The Scott Times

For 22 years, I’ve written a newsletter to family and friends asking for a donation for the National MS Society prior to the annual bike ride fund raiser.  I rode my bicycle in the 150 mile event for several years — many with canes or crutches hanging on the front of my bike.  When I could no longer pedal, I became an Amateur Radio Operator just so I could still be involved in the bike ride.  I have continued to ask family and friends to support my “virtual” bike ride.  Here’s this year’s newsletter:

Dear Family and Friends,

If you’ve been following our story over the last year in our blog at http://RideMaps.com/myblog, then you already know what’s been going on with us. This is a highly condensed summer rerun along with a return envelope for you to make a donation to the National MS Society.

If you haven’t been following the action . . .

When we last left off in the continuing saga, Lew had just been diagnosed with colon cancer and all kinds of tests were scheduled.

The tumor had been there long enough that it had grown completely around the inside of his colon. The remaining opening was too small for a child’s size endoscope to fit through – the colonoscopy couldn’t be completed. So, a CT scan and a PET scan were scheduled to see what they could see.

Nope, they couldn’t see any more colon cancer. (Yay!) But . . . there was a shadow on Lew’s right kidney. Dr. Colon Surgeon called in Dr. Kidney Surgeon.

The mass was all the way inside of Lew’s kidney. It couldn’t be biopsied without increasing the odds of spreading the cancer (if it was cancer). No, it couldn’t be removed by itself – the entire kidney had to be removed. If a growth is small and on the outside of a kidney, they can shave it off. But inside a kidney, there would be no way that they could stop all the bleeding. Lew’s right kidney had to come out too.

The doctors didn’t think that the mass in Lew’s kidney was colon cancer. It would be a blessing if Lew had colon cancer and kidney cancer at the same time. If the mass turned out to be colon cancer, it would mean that the colon cancer had spread outside Lew’s colon – not a good thing.

If the colon cancer had spread, it would more likely show up in Lew’s liver first. The scans also showed what looked like cysts on Lew’s liver. (Fingers crossed!)

Lew was opened sternum to pubis. He was closed with thirty-five staples. His right kidney was removed intact along with surrounding fatty tissue. Dr. Kidney Surgeon didn’t try to get a look – he left everything together for the pathologist. He did give Lew’s liver a going over and found nothing that didn’t look like cysts. (Yay!)

Dr. Colon Surgeon wasn’t as encouraging. He could easily see that the colon cancer had grown around the outside of Lew’s colon and spread to the nearby lymph nodes.

A few days later, the pathology reports were done. It was kidney cancer – the size of a golf ball. It appeared to be fully contained within the kidney. There were no cancer cells found in the arteries going in or out of his kidney – they had gotten all of it. Lew was now considered to be kidney cancer free.

Thirty-nine lymph nodes were removed along with part of Lew’s colon. Twenty-six were biopsied – thirteen contained colon cancer.

Healing took a while. The incision had to be opened twice because of infection. I learned to pack a wound without tossing my cookies. I also learned how to help Lew empty his bladder until it got to working again. (The things we learn to do when we have to!)

Thankfully, Lew doesn’t remember a lot of what happened. And I enjoyed watching him react to his awake dreams. He kept telling me about watching TV in the bedroom (nope). Finally, he gave me a hint. It was one of Dad’s paintings that was in his direct line of sight while lying down. He thought the people in it were moving around, doing all kinds of interesting things. I never did figure out what he was doing (his hands moved almost constantly in very purposeful motion).

In January, we met Dr. Chemo. The first thing he did was order an immediate CT scan of Lew’s neck. Blood Clots! Thank you Dr. Chemo!

Because of the blood clots in Lew’s neck, Dr. Chemo thought it would be dangerous for Lew to have the standard form of colon cancer chemotherapy – it required a tube for the chemicals in the upper chest. Instead, Lew would get an infusion every three weeks along with two weeks of pills.

But before starting chemo, Lew’s blood work showed a problem – Lew’s left kidney wasn’t functioning as was expected. Normally, when a kidney is removed, the remaining kidney ramps up production and takes over for the missing kidney. Lew’s remaining kidney decided that since everything had been just fine for the past seventy-one years, it didn’t need to make any changes.

With only fifty percent kidney function, Lew’s chemo was cut in half. The first round went well. One week into the second round, Lew was rushed into the infusion room to get steroids pumped into him while the lab was rushing to see if he needed dialysis. He was okay, but had to stop chemo after only eight days instead of fourteen.

Dr. Chemo called a halt to chemo after the third round. Lew’s blood work should have shown a marked drop in his cancer antibodies after the second round of chemo. Instead, it had doubled. It continued to rise after the third round. He was getting worse instead of better.

He ordered another CT scan to look for more colon cancer and an ultrasound to check Lew’s kidney. Everything looked “normal.”

At a loss for what was going wrong, Lew was sent to a surgeon to have a grain of sand in his neck biopsied. Lew and I were hoping it was kidney cancer – we were only treating colon cancer, not kidney cancer. We didn’t want the colon cancer so out of control that it couldn’t be bullied by the chemo.

It wasn’t colon cancer. It wasn’t kidney cancer. It was prostate cancer. We were floored. Lew had stage four prostate cancer! Lew had seen two urologists (including Dr. Kidney Surgeon) and neither of them thought a biopsy was urgent. His PSA was 19 in October. All the CT and PET scans showed nothing. Now, he had prostate cancer in his lymph nodes.

Just days after it was announced on TV that Elizabeth Edwards’ breast cancer had spread to her bones – I remembered that I had forgotten . . . during Lew’s pre-surgery exam, the x-rays showed that Lew had a broken rib. With colon cancer and kidney cancer surgery just days away, I didn’t think a broken rib as something to think about.

Lew’s bone scan was a surprise. The pathology report was only three sentences long. Lew had cancer in his skull, jaw, neck, spine, shoulders, and hips.

It started to make sense – The increasing nerve pain and clumsiness in his legs were from a tumor pressing on his spinal cord.

And then I remembered the PET scan done pre-surgery. There was cancer in one of his lungs. It was too small to worry about at the time. We decided that three cancers were enough to worry about and didn’t pursue it any further.

So, Lew began hormone therapy for prostate cancer and began an infusion to strengthen his bones. And did round four of colon chemo.

Lew got too sick to continue colon chemo. I was thrilled that it was stopped. I didn’t believe he’d survive another round or two.

He’s done very well with hormone therapy. His PSA has dropped from a high of 25 to 1.06 (its never been so low). And, not having any testosterone in his body has made him much easier to live with (”Hormone therapy” is the polite way of saying “chemical castration.”)

That almost brings us up to date. Right now, we’re on hold. Lew has developed strictures that are pulling his colon closed where it was resected. He’s been having it stretched open every four to six weeks. Dr. Colonoscopy and Dr. Colon Surgeon are arguing about how to deal with it. Dr. Colonoscopy thinks it cruel to make Lew go through the stretching every month for the rest of his life. Dr. Colon Surgeon says the only other option is to resect Lew’s bowel again – taking out the parts that are forming scar tissue (and there’s no guarantee that he won’t still have the problem). So, we’re in close-our-eyes-and-hope-the-problem-goes-away-on-its-own mode. (I’m glad. I needed the time off!) When the scar tissue gives him a problem, he’ll get stretched again and then decide which way he wants to go.

And . . . he’s also debating on what to do about the bone strengthener. Its definitely made a difference. He had pretty much forgotten about the pain and clumsiness in his legs. But, we think it has a terrible side effect – its affecting Lew’s vision. He’s had it twice now and each time he’s lost his ability to read for at least a week afterward. He has to struggle not to rub them because they are irritated for weeks. His right eye hasn’t recovered from the infusion three weeks ago (Dr. Eye and Dr. Eye Surgeon can’t find anything to explain it.). Lew’s good eye is doing kinda, sorta, okay. Its fine in the morning, but as the day progresses . . . So, Lew has to decide if he wants to continue with the bone strengthener.

Oh! I almost forgot to tell you . . . the infection Lew had from the surgery . . . it weakened his fascia. He’s got a humongous hernia. He has to wear an abdominal brace to hold his insides in. He’d like to have it fixed, but he has to decide about getting his bowel resected first.

And, that’s almost it. All things considered – he’s doing extremely well. We are both enjoying this quiet time away from doctors. Lew’s being a home handyman with his first, for real, job jar. We’ve got a 16 year-old weightlifting neighbor who is washing our cars and hauling the ladder around for Lew (he’s addicted to eBay and will do anything for a few bucks). Anybody want a squirrel feeder? Lew’s built six of them, so far.

Marley’s been an absolute angel with all the hospital and doctor visits. Though, she’s pretty bored with all the hurry up and wait. She’d rather go shopping. But she came in real handy with Lew’s recuperation – she’s been dragging him a couple of miles around the park most mornings.

Sometimes, she scares the daylights out of me – when she sits and stares at Lew while he’s sleeping. I sit and go, “Snore! Snore! Come on, snore!” So far, he’s accommodated me.

But, she’s twelve now. And she’s starting to show her age. Lew made steps for her to get into his car. I’m thinking of how to add another step in my van. There have been times this past week that we’ve watched to see if she’s still breathing. But then, when there’s food around . . .

Me? I’m doing okay. You know me – I thrive on crisis. Okay, that’s not true, I admit it. There have been times I’ve fallen apart. But mostly I’m okay as long as I have something tangible to take care of (ie: packing Lew’s incision, driving him to doctors, counting out pills, etc.).

I’ve also gone through some bad times because I’ve made some bad choices. I finally learned just a few days ago that I need to be much more choosy about who I listen to. I almost feel sorry for the next person who tells me that a disabled person can’t be a caregiver. I have no pity in my heart for the next person who starts talking “extended care facility” for me after Lew dies.

But mostly, I’m okay. Having a conversation with me right now might seem a little strange to some of you. I easily talk about making funeral plans and how outrageously priced everything is. And I’m not sure about how I come across when I mention that I’d rather put Lew in the recycle bin out at the curb on Wednesday morning.

If Lew should die under questionable circumstances, I’m going to be in big trouble. I’ve been making light of our situation when people ask about Lew’s prognosis. Usually, I answer with, “Dr. Roto-Rooter acts like Lew is going to die tomorrow. Dr. Kidney-Prostate thinks Lew has five or six years. Dr. Chemo talks in months. I think that’s overly optimistic. There are times that I’m not sure I’m going to let him live that long.”

So, other than having an incredibly stressful year, we’re doing okay. I’m looking forward to the bike ride in September and going to the beach for a few days. I’ve reserved a “King Suite with a Murphy bed” at the hotel in case we need someone to stay with Lew while Marley and I chase bicycles. And, yes, I’m evil enough – I’ve given Lew a deadline – if he’s going to get sick and ruin my vacation, he had better do it before August 29^th so I can get the deposit back!

Yes, even though I’m not at all involved with the planning of this year’s bike tour, I’m hoping to be there. Its an all new route that will be entirely within Horry County, SC. That’s a really good thing. I understand that the sheriff’s department is totally behind the event and helped plan the route. So, I’m really looking forward to it.

I hope you will help sponsor my “virtual” bike ride again this year. Please make your check payable to the National MS Society and drop it in the enclosed envelope. Or, if you’d like to save postage, my (barely personalized) web page is at http://www.nationalmssociety.org/goto/elena.

Oh! And if I may, I’d like to get on my soapbox for just a moment – since there is an election year ahead. My health insurance (just mine) now costs over $1,800 a month – $22,000 a year. Please make sure your candidate knows that a tax credit for medical expenses doesn’t mean a thing when your deductions wipe out your tax bill. Thanks.

With love,

Elena

If you’d like to follow the ongoing Scott saga – http://RideMaps.com/myblog – a plain text email version is available. If you’d like to read this saga from the beginning, it began on page 5 – http://ridemaps.com/myblog/?p=5.

Dear Family and Friends,

The following is from my online journal. I doubt I’ll be sending out another newsletter for a while. So, if you’d like to check up on us . . . http://www.ridemaps.com/myblog

From October 4:

The day after the bike ride, Lew saw a gastroenterologist in the morning and a urologist in the afternoon. He was scheduled for an upper endoscopy and a colonoscopy on October 5. The prostate biopsy would have to wait at least ten days after that.

Tomorrow, Lew will be having the upper endoscopy and the colonoscopy. The purpose is to look for the cause of his anemia.

From October 5:

The Test Results

Have I ever told you that Marley hates waiting rooms? She’s sitting between us. She looks at me, generates a mind meld, and says, “Let’s do something else.”

I replied out loud, shaking my head, “Its only going to get worse.”

She turned and looked at Lew. He said, “Don’t look at me, I can’t help you.” She huffed loudly and laid down with a big sigh — all to the amusement of everyone in the waiting room.

Seems that it was forever sitting there, waiting for Lew’s news. Watching doctors and nurses call for family members, it didn’t take long to figure out the routine. Heaven forbid they should say, “Let’s go in the conference room right over here.” I wanted to be told Lew’s status, quickly, out in the hallway.

When it was finally our turn, I was so relieved — we were in the hallway! But . . . sometimes the conference room is already taken.

You know life is about to turn really crappy when your husband’s doctor offers to summon the hospital chaplain. And then he said, “I’m sorry. Its bad.” When I asked how bad, his reply, “Bad.” He showed me the pictures and explained that he couldn’t finish the exam — he couldn’t squeeze the scope past the tumor. He’d put a rush on the biopsy. We both were to come into the office on Tuesday for the results.

Poor Marley. Even the nurses commented that she was shaking. I just wish there was a way I could turn off her emotion sensors (No, leaving her home alone would be much harder for her.). When Lew finally came out of recovery, she did a hop-skip along beside him, she was so thrilled to see him again.

The doc had already told Lew what he had found, but Lew wouldn’t remember. “Milk of Amnesia” is what the anesthesia is called. Lew has always had problems with anesthesia. He never has seemed to grasp how bad he gets. But this time, it seemed worse. Lew’s “amnesia” wasn’t worse. It was having to deal with it that was horrible.

“Did you see the doctor?” he asked as soon as we got in the van. He didn’t remember the doctor explaining what he had found. We sat in the parking lot for several minutes while I explained that he had a large mass that looked like colon cancer. Lew sat very quietly as we headed home.

Not three blocks from the hospital, Lew asked, “Did you see the doctor?” (Aw, geez, I gotta tell him that he has colon cancer again!) It wasn’t until the third time that he asked that I finally figured out the right answer.

“Yes, dear. I did.” I said, without repeating everything I had said twice before.

“Isn’t he nice?” Lew asked, without asking more. (Major sigh of relief from me.)

Finally at home and eating lunch, Lew exclaims, “My teeth! I don’t have my teeth! They put my teeth in a cup and didn’t give them back to me! I don’t have my teeth!” (He lost his two front teeth back when he was a young “man” in the Navy and made a remark in a bar about the girly-men Marines that were twice his size.) I tried to stay calm and reassure him that I would go back after his teeth later in the afternoon. And he began describing the cup his teeth were in. Then he started all over again. He was terribly upset. I thought it suspicious that there wasn’t a message on our answering machine that they had found Lew’s teeth just after we left the hospital.

A few minutes later, Lew looked over the edge of the mug I had just set in front of him. “My teeth! How did my teeth get there?!”

Me, “You took them out of your mouth as you came in the door and put them where you always put them.”

Lew was totally shocked. He had no memory of having his teeth. And he finally agreed that I hadn’t been exaggerating when I had told him that he had memory problems after medical procedures.

P.S. (Added six days later) Lew doesn’t remember eating lunch at home that day. The incident with his teeth, he hardly remembers.

Of course, the saga continues with visits to the surgeon, a CAT scan, prostate biopsy, etc. etc. New chapters added every few days as there is something to report. The Scott Times is at http://www.RideMaps.com/myblog/ The most recent chapters appear at the top of the page.