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.

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.

Saturday night was an adventure.  Morgan loves pizza and we decided to get the “kids” together and go out to a hot Phoenix destination: Pizzeria Bianco. The lines start forming at 4:00 for an opening time of 5:00.  Nick and Mark arrived at 4:15 and were the 60th in line.  The doors opened at 5:00 and, when they put their names in, where told we would eat between 7 and 7:30.   I arrived about 6 and Morgan and Kasha were there about 6:30.

We sat out on the patio to the next-door bar and took in the quaint neighborhood sights.  The old houses that line the street and the way it is blocked off- you naturally start to slow down and just absorb all that surrounds you.

We were seated at 7:00 and had one of each pizza- THE BEST PIZZA EVER!!!    We will definitely have to go again.   We were all in good spirits and didn’t want the night to end so we headed for the world’s best Gelato.  We were enjoying our time together and taking it all in as we knew the week ahead would be another hard week and we would look back at these times for encouragement.  (That’s what I do, anyway.)

Morgan mentioned he wasn’t looking forward to chemo, but he had some new pain and that he knew there were some things they would need to do and he may be in there for a while this time.  I was sad, it scares me… but I know that he is in good hands and we really are dealing with great Doctors and specialists.

We walked back to the car to end the night.  Morgan and Kasha went their way and we went home.  I was in bed by 11:00.  Morgan and Kasha had it different…

Morgan started a fever and his pain level was 13 (scale 1-10).  He was beside himself in agony and Kasha took him to emergency.  There are a lot of details between midnight and when I got a call at 6:00 a.m.  Kasha said Morgan had been admitted to ICU at midnight and was running a 103 temp.  They thought it was pneumonia and were trying to manage pain along with administering antibiotics.  It turns out it was a urinary tract infection…???  Hello, um that’s way different, miscommunication somewhere.    I am sure I don’t give the story justice, maybe Morgan will give more details later.

•••

Last night, Sunday, Aug 23,  Mom says worst night at hospital.  Morgan was beside himself in pain, screaming and just in agony… excruciating…. so hard to witness.  Little to no sleep for both of them.

Today, Monday, Aug 24.  They were able to double his dose of pain meds and administer it every two hours rather than four.  There was discussion of having a “pain pump” put in..  and maybe Chemo Wednesday. Tuesday he is scheduled to have his kidney stents replaced @5 pm.  YUCK.  First, they take the others out, then go in again with new.  Yikes!  If the OR is available they will put the pain pump in then.  I’ll have to get more details later on that.  I think if all goes well the 2nd round of chemo starts on Wednesday.

This is the latest- as I know it and for now…

Please pray for Morgan.

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.

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’ve been doing pretty good keeping myself calm, not jumping ahead to worry about side effects of the chemotherapy cycle over these next few days. Last time was rough, and I felt like hell for 72 hours straight. But maybe this time will be better. If not, well… by the time I begin freaking out it will already be half way over.

I’ve been having more trouble with my legs these last few days. Pain and numbness in my thighs and hips, plus almost constant numbness in my buttocks (a very strange feeling, one I’ve had in the past several months). Doctors said this could be a sign of spinal pressure caused by the tumors along my upper spine. For this reason I’ll be going downstairs for a new MRI scan sometime this evening. The pain’s been mostly on the right side of my body. Last night it got so bad I almost had to be admitted through emergency right then. But I convinced Kasha to let me ride it out as I snoozed on the couch in front of the TV throughout the night, being careful not to get stuck sleeping in a rut that would activate the acid burn nerve pain experience.

Melissa and the girls are on their way down here for a visit. I’m craving cookies, so she’s bringing some from Paradise Bakery, along with goodies for the nurses on the floor. Evan is my current attending nurse. She has been a wonderful advocate and seems to go above and beyond for me. My mom will also be here and  sleeping in the room with me tonight. She was a great help on my last chemo dose, so I’m grateful for this.

Oh, mom just arrived. More from me later!

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?  : )

He is scheduled for a PORT tomorrow morning and then prep for release begins.  The urologist said the catheter stays.  I also needed to let you know that another one of my posts was not entirely correct.  Morgan did inform me tonight that he has not given up red meat.   

You may hear from Morgan tomorrow, if not… I’ll be back.