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Voice of Kidney Cancer – Larry Inman

Voice of Kidney Cancer – Larry Inman

What’s the right thing to say to a kidney cancer patient? It’s not always easy to know. Larry Inman shares his advice.

Diagnosed with kidney cancer in June of 2017, I had surgery to remove it in August.  I thought I had a clean slate, but was diagnosed with metastatic cancer in December of that year.  I am blessed beyond merit by the support system I enjoy and am certain I would not get through this without them.  Several friends have expressed uncertainty about what they could/should say as I travel this path, wanting to know what is going on, but not burden me.  They want to encourage but not offend me, and I love them for that concern.  None of us has a playbook on dealing with these matters, so there is no right or wrong answer.  For me personally, here is how I would respond.

First, I don’t enjoy discussing my disease, but I understand it is just part of the gig as a cancer patient.  In addition to everyone’s curiosity, there is the feeling that “if I know more, I can do more”, so I do not begrudge anyone asking about my condition and treatments.

Since none of us really knows what to say, we often default to “God has a Plan”, “Any of us could get hit by a bus tomorrow” or any number of comments we all have heard our entire lives.  I am a Christian and I would not be able to navigate these waters without my faith.  I absolutely believe God has a plan, and yes, we all could get hit by a bus tomorrow.  Again, I understand that this comes from deep concern and not knowing what to say, but it doesn’t convey a personal connection to my current situation.  I am not criticizing anyone using these (I have used them myself), but a more direct, honest response means so much to me.  It’s ok to say this scares the hell out of you; it’s ok to say you don’t understand this and don’t know what to say; it’s ok to joke and kid with me the same way you did before I was diagnosed.

People often aren’t shy about offering suggestions for alternative treatments, protocols, etc….  I realize this comes from a place of love and compassion, and an undeniable urge to help in a situation where we have been somewhat relegated to being helpless.  As such, with few exceptions, I will not be offended.  That said, I have done way more research than I ever hoped to and, in consultation with my doctors, am well versed in the options available for my particular type of cancer.  If I don’t respond enthusiastically to the recent “discovery” or adapt the latest diet cure you send, please understand that I’m not discounting your opinion or not appreciating your concern, but simply tempering my response based on everything I have learned.

Finally, people continually encourage me to be strong.  This is valid, because we cancer patients are asked to do unpleasant things that require strength and stamina to forge ahead.  But we are also human, and just like people who don’t have this cursed disease, we have days when we aren’t strong, when we want to cuss and scream, and ask “Why me?”  We need to be allowed those days as well.

So, the best advice I can give regarding what to say to someone in my position is;

  • Let them know you want them to be strong and you will stand behind them and support them in their decisions as they go through this journey.
  • When they don’t think they can be strong enough, tell them that is OK and you will stand in the void until they are.
  • When they are ready, or are forced, to again exhibit that strength, let them know you will lift them up and stand beside them to ensure they are strong enough to face what lies ahead.

A cancer diagnosis irrevocably changes our lives forever and forces us to accept a “new normal” (not a big fan of that term btw).  I have a very serious disease and I must recognize and deal with that fact, but wherever possible, I would like to maintain as much of my “old normal” as possible.  We are all trying to get through this the best way we know how, so just show your love and express your honest feelings; that is all I could ever ask.

Larry is a stage 4 kidney cancer patient who participated in the RadVax clinical trial – combining Opdivo/Yervoy infusions with radiation. Following the trial, he underwent IL-2 in October of 2018. Today he is responding well to treatment with Inlyta.  He is grateful for the care he has received from his oncologist Dr. Hans Hammers and his team at UTSW.

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