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 – the third infusion

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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

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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 … promises and second infusion

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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.

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.

Cancer … a cautionary tale

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Lots of wheelchairs to borrowLife turned on a dime at our house on January 5 of this year. The date is important. Sure … we knew something was wrong around Thanksgiving of last year … minor stuff really … or so we thought. There was a slight loss of appetite, serious sinus issues, and a persistent cough my husband couldn’t shake, along with the loss of some weight. But never in our wildest nightmares did we suspect it had anything to do with that dreaded six-letter word … cancer.

Two months have passed and we finally have a real diagnosis. Haven’t started our plan of care yet. Maybe this week! But how did we get right here to this very spot in time? We can talk about it now. And I have Rick’s permission to write about the journey, but you won’t see a picture of him. He is kinda shy. Heck, we totally believe a year from now, we will have gained so much knowledge from living in the tornado that maybe we can comfort and educate those who must travel the same journey.

This first post about the beginning of my husband’s cancer journey will be long. After all, lots has happened, and already, so much learned. So like I said earlier, everything changed on January 5. It was the day Rick was putting up Christmas boxes in the attic. He had a challenge shoving one awkwardly large box into place. Afterward, I noticed him huffing and puffing and then quickly moving to sit on the couch. Shortly after that a large lump appeared on his left breast. It burned and hurt. What just happened? A few days later Rick had an ultrasound at a local clinic. Two days after that Rick had the test results. He was told it could be one of four things … nothing major … but highly unlikely to be cancer. The doctor said, “we can just watch this if you like.” Not a good answer as far as we were concerned. I got a copy of the ultrasound and the CD which we shared with Rick’s cardiologist to get direction on our next step.

At the same time all this was going on, Rick had several appointments with an ENT in the medical center. His drainage and coughing were just awful. Nothing seemed to be working and the ENT was shaking his head a lot. He next recommended allergy testing and we went down that road for a short while. In retrospect, was Rick’s immune system trying to tell him something?

So the end of January, at Rick’s cardiologist’s recommendation we saw a breast cancer doctor to figure out what was going on with the lump. There was one in the medical center that he highly recommended. It only took a week to get that appointment. Geez … the weeks were rolling by and still we didn’t know what was going on. Oh, and Rick was having some pain issues on his left side in the back area. What was that about?

So the breast doctor recommended a needle biopsy and performed the test in his office. A few days later it was Fat Tuesday, February 9, when we got the call. More than a month had already gone by since the lump appeared. You know when a doctor calls instead of a nurse-type person something might be wrong. The test came back as breast cancer with Grade 3 aggressive cells. You could have knocked me over with a down feather. But further testing was needed to determine the stage. Unfortunately, this doctor was not connected to M.D. Anderson Hospital and that was where we needed to be.

So in limbo we sat for another week … Rick in lots of pain … nausea beyond belief … and so weak. We weren’t connected to a cancer doctor yet. I took him to see the awesome Dr. Young in our little hometown for some help. She got Rick fixed up with pain and nausea medications. Better yet … she listened when we explained the unusual pain and told us she believed there were something going on in the back area that needed immediate attention. She sent us home with a note for MDA recommending a CT scan post-haste! Bless you Dr. Young!

Two days later we finally entered the automatic doors of M.D. Anderson Hospital. We spent several hours in their Mays Clinic on the 5th floor with testing. The following day we met with a team of doctors and were told Rick had Stage 2 Breast Cancer with Grade 3 aggressive cells based on the prior biopsy. They seemed puzzled though. I could tell. Rick has nine sisters with no breast cancer. Rick had no markers either. They gave us a plan forward, including more tests, with a CT scan set for the next day.

Another day … another test. You get a choice of flavored drink and then you have the CT scan. The breast oncologist had us come into her office a few days later. In one week, Rick went from Stage 2 Breast Cancer to Stage 4 Kidney Cancer with tumors in his chest, liver, both lungs and 3 small areas in the bone. She handed us over to a Kidney Oncologist and we again waited … for a few more days … to see the new oncologist.

Dr. Campbell is a straight shooter. He had a plan but first more testing to see if the kidney cancer was the kind where Rick could participate in a very promising clinical trial. More testing to figure that out. How did I not know that was going to be the next step? We are close to getting started on the road to recovery. So close. In the meantime, we also visited Supportive Care at MDA. I learned they help patients manage cancer symptoms. They tweaked the pain and nausea medications that still plagued Rick. We have to get this dude on his feet again. I am wheeling him around in a wheelchair at M.D. Anderson and that is not good!

For several weeks we were spending three days a week at MDA testing and in meetings and are getting tired. But we are not alone. We have an awesome daughter. Katie has attended several doctor’s meetings lending a couple of extra ears and taking some great notes. Our faraway son and lovely daughter-in-law are just a plane ride away. We have extended family that have offered to help in the weeks to come when things get really crazy. We have Rick’s office mates dropping off meals three days a week. Thanking so many people for powerful prayers, offers of whatever we need, Masses, a care basket, and so many kind thoughts. The prayer quilt ministry I volunteer at even put a lovely prayer quilt on the fast-track. We are overwhelmed.

So our cancer journey begins. So far I’ve learned to persevere … the absolute correct diagnosis is critical … it is okay to cry … we can’t do this alone … it is okay to accept help … M.D. Anderson is the place we need to be … the HOV lane gets me to the medical center quicker … and if you have cancer there will be lots of tests.

Our Adventure Wall

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I saw this post on Facebook the other day about “How to Hang Pictures.” It made me think about our “Adventure Wall” in our family room. I have always meant to write a blog post about it. One photograph gave me the idea for the wall. It was one of our son while he was studying abroad several years ago in Spain. Ricky also had the opportunity to travel all over Europe. Oh, and after college graduation he traveled throughout Peru for three weeks with his sister. They brought back hundreds of amazing photographs. But there was one particular photograph of Ricky curled up in a window opening in Dubrovnik that always made me smile. It caught the essence of this funny guy that I call … my awesome son!

But you know … I’ve gathered lots of photos over the years and finally decided it was time to display them so I could look at them all the time. My daughter, Katie, is also a world travel and inspired us to do some traveling. Yep, we have a few hundred photo memories of our own.

Collaborating with the engineering hubster, we came up with a plan. I picked my absolute favorite sixteen photographs … eight horizontal and eight vertical. I had them enlarged to 11″ by 14″ and purchased mats and frames on sale.

It took us one whole day to hang the photos. Hubby utilized his AutoCAD program so we would get super precise with the layout.

Now when I walk past the wall … I dream of where that next adventure will lead us.

I went to the Houston Car Show … by myself!

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Yep … I’m a rebel. I went to the Houston Car Show yesterday all by myself. There is a good reason for that! We are in the market for a wheelchair accessible vehicle to take our special needs daughter on adventures. The car show seemed like a great place to check out accessible vehicles. Follow link above to find out everything you need to know about the car show!

So for the past four years, hubby and I have been lifting Mimi out of her wheelchair and securing her in the back seat of our normal “not accessible at all” car. Then we break down her wheelchair and collapse it, stow it in the back, and off we go. Some time over the past few years we got older … which kinda sucks … and Mimi packed on a few pounds so I could no longer lift her by myself into the car.

I don’t know when they came up with the technology, but they now lower floors on minivans and have manual ramps that even I can use all by myself! I’m thinkin’ this may be the way to go! Mike Murphy, with Adaptive Driving Access, showed me around and we chatted about the process. Thanks Mike! Hopefully, in a five or six weeks Mimi will have some new wheels!

So since I was there anyway, I decided to take a gander at all the really cool cars. Lots of eye candy! The last day for the Houston Car Show is Sunday. Be there … or be a square, rectangle or a triangle.