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.

It’s amazing how I can go from 3 weeks of rosy health to a day of frightful pain. Will it continue? Get worse? Can doctors find a way to make it go away or will I have to live with it?

I took my strongest drug, Dilaudid, to no effect. It’s supposed to be 10 times more powerful than morphine but, as far as my thigh is concerned, it’s a worthless placebo. Kasha gave me another dose of Lyrica this afternoon. It’s supposed to help with nerve pain, and it’s possible that’s what this is. The pain feels like it’s in muscle or nerve, not bone. I’ve been told I have cancer within my thigh bones (as well as many other bones), which is why I sometimes worry about the pain breaking through.

Tomorrow I go to see my oncologist (cancer doctor) and will hopefully get more answers. Also, I’ve been having extreme pain near the power port in my chest, the one used as an IV. It began happening when my antibiotic was being pushed in last week. The nurse who’s been overseeing my port use says it may be the result of a hole in the catheter portion. If that’s true I’ll have to have surgery again to replace it. Man, I’m so sick of surgery. Anyway, they’ll test my port soon with dye, to see if a hole is visible.

It’s been a while since I wrote and all I have to share is bad news. Sorry about that. I should have been sharing all the wonderful days I’ve had until now; the feeling of strength and confidence. Life’s been great, and I need to remember to carry that feeling forward even when the pain comes. I too often let a health problem turn my world upside down.

I’ll make it through this, though, just as I always do. I just had to moan for a bit.

Other than that, I’ve been taking walks down the halls each day to strengthen my legs and make sure my foot holds. I’m supposed to have a brace for my right foot today, since I have what they’re calling a “drop foot.” I don’t have full control over it and the foot just drops to a 30 degree angle instead of 90 degree. It makes it difficult to walk, and my physical therapist has been tying it up to help for now.

I’ll be continuing IV use from home. I haven’t tried that yet, but there’s a company that will come into my home to help with infusions of antibiotics. They are necessary to take for at least another week, for my urinary tract infection. I’m not totally sure, but I think my blood infection is cleared up. It was a serious issue for a while, but they pumped me full of so many antibiotics I don’t see how anything could have survived!

It will be good to be home. First, I’ll just enjoy being closer to Kasha. She won’t have to spend so much time going back and forth to the hospital. Second, my home just feels better, and I have access to my big TV, Wii games and DVD player.

I need to get to writing again. Or at least some research. I’ll be going through a lot of papers these next few weeks, trying to organize, and that should help me find a lot of the papers I’ve written in the past in support of my book, American Wayside.

I’ll let you all know how things are going at home in the next few days. Thanks for your continued thoughts and prayers. I do appreciate it!

Kasha left the hospital around 9:15pm. (She had been with me since about 5pm this evening, after work.) My mom, Marsha, was here to “fill her shift” through the night. I had my “briefs” changed, positioned myself on my side, and drifted off to sleep.

Throughout the night I sometimes wake myself up with violent body jerks or loud snorts and snores. I’m not sure if it’s the drugs that lead to all this. I was always a quiet, steady sleeper before. Anyway, I managed to stay prone until about 3am when I was tempted to get up and geek on the computer. I resisted and slept even more.

At 5:30am I was finally up for good. My nurse was in to provide drugs and draw blood (that’s Cornell from Romania- one of my favorites here). My PCT (Patient Care Technician) cleaned me up and now here I am, ready for the day. About 8 hours of sleep. What used to be a standard for me is now hard to catch all at once, and I’m sure the extra winks will help. Maybe I won’t feel so drowsy this afternoon as a result.

Never underestimate the need for sleep. That’s what I’ve learned. When tempted to watch another hour of TV or stay glued to the computer, give it up and get to bed!

Last week was a really rough one and in all truth I was scared. I had never felt so weak, and I believed I would get no better from that point on. But new days, hydration and pills (not to mention a renewed optimism) brought me back around. Kasha and my mom have been overlapping schedules to be with me almost around the clock. It’s been so great for me, to have that support. It re-energizes me. Right now Ruth, my mother-in-law, is here at the hospital. I appreciate her companionship, and she’s able to help me with little things throughout the day so I don’t have to wait on the nurses.

I haven’t been having any noticeable side effects from the chemotherapy so far, just like last time around in September. Usually my levels all drop around the beginning of the 2nd week. We’ll see what happens. It shouldn’t be too bad.

My amazing friends, Ben and Dan, will be coming in this weekend to visit me. It’s a shame I won’t be able to leave the hospital while they’re here, but I hope they will take my family up on some hospitality to see the city a bit– go out to dinner and see a little of what Phoenix is about. I haven’t seen Ben, from outside Portland, Oregon, in over 5 years. Unbelievable. He’s been such a vital friend over the years. Dan I was able to catch in California back in August, but the visit was brief. Glad he and Ben were both able to sacrifice family time to spend it with me all weekend.

I was originally supposed to go to the U2 360 concert next week, but I now know my chemo schedule won’t allow it. I’ve told Kasha I still want her to go, since Melissa and Nick will be there, and possibly some other family members. It’s silly for her to forgo the concert just because I can’t be there. I want to hear all about it! Plus, no reason for my family to sacrifice everything on my account. I did get to see the U2 360 movie, which was amazing, so I know the concert will be incredible.

It has been a long time since I’ve personally checked in with you all on the blog. Thanks to all of you for your patience. I’ve got some work to catch up on this week from the hospital bed and also hope to write some emails and letters. We’ll see how far I can get. One thing’s for sure, my spirits are higher than they’ve been in a long time and I’m motivated by it!

Friday afternoon, the party was switched to my place. The reason– I wasn’t sure I’d have the energy to make it to Melissa’s house. There was a chance at one point that the party would be cancelled. My doctor’s office had called and recommended I immediately admit myself to the ER at John C. Lincoln Hospital because I had been having fevers each night and a lot of pain in my right foot. I was able to call back Dr. Lo (my oncologist who had left the ER message) and explain that I was having a party. He said it would be OK to wait for the morning to go to the hospital.

And so the party went on. My living room was transformed from a semi-hospital room to a wide open entertaining area. The hospital bed was wheeled to the back of the room and a half dozen chairs  were set out. The couch looked inviting in front of the sliding glass door, and my old office- with doors opening into the living room- was clean enough to operate as a second entertaining room.

Spinato’s was delivered, my absolute favorite pizza. By 8 o’clock everyone who was coming was there. My brother, Mark, had flown out from Austin to be there. Considering the expense of such a trip I was really touched. He had just been out here a few weeks before for my mother’s notable birthday. I was also excited to talk with an old friend- Michelle- who I hadn’t seen in about 9 years. Coffee, espresso, cheesecake, fruit and shortcake were served. I had suggested chocolate cheesecake as birthday cake and it was perfect.

By 9:30pm only family remained. We took some photos and then someone recommended the party break up so I could get some rest. I had begun to feel a little more weak, so I had no complaints about ending the party. Everyone quickly cleaned up the house and then trickled out the door. The party was over, and I was grateful for all the work put into it. (Thank you Melissa and Mom!)

This morning I’ll be admitting myself into the hospital. In the next hour, in fact. I’m not sure what the ultimate result will be, but I’m hoping to get my pain pump adjusted so my right food doesn’t throb with pain so much, and figure out if I have an infection that’s causing my nightly fevers. Maybe they’ll start me on another round of chemotherapy Monday. We’ll see.

In the meantime, thanks to all of you who came to my birthday party, sent a card, or offered well wishes. It all means a lot to me!

The office of specialists who put in my pain pump goes by the name The Center for Pain and Supportive Care. Dr. Lisa Jo Stearns is the founder, and the one who performed my operation. This morning it was Jennifer Kiser from the team who stopped in to check on me. I told her my leg felt fine and I was feeling coherent. (Yesterday I could barely form sentences in the afternoon, I was so drugged). She left without changing my settings, wishing me luck.

Joanne was in later in the morning, an assistant from my oncology office. She says chemotherapy may begin tomorrow. It will depend on whether or not my infection stays reduced and my fever doesn’t come back.

Time is going by incredibly slow today and I’ve been dozing on and off. I expect to just kick back in front of the television (or laptop movies) for the rest of the day, then get updates for tomorrow’s therapy.

From Morgan’s Facebook album, “On the Road w/the Salman”

I’ve been using Facebook quite a bit lately to keep in touch with friends and share more about myself. There you can find tons of info about me, including photos, hobbies, personality quirks, travel notes, etc. I’ve added my reading list, music recommendations and lists of the places I’ve traveled. Check it out. Go to:

www.facebook.com/morgan.strub

(If you don’t yet have a Facebook profile you’ll need to first create one and then add me as a friend in order to see most of my info.)

There’s a chance that I won’t be feeling as well next weekend as I do now, due to chemotherapy starting up again, so I want to maximize the time I have and enjoy all I can. It’s been a rough couple of weeks for me- due to steroids, new pain and numbness, emotional weardown, etc. I’ve also been letting myself worry about next week, even though there’s nothing I can do about it. For all I know, everything will be smooth and fine– the hospital stay, ureter stent replacement (kidneys), and chemotherapy. No need to jump ahead in my mind or expect the worse.

For now, I just have to live in the moment. I got extra sleep last night so that I could reset myself and be ready for everything.

I have been bad about following through with communication lately. I apologize to those of you who have reached out to me lately and received no response. I am thinking about you! Please be patient with me, I’m sending word soon.

Hope to have some photos up here on the blog this weekend… and some guest bloggers among family members.

I’m still not used to the effects of the steroid I’m taking, Dexamethasone. In fact, I had no idea what I was getting into when it was first prescribed to me last month. No one explained its side effects, and I didn’t think to ask. Up to this point I’ve just been letting whatever drug details get through that seemed relevant and leaving it at that. (“You’re giving me OxyContin for pain? I could have severe constipation? Ok…. Lopressor to keep my blood pressure down? I might get tired and dizzy? Whatever…”)

The drug’s potency is about 20-30 times that of hydrocortisone and 4-5 times of prednisone. I take a 4 mg tablet, four times daily. As one of my radiation doctors described it this last week when I began complaining of symptoms, the shock to my system is like drinking 50 cups of coffee.

It was returning from my LA trip last week, when my doctor upped my dosage back to 4x daily, that I really began to notice extreme changes that were very UNme. Most symptoms I had been experiencing since the start of my prescription a month ago, but it’s the emotional/mental effects that have been hitting me hardest lately. Now, I wish a doctor or nurse had warned me about this scenario of side effects:

You’re going to become something of an assh*le. Your wife is going to get the brunt of this as you become more and more critical, mean-spirited. You’ll make her cry, and you won’t be able to see how your dark mood is muddling everything up.
Sleep? Forget about it. Not only will you lose it at night, you’ll convince yourself you never needed it, all the while dozing throughout the day in a mostly unfulfilling way. Any productivity gained by having all those extra hours is lost in a low-grade drug haze.
You just can’t get enough to eat. Every meal is an overkill of double portions, and snacking takes on a whole new meaning. Your face puffs up and your gut juts out.
You’ll have a general feeling of discomfort and upset. From stomach and throat irritation to cracking, unhealing wounds to annoying periods of increased sweating.

So, with all this trouble the drug is causing me, why on earth am I taking it? According to Wikipedia’s Dexamethsone page:

“In oncology, it is given to cancer patients undergoing chemotherapy, to counteract certain side-effects of their antitumor treatment… Dexamethasone is also given in cord compression where a tumor is compressing the spinal cord.”

In my case, it’s mostly for spinal cord compression. I spoke with Dr. Kukunoor on the phone today and he told me I can again cut back to 3x daily, and that next week- after I start back on chemotherapy again- I may be able to decrease to just 2x daily. I can’t tell you how relieved I’ll be- body and mind. Let’s hope the radiation is doing all it can to shrink the tumor that’s making this necessary in the first place- the one between my shoulder blades.

My last radiation treatment will be Friday. Then, back to the hospital on Monday for both chemotherapy and kidney surgery. My brother and his son will be in town beginning Thursday. I’m excited to be able to see them both, Mark and Jack. I can’t tell you enough how much my family’s support and presence has meant to me; my wife, parents, siblings, aunts and cousins. I’ve always known how important they are to me. I guess I never really knew, until now, how powerful their influence is- to facilitate healing and catharsis.

My friends have also been essential to me, of course. They inspire me, provide emotional support, and motivate me for what lies ahead. I’ve been amazed at their level of devotion, and it makes me want to give all I can in return; to show their belief in me is not wasted.

So, what gets me through these rough times– when the drugs play tricks with my mind and the myriad physical symptoms keep wearing me down? My family and friends, of course. My commitment to them, and- as a result- my commitment to heal and choose to live as best I can.

And I’m so grateful for Kasha. I can’t imagine making it through without her. We chose each other, for better or worse, and we’re able to love each other through whichever comes our way. Let that realization shine through each time Buster or any steroid tries to bite us in the ass.