3 weeks out…the time warp continues

3 weeks ago almost to the minute I was wheeled out of the post-op holding area and into my room at MD Anderson on the 6th floor where I joined the other thoracic patients residing on two wards.

I remember feeling as if I were observing someone else living my life. Hovering out of my body in close proximity. Connected and yet distinctly separate. I remember how loving and present Brooke was, every ounce and fiber of her being focused on me. The full magnitude of her energy concentrated on me like a tractor beam. I immediately liked the energy of my night nurse. I felt a sense of relief that I had someone who was gentle and kind looking over me. And even through the haze of the anesthesia I felt at ease that I would be in good hands when my loving Brooke went home for the evening. The nurses at MD Anderson were amazing. Maybe I just got lucky with the four primary nurses assigned to me, but I doubt it. Based on what I have observed at MD Anderson it is a trait that runs throughout the organization. And the nurses are the cornerstone of that care.

It was late. Much later than we had anticipated or planned for. Brooke is not a person who does well after about 9 pm in the evening. You would not have known it that night. She lit up the room, and probably the whole ward, with her energy, kindness, and smile. I distinctly recall that the nurse and Brooke insisted that I get up and walk the ward. Within hours of a major thoracic surgery they had me up and moving. It was quite a spectacle. Walking along attached to my “totem pole” of IV’s, pain med dispenser, catheter, chest tube and collection unit…not to mention my stylish gown flapping in the breeze. I felt as if I were going to topple over at any moment. They told me later that the nurse trailed me with a rolling chair in case I collapsed. My head was swimming with narcotics, and the headaches and dizziness were intense.

That first night was awful. Constantly being woken up by beeping respiratory monitors. When I fell asleep my respiratory rate fell to concerning levels. And then the constant poking, prodding, checking, etc. Sleep was low on the priority! I started to experience a sense of time moving at an odd flux, fast and slow at the same time. I was able to get discharged relatively quickly, 4 days, yet it felt like 8.

3 weeks out I find that sense of time warp continues. Some times the days seem to drag on, and then even within the same day I wonder where the time went. I have not done much. I ventured out of the house for the second time today. And I over extended myself. Sometimes I think I am feeling great, and then 20 minutes or an hour later I am exhausted and moving across the room or walking upstairs seems like a big effort.

The headaches are really getting to me. Debilitating, they sap my energy to do much at all. They seem to function as a barometer, receding when I am feeling stronger and surging without warning when I push too hard.

I am tired of being tired. I told Brooke it often feels as if a heavy wet blanket has been draped over me. I keep trying to focus on patience, sometimes I feel settled. Often I feel I have little patience for patience! I can’t get over this weird sense I have around time. I have what seems to be a cloudiness and fog lingering in my head, particularly my frontal cortex where I feel it most. I have an urge to be “making progress, taking action, moving forward” except I feel blank when I try to discern what actions I want to take. Perhaps it is a form of anxiety? In reality I feel just as strongly that I don’t want to take any action at all. I wake each day motivated to tick off some items on my “to do” list. Yet I can’t seem to pull the list together. Kinda odd for someone who has been making those lists daily for the last 15 years. And then the day seems to melt away, and by evening I am exhausted and hoping the headaches don’t come back. Someone asked if it was depression? I don’t think so, I am not depressed, sad, or withdrawn. I feel grateful, I enjoy the beauty of the day, and underlying my physical malaise I feel a twinge of excitement for some unknown adventure awaiting me.

The people I have seen or spoken to very kindly say I look or sound great. I appreciate their support. Yet it is weird, it makes it hard when a bit later I don’t feel great. I have to be careful not to judge myself, question the validity of how I am actually feeling. Chastise myself because I know there are many who are facing much harder challenges than me. Then I remember to give myself a break, my experience is just that…my experience. There is no specific standard  I have to meet. I have always been my own worst critic.

“This is a time for patience and careful attention to inner truth. Attempts to force a change, rather than allowing it to come naturally, will only cause misfortune. If one remains balanced, modest, and independent, good fortune will come to hand.”

– I-Ching

 

 

The hospital…

At the hospital, a day of intake, prep procedures, etc. a very different feel this time. Not sure why. Perhaps the reality of it all is settling in?

The nurse played us a 12 minute video of what the surgery and recovery would be like. Sobering. I don’t want this damn cancer and I certainly don’t want this surgery and recovery.

The hospital is an odd mix. Many, many sick people, lots of them elderly, occasionally you see younger patients. Chase thought it was a very sad place. She’s right. Lots of dour expressions, thousand yard stares, people who are fighting and tired. Lots of waiting and more waiting, so many people seeking treatment. I have been told that 40-50 year olds are the fastest growing cancer demo…where are they? I don’t see them here in large numbers…

Tomorrow this time I will be in post operative recovery, holes in my chest, tubes, beeping, and pain meds. 4-5 days in the hospital, I can’t wait to walk out of this place. Just want the next 5 days to go quickly and start the recovery.

I still cannot believe this is the path I must walk. How did this happen? Lung cancer? Will I ever get used to hearing that?

I am going to need to work really hard after the surgery to stay positive and keep my spirits up while I am in the hospital. It is not as easy for me as it is when I am at home, physically active, and surrounded by the love of my family.  Man I want to yell, kick and scream, and curse that it is not fair…and I imagine so does every other person in this hospital.

And I need to remember that I am lucky. As the PA in anesthesiology said I have one of the best surgeons in the world, a great team, and an excellent prognosis. And yet I don’t feel lucky.

This damn cold. 2 weeks of annoying sinus, of all the times to have a nagging cold. guess I will have bigger things to worry about tomorrow.

Going to miss the kids so much it hurts. I felt it today when I was at the hospital and they were here at the hotel in the pool. All I wanted was to be in the pool playing and goofing around with them.

Tomorrow will be a blur, a lost day. The following few days will hopefully not drag on to slowly. I just want to get through this. Man this sucks.

Keep thinking of the day I crashed on my mountain bike. I was feeling so good, and yet I had this deadly disease slowly growing in my lungs. How weird to feel so good and yet to be ill with what would eventually be a terminal disease.

Too tired to think about it anymore. Hoping to get a solid 11 hours sleep tonight, hopefully make some more progress on this cold and get as ready as I can for tomorrow. Saying good-bye to the kids will be hard.

Hard to imagine that only 5 weeks have gone by since I was diagnosed…time is a funny construct.

Thanks to all who have reached out. Please be sure to look after Brooke while I am on my back. She is strong, yet everybody needs love and support. She is human after all :-).

Ok that’s it for me for a while. See you on the other side!

Much love to all.

Andrew

Fear…

Fear: an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat.

I have had many people ask me recently if I am afraid. My surgery is in 4 days, and no doubt about it, it is a big deal. Thoracic surgery, incisions in my chest, the removal of parts of my lung and some lymph nodes. And from what we have learned from others who have been down this path, it is a big recovery. On top of that there is the usual surgical risks. Anesthesia, human error, and infection, the practice of medicine. Hospitals unfortunately are not the healthiest of places. In many respects at this very moment I face greater risks from the surgery than I do from the cancer. Of course this is a false argument, the cancer is the real threat, and is getting stronger every day. The surgery is the path to health and healing, yet requires some pain and discomfort to get there.

Based on the dictionary definition of fear it seems like a logical question to ask. I certainly have had some “unpleasant emotions caused by the belief that something is dangerous and likely to cause pain”. Guaranteed to cause pain is more like it! Yet given all of that I don’t feel that fear is the right description for what I have been feeling over the last few weeks, and especially over the last few days. Instead I am feeling more uncertainty than fear.

Uncertain: not able to be relied on; not known or definite.

I still struggle to wrap my head around the reality that I have cancer. Perhaps because I don’t have any symptoms? Perhaps I am in denial? Maybe it is just a matter of time? 4 weeks is just the beginning of adjusting to a new reality, a reality that in a single instant has changed the trajectory of my life. The dawning of a new perspective on what it means to live, and what it means to palpably feel the vulnerability and fragility of life up close and personal. I am resigned to the surgery as a necessary step in the process. After all what choice do I have? Let the cancer grow, pretend it will go away? And I have been down the surgical path before. This will be the 6th time in my life that I have been put under anesthesia. I am a relative veteran compared to some. Brooke has never undergone surgery, and in fact never spent the night in a hospital! I have the benefit of context and like any endeavor you have done before it is always “easier” the next time through.

Yet the uncertainty remains. Has the cancer spread (they will do a flash biopsy of some lung lymph while I am on the operating table)? Will there be post operative complications? How much of my lung will they remove? Will I be able to regain my full aerobic functioning? And God forbid could something go catastrophically wrong? The answer is probably a resounding NO to all of the above. And yet the uncertainty gnaws at the edges of my resolve and confidence. I am reminded of my past and the mountaineering instructors who would encourage me that if I was not a bit nervous and afraid then I wasn’t paying attention. Climbing has inherent risks, and many rewards as well. We rely on the equipment, we become proficient in the technique, and we trust our partners. The subjectivity of the environment and the mountain can never be fully mitigated. Much the same with my surgery. We have done everything we can, have an amazing team in place at one of the top hospitals in the world, etc. The rest is in God’s hands.

So am I afraid? Yes I would have to acknowledge that I am. Not every minute, in fact far less than I had expected. Yet it is there on the margin, a thin ribbon of concern.  Certainly there is anxiety to be stepping into the void, yet because of the paths I have already walked in my life, I know I have the mental, physical, and spiritual strength to walk across this pit of fire. Instead there is a different type of fear, focused more on a perceived threat. And this “threat” nips subtly at my consciousness. A concern that I will come through this, heal, and quickly forget the lessons that have unfolded for me in the last 4 weeks. The benefits of cancer; the intimacy and connection with myself, family, and friends. That when I am cancer free and healed I will once more step into the fog of being unaware. Succumb to the fiction of a perceived future. The enticing lure of ambition and external achievement above all else. The trap of gauging self worth based on external validation. The fantasy that time, health, and “tomorrows plans” are limitless.

I want to remember everyday from here forward what I so acutely feel today – that everyday is truly a gift. A gift to be cherished, shared, and not wasted. And I want to live my life in gratitude to all of those whose love supports me, and to whom I can support with my love. I want to stay awake.

Love yourself and be awake –

Today, tomorrow, always.

First establish yourself in the way,

Then teach others,

And so defeat sorrow.

To straighten the crooked

You must first do a harder thing –

Straighten yourself.

You are your only master.

Who else?

Subdue yourself,

And discover your master.

– Dhammapada