Thoughts on Oncology

Doctors’ roles are essential in healing.

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They should not be minimized or discounted. Cancer research will someday find a cure for what has affected us personally and our families. I am in awe for the dedication and care I have received. Traditional western medicine is only one route to choose. I know many who have stuck to this road with little question if something additional should also be done. Maybe they didn’t need or desire anything different. Maybe they didn’t know they could ask for anything else. Cancer was a six-month detour that blurred more with every passing year. It became part of their past.

However, if you only drive down Main Street, you only experience one part of a town. Side roads and rural areas are well worth the ride. They offer something different. You don’t have to travel only one or the other. My opinion is both are necessary to live well and/or be cancer free. You are the patient and in control over decisions that affect you. My healing plan consists of many side roads and rural areas that have made a positive difference for me. I am the common factor and pull it all together.

It has been so much more than a six-month detour for me. Parts still have blurred. I have traveled on many roads to get where I am today.

It seems strange that I haven’t blogged much about chemotherapy or my oncology appointments. Chemotherapy has been a focal point for far too long. It sucks energy and manifests more physical symptoms than I care to list. It sustains life while it kills cells. Chemo is reassuring and comforting in its own way. It ranks high as a huge part of my healing plan. I have hit my 100th treatment. That’s pretty significant. It isn’t a celebration, but I am checking off the box and moving on. I am still here.

There are so many other aspects in addition to active treatment that I think are also important to an integrated approach to a cancer healing plan.

A strong doctor-patient relationship is vital for my living as healthy as possible.

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The relationship I have with my oncologist is a really good one. He deserves credit for sticking with me, listening to me, and working for what I want. He knows how I feel. Yes, I’d love to be someone who visits her oncologist once a year, and eventually less than that, but it’s not the kind of survivor I am. I’m getting active treatment. I go to my doctor a lot. Sometimes it means I may be a pain in the butt. I do get all my questions answered. I even come up with some good ideas from time to time. The good news is my oncologist doesn’t have a chance to forget about me. If I don’t speak up for me, who will? I am my own best advocate.

Oncologists differ from one another. They’re human just like the rest of us. I met with a couple oncologists at Mayo Clinic in Rochester, MN, shortly after my initial diagnosis. Overall, they agreed with the treatment plan suggested at Carbone Cancer Center in Madison. Mayo was more open to surgery options. I liked them quite a bit but it was just too far a trek for regular care. I had top-notch care a few mere miles from home.

A couple of years ago I sought out another second opinion within my provider network and it wasn’t very helpful. It wasn’t hurtful either, just not worthwhile. This oncologist let me know what his opinion was on my options. I let him know what I thought of his limited research. He was not open to complementary cancer supports. I was not a good fit with this oncologist. In my opinion, he defines healing with a very limited scope. Every once in a while I see a clip of him on the local news. He has a great reputation, but I am so glad I have the oncologist I do, who also has an excellent reputation. My position is that healing includes many different aspects that work together.

I’m going to repeat that: Healing includes many different aspects that work together.

No one heals in a sterile petri dish or test tube.

My health journal helps keep all my medical information together.

A health journal has been incredibly useful for my oncology visits. It really helps with dates and specifics as to how I’m feeling, my questions, how and when medications were tweaked. I am a planner. I make the most of the short time I have with my doctor. Sometimes it isn’t so short, but again, that’s the kind of survivor I am, and I’m going to take the time I need. My health depends on it. I believe one reason I’m still doing well is because I’m able to keep really detailed notes to report to my doctor and have one place to keep all my information.

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I’m also more of an anxious person than I used to be. Cancer and anxiety go together. Keeping a health journal eases some of my anxiety because it gives me power. An added benefit is the built-in memory that naturally exists with documentation.

Ask questions. A short office visit doesn’t suffice for what I need to feel as a satisfactory visit, even with my health journal in tow. It wouldn’t hurt if office visits were about ten minutes longer than they are now. The oncology nurses are good resources in getting word to your doctor, as is electronically messaging your doctor through MyChart or any similar online technology. I am important enough, and so are you, to have your questions and concerns answered and acknowledged in a way that you understand. It is okay to disagree. I do believe everyone is there to advocate for your best care, but that doesn’t mean you blindly agree to something you don’t understand or have reservations about. There may be something even better for you.

I do believe the answer, a cure, lies in research and things like immunotherapies, targeted treatments, genomics, personalized medicine, and medical advances that haven’t happened yet.

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This is why research for advanced stage cancers is so important. More research dollars need to be allocated to advanced stage research! Click here for some suggestions. There needs to be a lot more access to better treatments and drugs that are more effective for those of us living with secondary cancer. We deserve access to advances in immunotherapies, targeted treatments, personalized medicines, and new therapies. It isn’t an option to run out of options. Keep telling your oncologist this over and over again. They meet with the other oncologists in their network to discuss cases. If they keep hearing these demands from patients, it’s more likely medicine will go in this direction.

Keep speaking up.

Patients can help steer these discussions by continuing to advocate for what they need in their office visit.

Healing and a cure are not interchangeable. A cured person may not be healed. Trauma, fear, and other physical or emotional issues can still interfere with living fully. Healing and a cure will inevitably overlap as healers, doctors, and patients work together. Stranger things have happened. Healing and a cure absolutely can overlap. I keep striving for both.

I am ever hopeful I will find a way. Always.

Make A New Door

There is a saying that goes along the lines that a window opens when a door closes. It fits if you’re Maria in The Sound of Music and venturing out of the convent on a new adventure. Otherwise, not so much. I don’t care for it and find it’s misguided. I get the point being made, but the visual doesn’t work for me.

Have you ever tried to walk out a window? I did when I was about ten years old. I held a practice evacuation drill out our dining room window in case other routes were blocked in the event of a fire. It must have been Fire Prevention Week, and well, it was me, talking about my day and being all teacher-like. It was straight forward enough, but climbing out the window is how it happens, not walking. Climbing is more involved than walking. A door closing and a window opening are not equivalent at all.

What about when a window closes? Is opening a gate appropriate? Would you come and go from a skylight? Should you dig a tunnel? No! None of these are equivalent either. They are insane comparisons.

But a door! It closed! What is one to do?

Make a new door . . . a better door.

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I love everything about this door. The ivy growth, fresh green planks, and carved heart are all perfect. This will be the door I take when I need to imagine a new door for myself. Maybe one day I will find it.

I don’t have an issue with new endeavors, but it is just wrong to say that walking through windows is the same as walking through doors. Try an experiment and come and go from your home for a week through a window and see if it’s really the best route. Chances are you’ll get better at climbing in and out of a window, but you might also attract the attention of local officers asking to see your identification.

The better path is to use your strengths and personal power tools to create a new door. Maybe you’ll make several doors and mark them A, B, and C, behind which are potential new opportunities.

My trouble is I sometimes don’t know what the new doors are really about until after I’ve walked through them and figure a few things out. For example, when I took a second year medical leave, the purpose was two-fold. My school district really was trying to make life less stressful for me. Leaving a slim chance of returning to business as usual also didn’t close the teaching door entirely. Strangely enough, when the teaching door closed, it instantly transformed into a retirement door and there I was already, moving step-by-step, and making progress. It was the door I needed in disguise.

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I have worked hard to make new doors for myself. I’m still working on the courage to walk through a couple of them. It’s a work in progress and sometimes a little scary. Courage is a good companion to have at my side.

Reiki is one of the new doors. Newish. I’ve dragged my feet. The door is there all shiny and ready. I’ve used the door but haven’t invited many to join me. It could be just for me. I don’t know yet. The opportunity is there to give and to positively affect others. Don’t get me wrong – I’m still team medicine all the way – there are just many pieces to wellness that can attribute to overall health. My basement transformed itself fairly effortlessly to a Reiki studio through envisioning a new possibility and help from Amazon. I used to think that I needed a strong calling to become a Reiki Master, but now my thoughts are different. If I can have even more energy available for self-healing, I will take it. Refusing a healing opportunity makes no sense. If I can share that with others so that they feel happier and healthier, I am working on that, too.

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Blogging is another new door. It isn’t what I set out to do. It was more of an avenue that I thought would take me someplace else, which is still possible. I’m not blogging because it brings me great recognition or monetary gain. It doesn’t.

It does give me a platform for sharing thoughts and ideas that come from my heart. I’m in it for my heart – that’s why I write.

Realizing this is causing me to reassess my motivation to be represented by an agent. Is that a door I need or am I potentially even happier with my blogging door? Sure, I’d love a little more recognition and visibility. I am excited to see what doors may open and what doors I continue to create for myself through writing.

Staying active is also a new door. It’s never too late to make healthy changes. Having more physical skills would help, but I have more than I used to have. A lot of motivation is needed to keep me focused on fitness. I liken this process to one new door after the other. Every time I experience some modicum of success and feel pretty impressed with myself, I see another door waiting for me. For example, I have very tiny biceps that I can now flex. I am fascinated with them. I can’t do much else with them so I need to keep working. I’m not sure what I see as my next step, but I will figure it out along the way.

There have been hard doors.

Doors of grief and loss.

Doors of changing definitions of normal.

Doors of hard truths.

Doors through which only I can walk.

The door marked cancer has been a doozy. I didn’t make this door or ask for this door. It’s stained with pain, sickness, always something unknown. No narratives, fact sheets, observations, or best guesses even come close to what walking through this door is like. I kind of thought I knew from what I saw my mom go through, but I so did not know. The experience is individualized. No one truly understands, just like I can’t understand another’s experience. Some come close. Empathy and compassion are wonderful supports.

Yet, the hardest times can often lead to the greatest moments in your life. Hard times make and show a person’s character. Who are you when everything really sucks? Sure, I get grumpy and down. Sometimes I cry. But I also try really hard to hold to my core beliefs. My challenges have made me mentally and physically stronger. Supposedly, I have more courage. I’m not sure that’s true. Having cancer doesn’t mark me as an automatic recipient for a badge of courage. Hardly. It doesn’t make me inspirational either. It does make me go through things that many others do not. That’s what I have to offer. Maybe something else emerges from within, but I‘m not so different from anyone else.

Not all doors need to be hard.

Doors of rebirth and renewal.

Doors of love and light.

Doors of hope. I love those doors.

Doors again through which only I can walk.

Trust is huge to walk someplace new.

If one door closes, make all the new doors you need and trust they will be better doors.

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Alabama Alligators and Being Normal

February 4th is known as World Cancer Day and just happened to coincide with the first day of a trip I took to Point Clear, Alabama. I was headed to the Grand Hotel Golf Resort and Spa to celebrate my retirement. It was a perfect time to get away from winter, from people, and from cancer as much as it’s possible to get away from it when it travels with me. The resort had everything I needed on site in an idyllic setting.

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Grand Hotel Resort and Spa  (All photos taken by me unless otherwise noted.)

Point Clear is far down south in Alabama and across the bay from Mobile. The resort was built back in 1847 for wealthy families. It was also used as a base hospital during the Civil War for Confederate soldiers. Point Clear’s location on Mobile Bay made it a valuable port. There have been a couple fires and subsequent renovations to expand and retain its old southern charm.

The shuttle ride in from the airport consisted of a lot of discussion concerning if there were alligators on the resort property and how safe I’d be walking about on my own. Yes, there were alligators in the area. No, no one had ever had a problem with one on the resort. They really weren’t commonly seen. Did I know that alligators were fairly passive and weren’t going to go out of their way to get me?

No, I did not.

You literally had to already be on top of them or they would need to feel cornered to provoke an attack. If an alligator was twenty or thirty yards away and saw you, it was not going to make the effort. It may not even be hungry. Crocodiles were more aggressive. Even so, no thanks. If I were to encounter one, and say be up close and personal where I’d be wrestling it, I would need to poke it in its eyes and it would instantly release me.

Instantly. Never mind my severed arm or leg.

As an alternative (choice is always good), I could just grab hold of its tail and flip it over onto its back and it would fall straight to sleep and be in a hibernation state.

Straight away.

None of this reassured me. I wondered how the gator unflipped itself because eventually it would wake up. I was told it couldn’t do that and it was the end for the alligator in as many words.

Another driver on a different day told me alligators were more curious about people than anything else. Curious? I think squirrels and chipmunks are curious. I do not care to see an alligator in its natural habitat.

Again, no thanks.

It became clear to me on my first night that people just spoke differently to one another here that went beyond the accent. Chalk it up to southern manners and the hospitality industry. My name was either Miss Kristie or Ma’am. It felt a little funny, but I could handle it for a few days. I entertained telling people my name was Missy just to see if I’d be called Miss Missy, but I knew I couldn’t do it with a straight face.

Past vacations with my family were very touristy. We made excellent tourists. What could we see? What tours were available? There wasn’t much down time. We were on the go from morning well into the night. We saw many things and went to a lot of places. At the end of a trip, we rated everything we did from our favorite to least enjoyed activity. Even now days, there is usually far too much discussion and planning based around restaurants and eating.

It was really good for me to go to Alabama on my own. It marks my 50th state. I am a person who has been on the go for most of my life.

In Alabama, I had every day for down time. I struggle with that because the idea of doing nothing as something is a different kind of vacation for me.

I thought about arranging transportation so I could tour the USS Alabama WWII battleship because I enjoy history. There was a boat tour I was interested in to see birds and other wildlife safely. Kayak tours were available. Those piqued my interest. Then I remembered the gators and didn’t want to be at eye level with them, even if I’d have better positioning to jab them in their eyes.

Still no.

I started to feel down that I had come such a long way and wasn’t going to do much. Then I remembered why I came in the first place – it was to take it easy and relax. I did not come to run myself ragged and see how much I could get done in a day.

Point Clear was the perfect place for my destination, named because of its super visibility. I had great clarity on why I came, what I wanted to accomplish, and how I wanted to feel.

My agenda for each day read as follows: Do Whatever I Wanted.

I didn’t want to be scheduled. I wanted to get up when I woke up, eat when I was hungry, take a long walk every day, work out in the fitness center, maybe swim, and spend time reading. I looked forward to enjoying the warmer weather and change of scenery. I hoped to write a bit every day and gather up new ideas from being in a different location. Doing nothing as something was really a pretty full day.

Porch swings dotted the brick path that bordered the shore and looked outward to the water. Hammocks waited for company. Rocking chairs made themselves at home on the patio to my room. Wicker furniture circled bonfire pits inviting guests to kick back, watch sunsets, and relax at night under the stars. Those were all signs, some pretty darn good ones if you ask me, that the pace in Point Clear was supposed to be slower and more relaxed.

There was a shuttle to Fairhope each day. One day I ventured in because I liked the name of the town (big surprise) and noticed the tulips and daffodils were out when I passed through coming from the airport. Since tulips are often one of the first spring flowers to bloom, they are associated with rebirths. Daffodils also symbolize rebirths and new beginnings. How perfect to see so many in a quaint town with hope as part of its name. This vacation signaled a new beginning for me – a lifestyle of staying active and embracing opportunities to relax.

I walked around a bit, popped into a few shops, and visited the history museum. Much to my surprise, it was in one of the boutique shops that I encountered my one and only alligator. She looked sassy and not the least aggressive, but I left her where I found her.

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Taking time for self-care is essential for me as I live with cancer and live well. No doctors this week. No appointments. No need to share with anyone. There would be no one judging how I looked or analyzing my every word or action. It’s as if I could be completely normal for a few days. As far as anyone knew, I was normal. That was my story and I was sticking with it.

Normal. What a wonderful feeling. Getting away from it all was awesome. It was definitely a perk of being on my own that I didn’t have to factor in someone else’s life.

Forgetting. Being normal.

I know there are all sorts of normal. Normal for me is abnormal for others. I want the normal of being healthy. I want the normal of waking up with energy and not having to conserve it so I can do something I really want to do later. I want the normal of being able to plan my life with certainty and not wonder about dark things like alligators and such.

Others may have their own inner struggles with what normal looks like and feels like for them. Everybody has some insecurity whether it’s related to health, personal relationships, work relationships or performance. Some aspect of a person’s life is hard and just doesn’t feel normal. Some people are awfully good at looking like they have it all together. A normal life (problem free) is not possible for anyone.

At this point, I also realize I’ve come face to face with the dreaded alligator just about every day, and that every day I flip it by its flippin’ tail after poking its eyes for good measure. It’s my attempt to keep living well with strength and purpose. I make my own rules for forgetting what I want to forget and being normal.

Forgetting is a luxury. Being normal is relative. I’ll take what I can get.

What I got in Point Clear was a place where no one knew I have cancer. Discovering that clarity was a tremendous gift. I felt happy. Capturing this feeling requires that I stick with my story of being normal when at home. I can stick with it because I can live that story. It involves forgetting the parts of my life that are challenging in terms of my health.

It demands that I keep flipping that alligator whenever it dares to snap its ugly snout at me.

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See you later, alligator.