clear cell kidney cancer

A cancer journey – the green folder

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Lots of wheelchairs to borrow
Next week is surgery week. Rick’s left kidney comes out on Tuesday! It all sounds a little too simple. Right?

We thought we had finished all our appointments during our pre-op day at MD Anderson. Now we could just coast on a lovely, poufy cloud until the big surgery … but wait! It seems in taking all that blood, possibly a gallon by now, someone had forgotten to “type” Rick’s blood. Really? Is that necessary? But Rick’s dog tags from his Air Force days clearly state the dude is an A+. It seems they don’t take anyone’s word on that. The place is careful … very careful … and I actually appreciated MDA for that. So we spent last Friday … the 13th … our anniversary … at MDA for two last appointments.

The first was the lab! Whenever we visit the MDA lab, I hang out in the waiting room. I figure Rick can perform that task himself as there are not going to be any notes I have to take. After about twenty minutes, my macho Rick walked toward me with the funniest grin on his face. The hot pink flexible tape around each arm where the techs took blood were obviously the culprit. I almost fell on the floor laughing. I took his picture with my phone and immediately sent it to our kids.

“Why did they take blood from both arms?” I asked, picking up everything I dropped on the floor.

Maybe I should have gone into the lab area with him!

“They had to take blood out of each arm, with two different technicians, and then they will compare the tests to make sure I match,” Rick explained.

“And so … did you request the hot pink?” I countered.

“I don’t know whose idea that was, but when the first lady was finished, the second one decided I should match. Only they ran out of hot pink and had to scrounge around to find some,” he grinned.

Our next appointment was with patient education in the Mays Building. That was when we were given the dreaded “green folder.” My eyes widened like bowling balls as the nice lady went over everything for about an hour and then put all the paperwork into the folder. Then she slid the green folder over to me. Basically, it was loaded with checklists, Rick’s preparation for surgery, phone numbers, maps and care plan. OK … this wasn’t going to be simple. But I think I already knew that.

First time in ages we finished at MD Anderson before lunch. Next we headed to mid-town for an awesome anniversary lunch at a place called Holley’s Seafood Restaurant and Oyster Bar on Louisiana. Our first time there. It was delicious! Highly recommend sharing the apple pie bread pudding for dessert!

Yesterday I checked MDA’s patient portal for test results. You get three guesses on what Rick’s blood type came out to be.

A cancer journey – waiting for surgery

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Lots of wheelchairs to borrow
Not too much to report on the “fighting cancer front” at our house over the past two weeks. Rick has lost his voice for the past 12 days … I mean it is no where to be found. Believe me … I have looked for it everywhere. That and sleep issues have been our main challenges.

It is why we paid a visit to MDA’s Supportive Care for some help. Rick has never taken a sleep medication so this was going to be uncharted territory for us. Getting up seven or eight times at night just isn’t good for anyone. The Supportive Care people have expertise with helping control the many cancer symptoms their patients experience. It took a couple of nights taking the prescription, but now Rick wakes up rested and experiences no fatigue during the day. Can I get an amen?

We also asked Supportive Care with help retrieving Rick’s voice. It is here we learned that MDA doesn’t help with illnesses not related to cancer. Good to know! A trip to our local Dr. Young’s office revealed an ear infection and swollen vocal cords. We left with a few medications. It has been just over a week on meds and not sure the voice is on the comeback trail. We just don’t want this to be an issue to not perform the surgery. That left kidney has got to go!

Yesterday, we survived five pre-op appointments at MDA. Every time I go to MDA, I learn new things. I learned it is a good idea to have a medical bracelet made that tells people he has one kidney and is on a clinical trial. What a great idea! I also learned if you go to your primary care physician with an ailment and are prescribed meds, be sure and let the MDA people know. If you are on a clinical trial, there are certain medications you can’t take! You don’t want to get kicked off the trial. I learned appointment times are kinda like suggestions. Basically, you have a slot! If you happen to be early for an appointment they just might take you. So getting on the road back home early could really happen.

A cancer journey – CT scan and infusion results

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Infusion drugs!
When last we hung out, Rick had just finished his third immunotherapy infusion. So for about two weeks the superman t-cells have been “cooking” on Rick’s insides. I can tell you we haven’t been twiddling all four of our thumbs this whole time. We ordered a car to be converted for transporting Mimi in her wheelchair, completed construction on a pocket door for Mimi’s room (it needed to be widened for years), and celebrated our grandson Jake’s second birthday. We are in serious love with the tyke!

Rick’s CT scan was this past Sunday … yes I said Sunday … at MD Anderson, the hospital that rarely sleeps. Our awesome daughter, Katie, took her dad for me while I hung out with our Mimi. If you have never had a CT scan, I can tell you do not feel compelled to add it to your bucket list. Not a fun way to spend your day. First you drink a large flavored drink in the waiting room. Rick chose “watery orange” this time. Yum! Then an IV is started. The rest is a mystery to me as daughters and wives have to sit and wait in the waiting room. After lots of hours, Rick came out all done and wasn’t glowing.

On Monday, we had an early morning appointment with the kidney surgeon, Dr. Karam. We pretty much knew from the beginning Rick’s left kidney (the cancer “mothership”) would be coming out. Now we would be getting a surgery date and meeting with the surgeon for the first time. Rick still wasn’t feeling well from the CT scan, so in my haste to pack crackers and nausea medication before backing out of the driveway, I neglected to bring any paper for taking notes. I just know it … someone is going to take away my Girl Scout card for not being prepared.

In the end, I wrote everything down on the back of a Kroger grocery receipt. Here is what he told us. We talked in general terms about the CT scan. No numbers or percentages. The phrase “mixed response” was thrown out. Surgery is Tuesday, May 24. Actual surgery takes about three hours, not including all the stuff happening on the front and back end. Hospital stay is two to three days. Recovery … about two weeks but still not running sprints. Interesting factoid about MD Anderson … they give you a surgery time the day before the surgery. The reasoning is surgeries get cancelled and then some surgeries get added so there are always lots of shuffling of the cards. Seems like it could work for the benefit of patients. I’ll let you know how well it works.

Today we had an appointment with Rick’s oncologist, Dr. Campbell. This is the visit I was most interested in as we’d get information on how the infusion drugs have been working. His first CT scan was in mid-February right before he was diagnosed. This was an important visit!

We learned that in just over two months, the tumor in his chest is reduced by forty percent. OK … double digits! The tumors in the lungs are clear. That means they can’t see them. Can I get an “amen?” The tumor in the liver is reduced by twenty-five percent. We were pleased with the number! The tumors in three bone areas “lit up” as unchanged, but it was explained that the CT scan is not a really good indicator with the bone. We will get further on down the road and perhaps at some point do a bone scan and get a better feel on those areas. The kidney tumor has not changed in size but doesn’t look the same. He was not concerned about this since it was coming out. Rick’s mission for the next four weeks is to get in shape for the surgery. Dr. Campbell suggested a personal trainer. He also mentioned yoga. Yeah … like that is going to happen. I don’t expect the Incredible Hulk in just four weeks but then again … I know an awesome personal trainer!

Bottom line … the tumors are responding to the immunotherapy infusion drugs. Clearly, the power of prayer and immunotherapy is working!

A cancer journey – week before infusion number three

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Infusion drugs!It was just fifty days ago that Rick and I officially stepped across MD Anderson’s threshold. That was mid-February. So far we have paid the hospital eighteen visits, mostly for diagnostic testing. In mid-March, Rick qualified for a clinical trial and started treatment with immunotherapy infusion drugs. This week we are between doctor/bloodwork/infusion visits. He gets a teeny bit better every day, nausea is almost nonexistent, but still has a long way to go.

Since infusion number two, Rick has spent his time working from home with red pen in one hand and yellow highlighter in the other pouring over engineering documents and drawings. Yep … it is all Greek to me! I have no clue what he is doing.

Reflection about MD Anderson – I’ve never been to a hospital that has the patient wear a hospital bracelet, hospital staff calls it a wristband, for months at a time. The wristband contains information like your name … but also your patient number. Rick’s is seven digits. The patient number is very important as it is one of the pieces of information asked for multiple times and scanned during a MDA visit. I’ve been married to Rick for so many years, I have his social security and driver’s license number memorized. And yes … he has been at MDA long enough that I now have his MDA patient number memorized. Oh, and when your wristband gets a little ragged the MDA check-in desks around the hospital have a little gadget that can print out a replacement in a snap! Rick is now on his second wristband.

Since no visits to MDA were made this week we took advantage of inviting worker dudes to the house. We have some home projects that have been on our to-do list since last year. Our very old and crusty water heater was finally replaced. I have been having nightmares it would spring a leak in the attic like it did about 12 or 13 years ago flooding my side of the closet and adjacent bedroom. Potential disaster averted! We also replaced the attic stairwell in the hallway and the cracked windshield on Rick’s truck. There was also a bid for a pocket door accomplished for Mimi’s room. In a few weeks, the doorway will be widened so I can navigate her wheelchair through without gouging the wood door trim. I also finished and dropped off a charity quilt. Future blog post!

This week I learned … waiting for infusion drugs to work takes lots of patience … and we are not patient. I also learned it is OK for Rick to rip off his MDA wristband because he doesn’t want to look at it for a week … and I expect MDA will gladly replace it next week.

A cancer journey – after the first infusion

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Infusion drugs!
Rick had his first infusion last week. That moment when the first drug started dripping was very emotional for both of us. We had experienced so many lows with weeks of diagnostic testing and each day I watched as Rick got weaker and weaker. Every time I pulled my car into MDA’s valet parking, I asked, “Do you need a wheelchair today?” I hoped he would say, “No … I can do this.” But four out of five times, he said, “Yes.”

Now as I watched the immunotherapy drug go drip, drip, drip, I teared up. And I also noticed the relief on Rick’s face. Anxiety lifted replaced with a kind of euphoria. This was real.

Five hours later when we were about to leave, the nurse whispered something into Rick’s ear. I found out later she told him the next three days would be hard. She was right. Rick ached all over, was incredibly fatigued, and nauseous. I made lots of runs to Smoothie King. Each day after that was a little better.

The following Monday, six days after the infusion, Rick is taking out the trash and feeding the dog. And now we are weaning him off the mega-meds. Wish me luck!

This week I learned … Smoothie King soothes a sour tummy … we can do this without a wheelchair … our immediate and extended family, parish and Shell family are so awesome in many ways … our stack of get well cards, as well as Masses said for Rick is approaching three inches thick.

A cancer journey … first infusion!

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Yesterday was a huge day for Rick at MD Anderson. We had our bag packed with prayer quilt from Martha’s Quilters, assorted snacks and our smiles! After twenty-two tests, meetings with doctors or staff over several weeks, we finally qualified for a promising clinical trial. On Monday, they randomized the three drug choices Rick would receive. We got the immunotherapy drug Nivolumab and Bevacizumab, which stops the growth of new blood vessels that provide nutrition for cancer cells. Just don’t ask me how to actually pronounce the name of drugs.

So I learned immunotherapy works with the immune system to treat cancer. Rick’s kidney oncologist explained that these drugs turn his T-cells into supermen and they fight the cancer. He will have a total of three infusions every other week for six weeks to cool the kidney down. Then that darn kidney gets taken out. After that … infusions for a long time.

His first infusion appointment would last five hours and it pretty much did. Rick’s oldest awesome sister, Bonnie, hung out with us in the Peach Suite on the 8th floor, where the infusion happened. We made it a party even though it was serious business. We had the nicest ladies on the planet taking care of Rick.

We get a break from making that trek to the medical center for a couple of weeks to concentrate on getting Rick well! It’s a good thing … gotta catch on my laundry!

Thanks for the cards, prayers and phone calls. We are so blessed.