Tuesday, December 30, 2008
I can say on behalf of all of us we are truly happy to be able to bid 2008 a final farewell. Never has the adage out with the old and in the with new meant so much. We're hopeful that the new year will be filled with good health, abundant happiness and magical moments for all those we are fortunate enough to have in our lives.
Marla, Mike and Sully
Monday, December 22, 2008
The festival of lights began last night and we were reminded about how truly lucky we are. We have been so blessed as a family to have so many people who have been a source of light to us. May the beauty of the holiday season be filled with joy and peace and may the new year be filled with health and happiness.
Marla, Mike and Sully
Wednesday, December 17, 2008
Thursday, December 11, 2008
When I open my heart I feel how deeply I can love.
When I open my mind I awake my spirit.
When I open my spirit I embrace my body and vow to heal it fully.
And when I open my life I accept my limitations
and continue to strive for the highest and most honorable.
I maintain hope.
I pray for courage.
I teach peace and acceptance.
I let go and close my eyes surrendering to the darkness
knowing light will come on a new day.
Friday, December 5, 2008
How can I tell you what I really need if I don't know myself?
I am working on identifying wants from needs.
Focusing on what is truly important.
The want for those around me to not have to suffer and face life's uncertainties and the need for everyone to understand that we do possess inner strength and the ability to call upon it when presented with our own personal challenges.
Wednesday, December 3, 2008
Monday, December 1, 2008
It seems that the previously mentioned rash looks like contact dermatitis -- according to my ONC and the ONC Nurse. So, I will continue on all prescribed meds / vitamins until further notice and keep an eye on the area. I can also use a topical cream to help relieve the strong urge to scratch. Pretty exciting huh?!
I'll keep you posted. In the meantime I am successfully resisting the urge to scratch.
Saturday, November 29, 2008
When I was little I really thought that I had it all figured out. I remember that I thought the barren mountains along I-10 were really sleeping dinosaurs and at any moment they would wake up from their fifty million year slumber and begin roaming the earth. Their tall necks stretching into the sky would surely touch the clouds.
I also thought that if you were listening to the radio and you turned it off mid song the same song would be playing when you turned the radio back on.
I believed that there were teeny tiny people that lived underneath the traffic lights at intersections and it was their job to change the light from green to yellow to red. When someone would push the crosswalk button it would send an alarm in the teeny tiny world and the teeny tiny people would know it was time to change the light.
And when I was seven and my Grandparents gave me a handful of silver dollars and fifty cent pieces from their weekend trip to Vegas. I remember opening my first bank account with my shiny money -- $7.50. I also remember being truly distraught when I made my first withdrawal. I was not given the same money back. I remember asking why I was given paper money when I had given the teller coins.
Somewhere along the way the innocence of my childhood and my thought process gave way to the wisdom of adulthood and life experience.
A constant has been a love of clouds. In my early twenties I had an opportunity to be amongst them. I was para sailing off the coast in Eleuthra. I remember gliding along and feeling the breeze as it gently swayed me into a Zen like state. It was so quiet and peaceful. 300 feet above the beach felt like it was the closest I could get to heaven while being on this plain of existence.
There was a time when I could easily identify all of the cloud types and know the subtle differences between cumulus and stratus. But there was also a time when I couldn't identify invasive from in situ and when I didn't know the toxicity of AC versus TC.
I had a good look at the clouds today. I paused to celebrate their magnificence and take great honor in being able to continue to gaze at them.
Wednesday, November 26, 2008
Tuesday, November 18, 2008
Friday, November 14, 2008
I did not know what to expect and I think that no two people have the same experiences. I can tell you that it was a very emotional (in a good way)and I am still processing it. But I slept better that evening than I have in months. So I am thinking that my qi needed some attention.
We started the session by talking about my cancer journey. Which started when I was 8 with the death of my real father and continued with the death of my real mom followed years later with the death of my step mom. And of course there have been others along the way that have battled cancer and continue to battle in my circle and of course my own diagnosis in March.
I was led through several exercises that target different things. One of them was a reprogramming of my DNA. Now it may sound a little woo woo for some of you but I am open to whatever works -- I am cancer free and want to keep it that way. I had to visualize the bad pieces of my double helix and then repair them (visualizing what was bad in this case glowing with what was good.)
Following that exercise I worked on healing my heart. As I was told that it seemed like with all that I have been through and even though I have a positive attitude and outlook there is still a wounded heart that needed repair and the breast and lungs are attached to the heart center. Again, this may be too out there for some of you. This was truly cathartic for me. I was told to visualize a door outside of my heart and to open it and then to really examine my heart and look for signs of tears and breaks and if I found one I was to use a needle and thread (I visualized gold thread and quite a large needle) and mend them. As I was making the repairs the thread dissolved leaving a perfect heart. As tears streamed down my face I felt lighter as I let go of a lot of past hurts. It is difficult to put into words the impact that this session had on me.
We talked about releasing any and all pain of losing loved ones and replacing it with a celebration of the joy for having had them. This is not new for me but in the context of the entire session it made a tremendous impact.
I was reminded that although I am done with my treatment (with exception of reconstruction) I am still not at 100% and it will take time (approximately two to three years) for me to get there. That must explain why I have been drawn to butterflies in the last several months -- I feel that I am in a cocoon of sorts and when this is truly behind me I sense emerging as a magnificent butterfly.
Friday, November 7, 2008
One of our last conversations was at LAX and we were saying goodbye to one another (she and my Dad were headed to Texas.) I did not want her to leave (she was going there for a bone marrow transplant.) I remember hugging her and crying as she told me that it was her only hope. She had no other treatment option. She knew she was dying and she went and did what she had to do because she wanted to live. Unfortunately it didn't work out as they had planned and a few weeks after they left L.A. they returned back home where surrounded by family and friends she passed away.
Now, twenty years later, I like to think that my mom knows how my life has unfolded and that brings me a sense of comfort. But I also feel that emptiness that she is gone. I know in my heart that the choices she made and the bravery and courage she displayed while going through her battle with cancer have certainly given me the strength to face my journey and to attack it head on.
With the support of my family and friends I am able to embrace each day and feel the many blessings of light and love around me as I rebuild and truly recover. So what if I am feeling fatigued -- I am here!
Saturday, November 1, 2008
Hoping that you all had a very Happy Halloween.
It was a true treat to be with our Ewok.
I missed trick-or-treating last year due to work so I was truly grateful that I could be with my favorite guys last night. It was also a treat to be able to make Sully's costume.
I am simply in awe of the mask and spear that Mike was able to create. He is such an amazing artist.
I continue to count the many blessings in my life.
Thursday, October 30, 2008
My hair is really growing in now. It looks like the color is basically the same. It is too early to tell if it will be curly or wavy. The pic on this posting was taken just moments ago.
Earlier in the week I transitioned to the post treatment group at weSpark so today I went to the in treatment group one last time to say goodbye and have a sense of closure. That group was a big part of my journey when I was undergoing treatment. It was a place for me to go and share what I was experiencing. A non judgmental environment which is so essential when you are in a vulnerable place. No matter how strong you are and how much support you have the ability to share your experience with others in a similar situation is helpful. I don't want that to sound like I don't appreciate and embrace all of the amazing people that have continued to keep us in their thoughts and prayers so please don't take offense but for those that have undergone a life changing event I think you may understand what I am trying to say. Without the love and support of my dear husband, family and friends I may not have sought out a place like weSpark. And I am truly grateful that I did. Mike continues to allow me to find myself and my "new" sense of normal and I am so incredibly blessed and fortunate that I can do that.
I certainly would never wish a cancer diagnosis on anyone. But g-d forbid you are faced with it you have to seek out a cancer support center. You can't battle this on your own. You need the support of those that have walked that road before you.
Tuesday, October 28, 2008
Yesterday I went to my second Reiki session at weSpark. Just in case this is a new term for you here is a little definition from reiki.org.
Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by "laying on hands" and is based on the idea that an unseen "life force energy" flows through us and is what causes us to be alive. If one's "life force energy" is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.
It is always an interesting experience to have energy work. My biggest challenge is lying still and quieting my mind. I have the same issue in Yoga. My mind wanders. Yesterday, I started thinking about dinner. As in what should I make for dinner... what ingredients do I have on hand to make a balanced and quick dinner. So as I was lying there yesterday and A was leading me in Reiki I thought about making a nice fresh green salad and steamed broccoli but that turned to roasted zucchini because I just picked up some nice organic zucchini and steaming seemed so pedantic. But then it was time to figure out the entree. And all the while I thought I just need to be in the moment. Which worked temporarily until I thought about my 88 year old Grandma and her broken telephone which would be repaired today. This went on for an hour. My mind wandering while A worked on my life force. I have to say I did relax and I did take a lot in. I am continuing to remind myself to be in the moment. It is one of the many new mantras that I have since being on this journey.
Earlier in the morning I worked on my resume and surfed the net for potential job leads. This felt good. My return to work date is January 5, 2009.
These are my thoughts; because I have met and continue to meet so many amazing people on this journey. I am looking for a job where I can give back. Ideally I want to work for an organization or cause. I am excited about the prospect of doing something different and about the opportunity to make a difference and help others along the way.
Monday, October 20, 2008
Happily it has been close to four weeks since my surgery and three since I was last in the hospital.
Today I had a bone density test. Other than being placed in some rather odd positions the test was rather uneventful. I did manage to catch a glimpse of one of the X-rays and it was pretty interesting. I could see my lungs and all of my spine. Since science has always fascinated me and we don't often get the chance to see the inner workings of our own bodies I found it pretty cool. The test is being done to assess my personal risk for developing osteoporosis.
Friday I started taking my Aromatase Inhibitor. My ONC prescribed Armidex. I think it is fitting that the icon identified with this particular AI is a set of hot pink boxing gloves. I like the symbolism -- this medication is further insurance that I have knocked out the cancer and am doing what I can to prevent it from coming back. If all goes well I will be on this AI for five years so in October of 2013 I will be celebrating being done with it -- That is something to truly look forward too.
Tomorrow I will follow up with the reconstruction surgeon to see if I will be scheduled for phase 1 (expander surgery) in late December.
Wednesday, October 15, 2008
I have always been proud of being Jewish and I consider myself more spiritual than religious. I feel like my faith is a large part of who I am and something that is deep inside of me.
During the recent high holidays (a time for celebration and reflection) I found myself celebrating in far different ways than I have in the past.
For starters I was readmitted into our local (Catholic) hospital. I never gave a second thought when asked about my religious preferences. I told the admitting nurse that I was Jewish. G-d forbid if I was ever in a situation where it became medically necessary to acknowledge my religion I take comfort in knowing that my Rabbis are a phone call away and that the hospital has a staff of Jewish Chaplains.
Thirty minutes before high holiday services began at our temple Rabbi J called to tell me that he was thinking about me and that he knew that next year I would be in the synagogue with Mike and Sully. I hung up the phone and was so deeply touched that he took the time to call.
While fellow Jews around the world were enjoying the tastes of the holiday (apples dipped in honey and round challah) I was taking laps around the hospital floor with my IV in the hopes it would reawaken my bowels so I could finally graduate to a liquid diet. While Jews were making their pilgrimage to synagogue to hear the sounds of the Shofar I was listening to a CD that one of the Jewish Chaplains had lent me. "The Birthday of the World: A Traditional Rosh Hashanah Service" narrated by Leonard Nimoy and featuring a glorious choir. I laid in my hospital bed and meditated to the melodies coming from that CD. I was transported to that synagogue. Being lent that CD was a magnificent gift. The sheer beauty and familiarity of the melodies will forever stay with me. It was a very moving way to celebrate Rosh Hashanah.
In addition to the call from my Rabbi and my own private high holiday service I also had the pleasure of having my very own shofar blower come to my room specifically to share in the mitzvah of blowing shofar. The group from our local Chabad that came to the hospital did so because of their connection with G-d and I received this mitzvah because of my connection with G-d.
I was discharged and sent home several days before Yom Kippur. Once settled in I listened to a very sweet message from Rabbi S.
Thankfully I felt well enough to attend services for Yom Kippur. Sully sat with Mike and I. Hearing my name as it was shared on the Mi Sheberach list and reciting the prayer for healing along with the rest of the congregation was deeply profound. I held onto Mike's hand and looked into his loving eyes.
These are truly high holidays that I will remember.
We all have our own beliefs which is what makes us all so incredibly special and unique. I am simply grateful to continue to have so many blessings of life and love around me.
Sunday, October 12, 2008
While we listened to the sound of rain I wrote the following:
Rain falls outside my window and off in the distance I hear thunder which reminds me of my personal journey and my path to see rainbows and sunshine.
The dark days are a normal part of this process. The road to recovery has been paved with a lot of love and support but it is the portion of this journey that I must travel alone that is at times the most difficult. The moments where I reach into the very depths of my soul and confront the events that have transpired and work through how I have been forever changed. It is not the physical changes that I write about although I suppose those are constant reminders. It's the internal changes -- the spiritual and emotional.
I know that I will continue to hear the sound of rain but I also know that sunny skies are within my reach.
Tuesday, October 7, 2008
A few moments on the website and you will see that we can all make a difference in the fight against breast cancer. Her goal is simple. Create a database of 1 million women from all ethnicity's in all age ranges -- from survivors and those with no history of breast cancer.
Please take a moment to look at her site and register. If we all work together we can prevent another woman from having to tell her loved ones she has Breast Cancer and find a cure for this disease.
Sunday, October 5, 2008
So I meant to call the last post "The Illeus and My Odyssey" but I had a post Chemo moment and couldn't remember it until now.
It has been wonderful being home and getting back into the swing of things. I truly feel now that my recovery can officially begin. I celebrate the fact that my treatment with the exception of being on an Aromatase Inhibitor is behind me now. The months really went by very quickly and I am seeing the signs that my body is fighting back and rebuilding itself. My hair is growing back -- my nails are growing -- all signs that my healthy cells are working their magic! At my oncology appointment this week I will most likely be told what Aromatase Inhibitor I will be starting and am hopeful the side effects will be minimal as my body adjusts to it. I am hoping that I will be back to driving later in the week. In the meantime I am taking it easy(ish.) Listening to my body and trying to not overdo it. Post surgery complication aside I have to say the pain from the hysterectomy is beyond minimal.
Yesterday Mike and I took Sully to his very first Tae Kwon Do competition. He competed in both forms and sparring. It was amazing to be a part of something so much bigger than our local Do Jang. Mike and I were so incredibly proud of our little guy. He has been practicing his forms diligently and did amazingly well. He took home a Gold medal in forms and a Bronze medal in sparring. He truly relished every moment and is wearing his medals with great pride. We all had a great time rooting for his fellow classmates. I was so truly grateful that I was able to be there.
This morning I took Sully to continue on his popcorn selling quest. We went door-to-door and he sold his little heart out. I marveled at the fact that a few short days ago I was still in the hospital taking laps around the 7th floor.
I continue to feel so incredibly blessed.
Thursday, October 2, 2008
And I am truly thankful for that. I was discharged from the hospital Saturday evening. On the condition that I return to the hospital Sunday twice for infusion treatment as a preventative measure for my bleeding disorder. My homecoming was short lived as I began feeling really sick in the middle of the night. To the point where Mike had to phone Dr. K and let her know what I was experiencing. Since I had to be back at the hospital in the morning the thought was we would access the situation there. We did just that.
I ended up being readmitted to the hospital on Sunday. At one point in between a round of super intense abdominal pain I quietly told Mike I felt like I had "shit poisoning." It turns out that what I did have was a Postoperative Ileus. (A temporary paralysis of a portion of the intestines typically after an abdominal surgery.) The best way to treat this is to be taken off all food and water until sound can be heard in your abdominal cavity. So me and my IV got to be best pals for a few days. I was then put on a liquid diet and then moved to the soft/bland diet where I got the chance to order off of the hospital menu. Just a side note; since when are smothered Pork Chops soft and bland? I opted for the Manicotti.
With actual food in my belly my mission was to poop as that was my ticket to freedom. It is truly amazing to me that with all of the medical advancements that we have made it comes down to something as rudimentary as going #2! Thankfully I was able to do that early this morning and be discharged shortly thereafter.
I am so very grateful to be home.
Thursday, September 25, 2008
Special guest blogger Mike here. I'm looking forward to actually sleeping tonight, so I'll keep this short.
First and foremost, I am VERY happy to report that Marla's hysterectomy went excellently. She is recovering and, although in some pain, she says it is not terrible. She is obviously spending the night at the hospital tonight -- we're not sure if she'll also be staying Friday night.
The day went pretty smoothly. We checked in at 8:15am, moved through the paperwork process and got to the pre-op room rather quickly. Surgery actually started on time (12:30pm) and I was very happy to have Ron, Sherry, Becky, Aaron, and Julie there to keep me company during my usual surgical angst. What can I say -- I'm just not a huge fan of hospitals. They smell funny and the food sucks. But at least we were at St. Jo's again -- and they always take good care of Marla.
About two hours later, (2:30p) Dr. K (not sure I'm allowed to mention actual names) came into the waiting room to give us her report. She said that when it came to the removal of Marla's ovaries, uterus and cervix, everything was routine -- in fact she was delighted to describe Marla's pelvis as "boring." Although I was totally delighted to hear this WONDERFUL news, I must argue the point -- I personally have never found any of Marla's parts "down south" to be the least bit "boring."
The second part of Marla's surgery today was to remove her porta-cath which came out "easily" and "uneventfully." So, everyone, get ready to join me a collective "thank god" as this marks the official conclusion of Marla's chemo treatment. Ready...here we go... "THANK GOD!"
So a very positive day -- and one more step towards our circumnavigation of this bump in the road. I am so proud of my Marla. I am proud of her strength. I am proud of her optimism. I'm also proud that I just used the word "circumnavigation."
As always, we are so grateful to all of you for your prayers, light and love. Life is a blessing sweetened by the presence of all of you.
Wednesday, September 24, 2008
Dear Port-A-Cath, Uterus, Ovaries, Tubes and Cervix,
I wanted to take this opportunity to thank you all for serving me so well.
Port-A-Cath, we have only known each other since mid April but you have made the last five months very easy. You never failed to do your job and thus spared my veins from potential shut down and/or collapse from the Chemo Therapy and weekly blood draws. I was so very fortunate that you and I had an easy time with one another. It is with great elation that I say goodbye to you as it means that my Chemo is truly a thing of the past and I am able to move forward with my recovery and healing.
Uterus, Ovaries, Tubes and Cervix, we have been a part of each others lives for forty-four years. You welcomed me into womanhood thirty-one years ago and made your presence known every month. In the last decade you allowed me the opportunity to have a beautiful son. You provided a safe home for him to grow and develop in until it was time for him to make his entrance into the world. You served your purpose magnificently. My decision to have you removed is a difficult one but is incredibly necessary for my continued health and well being.
I am eternally grateful for all that you have given to me and provided to me over the months and years and from the bottom of my heart I thank you.
With deep respect, love and gratitude,
Tuesday, September 23, 2008
As a way to help calm my anxiousness I gave myself a new mantra which is -- my journey is different from my Mom (Linda) and Step Mom (Jacki) and will have a much better outcome. In addition to the mantra I continue to hold onto the image of Mike and I sitting in our rockers in our retirement.
The day progressed and I found myself busy with pre-op appointments which included an EKG and Chest X-ray.
I asked Bonnie F., the magnificent facilitator of my support group, for any tools she might have to assuage my nerves. And she suggested that I visualize my desired outcome and remind myself that right now I am alright; safe and whole. I took the time to think about this and allowed myself some quiet time to stop and take deep cleansing breaths and chant my new mantra. This definitely helped (and continues to.)
I picked up Sully from school ready to take him to a few more places to sell his popcorn for cub scouts but was greeted with an unhappy face and droopy eyes. Once I got him in the car his nose started to run and he started to cough. Poor little guy. Thankfully our pediatrician was available and confirmed it is a viral bug that will work through his system. He stayed home today with Mike while I went to dentist to have my permanent crown put on -- only there was a little SNAFU. My tooth or more aptly the dental pulp had irreversible pulpitis. (Which explains why it has been hurting.) So three hours later after a deep cleaning and some packing into the root I was sent on my way with an upcoming appointment to see an Endodontist for root canal once I recover from surgery.
That is really the reader's digest version.
Honestly, I think these diversions have been good for me on many levels. Not that I want Sully to have a cold or that I want to have a root canal but I do think that they are my little reality checks to not get bogged down with what is coming up. Simply put these things force me to stay in the moment.
Monday, September 15, 2008
In order to tell him this I had to give him a brief anatomy lesson.
I love how we have these amazing talks during our day to day activities. This all took place while we were walking through the neighborhood selling popcorn for Cub Scouts. I explained the purpose of the uterus and what ovaries and tubes are. I told him that we knew that the cancer I had grew because of my ovaries (I chose to not get into the whole hormone discussion about estrogen.) So by having this surgery I would be protecting myself. I asked if he had any other questions and then a short while later before he was completely wiped out from the door-to-door popcorn sales he asked me "when I grow up will I get cancer because you breast fed me?" I took a deep breath and said "I hope that you never get cancer. And I can say with certainty that my breast feeding you wouldn't give you cancer." I mentioned this conversation to a friend she said she always says none of us know these things.
While I think there is honesty and validity to this I also think this is not the answer Sully was looking for. I pray that he and Mike never get cancer. And while it is true that none of us know what will happen -- at the age of nine these are some of the conversations that we have. It is such a blessing that we can have them. That Sully is able to articulate his thoughts and fears and feels close enough and comfortable enough that we can talk openly.
Thursday, September 11, 2008
In addition to the mourning we also discussed the concept of attachment to something versus connection. So while I was attached to my breasts the connection to them and my femininity is not something I ever felt. As I prepare for my upcoming hysterectomy I am thinking about my uterus and how that is a different story for me. The connection between my uterus is the link to a fundamental purpose that we (and it depends on what you believe) were initially designed for. That purpose, the ability to bring a child into this world, is being removed. And it happens to women all the time -- my circumstances are no more unique or special than any other woman who has had to make this decision... But I find it interesting as I begin to really process what it means.
I continue to keep my eye on the big picture. Being here when I am old in my rocker with my dear husband next me and celebrating all of the many life events to come. I also continue to feel so truly blessed to have the support that I have.
Tuesday, September 9, 2008
Yesterday afternoon was my mole removal adventure. The entire process was really quite quick. I didn't feel much except for a little tugging and pressure when the DOC was putting the stitches in. It looks like I have 4 of them and I have been told they will dissolve. Surprisingly, I didn't have to have my head shaved and the 3/4" scar will be hidden nicely in my hair line. I left the office feeling as if I looked like one of the "Yankee Doodle" soldiers with my head bandaged up -- all I needed was a piccolo. Thankfully I was able to take off the bandage this morning.
Friday, September 5, 2008
A quick visit at the revolution health website today answered a couple questions that I had about my new hair.
Yep, alert the press, I have some new hair coming in. Not enough to go sans schmatta (scarf/head carving/rag) but enough where Mike and the ladies in my support group noticed it was growing back in. It is too early to tell what color it will be and what the texture will be. Some say red, some say brown, some say blond. I can assure you it is not blond. The blond I see are a few grays that are trying to make their presence known. But it is growing in nonetheless.
Apparently hair grows at the rate of 1 cm per month.
So in six months to a year I will have a new head of hair.
I am mighty excited about this.
I just noticed that the angle of the photo gives you all a nice visual of the mole that is scheduled to be removed on Monday. Since it is a little deep and requires a few stitches I will be getting my dose of DDAVP (clotting factor I don't produce [for details read blog post: Slow and Steady... from 5/1/08]) prior to its removal.
The fatigue seems to be making a little come back. I am sure the new "back to school" routine has something to do with it. I am taking it easy and resting when I need to.
Wednesday, September 3, 2008
Sunday, August 31, 2008
Mike, Sully and I had the pleasure of going to our dear friend S's new office -- where it was blessed and several Mezuzahs were hung by our local Chabad Rabbi.
It was an honor for us to be there for this special occasion. I truly enjoyed hearing the Rabbi speak.
The basic idea of what he shared from the Torah portion this week is that blessings are continually around us if we allow ourselves to be open to them.
Mike and I have continued to see the many blessings in our lives during the last several months. We continue to be thankful and grateful for so much.
The Rabbi's message certainly wasn't new but it was a validation of how we feel and how we choose to lead our lives.
Friday, August 29, 2008
My new friend, Tamoxifen, and I are trying to peacefully coexist.
I am only scheduled to be on this for another four weeks until my Hysterectomy (9/25). I can tell you that the side effects are real. According to the National Cancer Institute not all people (men are put on this too) have side effects. I am just lucky I guess. I am doing what I can to not let them get the best of me. For the most part I feel like I am succeeding. The biggest challenges I have been feeling are the fatigue, swollen ankles, persistent nausea and a new one, bloating. I am hopeful that my body will acclimate soon to the Tamoxifen and the side effects will subside or the four weeks will breeze by and I will no longer be on it -- either one is fine.
Now that I am done with Chemo (it has been 4 weeks and 3 days since my last one) I am able to take care of a few things like visiting the Dentist and the Dermatologist. The recent trip to the Dentist illuminated the fact that I have a cracked tooth under a crown so I get to take care of that this week. The recent trip to the dermatologist led to a biopsy of two moles. Amazing what you discover when you no longer have a head of hair. It turns out that out of the two biopsied one needs to be removed while it is not skin cancer (thank g-d) but it does have the ever so slight potential that it could turn into a melanoma. So my DERM heavily suggests having it removed now and since I am waiting for my hair to grow back in there is no time like the present.
That's the update for the moment.
Wishing you a Happy Labor Day weekend.
Be sure to tune in and watch the Stars come out to support Jerry and his Kids.
Friday, August 22, 2008
Thought I would share that I have been having a little bit of tiredness since I last blogged.
Okay -- a lot of tiredness.
Wednesday I felt like a walking Zombie.
Thankfully, yesterday I did not. However today... I am a little tuckered out but gratefully I do not feel as much fatigue as I did the other day. Not sure if it is due to the Tamoxifen or due to the Chemo assault of the last few months. Or possibly a combination of the two. Just to be safe I went to see my ONC yesterday and had my levels checked. I am slightly anemic which may have something to do with the fatigue. Not enough to be put back on Iron or to worry about. He will keep an eye on this and remember he was my Hematologist long before be was my Oncologist. All other levels including my tumor markers are good.
I also learned that the pie extravaganza in Julian added on 3 pounds! Oy!
My ONC stressed that it will take at least 3 months to get my energy back from the Chemo. So I will continue to listen to my body and rest and SLOW DOWN when I need to.
Have a great weekend.
Monday, August 18, 2008
We headed to Julian, CA and indulged in all things Apple.
Apple Pie, Apple Cherry Pie, Apple Boysenberry Pie, Apple Cider,
We made it our mission to seek out the best tasting pie (and other sweet treats) -- which wasn't too hard. Everything was delicious.
Now, lest you think all we did was eat we did see all of the sights in town and out of town.
The Stonewall Mine
Digging for tourmaline at the Himalaya Mine
(I happily sat under the canopy and caught glimpses of M & S's finds)
The Julian Museum
The Julian Cemetery
The Julian Jail
The Santa Ysabel Casino (M & I had a "date night" -- thanks to J)
We had lots of opportunities to relax -- which gave me the time to read and write in my journal.
Here are a couple of things I wrote:
A change 0f scenery.We were all so grateful that we could take this trip and celebrate my being finished with Chemo.
A chance to recharge and refresh.
A respite from doctors.
We marveled at the beauty outside our windows.
A lone lady sat at a table at the neighborhood coffee house.
Her head covered in a khaki scarf mine in burgundy paisley.
I smiled at her as we approached the entrance.
She smiled back.
We shared a moment.
We exchanged simple pleasantries and then my family and I went on our journey.
Would I see her again?
What was her story?
Where was she on her journey?
Did she seek solace in this seemingly secluded place?
Does it matter?
The Julian Cemetery
Climbing the railroad tie steps bordered by an apple orchard we entered the old cemetery.
Seeing folks whose lives ended so long ago we said their names aloud as a way to honor them.
104, 98, 89.
Lots of soldiers from various wars.
Several infants and the Wolf Boy (still not quite sure about him.)
A big wind blew through the trees --
I closed my eyes and felt the wind around me enjoying the peace and serenity of this place.
Now that we are back I have been diligent about the treadmill -- maybe it is the inspiration of the plethora of older women athletes in the Olympics or the fact that I feel like a great big blob after all I ate while away -- whatever the case I am trying to get back into the daily exercise routine. I have started taking Tamoxifen -- so far nothing to report. I am hopeful it will remain that way.
Monday, August 11, 2008
I had my weekly appointment with my ONC today.
My levels are really, really good post Chemo #4.
And I don't have to go back for 3 weeks! Yippee!
My ONC gave me the thumbs up that I can move forward with scheduling my port-a-cath removal and hysterectomy for the end of September (both can be done during the same surgery.) I am waiting to hear the official date it is scheduled for.
I picked up my Tamoxifen prescription today. Since I have two antibiotics left from my sinus infection I will start the above mentioned on Sunday. I want to give my self a chance to get that out of my system before introducing something new.
Mike and I met a prospective reconstruction surgeon today. We saw what the expander looks like and held both saline and silicone implants. It was quite an education. We have a lot to think about as we continue to navigate down the reconstruction highway. Since choosing delayed reconstruction we have time to look at all the options. Based on my size and my bleeding disorder the flap procedures (and there are a lot of those) are not in my best interest. I will be going with expanders and implants and there are 4 phases to this choice which take about 1 year to complete. There are a few more surgeons that we want to contact before we make our final decision of who we will go with.
I loved all the comments on the last blog posting.
Your continued support has made and continues to make a huge impact on my healing and recovery.
Thursday, August 7, 2008
This remark made me sad. I have never felt for one moment during all of this that I was damaged and I have never felt like I was less of a woman.
I know everyone who has ever dealt with this disease is on their own personal journey and people process things in their own way.
Do I like the fact I am dealing with Cancer -- NO!
Would I change places with someone else so I don't have to deal with this -- NO!
Do I feel like less of a woman because my breasts are gone -- Absolutely NOT!
Do I feel like I am less of a person -- NO F'ing Way!
I have a lot to be grateful and thankful for and I know it. I count my blessings daily. My beautiful husband, son, family and our incredible circle of friends have made a tremendous impact on my healing and recovery.
Wednesday, August 6, 2008
Happy Wednesday! It is one week since my last Chemo and it has been quite an interesting week. I recovered nicely from my Friday wonkiness but did not feel quite back to normal. As it turns out in the wee hours of Tuesday (3A actually) a sinus infection hit me like a steam roller -- I tried to meditate on the sinus pressure/pain, I tried some visualization, I tried to ignore it and then I let out a few expletives and made my way bleary eyed into the kitchen where I took Tylenol and Sudafed and then went back to bed. A quick call in the morning to my ONC and I was picking up a course of antibiotics. Thankfully they have begun to kick in and I am feeling more energized and more like myself. I am continuing to take the time to really rest so this infection does not linger.
Today I had my last day of physical therapy. I was officially discharged. The ladies that have been helping me to regain my mobility are true angels. When I started they were concerned with my post mastectomy range of motion. And since I want to have reconstruction surgery we had our work cut out for us. My upper body needs to be strong enough to support my new breasts and I needed the ability to raise both arms up above my head -- a task that was not possible when I started a few months ago. Now I have full range of motion and exercises that I can continue to do on my own to keep stiffness from setting in and maintain the mobility.
Several people gave me the advice to keep moving when I started Chemo and I think that really helped to get my mind (and body) in motion. I am very grateful for that piece of advice.
Sunday, August 3, 2008
Looks like breast cancer has just struck again.
Christina Applegate was just diagnosed and it was made public.
The link below is one of the articles that was just posted.
Personally I wish her only the best. I am sure she has a brilliant medical team and a lot of support both personally and from a far. The fact that she has a family history (her Mom battled breast cancer) is probably one of the reasons she was being monitored so closely and it was caught so early.
To all you ladies (regardless of your age) please make your appointment for your mammogram, ultra sound or MRI -- What are you waiting for?
Mike and I love your support and don't want to see you affected by this.
Friday, August 1, 2008
Greetings from the couch.
It is Friday and my usual post Chemo wonkiness has set in.
I am watching a so-so movie that is helping to pass the time and ease some of the blah-ness I am feeling. I am grateful that this is temporary and look forward to feeling better and better in the days and weeks to come.
It looks like I will be starting on Tamoxifen (taken like a vitamin) -- not sure when so I will keep you posted and then following my hysterectomy I will be switched to an Aromatase inhibitor (AI). Figuring out which AI will be based on a bone density test and a few other factors.
Your thoughts, prayers and support continue to truly help all of us as we navigate down the path towards healing and recovery.
Wednesday, July 30, 2008
Just a quickie to tell you that I had my 4th and FINAL Chemo yesterday.
The earthquake was certainly a diversion.
I just got back from the hospital a short while ago to get my final neulasta injection. A big thanks to J and M for the company.
Now I am off to take a nap and munch on some ginger snaps to fight off the nausea.
Monday, July 28, 2008
In my dream it was Tuesday, 7/29 (tomorrow) and I had taken Sully somewhere and at 10:30A I suddenly remembered that I was scheduled for my last Chemo only I had forgotten (up until that moment) and I hadn't taken any of my pre-Chemo meds and I was now a half hour late. I immediately called the office and explained the situation and was told to come back next week or the week after -- I was really upset by all of this and I pleaded with the oncology nurse on the phone that it was my last one.
Thankfully, it was just a dream.
And the truth of the matter is if in fact my counts are really low tomorrow and I am told that I can't have Chemo I know it will happen at the right time when my counts are high enough for my body to handle it. I don't think that will be case. I am feeling pretty good.
My last Chemo is so close. I look forward to saying goodbye to this part of the process. I am ready to focus on regaining my strength and rebuilding my stamina.
And yes, I started taking my pre-Chemo meds this morning!
Saturday, July 26, 2008
I spent some time at weSpark this week attending my support group and creative writing.
In creative writing our facilitator passed out nectarine slices as one of our prompts -- as we took our slice our time to write began. This is what I wrote.
It tastes like summerOur next prompt was "New Shoes" this is what I wrote.
It smells carefree
It looks like a slice of the sun
So what does it mean to me?
Summer is a stress free time
An opportunity to move at an easier pace
Somehow the pressure of spring, winter and fall melt away during the summer
I am not sure why this is --
Conditioning of childhood
Longing of a simpler time
Being tucked in at night
Being read to
I look at the children at play and think don't be in such a rush to grow up
Relish your youth
Like the nectarine slice take small bites to savor it
Maybe that way it will last a little bit longer
There is nothing like a pair of new shoes. The Psychic told me several things when I had my session with him six years ago. He said her hair is long, she is laughing, she is pain-free and she has lots of shoes.I look forward to the new week and celebrate that my last Chemo will be completed.
My Mom always had a tremendous sense of style from head to toe. She passed her love of shoes onto me.
When I finally outgrew having to wear black and white oxfords in a double "A" it was glorious --
I could be like the other kids and get Keds -- Red Keds and Blue Keds. Those simple sneakers became so important to me. I was no longer the skinny kid with the "special" shoes. I was a regular kid.
Monday, July 21, 2008
I want to know how you are doing?
How's your health- in all respects?
Hi,I continue to be truly grateful for all that I am able to accomplish in a day. I know that a huge part of my healing is due to the incredible support, prayers and love that continue to come to all of us.
Great to hear from you.
I have responded well to all treatments thus far and have been using all of this as an opportunity to be very clear about what my wants and needs are...
Physically I feel really strong and Mentally, Emotionally and Spiritually even stronger.
The blog that we started has been extremely cathartic.
I am able to select what I want to share with others...
I am uncertain about the future from a "career" standpoint as I have said farewell to the work I have done for so many years and have no idea where I will land once I am given the all clear that I can return to the workforce.
In the meantime I go to the Cancer support center whenever I can and take a myriad of classes there. My favorites are Tai Chi and Creative Writing. I have yet to take part in the energy work that they offer but will be scheduling that this week. My support group has given me a lot and I have had the opportunity to speak with a couple of women privately who are now at the beginning of their own personal journeys. I was even asked to be part of our local hospitals "breast friends" network (in association with the American Cancer Society) -- so I feel like I am doing something right. :)
Just last week I picked up the guitar and started playing again which has been a tremendous feeling.
It has been close to 10 years since I practiced.
Friday, July 18, 2008
My week included two great visits to weSpark where I participated in what I have found to be my favorite outlets there. My support group of course which I continue to get so much out of as well as Tai Chi and Creative Writing.
It was really nice to see so many familiar faces in creative writing.
Our first prompt was listening to the Matchbox 20 song "Smooth" (Ft. Santana)
"This life ain't good enough..."
Here is what I wrote in response to the music.
Okay, so I am tapping my toes to the beat and feeling the energy of the music but am left with a sense of "Wow, I am older than I think." Not old like put me out to pasture. I like to think I have a lot of good bits remaining albeit I am currently "follically-challenged" and I suppose it right to say in this PC world "Mammary-challenged" but if we look beyond the surface I can say I have a lot to be grateful for and to offer.I think that sums it up quite nicely for the moment.
That notion that 40 is the new 30 --
for me it is the notion that now in my 40's -- I get it.
It's not so serious.
You seek out what makes you happy and makes your own heart sing.
The constant celebration of the small things.
So you don't go around in high heels, hose and full make-up.
Who really gives a f**k.
It's liberating to be comfortable enough in your own skin -- to say
"Hello world. This is who I am -- Hairless, Boobless and ALIVE!"
Wednesday, July 16, 2008
Time for a little medical update.
I had my weekly visit to the oncologist yesterday.
You all will be happy to know that my weight has continued to stay consistent. I fluctuate by 2 pounds weekly -- This has my doctor very pleased since he wants me to maintain my current weight. My counts were very good. White Blood Cells at 10K so the Neulasta injection the day after Chemo really did its job and the bone pain was not as intense this go around. I did still feel the little teeny tiny bones in my ears but only for a short time.
I took several questions to this appointment and received some answers that I want to share with you all.
1) Hysterectomy vs. Ovary & Tube Removal
I am leaning towards having all of my remaining lady bits removed for a myriad of reasons. My ONC is not in disagreement. A few things need to be discussed before a final decision can be reached. There are the results of one more genetic test (CHEK2) that are pending. The idea of what poses less toxicity to my system and a conversation with my OBGYN. Next week I will meet with my OBGYN to discuss toxicity and a few other things. My blood is currently being tested for the CHEK2 gene (results take close to 6 weeks.) Since my cancer is hormone receptor positive I really have to do something to curb the normal hormone producing process in my body and the idea that once off Chemo (which has thrown me into menopause) to only go through menopause again at the "normal" time seems like a twisted joke. But I will patiently await more information.
2) How long after Chemo before starting on Tamoxifen or Aromatase Inhibitor with/without Zometa
My ONC was one of the authors on the recent big study on Zometa and feels it may not be the best option for me. A Bone Density study will be needed before any decisions are made along with the final decision on question 1. If my ovaries remain inside of me (for whatever reason) then I would be on Tamoxifen for the next 5 years (taken like a vitamin) but if I am without them then I would be on an Aromatase Inhibitor.
I DO NOT need radiation -- Yeah!4) Tumor Markers
These will be monitored regularly after my last Chemo forever and ever.The current post Chemo plan of attack is to begin the healing and recovery process for my mind, my body and my spirit and will include:
Port-A-Cath removal -- done in hospital but out patient procedure. I will need DDAVP prior (this is the clotting factor my body does not produce enough of [see earlier post on Von Willebrand's]). This may be done with the following or on its own. Since my body heals a bit slowly from surgery due to the VW my ONC wants to keep things as simple as possible since the end results will be the same.And now for my Chemo Side Effects update. I am continuing to feel good and am grateful for the good days and the ability to go out and about and do things. I am listening to my bodies cues and trying to not overdo it. If I need to rest I rest. The last couple of days I have been experiencing an odd feeling in my lower legs (knees down to feet) -- kind of a heavy feeling as if I am wearing lead ankle weights. No need to worry -- I am checking in with my ONC daily. My ankles are not swollen and I am elevating my legs even as I type this. I will keep you in the loop. I am (with my ONC's blessing) continuing to exercise lightly during this as well.
Lady Bit removal surgery -- pending answers to questions above. I foresee earliest I would be able to do this is in early September.
Reconstruction surgery -- if all goes well I can proceed with this surgery 3 to 6 months following my last Chemo (so I am thinking somewhere between 10/29/08 & 1/29/09) -- If you know someone who had reconstruction surgery and they were happy with their surgeon please let me know.
The buzz cut continues to make me happy.
The hot flashes continue to make me hot and I seem to be waking between 4A and 5:30A daily... only to go back to sleep until the alarm sounds.
That's my medical news thanks for reading.
Monday, July 14, 2008
I went on the treadmill for a good solid thirty minutes this morning and could feel myself getting energized as each minute passed. It felt so great to be able to exercise today. I am definitely feeling tons and tons and tons better since my Chemo last week.
My mission today was to get my hair (what's left of it) buzzed. I was starting to feel like a plucked chicken and that was bothersome -- only to me but bothersome nonetheless.
A lot of folks that have paved the way before me have opted to shave their heads like Mr. Clean the first moment their hair begins to fall out.
Since my chemo literature says that "you may or may not lose all your hair"
I have been more reserved in my approach.
Mike, bless his heart, is constantly telling me that I look cute without hair. He certainly makes this journey a lot easier (that is a huge understatement) and has continued to keep me laughing. Thank G-d I have him as my partner in life.
So here is my latest look compliments of Sully my in house photographer. I am still losing my hair and that will continue until I am done with Chemo and all of the effects of Chemo have passed through my system. So who knows if I will end up looking like Mr. Clean -- for the moment I am happy with my new less plucked chicken like appearance and relishing the energy I have today!
Friday, July 11, 2008
As I have shared before the Friday after my Chemo seems to hit me the hardest. This has been the pattern for the last three rounds. Thankfully I only have one more Friday to feel this WONKY. After getting Sully off to camp and gratefully being able to come home and rest for hours and hours I finally got a change of scenery and hit the couch. I just logged on (my home page is www.greatday.com) and had to share what was awaiting me as it really captured my thoughts and feelings for today.
Friday, July 11, 2008 -- Even though your morning may not have been productive, there is still much you can accomplish in the afternoon. Even though you've suffered some setbacks, there are still plenty of options for moving forward.
Even though you may disagree with what someone has to say, you can benefit greatly from understanding that person's point of view. Even though you find yourself in difficult and challenging circumstances, there is much value for you to create.
Even though you may feel like quitting, you have what it takes to keep going. Even though the goal seems far away, every step brings you closer.
Even though there are plenty of reasons for you to feel sorry for yourself, you can choose instead to renew your determination and enthusiasm. Even though your path is filled with obstacles, you can truly enjoy the sense of accomplishment that comes from successfully moving beyond each one.
Even though darkness may at times surround you, your light can shine more brightly than ever. Even though you may occasionally grow weary, there's always a way to renew and re-energize yourself.
Even though the road has its twists and turns, the journey is worth the effort. Keep going, keep growing, keep learning and loving and living with all the richness your precious life deserves.
-- Ralph Marston
Wednesday, July 9, 2008
Mike was able to take a break from his current work project this afternoon to take me to the hospital for my Neulasta injection. He has been working so hard on this project and doing an amazing job (not that I would expect anything less -- he is such an awesome writer.) Since our return mid afternoon I had a long nap (3+ hours -- clearly needed.)
Can I tell you how much I love rice and black beans -- perfect bland meal.
Followed by a Popsicle. The blander the better for me the next few days.
Your comments continue to put smiles on our faces. I know a number of you have wanted to start your own email network so feel free to email me and I will forward your email to the parties that wanted to reach out (specifically L and A) just make sure I have your email and then I can forward them on.
As always thanks for continuing to keep us all in your thoughts and prayers.
Tuesday, July 8, 2008
My magnificent Mike is under a huge deadline for a Disney Project (that I can't discuss) and feels absolutely terrible about not being able to be with me today -- I assured him I would be fine an he was very happy to hear that my little sis R was able to arrange her schedule and be my chemo buddy. M and I where able to talk a few briefly times during chemo (cell phones are amazing.) I am continually blessed to have M by my side and know that this has been incredibly hard on him and the rest of our family and friends.
Prior to being taken back into the infusion room I met with my Oncologist to make sure my levels were high enough to receive Chemo. Happily my white count was hire then then last week and the week prior but to be on the safe side I will be getting a Neulasta injection at the hospital in the early afternoon tomorrow to boost my white count.
One I got settled in the infusion area it was time to go through my drill. I scoped out the comfy chairs and waiting patiently for one to free up. Once settled I had my port flushed out a final time before I received an injection of Aloxi (ant-emetic) For all the hot flashes of late I certainly felt like my old self with my collection of blankets. Thanks to Beck for continuing to pile them on. We were up to four by the time we were done. And dare I say I could have used a 5th.
Thanks to Deb and Howard I was rocking out with Marla's Warrior Mix and Marla's Quiet Mix. A first opportunity to listen -- great CD's -- my kind of music. I can't wait to listen to the others.
My sis and I had some nice talks and hate a nice lunch and both had a chance to read and rest. And then we were pretty much done 4+ hours seemed to go very quickly today... Chemo was really uneventful. So far no rashes or side effects that need immediate assistance. I am quite tried so it won't be a late night. I have already had one nap and see the need for several others in the future.
I came home and dozed off on the couch and woke up to Sully getting home from another magnificent day of camp. A big thanks to N, N and J from dropping him off. He is ready for Tae Kwon Do and is kicking back and relaxing. So in another hour we will take the short walk up the street and drop him off.
While I am being reminded that I need to live in the "here and the now"or as we said in acting class so many years ago "in the moment" there are a few goals for the remainder of the week that I feel are manageable -- when we talk about healing my mind, my body and my spirit I really feel that these goals come into play:
Tomorrow attend Sully's Mom's Muffins at camp
Attend Physical Therapy session (I think it is my last one)
At 2P I will need to get to the Hospital for the neulasta injection (boosts white blood count)
Attend my weekly support group
Depending on how I fee another weSpark Class
Attend Tae Kwon Do Sully's Belt Test (going from Green to Green Stripe)
Attend our dear friend Molly's "Gotcha" Day celebration
I am so grateful to have Chemo 3 behind me and the treatment phase hopefully winding down. I feel like I am moving that much closer to beginning recovery and healing.
That's our update. As always thank your keeping us in your thoughts and prayers.