A cancer journey – CT scan and infusion results

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 – the third infusion

Infusion drugs!

On Monday, Rick gave lots of blood for MDA to work with. It is MD Anderson’s clinical trial standard operating procedure. The following day we were to  see the doctor and have the infusion. I counted 15 vials of blood taken and I didn’t even faint. OK … I got a little weak in the knees maybe. I don’t know how the lab technicians do this all day.

On Tuesday, we met with Dr. Campbell, our kidney oncologist. Rick’s blood work continues to majorly improve. Yeah! Dr. Campbell also noted that if he didn’t know exactly where the lump on his chest was located, he would have missed it. He estimated the size now at approximately one centimeter. Lots of smiling while this sinks in! The CT scan in a couple of weeks will give us lots more information, but for now, the signs are all there that the immunotherapy infusions are working their magic.

Next we headed over to the MDA’s Main Building for the last of Rick’s long infusions of the two drugs. The Main Building reminds me of the wild west … a lot rowdier than the calm atmosphere of the Mays Building. It was new territory for us as we had always headed up to the 8th floor of the Mays Building for infusions. Not a big deal except I had to figure out where to go to get Rick’s IV started. It has been our experience, so far, the nurses who drip the drugs are not as well versed in starting IV’s. Not to worry … MDA has people that are expert IV starters. Just ask me … I will tell you where to find them.

The infusion started late and took four hours this time. Our world record was five hours … not counting waiting to get in the door! Yeah … you can burn a whole day hanging out at MDA but then they give you a warm blanket and the tension melts away. Katie drove her dad home for me again so I could get back home for Mimi’s bus. What would I do without her?

As I made my way to collect my car from valet parking I had my own adventure. Not to worry … no blood was spilled. The valet dudes were a little pokey in getting me my car keys. Instead a Valet Supervisor came toward me with a clipboard. Not a good sign. Seems one of the valet drivers backed my car, which has backup camera, into a concrete pillar and crunched one of the tail lights and messed up the paint. Really? In the grand scheme of things … not as big a deal as Stage IV Kidney Cancer … and they are paying to fix it.

A cancer journey – week before infusion number three

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 … promises and second infusion

Last year when Kate, our lovely daughter-in-law, was going through RCIA studying to become a Catholic, my husband made her a promise. He would be there with her at the Easter Vigil in Washington, DC when she officially became Catholic. A few weeks later we paid for plane tickets. I even did something I’ve NEVER done before … paid for four days of hotel on hotels.com. Oh yeah … we were going to be there … or be square!

Shortly after, Rick got the kidney cancer diagnosis and it didn’t look like that promise was going to be kept. I knew Kate would understand but Rick and I were both really upset. We had quietly prayed for over four years that Kate’s faith journey would lead her in the direction of the Catholic Church and now it was going to really happen.

Dr. Campbell told us it was possible Rick would feel better after his first immunotherapy infusion. Maybe even well enough for the trip. Not sure I believed him. But we clung to the possibility. Except the first infusion was delayed five times and time was getting short. Every time I spoke with our son, Ricky, on the phone I would tell him to be prepared that we might not come. Personally, I really didn’t think it was even possible considering how bad Rick felt. We were to leave on Thursday, March 24. That Monday before, we were still going back and forth on whether we should go. On Tuesday, my hubby said, “We are going.” He was a little better … but wouldn’t be running sprints in the airport.

The trip was way more fun for me than for my husband. It was the first time in months that I had sat in a restaurant and held an adult beverage in one hand … especially one so darn cute with lots of fruity stuff poking out the top. After the first three sips, I was calling my Sangria … Sagria. It was a magical night!

We had to majorly slow things down for Rick. He took lots of naps during the day. I also rolled him through the airport in a wheelchair. Rick barely managed to get through the three hours passion service on Good Friday at the Basilica of the National Shrine of the Immaculate Conception in Washington, DC. I don’t know how he did it. Well, it wouldn’t have happened without our son dropping us at the curb. On Saturday, Rick did have to miss the four-hour Easter Vigil. It wasn’t going to be over until 11:30 p.m. and I insisted on him hanging out at the hotel. Kate’s awesome mom recorded the big event on video for Rick to view later.

The day after we got back from our trip, we meet with Dr. Campbell right before Rick’s second infusion. The lump on Rick’s chest had turned from hard to soft and flattened out. Imagine going from a “D” cup to a “B” in two weeks. He is getting some of his stamina back and his blood levels look great. His doctor told us Rick’s improvement was “dramatic.” I love that word “dramatic.”

The second infusion went smoother than the first. Not much in the way of side effects. No MDA appointments for two weeks. We’ve got some home projects that need attention and I finally dropped off our income taxes.

This week I learned … it is lovely when you run into people you know at MDA like the amazing Ev and Joan Evans … oh and my daughter, Katie, is extra awesome. She drove her dad home from MDA when the infusion lasted longer than expected and I had to get back home for Mimi’s drop off by the day center bus. She is my hero! I also learned how much pleasure I get out of just getting the sheets washed when I realize I don’t have to be at MDA the rest of the week! I learned the simple pleasures of walking among the cherry blossoms with people that I love like Aleta, Sarah and Kate. I learned how much of an awesome adult my son, Ricky, has become. He took such great care of his dad and me on our visit. I got a little emotional when he dropped us at the airport. I also learned the priceless value of a kept promise.