A cancer journey – knocking the dominos down one at a time

Infusion time!
Each early morning visit to MD Anderson reminds me of setting up a bunch of dominos on their short edges in interesting configurations. The hope is after touching the first one, the dominos will all fall, one right after the other, so we can hurry and get back on the HOV toward home before the sun sets. We still haven’t gotten used to the fact … it is probably not ever going to happen. It is why we take two cars for infusion day. That way I can be sure to get home in time for Mimi’s bus.

Maintenance infusion number three happened on August 11, and started with the usual bloodletting. Step two is wait to chat with clinical trial nurse to go over symptoms and blood work. We have always been told the wait is two hours to get back test results. So of course we left the 7th floor and headed down to Cool Beans for coffee and hot chocolate. We found a quiet corner table and Rick set up his phone with our favorite playlist for some chill time.

We headed back to the 7th floor only to find out they were looking for us an hour before to get started chatting early with the clinical trial lady. So much for speeding things up on our part. We won’t do that again. Good news … Rick’s lipase number continues to improve. He is back at the top of the normal range. We chatted with the PA, the lovely Simi, and Dr. Campbell paid us a visit. Turns out he read my blog. It seems I remind him of his mother, who is also a quilter and, I think, teaches English Literature. Who knew? Step three … we headed to the eighth floor where the infusion would happen. We check-in and then go to lunch before heading back up to wait some more. This part of the day is always where Rick and I turn into grumpy bugs because of all the waiting … sometimes three or four hours just to get sent back into the room for the infusion. It is painful. I know lots happens behind the scene until the infusion finally goes drip, drip, drip for an hour. Then wait another hour afterward, for side effects, and finally head for home … in time for dinner.

Note to self … always go to infusion therapy to get IV started. We forgot this time. Some of the ladies in charge of the actual infusions don’t do that part very well. It is painful to watch. I can imagine how Rick felt.

Fast forward to yesterday and maintenance infusion number four! It was pretty much rinse, wash and a repeat of the last one. Only this time MD Anderson had installed IPads on the wall near the check-in desks. The concept sounded like it might work, but I think they need to tweak that one a little. After IPad check-in, you sit down and wait to be called on your cellphone to head toward the check-in desk to get your mandatory MDA “wristband.” The IPad also forgot to inform the MDA peeps that only do “vital signs” that Rick was in the building.

Bottom line … this time we didn’t leave the 7th floor for Cool Beans. Well … actually I left and came back with coffee and hot chocolate. Rick’s lipase is still dropping. It is obvious now the high level had something to do with his kidney removal surgery. Rick had his IV put in by Infusion Therapy peeps. He didn’t get a good one. She stabbed him twice before Rick requested someone else. Then finally the infusion after a long four-hour wait. Rick made it home again in time for dinner.

To mark our continued progress, we are now collecting the wrist bands we cut off at the end of infusion day to visualize how far we have come until the trial finishes in March of 2017. I wish we had started this at the beginning. We would probably have 40 wrist bands by now with all the testing and other doctor visits.

In September, we have two more maintenance infusions, MRI and CT scans. It will be interesting to see if things continue to shrink.

So the dominos … they continue to fall. Maybe not always in the orderly way we want them to. Lord, I think we need to add patience to our list. We continue to feel so blessed and thankful for Rick’s return to good health.

A cancer journey – getting the word out!

Infusion time!The past couple of weeks I’ve been working with MD Anderson’s communication’s person writing about Rick’s cancer journey. The story has appeared live today and I wanted to provide a link so people who are not my friends on Facebook can also read it. It has the potential to reach over 285,000 people with their blog, Facebook page and Twitter account.

Rick and I want people to be pro-active about cancer. We want people to know about clinical trials and immunotherapy and our experience at MD Anderson Hospital! Cancer is such a scary word. The past couple of months several people have told me about one of their loved ones’ new cancer diagnosis. It brought me right back to that dark place in my heart when, in February, we were approaching the edge of the cliff of possibly having to plan a funeral. But there is so much good work being done especially at MD Anderson Hospital and so much hope.

Follow the link below to view the blog post. We still have work to do … but this is our cancer success story in a nut shell!

https://www.mdanderson.org/publications/cancerwise/2016/08/Nivolumab-Bevacizumab-clinical-trial.html

A cancer journey – struggling with the schedule

Infusion time!

Two weeks ago, Rick had his first of many “maintenance” immunotherapy infusions of Nivolumab for the clinical trial he is on for his clear cell kidney cancer. The hope is the drug will re-train his “T” cells to recognize and destroy any remaining cancer cells.

Fast-forward to yesterday and we were hopeful to get the go-ahead for “maintenance” infusion number 2. We gotta do this every two weeks for about 20 more months … not to mention scans every few months. It is going to be a very long haul … but I believe the worst is behind us. I’m still trying to wrap my head around the fact that Rick had a kidney/tumor removed two months ago. Seems a little surreal. Rick has been back at work for the last few weeks and was finally cleared to climb on all that fun metal stuff at the plant.

It is why Rick and I have been huddling with the calendar trying to figure out how to integrate these MDA visits into our lives with work and family. The whole infusion thing reminds me of baking cookies. The infusion recipe has a specific order and involves several ingredients starting with blood work. Actually, Rick and I lovingly call it an old-fashioned bloodletting because they take over a dozen vials of blood. That is done the day before, or at the very least two hours prior to meeting with the clinical trial research peeps. She asks bunches of questions to see how Rick is doing and records the answers on a computer. I don’t think she found a spot to record my answer, “Rick has his sense of humor back!”

Next ingredient … we stir in a meeting with the PA, the lovely Simi, and sometimes Dr. Campbell, the oncologist. If all the blood work looks fine, we head to another floor to bake at 350 degrees or until done. Actually, that is where we go for the actual infusion. Like waiting for bread to rise, that part involves waiting around for a couple of hours for whatever goes on behind the scene and finally the infusion. Why am I telling you all this? Because these infusions days can easily burn a whole workday.

So Rick and I tried an experiment this week with the schedule. Rick drove to MDA from work late in the day on Wednesday for his blood work. On Thursday, Rick and I met with the clinical trial “team” in the early afternoon and was approved for his infusion. We figured it would be way easier to make up a few hours at work then a whole day. Good news … his lipase numbers had dropped again. Rick was now so close to the absolute top of the normal range. Actually, there was a few minutes when it looked like we might be sent home again. Imagine throwing out a perfectly good batch of unbaked cookie batter. It felt like that!

I left MDA at 3:30 pm to head back to meet Mimi and her bus. Rick finally pulled up into the driveway after 7 pm. I could tell by the look on his face this wasn’t going to work and he had a “Plan B” in mind. I have a call into Dr. Campbell’s awesome scheduler, Lauren. Hopefully, she can work some magic for when we head back down to MDA in two weeks for “maintenance” infusion number 3.

A cancer journey – did they let us back on the freeway?

Infusion time!
When last we left off, Rick experienced, what we hoped was a little detour in his cancer journey. It was the first, and I am certain, it won’t be the last. I know that now. It is a very humbling experience to hear you may not be able to continue on your clinical trial … all because of a blood test result. A test on Rick’s pancreas two weeks ago reported his lipase level at 1602, with the standard range between 23 and 300. Not good. It is why we were sent home two weeks ago instead of receiving his very first “maintenance” infusion and put on “evaluation” status in the clinical trial.

We were to await an appointment with a GI doctor to rule out pancreatitis. That last-minute appointment finally happened yesterday. We met with Dr. T. That is what they call her as her name is not to be easily pronounced! After a long and thoughtful consultation, looking over labs and scans, it was determined that Rick did not have pancreatitis. Dr. T also asked me how Rick was doing. I told her this guy is back at work, working out with light weights, eating everything in the house that is not tied down and has his sense of humor back. Yup … it was her opinion the lipase elevation is likely due to the infusion drugs. But would they return to normal?

Today we left the house at 7 am for blood work at 8 bells. Two hours later we met with the clinical trial nurse and Dr. Campbell’s PA. If the blood work showed a decrease on the lipase test, Rick would have an immunotherapy infusion. Unfortunately, the lab didn’t perform the lipase test. A simple snafu for sure which increased the tension. Back down to the lab we went! We got Tazz to draw blood. He has a Looney Tune’s Tasmanian Devil on his scrubs. Another two-hour wait. We cruised to lunch at a restaurant in the Rotary House. The sit-down restaurant has a nice lunch buffet which was worth the stroll from the Mays Building.

At 12:45 my cell phone rang. Dr. Campbell told me the lipase declined 1200 points and Rick could run over to the Main Building for his infusion. Just like that! A simple phone call and we were allowed back on the freeway. But not too fast! More waiting and it was finally around 3:30 when the immunotherapy drug started dripping. During “maintenance” there is only one drug involved. Cuts the actual infusion time down to about an hour instead of three. Immunotherapy should continue every other week for the next 20 months … if there are no detours.

So I call 3:30 pm the witching hour when I am at MD Anderson. I gotta be out of the parking lot to head back home before Mimi’s day center bus rolls in front of our house. Thank you Lord for the HOV! So I leave Rick to finish his infusion and our awesome son-in-law, Chad, does a MD Anderson drive-by after work depositing hubby home safe and sound.

What I learned this week … life can turn on a dime many times … blood work is important and I don’t understand it all very much … except for lipase. I also learned that unexpected good things happen at our house every few days … like Michele texting me she has extra and brings a delicious dinner and her cute dog for Mimi to pet. And cards appear in our mailbox every few days. This week from the newspaper I write for, The Tribune. One card for Rick, and one for me, signed by everyone in the office with lovely little notes. Made our day when we weren’t having a very good one! And then there was a long phone call last week with Aleta … we call each other “sista” … she is actually my lovely daughter-in-law’s mother and lives far away in Michigan. It was one of those tough days and she made everything better.

And my favorite little text relay early in the day with my little sister, Gretchen! “Big day at MDA today! Maybe infusion … maybe kicked out of trial!” I texted.

“I vote for infusion,” Gretchen texts.

I spy charity quilt finished!

At the beginning of the year, I made a list of all the quilts I was going to complete this year. The list reads: two I Spy Jar quilts (one for charity and one for grandson Jake), 2015 Texas Row-by-Row, an adorable mystery quilt from Fat Quarter Shop … and then there is a baby quilt for a new grandbaby that will make his debut in November. I really gotta get started on that last one. Yup … Jake is going to be a big brother! We are like the cow in the nursery rhyme … over the moon!

When I made the list, I thought five quilts seemed reasonable. Then cancer knocked on our front door and I took up knitting in hospital and clinic waiting rooms. The scarf … it is about five miles long now.

In April, I did manage to finish an I Spy quilt I had promised to St. Martha’s School in Kingwood for one of their charity events. Hope it made a bunch of money for the school!

I have several other quilts in various stages of progress. Whenever I have a spare thirty seconds, I’m in my sewing room working on one. It keeps me sane.

But back to the I Spy Jar quilt. The pattern is by Missouri Star Quilt Co., one of my favorite online places for patterns and fabric. Store owner, Jenny, has great online quilt tutorials. The pattern comes with directions for either pint or quart-size jars. My quilt has pint jars. At the time I purchased the fabric, MSQC also offered an adorable fabric pack of ten-inch squares with novelty prints that were perfect for this quilt. Made it so easy and with the 10″ squares I have enough to make four quilt tops in anticipation of future grand babes! I added a couple of novelty Minion fabrics that will appear in Jake’s quilt.

I used the fabulous Kim Norton of A Busy Bobbin to longarm quilt the layers and Personalize It for the quilt label. Oh … did I mention the cute lady bug fabric outlining the quilt label? It is a Charlie Harper fabric. I have provided the link (search for “Charlie Harper”) as they have some pretty cool fabric you might just need to have for your very own!

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

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

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!