Category: Cancer Posts

Don’t worry, I’m not dying yet

I’ve decided to write a post which I would have titled, “Contemplating Dying”, except I don’t want to panic anyone. No, my cancer has not metastasized (that we’ve been able to tell so far). I’m fine, you’re fine, we’re all fine – but we’re all going to die, some sooner than later, and most of us don’t know how to talk about it.

If you’re one of the majority of people who don’t want to contemplate dying, then skip this post. There’s no huge piece of news that you would miss otherwise.

Why Talk About It?

I’ve been deliberately contemplating death for about a year now, and it’s been an extremely valuable experience for me. No, it has not caused depression. The opposite – all these van trips – even the purchase of our house in Tucson – all these fun things we’ve been doing are directly because I’ve been talking and thinking about death.

Facing the idea of dying, head-on, with courage, has been empowering and freeing and clarifying to an amazing extent. If you’re feeling led to think and talk about death, it may be very useful for you. And if you have a friend or family member who starts talking about death, don’t automatically shut them down. It can be a very valuable process.

Of course, depending on the situation, it may be important to bring in a health professional, particularly if someone is very upset, afraid or despondent. And I do have a therapist. But thinking about death can be natural, normal, and useful, particularly for older people, and people who are impacted by difficult diseases like cancer.

I’m currently considered a “cancer survivor” which of course is true. I have, thus far, survived. Anyone who has ever had cancer, or currently has cancer, is considered a cancer survivor. The term does not mean you’re cured.

I am not yet dead, but my life expectancy right now is a fair amount less than the average boomer, and I’m not even a boomer, I’m Gen-X (the lost generation, the ignored generation sandwiched between the boomers and the millennials). Thus, I’m not really all that old! I feel like I ought to outlive my parents, but it turns out I might not. That does sort of annoy me. But such is life.

Most people don’t want to think about dying. It’s too scary, or sad. But some people, like me, do better when we work things through openly. So I have a therapist and I have a cancer support group, both of which are great. And I have a lot of loving friends and family, but I don’t want to burden them. I figure writing about it in my blog isn’t going to bother anyone, because if you don’t want to think about death, you don’t have to read this post. There will be more vacation pictures very soon, I promise 😉

Now I admit, there are types of thinking about dying that aren’t helpful. For example, sometimes people can get into a worry loop, or an anger loop, where they’re just thinking the same thing over and over and ramping up their emotions for no useful purpose.

But just because someone is talking about a difficult topic, does not mean they are in a negative thinking loop. It may be useful processing. Possible useful thinking may sound something like this: “How have similar situations affected other people? How may my situation affect me? Are there things I could do to mitigate those effects? Is there anything I could be doing differently that would be helpful for me or those around me?”

I had some ongoing trauma for awhile when I was young, and I learned through the many years since then, that I do better when I periodically take a look at it quite directly and learn what I can. The more I know about how others in similar situations are often affected, and the more specifics I learn about how I might have been impacted by that past trauma, the more I can make smart decisions about how to mitigate those potential impacts. For example, did the trauma impact my ability to trust others? Then maybe I can deliberately look at that, and learn to build trust.

If I don’t think about the difficult aspects of life, those experiences will still affect me but in a sneaky sort of underhanded way. If I don’t think about, and learn about, and talk about those events, I won’t understand how the impacts are affecting me and I won’t be able to do anything about the impacts. But if I think and talk about it, I can get smart about how to proactively limit any lingering effects of the original trauma.

Well, the same goes for current or future trauma. If you address it head-on, you might be able to learn to handle it well. If you ignore it – it’s still affecting you whether you like it or not – and you’re not learning how to handle it well.

If a friend or family member brings up a difficult topic like death, it’s perfectly legitimate to ask yourself whether you’re willing to listen. If you don’t want to listen, that’s fine, go ahead and change the topic. You don’t have to be a captive audience to something you don’t want to deal with or think about.

But be clear in your mind – are you are changing the topic because you don’t want to talk about it or because you don’t think someone else should be talking about it? It’s fine if you decide you don’t want to talk or listen or think about a difficult topic. Just don’t assume that your friend or family member shouldn’t be talking about something difficult.

Before you quickly push them in a more positive direction, stop and ask yourself…are you sure it’s wrong for them to be talking about something that seems negative to you? Maybe it’s useful processing time for them. Are you automatically assuming they’re going to end up too sad, and they shouldn’t be thinking that way?

50-50 Chances

After a fair amount of research, I’ve determined that the best data I can find suggests that I have a 50% chance of being cancer-free in 5 years. This data is for patients aged 60-65, and I am just now turning 55, so it isn’t quite right, but it’s as close as I’ve been able to find. It’s highly unlikely that my somewhat younger age is going to help me much. It’s not about my age; it’s all about the type and stage of my cancer.

(credit: https://www.medscape.com/answers/277496-92319/what-is-the-5-year-relapse-free-survival-rate-for-t3-or-t4-colorectal-cancer)

This data is particularly useful because it provides relapse-free data that are based on one’s T and N numbers. The “T” number indicates how advanced the tumor was when it was discovered. The “N” number means how many surrounding lymph nodes showed signs of cancer. Having cancer in even one lymph node is quite risky, because it means the cancer has started to spread.

Most data tables lump all that together, which makes the data nearly useless. It turns out the T and N numbers are absolutely crucial data. Look at the difference between relapse free rates for T3N0 at 79%, compared to T3N1 at 49%, and T3N2 at 15%!

OMG! Outcomes range from almost 80% to a breathtakingly low 15%. It’s hard to believe that most charts lump all of those together, creating an utterly meaningless number somewhere between 15% and 80%!

So all those other statistics I’ve cited in this blog in the past have been nearly meaningless because they haven’t differentiated between the various types of tumor (T) and lymph node (N) conditions. I had no idea it made such a difference!

I’m in the T3N1 category. T3 means the tumor invades through the muscularis propria into the pericolorectal tissues. N1 means the cancer was discovered in one lymph node.

The 5-year relapse-free rate for T3N1 is a middling 49%, which I have taken the liberty to round to 50%. There’s something almost kind of cool about 50% – it’s just so perfectly up in the air. 50-50; it doesn’t lean in either direction. So my mind swings back and forth, back and forth, like a perfect pendulum. Relapse-free or not relapse-free. Either one, equal chances.

So why does this matter? Well, anything else in life, if you had a 50-50 chance of something happening, you’d want to prepare for both options, right? …right? And what does that look like, preparing for a 50% chance of dying in the next few years?

To Treat or Not To Treat

Now you’re probably like, wait, Kristina, even if you do have a 50% chance of relapse over the next 5 years, that doesn’t mean you’re actually going to die of it, does it? Can’t you treat it again?

Well, yes, we could try. Will it do any good? Probably not. The effectiveness of treating metastasized (stage 4) cancer depends on the type of cancer. Some people live a nice long time in stage 4. Some people can even recover from stage 4. It depends a lot on how good the chemotherapy is for that particular type of cancer. Some types of cancers have really good treatments.

Unfortunately the types of chemo available for colon cancer are mostly old styles, that aren’t very targeted, and aren’t nearly as good as some of the newer treatments developed for some other types of cancers. Chemotherapy for colorectal cancer works basically by killing all your new, young, rapidly dividing cells. That’s very damaging to the body and not very targeted to the cancer itself. I think that’s the primary reason chemo doesn’t work as well with colon cancer as it does with some other types of cancer, some of which have more targeted types of chemotherapy available.

In my case, we’re not too worried about the chances of local reoccurrence around the area of the original tumor. The bigger concern is distant metastasis – in my liver, lungs or bones. In that case it would not be a simple tumor which could then be cut out. It would be spread all over, and the only treatment option would be chemo.

By the way, it would still be called colon cancer (or more accurately, colorectal cancer) if it shows up elsewhere such as in my liver or lungs, because it’ll still be the type of cancer that started in my colon. So if it turns up in my lungs, I would still have colorectal cancer, just spread to the lungs.

As I researched my choices and outcomes if I were to have a stage-4 relapse of colon cancer in my liver or lungs or bones, I decided that I’m not going to treat that kind of relapse. Sure, if I have a little stage 1 or 2 tumor somewhere, I’ll get that cut out. But I’ve decided not to do months or years of chemotherapy if it turns out to be metastasized. I deliberately won’t treat the cancer in that situation. And untreated metastasized cancer kills you.

Why wouldn’t I treat it, knowing that it would kill me? Don’t get me wrong – I’m not arguing against chemo. By all means, if you get a cancer diagnosis, do your chemo!

But in my specific case, if the round of chemo I did last summer did not work, and the cancer metastasizes in the next couple of years, more chemo is unlikely to do me much more good. And I’m not going to spend my last year or two on earth pumped full of chemo that can’t cure the cancer. Because that is not the way I want to die.

Last summer I did as much chemo as my doctor felt my body could handle. I couldn’t finish the chemo – I did as much as I could – at the end we were just trying to keep me out of the emergency room (in middle of a pandemic). My lymphocytes were crashing, my mental ability was crashing, I was suicidal, my intestines were not working – I was an utter basket case. We kept trying to lower the dose to a “tolerable” level but my body was crashing. By the way, when you’re talking about chemo, the term “tolerable” doesn’t mean feeling ok. It means the chemo isn’t killing you faster than the cancer is.

I went through all that because it may have made a huge difference; last summer’s chemo may have saved my life. But more chemo is unlikely to succeed.

Therefore, logically, I don’t care about mere survival-to-5-year rates, I care about actual relapse-free rates. Because if I have a reoccurrence within 5 years, I’m not going to treat it and I will die. Merely “surviving” for 5 years isn’t going to do me any good. I need to be cancer-free if I am going to live for awhile. That’s why I’m using 5-year cancer-free data rather than 5-year survival data.

So, am I cancer free? We can’t tell yet. We don’t see it yet – but then, we probably wouldn’t see it yet even if I was heading into stage 4. Colon cancer grows somewhat slowly. On average, if I do still have cancer in me, we would expect it to start showing up on my scans later this year, or sometime next year. Or even a couple of years from now. We don’t see it yet, which is great, but we just don’t know yet.

Living life in case I die

So back to my earlier question, “What does that look like, preparing for a 50% chance of dying in the next few years?”

After a lot of thinking and talking and processing it through, I decided that there isn’t really any bucket-list item that’s going to make me feel ready to die. I don’t have a project I’m desperate to finish, or a place I’ve always wanted to visit, or an activity I’ve always wanted to do.

The primary reason I want to stay alive is because I want to be there for my family. There’s not much that I could do right now, for John or the kids or anyone, that would prepare them for me to be gone. I want to still be around for when things come up later.

Once I realized that, I realized that there’s really very little I can do to prepare to die. So all I’m doing is spending as much time as I can with John and the kids, and trying to support them in small ways for as long as I can. And to live as openly and actively as possible meanwhile.

Through contemplating death, I have become more aware that I am alive.

To send Kristina a comment, email turning51bykristina@gmail.com

ACE Study

In my cancer support group we recently discussed what stressors may have happened in our lives prior to our diagnosis with cancer. It’s generally unknown what specific situations may have caused individual cancers. But we do know that cancerous cells are circulating in all of us, all of the time. It’s up to our immune system to take care of them. Why our immune systems sometimes become overwhelmed and the cancers take hold, we don’t know. But we do know that immune system health is clearly tied to a variety of stressors in life.

One of the stressors we discussed in class is the ACE study. ACE stands for Adverse Childhood Experiences. It turns out, unsurprisingly, that childhood trauma is clearly linked to poor health outcomes, even much later in adult life. The study looked for 3 types of childhood abuse (psychological, physical & sexual) and 4 types of household dysfunction (substance abuse, mental illness, violence and criminal behavior). It then correlated those experiences with subsequent physical and mental health issues in adulthood resulting in statically decreased life expectancies.

Of course as well all know, correlation does not imply causation. Just because something happened first and something else happened second, and they are statistically related, does not mean the first thing caused the second thing. But correlation is by itself important and interesting, even in the absence of causation. Correlation does imply some sort of common risk factor, even if causation is unknown.

There have been numerous ACE-type studies. Here’s the CDC webpage about the original study, https://www.cdc.gov/violenceprevention/aces/about.html

Here’s a link to the large study published in the American Journal of Preventative Medicine in 1998. https://www.ajpmonline.org/action/showPdf?pii=S0749-3797%2898%2900017-8

Here’s some key findings from that study, “More than half of respondents reported at least one, and one-fourth reported ≥ 2 [two or more] categories of childhood exposures. We found a graded relationship between the number of categories of childhood exposure and each of the adult health risk behaviors and diseases that were studied. Persons who had experienced four or more categories of childhood exposure, compared to those who had experienced none, had 4-to 12-fold increased health risks for alcoholism, drug abuse, depression, and suicide attempt; a 2- to 4-fold increase in smoking, poor self-rated health, ≥ 50 [50 or more] sexual intercourse partners, and sexually transmitted disease; and a 1.4- to 1.6-fold increase in physical inactivity and severe obesity. The number of categories of adverse childhood exposures showed a graded relationship to the presence of adult diseases including ischemic heart disease, cancer, chronic lung disease, skeletal fractures, and liver disease. The seven categories of adverse childhood experiences were strongly interrelated and persons with multiple categories of childhood exposure were likely to have multiple health risk factors later in life.“

If you’re curious what your ACE score is, there are lots of places on the internet you can take the survey. And you don’t have to actually submit your answers. In fact, here’s the questions; there’s only 10 of them, you can keep track of your points in your head or on a little scrap of paper. You get one point per question you answer in the affirmative, for a total possible of 10 points.

While you were growing up, during your first 18 years of life:

  • Did a parent or other adult in the household often or very often… Swear at you, insult you, put you down, or humiliate you? …or… Act in a way that made you afraid that you might be physically hurt?
    • Yes
    • No
  • Did a parent or other adult in the household often or very often… Push, grab, slap, or throw something at you? …or… Ever hit you so hard that you had marks or were injured?
    • Yes
    • No
  • Did an adult or person at least 5 years older than you ever… Touch or fondle you or have you touch their body in a sexual way? or Attempt or actually have oral, anal, or vaginal intercourse with you?
    • Yes
    • No
  • Did you often or very often feel that … No one in your family loved you or thought you were important or special? or Your family didn’t look out for each other, feel close to each other, or support each other?
    • Yes
    • No
  • Did you often or very often feel that … You didn’t have enough to eat, had to wear dirty clothes, and had no one to protect you? or Your parents were too drunk or high to take care of you or take you to the doctor if you needed it?
    • Yes
    • No
  • Were your parents ever separated or divorced?
    • Yes
    • No
  • Was your mother or stepmother: Often or very often pushed, grabbed, slapped, or had something thrown at her? or Sometimes, often, or very often kicked, bitten, hit with a fist, or hit with something hard? or Ever repeatedly hit at least a few minutes or threatened with a gun or knife?
    • Yes
    • No
  • Did you live with anyone who was a problem drinker or alcoholic or who used street drugs?
    • Yes
    • No
  • Was a household member depressed or mentally ill, or did a household member attempt suicide?
    • Yes
    • No
  • Did a household member go to prison?
    • Yes
    • No

(Credit: https://byronclinic.com/finding-your-ace-score/)

  • “ACEs are common…nearly two-thirds (64%) of adults have at least one.
  • They cause adult onset of chronic disease, such as cancer and heart disease, as well as mental illness, violence and being a victim of violence.
  • ACEs don’t occur alone….if you have one, there’s an 87% chance that you have two or more.
  • The more ACEs you have, the greater the risk for chronic disease, mental illness, violence and being a victim of violence…People with an ACE score of 6 or higher are at risk of their lifespan being shortened by 20 years.”

Twenty years. I first heard about this study a long time ago, and I’ve sometimes wondered, what if some people with high (poor) scores from childhood managed somehow during early adulthood to get off to a fairy good start as adults anyway? What if they kept their noses clean, managed to stay off of drugs and alcohol, went to college, got a good job, exercised, kept their weight down, never smoked, did all the right things…do the shortened lifespan statistics still apply to that cohort? Maybe to a diminished extent?

To send Kristina a comment, email turning51bykristina@gmail.com

March is for medical appointments

My cancer surgery was at the end of February 2020, so I did all my first annual follow-up screenings in March.

All the results have been good! The blood work shows my white blood cell counts have mostly recovered. They’re on the low end of the “reference range” but still within what would be considered normal, which is an improvement.

My CEA (Carcinoembryonic Antigen) is up slightly from the last couple of tests but still very low, which is good. That one needs to stay low! It is a protein that can be found on some types of cancer cells, including colorectal cancer cells. So it can act as a cancer marker.

Unfortunately no one ever measured my CEA before my surgery (and we didn’t know to ask for it), so we don’t know how high it might have gotten during the time my tumor was active. That would have been interesting to have for comparison. With this marker, we want it to stay below the reference range, and we don’t want to see it steadily going up regardless of where it is in reference to the reference range. The amount it went up recently is very minor and probably not indicative of anything other than natural variation or noise in the test accuracy.

My CT scan was good. All my various liver cysts (which are numerous), all seem to be stable and not growing, so we’re continuing to believe they are benign. There is one large cyst that just showed up new since my last scan in October that is probably an ovarian cyst. Ovarian cysts are very common, usually harmless and usually go away on their own. But I am scheduled for an ultrasound next month just to keep an eye on it. The new cyst is huge! Over 5 centimeters! That could account for my lower back/abdominal ache, although I’m pretty sure that ache showed up before this cyst did, but I don’t remember.

I also did a colonoscopy. This is the first since the surgery that they’ve gone in there and taken a look at everything. It all looked very good. The juncture where they reattached the colon to the rectum looks all healed up well. The tumor was right at that juncture, so they had to remove some rectum as well as some colon. That made my surgery a bit more tricky and my recovery time quite a bit longer than if it had just been a section of colon higher up. Anyway, they found nothing wrong at the juncture, and there were no new polyps to remove either.

I really like my gastroenterologist (colonoscopy doctor) here in Albuquerque; he seems competent and kind, and very straightforward. I’m glad I did my follow-up in Albuquerque with this same doctor. I’m sending the results to my Tucson oncologist, who is a specialist in colorectal cancer and seems more knowledgeable than the oncologist in Albuquerque who is not a specialist. She seemed in over her head when I was reacting badly to the chemotherapy last summer, so I’m glad to have the oncologist in Tucson now.

My gastroenterologist says I won’t need another colonoscopy for 3 years, which is excellent news. I was expecting to have to do one annually for a couple more years. But we’ll see what my oncologist says. I will do it more frequently if my oncologist says I need to. But if he agrees with my gastroenterologist, I’m off the hook for another 3 years!

Quick bit of advice regarding getting a colonoscopy. It involves fasting the day prior, and then drinking laxative powder mixed in 64 oz Gatorade. First of all, if you hate gatorade, you can use a different electrolyte drink. Also don’t bother ordering the fancy recommended “kit” (which includes useless things like jello); just get what you need at the grocery store.

Regarding the timing of your appointment – if you hate fasting, and don’t mind staying up until midnight or later, then schedule your colonoscopy for first thing in the morning. If, on the other hand, you don’t mind fasting and don’t mind being awake from about 3:00 AM – 5:00 AM, and want a slower, more gentle cleanout process, schedule your colonoscopy for around 11 AM. Then you’ll take a “split” dose, half around 5 PM and half around 3 AM, rather than all of it between 5:00 PM and midnight.

Because I don’t stay up late very well, and I am frequently awake around 4:00 AM and then fall asleep again around 6 AM, the late morning scheduling works well for my sleep schedule. Also, the laxative dose is harsh, and the one time I had to do it all at once (surgery prep), I ended up with a migraine and vomiting. But I do fine with the split dose.

For me, being able to take the dose in two halves rather than all at once is definitely worth fasting an extra couple of hours with the later appointment time. I fast for 36 hours every week anyway, so that part wasn’t hard for me. Also you don’t have to do a full fast. You can have jello and broth and hard candy and anything translucent. (If this all sounds impossibly miserable, let me remind you once again that cancer is so, so, so very much worse. Just do it already.)

I’m scheduled for my next blood work and CT in September. So once I get my ultrasound done next month, I should have an appointment-free summer! Knock on wood!

Although actually that’s not true – I really need to find a primary care doctor and a dentist in Tucson. Cancer overshadowed everything, but I still need to keep up with the rest of my health. I’m going to run out of blood pressure meds soon, and my teeth haven’t been cleaned in ages, and I’ve been ignoring a chipped tooth. One of these days I’m going to get a haircut too. What a year it has been! I expect many of us are behind on our routine maintenance, am I right?

To top off a good medical month, I got my second covid shot on March 19, and John got his first shot today!

To send Kristina a comment, email turning51bykristina@gmail.com

Compassion for those who are suffering

I try not to be political on this blog and for me, this isn’t about politics, this is about cancer.

The level of suffering people have to endure as they die of cancer is unbelievable. Until I got cancer I had no idea how awful it was. No idea at all. I didn’t have any comprehension. Now I can’t believe society forces those who are dying of cancer to live through every last horrible painful moment.

When it’s my turn to die, I want to be able to work with my doctors and have some control over the process of when and how I die. Right now in most states the doctors aren’t allowed to help their patients with that. They can give pain medicine, but trust me, at the end, the pain medicine doesn’t work anymore. The doctors have to give you so much that you’re completely knocked out and it still doesn’t work.

I’ve been watching some of my new friends die of cancer and the doctors are so unable to do anything helpful. Not only is it intensely painful, but you can die struggling for breath for days, overwhelmed with fear and helplessness. Can you imagine slowly suffocating to death over days or weeks while your whole body is screaming in pain? Would you force someone to have to go through that?

How can society tell me that I have to go through something like that? I can’t comprehend how cruel and invasive that is. I would never wish such cruelty on the most evil person in the world. So why does society think that I deserve to suffer like that? Why do they think they can decide what I have to go through at the end of my life? Who do they think they are – to think they can force me with their laws to suffer what they cannot even comprehend?

I’m going to die when I’m ready. Believe me, I’ll make it happen. But please help us change the laws so we can legally have our friends and family and doctors at our side helping us, so we don’t have to face this final act alone.

This next excerpt is specifically for those of you in New Mexico, because we have a Senate vote coming up this week. I’m sure the rest of you in other states can find the info you need at https://compassionandchoices.org/.

Here’s for New Mexico:

We expect that Elizabeth Whitefield End-of-Life Options Act (HB 47)—which would authorize medical aid in dying—will be heard by the Senate Judiciary Committee for its final committee vote as soon as this weekend or early next week.

The next stop would be the Senate floor, and then Governor Michelle Lujan Grisham’s desk. The governor has indicated that she will sign the bill, which means these next two votes are absolutely critical.Please email your Senator today. Even if you’ve already reached out, we need you again now to keep pace for passage by the end of session (March 20).

If your lawmakers already support the bill, you’ll see a prompt to thank them. If they haven’t yet, you’ll be asked to urge them to advance the bill. Please consider adding your personal story of support to any and all messages.

Email your Senator in advance of this critical final committee vote. 

Please click the link and fill out your info, it only takes a second. There’s an optional spot for telling your story if you want. In New Mexico they may vote as early as the end of this week, so please do it now.

And then make sure you’re up-to-date on your cancer screenings. I’ve told you before and I’m going to tell you again: getting a colonoscopy done is like a walk in the park, it’s like a happy day in the sunshine, it’s nothing compared to cancer. If you’re afraid of one little brief bout of diarrhea and then a quick trip to the clinic, let me tell you, you have no idea what cancer does to a person. I would do a colonoscopy every single week for the rest of my life to avoid what I went through as a cancer patient. I’d have naked diarrhea in Central Square sooner than going through what I went through last year. Graphic? No, no, not even. Not compared to cancer.

Don’t imagine you’re immune. And as I told you before, I had no warning symptoms. Most of the time you can’t feel or see cancer until it’s really bad. Also, by the way, a colonoscopy isn’t just a screening for cancer. During the procedure they remove any polyps that could eventually become cancer. You don’t want those things left in there. Go and get them taken out.

And help pass some compassionate laws for those of us who are less lucky. Please.

To send Kristina a comment, email turning51bykristina@gmail.com

Progress! And almost grateful for migraines

It’s been very hard for me to believe, emotionally, that my cancer might be gone, because my body is not yet completely well. What I don’t actually know is whether or not I’m still fighting cancer, or if I’m just still recovering from the surgery and chemo.

Because my body is clearly still struggling, I feel like I still have cancer, so I tend to think I still have cancer (even though I don’t consider myself to be typically a pessimistic person). Intellectually, I know there’s a darn good chance that my body will fight off this cancer; has fought off this cancer. But it seems like I can still feel the cancer lurking in me. That makes for a little bit of an awkward conversation when people ask me how I’m doing. I’m a very truthful person, and for me the truth right now is, “We can’t currently detect any cancer (yay!), but I might still have it, and I do still feel like I have it.”

In addition to not feeling as well as I did a few years ago, before I had cancer, I’m still feeling significantly worse than I did a year ago, right before the diagnosis, when I definitely had cancer. How could I not have cancer now, when I feel so much worse than I did last year when I did have cancer?

My type of cancer is slow growing, so it will be awhile of waiting. If my cancer still exists, we have to give it enough time to grow enough before we can see it. My next set of scans and colonoscopy will be this coming March.

Meanwhile, my migraines are coming back, which – although of course I hate migraines – I’m taking as a very good sign. My migraines had started slowly going away about 3 years ago. At the time, I welcomed the change and assumed that I was heading into menopause, because migraines often improve at that point due to changes in hormone levels.

I started getting hot flashes the week after I started chemo. And I wasn’t having migraines anymore. Chemo often brings on menopause, so I figured, well, I’m old enough, so here we are. So many hot flashes! All day and all night, all through chemo. And then they started tapering off, slowly, after I was done with chemo. Had I completed menopause, or what?

Well, according to my bloodwork done in October, it looked like I was actually heading back out of menopause. Seriously? I’m 54 years old. But that’s what my doctor said. Very little sign of menopause at all. Well. Whatever. And – I’m not getting hot flashes anymore.

Now my migraines are coming back. Migraines suck! But here’s why I think it’s a good sign. I’ve always felt like my migraines are connected to my immune system somehow. In fact, I’ve even wondered if they were some sort of autoimmune response, because there are a lot of similarities between my migraines and all the autoimmune things in my family.

I’m not a doctor, and I’m just making stuff up here. But my immune system had been overwhelmed by the cancer and my white blood cell count had been down for a couple of years at least, corresponding with the time that my migraines were less frequent.

I believe that if I start to feel like I felt before I had cancer, then I would be able to convince myself that I don’t have cancer. That would have been at least 3 or more years ago. Back when I had migraines all the time.

Even better, of course, would be to finally reach menopause – with no migraines AND no cancer! I’ll take those hot flashes, any day, all day, all night, whatever – no problem! Hot flashes (although super annoying and disruptive) are far less debilitating than migraines.

Here’s to getting older! I would truly be a new person with no cancer OR migraines!

Meanwhile, here’s pictures from our hike on Friday. I’m grateful to be well enough to hike again!

We didn’t take any photos of me. You’ll just have to believe that I was there too! I guess with the mask and the hat, you can’t even tell this is John. Could be any skinny guy hiking in the desert!

To send Kristina a comment, email turning51bykristina@gmail.com

Purpose in Life

I almost titled this post, “Contemplating Dying” but I didn’t want to panic anyone! I’m doing fine. I seem to be continuing to recover from my cancer treatments and don’t have any solid reason to expect anything other than continued recovery. I just felt this morning like I wanted to write some more about how to best use my life – particularly now that I’ve realize that our time here is very limited. So yes, the idea of impending death. We all face it someday, and as a society we don’t talk very much about it.

This is a follow-up post to an earlier one this July, when I first I started to really think about the concept that I could actually die relatively soon, rather than in some vague distant future. I still believe that I could die relatively soon (because that’s what the data says), but I’m feeling more settled about it.

The data, by the way, in case you missed that post, says that I have somewhere between 20% – 40% chance of not living for more than 5 years. So let’s say – 30%, but who knows? Logically, if there was anything else in my life that had an approximately 1/3 chance of happening (like pregnancy or a change in job or whatever), I would do some planning for it. I wouldn’t count on it happening because 30% is less than the 70% chance that it doesn’t happen. But I certainly wouldn’t ignore a 30% possibility.

I started talking about the big “what if?”. This caused some consternation among my friends and family, because it’s a hard topic that nobody wants to face. But it’s a very relevant topic to me. My question to myself was, “If I were to die in the next few years, is there anything I would have wished I had done differently?”

There were a few answers to that question that came under the category of “settling one’s affairs.” For example, John agreed to give significant assets to our kids if we knew my death was eminent, rather than waiting until we both die and our estate is settled. I also reached out to various people and said some things that I felt needed to be said – sometimes for my own sake, sometimes for theirs.

Other things had to do with shifting from playing a “long game” to a shorter game. John and I had been diligently preparing for an eventual retirement. But since my diagnosis, we’ve made a series of choices (selling rental properties, walking away from my environmental science career, and purchasing a home in Tucson) that have significantly decreased our ability to rapidly save for retirement. Because of those recent choices, we will not be able to retire as well, or as soon. But we decided the next couple of years were important to us, and we didn’t want to spend them working so hard. We wanted to spend them being together.

In July I started talking about bucket list items. At first, I thought this would be an important way to prepare for the potential end of my life. But then I realized I don’t really have any outstanding bucket list items. I realized it doesn’t really matter to me if I ever see Europe or not. Of course I would like to see Europe before I die, but it’s not like if I go to see Europe, then I would somehow magically be ready to die.

I don’t want to die in my mid-fifties, and it’s not because I did or didn’t get a chance to see Europe. It’s because I want to be there for John and the kids a decade from now, two decades from now, three decades from now. And I can’t rush that. I can’t somehow condense all those times I could help and support my friends and family over the next three decades into a one-year or two-year timeframe. There really isn’t a big thing that I could complete now, and then feel content that I’ve done what I’ve wanted to do. Ta-da! Ready to die! (Not.)

All I really want to do right now is the same things that I want to continue to do for the next three decades. Spend more time with John and the kids. Reach out to my friends and family. Support them in small ways; try to make life a little easier for everyone, including myself.

It’s seems like I should end this post with some sort of awe inspiring, metaphorical photo, but I don’t seem to have one that’s current. Here’s the view out my window this morning.

It’s raining! I guess that explains my mood. In the desert, we welcome the rain, but that doesn’t mean I actually like it! Plus, my ever-practical, house-oriented mind is like, “Huh, the water’s not draining off the patio. It looks like we ought to install a French drain.” By the way, the pool water isn’t actually that blue; that’s the plastic cover we have on it until spring.

Oh look, I found a cactus close-up I took yesterday. Not sure if that’s exactly the metaphorical mood I’m going for. Beautiful but covered in spines? Not a huggable cactus!

I’ll leave you to contemplate cactus spines and I’ll write about something more cheerful next time, I promise!

To send Kristina a comment, email turning51bykristina@gmail.com

An excellent book

For Christmas my brother Steven sent me a book about the history of cancer and cancer treatment. It’s called “The Emperor of all Maladies: a biography of cancer,” by Siddhartha Mukherjee. Steven sent it somewhat hesitantly because, as he warned, “It’s not a light, uplifting read.”

Very true. It’s neither light nor uplifting. It’s a brutal read. But it was absolutely and entirely fascinating; I was completely transfixed. I could barely pay attention to our holiday proceedings (such as they were in a pandemic lockdown) because I was so intent on this book.

It’s not just that I have an obvious interest in the topic. The author is fantastic. Now I want to read everything he has ever written. I like science books, but they can be dry. This one is not dry. I’ve never before been spellbound by the details of drug trial phases (for example).

I’m also going to reread this book. It’s accessible, but dense, and my focus is lacking since my chemo treatments. I would not have been able to make sense of this book during my chemo treatments, and I’ve only barely recovered enough to make some sense of it now.

I’ll warn you though – it’s not pretty. Cancer is a killer. And the treatments throughout history – up until and including now – are only sometimes tolerable. By the way, the term “tolerable”, when used in reference to chemotherapy, doesn’t mean what you would typically think the word means, i.e. “not too bad”. Nope. In this context, “tolerable” means the treatment didn’t kill the patient faster than the cancer was expected to kill them.

The trials were considered successful if it held the cancer at bay for one or two months, even if the patients had catastrophic relapses immediately afterwards. The researchers called the trials “successes” if the drug had any sort of measurable impact, never mind the utter misery of the patients who are being pushed as close to death as absolutely possible, in the wild hope to cure them (or others like them, some many years later, after the drug has been refined).

It’s sad how often researchers have thought they were very close to a cure during this past century, always to find cancer one step ahead. Only very recently have researchers managed to develop a few very effective drugs for a few specific types of cancers.

More generalized, older-style chemotherapies do kill cancer and I’m not recommending against them. Unfortunately chemo can cause enormous collateral damage and it’s too often not a cure. The descriptions of surgeons trying to cure breast cancer with surgery only, before chemo was discovered, were equally brutal. They did not understand how metastatic cancer worked, so they would try to take more and more of the upper body (essentially trying to “get it all”), but in the case of metastatic cancer (stage 4), it would never work. You cannot cure metastatic cancer with surgery alone.

However, as horrifying as that all was, I found the book to be more interesting than depressing. And the detailed knowledge the researchers are gaining just this past decade is encouraging. It’s clear that for the drugs to be truly effective, they’re going to have to be very, very specific to the type of cancer and the genetics of the individual patients. That’s a huge task, and it’s a long road ahead, but it’s a path forward.

To send Kristina a comment, email turning51bykristina@gmail.com

Looking forward to the vaccination

We’re looking forward to getting vaccinated! It’s not our turn yet. John might be able to get vaccinated at work – we’re not sure and we don’t know when that would be. We’re both registered at the New Mexico state registration site.

New Mexico is currently in Phase 1B.

I believe I qualify for Phase 1B, since cancer is considered a high-risk condition. However, I haven’t gotten a notification to schedule an appointment yet. I hope it doesn’t go into spam because I’ll never see it there! But I can always check my registration on the New Mexico website, https://cvvaccine.nmhealth.org/my-registration.html

When it’s my turn, “Schedule your Appointment” will no longer show up as Status: Unavailable.

Arizona is not registering everyone at once, just those eligible for the next phase. Arizona is currently administering shots for Phase 1A, and registering for 1B. I would probably qualify for Phase 1C, under “adults of any age with high risk medical conditions”. Registration for 1C isn’t available yet.

I feel lucky that we qualify in two states. I plan to go wherever I can get it fastest! My bets are on New Mexico.

So far I know several people who have gotten the vaccination. Emily and a couple of my friends who are in healthcare have already gotten both doses. Also a few of my friends in New Mexico, who are over 75, have recently gotten their first dose.

I don’t personally know anyone in Arizona who has gotten the vaccination yet, but that’s because I haven’t made very many friends in Arizona yet. I do have a couple of new online friends, but no one that I’ve met in person and done anything with. Still, I’m grateful for my new “Zoom” friends and am looking forward to meeting them in person after we get our vaccination!

To send Kristina a comment, email turning51bykristina@gmail.com

A Letter From Steven

My brother Steven sent me an email this morning, which I’m reposting with his permission. Steven lives with his family in Ann Arbor, Michigan. Here’s what Steven wrote:

There’s a middle-aged homeless man named Jim who hangs out on a busy street corner a half dozen blocks from our house.  I pass him when I bike or walk to work, and he’s been there since early summer or so, so I’ve gotten to know him a bit.  He’s friendly and very polite and seems like a nice guy all around.  One of the first things I noticed about him was how neat and clean he kept his area, always making sure that his trash was picked up and his few possessions were tidily arranged, and how he always made sure not to be in my way when I was coming through on my bike.  Overall he seems very thoughtful and responsible.  

He spends his time panhandling for change or temp work to buy food, coffee and cigarettes. Some nights he would sleep there on the corner in a sleeping bag, although other nights he seemed to be elsewhere (when I asked him once he indicated that a gas station down the street let him sleep on their property.  He may also have other places; certainly I don’t know everything about his life).  As the weather turned rainier in the fall I gave him an old tent we weren’t using to help him stay out of the rain.  I haven’t seen him use it (maybe it’s at his place by the gas station where he has more room?) but he was quite appreciative and became chattier after that.

One day in the early winter as I stopped by and chatted waiting for the light to change he mentioned he had been in the hospital and showed me where his hands had been badly burned during an accident when he was doing an odd job for someone.  How unfortunate, to have to be discharged from the hospital onto a street corner! But he seemed reasonably chipper about it – his hands were healing.  He was even more excited a week or two later to tell me that he had just that day signed some papers and he was supposed to be in an apartment come Dec. 7th – something through the help of the local government or charity, I presume.  I was also quite relieved to hear that, and excited for him.

Unfortunately, mid December I saw him out on the corner again.  He said there had been some sort of delay, and now they weren’t going to have the apartment ready for him until the end of January.  That’s a big difference when it comes to winter around here.  He also told me that day that he was going to be in the hospital again – he was going to have surgery for  advanced stage lung cancer.  Now, maybe this wasn’t a big surprise considering that he had two unlit cigarettes in his mouth as he was telling me this (though he was quick to point out that it ran in the family), but still – homeless and dying of cancer!

In a few weeks his surgery date came and I didn’t see him for a little while, until yesterday when he flagged me down on my bike a block or so away from his corner.  I asked about the surgery and yes, he had had it – showed me with his hands how much of his lung they had removed, and said they got 85% of the cancer. Now he’s on chemo for a few more weeks, and then it will be radiation, and then maybe more chemo, depending.  In the meantime, he’s still homeless, still waiting for that late January apartment.  I asked about side effects of the chemo, and he said they were bad – tired all the time, and sometimes throwing up.  I asked him if he needed anything, and he said as long as he could afford coffee to keep himself warm he was doing fine, so I gave him a 20 and told him I’d pray.

I’ve been thinking about him a lot, even before this last encounter.  I’m sad for him, but also amazed at his resilience and how he manages to have a pretty chipper attitude and just keep on going even through all of this.  I’m also just wondering at the crazy stupidity of a system that treats people for cancer and then discharges them onto the street corner.  Admittedly, he is clearly getting some help and services; one day I saw him loading his few belongings up into a van with some government logo, and of course there is the promise of an apartment, and the medical treatment itself.  But how is it that we as a society can afford an expensive surgery and chemo for him, yet not be able to find a place for him to stay while he recovers?  I don’t know all of his story, and I know from other situations that sometimes the homeless don’t make it easy for themselves to get lasting help or a stable situation.  But he seems to be of right mind, and easygoing and so responsible it’s hard for me to imagine what the hangup would be.

I also don’t know what I can do for him other than being friendly and giving a little change now and then.  Maybe that’s all he needs from me; that’s all he asks for when I inquire.  He does seem to have a warm coat and winter gear.  But I don’t know.  It all seems so crazy to me, and I’ve been thinking about it a lot.

To send Kristina a comment, email turning51bykristina@gmail.com

It seems inadequate

It all seems so inadequate somehow. I’ve done my surgery, I’ve done my chemo, and now I wait. I practice positive image visualization. I fast one day per week. I exorcise my demons and exercise my body. I drink decaffeinated coffee all day long. Somehow these things are supposed to help fight cancer, but they don’t, not really. Cancer – it comes. Cancer – it goes. Sometimes it stays. Nobody knows.

I read about the new, apparently massively more contagious virus mutation and I did what? Nothing. What can we do? I ordered an extra week’s worth of groceries. I felt a bit foolish doing it. Great, now I have two bottles of pear juice instead of one. An extra dozen eggs. An extra box of cereal. It felt privileged. Pointless. Paranoid.

I read about how hard the economic disruptions are for so many people. I try to spread a little bit of money around. I tip the people who bring my groceries. I give a little to local community causes. A little more to a friend in need. But to what end? Our country is crumbling and I am handing five extra bucks to my delivery driver. This solves nothing.

Suddenly there is cancer all around me. Not just in my cancer support groups, where I’d expect it. Suddenly it’s my family, my family’s friends, and my friend’s families. Where did all this cancer come from? I send hopefully-supportive emails. I cannot cure cancer.

Here we are, in our new year now. It feels a lot like our old year. Which was absolutely nothing like the entire other 50 years that lurk like a fading dream in my memory. I have been dreaming, lately, of magic beanstalks. I’m wondering if I should look up that old story and figure out what that’s about. But I do not like old stories; they are creepy and dark.

My beanstalk is bright and colorful and backlit by the sunlight. It grows strong and fast, with many vines looped together in friendship, providing easy footholds. I climb it rapidly and joyously, with boundless energy. I do not want to think about weird old stories of family tragedy and giant ogres.

I try to reach out more – cards, emails, texts, phone appointments, video appointments. I’m not very good at reaching out. But of all the inadequate things, it seems like the most useful at the moment. I reach out – for your sake, for my sake, for all of our sake. It’s not a lot, but probably what we can do right now.

Sorry I do not have any pictures for this post. I would paint my multi-colored magic beanstalk for you, but I don’t know how. I would take a screenshot of my mind.

To send Kristina a comment, email turning51bykristina@gmail.com