Just Don’t Know

Sixteen months post Car T and gratefully not much has changed since the last post. Numbers are holding steady regarding the monoclonal peak and other cancer-related figures. I am still having issues with both my ANC (Absolute Neutrophil Count) level and my IgG numbers being well below normal. We are managing those two situations with monthly injections for the ANC and every six-week infusions for the IgG level. I am still moving forward.

This past Thursday, while waiting in the lobby of the clinic for my blood draw, a lady who was also in the lobby looked at me and so I asked her how she was doing. She said fine. She was waiting for her daughter to come back from her check-up. Her daughter was the one who was being treated for a blood cancer (her daughter was around thirty-two and in for a follow-up visit on a just-finished transplant. Her two-year-old grandson was” back there” with her daughter). She asked about my situation. I told her that I was somewhat of a veteran regarding blood cancer having weathered MM now for over 10 years and was in for a routine blood draw.

Then we were quiet.

And then she looked at me and asked me this question: “Does it ever get better?”

Well…….

 I was somewhat gob smacked. And I did not know why. We were in a cancer clinic. And a question such as that one would be high on the list of questions that zoom through a person’s mind when they are in the throes of a cancer protocol.

I was silent. And unexpectedly, I realized that for me, cancer (MM) treatments have become somewhat routine. If I want to live, I go to my treatments, blood draws, infusion, etc. and that is that. Yes, for me it is very routine (at least right now).

However, there was a question on the table, and she was waiting/expecting an answer, so I had to re-focus.

Finally, I said something like “I do not know. I don’t know if I can define better. Let go of the idea that your daughter is going through these treatments and transplants and infusions and whatever else she will be or has been going through for any specific purpose other than making it to the next day. Eventually, it gets easier to live with. It just becomes a part of your life.

Better is a moving target.

Defining “better” is something that is extremely personal. Sometimes the desire for better results can add additional worry to my journey and I have found the less I worry the smoother the ride.

Maybe, the question at hand was not about becoming better but about it becoming easier. I do not know.

I continued very softly: “Look, life will never be as it once was. You cannot go back or spend a lot of time longing for the life you or she once lived. That is over. She/You can never go back to being pre-cancer. It is tough trying to wrap your hands around the condition of being a cancer patient. It is sometimes difficult to make sense of the situation knowing that survival/a future does not come with a guarantee and that much is outside of our control. I have learned and am still learning that after ten plus years. It does me no good to wish and hope and dream about life without cancer.

As a caregiver, I imagine it is easy to long for something better or easier for those who require your care. You love them. You hate to see them suffer, struggle, or have a tough go of it. I certainly get that. Both cancer patients and caregivers face numerous hurdles in moving forward, often without much of a road map as each situation is unto itself.

However (and this is a huuuugee however) at some point we learn, truly learn, that we are not in charge and often you just must trust. And that is when it becomes easier.”

Silence

I was called back by the nurse for my blood draw but before I left, I gave the lady my name and told her about this website and that maybe it can be of help to her and her daughter.

I went back to the cubicle where my blood was drawn with a notion that I probably did not extend much help to the lady. I felt bad. The nurse drew blood and by the time I got back to the lobby to wait for the blood results the lady I met had left.

I hope that her daughter lives to be an old lady and that both daughter and mom get to spend a lot of time with her kid.

“Does it get better?”  I do not know.

This is what I know: I ran into a great mother at the clinic who was concerned. She cares about her daughter tremendously. I imagine that her daughter cares about her son just as much because she has such a good teacher. I know that there is love and caring and kindness and compassion living and breathing all around us – today. And I got a special glimpse of that in the clinic lobby.

And that seems pretty darn good.

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Song Of The Month

Streets Of Bakersfield by Dwight Yoakum/Buck Owens

Classic Country from the Bakersfield Sound of Dwight Yoakum and Buck Owens.

My foot cannot help but start tapping when I hear the song. I love the sound of the accordion that is quite prominent in this song.

As a line in the lyrics says “… just trying to find me something better…” I believe encapsulates some of the thoughts surrounding this month’s post. Relatable to most of us.