In the comments of my last post, as well as via text and email, many of you asked what were very non-rachet questions. (Or rachet questions put in a nice, loving way.)

Since

• not everyone comes back to view comments,
• I’m writing a book about my cancer experience

I wanted to come back and answer them here.

Note: none of the public questions asked of me were rachet. I just like that word.

Here we go.

Is cancer really different for each person?

This question comes from my friend Linda, who I became acquainted with through Twitter, then met in person years later.

Her full question:

I’ve understood that it’s different for each person, even when they have they same cancer. Is that a misconception?

Yes, this is true, in many ways.

Here’s how I came to understand it.

You and I could both catch the same cold virus. Even though we have the same strain we caught the same day in the same place, you might have a better immune system than I do and fight it off, never actually coming down with the common cold.

I might get sick, and have a hard time breathing because I also have asthma. My nieces and nephews could get it from me, but respond differently to actually being sick, even if they feel the same symptoms.

My eldest nephew in the house is just a physically tough kid. Unless he has a fever, he’s still going to be able to play and read, though he’ll probably get an attitude.

His female twin is mentally tough, so will probably go lay down and get quiet, but not cranky. They often get the same cold at the same time, but their sickness often plays out in very different ways.

One will have worse symptoms but recover faster. The other may take longer to get sick but not get AS sick.

So if you take that basic idea and then flip it around to cancer, it goes even further as it gets more complex.

I know people who have CLL, who will probably never need treatment. Some of them are of heartier stock than I, others are older, weaker and have other illnesses.

I know people who have the same type of cancer as I do who are almost completely confined to bed during their treatment, and have known people with harsher, more acute cancers that went to work most days.

Some of those people were in clinical trials of newer immunotherapy drugs than the one I’m on. Others are on harsher traditional treatments that my body can’t take. In each of those groups are people who had a different experience than mine with either the disease itself or their response to treatment.

Cancer’s a very individual disease, as individual as our DNA, although I bet even identical twins experience it differently.

There’s another question Linda asked me that isn’t so specific to me that it would be boring. That’s coming up next. Thanks for being a part of this Linda!

How did you chose your cancer treatment?

Short answer:

I Googled the shit out of everything, read every remotely plausible treatment, holistic or not, looked at the scientific evidence, and argued with my doctor.

Long answer:

Since I have had chronic illnesses before this, some of which doctors didn’t believe existed or were as painful as they are for years, I’m used to being my own health advocate.

Meaning, even though doctors go for years of schooling in their specialities before they actually practice medicine, I don’t trust them implicitly, because they didn’t always listen to me.

Put that together with having several medical professionals in my family, including doctors, who are at the top of their fields, as well as a little training as a pharmacy tech and a father who is a chemist? I’m just smart enough to be dangerous when it comes to medicine.

I called people I knew, people I didn’t know, went to several non-profit organizations, lurked in cancer forums, and cross-referenced the information I found with known issues and side effects of treatments that would make my other conditions worse.

There were three requirements for me.

1. I was getting the immunotherapy drugs, with or without chemo, no matter what.
2. If I came to the educated conclusion that I needed chemotherapy in addition to the immunotherapy, I wanted the mildest effective treatment possible
3. Whatever natural treatment that made sense would be supplemental – I don’t believe that either Western or Eastern medicine has a monopoly on successful healing.

For me the natural component was meeting sleep goals aided with THC & eventually melatonin, getting the safe amount of monitored prescription vitamin mega doses, CBD drops for the pain and intensified hydration via filtered water, and flavored water when I couldn’t take the taste.

Why are people who have cancer sensitive to discussions about their treatment choices?

This needs its own post. But I can start with a few basic things.

Giving a person who is chronically ill or cancer medical advice is dangerous and reckless.

Even the most open person has details about their health you are not privy to, (with the possible exception for if you’ve been married to them).

You don’t know what other illnesses they have.

You don’t know what their body will and won’t tolerate.

You don’t know why they chose their treatment plan.

You don’t know if they can safely stop their treatment plan and shift to something else.

And if you know them only online, or met them a few times, you don’t really know them. You’re acquaintances at best.

It’s not just a matter of being rude.

What if your treatment idea killed them because of an allergy or complication?

It also comes across with the assumption that the person you’re advising is too stupid to make decisions about their own medical health.

Knowing all of that, if you absolutely must share your treatment idea?

Don’t just do it out of the blue in public.

Ask us if we want your advice, and be prepared to shut up if we say “No, you aren’t a doctor or an expert on this subject that I trust. But I do respect your opinion in your field and if I ever need help there, I’ll be happy not just to ask but to hire you and pay in cash“.

Don’t be that person who says “eat lemons” or “keep your body alkaline” or “join this mlm I’m a part of, the vitamin is a cancer cure they don’t want you to know about.”

Even if it’s true, you weren’t asked. And we have a LOT of reasons for not asking you.

People tiptoe around every other aspect of cancer – whether they should visit, if you need money, whether you need help taking care of your kids, what you need help with, asking you what kind of cancer you have.

It’s almost annoying how much people walk on eggshells about every other aspect of chronic illness and cancer.

But it’s a free for all for untrained people with no prior knowledge besides the second hand information from their cousin’s friend’s wife’s dog to tell you what you should be doing with your body.

Um. No.

What chronic illnesses do you have?

Asthma, spinal degenerative disorder and neuralgia. I also have a slightly weakened immune system, other respiratory issues and possibly fibromyalgia, but nailing down all of that was shoved to the side when I found that I had cancer.

Some of the issues I have might be made better by tackling the cancer, or may be because I’ve had the cancer longer than I had symptoms.

How did your chronic illnesses affect your cancer or its treatment?

There’s a complication with the cancer I have that has manifested as a mass in the upper right lobe of my lung. Normally it would get biopsied right away.

But with how sick I was in the beginning, the asthma, how bad my bout of pneumonia was in 2012, it just didn’t seem like the greatest idea to poke a hole in my lungs.

So we decided to tackle the CLL first, and monitor the masses to see if they responded to the chemo.

That’s one effect- treatment procedure.

It also restricted my treatment options. It wasn’t worthwhile to me to make my chronic illnesses much worse to get rid of the cancer if it wasn’t absolutely necessary.

Since one of the illnesses causes chronic pain, I also had to keep reminding all of my doctors that I had these pain issues outside of the bone pain from chemo, or pain in my bone marrow from the cancer.

On the positive side, the boost of the immunotherapy seems to be giving my immune system a boost. During treatment I found out I have mild rheumatoid arthritis, whose symptoms were masked by the nerve pain. Turns out one of the common treatments is the same targeted therapy drug I get with my chemo, so it also put that under control!

So there’s a third- treating things I didn’t know were wrong.

Talk about your silver lining.

Why are you being so public about your cancer?

I’m hoping my answers help someone like me who was looking for a first hand account of the specific cancer I have or Lymphoma in general.

There’s such a silence around cancer.

People are afraid to ask you things, afraid to laugh and joke with you, afraid to visit, afraid period. Or they think they are disturbing you, or that you’ll find their life issues petty.

(Unless of course it’s about unsolicited medical advice. Then some folks are suddenly all mouth for DAYS. Oh that’s right. Another post, later.)

There are also a lot of things I never thought I’d have to deal with because of cancer.

Getting a note from my doctor to give to a charity that will clean your house for you.

Not having the energy to fill out forms to get temporary disability or other nonprofit organization aid that might be for cancer patients.

The process of applying for clinical trials.

How expensive cancer is even if you’re fully covered. (My insurance is amazing. Not even a co-pay. It’s almost scary, like I might get hit with a million dollar bill a year from now. Eeek!)

Only being able to handle two or three clients, even with the team I put together.

It’s a lot.

And I seem to be good at saying things that need to be said that no one else will say, with the added benefit of being the boss, rather than in a position to get fired or taken to task for saying the wrong thing.

Plus, you face your own mortality, and you want to be able to leave something behind. I don’t have kids. And a legacy is more than a business.

My words though, especially made into a book, could help people for the foreseeable future. If anything has to say “Tinu was here” – I’d want it to be my words.