"What is important to you"?

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I have been hearing...and listening...to a great deal of frustration from friends and family. My cancer journey is confusing and scary for them, understandably. Equally understandable is their frustration and confusion as to my choices in treatment and management of what has now evolved into a chronic disease. I am trying to address each of those I love and care about individually. To reassure. To help them, if not understand, to at least accept. Below is a compilation of several letters that I have written to some of my loved ones. I share them here, first, because this is where I process my cancer journey. Second, because I hope that through the venue of my blog understanding and/or acceptance will come. I have to hope. WARNING: Content May Contain Concepts of Emotional Sappiness.

Dear Loved One:

I am going to start this letter with the single most important message I wish for you to take away, and that is that I love you!

Also, you need to know that you are important to me, and I am listening very closely to your concerns. I know that you are worried. I feel deeply and appreciate your concerns...truly. 

   

I know that the prevalence of pink & pretty media coverage regarding breast cancer makes it seem that great leaps and bounds in treatment options are available. I also know, from experience, that when Susan B. Komen and their ilk speak about "cures" and "awareness" they are speaking only of early stage breast cancer. That is, breast cancer that is confined to the mammary glands, and which can be "curable" but only to a certain extent. Susan G. Komen is not about advanced stage breast cancer.

My cancer was initially discovered when it was already late-stage; and is of an infiltrating / invasive nature. Remember, this was despite years of mammos misidentifying the tumor growth solely as fibrous breast tissue. When breast cancer has metastasized, i.e., moved out of the mammaries, treatment options are few and most are longshots in achieving a positive prognosis. Regardless, I have not been sitting idly. Nor, should you presume that I am acquiescing, giving in, admitting defeat, etc. to a chronic disease.

Yes, it is true that the MD community is a bit pessimistic about my situation - save, interestingly, my oncologist who is excitedly on-board with my current protocol. Well, maybe not excited per se, but at least supportive. You must trust me, I have researched and continue to research extensively my current treatment plan. The MD community (save for my oncologist) would like to go "full guns" and "aggressive beyond measure" (these words from the radiation onc). And, according to same radiation onc, going "full guns" will only give me a 20% chance at a 5 year survival. You must remember: there is a vast difference between survival and living.  

The surgical onc clearly does not want to do the surgical "full guns" and "aggressive beyond measure" surgery -- a full axillary nodal dissection. Why?  Because  it is "messy" trying to avoid all the clusters of nerves, blood vessels, and arteries. And, she acknowledges that there is no difference in the 5 year morbidity with women who have had a full axillary nodal dissection, and those who don't. She does, however, give me a 25-30% likelihood of long term nerve damage.

I cannot articulate the appreciation I feel for you own efforts in researching treatment alternatives for me. Your own stubbornness and deep caring are two of your endearing qualities. I also appreciate the emotional difficulty you are having in sharing your research findings with me. Nothing about cancer is easy. Unfortunately, your research brought nothing new or surprising. I was aware of the challenges with my prognosis. Rightly or wrongly, I did not feel that I should dump all of the "lovely" news on you in one dose. It wouldn't be fair to you or me. Why? Because I am still coming to terms with what the medical community is saying to me. I am not prepared, yet, to be a strong shoulder for you while I answer your questions. Selfish, yes. And unapologetically so. I am getting good at being selfish these days. 

As I shared with you, the radiation oncologist here in Arizona -- who, btw is touted as the "go-to radio-onc" (imagine me raising an eyebrow of doubt) was not as forthcoming as the one you communicated with. Radio onc's 20% chance of a 5 year survival was predicated on me first going through the surgical "debulking," followed by an aggressive protocol of  "clean up" with broad-based radiation of the neck, shoulders, axillary and chest wall.

I asked radio-onc how long after such intense radiation exposure would my body begin to show signs of damage to my heart and lungs (predictably leading to heart and pulmonary failure). She would not answer.

My individual situation...my reality that I have to live with, is that I must continue with life-as-is. I am fortunate that my work is something that stirs my soul, because my working is a direct and palpable benefit to my family. Family is what is important to me. Indeed my kids come first. I will never be selfish when it comes to their immediate and long term futures. Each and every decision that I have made over the last 25 years has been about family and building a life and future for my children.

I will also not allow this chronic illness to turn my family into another "recession statistic" -- funneling funds into a medical industry that holds no hope for me. I secured Husband's agreement on that one. What that means is that I will not hurt my family financially while chasing medical pipe dreams. The decisions and treatment protocols I have decided upon (with, again, the surprising support of my medical onc) are to help me manage my chronic illness and still have a quality of life with my children, now. 

I can honestly say, I am feeling better this week - week 3 of my protocol. I do "suffer" immense nausea and fatigue after the high dose vitamin c IVs, but it passes within an hour or two with the help of lime slushies.

You will have to trust me. Your trusting me is important.
The health (emotional and physical) of my children are important to me.
Making sure my children have a competitive edge and a fighting chance in this world that seems like it is being turned on its head is important to me.
Being strong for my children, while I can and when they need me now, is important to me.

Dear-heart, we are all going to die at some point, no? That is the life-cycle. It is also very possible that the cancer may not be what kills me. It is as likely that a reckless driver on the interstate, or the space debris currently falling to earth is is what causes my death. Old age may be what finally takes me. The point is, none of us know with any certainty how we will die...only that we will.  Because of a bizarre turn of events, I am "fortunate" to have (potentially) prophetic knowledge of my demise. Embracing my mortality on a daily basis does color my daily responses and perceptions. 

What is important to me is that the time I am here is spent with meaning and with as many quality moments with those that I love. Giving up sitting on the sidelines at my son's soccer practice, so I can chase a possible treatment far away from him, pales in comparison. Attending my son's concerts; making his lunch in the morning while quizzing him on science vocab or math problems; reading with him at night snuggled in his bed together -- I would never make a choice that would steal those moments away from me, now. These moments cannot be recovered, and are real now. The future, under the best of circumstances is unpredictable. 

Not being able to have my girls reach out and share with  me all of their daily joys and sorrows (18x a day -- really!) would decimate me emotionally. Being a sounding board for the volatility of their developing adult-hoods is the reward of parenthood. My girls are growing up, now.  And there is Husband. He has been my BFF and "work in progress" for 25 years now - and I have not finished with him as yet! He is not getting out of this marriage that easily, especially when he is yet to be housebroken.

Missing all of this while I am here in the moment feeling strong and relatively healthy, well, that would kill my spirit long before my body would crumble.

~TC