md anderson cancer hospital

A cancer journey – kidney surgery post-op … and an unexpected detour

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Kidney pillowWe have been dreading Monday since we saw the appointments listed weeks ago on Rick’s MDA patient portal … blood work, appointment with Dr. Karam (kidney surgeon), CT scan and MRI. It had been five weeks since Rick’s left kidney was removed and we were just ready to get back on immunotherapy infusions on Tuesday. But first post-op appointments! It was a long stressful day with lots of waiting. I guess we had both worked ourselves up into being grumpy bugs. Rick didn’t make it through the back door until 9:30 pm.

The highlight of the day was the appointment with Dr. Karam which went very well! Rick is cleared for normal activity and like a long football pass into the end zone he handed Rick back over to our oncologist, Dr. Campbell. We would see Dr. Campbell the next day. Nothing majorly amiss on Rick’s bloodwork taken a couple of hours earlier. Dr. Karam was also making us an appointment with a kidney doctor to teach Rick how to take great care of the one kidney he has left.

My big question was will Rick be able to lift things normally at some point. During the past five weeks of recovery, Rick was instructed not to lift anything heavier than a gallon of milk. Helping lift our handicapped daughter was obviously not in the program. When Dr. Karam said, “Yes, but over time,” I was excited. Of course, if I were able to hear Rick’s thoughts, I am sure he was thinking about that next great big fish he was planning to catch!

Just as Dr. Karam was about to leave I said, “Wait, we have a present for you.” You should have seen the look on his face when I handed him the plush purple “kidney pillow.” Hubby received the kidney from our grandson, Jake, after his kidney removal surgery.

“Is it filled with kidney beans?” Dr. Karam smiled.

He had never seen anything like it. Turning the kidney around, he remarked how the pillow was actually the right kidney. We all chuckled.

“I’ll put this in my office. Will you autograph the tag?” Dr. Karam said.

On Tuesday, Rick and I backed out of the driveway after Mimi left for her day center at 7 am and hopped on the HOV to the medical center. The plan was first bloodwork, see Dr. Campbell and then start back up with immunotherapy infusions. At least that was the plan. As I have explained in a previous post, the bloodwork they do for a clinical trial is so much more extensive then the normal stuff. Yesterday, three vials were taken. On Tuesday, Rick counted 16. Next we started our appointment in Dr. Campbell’s area meeting first with the nurse, then the clinical trial research lady, who asks questions and goes over lab results. She mentioned we would be entering the “maintenance” phase of Rick’s treatment. I liked the sound of that. Everything was looking like we would soon be headed to the 8th floor for an infusion when she said, “wait.” One of the tests on the pancreas came back elevated, but she would let Dr. Campbell talk about that.

First the good news … even though it has been eight weeks since Rick’s last immunotherapy infusion, the remaining small tumors continue to shrink. How was that possible? Dr. Campbell used the word “remarkable,” my new favorite word. He also mentioned the areas in the bone were “healing.” Great news! I was wondering when we were going to talk about the bone areas.

Then Dr. Campbell explained that Rick’s pancreas was inflamed. Obviously, this was not something that was screened for on Monday. His pancreas levels had previously been normal although the bloodwork was all pre-kidney surgery. Dr. Campbell explained the elevated numbers could be as a result of the surgery … or the immunotherapy drugs.

One of the other causes is drinking LOTS of alcoholic beverages. Since one of the restrictions of the trial is no alcohol that one was scratched off the list. Rick hasn’t even gotten close enough to a beer to sniff since he has gotten on the trial! Dr. Campbell  mentioned that in clinical trials their goal is to “do no harm” and Rick would be referred to a GI doctor to find out what was happening with his pancreas. Obviously, the immunotherapy infusion did not happen on Tuesday. The possibility also loomed like a dark cloud that Rick could be removed from the clinical trial.

We left MDA and headed home. What just happened? I wanted to cry, but no tears spewed from my tear ducts. This is just a little detour. We wanted to go straight down the road and were asked to exit the freeway. Not a great reason for tears.

Please don’t stop praying for us!

A cancer journey – recovery from surgery

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Heparin
Rick is now in recovery mode 15 days after having his left kidney and cancerous tumor removed. We just finished his longest walk ever … probably one-quarter of a mile … around the block! Things are looking up!

In the beginning, most of his recovery days were a challenge. Had to help him get into a sitting position from the bed … he slept most of the day … eating not so much … requests for pain meds. None of those things are happening now.

Of course I’ve had lots of help. Rick’s awesome sister, Bonnie, has been staying with us for nearly two weeks. We are great at tag-teaming between caring for Rick and Mimi, our daughter in a wheelchair. We can’t even talk about Bonnie leaving on Saturday. Getting the Kleenex ready!

I’m getting pretty good at giving Rick the heparin (prevents blood clots) injections three times a day. Think I only performed one really sorry-excuse- for-a-needle-stick once … maybe twice. Today is “day 11” of 28 days. The bowl of heparin doesn’t appear to be shrinking.

This week Dr. Karam, the kidney surgeon, called to let us know about the pathology report of the removed tumor. It was stunning news. The margins were good and ALL the cancer cells in the tumor were dead.

I didn’t know what great news this was until I spoke with Dr. Campbell, the oncologist, the next day. He told me he had never had a patient have the primary tumor completely killed by immunotherapy drugs. He had one patient come close. I remember Rick telling Dr. Campbell when we first started this journey he was going to be Dr. Campbell’s “star pupil.” Obviously, Rick does not disappoint.

The end of this month we travel back to MDA for post-op appointments and start back up with infusions! We have more tumors to destroy!

A cancer journey – kidney removal surgery

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It has been a week since Rick’s left kidney/tumor was removed. Whoever said it “takes a village to raise a child” musta also been talking about someone having major surgery. Throw our special needs daughter into the mix and the village quickly became a small metropolis. Our son, Ricky, and lovely daughter-in-law, Kate, flew in from Washington, DC. Our daughter, Katie, along with son-in-law, Chad, and even grandson, Jake was also there to help. We thought we had all our ducks in a row with our dream team in place! After all, hubby was only going to be in the hospital two to three days tops.

A day before surgery, my friend, Mary, stopped by with fruit and sandwich trays with a card signed by so many people with special needs connections. There was also homemade brownies from Sandy, and macaroni salad from Jan. I gotta get that recipe! How did they know I hadn’t thought about feeding the dream team?

On the morning of the surgery, Katie surprised her dad in the surgery waiting room with a visit from Jake. It was magical watching Jake run toward Rick yelling “Pop-Pop.” Nothing like your favorite two-year-old crawling in your lap to lessen the tension. We didn’t know it at the time, but surgery day would be twelve long hours until Rick finally made it into his hospital room for the night. We were updated so much along the way from meetings in pre-op, to surgery updates every two hours, and finally visiting in recovery. When we met with Dr. Karam, the kidney surgeon, after surgery we learned the kidney/tumor removed was the size of a cantaloupe. I will never forgot how he held his hands up to represent the size of the tumor/kidney. Everything went as planned!

In a vague peanut shell … the details you don’t want to know … the hospital stay lasted five days and nights with lots of walking the halls trying to get his gut to wake up. Seems thirty percent of patients have this challenge after surgery and we just had to wait. Someone spent each day and night at the hospital. It was a regular relay team. I only had plans in place for people staying three nights. I took one night and Ricky stayed two. When things dragged on through the weekend, I called his brother, Gary. Our Katie also spent a night. The nights were especially challenging. At MDA they wake you up at night for something every couple of hours. I got the feeling sleep isn’t a priority at MD Anderson. Getting well is!

I think it was on day two that Katie, Jake and Chad paid a visit to Rick’s hospital room. Jake was bringing Pop-Pop a stuffed purple “kidney” pillow. The plan was for Jake to enter the room and say, “Pop-Pop I think you dropped something,” and then hand him the kidney pillow. I think he only got the words, “Pop-Pop” out but you get the picture!

Sometime during day four, the nurse said I had to watch an instructional video to learn how to give Heparin injections. Yep … I would be giving Rick injections three times a day for 28 days. Lucky me! After the video the nurse had me practice on Rick. Good thing the needle was small … very small. I can do this … but I will be glad when we are finished!

We are now in recovery mode at the house, getting lots of sleep, and better every day. When Ricky and Kate boarded the plane for home, Rick’s awesome big sister, Bonnie, came to stay for a couple of weeks and we are tag teaming nicely!

Things I have learned … my neighbor, Marie, makes the best soup and decorated “happy face sun” sugar cookies! She always me smile! I learned that when someone sends you an email asking how they can help, you write them back. I asked for help bathing Mimi … and then they also brought Mimi and I holy communion and homemade cookies and muffins. I am so blessed. I also learned that sometimes people know exactly what you need without asking. And I learned the reason I never considered becoming a nurse … giving injections!

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 – 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!