November 23, 2015

It took over a year but, it is done

Medicine Wheel made for me  by Rita Baxter
Ever since I underwent the bilateral mastectomy late last fall, I have been carrying around many post-surgical thoughts, due to the poor outcome. Although a bilateral mastectomy is standard of care “SOC” for those with my diagnosis, instead, earlier in my diagnosis I chose to have a lumpectomy – and then several additional lumpectomies as tumors returned. Late spring 2014, the surgeon was unable to get clear margins after removing a newly formed tumor – this led me to seek out my Texas medical team for their opinion of what they would recommend: removing additional tissue or a bilateral mastectomy. The Texas oncology surgeon advised, “It is time to do the bilateral mastectomy”. I was a bit tired of having my graduate school plans interrupted by multiple lumpectomies, so I thought I would go ahead and heed the treatment advice having both breasts removed. And so I did. Since that time, I have had a resurgence of tumor cell activity reaching over 800% in number only one month after surgery, clearly the surgery kicked off a shit firestorm of cancer cell activity. Now I have have a terminal diagnosis. But let me back up.

After consulting with the Texas team, pain management was discussed in great detail due to multiple allergies to pain medications, and the desire to reduce post-surgical suffering. While I was in the hospital, the reconstruction surgeon was the admitting doctor – so he was in charge of my hospital care. After surgery, I was left suffering without the agreed upon morphine drip, even after the nursing staff contacted the surgeons office, he refused to prescribe morphine and instead ordered a shot of a different medication. I refused the shot for two reasons: I did not want to experiment with an unknown medication that may cause an allergic reaction and frankly, I had an IV and did not want a shot in the ass. The result, I was left lying in a hospital bed suffering. After several hours of incredible pain, Curtis was able to fill a prescription of oral morphine the oncology surgeon had previously written and I began to self-medicate to make it through the night until I could be discharged the next morning.  I remained in Texas for about two weeks before I was well enough to travel back to Oregon.

When the bandages came off, I was less than pleased. It was a hot mess. One breast larger than the other, partial areolas remained on each breast – it just looked like a sloppy mess. As time went on, I thought perhaps things would settle in and look better. This did not happen. I wanted so badly to schedule a meeting with those two surgeons to show them what they had done to my body – treated it so poorly, surgical procedures sloppy and incomplete. I felt incredibly betrayed by these two individuals. I trusted them with my body and they handled it like a random carcass, this is evidenced by the outcome.

So over the past year, I have been considering what to say to them – how to convey the results of what they left behind. I considered recording a video and sending it to them to insure the essence of what I was saying was clear. I considered not doing anything. I considered writing them a letter. I considered posting my story on their review sites. Then the other day, I finally was able to know what I was going to do, I would send a letter along with two photographs – one is post-surgical after all the drains and most bandages came off and the other was take this month. I authored a short one-page letter addressed collectively to both surgeons, here are a few excerpts:

“My body was left mangled and deformed; you both let me down! I trusted you with my body, I was not looking for perfection but what was delivered is what I consider sloppy, rough, and uncaring surgical execution as noted in the photographs.”

“I wonder if you mistook my lighthearted positive demeanor to signal, I would accept subpar results.”

‘I have written this to both of you because I am not sure exactly which surgeon was in charge of which part of my surgery. I want you to both see your work and consider the lack of quality and understand how this has impacted me not only physically but also emotionally. I too hope that during future surgeries you will always remember that your patients are putting their trust in you to handle their body in a professional, delicate, and loving manner.”

After I wrote the letter, I experienced a sense of relief. I had waited so long to express my thoughts of what they had done to me, the remnants of what was left. The reflection in the mirror spoke loudly- the result quite devastating. I left the letter to rest upon my nightstand for a day. The next morning, I reread the words I wrote and decided that in its simplicity, it expressed exactly what I had hoped. My hurt and pain, that was written in the letter was now wrapped in the safety of the most beautiful envelopes addressed to the two surgeons. As I slid the two envelopes into the mailbox slot, I said aloud, it is done.

I am not clear as to why it took me so long to write this letter – I write often to express myself. I too am reminded of the chaos and damage that was done to my body every day I see my reflection. I suppose I wanted to come from a place of love rather than anger, although I do not consider myself an angry person. I think I have not had an expression of anger, for the most part, during this cancer journey because I have the awareness that behind anger is something else, so I skip the anger and get to what is really going on. Typically, it is deep hurt, betrayal, or disappointment. Nevertheless, it is done. I feel a bit lighter and free as I was carrying around something that was not mine to carry; it now rests in the hands of its rightful owner and what they choose to do with it, well that is on them.

I want everyone to know that getting a bilateral mastectomy is traumatic to your body and soul. As I have said too many of my friends, it is not cute. I offer these photographs demonstratively to show the butchering that was done to my body. This truly is a cautionary tale to encourage everyone to identify the right surgical team, double check, do not rush decisions, do not trust the recommendation of others, and most importantly trust your own intuition. If it does not feel right, even if you do not know exactly what it is that feels off, stop and allow yourself time to figure things out.

                         November 2015

                         After Surgery 2014

Shifting gears, in a couple weeks, I am traveling to a clinic in California called Infusio for a consultation. The flagship Infusio is located in Frankfurt, Germany and offers many treatment modalities not available in the United States. They recently opened a state side clinic, so I am looking forward to meeting with the state side doctors to find out what a treatment plan in Frankfurt will look like. After reviewing my condition,I am hopeful the doctors agree that I am a good candidate for the 20-day cancer treatment at their Germany clinic. I am excited about the possibilities! I know I am sitting with a terminal diagnosis, but I am not ready to give up on bringing my body into balance so it can fully heal. In a future posting, I will write more about the particulars of the clinic, one exciting treatment is that they grow your own stem cells and implant them back into your body. Of course, this clinic is very expensive but if you measure the costs of the clinic alongside my recent chemotherapy and treatments, the clinic becomes very reasonable in price. I am not sure how I will pay for the treatments but I am hopeful everything will work out. Here is the thing, this is my life. I am not ready to die and if there is a chance that I can find healing through reasonable means, well, it is totally worth it. Please send endless good thoughts of healing peace and prayers my direction. I have a feeling wonderful things are about to appear in my life.

Please consider donating to my online fundraiser:

Fundraising Link:

Today, I am hopeful~