I was so very ill when I was diagnosed with cancer in November 2022. At the first hospital, I was diagnosed with colon cancer along with some sort of potential cancer shadow activity in the lower lobes of both lungs. No matter what kind, it had metastasized. Also, there was a great big mass hanging off the side of my pancreas, over my stomach and the top portion of my small intestines. It had flopped over onto renal veins. At that point it was not known if it had both encased veins and was smoothing them or was just smothering them. No matter which one it would end up being, it was inoperable to due its location. Let me tell you that does not make for a wonderful after-breakfast conversation. Just a few days later at the second hospital, I was diagnosed with Non-Hodgkins Large B Cell Lymphoma. A few weeks after that diagnosis, it was further refined to be Non-Hodgkins Large B Cell Lymphoma high grade, double hit, stage 4. Holy Cow! So still cancer, just one with a different flavor.

The cancer my body had generated and also fighting was highly aggressive. I was discharged from the second hospital while waiting for test results. I received a call back from them a day and a half later telling me to come to the hospital that night to begin a round of chemo. CT scans taken at the first hospital and ones taken at the second hospital had been compared and some ancillary test results had come back by then. The cancer had grown and spread quickly between the first and second CT scans which had taken place less than one and half weeks apart. Well hell! Just my luck…

Over the course of six months of inpatient treatment at the hospital one week of chemo followed by roughly 21 days of recovering from the latest round before beginning the next round (one round of R-CHOP followed by five rounds of R-EPOCH-DA as well as 6 rounds of intrathecal injections into my spine with Methotrexate), I had so many questions far too numerous to list here now which would take me off topic. lol

THE MOST important and very first question that popped into my head was “How long do I have to live?” 

I questioned my medical team which consisted of Internal Medicine Doctors who were my gatekeepers while in the hospital, general Oncologists, Hematologists/Oncologists, Gastroenterologists, Obstetrician-Gynecologists, Nurse Practitioners, Oncology Nurses, etc. As a side note I affectionately named them my People Panel. Yes, yes, I did laugh a lot after I coined that descriptive phrase. In fact, I giggled a little each time I said it out loud. lol!

It was a simple question I thought. I wanted to know. I needed to make plans and the answer would fuel how and when I should/could make good solid plans for what needed to be done.

There are so many different ways to ask the question, yet still anticipating the same answer. Just looking for direction no matter the end result. When will cancer kill me? When will I die? Shall I make plans for next month? How about next week? Is that too long a time range to think ahead? Do I have longer or much shorter than that? Will chemo treatment just delay the end? 

Who going thru this mess would not want to know? Unbeknown to me at the time many would rather not know, are too scared to ask, and/or are afraid to know believing a “bad” answer would jinx it for them.

I received no straight answers from any of my People Panel. They were evasive. I was told to not despair. Also was informed that new research and trials were happening all of the time. To not hang my hat on just this treatment because of the other ones which might suit my situation better. So, no clearly defined answer, just knowledge-based conjecture. 

Now, I believe they were wanting to give me hope, afraid I would internalize their less-than-ideal educated guesses they could provide at that time. Possibly hated giving patients that type of information and/or decided to take a slight break with me. Nah, I do not really believe that last one at all. An interesting thought though.

Since I was not getting the type of information I needed from my People Panel, I turned to Dr Google for answers, who by the way was more than willing to help. According to Dr Goggle I could die the next day or live for a while with horrible complications or none at all. So many life expectancy speculations of which all or none could be true. Huh. Five-to-ten-year projections were not looking so good. All were time stamped at least 2-4 years previous to when I began googling. I was looking at old data. Really not helpful Dr Goggle! Trying to find current data was like looking for an invisible needle in a blackhole front-lighted by a supernova hidden behind a blue moon as a snow encrusted asteroid screamed by on its way to its final destination or something like that. You get the mental picture. So again, no clearly defined answer.

As wrong sounding as this is, I am fortunate that cancer happened to me now and not 4 or 5 years ago. The life expectancy was so, so dim. Not many years prior to that it was nonexistent. It was very bleak with little hope offered. There is no way I would have survived the cancer then according to Dr Google who was probably correct in this instance. 

Recently, I sent a message to my main Hematologist/Oncologist via the MyChart App. I did not really believe I would get a straight answer, but asked anyway. Surprisingly, I received an answer back. 

My message to her: First, thank you for your care of treatment. I suspect I wouldn’t be writing this now without your care. I’ve asked you many questions this past year and did not ask the following. What would have happened if I hadn’t received chemo? How long would I have lived? This past year has been a time of reflection for me. Those answers would add to my self-knowledge. I’d appreciate your thoughts. Thanks, Ruthe

About a week later I received a response. It went as follows. Hi Ruthe. Without treatment usually patients do not live past 6 months. Of course, each case is different.

Huh, an answer with a qualifier. Still no simple answer.

Now, given some time and space I have come to believe there is no simple answer to the question “how long do I have to live?”

Even though this was a well-trodden path beaten down by others who had traveled it before me, it was still my own. Cancer is specific to the individual. Exact same cancer diagnosis for two people can and usually will manifest differently in each. The same treatment regime of chemo, radiation, immunotherapy, watch & wait, ex cetera could be given to both yet, each body would and will react differently. So, it follows that each one’s life expectancy would be unique for that individual.

No simple answer there.

I could have rolled dice, flipped a coin, or even used a Magic 8 Ball in place of Dr Google and I wouldn’t have gotten a better answer to my question ‘how long do I have to live?’

The most jarring aspect of a cancer diagnosis is there cannot be a certainty of a future and that is absolutely devastating. No reassurance can be given no matter the kind or type of cancer, the grade be it high or low, the stage of zero thru four, aggressive vs slow growing, whether it is benign or malignant, has stayed in place or has metastasized.

Today I could tell past me who was wondering how long she would live, at least a year and a month and hopefully longer…

Read More about why prognosis is often so uncertain