A cancer journey – after the first infusion

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!

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

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.