When Your Oncologist Leaves

Two weeks ago my oncologist told me some devastating news – he was leaving. It’s honestly one of the hardest things I’ve heard at an office visit over the years, and trust me, there have been some tough conversations.

He is leaving the UW health system.

He is moving to Florida.

He said he had to go.

What does that even mean?

I know I have been unhappy with some of the management decisions that have trickled down and affected my care. There have been changes I don’t think serve patients’ best interests. There have been facility needs that have gone unmet or approached with band-aids rather than true solutions. There very well could be demands put upon him that I know nothing about and he feels he can’t work in an environment that doesn’t match his philosophy anymore. I don’t know anything for sure other than he is leaving.

He is a GOOD DOCTOR. The best.

I understand he has to do what he needs to do. I can’t be mad at him for doing what is best for him. However, if he’s leaving because of some bureaucratic crap coming down from people who have lost their connection to treating, caring, and curing people with cancer, then I am outraged. My gut tells me to be outraged.

Whatever the reason, I am losing my oncologist.

I feel such sadness and an immense sense of loss. I have that feeling of a small child who suddenly discovers she has lost sight of her parent in a grocery store and stands frozen and scared as she begins to cry. I feel broken like a mirror that has shattered into many shards of sharp glass. The image looking back at me is now jagged and distorted. I feel like a kicker who missed placing the final kick through the uprights by inches in a championship game. Everything feels wrong. I am all out of sorts.

My oncologist has been a constant in my life for more than seven years. I’ve seen him every three weeks for the last three years. I’ve known him for about fifteen years because he was also my mother’s oncologist. I have held him to a very high standard. I’ve depended on him to be there for me. This is someone whom I’ve trusted, respected, and knew was one hundred percent on my side. He is a good blend of medical expertise and hope that every oncology patient needs. He understands I have many questions, I worry, and I’ve always wanted (and will continue to want) aggressively appropriate treatment options. I will choose option A with challenging side effects over option B with lesser effects if A can potentially do better work than B. Every. Single. Time.

He’s gone to bat for me on more than one occasion.

He knew how badly I wanted to keep teaching and helped me keep doing what I loved doing for years. He also told me when he thought it was becoming too tough and unrealistic.

He suggested supplements that have helped me feel healthy and strong.

He encouraged more testing that opened doors to current protocols. Protocols that have been good for me.

My oncologist understood me. He viewed me as a person and not just as a patient. I have grown very attached to him. I will miss him.

Where do I go from here?

I am fortunate for a few reasons. The UW Carbone Cancer Center where I receive care is one of the top cancer centers in the country and the only comprehensive cancer center in Wisconsin. I know I will continue to receive quality care. I am also lucky that if my oncologist is leaving, he is leaving at a time when I am doing really well. I can only imagine how much harder this would be for me to handle if I were struggling physically. Lastly, my oncologist has taught me well. I’ve learned a lot from him about my health. He has really shaped my thinking since we embarked on our doctor-patient relationship. I daresay I may have rubbed off on him, too. At least I hope I have.

I am not always an easy-going patient. I’ve edited consent forms before signing them. Someone there once compared metastatic breast cancer to a cow that had been let out of a barn. It’s Wisconsin. I added on to that analogy and told him, “Just because the cow’s been let out of the barn, it doesn’t mean it can crap all over the pasture.” I’ve questioned, I’ve pushed back, I’ve disagreed, and I’ve complained. Mind you, I’ve also agreed, supported, amazed, and sparkled because that’s the kind of gem I am. And I am a gem. I like to think my spirit has never been diminished there because of my health status.

Oncologists come and go. I understand this is true, perhaps I have been fortunate that it took this long to happen to me. People move on in the professional world all the time. Yet an oncologist is very different. In my eyes, an accountant, dentist, plumber, chef, lawyer, teacher, or other professionals all have very different relationships with the people they serve. The relationship with a doctor is different, more intense, and more personal. I feel lost, abandoned, and alone. This person just isn’t going to be around and that makes it similar to a death in some aspects. A good friend of mine has had two oncologists leave her, and a third tell her she couldn’t see her again because she has passed enough benchmarks in time and is there is no evidence of disease.

The process has started to find a new oncologist so I have one in place when he leaves in a couple months. If you know me, you won’t be surprised that I’ve compiled a list of requirements my next oncologist must have.

My oncologist needs to be:

  • Accessible
  • Hopeful
  • Positive
  • Empathetic
  • Personable yet professional
  • Up to date on current research and new treatments
  • A lot like my current oncologist 🙂

My oncologist must:

  • Have a breast cancer specialty
  • Keep a very close eye on me
  • Advocate for me
  • Remember I am a person and not just a patient
  • Accept and even enjoy my personality (I’m anxious, I’m smart, I research a lot on my own, I advocate for myself, I can be intense and insistent, I’m thorough, I’m hopeful, I’m fun, I cry, I’m sensitive, and I’m tough).

Sure, I have high standards and I am not going to settle for someone who doesn’t meet them. A good fit is essential for my best care.

I am confident I will find the right fit.

Unfortunately, I feel the time has come for me to move away from the smaller clinic setting I love so dearly and transfer to the center at the giant hospital. I need to put more weight behind a preferred oncologist than my preferred location. Truthfully, I’ve heard whispers that the smaller clinic may not stay open. I wouldn’t be surprised if it closed. It would be consistent with the kind of nonsense decisions that have been made regarding that smaller setting. Then, once again, I’d have to make a move with either a new doctor, a new location, or both. More importantly, I don’t know if I can continue to go to my current clinic once my oncologist leaves. Maybe I need a fresh start. It could be the best choice I can make.

It would be tough for me to leave and make this change. I’ve also grown very attached to my nurses, NP, and even the schedulers and people at reception. Everyone is so friendly and it’s one of the reasons I prefer the smaller setting. I get attached far too easily. Still, I must put myself first and make the decision that serves me the best.

I will be fine. I have time to accept this change, make a plan, and transition positively whatever I decide. As for my oncologist, I will thank him, say goodbye, and be forever grateful that I have been in his care for so many years. He’ll always be my oncologist. I’ll just have two now.

Consider responding:

  • What helps you when you need to make a difficult transition?
  • What qualities or characteristics do you look for in your doctor?

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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Image credit: pixabay.com

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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Image credit: pixabay.com

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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Image credit: pixabay.com

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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Image credit: pixabay.com