Coping with Other's Cancer

When you are diagnosed with cancer, you are faced with the World of Oncology. Inside that world lies the answers to your questions and how to keep you alive. As you go through diagnosis and treatment, you get to educate yourself on your illness and what's involved in getting through it.

Oncologists have to go to medical school to learn all this crap. Us patients get the express pass and learn it much faster and more intimately. Doctor's say 'may cause nausea and hair loss'. We know it means we will watch our hair fall out as we shop for a wig and try to keep something in our stomachs. We learn what the truth really is and how to translate their words. A year into treatment, we are pretty educated in 'oncology' and can help others.

My father was diagnosed with cancer in 2013, I got to be his entry into the Great Oncology Wall. He was diagnosed with Waldenstrom's lymphoma, a very indolent type, which is only treated when symptomatic. He was symptomatic so he started chemotherapy which ended up destroying his immune system.

Through all of his treatment my father used me as his source of information. Where to find good information on his disease and its treatment?  (and, no, Wikipedia is not a good source of medical information.) At every proposed test or medical misadventure, he would call me and ask me if I had had it and what was it like.

When his veins were destroyed through chemo, he had to get a port.When  he got his port, his next question was 'when do I get it out?'. The doctors wouldn't say anything. Finally, I said 'after you don't need it for six months, you can ask your doctor about getting it out'. He pondered that and was fine.

In May 2017 he was diagnosed with pancreatic cancer. He asked me to come to all his appointments so I could 'translate'. I would bring my list of questions that I thought we needed answers for. He didn't always agree with me but I still go the answers. I thought we should ask the oncologist 'what are the chances that this chemo protocol will work?' when he insisted there must be more chemo options and wanted to continue to try treatment. He didn't like negative answers to that.

He also cracked jokes all the time with the nurses and doctors. He criticized my wheelchair driving abilities but I complained he was the one who taught me to drive. He also would introduce me to his doctors as his daughter with more ailments.

Last fall he stopped asking me to go to his oncology appointments because I agreed more with the oncologist than with him about continuing treatment. But after three CT scans showing continued tumor growth (he would call it 'they are going forth and multiplying'), he finally asked me to take him to his fourth CT scan and following oncology appointment again. He was starting to feel weak and confessed that because of the number of meds he had to take as he was allergic to the CT contrast he wasn't supposed to drive himself. (He had selective hearing for medical advice he didn't like.)

Before his appointment, I had a discussion with him about what the oncologist might say about what the CT scan might find. We talked about quality of life and maybe it might be better without the dragging down of chemo might be better. Because I asked my pushy questions, and agreed with the oncologist that there really weren't more options for him, he agreed to stop chemo. It was a whirlwind and I think he was pleased.  It meant less doctor appointments which were beginning to tire him.

But it also meant that we moved on to his next stage in his cancer journey, when the hospice nurses showed up and could answer many more questions honestly than I was able. But he kept his sense of humor to the end.

For the past year I have not written about my father's cancer. It wasn't my story to tell. But now I am able to share and write through some of my stress. I will continue to write to help me cope better.

A cancer database

The proverbial 'they' always talk about cancer patients and success stories either in generalities full of percentages with lots of big words - 37% of patients with diagnosis A tend to show positive responses to treatment protocol Q while 82% show positive responses to protocol ZB37. Then you hear stories about individuals who had this outcome or that one.

But what if it could all be consolidated into a big pie where it could be dissected and analyzed? Then the data could be  better understand and prognoses could be better predicted. Patients might even handle treatment better. Who would have thunk? Individualized medicine could be better understood and more wide spread. Cancer research will become easier and faster.

Public Health England is going to do exactly that - develop a huge public cancer database. I think this is a great idea. Statistical analysis aside (as well as statistical paralysis) it would provide so much information about existing patients that the benefits are unimaginable.

Now England is a much smaller country than the US with approximately 350,000 new tumors diagnosed each year so its is more manageable. In the US, the number is 1.6 million so it would be that much more difficult.

Thyroid cancer facts

The Huffington Post brings us Thyroid  Cancer: The Five Things You Really Need to Know. One little factoid jumps out: UP 274 percent since 1997. That would make it the fastest growing cancer in the country. But it affects a relatively insignificant number of people - around 60,000 this year - so it doesn't get a lot of attention.

Number one to know is it is not the good cancer. There is no good cancer. The term is derogatory and misleading.


Number two is that taking a pill every day is not that easy. You need to replace the vital thyroid hormone but if they give you too much you will be hyper and if they give you too little you will be hypo - too much or too little does not do the body good. And the doctors try to keep your levels low to prevent that lovely possibility of recurrence.

Number three is there is no new normal. I hate that term. After both cancers I was supposed to reach a new normal. If I was nineteen at my first normal and now I am on my third normal. What is normal for me?

Number four is that oh so subtle scar across the front of your neck. It fades with time but it never goes away. Stop staring!

Finally, you are not alone with thyroid cancer, you just have to look a little further to find support because it is still rare. I can count on my fingers the number of people I know with thyroid cancer. This includes the pharmacist at the local Walgreens, Ria the painter, Yumi from Japan, Lesley in Texas, the other woman I cant remember her name who also had both breast and thyroid cancer, and a few others online. (I know I am forgetting someone but after cancer twice the brain is the first to go.) But I probably know hundreds of women with breast cancer - literally.

So if you know someone with thyroid cancer send them to thyca.org or bitemecancer.org.