on rotation from Dr. I’s office.  He is pleased with how Morgan is doing, we can’t wait to hear more detailed test results.    We are learning more about Dr. I and his associates, lots of great things come out of that practice.  It turns out Dr. I was a huge part of getting City of Hope doctors here to Arizona.  He and his staff are all highly regarded at the hospital and several of the nurses have said they have treated their own family members.  All of this news is comforting to Kasha and the rest of us.    The nurses have been unbelievable.  We get a lot of smiles from the nurse staff.  I think Morgan is one of the only patients this week to have a constant flow of visitors.  We have hung posters, pictures and decorated with balloons and flowers.  It’s cheery in his room and we love to interact with the staff.  It’s just good to remind them he is cherished family.  Morgan is just such a lovable guy anyway.

Tonight the girls and I went to see Uncle Morgan and Auntie Kasha.  I was hoping to be able to visit with him some.  He was awake for most of the short visit and in good spirits.   We got to meet Dr. L briefly and heard that he is done with this round of chemo and will get a booster shot (white blood cells).  I am not sure as to what is after that, maybe monitoring and a plan to send home…. ?

I am ready to help him start making some plans to look forward to, after all, he and Kasha  haven’t honeymooned yet.      We are all committed to helping him on this journey, and I don’t think it’s just me that looks at LIFE and this world differently after the last couple weeks.  I think we have all had some realizations and are ready to get to LIVING healthier lives, which of course means something different to each of us.

Until tomorrow…    : )

His creatinine count went from 2.9 to 1.7 overnight which is fantastic news.  He is officially unclogged (unfortunately, to the other extreme)!  He had an x-ray this morning to check bowels and they didn’t express any concerns.

He has slept most of the day, but I wonder if he is really resting?   He wakes up often, jerks in his sleep and just doesn’t seem to be able to get comfortable.    He looks weak, worn, sick and tired of it all.  He doesn’t really have an appetite and has been nicely nudged to take in calories more often than he’d like.

Kasha has been so sweet with him today.  She gave him a shower, cleaned up some bed messes and fed him what he would take.  Mom has spent extra time at his bedside in the mornings and mentioned she may stay over tonight.

I miss visiting with him, it’s hard to be there without the interaction.  I’ve used the time to pray, meditate on scriptures and reflect on sweet memories.

I am hopeful tomorrow brings more good news…

Morgan has been receiving excellent treatment from Dr. K, of Dr. I’s office.  He is thorough and clear in his communication and has a great bedside manner, which is important to all of us.  He makes his rounds in the early morning and my mom, (Marsha) the early riser, has been able to get to the hospital to capture notes and ask our questions accumulated on the pad we pass around.

Morgan’s kidney function has been a concern and the cause for delay in Chemo.  Buster has really moved his insides around and he has had difficulties with #1 and #2 for some time now.

Here are the treatments Morgan has undergone this week:

• IV
• PICC line
• Kidney stent on each side
• CAT Scan
• EKG
• Catheter
• Enema
• ½ jug of GoLytely
• Cat Scan
• MRI
• And a lot of blood work

Through the CAT Scan and MRI they found that Buster had grown from 18.5 cm to 20 cm.  They ran the blood work again and the creatinine levels had gone down as they hoped so Dr. K gave the orders to start chemotherapy today.  That was an all day event.  The chemo nurse K kept us informed and was kind to spend extra time with us to make sure we understood everything taking place.

Morgan was quiet and weary today, he didn’t look well and wasn’t himself.  He hasn’t been sleeping well, he’s been clogged (#2) for over a week, and today was tough to witness.  My heart goes out to him and praying is the only thing that brings me comfort.

The Chemo cocktail was finally started about 5:00 p.m. today.  I had to leave, but Mom & Kasha said Morgan slept through most of it.    We are hopeful and praying this first round of chemo will give Buster and all his friends a real knock down!  Dr. K said they expect a good response with this first dose.  We will keep you posted.

Make sure you check out Morgan’s about page.  If you don’t know him personally, you’ll be able to read more about him and see what he looks like.   I’ve always called him my big, little brother…he’s a gentle giant.