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.

17 thoughts on “Cancer … a cautionary tale

  1. My husband and I have been on this cancer course for six years. Be sure and take care of yourself.

    Prayers for you and your husband….Nancy

  2. What complete hell you both have been through. I’m sitting here in Idaho frantically wondering, “What can I do? How can I help?” I can pray, and I’m doing that, but please, please tell me what you need, how I can help. Anything, Dixie.

      • I feel so useless. I know you’re getting lots of meals at the moment, but the time will come when they taper off. At least let me know so I can send a meal or two to you. I sure hope that having two sisters and two brothers will help at this time. Ask them to help. I know people want to do something, but lack the courage sometimes to come forth. Many times people just don’t want to intrude or don’t know what to do. Just let them know. I found after the fire that people really did want to do help, but I needed to actually say yes, I need your help. I’ll keep praying, cousin. Much love and God bless you all, Tina

      • I am learning to ask! Not easy for me. Just trying to get to that first treatment on the path of recovery. Now they think Monday. We really hoped it would be this week.

  3. Dearest Dixie,
    Ever since I first came into Martha’s Quilters, you’ve heard the saga of all we have been through. The support you’ve given me throughout all of our own journey has been a blessing beyond measure. I wouldn’t have you go down this road for anything. If I could take it from you, I would. But God has chosen this journey for you & Rick and your family, so I can do nothing but offer my support in return. I will tell you that there is no place better for you to be than M D Anderson!! The care there is just beyond compare. But, yeah, there is a reason the joke is that the M & D stands for “Most of the Day”!! The flip side of the waiting is knowing that one reason they may be taking so long to see you is because they are spending all necessary time with another patient, and if that was you in there needing their time, you’ll get it, too. It won’t always make the waiting easier, but it does help to remember that. The only practical advice I can give you is to use a carry-on rolling suitcase to carry things around while there. It will save your back & shoulders. Trust me on this.
    You are not alone. We got your back. And love & prayers go out to y’all every single day.

    • Thanks Cindi – obviously you are a cancer caregiver expert! And you proudly wear that badge! Waiting has not been the worst thing. It is just the reality and we accept that. We are hoping tomorrow at MDA will be a big day for us.

  4. Dixie, our hearts are full of prayers and love for you & Richard for healing, patience and the best doctors to guide you in the right direction. Prayers are our salvation and you all are surrounded by them. Love to you all.

  5. Dixie,
    You, Rick & the family are in my thoughts & prayers. You are beginning a journey together but know you are surrounded by people who care for you a great deal. I’m available to help in any way I

  6. We are so sorry for your sorrowful woes. These are helpful hints from our family from literally hundreds of doctor appointments. Keep a bag handy. Have it filled with iPad, iPod chargers, playing cards (sometimes, someone else need them), Kleenex, Purell hand sanitizer, a spiral notebook to note the date of an appointment and everything a doctor says, a test result or comments Rick may have that can prove useful later. This notebook is imperative! It will serve as your best friend when your memory fails and you need a reminder of a test result or a notation from a long ago test result. Keep a magazine or “fun” book in there to lift your spirits. Always have a rosary handy. The chaplains are wonderful if you need them. We know first hand that miracles are here at our fingertips. Our family will always pray for you. Love you. Love you.

  7. Praying daily for Rick, you and the family as you travel this road together. You are at the best place. My own experience at MD Anderson is something I would not have asked for, but the treasures learned are priceless. My prayers constantly said for healing,, comfort and peace. One of my fav scriptures is 2 Corinthians 1: 3-5. Now that’s comfort! Love you guys!

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