The "C" Word

I’ve probably spent too much time contemplating if and how to share my cancer story.  Should I write an inspirational story feigning strength and bravery?  Should I simply present the clinical facts?  The truth is, I survived because my cancer was caught early… many people aren’t as fortunate and I’m not comfortable celebrating my good fortune when I know so many who have had less positive outcomes.  So instead, I’m going to share the day-to-day reality of a cancer patient because my story would be nothing more than a few pages of useless words if it didn’t offer some insight that might be helpful to someone else facing a cancer diagnosis of their own, or of a friend or loved one.

Photo by Junion Photography - 2019

I remember once asking my doctor what an abnormal breast lump felt like.  She commented that benign breast fibroids, cysts, and calcifications are common, but that I had unusually smooth breast tissue – which was good because it would be especially easy for me to notice any changes.  She was right.  In late 2020, I felt a lump in my breast.  However, I assumed it was just changes related to age and with the hassles of appointments during the pandemic, I waited a month or two before calling to schedule that mammogram I was overdue for.  I didn’t really want to tell anyone that I felt a lump, I just wanted to know if it showed up on a mammogram.  Unfortunately, there was about a 3 month wait for screening mammograms, so on December 15, I saw my primary care provider who scheduled me for a diagnostic mammogram 3 days later.

On December 16, I closed on the purchase of a new home.

 

More on that later…

The mammogram was followed by an ultrasound – as is always the case for me.  Apparently even “smooth” breast tissue can be too dense for a decent quality mammogram image.  They found six or seven abnormal spots, so they scheduled me to have them biopsied on Christmas Eve.

This was my first mistake… we have our benefits open enrollment in November, and at that time, I realized that I didn’t use any of my health savings account in 2020.  I had more than my annual out of pocket maximum saved, so I reduced the amount I would contribute in 2021.  But in the last two weeks of December, I met my full deductible for the year.  Had I believed that the biopsies might actually result in a cancer diagnosis, I would have waited 8 days and had them done in the new plan year.  That little mistake cost several thousand dollars, as the tests and surgeries scheduled in January quickly added up to my deductible for 2021.

Although my clinic didn’t allow guests to accompany patients to appointments during the pandemic, they made an exception and Jim was allowed to sit beside me during the biopsies on Christmas Eve.  They took over 20 tissue samples from 6 different sites.  Only one of the sites was the lump I could feel.  There was one more spot that they wanted to sample, but I was nearing the limit for how much lidocaine they could inject in me in a day, so we decided to wait until we got the results before taking any more.  I remember not wanting to worry my family on Christmas Eve, so I stuffed ice packs in my bra on the drive to dinner at my sister’s house, then hung them from the passenger side window of my SUV while we ate so they would re-freeze for the ride home.  My brother-in-law doesn’t miss a thing, so of course he asked what was hanging from my car door – I don’t recall the answer I gave, I think I just tried to quickly change the subject.

There was a lot of waiting due to the holidays.  Sometime around January 8, 2021, I learned that the biopsies revealed a 2.3 cm ductal carcinoma in situ (DCIS, stage 0) that was positive for both estrogen and progesterone receptors, as well as a rare but benign tubular adenoma, and several fibrous spots that weren’t concerning.  Interestingly, many doctors don’t believe that DCIS is palpable, but I confirmed that the DCIS was found in the lump I could feel.  Treatment for DCIS is typically partial mastectomy (lumpectomy) followed by radiation treatment.  However, my oncologist recommended more testing before making a final decision on the treatment approach.

A quick note on DCIS.  It is not invasive and is considered Stage 0.  Some people consider it “pre-cancerous”, but it can become an invasive cancer if left untreated.  I know someone who had this diagnosis and was told she didn’t have “real” cancer because she didn’t need chemotherapy and didn’t lose her hair.  As far as breast cancer diagnoses go, it is the best one to get in terms of outcome, but it is still a cancer diagnosis!  Please don’t ever downplay what someone is going through during cancer treatment just because the staging is low, or their prognosis is excellent.  Cancer treatment sucks, even when the cancer itself isn’t one of the “bad ones”.

A breast MRI and genetics study were added to the list of tests to undergo before deciding on a treatment plan.  While waiting for the genetic test results (which came back negative for any gene mutations that made recurrence more likely), Jim and I began moving our belongings from both of our apartments into the new house.  I was on a lifting restriction for part of this, so things went much slower than I had planned.  We got everything into the garage and set up the bare necessities in time for my lumpectomy on February 18^th.  The surgery went smoothly, although I was a bit unsettled when one of the meds given to me immediately before the surgery caused a loud ringing in my ears.  I woke from surgery more easily than I usually do with no noticeable side effects from the anesthesia, so I went home and logged into work.

 

Prior to my surgery, I hadn’t told anyone about the diagnosis except for immediate family and two close friends.  I posted about my experience on social media the evening of my surgery, which likely caused several other close friends to wonder why I hadn’t told them.  The truth is, I didn’t want to worry people before I had answers.  At that point, I thought I was done with everything except a few rounds of radiation.

My son’s lease was up at the end of February and so we started adding yet a third household of furnishings to the new house.  My phone rang as I was driving a U-Haul truck down Grand Ave in Wausau.  It was my oncologist’s nurse wanting to follow-up now that they had the histological results from my lumpectomy.  Expecting to be told that everything looked good, I asked if she could call me back in five minutes when I arrived at my son’s apartment.  She called again with my oncologist standing by as I stood in my son’s doorway greeting the movers.  My phone was acting up, so I answered the call on my watch.  Between the background noise of the movers, the low volume of the speaker on my watch, and my oncologist’s heavy accent, I made out only some of what he was telling me before I heard him suggest that I just come to his office.

Upon settling into my oncologist’s office, he explained that they didn’t get clear margins on the lump that was removed, and within that lump were 8 separate cribriform carcinoma tumors that hadn’t been picked up by any of the prior tests.  Had there been one tumor the size of the sum of the 8 tumors, it would have been considered a Stage 2 diagnosis.  However, technically, I had 8 stage 1 tumors.  My oncologist had never seen a case like this, and if the 8 tumors didn’t show up on the tests, it begged the question of whether there were more.  Because of this, he recommended we treat it as Stage 2 cancer with chemotherapy and radiation.  But first, I had a full body PET scan to look for signs of any other masses, a second surgery to remove more of the area where the first (DCIS) tumor was as well as to remove a couple lymph nodes and insert the port that my chemotherapy would be administered through, followed by a poorly timed echocardiogram less than 24 hours after surgery to make sure my heart could handle chemotherapy.

I remember going into the second surgery on March 4^th ready for the loud ringing in my ears again, which didn’t happen, and expecting to wake up feeling as good as I did the last time, which also didn’t happen.  I found it curious how the exact same surgery, surgeon, anesthesiologist, and surgical team resulted in two very different experiences.  I realized later that day that it was exactly 8 years to the day after I had my right adrenal gland removed due to a tumor that was producing too much aldosterone.  Although that tumor wasn’t cancer, I was treated in Froedtert’s Cancer Center.  I remember thinking how much nicer Froedtert’s facilities were.

On March 9^th, we picked up a new member of my care team…. Sookie, an 8 week old English Springer Spaniel.

 

I had been given an overwhelming amount of information about my diagnosis, even a book from the hospital where the nurse had marked pages and highlighted parts that were relevant for me.  Being who I am, of course I read everything I could get my hands on from reliable sources about the chemotherapy drugs I was told I would receive.  On March 10^th, I arrived for my first round of chemo and learned they changed which drugs I would receive.  I went from planning to have 6 rounds of cyclophosphamide and doxorubicin over a 12 week period to 4 rounds of cyclophosphamide and Taxotere over the same period.  Because of the change, I wasn’t familiar with Taxotere but I learned a week later that it is associated with permanent hair loss in some patients.

The actual administration of chemotherapy itself isn’t all that bad.  I went in early every third Wednesday, from March 10 through May 12.  They checked my blood first to make sure I was healthy enough to get the treatment.  Then, I relaxed in a chair and was given drugs to prevent nausea as well as a steroid and Benadryl to prevent any reactions to the chemo drugs.  I found myself fighting to stay awake long enough for them to start the first chemo drug.  All of this, from the blood draw to the drug administration, was done through a needle that was inserted through my skin into the port in my chest.  Before sending me home with more pills for nausea, they taped a small device onto the back of my arm which inserted a small tube through my skin.  24 hours later, a dose of Neulasta was injected through that tube, and roughly 20 hours later is when I started to feel like crap.  Neulasta is a $6500 shot in the arm that kicks your immune system into high gear, causing your body to rapidly produce white blood cells to prevent infection.  In the process of doing this, it causes inflammation in your bone marrow – literally causing every bone in your body to hurt.  Badly.  I feel nauseous just remembering it.

The weekend after chemo was usually the worst, and that sometimes carried over into Monday, but by Monday evening I was through the worst of it.  The thing to remember about chemo, though, is that the effects are cumulative.  On March 18^th, my best friend flew in from Arizona to spend a few days with me and help me cut the hair that I was about to lose into a short style.

 It wasn’t long after that I got tired of shedding and just shaved it all off.  I stuck with turbans throughout the chemotherapy and waited until I was feeling better before buying a wig.

As I mentioned, the effects of chemotherapy are cumulative.  Although my last treatment was in May, my blood tests in June still showed my red blood cell count, hemoglobin, hematocrit, and lymphocyte counts all below the target range.  At some point in there, I felt so weak that I was nervous just taking the one step down into my sunken living room.  I can remember carrying a basket of laundry from my bedroom to the laundry room and just sitting on the floor in tears because of how hard it was.  I felt as if all my muscles had shrunk.  I couldn’t bend down to pick something up or roll over in bed without feeling like I was pulling something.

I was spending more time in bed, eating comfort foods to combat the nausea, retaining water, and unable to get comfortable.  I felt like a short, bald, fat circus freak.  My house was a disaster from the incomplete move, my garage too full of boxes to park in, but I turned down offers of help because I just didn’t want to be seen.  At some point during that time, I remember thinking, “If it comes back, I won’t put myself through this again.”  Weeks after my last chemo, I was still developing new side effects – my skin started flaking, my nails became discolored and started to lift off, and the edema in my legs became worse.  I developed an allergic reaction which presented as a rash across my entire back.  That also had to be biopsied to confirm the cause.

I started radiation a week after chemotherapy ended.  I was given the option to heal a bit more first, but I had hopes of being done by the 4^th of July and maybe being able to enjoy the summer.  Every weekday for 4 ½ weeks, the left side of my chest was irradiated.  Like the chemo, radiation side effects are cumulative.  They also are delayed by about 10 days after the treatment.  Although I finished my radiation treatments in mid-June, my skin was still falling off in chunks two weeks later.  But at the same time, I also figured out how to wear a wig.

There is more... the estrogen blocking medication that gave me daily migraines, not being able to wear regular antiperspirant or a bra during radiation treatments, trying to find shoes to fit my swollen feet before a business trip, new kidney stone attacks, neuropathy in my feet, continued numbness in my chest and underarm, and so on.  But I think the important stuff has been sufficiently covered. 

All this might seem like TMI, but I’m sharing the details because inevitably someone would say something like, “Now that you’re done with cancer treatments….”  And it is important to realize, being “done” with the treatment is not even close to the same thing as being “done” with the side effects.  I’m writing this in mid-Sept, still fighting a rash, as well as some fatigue and weakness.  But, I’m still here to share my story, so I guess that makes it all worth it.  As for those earlier thoughts that plagued me… In hindsight, yes, I would go through it again if I had to.  But I’ve learned a lot… I would do things differently, which means I have to change things now if I want to be prepared for the possibility of a recurrence.  There may never be a “next time”, but if there is:

• I need to be healthier going into it

• My life needs to simpler, my surroundings less overwhelming and chaotic

• I must have a fallback plan if I suddenly can’t work, because my health and life insurance are provided by my employer

• I need to let go of the things that no longer bring me joy – because hard times will come, but living a life of joy is what allows you to face them without regrets

So that is my story.  People comment on how strong I must be to fight cancer, but honestly, there is little bravery in doing what you’re told you must do to stay alive.  The one thing I can do by choice for no other reason than because it feels like the right thing to do is to implore you to do the following:

• Stay on top of your regular screening exams.

• Don’t tell someone who has a health change or concern that it is probably nothing.

• Keep more money than you think you need in your HSA, especially if you can carry it over from one year to the next.

• Have good health insurance, even if just for major medical conditions - so far, my medical bills have totaled over $300,000.
  

• Don’t minimize a cancer diagnosis because it is early stage or doesn’t require chemotherapy.

• Be aware that a cancer patient may feel as obligated to comfort his or her loved ones about the diagnosis as you feel obligated to comfort him or her.

• Know that the effects of cancer treatments last much longer than the actual treatment schedule.

• If you care for someone facing a cancer diagnosis, understand that the kind of support they need may be completely different than what you think.

• If you know someone facing a cancer diagnosis, ask them how they are.  Please don’t ask them what their prognosis is, and please don’t be completely absent.  Reach out – even if you aren’t sure what to say, trust me, they will notice your silence far more than any awkwardness in your call, email, or text.

• Hug your people and tell them you love them because life is short.

• Enjoy your life today, tomorrow isn’t guaranteed.

The Great Vaccine Debate

Ernst & Friederike Lindeman were my great, great grandparents.  As of 1877, they had seven children.  On Saturday, August 4^th of that year, they lost their 10-year-old daughter, Helene, to diphtheria.  The next day, their 9-year-old son, Arthur, passed from the same cause.  On Monday, they said goodbye to their 12-year-old daughter, Bertha.  On Tuesday, they lost their daughter, Maria, who was almost 7 years old.  Thursday claimed their almost 5-year-old son, Ernst.  And on Friday, they lost their last two children – 3-year-old Georg and 13-month-old Emilie.  In less than one week’s time, Ernst and Friederike went from having a full house to starting over with just the two of them because of diphtheria.  The peak of the diphtheria epidemic was between 1921 and 1925, with 206,000 cases resulting in 15,520 deaths.  The diphtheria vaccine was developed in the 1920s, and people are still vaccinated against diphtheria along with pertussis and tetanus today with a shot commonly known as DTaP.  As for Ernst and Friederike, they went on to have seven more children, one being my feisty great grandmother, Anna.

With the current controversy surrounding COVID vaccination, I decided to research how early vaccines were developed and tested before being widely used.  My searching took me back to 1721, when people who didn’t really know much about immunity attempted to prevent smallpox infections by scratching a small amount of the pus from a smallpox lesion into a healthy person’s skin.  Unfortunately, some people contracted full blown smallpox from this experiment, and those who developed only a mild case were still carriers of the disease, spreading the full illness to those they came in contact with.

In 1796, Edward Jenner tried something different – he scratched pus from a cowpox lesion onto a child’s skin then exposed the child to smallpox.  The child remained healthy.  Cowpox was similar to smallpox, but much less severe.  Jenner spread the word of his results to other physicians, seeking nothing in return.  Soon, physicians around the world used this approach.  To deliver the vaccine to other countries, orphans were infected and put on ships, carrying the vaccine in their lesions.

Obviously, many improvements have been made to the inoculation approach in the years that followed.  Smallpox claimed over 300 million lives during just the 20^th century, but in 1980, the World Health Organization declared smallpox eradicated.  It is the only infectious disease to receive that status, and it was achieved through a vaccination approach that began with no scientific controls and frankly, a complete lack of ethics.  Thank goodness we’ve advanced since then.

Someone recently asked me my opinion on the current COVID-19 vaccination situation. The rest of what I’m about to say reflects my understanding and opinion, I am not an expert on these topics and I encourage you to talk to your physician if you have questions. 

 

First, I wish people had taken the recommended precautions related to sheltering in place, wearing masks, washing hands and maintaining 6 feet of distance from others so that COVID-19 vaccines weren’t needed. But here we are, so here are my thoughts:

• Very few viruses can be cured with medication.  The way of dealing with almost every virus is to treat the symptoms, reduce their severity through the use of antivirals, allow your body to build it’s own immunity by creating antibodies in response to being infected, or avoid serious infection through vaccination.  We don’t have 100% effective medications to treat the symptoms of COVID-19 or reduce the severity of the disease after symptoms start.  I support vaccination because it reduces severity of the disease.

• Some viruses are prone to mutating more than others.  DNA based viruses, like smallpox, are more stable.  That is why we were able to eradicate it after it had been spreading for centuries.  RNA based viruses, like the flu, the common cold, and COVID-19, are prone to making mistakes when they replicate, which causes mutations.  The longer a virus goes unchecked, the more likely variants will form.  As variants turn into new strains, it becomes harder to prevent infection through vaccination.  Chickenpox doesn’t mutate, so you will only get it once.  Influenza does mutate, which is why there is a new flu vaccine every year.  This is the primary reason I support emergency use vaccines -  I don't want us to be in a situation where we have to develop new vaccines annually for COVID-19 variants (we don't catch all annual variants with the flu vaccine, the same would be true for COVID-19).  Time is of the essence if we want to slow the rate of transmission to prevent variants and new strains.

• To reduce the risk of new variants, we also must reduce the number of infected individuals.  Herd immunity is essential.  The “right to choose” frequently comes up in conversation.  I understand this is a sensitive topic.  I support the right to choose, but with prejudice.  I have seen too many people digging in their heels because of misinformation or based on principle rather than on scientific evidence.  If your decision to not get vaccinated is purely to take a stand on your right to choose, I would ask you to reconsider your priorities.  I support the right to choose when there are legitimate medical reasons to not be vaccinated.  However, I also think people should be challenged when their choice provides no benefit to themselves but does reduce the likelihood of us or our children’s generation living in a world where COVID-19 infections are rare, like measles or polio.  At some point, we must acknowledge that being part of a civilized society involves being inconvenienced for the greater good - and for the good of those with medical conditions that prevent them from safely being vaccinated.

• While the FDA hadn't fully approved the vaccinations before their use, they did authorize them for emergency use, which is far more FDA involvement than any number of over-the-counter supplements, herbal preparations, essential oils, and other unregulated home remedies that people regularly use to improve their health.  Not to mention the things people willingly inject in or through their skin without FDA approval, such as piercings, tattoos, and recreational drugs.

• Speaking of government oversight, I don’t recommend government mandated vaccinations, but I'm not opposed to organizations requiring evidence of vaccination status.  Daycare providers require it before enrolling your children or sending them to summer camp and that is accepted.  Exceptions are allowed, but they have to be documented.  I know some people think the vaccine is being used to somehow control us.  I don’t personally believe there are enough corrupt people in positions of power or influence to poison the nation or world’s population.  I can remember thinking things had gone too far when seatbelt laws were enacted, but those laws did save lives.

• IoT and smart devices are a hobby of mine.  I don’t believe any type of tracking device is being injected with the vaccine.  Devices that transmit data must be powered.  Devices that contain static information that can be read by a scanner must contain a unique identifier which is associated with your information in a database if they will be used to track you or information about you in a meaningful way.  When I received my vaccine, it was drawn from a multi-use vial.  At no time did anyone scan anything to associate my identity with a microscopic chip.  In addition, you have to hold a scanner very close to a microchip to read any data from it, so it would be fairly obvious if someone was trying to track you.

• I willingly subjected myself to chemotherapy and radiation, both cancer fighting treatments that are known to have long term effects, because those side effects were less risky than allowing cancer to go untreated.  For me, the decision to get vaccinated to prevent or reduce the severity of COVID-19 was minor in comparison.

• I trust the scientists.  I trust science when sound research methods are employed and the results are published in peer reviewed journals.  I have not studied the research on the current COVID-19 vaccines, so I can’t say I trust the science, but I do trust the scientists at the organizations that have authorized and recommended their use, and I fully accept that they are human and may make mistakes.  There isn't enough time in the day to fully research every possible threat to my health that I may come across in a day.  I used Zantac.  I used Round-Up.  I got cancer.  I have no idea what caused it, but I'm going to go on living my life rather than spending it personally validating the research behind everything I come in contact with daily if I can reasonably believe it won't harm me.

• I know people who have personally experienced long terms effects of COVID-19, and people who have lost loved ones to it.  I don't personally know anybody who has experienced a serious side effect of the vaccine.  In general, I have not heard of any vaccine side effects that are is as serious as the risks of COVID-19.  Yes, there are people who have had serious allergic reactions to the vaccine – an allergic reaction is not the same thing as a side effect.  Nonetheless, the rate of serious side effects and reactions is still far less than the rate of those in people who contract COVID-19.

So those are my reasons for being vaccinated and hoping my friends will follow suit. I’m not one to get into heated debates or end relationships over it, but if I can get one person to think about and further research their decision, then writing this was time well spent.