Ironically, this teeny tiny tumor has been much more worrisome than having a dozen tumors hiding in my chest. A second bout of cancer within two years raises the stakes quite a bit, and we can't just ignore it because it's small in comparison to the larger tumors found upon my initial diagnosis.

Immunotherapy was attempted this summer in an effort to train my body to rid it of cancer, but instead, my body began retaliating with rashes, painful neuropathy, sleepless nights for an entire month, and pain across my chest, mimicking heart trouble. After four treatments, the last two were scrapped due to toxicity and I was sent off to Seattle this week for better and more treatment options. 

I hate to say it was all a waste, however. The initial tumor size of 2.0 was reduced in size, but more importantly, in strength. When a PET scan detects a tumor, it emits an SUV rating that tells the practitioner if the tumor is cancerous or not. An SUV of 1 is acceptable, but 5 is definitely cancer. In addition, a blood marker (LDH) also detects cancer. 

My LDH numbers have been consistently under 200 (normal) with a few above (also considered normal post-treatment). When my initial LDH from 2 years ago shot up to 333, I was in full-blown cancer, and when the teeny tiny tumor was found in May of this year, my LDH was a very normal 188.

Three months and two treatments later, however, my LDH was 282, suggesting that the treatment wasn't working and my cancer was growing. Fortunately, a CT scan showed that the tumor was stable, and another two months and two treatments later (last week), my LDH was back down to a fairly normal 215. A PET scan on October 22nd revealed an SUV of 4.1, which meant that the tumor was not as strong as it had been previously; happily, both numbers suggested a good improvement with immunotherapy so I was expecting good news at my Seattle appointment. 

Something like, "Hey, since your tumor is so small, let's just watch it and wait." Or, "We can nip it in the bud with a few zaps of proton therapy." In retrospect, I'm a bit embarrassed that as a nurse, I wasn't more tuned-in to the serious nature of being sent to Seattle. Or even that a cancer recurrence was never good news. I have been so encouragingly focused on the "teeny tiny-ness" of this tumor that I have failed to realize that once Immunotherapy was off the table, I still had cancer in my body that wasn't going away. 

(Oh, denial is a wonderful thing!).

My point was proven when I met the cancer team in Seattle three days ago. Instead of hearing anything encouraging, I was informed for the first time that because cancer reappeared in an area of my chest that had already been irradiated, it meant that it was an aggressive form of Non-Hodgkin's Lymphoma and must be dealt with aggressively--and soon. 

Needless to say, I've been a bit shell-shocked for the past few days. 

I was presented with two options for treatment, both that were way more serious than what I'd been expecting: I could choose 6 more rounds of chemo followed by a stem cell transplant; or join a clinical trial. 

I nearly vomited at the mention of chemo, so I immediately focused on the trial that begins with a pill and ends with a serious and complicated procedure. 

So what does this mean? Basically, I can choose months of chemo to wipe out the tumor, followed by reintroducing "clean" stem cells back into my body to keep cancer at bay; or, I can participate in a clinical trial that is studying the efficacy of reducing/easing side effects with the administration of a pill before a treatment that's similar to stem cell transplant (CAR-T).

Specifically, T cells will be harvested out of my blood and sent to a lab to be re-engineered with receptors that rid the body of cancer. These are called CARs. Three weeks later, those doctored T cells will be put back into my body.

I asked my new oncologist why anyone would choose chemo over a pill, and she said it is standard of care to do the first option, and the study just became available a few months ago, which is super lucky for me! Had I been sent to Seattle earlier, instead of doing Immunotherapy, I may not have had the option to join the study. I was also told that if I choose option #1 and it fails, the next option would be CAR-T anyway.

Anyone who knows me well knows that I'd rather cut right to the chase and get this damn thing over with, so I have chosen option #2. 

And if all goes well, CAR-T is supposed to be a life-long cure as my re-engineered cells should remember how to detect and eliminate cancer cells forever. 

This is precisely why I love science!
 
I was freaked out and overwhelmed, but the docs were fabulous. They were already well-versed on my case since I was discussed at their rounds the day before my appointment.

While at their meeting, the MD who wrote the study (!), told my oncologist: "If Katie has any questions tomorrow, call me." When I told her I had plenty of questions, she said, "Okay, I'll go call him," and 15 mins later he walked in and spoke with me at length about what to expect. I already feel coddled by a full team of professionals who work in the second highest rated cancer center in the world. 

But after leaving Seattle with a packet of papers in hand, I sobbed pretty much non-stop for two days.

It's odd to be feeling this afraid since chemotherapy, radiation, and immunotherapy never really freaked me out. My BFF was often worried that I went through three treatments so non-plussed; perhaps after 2.5 years of dealing with cancer, I'm finally feeling the enormity of ALL of this. 

In addition to the possible horrifying side effects of CAR-T, I also have to live in Seattle for two months to be near their facilities. They don't want me at home (1.5 hours away) during the treatment in case I need the ER; they want me near a hospital that's equipped to handle any side effects/emergencies.

​This was when I first broke down crying in the doctor's office. Having to relocate for two months to a big city while going through something scary overwhelmed me. But the good news is, because my daughter lives within 20 of their facilities, I was told I could bunk with her (phew!). And my brother-in-law advised me to treat this time away from home as a vacation and to book a hotel, a day spa and anything that will make the stay easier. Wise man. 

Giving into my fear and letting go has helped me work through the process of acceptance. I still feel freaked out at the complexity of the therapy and the possible complications, but I also feel more ready to roll. As a nurse, I have spent the past few days researching the procedure and I joined a Facebook group that's been very positive and helpful. 

I was told not to expect the actual CAR-T for another two months while details get hammered out and I get prepped. I will meet with my new oncologist and CAR-T doctor next week, and I will begin the pill shortly thereafter. I'm not sure of the minute details, but after a few weeks on the pill, I will be given 1-2 doses (not sure) of chemo out-patient to reduce the cancer, making space for CAR-T cells to survive and expand. I asked if I'd lose my hair, and was told "It may thin a bit." No biggie. 

When the T cells come back from being re-engineered, I will be hospitalized for at least one week while the cells are returned to my body and possible side effects are monitored/managed.

Most people weather the procedure well, with few or no side effects, but if the worst happens, it resembles what happens with COVID--a cytokine storm which can shut down my system. Super scary stuff, but the staff is also highly trained to watch for symptoms and can treat them right away--hence the week-long hospital stay. (I'm not sure I read the fine print with chemo and its side effects because I was never worried about them. Now I'm not sure it pays to know so much!). 

I was also told that I'm in the best possible position, medically, to be doing this now: I'm young, in good shape/health (other than cancer!), can handle any side effects better, and the tumor is super small.

​All good news.

But still...

I am feeling the best I've felt since July when Immunotherapy began. It not only hit me with hard side effects that eventually subsided and disappeared once treatment ended, but I JUST got my precious energy back exactly one week ago today. And with no symptoms of cancer, no pain, and tons of energy again, I'm being asked to submit to another procedure that will turn all of that around, and may possibly be life-threatening as well.

It just feels so...wrong. 

But what I'm finding out through others' experiences is that CAR-T is often a last resort after several failed treatments and a growing cancer load. So perhaps that's the approach for me as well. My cancer load may be teeny-tiny, but I have essentially failed three types of treatment. Even though I was in remission for 20 months after chemotherapy and radiation, cancer still resurfaced. 

Oh yeah, that. 

It's an interesting phenomenon having a ticking time bomb in my chest. It reminds me that everything I do can influence the outcome of this cancer--from the things I put into my body, to my attitude, to the choices I make about treatments, and how I view my future in light of a cancer recurrence. 

It's sobering. But it's also life-affirming. 

Because of this on-going experience, I have learned what matters most in my life and it always comes down to the simple things: a wide group of people who support me unconditionally, time with my children and grand-children, delicious food and drink, quiet time, a beautiful sunset, laughter (lots of it!), a deep relationship with God, and my own happiness--just to name a few of the millions of miracles that grace my life. 

And ironically, I do feel happy. Yes, I am still nervous, but as I educate myself I also feel empowered; as I share my news with family and friends, I feel supported and loved; and as I continue to live my days as if they're my last, I feel complete.

​In my grief, there is still plenty of beauty. 

We are never guaranteed more than today, but we do have control over how we face what shows up. It is because of these challenging moments that I choose to rise above them with a positive outlook and stare them down with confidence as I boldly declare: 

Not today, cancer. Not today!

Typically I am blessed with a breather from Immunotherapy side effects for about a week before the subsequent treatment begins, but nothing since Treatment #3 on August 27th has been typical. 

I have been keeping a record of my daily side effects so that I can compare them to each treatment, and to predict when a side effect has gone into hiding. After the first treatment, for example, it was fatigue and a slight rash that took up much of my time and attention. After the next treatment, the fatigue was more heightened, and so was the rash, but after #3, both went into submission fairly quickly. It was the neuropathy in my fingertips and hands, along with the accompanying pain that became my constant nemesis after my third treatment. 

Numb fingers and hands made brushing my teeth, blog-writing, and making tea challenging, but when the pain started to accompany the numbness, I was pretty much incapacitated because the pain tended to travel up both arm muscles, into my biceps, before finally resting deep into my armpits. I felt like I'd been beaten up from the inside out. 

Sometimes, it didn't stop there, but would inch its way across my chest and settle where my heart lay beating. I often wondered if I could be having a heart attack but would never know it since my heart seizes up into a fist, unable to unclench itself--no matter what medication I take, or stretch I do. 

The symptoms became worrisome enough a week before treatment #4 on September 17th that my oncologist wanted to get another CT scan before continuing with anymore infusions. Because my lymphoma began in the space between my lungs (mediastinum) and new pain was radiating there, it was prudent to get the area scanned in case lymphoma was going rogue on its own, proliferating out of control.

Immunotherapy is supposed to be a miracle cure when it works, but when it doesn't, it's pretty much a disaster as it tends to teach the body to turn against itself instead of attack any cancer. With an elevated LDH and new pain, this was a concern for all of us. 

Fortunately, the CT showed that the drugs are doing their job because my 2.0 cm tumor is now a mere 6mm in size, a 75% reduction!

But sadly, that good news weeks ago was overshadowed by my concern over the unpredictable and unrelenting pain that continued to cause sleepless nights, many tears, and many more days spent recovering on the couch. But with a new anti-inflammatory prescribed on my last appointment, it seemed to do the trick of alleviating the body aches. 

Just not for long. 

The pain, sleepless nights, eating Vicodin like candy, and too many days feeling out of commission continued. But when I arrived at my appointment last Thursday, ready for my fifth treatment, I was surprised when my oncologist put a halt on any further infusions. My relentless, on-going side effects revealed too much toxicity and he wasn't willing to take a chance at losing more of the function in my hands or arms. 

I felt stunned, relieved, grateful and overwhelmingly sad. Would I now have to start over? 

The plan is to get another PET scan that will give new oncologists in Seattle valuable information about how to treat me going forward. 

But just a few days after NOT receiving treatment last week, dare I say I may be feeling better? 

I'm certainly sleeping better, at least for longer stretches of time, and my Vicodin use has been cut at least in half. The pain continues in both hands and arms, along with pain/tingling/numbness in my fingertips, but the ache has suddenly disappeared from across my chest. Fatigue continues, but I feel my ol' perky self returning. 

​All good news, indeed. 

Despite my adamant reluctance to go to Seattle for further treatment, I do recognize that I am being fervently watched over and taken care of, and perhaps, Seattle is just the next right move in the on-going web of my care.

After all, everything that has been put into place (or taken away) thus far has worked in my favor. 

Trust has become my new meditation and gratitude has become my new prayer.

Last Thursday was my third Immunotherapy session. The days leading up to it were odd, only in that my side effects kept playing tricks on me. I had already gotten used to the fact that a few days after treatment, I would begin to feel a bit energy-deplete, then at one week, a rash would most likely appear for two solid weeks before retreating. And my energy would be fully restored after just a few days. Easy.

But it didn't happen that way this last time, not entirely. 

Because I had fasted for the four days surrounding treatment #2, I believe I averted any nausea or headaches. Then as predicted, a rash began to appear a few days early, on day #5. What began as small, pink, mosquito-like dots on the undersides of both arms, became red, raised, and itchy over the next few days. Definitely worse than the last time, but still, predictable. 

Once the rash disappeared two weeks later, however, I did not expect the achiness that beat through my arm muscles just where the rash had been. My thighs began to feel weak, too--like jelly--and my left arm felt heavy, like lead. The ache would eventually hit my heart area--causing a bit of paranoia that perhaps my heart was acting up--and migrate just below my ribs. My heating pad once again became my side-kick. The neuropathy in my fingertips was definitely worsening, making writing a bigger challenge than before. 

But this didn't happen every day, nor with any sense of predictability. I have had great days full of energy, stamina, and ease--then have crashed the next, deplete of energy and fresh out of fucks. 

Then I began to have sleep issues for the first time in my life. My body felt jacked-up on steroids or caffeine, neither of which I take. When I explained all of this to my oncologist, he reminded me that Immunotherapy does "jack up" my immune system in an effort to wake it up and teach it how to find and kill cancer cells. 

Oh, yeah. That. 

Lorazepam is now my new nighttime security blanket as it eases my jittery body enough to be able to fall into a deep sleep. 

The beauty of Immunotherapy is that it works long after the drug has left my body. Its intent is to be a wing-man, of sorts, to my immune system, showing it how to destroy foreign invaders. 

So of course the side effects would be odd and annoyingly unpredictable. And the flu-like symptoms are on the list of side effects, just like the rash, so that offers me comfort knowing nothing out of the unusual is happening. 

My oncologist also reminded me that people who endure side effects fare better on these treatments than people who breeze through them. 

Well now I feel silly complaining about them. Bring 'em on!

I have just one more treatment in 3 weeks before another scan will be done and I found out yesterday what it will mean. 

If the CT scan shows anything, a PET scan will be done because it shows tumors in greater detail. If that shows that the tumor is responding to treatment, then Immunotherapy will continue through the end of this year, possibly up to a year, total. Even if the tumor is gone (yes!), Immunotherapy maintenance will still continue for a time. 

I can handle either of those scenarios. 

If, however, the scans show that this teeny, tiny tumor hasn't responded to Immunotherapy, or heaven forbid, has worsened, I will be shuffled off to Seattle to the Mother of all Cancer Centers.

And that, my friends, unhinges me. Because that's when they will most likely pull out the big guns called Stem Cell Transplant. If my immune system cannot handle ridding my body of a tiny foreign invader, it will have to be replaced, which essentially means obliterating my immunity with high doses of chemotherapy, then introducing healthy new blood-forming stem cells to restore my system. 

Definitely good news. 

But I'm already out of work, not directly because of cancer, but because of the risk of COVID-19 and my immunocompromised status. I have an anticipated return date at the end of September, but it also depends on the CT/PET scan results and the current status of COVID infections in my county.

If a transplant is indicated, I will be out of work another 3-6 months, most likely in a hospital bed far from home. The transplant is not the problem since it's a relatively easy procedure that takes only a few hours. The problem is shutting down my immunity with high doses of chemo in preparation for the transplant. I will be back to Square one like two years ago, but worse. Not only will my health be further compromised, but so will my livelihood, my relationships with my kids and friends, and my ability to feel normal again. 

I am not yet ready for that. 

But before I get trapped going down that scary bunny trail, I have to remind myself that so far, the events around my current treatments are going well: I feel mostly better than I did on chemotherapy, albeit a little less predictable; my bills are getting paid; the tumor was teeny tiny to begin with; my body seems to be working with the therapy by experiencing side effects; and no one, not even my oncologist, is heading down that road--at least not now. 

And if I were to be honest, the scenario I am in right now scared me just a few months ago. I thought for sure my life would be upended--and it has been--but I've also been completely taken care of and the respite has been an added bonus. 

As I sit here writing from my kitchen table that overlooks the water on this gorgeous sunny day, I feel relaxed and calm (for now). I am reminded that my life has always been taken care of--all of it--and whatever happens in just one month will be revealed in time. The outcome has always been much better than my fearful anticipation of it. 

One day at a time is all we are promised, so I am trying to make each of them count. 

Cancer this second time around has been very different than two years ago. 

I suppose I can blame COVID-19 for that since I'm doing this all alone in the midst of a pandemic. I cannot have anyone with me at the Chemo Bar, unlike last time when I had a gaggle of friends and family showing up each time; no one is showing up with meals or to visit; I am no longer working as a nurse since the risk of COVID is now too high for my new immunocompromised status; I seldom go outside, except for my daily walks; I make a weekly errand run, dashing in and out of stores quickly while masked-up; and the only interactions I have with others is limited, at best.  

But you know what? lt's all okay. 

I also haven't lost my hair; the every-21-day treatments have already become easier; and the down-time at home has been a blessing in disguise. Not only have I started mini-renovations in my home, but I have also had ample time to slow down, rest, relax, and turn inward. 

I still get calls from work almost daily, and while I feel needed and missed, I do not miss the chaos of the work environment right now. I am grateful that I am stuck at home in semi-quarantine because I have had time to reevaluate what's most important to me. And for today, that's healing completely so that I don't have yet another relapse in another few months or years (I've discovered that lymphoma tends to act more like a chronic autoimmune disease than cancer, which means it also has a tendency to recur). 

My new oncology Naturopath reminded me a few weeks ago that once cancer has gone into remission, most survivors return to their old habits, behaviors, and diets and sure enough, that's exactly what I'd done as well. 

This time, I have to consider that maybe some of those habits, thinking patterns, routines, stressors, and poor eating habits contributed to a relapse. Not that it's an attempt to blame myself for this relapse, but a reason to look at this differently. 

And this quote came to mind: 

I HAD TO MAKE YOU UNCOMFORTABLE, OTHERWISE YOU NEVER WOULD'VE MOVED ~ The Universe

Perhaps it's time to make a move; a bolder one, stronger one, more convicted one. And perhaps this cancer relapse is paving the way there. 

Early on in this relapse, I went for my nightly walk and decided to ask God a few questions. I often use this as my meditation time since I'm able to listen without feeling distracted. And since I believe that every life lesson comes into our lives FOR our own growth, I always approach God in a quizzical manner, asking questions out of curiosity. 

"What is this here for, again?" I started.
"For another reminder of who you are. You need to live life FULLY." 

This seems to be my ongoing message. Apparently, I don't fully embody who I am in the big sense. Like, WHO I AM, a child of God. I have an on-going conversation with God, but when the shit hits the fan, do I really believe that He wants what's best for me? 

I'd like to think so, but I often default to "Yeah, but is He REALLY here for me?" 

It's not like I haven't had ample reminders about my place in the universe, with His steady supply of support and guidance. I am a magnet for manifestations and magic, but when put to the test, do I believe He'll come through AGAIN? 

Not necessarily. 

So as I pondered the answer on my walk, I decided to ask Rupert the same question. If you recall from my stint of cancer last time, I believe that when we are going through a crisis of any kind, speaking to the body part or disease in question is a fascinating way to receive interesting/critical/mind-blowing answers.

Rupert is what the massive spread of a dozen tumors within my chest cavity called itself. He was a Waldo-like character who didn't seem like he could hurt a flea, let alone cause major damage in my body. But from the beginning, his mission was only to heal me. And the day my lymphoma died, apparently so did Rupert. 

Because when I tried to summon him this time, no one answered. But a few minutes later, "Penelope" stepped forward. 

When I say "stepped forward," I mean: "she" (I feel a female presence) announced herself in my thoughts by saying her name. 

And as clear as Rupert had been two years ago, I felt Penelope just as distinctly, though she has no body. She feels like a light, ethereal, pink cloud. She is soft-spoken, kind, sheepish--almost fairy-like. When I posed the same question, her answer sounded familiar. 

"I'm not here to harm you in any way, but to heal you. I'm small this time because I'm simply here to remind you of WHO YOU ARE."  

Damn, there it was again. 

So I've been trying, as best I can, to remember during this time of quiet solitude. I have mostly gone silent during my days at home, listening to God, Penelope, and my own small voice through daily practices of meditation, walking, and writing.

I've turned inward more and more, unwilling to rely so much on the opinions and advice from others around me. They always mean well, but I must be willing and able to listen to my own heart as I embrace this new experience of relapse.

I am eager to discover what this one tiny tumor is trying to teach me as it leads me deeper into healing.  

I am the Nurse at an Assisted Living facility so when I was diagnosed with a relapse of cancer recently, I had to stop working because of the threat of COVID. It's no secret that our establishment is the most vulnerable of all populations, and I am now immuno-compromised again. Despite working through chemotherapy and radiation last time, I have to sit this one out. 

I moved my 96-year-old mother into my facility from the east coast a year ago. That was after having had cancer, but I had withheld the information from her because I'd been informed by my family that her dementia was bad enough that she wouldn't remember, anyway. Well, when she moved here, I found no signs of dementia, just advanced-age memory loss issues; definitely not the same thing.

When she was eventually told about my cancer, she was flippin' mad and I didn't blame her. After all, doesn't every mother want to be there for her child in time of need? I had stolen that away from her. 

So when I visited her a few weekends ago, is was to let her know why I wasn't at work anymore. 

Let me tell you: informing a mother that her 8th and youngest child has a cancer recurrence is brutal. Not only did her husband (my father) die of the same type of cancer thirty years ago, but there is a possibility that I may, too. Not anytime soon, I hope, but this could eventually take me. 

"How come you're so strong about it?" she asked through sobs.
"Because I've been here before, I don't feel sick, and I am good at accepting life on life's terms." 

It's a motto I adopted from 12-step programs when I stepped into the rooms of Al-Anon over two decades ago. My marriage to an addict got me there, but what saved my sanity was learning how to stop fighting the craziness of living with a man who couldn't stop his addiction--not even for me or our children.

When I stopped resisting the inevitable--that he wasn't going to change, but would instead continue dragging us down the slippery slope of addiction with him--I got honest. I got help, and I took action.

It took a while, but I eventually left him and moved on. And in time, I healed the fallout of our destructive marriage and moved into a bigger and better life. 

"The truth will set you free" is not only real, but it works. The hardest part is surrendering to the reality of the event, whatever that is: A looming divorce; a child on drugs; a job loss; a miscarriage; a bankruptcy. 

Or cancer. 

I still fight circumstances on occasion, but for really big issues that are entirely out of my control, I know better.

I have learned to cave, to surrender, and to accept whatever has landed into my lap. 

But no, I wasn't always good at this. I had to learn it by landing on my face time and time again. It was through those hard knocks that I was properly prepared (and ready) for cancer's arrival. 

But what other choice do I have but to accept this?

Sure, I can holler and scream and cry, but what good would that do? It won't make the cancer go away; in fact, it may even cause it to proliferate. And if I focused all of my attention on resisting my diagnosis by staying in denial or anger, I wouldn't have any energy or motivation left to seek out alternative treatments, or to heal. 

But a positive attitude, I know, works like magic. Not only for cancer, but for all of life's unexpected zingers. 

I believe it contributed to my quick healing last time, with no significant health problems during the 7-months between diagnosis through chemotherapy and radiation. I was still able to work; I regained my stamina and energy after each chemo; radiation only gave me a short-term sore throat; and I've been feeling great since it all ended in November 2018. 

Now that it's back, I don't ask "why?" because my only focus is to get better. And that means getting honest about my life and how I can improve my chances of healing by paying attention to my diet, exercise, attitude, and treatment options. 

But my mother insists on understanding the "why?" Perhaps she is still mourning the loss of her husband of 45 years, or worrying that her youngest may succumb to this as well. Perhaps understanding the reasons why cancer has shown up again in her child while she is ready to leave the planet at 96, may help her sort out her own pain about the past and the present. 

It's how she and I are fundamentally different, my mother and I. I care about the "Why?" only so I can better  understand what I may be able to do to avoid a prolonged relapse, and to ensure a better outcome. 

I spent over an hour with my mother as she cried and vented. I was grateful that I had on sunglasses and a mask since behind them I was a snotty mess. But there were also moments of levity. Through tears she said, "I wish it was me and not you," to which I replied, "I do, too." It not only took her by surprise, but also made us both laugh out loud. 

"Why this/Why now/Why me?" are mere distractions on my road to recovery. And I've never been one to play the victim card. 

I believe it's why I've made it through sex abuse, two miscarriages, a marriage to an addict, divorce, and cancer. 

I'd also like to think that being a bad-ass is my super power. 

June 2, 2019

You guys, I've stumbled upon a game-changer!

No, it's not new information, but I'm finally taking it to heart. 

A year ago when I was diagnosed, one of my first thoughts was about a woman named Kris Carr. I'd seen on Oprah many years ago as she had (and still has) an incurable cancer that was found while she was in her early 30's. The approach for her treatment was to "sit and wait" since there was no treatment, and several years later, she is still happily alive with a tumor that hasn't grown. 

I remembered her because she was telling the millions of viewers that she does a daily dance in her kitchen, and her tumor has taught her to enjoy life. She has since made millions with her book Crazy, Sexy Cancer that has been a phenomenal medical movement. 

Since I was determined to make something good out of my diagnosis, I immediately ordered her how-to book, along with her Crazy, Sexy Diet cookbook. I've since given away the how-to book since I was already doing all of those self-help recommendations and it offered nothing new. I took this as good news since I was already halfway there. 

But I kept the cookbook, read through it, and promptly tossed it aside as treatments began and continued throughout last summer.

I knew sugar was a big no-no with cancer, but for some odd reason, I wasn't worrying about it. I happily chowed down anything with sugar, including my almost-daily chai lattes. 

Fast forward to several months after treatment when I was gifted a cruise by my sister. 

It wasn't cancer that snapped me out of my fog of realizing how bad sugar is.

No, no, no. It  was vanity. 

Or more specifically, it was my passport picture. 

I was shocked to see an old, tired, chubby woman looking back at me. 

Is that what I look like in real-life? 

This also coincided with the news that a friend was diagnosed with breast cancer metastasis throughout her body. When I spent time with her, it finally dawned on me (or scared the bejeezus out of me) that I could be in her position one day, too. Especially if I've been so cavalier about my nutrition. 

Now, aside from sugar, I've had a fairly decent diet. I'm not big on pasta (except during chemotherapy!), I get my fair share of daily fruits, I can do better about my intake of vegetables, I eat appropriate portions (most of the time), I cut out coffee, I drink only almond milk, 

But I also knew I could improve it. 

I spent last summer exchanging all of the products in my home to natural remedies, including my makeup, shampoo, lotions, and soaps. I began drinking water from my local Coop, and I met with a Naturopath who put me on natural supplements to suppress cancer. I adopted a habit of using essential oils on my body, in my diet, and in a diffuser, and I enjoyed massages and acupuncture during the length of chemo treatments. I bought a small trampoline and a body brush, both of which have not had much use, oh well.

I was getting healthier in all sorts of ways. 

It was the damn sugar that I could not seem to kick (or didn't want to). 

Then I read "How to Starve Cancer," and I got serious. It made sense in so many ways, that I decided to amp up my health regimen and tackle what I call my "Phase II of healing."  I then pulled out Kris' book. 
 
Sigh. It takes what it takes. 

And to my surprise, it hasn't taken much. 

I have cut out sugar, including my almost-daily chai latte, and have replaced it with a tea latte instead. It's not as exciting since I'm not getting the serotonin high, but I'm getting used to it. I'm also beginning my day with a green juice and have ditched anything gluten. I never considered this to be a problem for me until I read Kris' book. 

I am already feeling better and have already lost weight. Easily. 

I am not hungry and have not craved anything. I cannot believe I didn't heed the advice of friends and my Naturopath to cut out sugar earlier. I have tried, but have always gone back. Ahem, that's the nature of addiction. 

But now with statistics in my hip pocket and a very real possibility that cancer could strike again, I feel better equipped to stick to this new way of life.

Besides, I feel great. Perhaps that should be the #1 reason to stick with it!

                                               *************************************************************

It is now a year after initially writing this blog, and sadly, I am in recurrence.

I'd spent most of last year sticking with my new eating plan, up until Halloween when I added Reese's peanut butter cups, then it all went to hell with each subsequent holiday. 

Do I believe that reintroducing sugar caused my cancer to return? 

Not necessarily, but we will never know, will we? 

In the meantime, I've re-read my books and feel more committed than ever to eliminate sugar once again. Mostly because I don't want to take another chance--whether sugar is to blame for my recurrence or not--and because I know that when I quit sugar, I lost weight quickly and easily, and felt great. 

I want that again, period.

I don't have to blame cancer in order to take a deeper look at my eating habits, then change them--just because it's the healthy thing to do.  

As I was finishing up writing my previous blog a few days ago, I received a call from my oncologist.

I had emailed him post-surgery, asking if it would be okay for me to return to work before the biopsy results came back. Since I work in a highly vulnerable environment, I wanted his approval so that I wasn't putting myself or others in jeopardy. 

I was already in quarantine after getting a COVID test on Saturday, and I remained in quarantine until my surgery on Monday. 

To be better prepared to answer my question before my anticipated return to work 3 days after my biopsy, he called the pathologist, then he called me.

"The pathologist is seeing some of the same material that was found the first time, but he's also doing more testing. Until we find out for sure what the results are, I want you to stay in quarantine." 

Damn. This may really be positive.

I had hoped that this was all just inflammation from a 3-week cough I'd had this spring. After all, my labs are normal, I feel fine, and my oncologist kept telling me that what was presenting was "not typical with recurrence." 

I spent most of Wednesday making phone calls and filling out on-line forms for a possible medical leave from work, while lying to a few of you who asked for an update. If the results were still not definite, I did not want to alarm you unnecessarily. I also had no news or answers that would alleviate the worry I know you were all feeling on my behalf. 

I don't know what the next steps are. I don't know if I am going back to work anytime soon. I don't know how bad this can get. 

I had music playing, I had received good news about possible interim financial support, and my body soreness from the day before was improving. It was a good day. 

But then a certain song got the best of me, and tears began to flow. 

"How the hell can I do this again? And what if it doesn't work this time, either?"

fuckohfuckohfuckohfuckohfuckohfuck!

Can I please just rewind back a few months to have caught this just a wee-bit sooner? 

When I was initially diagnosed in 2018, what I thought were heart issues led me to the doctor, which quickly led to a cancer diagnosis. 

Son of a gun, did the same thing happen this time, too?

Just weeks before Christmas, I felt a stabbing pain in the wedge just below my sternum, with a very subtle clenching in my throat, much like the constriction that is felt upon throwing up. I was walking around Costco, thinking to myself that there were plenty of people around me should I go down, but the pain subsided in about 5 mins. 

It wasn't until I was at work in late February when it happened again, but this time the pain was less severe and it lasted about 3 minutes. I was in a resident's room and was able to complete my nursing assessment when it disappeared as quickly as it had started.  

But when it happened again just 2 weeks later, I worried that I may have to get my heart checked out again. Around this time, I also started getting heart palpitations, which set my nerves on edge.

But was this typical of a heart issue? I had no pain around my heart, no left arm discomfort or numbness, and the constriction I felt in my throat did not radiate from the bottom of my sternum, but was separate from it. 

I also know that heart attacks do not present with typical symptoms in women, so I contacted my PCP. A standard stress test came back positive for coronary artery disease (CAD), but it was ruled out a few days later when a more detailed, nuclear stress test showed that all of my veins and arteries were in great working condition without any signs of disease.

It didn't even occur to me to consider if cancer was returning. 

So when my CT came back positive on May 12th, I was surprised.   

Reading up on recurrence while recovering from my biopsy this week, I was reminded that it's not uncommon for NHL to return, especially in the first two years. 

Somehow I'd missed that tidbit of information last time, perhaps because I was so focused on surviving the first round. Since this journey has been so full of irony, it can't be left unsaid that I celebrated 2 years since my initial diagnosis on May 8th, and May 12th was my routine CT. 

Go figure. 

But I sobered myself up with some encouraging stats: 

• There are proven treatments for NHL recurrence;
• NHL is very treatable but finding the right cocktail sometimes takes time;
• My labs are all super-normal; and
• I had TWELVE tumors last time, the largest measuring 10.6 cm (that's just over 4 inches!).

​This time, I'm hoping it was caught early since it's just a minuscule size of 1.6 cm. I believe I'd been walking around with lymphoma in my system for months, possibly years, the first time so this is hopeful news, indeed. 

At least that's how I'm pacifying myself while I wait for the results and the plan of care from my doc.

Having time alone to process this new information has been helpful. It's been important that no one else knows yet so I don't take on any of the sadness and fear that will undoubtedly be shared with me. While I haven't freaked out (I never did last time, either), I have been able to sit with my raw feelings of sadness, then put it all into context. 

After all, this does not necessarily mean a death sentence, nor does it mean the end of my life as I know it. It's merely another annoying interruption where I get to focus all of my attention on my health. 

So while I've been home waiting for the "official, definite" results of the biopsy, I have already gotten used to the idea of a major life shift that you are only now learning about. 

A few hours ago when I received word that the biopsy results confirmed a recurrence of NHL, I was already primed.

But please understand this: I am not afraid, because I am good at Doing Hard Things. And I've been here before, so I already have a road map. 

My job was to call some of my people to let them know, to finish writing this to let you know, and to officially notify my employer that because of COVID and pending cancer treatment, I have to take a leave of absence from work, effective immediately. 

In the meantime, my case will be reviewed at a Tumor Board on Wednesday by several top-notch oncologists from around the area, including Seattle, because this recurrence as it has presented itself is so "unusual." 

The lack of rush and "atypical" status have actually put me at ease, so I'll take both as good news as I plan to enjoy my weekend.

​Thank you for all of your well wishes and prayers. 

On May 12th I had my 3-month check-up, which included the usual blood draw, followed by a CT scan that hadn't been done since the previous November.

I have been conditioned to put a lot of stock in my blood work since a high or low value can signal a problem. And since this journey began two years ago, my blood work has been consistently near-perfect (even while undergoing chemo). 

So when my LDH level came back nearly the lowest it has ever been (188), I was relieved, which allowed me to mosey through the rest of my week with nary a worry about the scan. (LDH fluctuates in response to inflammation in the body, so a higher-than-normal reading usually signals cancer, or in my case, a possible recurrence). 

Four days later, I met with my oncologist to confirm that my labs were stellar, so I wasn't prepared when he segued into saying, "but the CT scan found two new areas of concern."

It took me a minute to compute what he was saying, mostly because I was not expecting any bad news, but my body remained calm so I was able to ask the appropriate next questions: 

"What does this mean?" and "What are my next steps?"

"We might be looking at a recurrence, or it may just be inflammation."

To make that determination, he was going to order an Urgent PET scan which would be able to look at the areas in more detail.

"Urgent" apparently means "two weeks" since my insurance company wasn't buying it that I needed another scan on the heels of the CT just weeks before. And at the cost of eight grand a scan, the process can't be hurried. 

But finally, the PET scan took place on May 29th, the same date two years ago when I underwent my biopsy surgery. (Oh, the irony!). 

My oncologist called me with those results, and explained that an area measuring 1.6 cm adjacent to my trachea was lighting up "like a Christmas tree" on the scan. The second, larger area of 3.0 cm, was not lighting up at all.

So, one lymph node was deemed "suspicious," while the other was not. 

"I want to see tissue in a dish in a lab," he said, "before attempting to make a statement about what 'this' is." It could be an inflammatory response from a virus I had months ago, a recurrence of my Non-Hodgkins Lymphona, or nothing at all.

Although the result of the biopsy has the potential to completely upend my life again, this time in a much bigger way now that COVID-19 is a factor, I feel no fear.

I had already been told months ago that if COVID-19 turns up at the place I've continued working as a nurse throughout the pandemic, that I would have to take a leave of absence. And if I'm undergoing treatment of any kind, I certainly could not stay, whether there was infection in the building or not. This is in direct opposition to what I did last time when I continued working through all of my chemo and radiation treatments. 

But still, I'm calm. Happy. Grateful. 

Because the moment I was told the news after the CT, my body stayed neutral.

I felt no flip in my stomach or extra beat in my chest that would signal panic, and I've learned to put a ton of faith into how my body reacts to just about everything in my life--from what it needs throughout the day, to assessing what actions to take regarding work and friends, to receiving potential dire news--because it has always been so spot-on in its predictions by the way I feeeel. 

Do I somehow have the inside scoop that this may not be a recurrence? 

No, I think it runs deeper. 

I believe my body's calm reaction because I'd like to think that it means that everything will be okay, no matter what. 

My lab work and my health also tell a story that is not typical of recurrence: my LDH is nearly the lowest it has ever been, my other lab work remains perfect, I have no symptoms that would signal a relapse, and I have never felt better.

According to my oncologist, nothing is pointing toward a possible recurrence except for a 1.6 cm area next to my trachea that lit up on the screen. 

"This is not typical," he kept repeating. "Usually we'd see an explosion of areas, not just one." 

"But if it is?" I asked. 

I expected him to launch into a litany of plans around chemotherapy or stem cell transplant, since that is the typical protocol with a recurrence, so I was greatly relieved when he told me that since the area is so limited, he was hopeful that a few focused rounds of radiation may do the trick. 

Phew!

But first, I met with yet another new doctor, a surgeon, over the phone on June 16th. The date initially felt too far away for an "urgent" consultation, but my oncologist had assured me that he and the surgeon were comfortable with the wait. And since the surgeon works at two separate buildings for two-week stretches, I had no choice but to wait...again. 

In the meantime I remained calm, "forgetting" that there may be a potential problem up ahead.

My chat with the surgeon lasted all of 7 minutes, where he explained the procedure that he's "done hundreds of times" and laid out the risks, which all seemed fairly minor. After another 48-hour wait, I received news that surgery would take place as his first case, bright and early on Monday morning, June 22nd. 

I felt no anxiety walking into surgery on Monday, and everyone--from check-in to recovery--was wonderful. Somehow in these past two decades, I've managed to have eight other surgeries so I have become somewhat of a pro at this.

As I was wheeled into surgery, I told the staff about my OR incident when my port was removed over a year ago: after being given my first dose of sedative, and without prompting, I launched into a very loud, very articulate count-down from 20 to 1 IN SPANISH! I wanted to warn them that I tend to embarrass myself under the influence...

Then poof! I was back in recovery, waking up, coughing, looking around in a dazed state of confusion. 

I love that about surgery. One minute I was awake, laughing, and the next I was waking up, as if from a dream I could not remember. 

The rest of the day was spent on the couch, feeling slightly "off" from my normal, perky self. It almost felt like I'd just had chemo, which left a literal bitter taste in my mouth. I had to remind myself that a scope had just been inserted into my trachea, and a sizable pinch of skin was removed, so of course I would feel out of sorts. 

By Tuesday morning (yesterday), I woke up feeling very sore. My throat, my neck, my lungs, and my back all felt slightly on-fire. I was reminded of my nursing school days when I attended my first surgery. A very large lady was having a rotator cuff (shoulder) repair and the only way to keep her on the narrow operating table was to duct tape her to it! I was horrified, but it was then when I learned that man-handling lifeless bodies in the OR is not an uncommon practice. 

(Hence my very sore body).

My oncologist called last evening and asked me to remain in quarantine until we get the biopsy results, hopefully by Friday. So now that I'm feeling better, I plan to take advantage of a few more days off from work while I recover fully. 

Am I worried? Not really. What would worrying solve? Either there is a snag or there is not, and the only way to determine that is to have obtained a biopsy. 

So for now, we wait...

In addition to writing this blog, I also write a newsletter for my life coaching business and I just came across this from a few months ago. I like it so much, it's worth sharing again...

"Things everyone needs to come to terms with: 

• No response is a response.
• If they wanted to, they would.
• Timing will not always be in your favor.
• Not everyone has the same heart as you." ~ FB post 

Do you struggle with this, the way I do? 

Having cancer has done a number on my relationships, dismantling ones I thought were strong, while creating new ones from places I'd never thought to look . 

But, still...

Despite the big tribe that came out in droves while I was enduring cancer, I continue to lament on the few who disappeared. 

I stew. I feel hurt. And angry. 

But as a life coach, I know that when I'm disappointed by others' actions, I am also resisting reality by expecting them to act as I would. 

Because, of course, that's a ridiculous no-no. 

And fighting against reality is how dis-ease is able to take hold and cause diseases in our bodies. 

Like cancer. 

I cannot afford to hang onto the sadness I feel about the people who have walked out of my life. People I have loved. 

As the quote above reminds me, not everyone has the same heart as I do. But here's where you lose me, because I know my friends' hearts. 

At least I thought I did. 

I wouldn't have been friends with them if they had traits that weren't conducive to building strong friendships. 

And they still left. 

Which boggles my mind, and leaves my heart aching. I don't know how to act, mostly because I don't understand. 

"Why would a friend disappear after I was diagnosed with cancer?" 

It just doesn't make sense to me, because I cannot imagine retreating if they had disclosed the same diagnosis to me.  

But in the grand scheme of having had cancer and living to write and talk about it only a year later, losing a few friends is, in comparison, minuscule. 

Unless it's not. 

Because I lost two close friends. Friends I trusted and loved. Friends who had been around for while. Friends who I cherished and would do almost anything for. 

But can I even call them "close friends"? They both disappeared without warning or explanation soon after cancer came on the scene. 

I can't change what has already happened, so what's the opposite of fighting against reality or stewing in sadness and confusion? 

Acceptance. 

I have no idea why they chose to retreat, nor do I have the right to judge them because I feel hurt by their absence. 
I just have to feel the feelings that have been left in the wake of their disappearance. 

And sometimes that doesn't feel like enough. 

My immature-self wants to retaliate and deem them "bad" friends. But my wise-self knows that I just have to feel the hurt and disappointment and sadness and pain, especially when I don't want to. 

Because feeling the pain is how we heal. 

It's not the words we use to attack others, or the mantras we recite to feel better, or the confrontations we want to have with the people who have hurt us that makes the hurt go away. 

It's feeling that leads to healing. 

I have to mourn losing friends who I thought were on my team for the long haul. Discovering that they weren't is painful, but I don't get to hurt them in return. 

The above quote is also a good reminder, a kind of note-to-self, that if they wanted to hang out with me throughout my year of cancer, then they would have. 

And when I try to stay in touch with them, their lack of a response is a response. 

So if you're like me, and you're struggling with the pain of others' hurtful or confusing actions, remember that when the troubling feelings begin to come so quickly that you may feel like you're drowning, you just have to remember to breathe.

Then feel all the feels.

Let go. 

And Forgive. 

Then move on. 

Even when it feels hard. 

Or impossible. 

Or it's the last thing you want to do.

Do it for you, the way I have to do it for myself, too.  

Because you and I deserve people in our lives who choose to show up when we need them most. 

It has also helped to consider that maybe God has dismantled a few relationships in order to make room for new ones that are meant to help me become the best version of myself. 

I like that.  

"Tragedy doesn't change who you are. It shows who you are."
​
This has been one of my favorite quotes since my life took a detour decades ago. I learned, first-hand, how tragedy has a way of bringing you to your knees while showing you how strong you can be. 

In the midst of intense grief, I was focused on just one thing: being fully immersed in getting through my days without falling apart every moment. It was the most present I had ever been. 

And it happened again when cancer struck. 

My life was narrowed down to the basics: cancer treatments, rest, friends, and work. The rest became inconsequential as I focused on becoming well again, working at my job every chance I could to keep my financial head above water, being with friends when I felt up to it, and resting as much as I needed to. 

Just tonight as I was driving around town running errands, I felt immensely grateful for being able to fill up my tank of gas and buy groceries without worrying about how much money I have in the bank. I am reminded often how some people in my circle live paycheck-to-paycheck so I don't take my ability to spend money lightly. 

I felt grateful for having the stamina and energy to run into several stores while someone in my life has been newly-diagnosed with cancer, and another friend will be finding out this week if she will be facing the same fate.  

My life is full and busy and alive. I move through my work days with barely a moment to sit down, I rush home to get to yoga on time, I eat on the run and I have so much energy, it's hard to imagine that cancer had ever slowed me down. 

And while I wouldn't wish cancer on my worst enemy, I do believe that experiencing a difficult life event brings so much growth and too many goodies to ignore. I don't pity the person who has to face any tragic event, though I do offer bucket loads of empathy and help. I will sit in the trenches with anyone who needs a friend, some company, or a shoulder to cry on. 

But I don't usually wish the tragedy to bid adieu because I know, in so many ways, how a tragic event shows you what you're made of. It crushes you, brings you to your knees, then slowly lifts you up until you're able to see yourself for the truth of who you are.

You are made powerful. You are made strong. You are made to conquer and live, really live. 

And each time my life has brought me to my knees, I have been grateful for the opportunity to become more of myself again. 

And while I am full of gratitude that my life is big and busy, I also miss the simplicity of my life when I was wholly present on just a few simple things.  

I also miss the closeness and intimacy I felt with God. In '96, I felt His presence in my home, in my heart, and in my life. He was uber-present and real. 

When cancer showed up just shy of two years ago, I looked high and low for him again, but was disappointed to realize that I was alone in my experience of cancer. It wasn't until I looked around, day after day, and saw how friends, family, co-workers, and strangers kept showing up for me as I healed. 

It was only then that I recognized God again. He'd been there all along, vibrantly showing himself in the smiles, hugs, meals, tears and comfort my tribe had been providing for me while I was healing. 

​