It has been nearly a month since my last blog post. It does not seem possible that January is almost over. My mother always said that the older one gets the faster the years fly by..and once again, she was right. She is almost always right.
January started out with many follow-up appointments and meetings. I went to a support group for breast cancer survivors and patients, called The Pink Magnolias. It is really interesting to meet people for the first time and have this crazy thing in common. There is an unspoken energy, love in every handshake and glance. The stories of survival are truly awe inspiring. One lady was diagnosed in 1956. She never received Chemo or radiation, and she is not shy about telling everyone that God alone cured her.
I went to a group called "Look Good Feel Better" where I learned how to apply makeup, tie a scarf out of a t-shirt, care for my skin during chemo, ect. I liked the facial part, but it was very difficult to meet ladies that had already been treated for breast cancer, and were being treated again because the cancer had come back. For those that have read this blog and know me, know that this is my greatest fear. The women I met were especially brave and resilient. I, however was not feeling brave and resilient.
I had my first appointment with the medical oncology team that will be handling all of my medications from this point on. Dr. Pugliese (BC surgeon extraordinaire) picked Dr. Keaton for me, because of my need to know facts, stats and un-sugarcoated news. He was very nice. He and his nurse covered all side effects that I might endure. The list was long and included nausea, vomiting, hair loss, numbness in the arms/legs, BONE PAIN..
The most upsetting news is I cannot eat sushi or enjoy pedicures (salon style) until I am finished. Of course, I can do my own pedi if I can find my numb feet and bend my painful bones to reach them. UGH.
Mind over matter, mind over matter, mind over matter........
Tomorrow, I will have my port-o-cath placed in my chest, just below my collar bone on the right side. This is a small device that can be accessed with a needle, and my infusions will be delivered right into my large vessles near my heart. They can also draw lab work from the port, so I will only have to endure 1 stick. I will keep this in for up to 2 years.
I will receive 6 rounds of chemotherapy, 3 weeks apart. My infusions will be on Thursdays beginning this week. Each Friday following the infusion, I will receive an injection to help my blood counts rebound. I will also receive a medication called Herceptin, which is a targeted medication for my type of cancer. I will get it for a solid year, every 3 weeks.
Knowing my chemo start date has given me some time to take charge of my own situation a bit. I cut all of my hair off a couple of weeks ago. I have eaten sushi. I am going today for another pedicure. Last week, I was able to accompany my family to Orlando for some fun. Ellyott and I enjoyed a Justin Bieber concert from a VIP catered Box seat. Christian's Aunt Janelle and Uncle Mack showed us a diva Disney,Epcot, MGM experience complete with private tour guide and line jumping privileges. It was AMAZING!
Today, its back to reality. I am getting myself prepared for port placement and my first treatment in the next couple of days. So, all your prayers are coveted. Please pray for financial provision, because I am still not cleared to work. Please pray for both of my grandmothers who are recovering from a car accident. Please remember to also pray for the gals I met in the makeup class, who are facing repeat treatment, and everyone else who has been touched by this horrible disease.
Although reality is tough sometimes, we are never alone. We are all in this cancer fight together.May we all be reminded to cherish each second and to love one another.
Well, the holidays are over. Decorations placed back in the attic, tree in the box, bills rolling in, and children headed back to school. I have been sad to see it all go, because I feel I was absent for most of it. I was able to go to Christmas Eve service at church, but the remainder of my holiday season was spent in my cozy recliner. I am so thankful for all of the food, presents and visits I received while hanging in my recliner.
It has been three weeks since my surgery, and I am feeling better. I still experience muscle spasms, limited range of motion in my shoulders, and generalized weakness from sitting for so long. I went yesterday for a follow-up appointment. Dr. Lynn, plastic surgeon in charge of my reconstruction says I am healing fine. My drain tubes have finally been removed!!!! This means, I can leave the house and take a shower. My poor family and friends have had to endure my scent for 21 days now. I have had to endure my scent within the confines of my recliner. Truck stop baths with a wash cloth and soap only remove so much. We did, however, make a miraculous discovery during all of this.. So if you find yourself unable to bathe for a number of days, remember this story.. Christian is a hunter and uses scent removal soap before he heads out into the woods, so deer will not be alerted by his smell. This soap is the only kind that will remove the type of olfactory torture that I was putting out. The name of this product is ...are you ready?? DEAD DOWNWIND. Can you believe that?? Christian emailed the company to thank them for returning a smidgen of self esteem to his disfigured, stinky wife, and now they are sending free products in the mail. Dead Downwind is a great company. (my product plug is over).
The doctor says I still have to take it easy, I cannot drive for at least another week, and I cannot return to the gym at this time............(dramatic pause).
I finally received a complete pathology report, and unfortunately, we did not receive the news we were hoping for. My type of cancer is what Dr. P calls triple positive, which is quite rare. I have estrogen and progesterone positive tumor cells which means they are fed by estrogen, so it is treated by taking estrogen blocking meds for 5-10 years. The side effects are mild hot flashes and adam's apple..just joking about the adam's apple. The third positive is the HER2. This is a mean scary type and is treated by chemotherapy.
We had hoped that by being more aggressive with the surgical intervention, we might get lucky and be able to skip chemo, but now we know that it cannot be avoided. This bad news came on the heels of my good trip to Dr. Lynn, so once again, we are roller coaster passengers on the scariest ride of them all. I am all over the place with my emotions right now. The chemo news has really set me back a few steps. But I will do what has to be done to ensure that I can grow old and see my kids grow old.
I know everyone responds to chemo differently, but I am super sad about losing my hair. I have not always loved having this fro, but it has been that physical quality that sets me apart. I will mourn it more than losing my chest. I know it will grow back and its not the hair that makes the person, but this really sucks. So, if anyone has any head covering suggestions, I am open.
Last Friday, my husband's grandmother Annette, passed away. She was a breast cancer survivor, and the purest soul I have ever met. She loved with her whole heart and will be missed by us all. Please pray for Christian and Katherine (MIL) and Annette's other children and grandchildren, as we mourn. I pray that I handle life's struggle with grace like she did, and we can all honor her by loving others with our whole heart.
Thanks again for all the words of support and prayers. Please keep them coming as we enter into a new year and a new phase of treatment.
I love you all.
Well, I am 10 days out from my surgery. I have to say they have flown by. I guess it is a good thing, but it is weird to lose a whole week to a recliner. My pain is to a bearable level, and I can stand up and walk around all by myself. It really is crazy having to ask for help for everything. It is the little tasks that I took for granted that have been the hardest , for example...using a q-tip, putting my afro in a ponytail, washing said afro, pulling my pants up, ect. Anything that requires lifting, bending, reaching, is off limits.
Another thing that is off limits???My shower. I cannot soak in the tub, rinse in the shower, take a quick dip, unwind, splish splash..nothing. Its just me, my trusty assistant Christian, and a wash rag. I think this is a mean thing to do to someone who is confined to a recliner with herself. Christian and I fashioned a shower poncho out of a 30 gallon trash bag so that he could wash my hair. Maguyver(sp) ain't got nothing on Frazier. I am here to tell ya.
I think I have handled the body image part as well as I can. It was hard to look at myself the first time. I was afraid to take off the ace bandage at first. It was like a security thing. The scars are about 6 inches each and run horizontal across the area. There are still steri-strips on the incisions, so I can't see the actual scars until those come off. There is no nerve sensation in my armpits, or on my chest. I feel immense pressure from the inside where the tissue expanders were placed under the muscle, so the majority of my discomfort is muscle spasm type pain in the front of my chest. Each day it gets better, and each day, I am more comfortable in my new skin. I still have 4 drains in place on each side, under my arms to reduce swelling and fluid from collecting under the skin. These drains are my arch nemeses and must be destroyed. They each have a collection bulb at the end that resembles a grenade. I was supplied a little vest to hold my drains which comes in handy, but gives me a shape as if I am wearing a utility belt under my PJs. Not cute. Once the drains are removed (hopefully 12-26), I will be able to shower, reach over my head and wear jeans. Such a strange Christmas wish list...
I know my body will never be the same, and I know my life has been forever changed. Over the past month, so many beautiful strong women have opened up to me about their journey with breast cancer. They share their stories, and hope and always a tear. There are so many of them. We are everywhere..all colors and ages..It is crazy. Although I didn't choose this path for myself, I am honored to be in the company of so many brave girls. I hope when I am healed and cancer free, I am brave enough to help someone else..There is a Jeremy Camp song that states.."we will overcome by the blood of the lamb and the word of our testimony". That is so true.
My family and I are so thankful and humbled by all of the flowers, cards, gifts, sweets and fruit we have received. Please slow down and enjoy this holiday time with your families. Remember Jesus. Hug your loved ones tight and long...
Be nice to people you come across, you never know what's under their scarf.
I think I have handled this thing well until now. I have tried to think things through, weigh options, pray and process one thing at a time, but right now, I am a hot mess. One more day.
Let me start by saying how moved I am by all the cards, emails, flowers, pajamas, cookies, texts, posts, likes and prayers I have received. I am so blessed.
Breast cancer is a scary thing. There is nothing like hearing someone say "You have Cancer." There is nothing like saying out loud.."I have cancer." Something about that 'C' word...I would be lying if I said that I have not given much thought to my own mortality. I have one daughter I want to marry off, I want to see Owen graduate from college. I want to be old and gray and live on a beach somewhere with my man..I have too much to do. I still have to see the redwood trees...I want to go to New Orleans and take pictures... I haven't learned to play the guitar... Most importantly, I have some apologies to give out.
I know I am going to make it through. I know I might still have to have chemo or radiation, and I know I have a >90% chance at surviving the 'C' word, but I only have 1 ONE chance at this life. I want God to be pleased. I want to always think before I speak. I want to apologize when I am wrong, and I want to make people laugh and make my parents proud... I will learn to play the guitar, so I can sing "Me and Bobby McGee". I hope none of my family or friends have to go through something like this, but my new perspective is a blessing.
I report to UH tomorrow at 7:30. My surgery is around 11. Please pray for us as we start this leg of our journey. Please pray for my children and Christian, they are scared. Please pray for my nurses, as I am a difficult patient. My parents and Jake too.
I cannot believe this is the first day of December.
I cannot believe it has only been 16 days since I received my news.
I cannot believe I am 35.
I cannot believe I am 2.5 years away from 20 year reunion.
I cannot believe I have only 24 days to get this Christmas thing together.
I cannot believe I only have 11 more days with my body as I know it.
We met with the plastic surgeon last Wednesday. He was very nice, and his business is booming. Not an empty seat in the waiting room. I looked around at the other patients and tried to guess which procedure they were interested in. Tummy tuck over there....Ooh brow lift, please...Augmentation, Lipo, Rhinoplasty?? It took my mind off the fact that I was there to discuss the best way to remove my breasts.
I haven't always been a fan of my breasts. I hated them in 6th grade, when I was the first in my age group to wear the dreaded under wire (pre-victoria's secret). I was a little frightened when I woke up 3 days after Owen was born to find they had tripled in size. But other than that, they have been good for me. They discreetly hide the belly underneath, they fed two babies, they keep me from having a pear shape. They look good in sweaters, especially. So right now, I am mourning.
After much prayerful consideration, 514 questions to the surgeon, google images, and Christian's blessing, I have decided on the double mastectomy. I am not a carrier of the BRAC gene, but I know that the right side would be a source of continuous anxiety if it were to hang around...not hang...enthusiastically perch.
My surgery will be December 12, 2012..12-12-12. The plastic surgeon will begin reconstruction at that time using tissue expanders that will be inflated over time to make room for implants. My hospital stay will be 2-4 days. I will return home for the remainder of the recovery.
Owen is convinced that if my breasts are removed that I will then become a man. Ellyott is quick to point out that I clearly cannot be a man, because I have long hair. Funny, brave kids. Although I come locked and loaded with many Dolly Parton jokes, this is super scary. Please keep praying for all of us.
Insert plug here
The weekend of my biopsy, mom and I went to a craft show downtown. A man selling iron art sculptures had pink ribbons made of horseshoes. I pointed to it and told mom I needed one. He heard me and told me the story of his wife who was 5 years Cancer free. He then gave me the pink ribbon. We were so touched by this man's kind words during our storm, that we walked around the corner and cried amongst the hairbows and Christmas ornaments. When I learned My results were positive, I emailed the man to thank him for his encouraging testimony. His wife emailed me this week. I am so humbled and touched by the women that I have come in contact with that have a story to share.
Anyway visit www.masonsforge.com
This week has been rather normal, which is my new favorite. When I can go any period of time without thinking about my annoying tenant, I am grateful. I meet with the plastic surgeon next Wednesday. My oncologist says that he has done 9 out of 10 boobs in this town. I guess that's a good thing. I am very interested to hear all the details of breast reconstruction. I hear there is an option where they use belly fat and muscles to rebuild. Can I get an AMEN?? How about inner thigh fat?
Seriously, though. I have had all week to process this whole thing, and although I have my moments of complete anxiety, I think I am ok. I know I am going to be ok, and this is why...
Last week I started a new job. I love the new place and the employees there have been very sensitive and understanding about my new diagnosis. The downside is that I have only been at the job for a week, so I have not had anytime to build up short term disability. Although I am insured, I will be facing at least 6 weeks out of work to recover from my operation. This has been a great source of anxiety for all of us. Six weeks unpaid would cripple any family in this economy. A friend of mine sent me a text on Monday that said she was praying about the job, insurance situation, "miraculous provision", she called it. On Tuesday, I was given a chance to return to the position that I have recently left, with my benefits intact, including almost exactly 6 weeks of short term disability. As sad as I am to leave my new workplace, I cannot deny God's presence.
In case you were wondering, my God is still in the miracle business.
With this new development, I can concentrate on my kids and Christian, and being grateful. Please continue to pray for us as we meet with the surgeon, and make the final decisions. I hope each of you enjoy your family today. Today, I am thanking God for this week's miracle.
I started my morning like I wish I could start every morning, with all four of us gathered for breakfast at the same time. I love family meals more than anything on the planet, by the way. For just a few minutes I was normal again. I didn't think about my cancer at all...for just a few minutes.
Ride to church..normal,
traffic..normal,
church clothes..normal,
weather..normal.
Got to speak to a dear friend in Sunday school who is a 17 year survivor. She had so many things to share. I try to take it all in, because I am smart enough to know that I need her story and her help. The thing that she said that stuck with me the most is to tell people how I am feeling, even if it is bad. People want and need to help. I know this will be my hardest challenge, because I need to be in control. So when I don't answer the question, what can we do to help, Go ask Christian.
I asked Christian today how he felt, and he responded with, "I think we've been through worse". I wanted to say.."Oh really????" But I know he is right. In AA they say 1 out of 10 get and stay clean and sober, And my doc says I have a 90% chance of being cancer free in 10 years,
so maybe I have been through worse.
In the spirit of our message at church, and what should be my everyday thought process, I am thankful. Thankful for family meals, Sunday school, ladies that share their survival stories with me, 4 years 6 months 12days of sobriety, the moments when I feel normal, and sherbert punch.
