Thursday, June 02, 2011

waiting

My jumbled up, unedited thoughts this evening at the end of a long week of waiting on biopsy results written as an update to friends and family and copied directly here.

This last week has been a long one. It is jarring to switch from a week filled with daily tests and scans to one of simply waiting. But once again I must thank each of you for enduring the wait with me. No, it isn't quite over yet. I do not know the results of the bone biopsy since, as expected, I will have to wait for the appointment with my oncologist tomorrow. However, I have endured this week and made peace with myself in terms of being ready for the results with the help of this community standing behind me, beside me and with me as I absorb the possibilities and contemplate my choices. Whether you are one who has reached out by text, email, phone call or card or simply by carrying me in your heart, I am buoyed by you. A lesson I feel I will learn over and over as you help me fight my cancer, I believe, is that a shared burden is a lighter burden. . . sometimes even to the point of forgetting it is there.

After the initial shock of last week's news that my relatively mild initial diagnosis of stage II breast cancer could be upgraded to the alarming diagnosis of stage IV metastatic breast cancer, I forced myself to push reactionary thoughts of death and dying to the back of my mind. I was assisted in this effort initially by a visit from my brother and his 8-month old daughter, as I mentioned in my last update. Other distractions presented themselves via dinner invitations, phone calls, shared meals and another Broadway show.

But for me, nothing quells fear like knowledge. In between welcome distractions, I researched and studied and asked questions of people with experience. I now have a better understanding of metastatic cancer and treatment options. I understand that metastatic cancer is a chronic condition that can be treated and attended to but not necessarily cured (thus, the minuscule 5% chance of it being eradicated by chemotherapy). I have questions ready for my oncologist and I feel more prepared to make a decision on how I want to proceed.

That being said, last night the stress of the wait manifested itself through excessive fatigue and headache. I went to bed without setting an alarm and endured a restless night and could not bring myself to leave the confinement of my home. I needed restoration, the kind of restoration that, for me, comes from solitude. I spent the morning continuing to devour the book "The Emperor of All Maladies" by Siddhartha Mukherjee, a biography of cancer. Reading the books helps me feel like I am somehow helping myself - again, research and knowledge, regardless of the actual information gained, is a comfort. The oppressive humidity that has hung over Manhattan these last few days was blown away so I ventured out for a mid-day 2-mile run along the Hudson River with the wind at my back on my way out making me feeling fast and then at my head on my return leaving me somewhat discouraged. The run, however, helped solidify some decisions that had been percolating.

A friend had called just before I left and as I explained to her how I questioned whether I should dive in and proceed tomorrow with chemotherapy or if the biopsy is positive, should I be more deliberate and seek a second opinion. Second opinions are supposed to be reassuring. They are used to confirm a course of action or to offer alternative views and possibly, in my case, a third or fourth option for treatment than the two I am currently facing. But the small steps I have made in that direction over the last few days have struck me in the gut. I have an oncologist I trust. She spends a significant amount of time explaining everything to me. She has emphasized that she is the person I should call with my questions (and I have) and she is accessible. She levels with me. She gives me facts, explains the gray areas and levels with me when I ask a question that is outside her understanding. She follows up. Not to mention her excellent credentials. All of that matters.

But that isn't why I do not want to take the time to seek a second opinion. What gives rise to waves of panic is the idea of further delay. Since April 18th, the day my lump was first detected, I have had this sense of urgency propelling me forward from one appointment to the next. And I have been incredibly fortunate in how quickly doors have opened for me, appointments made, results and consultations given. I have read accounts online of this process stretching out for months for others similarly situated. At each step in this process I have felt confident in those doctors, nurses, techs and assistants who I have encountered. I still feel that way.

Throughout my life I have made decisions through research, careful analysis of facts, meditation and in the end an indescribable propulsion toward an answer that cannot necessarily be called a decision but is more action. These decisions can appear impulsive to an outside view and may not always be the "right" choice, but the action itself is always a relief. I do not fair well during interim decision periods where "wait and see" is the only course of action. Therefore, unless I am kicked in an entirely different direction by my subconscious in the next 12 hours (a phenomenon that has happened), I have decided to take action regardless of the biopsy results and move forward with aggressive treatment as soon as possible - hopefully starting chemotherapy tomorrow.

Lest you believe my own impatient nature is causing me to cast reason aside, the other outstanding factor tipping the balance is my emotional state. As many have noted, I have managed to stay positive and upbeat throughout this process. This is not a front. I have faked positivity in the face of crushing challenges in the past, but not now. Right now I am afraid of the worst case scenario coming to life but similarly to that long week endured waiting for the results of my breast biopsy a month ago, I feel powerful. I have endured hard things. I have conquered difficulties. I am inspired by others who have done the same and I feel as difficult as the months ahead may be, I am more ready now than I have ever been. I have family and friends who are praying for me, thinking about me, reaching out to me - ready to help carry whatever piece of this burden I am willing to give away.

But for me, if I have nothing to direct this fight and grit and attitude towards, I will feel defeated. Every time I think of choosing the second option given by my oncologist - taking Tamoxifin to control or shrink any metastatic growth - I feel my resolve slip. It feels passive and slightly defeatist. At my age and with all the armor I have gathered to endure the coming battles, I cannot fathom reducing the fight to a pill and giving up even the slim 5% odds of success. Depression would surely follow.

I will send an update as soon as possible after I get my biopsy results. Thanks again for your continued support and for reading my somewhat jumbled thought process this evening.

4 comments:

Emily said...

We're all with you, Alyssa. We'll help shoulder this burden. All our thoughts are with you.

Jen said...

Hang in there, and stay strong. You have an army behind you!

Christy said...

I'll be thinking of you today

Kelly S. said...

I don't know what to say except that what you write and how you write it touches me.

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