Boarding the 'C' Train: A Journey We Never Asked For

My husband, Mike, had always been healthy "as a horse" as the saying goes. But in December of 2017, things started to change.

He began to lose weight. His "color" didn't look good. And then, he started having fainting episodes.

After several ambulance rides following a fainting spell here and there, and a few doctor visits, we were referred to a kidney specialist.

They had determined there were several things "going on" with my husband, including acute renal failure.

Before we could even get started with treatment and seeing the new specialist, my husband's primary announced he had someone else he wanted him to see.

An appointment was made, and the day it came we headed off - optimistic we would finally get more answers, and more importantly, solutions.

February 13, 2018

We thought we were going to visit with someone who was a "blood specialist". We thought from here on out it was most likely going to be a "simple" fix and he would soon be back to normal.

We couldn't have been more wrong.

When we showed up at the address for the new appointment, Mike turned to me (obviously in a bit of a panic) and asked, "what am I doing at the cancer center?"

I told him I didn't know, maybe it's just where this new doctor's office was located. I told him, and myself, we shouldn't worry before we knew for sure what was going on. Entering those doors, we had no idea how many times we would be going through those doors.

We met with Dr. Jose Velasco and the first thing he asked us was, "what have you been told about your condition?" We told him Mike had been diagnosed with anemia, acute renal failure, pre-diabetes, and we had been told there was a possibility of some kind of blood or bone marrow disease.

What I didn't tell him was I had "googled" blood and bone marrow diseases and had seen "possible" culprits that could be behind what was going on.

Dr. Velasco began shaking his head in the affirmative and added, "Yes, you have a blood disease - I think you have multiple myeloma and I want to do a biopsy today."

Totally in shock, I remember saying (actually more like yelling) to him, "That's not what you were supposed to say...."

Multiple myeloma, one of the many forms of cancer, was one of the possibilities which had come up SEVERAL times when I was doing my "googling", but I guess I was living in denial because I didn't want to believe cancer was what we were facing.

We never dreamed my husband would be seeing a cancer doctor, let alone at the very first appointment be having a biopsy done. But it happened.

Dr. Velasco asked if I would like to wait in the other room because it might get a little "bloody". I responded no, I would stay with Mike.

Blood didn't bother me, but the sound of the drill and watching him struggle to keep from flinching from pain still present in spite of numbing shots he was given to prevent it - that bothered me.

Before we left, the doctor said we would have the answer in a few days. True to his word, it was confirmed - he wanted to start treatment immediately. Our ride on the cancer train had begun.

Treatment

Mike's chemo treatments started right away. We soon learned just one treatment of the drug he needed could cost upwards of $10,000. Mike continued to work for as long as he could, but he now had some restrictions. The type of blood cancer he had was accompanied by bones that weren't so strong. He could sneeze and it would break a rib.

He "attempted" to follow the rules: no lifting over a few pounds, getting lots of rest, watching what he ate, not going over board with physical labor and cutting back on his hours.

Mike and I had both been working more than one job each before we ever met - something we continued throughout our marriage. It was what we did. We worked. We took care of our family. We survived. Whatever were we to do now?

We sold things. We worked when we could. We did without. We accepted help from others even when pride made it tough. We adjusted.

There were constant appointments. There were trips to Mayo in Rochester, Minn. There was a lot of reflection of what we were going through. Where we had been before and what our future, if there was one, might now hold.

The Prognosis

Being someone who likes to research things. I found myself looking up everything I could on Multiple Myeloma. I sooon learned the prognosis was not good. It was possible to survive, but it definitely was not good.

By the time Mike's cancer had been found, it had already taken a huge toll on him. And we soon learned even being told he was in remission did not mean the coast was clear.

With Multiple Myeloma, you can go in to a "remission" of sorts, but the cancer is never really gone. The treatments are basically there to help keep it from growing.

Lifespan of someone with the disease was one to five years. And we didn't know how long he had already had it. Mike was a tough old bird. Even though when he got a cold you would think it was the end of the world.

When he was diagnosed with cancer, most of the time people didn't even know he was doing badly. He rarely complained. He continued to work as long as he could. When I would ask him about things going on with him, he would respond, "it's just another rock in the road."

Reflection

Due to all of his care, we suddenly found ourselves spending more time together than we ever had. We began talking about our will. We began talking about all of the things we had always wanted to do and never had done.

We spent many hours just sitting together and not saying a word. Just being together.

A "bucket list" was formed. All the things we would love to experience and had not been able to because we had always been "too busy".

And there were many conversations about what would happen next. Many times he would look at me and tell me I should divorce him. He thought he was too much of a burden. He said it cost too much for him to live.

I always told him he was not a burden, and when I said "I do" it wasn't just for the butterfly and roses times. It was for the not so easy and  "real, hard, ugly times as well."

What We Learned

We did our best to stay optimistic, but each time the doctor came into the room during one of Mike's appointments, we looked for the signs. If he came in without his assistant, pulled up a chair close, and looking like he had just lost his best friend - we knew the news was not going to be good.

We asked ourselves over and over again, "what did we do to deserve going through this?" But just as quickly, we thought about the many people we saw at Mayo and at the local area cancer clinic. They didn't ask for this train ride any more than we did. Nobody would have asked for it.

Constantly we went over the wish we would have done this or that - the what ifs and why nots. Nothing made sense.

In 2018, they wanted to put Mike on Hospice care. He insisted they try something else. They did. It didn't work. The second time Dr. Velasco brought up hospice, he told him he was not going to give Mike any more treatments because they were doing him more harm than good. We asked how long he thought Mike had. He said two weeks. One week later, August 14, 2018, he was gone.

My quiet, hardworking, quirky man never asked for that train ride, but he got it anyway. He fought it hard, but in the end it was not enough.

When Dr. Velasco asked if there was anything he could do for me, I had one request - to have someone ring the gold bell on behalf of my husband. The bell so many who have gone in to remission or became cancer free have rung.

He may not have beaten cancer in the way we would have wanted. But he is cancer free. I know where he is now.

Because of this ride, we learned to appreciate the precious commodity called time. We learned "stuff" is not that important. Memories and time; however, are more valuable than gold.

So make those memories, spend your time wisely.  There isn't always going to be the opportunity for a do-over.