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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~

November 14, 2015

I'm so fancy~

The past few days have been challenging – my body aches and my fatigue is marked. I have been allowing myself to rest when needed and giving myself a gentle nudge to leave the house when needed. My week started with a bang! Monday’s I have my acupuncture appointment; I travel to Albany for my body treatment, which is healing and relaxing. I was getting settled into the acupuncture room when Mandi Schwendiman (acupuncturist) and Sabrina (administrative assistant) gleefully entered the room holding a bright yellow box.

Mandi has seen me during my highs and lows – she has been treating me over the past four years. This year, I have been seeing her weekly, she has been my confidant, has laughed with me, carried my secrets, comforted me when the tears flowed, and listened as I shared my soul. My insurance benefits for acupuncture only allow for approximately 5-6 acupuncture sessions annually; Mandi has been seeing me weekly even though my insurance benefits ran out a long time ago. She is a special soul and I am grateful to have her in my life. Returning to the yellow box. A smile graced my face, with anticipation as I opened the box. Before me was a pair of the most flashy, sparkly, size 5, 5 ½ inch heeled shoes! So why the shoes? There were many weeks when I headed to acupuncture appointments, barely able to walk due to the side effects from chemotherapy; I would hold the stair handrail tight as I walked up the steps to the clinic. Sometimes the fatigue was so great, after entering the room, I would crawl upon the table to lay down. It was during these times that I spoke with Mandi of going to the market and the need to begin riding the electric scooters. There I was roll’n up and down the isles with my mask on, baldhead beaming, and people staring! Mandi decided then that I needed to have increased fun at the market and be more “flashy” as to own my new mode of transportation – her idea, a pair of extremely high heeled shoes! I laughed when she presented the idea, but she was serious. I reminded her of my tiny feet, that of a third grader, size 5 on a good day, not to mention they are tiny, fat, and thick size 5 feet. This did not detour Mandi from her mission, she pressed forward with finding my glamourous shoes. Her idea was to walk into the market in flip-flops, secure my electric ride, reach into my bag to get my flashy high heels, put them on, and proceed with my shopping. Fantastic, I know. I pealed the tissue paper back and pulled the sparkle shoes out and put them on; the shoes actually fit. Then, with the assistance of Mandi and Sabrina, they helped raise me to my feet. I must have looked like a baby deer trying to walk for the first time. Mandi reminded me the shoes are NOT for walking. LOL

The good news is that I am no longer requiring the use of electronic transportation at this moment.

Tuesday was an eventful day. I was up and ready to go at 9:00am, I was heading to Newberg to see my friend Leslie. A couple years ago, Leslie taught me how to make jewelry and on this day, we were ready to make some earrings and necklaces. I was so excited, I love making earrings and of course, I love to laugh. I stayed until her kiddos Nicky and Ab’s got home from school; I love those kiddos and always have a great time with them. Having good friends that support me, share laughter and tears, and love you even though, even when … those are the people I roll with. I am beyond fortunate to have lovely devoted friends.

This week I received a special package from a class of 6th grade students. Inside were beautiful cards, notes, and drawings. The students offered words of encouragement and support. Several of the students planned with their classmates to all wear pink October 23, 2015; this was the day the class wrote the letters. It was uplifting to read the notes – I responded to each of the students and just sent off a return package that included a little treat for each student. To have a group of students, that don’t know who I am, willing to share their hearts – this is some pretty cool stuff.
On my rough days, I can always dig deep and find inspiration; all I have to do is look through my treasure chest of letters. The box overflows with letters from friends, family, and those I have never met. I am humbled by all the love and support.

Somehow, everything seems to always work out.

I continue to trust I am where I am supposed to be.

I am determined to not crumble under this terminal diagnosis.

I am determined to bring healing and balance to my body.

I have more work here to do, so I am not ready to go.

I continue to speak into the universe asking for a healing miracle.

Please consider donating to my online fundraiser:

Fundraising Link:

Today, I am hopeful~

November 8, 2015

A little this and a little that.

As my mind continues to bring memories back, I have been reminded of some funny moments that I would like to share along with a quick health update.

Flight from Portland to Houston:
Leslie and I were so excited to experience traveling first class, in style. It was early in the morning when our flight was departing but our excitement fueled our alertness. As we boarded the plane, we noticed people were sitting in our seats. We both looked at our tickets to make sure we were on track – you know that quick panic prior to settling into the correct seat. For a moment, I thought perhaps we really did not have first class tickets – as though it was too good to be true. The flight attendant began talking with the seated traveling companions; they presented their tickets noting Row 22! As they relocated, there was some mumbling about traveling and airplanes. Leslie and I chuckled a bit, perhaps they thought they were flying Southwest, grab any seat you can! Thankfully our seats where reclaimed by its assigned owners – Leslie and I.

Flight from Houston to Portland:
I so want to share a story, but again Leslie would never speak to me; let’s just say there was quite a bit of chaos prior to boarding. As we settled in we were both sweating like freaks! I grabbed an ice pack and handed it to Leslie – she then quickly ordered an adult beverage and I took a Xanax.  Life was good. As the flight proceeded, I began having hot flashes, I was waving my church lady fan rapidly to gain some comfort as the sweat rolled off the back of my baldhead. A woman sitting across the aisle from us stood up and grabbed a portable fan out of her bag and handed it to me. THANK YOU! Nearing the end of the flight, I returned it to her – then shortly after I had to break out my hand held fan – I was hot flashing again. The lovely woman grabbed her fan and handed it back insisting that I keep it noting, “I have been there before”.  Awe, it’s about the little things…compassionate people, fans, and fresh air.

Hair falling out and hair coming in:
Of course, my hair fell out; I have been down this road before. What is new this time is that all my eyebrows and eyelashes fell out too! My first go around with chemotherapy in 2011 thinned my brows and eyelashes, but this time it claimed them all. I know my hair is growing back; I am kind of “fuzzy” right now. What I was not expecting was the resurgence of facial hair. All those years and money spent on electrolysis and laser hair removal treatments – washed away. The man hairs on my chin and upper lip are coming back strong, long, dark, and coarse! What the heck? My eyebrows are equally as wild, circa 1980s. I was so self-conscious about my eyebrows I went to the salon to have them waxed down a bit. While at the salon, I learned how to apply false eyelashes – that’s a bit tricky but I am getting better at applying them each day. Hair is clearly on my mind, I had a dream the other night that within a matter of hours my pubic hair grew back in full force! LOL This hair growing back thing is like something out of National Geographic deep jungle addition; I am bracing myself for the impending grow back on all areas of the body. Where is the bright spot, well I am counting on my hair growing back curly, just like last time. I know the curls will eventually leave, but they are super awesome for growing your hair back. Please, please, please, bring back the curly hair!

What’s new and what’s next:
After about 15 days on my new supplements (protocol), I had my blood drawn to check my tumor marker counts – the good news is that everything is holding steady for the moment! I am thrilled about this, yet the reality of the doctor’s diagnosis sits in the shadows of my joy. My increased energy has allowed me to resume researching clinics outside the US that offer treatments not available in the states. I found a clinic in Frankfurt, Germany offering several modalities I have used along with others I have researched and wanted to undergo – like stem cell and oxygen treatments. For now, I am excited about my bloodwork, increased energy, and possibilities to regain health in Germany. Time will tell what the next steps will be for me to continue a healing path.  

Cape Kiwanda Rock Cliffs - where true beauty unfolds.
I really wish I could go back to work but I know that my journey right now is to take care of myself and hopefully experience a healing miracle. I have been spending time with friends and family on the days I have energy and just hanging out at home when my body tells me to rest. This current space is a difficult one to sit in, for both Curtis and I. At times, we both become overwhelmed with emotions – it is not easy. The tears flow more often and sometimes comes without notice. I am determined to beat the odds and return to full health. I appreciate everyone that continues to support my family, send prayers, and positive healing thoughts my direction. There is a saying that one quickly learns who your real friends are when there is a challenge or tragedy – they are the ones that show-up. I am truly blessed to have so many people rooting for a healing miracle and loving on my family. Thank you for being a part of my journey! I enjoy those that continue to send letters – I enjoy writing, as it is very cathartic. I too am getting to know people on a deeper level along with cultivating new friendships. So keep writing – I send a handwritten response to everyone.

Send letters to:
Christina Garrett
PO Box 192
Philomath, OR 97370

Today, I am hopeful~