Today I ventured into the world by myself. I went shopping for a spell at one store. After over an hour, my wound area became a little achy. Perhaps I should have worn my band around it like I do when I go to sleep. When I started to feel tired, I went home to prepare for Dianne's (aka Possum) visit.
How do you react when you receive a gift like this?
Dianne may have delivered it, but it was actually from her Filipino co-worker Mario. He is such a nut and thought these things would go well together and be a funny gift. I had no choice but to laugh hard. This is what happens when you get two crazy friends into an Asian market. Laughter is the best medicine I am telling you!
On the other hand, Dianne also brought me two hand fans, sesame cookies and these cute solar-powered Lucky Cats from her. (I mistakenly always call these Happy Cats.) Their heads bob from side to side thanks to the solar panel. These are the only cats I love. I can't wait to bring them to work so I can smile every time I look at them.
We made our way to a local restaurant after I opened all my gifts and had a great time catching up and laughing. Her visit was a great cheer-me-up. I had been feeling a little down after my shopping earlier when my body was reminding me that I am still healing from a big surgery. It is the stuff that can mess with your spirit and mind. Luckily, my new cats set me on the right path.
Roaming through the Photo Gallery on my phone unearthed some photos I have been meaning to share. Actually, my new brand of vitamins still have me wide-awake. I have already played on facebook and will have posted three items in my bloggie today after publishing these pics...
I learned how to make rainbow cupcakes and now I love doing them in different colors not just these tie-dye colors seen here. All you have to do is separate the cupcake batter into four disposable plastic cups or small bowls then mix enough food gel color to saturate each cup or bowl with a different color and mixing well. Take a spoonful of one color and fill each cupcake liner that you've already placed in the cupcake pan. Continue filling each liner with one color at a time but no more than 2/3 up the liner. It needs room to puff up. Bake as directed, cool cupcakes, frost/decorate and voila!
Can you believe this was in my pre-op folder? I wish this would have been included in my first surgery packet. It would have made things a lot easier. Like I always say, "Fiber Makes You Sexy".
When I was handed this quilt over dinner a week before my surgery, I was so overwhelmed that I started to cry. This is a big beautiful quilt -- twin size! Look at all the work my friends Kimmee and Cathy put into this. Each scrap was sewn; the fabric theme was Asian. The backing is that light teal you see on the edge. Each square in this quilt is a teal fabric center for Ovarian Cancer. I slept with this in the hospital and will continue to have it during chemo.
Some people have wedding favors or giveaways, I had "surgery favors". If you visited me in the hospital, you would have received a bag of chocolates and a cute-size bottled water I relabeled for the occasion. I also made chocolate cupcakes but I forgot to take pics of those.
There you have it for the pics. As for other stuff today, my shrinky dink was delighted to see me and remarked on how well I looked. She wasn't alarmed when I told her about going back to work on Monday. I basically gave her an update since I last saw her two days before my surgery and I expressed my plan of attack for work and for chemo involving new vitamins, etc.
I was supposed to go out more today, but the Tampa area had a lot of tornado warnings. The deluge washed away any notions of driving around town. Even HSN (Home Shopping Network) which is filmed in St. Petersburg was experiencing flickering power during their Martha Stewart Craft segment. Our portion of Florida was wetter than wet!
Kisses, Sprinkles
PS It is a bit past midnight and I am still wide-awake. These new vitamins are either weird or amazing! What do you think?
It all started with the question of a hat and this is what I opened the door to this afternoon:
This was Mark, my dear friend Sandy's husband, who picked me up at my aunt's house to take us to another great friends' home for a belated St. Patrick's Day feast. Sandy had asked him if he had a hat that he could wear to pick me up and before she knew it, he had delved deep into his bag of tricks to find a complete ensemble of the bowler hat, the strange glasses, the crazy teeth and the tux with button red lips on the collar. You should have seen the looks on my aunt and uncle's faces when I introduced him. It was a total scream!
I am always humbled by people's extra efforts. This is one pick-up I will likely not forget for a long time. The best part of this for me was the bowler hat...of course!
You guys know how much I adore my Aunt Maria. During my recovery at her home, I got to reconnect with her like we have not in a very long time...
On this day, I bellied up to the granite bar surrounding a part of her newly remodeled kitchen. She was in the middle of preparing Filipino food for a Filipina friend. I decided to search youtube for videos containing songs in her native dialect WarayWaray. After that I found songs in the main dialect Tagalog and in particular one of her favorite singers from back in the day Pilita Corales. I forgot what torch song was playing but the vignette of watching my aunt hunkering down grating coconut between her legs using this old school device in her granite and stainless steel kitchen was more than I could handle. You just can't take the Farmer Girl out of her!
There is a funny video with me narrating and laughing but I am not allowed to post it. All I have for you is a snapshot of my aunt sans the grater to show a portion of her new kitchen. If you watch the hyperlink on the device, you will see a similar one she was using.
Can you believe she just turned 66 years old? May God bless me with her aging genes!
What a difference a day makes! Yesterday, I was ready to tear pillows apart and today I am elated from visiting the cancer center where more people than I dare admit recognized me and said hello. It is kind of creepy when a volunteer greets you at the reception desk by your first name before you have even uttered a word. This part of the center sees about 100 patients a day!
The staple pulling contest was painless compared to last year's experience and barely lasted 15 minutes. A very skilled nurse practitioner who took the staples out also briefed me again on my surgery and she informed me that I had five hernia sacs extracted along with the mini tumors. WTF? She cautioned me against lifting heavy items for 4-6 months. I asked her about working out and she said that I should avoid abdominal exercises for the same amount of time. Believe me -- I felt fear so I will not do anything to undo or cause any new hernias for 4-6 months!
My surgeon gave me the okay to return to work on April 4th. Yes, I know it is rather quick. I pushed for the date and he said sometimes you have to agree with the patient. He remarked at how well I looked and I told him there was not "ooze" coming out of my wounds which made him laugh. I am not insensitive to the fact that I have to take things very easy. I have another appointment with him on the 13th to discuss my chemotherapy treatment more in depth.
This is what I know: my time during the infusion will be less. I will have Carboplatin again on Day 1 along with a drug called Gemzar. On Day 8, I will have Gemzar again. After asking him, he said I could conceivably work during those days if I worked from home and I wouldn't need an escort after the first day. Hooray!
AND...the hair loss question. My surgeon was Mr. Hedgehog when posed the question of hair loss. His hedging led to us laughing. It would seem that I would experience hair loss but not a total one. Since I have enough hair for three people (as verified by my two previous Korean hairdressers) I am hoping that my hair will just thin out and still look nice or I can wear scarves some days. Okay -- wearing a scarf without hair looks like you don't have hair; however, wearing scarves when you have some hair poking out looks stylish. Trust me because I never wore any of my scarves out last year!
I will also be making my way back to my apartment next Monday much to my aunt's dismay. She thinks it is too soon. I really need to get back to my own place and get back into the swing of things and figure out how to modify my penchant for lifting heavy things. My handbag and computer bag all have to be lightened. If you recall, I moved my living furniture around during chemo last year. That was probably one of the causes of the hernia sacs. There will be no hernia sacs this time around.
My aunt and uncle were hungry from leaving the house early without breakfast so I treated them to a late breakfast. Truth be told, I was the most vocal about being hungry, but by the time the food was placed in front of me, I was not hungry. Not sure why. I ate a third of my meal. A quick trip to an Asian grocery store was soon after before going back to my auntie's.
That's the State of the Sprinkles Union. I hope you're pleased as I am!
My plans today were canceled by my galpal which has sent my cabin fever into overdrive. Am I supposed to go out shopping and have lunch with over 100 staples still on my abdomen? I really don't care. I am recovering at my aunt's and have been been able to shower without help and do one load of laundry without help. The reliance on my walker is less and less so I can go out for a spell.
I just don't have time for cancer related activities!!!! There I have said it.
My goals are being pre-empted with all this cancer crap. Tomorrow morning I get to have all the staples extracted. I may even hear of which treatment plan my surgeon has for me. :::now with heavy sarcasm::: Let's get excited about chemo -- ooohhh! I will get excited later but not right at this very moment. Right now I am annoyed.
You know what I've found out? That full cable television is boring and is filled with mind-numbing junk. Ugh. Thank God I don't waste my money on this stuff. At my aunt's house, I have no choice but to surf 400 channels of brain-goo inducing programming.
If you haven't noticed, I am bored and I feel trapped. Maybe it is a good thing that Tawny still has my car because I would drive it right now against doctor's orders with this song blasting all the way up to the stratosphere: Sprinkle's Theme Today.
On Saturday morning, I was receiving a pedicure from Mary at the nail salon, when she said something in Vietnamese and then restated it in English about me being lucky because of the mole she'd never noticed before on the bottom of my left foot. It is? Cool. I feel lucky...
The words you have not read from me lately have been caged by time, not having enough of it. Work has enslaved me not to mention my social butterfly ways, my new hobby of quilting that I am learning from Kimmee and friend Cathy, my 5am killer workouts at the gym monitored by my awesome Jamaican-6% bodyfat-60ish male coach and by my deja-cancer surgery. Okay, the last part is in a few days.
The question "Are you fucking kidding me?" was something I repeated over and over last month in my surgeon's office. No, he wasn't. The rise in my protein test (CA-125) alarmed my doctor and had him ordering a CT scan of my abdominal area. That revealed an inflammation of two lymph nodes that were not there before. That was followed by a biopsy taken through my back with long needles.
Can you imagine Sprinkles recently napalmed (chemo) body being suddenly invaded by small tumors in her periaortic lymph node and the left lymph node side of her groin seven months later? Me neither! The good news was chemo, but the bad news was another surgery because of having to take another set of weeks off from work. I won't know if I am to lose my hair again. Testing of the tumors will determine that course of chemo. The hospital stay will be 4-6 days and I will continue recovering at my aunt's home for a week or two.
If you're feeling sad, please don't. I cannot wallow in self-pity because I am not a victim or live life with a victim mentality. God doesn't promise you will not go through fire, but he promises you peace if you will accept it as you walk through it. I have that peace and it feels so incredible. No, I am not impervious to the news, but I have accepted it.
What I first thought of as a set-back because of the physical strides I've made will be a set-UP instead. The hard work at the gym will make my recovery that much more bearable and quicker. My gym coach and I have a workout date as soon as I can manage it after the first or second chemo. These treatments will probably commence three weeks after my surgery. I will rise from weakness. There is no choice.
Meanwhile, I will be wrapping things up at work before they disable my access to the network. In a few minutes, my special "Team Sprinkles" surgery day labels will be wrapped around short 8-oz water bottles I am giving out while I am in the hospital to go with my special "Team Sprinkles" candy favor giveaways. Some people have wedding favors, I have surgery favors. That's how Sprinkles does it. I turn everything into some fun marketing opportunity. There will also be a tray of sinful chocolate cupcakes for my peeps to nosh on while I am in surgery and recovery. It can be breakfast food. (grinning widely)
Almost forgot...today I received good news about my thyroid. I spent the middle of the day giving vials of blood, having an ultrasound and meeting with my throat doc. The nodules are stable and I will see a different doctor in 6 months for monitoring purposes. Yeah, baby!
If you remember, please send me happy thoughts on Thursday morning. I have to check in at 5:15am and surgery is scheduled around 7:15am. Early bird day for several of us.
Perhaps it was a decision I made ahead of time. The "feeling of okay", I mean. Okay about my current state of hair. When I told my boss I had more hair than he this afternoon, he jokingly mentioned taking my wig off. I did.
The impulse that grabbed me didn't leave fingerprints. It was as if some invisible power had been waiting patiently for the opportunity of unveiling. My boss was shocked and so was Bridget. I called Michelle over the cube farm to come and see. She squealed happily when she saw me and immediately told me how cute I looked. Michelle even said I could pull off the short hair because I had my glamor make-up on. It made me feel good.
When the awe of surprise that had taken us all subsided, I put my wig back on. Embarrassment had nothing to do with it. They understood how I felt about having short hair and not being able to curl it yet with a styling iron. I looked like a completely different person with the wig off. And that's just it. I want to look like the me I know as much as I can until I can no longer hide the evidence of my recent journey. I will be forced to look like a different version of me again soon enough. By February 2011, I suspect I will lose the wig permanently and have the fourth incarnation of a look since January of this year.
I feel like I have given birth to myself. With a dark cap of hair and a blank slate to create my life, it should be more of a momentous occasion. No angels' trumpets heralded my arrival. There were no cigars handed out or a shower given. The realization came to me last weekend after my dad and stepmother left me after a short visit...
The wig is still in place until my hair grows long enough to make wearing it very uncomfortable. Combing magazines and surfing the Internet for a sexy yet edgy hairstyle have not yielded the choices I thought would be open to me. Mia Farrow or Jamie Lee Curtis I am not; I have a round face rather than a gamine one.
My body isn't the shape I want, but it is still healing. I didn't know it would take so long. Actually, I was told it would take long. I just refused to believe it. The one thing that makes me smile is I am able to bend down in half without any discomfort. That is a mini victory!
The vows to meet more people and do more different activities are being lived very well. Since I last posted, I attended an ovarian cancer awareness activity. September was Ovarian Cancer Awareness Month. I took the first Friday off and to help tie teal ribbons around park trees in downtown Tampa and to pass out 'symptom' cards to passersby. This activity also had me reconnecting with an old friend from eight years ago.
A young woman I thought I recognized had walked by me in the park during lunchtime. I said to myself that if she walked through the park again, I would talk to her. She did and it was indeed who I thought it was -- LisaK! It turned out that she thought she recognized me but knew that the Sarah she knew would never cut her hair to her shoulders. (See!) Long story short, we've reconnected in the last month and we are continuing to build our friendship again. Yay!
My weeknights have been spent out having dinner with friends and new groups of friends. I even went to a baseball game a vendor from work invited my team to last Wednesday. We received VIP treatment which was fun. The weekends for the month have been half busy unlike October which has all the weekends booked. It sounds pretentious but it is true. You tell the Universe your desires and it might just answer you.
The most important part of last month was my dad and stepmother's visit. To say I was apprehensive about seeing them again was a colossal understatement. They had also decided to make me their first visit on their tour instead of last which pushed up the dates to the end of September. It was a week's notice. Ugh. I had managed to avoid them for six years. Yes, six. Their presence reminds me of my (perceived) failures as a female -- no children and no husband. Out of six children between the two of them, I am the only one who has not been married and procreated.
Luckily for me, I had my shrinky dink appointment just hours before my parents descended upon me. The therapist reminded me that I have a connection with my stepmother that the other girls will not have -- cancer. She was right. We discussed our own journeys during their two-day visit. They arrived in time for lunch which I cooked. I also served a birthday cake I bought for my stepmom. It was to make-up for forgetting her birthday earlier in the month. She loved it. They checked in to their hotel later in the afternoon and came back so I could drive us to a legendary Spanish restaurant downtown for a very nice dinner.
I planned their second day visit with me. We went to a special art exhibit and a couple more art galleries by the beach. The late afternoon was spent meandering around Ikea followed by a casual dinner downtown. I would be lying if I said I had not enjoyed myself. On the whole, the reunion was great and liberating. It was a strong punctuation to the events of the last nine months.
Two of my sisters who live a couple of hours away had started an e-mail/facebook message campaign a week before my dad and stepmom came to visit. To this day, I have not answered them. You don't get to come in at the end and all of sudden remember I exist. Where the hell were you the last nine months?! My parents know how I feel about their recent attention that I am sure was motivated by their visit. I have since received another facebook message with a heartfelt apology on their deplorable behavior. A response may come from me. Not today. I have a forgiving and loving heart, but this is difficult. My silence is a reflection of the silence they have shown me. Even nice people have limits.
Before I forget, please say a prayer for Tawny and her family. Her mom is not doing well and is expected to cross over soon. Tawny, her sister and her niece are in Iowa right now for an emergency visit. This has been very hard on her and I just keep sending her my love through texts. Every little bit of love and prayer sent her way helps.
One of the things that has kept me cheery is spending time with my cousin's young children. They remind me of how cool childhood can be. I had made a shopping offer last weekend to 11-year old Kristen. To test her I told her she needed to call me the following Thursday to let me know if she could go. She did via her mother who confirmed our plans. Kristen spent the night on Friday and we toiled on Saturday shopping, lunching, watching a new movie and more shopping. This time she was not limited to minutes trying on clothes. It is a luxury when two younger brothers are around. The focus was solely on her this time. Later her parents and younger brothers stopped for the pizzas I had ordered for dinner on their way to pick her up. We scarfed down pizzas and some ice cream for dessert before they left.
I have been recovering today from a two-week nonstop whirlwind of activity. A blog update was also in order to let certain folks know I am still alive and doing well. I expect more spectacular adventures coming my way. Let's enjoy them together.
Love, Sarah xo
PS We need to bring some comedy back to my posts, too. I have had some comedy since my last post. It just doesn't seem appropriate today for some reason.
For two weeks now I have had this tune, Samba Da Bencao in my head thanks to the movie "Eat Pray Love". This song is first played when the actor Javier Bardem is seen in the movie. While the scene was memorable, the song itself holds more than its own.
Last weekend while in Jacksonville visiting Kathy, we tried to look for this soundtrack and gave up after five stores turned up with zero copies. I was desperate to have it for my three-hour ride home.
(By the way, the movie is not for everyone. It is definitely a chick flick, if you will. I've seen it twice - once with Dianne and her husband at the local preview two weeks ago and the second time with Kathy last weekend. The movie is two hours of brain candy.)
Back to the song...I was able to buy this earlier today and have had it looping in my car over and over again as I drive around town. It is incredibly soothing. The feeling it evokes matches the mellow mood I've been in. Yes, that means my period of adjustment is going better. I no longer feel as anxious with my change in schedule.
At work, my group has moved from the 8th floor down to the 7th floor. My boss remarked on how relaxed I've been with the new seating change. I wouldn't attribute my change of attitude just to that. Cancer has given me a new perspective on life to where a multitude of things that would have made me crazy last year no longer bother me. The feeling is rather freeing. Very zen-like.
I am realizing that I cannot move forward while driving my life at 100 miles per hour. The whole thing is a process that takes (ugh) time! Healing is about time. My body shows me everyday how much I am healing for the better. I feel so alive -- more alive than I have been in a very long time. I am humbled at each new discovery.
My hair is growing back fast with my eyebrows and eyelashes almost all in. The hair on my head will take more time but I can rub my head and feel my hair and not skin. Hooray!
The emotional healing is part of the process, too. I know I have to do the work to move forward. It is difficult as you know since the emotional part of you is something you have conscious control over. All I can say is that I am doing okay at it...
My calendar has managed to be filled with various activities where I get to both meet new people and reconnect with friends I haven't had a chance to spend time with since before my surgery and chemo treatments.
I got home late tonight from my friend Sandy and Mark's home. I spent a lively evening with their family and a set of friends eating a tasty dinner and sharing stories. November may find me camping with Sandy and her family by a river which I am looking forward to doing. If you know me, you know that my past idea of camping was usually a hotel without a pool. This is part of me saying yes to more opportunities.
Samba Da Bencao (Samba Of The Blessing) by Sergio Mendes (Baden Powell, Vinicius de Moraes)
E melhor ser alegre que ser triste Alegria e a melhor coisa que existe E assim como a luz no coracao Mas pra fazer um samba com beleza E preciso um bocado de tristeza Senao nao se faz um samba nao
Fazer samba nao e contar piada E quem faz samba assim nao e de nada O bom samba e uma forma de oracao Porque o samba e a tristeza que balanca E a tristeza tem sempre uma esperanca De um dia nao ser mais triste nao
Poe um pouco de amor numa cadencia E vai ver que ninguem no mundo vence A beleza que tem um samba nao Porque o samba nasceu la na Bahia E se hoje ele e branco na poesia Ele e **** demais no coracao
[Translation:]
Samba Of The Blessing
It's better to be happy than sad Happiness is the best thing there is It is like a light in the heart But to make a samba with beauty It's needed a bit of sadness If not the samba can't be made
To make a samba is not like telling a joke And who makes samba like this is worth nothing The good samba is a kind of prayer Because samba is the sadness that sways And sadness is always hopeful Of one day not being sad any more
Put a little love in the cadence And you'll see that in this world nobody wins The beauty that a samba have Because samba was born in Bahia And if today it is white in it's poetry It is very black in it's heart.
I hate it when my shrinky dink is right. She predicted that I would be going through a period of adjustment now that my schedule is not around my cancer treatment. It's not that there is a giant chasm, it is just different. Ugh.
Different has its own connotations -- one of them being I am on my own again. I don't have that other 50% of a relationship (doctor) to rely upon on a regular basis. The universe hates a void so it fills it. I am busier than ever with all kinds of activities. It is my new mantra to say yes to more things coming my way.
Tomorrow morning I am getting a second opinion on my thyroid at the cancer center. Yes, I know it is benign, but this is for the surgery portion that a doctor outside the center suggested. On Tuesday night, I will be attending another meeting for an Ovarian Cancer support group that meets once a month. I've volunteered for a couple of things just be to active. Thursday night will find me at a dining group for professional women my friend Possum has been a part of for years. I've turned down her invitations in the past. It is a part of me 1) expanding my net of acquaintances and friends or sphere of influence and 2) saying yes to more things. And then -- next weekend I will be in Jacksonville to spend the weekend with galpal Kathy...
I have missed writing terribly. Writing allows me to share what is on my mind with those who care to know. Things have not been easy lately even though I should be singing like Cinderella who just found out she is going to the ball and has all the forest animals sewing her a dress. The news of my remission should make me feel like that now, right? It is humbling and believe me I am ever so grateful. The pressure now is immense at times. I am dealing with it the best way how -- through humor.
Some news...my hair is slowly growing back! It is almost 1/2 of an inch on top. My brows are in, but my eyelashes are only half-way back. Other hairs are coming back, too. LOL
My shrinky dink has suggested ONE thing. For those who know me, it will send you laughing up and down the street. She didn't say in so many words, but I apparently need to be more demure. At odd moments I find myself chanting silently within, "I am practicing being demure" over and over again. It makes me want to tell her off.
THIS IS THE LETTER MY DOCTOR WILL BE RECEIVING NEXT WEEK ALONG WITH A CARD.
----------------------------------------- July 21, 2010
Dear Dr. R-----:
This note is from the “groovy girl” who has brought you decadent treats during her last three cycles of chemo…
Today you said that words that have affected me more than anything you’ve said to me in the last six months, “You’re in remission.” I knew that would be the case, but hearing the words from you still stunned me. You’re very lucky I didn’t grab and hug you as was my first instinct. I saved you from awkwardness by reminding myself that you most likely appreciate your patients better under anesthesia. I don’t think it is because you’re afraid to connect with your patients, but because it is easier to deal with the facts of science and lab results rather than the emotional product of your findings and treatment options. The cerebral part takes over because it is what helps cure your patients. This was good because I didn’t need you to coddle me. I needed concrete facts to distance the emotional side as well.
At 39, I never expected to have cancer. Who does, right? I have approached my cancer with a project plan so I could keep the focus on what I needed to do to have minimal side effects and how to manage my energy each day. There was also an edict to my family and friends that I would go through everything with humor. That is where being “chemo sexy” and living the “glamcer (glamorous cancer) life” have come from. Even my chemo sessions were “happy hours” because you gave me “chemo cocktails”. The cute names do not by any means diminish the gravity of cancer, but they sure make it more bearable and less frightening. To me, it is what is so why not make it fun? Why be boring? Other people have ‘boring’ covered. You don’t even know the half of the crazy things I came up with to cope. Even my eight-day hospital stay was fun with tons of visitors, cello player, visiting pets and caring expert medical staff! Spending my 39th birthday in a hospital bed was not bad at all.
The first day I met with you was the same day I had my pre-op. A nurse in pre-op said you were chosen for M------. That gave me comfort that I would be in good hands. Nothing like a rock star oncologist, eh? Don’t blush. Your other nurses like you and tell on you. That’s how I knew you loved chocolate. They also said you were a runner which made me feel confident to bring you treats that you could work off. Ha! Besides – I thought how different would it be if your patient gave you something other than a look of apprehension as to how she is progressing.
What am I trying to say with all this? Sometimes doctors do not get a sense of a patient’s real thoughts especially with the quick clinic visits. Getting into my mind involves a few martinis and a bucketful dirty jokes. Once again, I have spared you. Well, good doctor, I want to say thank you for saving me. Thank you for helping me reset my life. I intend to live it with more verve. The serendipitous way I came to M------ is a testament as to how much I am wickedly blessed. You are one of those blessings. I am so lucky!
While I have enjoyed the Brazilian you’ve given me through chemo, I have not liked the Skinderella/Baldilocks hairstyle or the eyelash suicide. So until I see you again for my three-month visit, I am focusing on growing hair.
Thank you, Sarah
PS Thanks also for saying the toast to my health and favorable CT scan right before my last cycle of treatment. It worked! ----------------------------------------- Yes, my lovelies -- I am in remission. Thank you for support and prayers. Every little bit helped me heal. xxoo
Now my taste buds are rebelling. At the beginning of my chemotherapy, I couldn't get enough of sour or Mexican food taste for weeks and weeks. Today, I realized through deduction that I can't taste sour.
For the first time during chemo, I have no real appetite. I mean -- I am hungry, but I don't have a "taste" for food. Nothing really is appealing at the moment with the exception of salty and sweet. It is the oddest thing.
It was first noticeable on Saturday and is still noticeable. I woke up with a craving for waffles and sausage which luckily I had this morning. Although I worked from home today, my boss and new director picked me up for a Greek lunch and I couldn't taste the tang of yogurt on the tzaziki slathered on my lamb gyro.
A couple of hours later, I had a specific craving for jelly doughnuts. I don't eat jelly doughnuts. I instant messaged my boss that I had to go to my apartment complex office for several minutes. Instead I drove to the nearest doughnut shop. The two pillows of doughnuts stuffed with strawberry jelly were like ambrosia. I felt guilty.
For dinner, I decided to get a famous chicken sandwich. Their chicken is marinated in pickle juice and their sandwich has pickles. Too bad the sandwich tasted bland today. I usually have their waffle french fries dipped in mayo and ketchup. That tasted bland, too. So no sour taste for Sprinkles.
I hope this doesn't last long or I will be losing weight for sure. This normally would be good, but I'd like it on my terms. I may need to pack an extra protein shake tomorrow for work.
It was the day after my last chemo and I was feeling like other 'Saturdays after chemo'. I needed some assistance driving to attend my goddaughter Cristina's 18th birthday. She and her twin were celebrating across town. Tawny was kind enough to drive us. (Everyone needs a friend like her!)
Here is a pic of gorgeous girls:
(Crystal and Cristina)
It seems like yesterday I held them each in my arms like little burritos. Ha! I am so proud of them. They have one more year of high school. They inherited a learning disability that affected them until about the age of five and held them back one year. With intense education and help, they are up to speed and are smarter than their classmates! They will be attending college for pre-med. This summer will be spent volunteering at their local hospital as part of their scholarship. Like I said, I am very proud of them...
Am I coming of age, too? My chemo is done. I just have some follow-ups to make sure everything is clear -- God willing! I am starting to really take a look at the second half of 2010 since the first half was spent with two surgeries and six rounds of chemotherapy. I feel an intense need to perform and give back. I do have some plans. I just have to get my strength back up to be able to really give them life.
My 40th birthday is coming around in January and I want to be able to say I did something significant or the start of something significant. Yes, I know, I have influenced many people already in my life. I am talking about something special borne out of the ashes I will rise from this year. Can you understand what I am trying to say? I don't want my cancer journey just to be a blip in my life's radar. I want it to end up a beautiful adventure for me and for others. I can't explain it yet maybe. All in good time.
My last chemotherapy was today and I almost could not believe it. I can take down the countdown counter I've had for almost three months on the right hand margin of my blog. It was a day for extra adventures for sure!
I got up at 5am, got ready and wrapped the cake pops I made for my surgeon before making breakfast for my aunt who stayed over and Tawny who came at 7:30am. As we were walking out, my aunt was distracted from the large leaf plants outside my apartment and then took a tumble on the pavement. She nearly gave me a heart attack! She was okay and mainly felt bad because I gave her such a worry that I was raising my voice at her (with curse words) on the way to the cancer center. Tawny was the referee and told me to pipe down as I drove us which was only less than 10 minutes away.
My blood was taken for the tests results my doctor would see an hour later. We went to get my refill for aftercare meds and then we sat by the cafe for a few minutes before the research worker found me and said if I checked in early I could get done in time so that I could have my stress test in time. She admitted she had to go a wedding a few hours away that evening and had to be on a time schedule. I didn't mind because so was I.
Off we went to check in early. A nurse soon whisked me away for vitals and then let me back in the reception area with the girls. We didn't have to wait long for me and my entourage to be escorted to a bigger exam room. A different doctor asked me questions and did the physical exam. She pressed against my lower lymph nodes and I giggled a lot because I am very ticklish which made her giggle, too. For a woman, you'd think she'd be more gentle on parts she has, too! My surgeon has really big hands and I have never felt any discomfort with his physical exams. AND AND AND -- she used latex gloves before I realized it. Guess who is allergic to latex?! She left to get my surgeon so I could complain to the girls.
My surgeon received about 30 cake pops. My aunt helped me make mine with chocolate cake and frosting mixed together, rolled into balls and chilled. Lollipop sticks were then dipped into melted chocolate and inserted into the balls before chilling again. They were then dipped into more melted chocolate and placed into mini-cupcake liners. I found four different colors in a polka dot pattern. These were on a tray to let set overnight.
In the morning I packaged them in to cellophane bags and put silver twisty ties on them. I also added another layer of mini-cupcake liner before packaging them for aesthetic reasons.
This is the end product my surgeon received. I placed some red crinkly paper inside a red tin before placing 30 cake pops inside. A giant cellophane bag for baskets was then wrapped around the tin and then adorned with the red with white polka dot satin ribbon. My surgeon loved it!
Tawny and I had stopped at Ikea on Wednesday night to get an apple-flavored sparkler drink for our faux champagne toast today. I had to take this picture after we got back home. Sometimes the big events in your life is about creating an "experience". I know today I created an experience for me and perhaps for the first time for my surgeon. How many patients would think to bring faux champagne and plastic champagne glasses to celebrate her last chemo? He did the honors of toasting us. I loved it!
I had my stress test which went well. My entourage looked on while I was hooked up to various electrodes and breathing masks Afterward, we picked up lunch from the cafeteria on the premises to bring back upstairs outside the chemo section. We wolfed down our lunch because we were hungry and everything was good. I was happy to not to have to rush my lunch for once before my chemo. You may recall that I am usually rushing against the anti-histamine drugs before my chemo cocktails. It makes me sleep no matter how hard I fight it.
Here are some views I will not miss:
This is the area of my port on my upper left chest. A one-inch needle is inserted and connected to tubes that is connected to other tubes for my chemotherapy.
These are my actual chemo cocktails. Two bags come before these for pre-meds. The total actual drip is 4.5 hours except today. More on that later.
These machines keep track on how much time is left and beep if there is anything wrong or when the bags are empty.
This was a view from my chemo chair as evidenced by my running shoes. The chair across the way is what the chemo patients sit in. I need two pillows to sit comfortably -- one for my lower back and one for my head. The chairs recline to give your legs support, too.
Halfway through my last bag of chemo, I had an allergic reaction that could have been really serious had my nurse not come by for me to ask about the temperature of the building. I was felt hot. I then told her I felt like I could breathe through my nose, like I had a cold. My chest was heavy. She asked me if it was getting better and I said no. She stopped my chemo and gave me oxygen tubes for my nose.
My nurse ended up calling my surgeon and he said to stop it completely and give me some more of my pre-meds for the allergic reaction. (This particular cancer drug shows some allergic reaction in some patients during the seventh cycle. Super overachiever that I am, showed it in cycle six.) I told her I needed to empty my bladder which she said would give her enough time to get another IV bag set-up. Another nurse escorted me to and from. When I got back my aunt was sitting in the chair with a worried look in her face. (I could only have one guest at a time so Tawny and my aunt took turns keeping a vigil or sat outside together why I slept through my chemotherapy.)
My face had been swollen and flushed. Within minutes of receiving the anti-inflammatory drugs, I was relieved to breathe some and the heaviness in my chest was gone! Wow. It was amazing and almost instant relief. The bag was only for 15 minutes. By this time, my aunt had gotten Tawny who was allowed to sit by me. Tawny knew I was getting better when I was giggling again. We stayed an extra 10 minutes just to make sure I was back to some kind of normal.
Tawny drove my car to a Mexican restaurant where we met her husband Jeff for dinner. Jeff left after our dinner to deliver something downtown and us girlies went to my favorite place for boba drinks, slushy fruit drink smoothies with tapioca pearls at the bottom we brought home.
This day went very quickly. My aunt and I talked about the whole day after Tawny left. She spent the night again on my couch. I made it to bed determined to get seven hours of sleep and to take my medications in time in the morning.
My lovelies, I am relieved. I have a CT scan for my chest and abdomen in three weeks to see if there is any cancer left lingering within my body. Another week after that is the appointment with my surgeon to discuss the results. Before that, next week, I receive the results for the thyroid biopsy from this past Wednesday morning. I don't anticipate anything wrong with that. My nodule is 1cm large. When you're a cancer patient and anything else crops up, you can guarantee there will be some kind of further investigation to rule out anything. This is my story and so far I am okay with it.
Thank you for my love and support! I am wickedly blessed.
Changes at work and my feelings of fatigue have kept me from updating my blog. I thought about it each night, but I knew I just had to rest to manage my energy...
Our temp is gone now; her last day was Tuesday. She was re-hired temporarily because I was going through my chemotherapy. I now find myself busier than ever. I would love it extra if my brain and fatigue would cooperate, but I just do the best I can.
For the past three days, I've felt so much better. My good energy has been extended in the evening. You can't imagine how wonderful that is! Yesterday I left work at 7:30pm and still had enough energy to go grocery shopping by myself until 9:30pm. Dinner was served at Sprinklesville at 10pm. Not too bad...
This morning I made the resolve to see my hairdresser Tania so I could get a couple of packages of Korean brand faux eyelashes. She was ecstatic to see me judging by the long hug she gave me. As we talked and I updated her on things, she couldn't keep from hugging me. She ended up giving me four boxes of eyelashes and trimmed my wig a little to her satisfaction for free.
Tania is a very Christian woman. She kept telling me how great I looked and how she could see an inner glow about me. I told her I was wickedly blessed and she agreed. I was humbled when she told me that I have a rare heart especially when I can go through what I am going through and still find a way to give to others. She had no doubt I would receive continued blessings.
My next trip was to the craft shop to buy some components for the gift for my surgeon next Friday, my last chemo. Oh -- I didn't tell you -- Tawny is coming to my chemo along with my aunt. I am very excited to have both family and friends represented. Tawny is working extra hours to make-up for taking the day off. I appreciate her sacrifice for me.
For my last chemo, I am buying some sparkling cider and some plastic champagne glasses to toast with the girls and my surgeon. I can't wait to complete my last chemotherapy, but I am reticent to see how I will feel the following week as the chemicals work through. Sigh. I just have to get through it.
I also have to get a biopsy on my thyroid next Wednesday morning. My primary care determined to rule out anything that may be there. I had my ultrasound at a separate facility last Tuesday morning and in the afternoon I received a call from my primary doctor's office with the recommendation. Many people have benign nodules on their thyroid. I am releasing my feelings on the outcome whatever it may be. There is no reason to worry about something I know nothing about right now. I just make the necessary appointments and show up.
This evening was time for some fun. Jeff and Tawny came over for dinner and Scrabble. I made a creamy lemon garlic chicken with pasta and broccoli and some garlic bread to go along. We feasted like kings! Oh my gosh was everything good. For dessert, I scooped some fudgey chocolate ice cream and for a lame attempt at healthy, I topped each heaping bowl with fresh raspberries. Hee.
We went two rounds of Scrabble. Tawny and I each got to start the board. For some reason, when we start the board we are actually able to branch out, but when Jeff starts the board, we get pigeon holed into a corner of the board. Next time, we are playing with nine tiles each instead of seven to make it more interesting.
This coming week is jam packed with stuff but I will try to update you with something even if it is just with pictures. I am doing mighty fine thanks to your prayers and support.
Today was the worst day of my chemotherapy history. I woke up with my limbs feeling like they were on fire and movement felt like I was wading through gelatin. I was in pain and I was disoriented. I cried.
I looked at myself in the mirror thinking that today would be the first day I wouldn't put on make-up and eyelashes because of the pain. One long look and I said to myself, "Hell no!". I would do everything I could to dig within myself for the strength and I did.
My first order for the day after struggling to get dressed and made-up was to see my therapist. I had to tell her that I wasn't up to par with my health. She walked with me slowly and allowed me time to get situated. I felt disoriented and extremely exhausted. The session went well and, yes, I cried. We talked about the major hurts or key moments in my lift that affected me. It felt great to unburden myself...to let it all out. Emotional freedom is priceless. I was reticent about checking my make-up in the mirror after our session --- it still looked fabulous! No messy mascara or eyeliner painting me with raccoon eyes.
I drove to work instead of going home as a normal person would have. I just kept digging for Divine Strength. Being at work was difficult. I suffered from pain, exhaustion, dizziness, hot flashes, a buzzing in my brain when I didn't have dizziness and vision impairment akin to having flashbulbs going off in your face. I walked along walls with one of my hands hovering over them in case I lost my balance. Chewing my lunch was painful but I managed to finish. I could not deny I was feeling unwell and put up a brave or sunny face. At some point, I had to ask Michelle in front of me to get me water. I couldn't believe my body was reacting to the chemo coursing through my body this way. Thank God the afternoon progressed for the better before I picked up Tawny at her work at 5pm.
Why is it I am always surprised when I feel unwell? I guess I am used to being a force majeure where I just do things without thinking of limitations...when I am of my right or confident mind, that is. Truly -- it is always news to me when I wake up feeling extra unwell or feeling exhaustion just by walking from my car in the garage to arriving at my desk on the 8th floor of my building. My friends remind me that I am going through chemotherapy for Stage III Ovarian Cancer. It is not that I forget -- believe me! -- I am just not allowing it to run my life. I am not it and it is not me. My mind is a 'go' even if my body is protesting along the way. Some time very soon my body will be mine again.
I looked at my face this morning with dismay. It was literally a white canvas. My porcelain features blurred among each other. There were barely any telltale signs of my eyes other than two dark brown eyes staring back wondering what the hell had happened. You can't imagine how much eyebrows and eyelashes matter in outlining your facial expression. My skin was so pale from lack of sun and the chemo was probably not helping. I almost cried at the effort it took to reveal the face that is mine through powdered colors, kohl and faux eyelashes. My body tired easily and my vision a bit strained. I wanted to break the mirror in front of me.
Like I always do, I managed to keep my composure and finish dressing. No one would guess I am a cancer patient at first or second glance. No one would guess at the effort it took to not look like that now. I often wonder how my friends who don't wear make-up would handle having an anonymous pallor. Would they give up? Would they try to find themselves in the mirror? Would they just not think about it all? I think about it all the time. For me, I am still a vibrant woman inside and I want to show it. GLAMcer. There is something to be said about sex appeal even if it is only for yourself...
Our network has been intermittent at work for a week now and today it was confined to my side of the 8th floor. The first half of the day was wasted not doing much but trying to get connected. Just as well. I kept getting dizzy spells and my brain was fuzzy still. Managing my energy was a challenge. When I went to the restroom, I walked close to the walls for fear of falling. People were supportive and knew I had just gone through my fifth chemo appointment last week. They, too, were happy that it is almost at an end. I am just happy I made it home okay and was able to make dinner for myself this evening.
I am dizzy right now and may not be able to proofread this post well. You'll pardon the errors? On top of that, I am now experiencing a hot flash as I type. Goddammit -- as difficult as today is, I know this is all worth it. In a couple of months, I will have a ghost memory of how I feel at this very moment.
Listen, my lovelies: I cannot wait to not take any of my aftercare chemo meds again in my life. We have one more round to go at the end of the month. Even though I did not work today at all, my brain was still in a fog. That didn't mean I was lazy -- I vacuumed, did five loads of laundry, cooked for myself, made some calls/appointments, cleaned the refrigerator a little, took two bags of trash out, and ran the dishwasher. I'm battling cancer -- what's your excuse? Ha.
I spent Saturday by myself just chillin' and managing my energy to rest from the chemo. On Sunday, my aunt and uncle drove me with them a couple hours away to my cousin Frankie and Brenda's house in Port Charlotte to spend time with more family members visiting. Counting all the adults and children, there were 17 of us. Most were in the pool playing. Several of us were enjoying the view of the water and the family in the pool. Grilled out with kebabs and other goodies. I ended up taking a nap on the couch for a spell.
On the way home from the festivities, I begged my aunt and uncle to take me to a quick grocery shopping trip so I could buy some almond milk, raspberries, oranges, vitamins, etc. since I won't be able to drive until Wednesday. I could cry to Tawny to take me earlier I suppose. Hee. This morning I made a smoothie using almond milk and fresh raspberries! Yummeeee.
Pardon me if this post is a little wacky. Like I said these meds make me crazy. There is mindmeld going on but I am not sure exactly how that is working. If you know, please clue me in.
Okay....I did have a breakthrough today. My spiritual adoptive sister in Canada gave me one part of the words I have been searching for during my cancer treatment. We have similarities in life things and that's all I can say. What I can say is that it came to me after reading her response to my specific query on my partial lack of emotional connection to cancer...that no matter how I dress things up in cancer or other unpleasant things in my past life, they were or are still unpleasant.
I cried uncontrollably for a good part of the morning and again in the early afternoon. While the tears fell, I could hear the pure hurt emanating and leaving me in my sobs. It didn't sound like me. It was alien like an animal left in the clearing in the woods by wolves who had taunted it by tearing bits of pieces of its flesh, but never killing it before leaving for real game. It was awful and cathartic. God -- I cannot wait to tell my shrinky dink this Thursday morning. My doctor will be happy to hear this.
SIGH...I want to write more, but my brain and these damn drugs are making it difficult. That's it for now. Thanks for your support. Your love around the world is helping me become well to the astonishment of many. Love does make this Asian Goddess of Love go around or at least sparkle!
Unsure of how I felt today, I continued as if I were sure of myself and how I would deal with my fifth and second to final infusion of chemotherapy...
I got up and took my water pill before getting online to read a bit and getting on facebook to update "my status". For my breakfast, I ate a chopped avocado like cereal by adding almond milk and two tablespoons of agave nectar (low glycemic sweetener). Then it was time to take a shower.
At 6:30 I received a knock on my door. It was my uncle who had come to pick me up. He was an hour early! OMG. My aunt told him the wrong time. I still had to put my make-up on, get dressed, vacuum, and make sure I prepare my bag for the day. Sigh. No worries. I adjusted. I decided to skip vacuuming and made my uncle some fresh coffee instead. He drank coffee and watched the news while I got myself together.
My uncle was not spending the day with me at the cancer center -- just giving me a ride. This would cause me great stress as I would worry if he was entertained enough or was eating enough. I turned down Tawny's husband's offer to take me, too, as I would feel the same way. I was stressed when he took me for Love Chemo #3. He was working part of the time during the day and I got worried if he was missing something important when we moved from one part of the building to the next as we progressed through my day at the cancer center.
Men get bored easily and need constant forms of stimuli as well as usually have some form of Attention Deficit Disorder. I don't want them to feel like martyrs or taking one for team. This is ingrained behavior from childhood...to wait on men. Jeezus -- sometimes I wish I didn't fully nurture this gene, but that's the way it is. Why? Because it is stupid. Good for the men in my life though. Bastards. Ha. OKAY TO BE FAIR -- I treat all my friends/family this way. More on this later...
I carried this basket of cookies as a gift for my surgeon and his staff:
Eight designs and everything on the cookie is edible:
I had the nurse who took my blood draw pick one out. She was working the check-in desk, but took time out to draw my blood at my request. We've gotten to know each other and she gave me a spontaneous hug before I left. It made me smile as I made my way to pick up a refill prescription before a small break at the cafe. My surgeon appointment check-in was 30 minutes away.
Like last time with the bakery box filled with chocolate ganache cupcakes I made, I got curious stares and a worker was curious enough to ask and show the other workers at the cafe. One of the ladies behind the counter wanted me to make one that said CANCER SUCKS. Why the hell would I do that? Yes, we all know it does, but why feed others words that are negative? I am all about moving away from fear and moving towards joy. It can be a difficult journey so I am not adding that ever.
Actually seeing my surgeon was later than I had hoped. I don't like delays. There was no student doctor or any other doctor to see me before my surgeon. He was it and my favorite nurse attending me. (I told my nurse who happens to be Russian all the Russian words I knew and was complemented on my pronounciation -- yay!) My surgeon is very pleased with my progress and seems surprised at the low presence of side effects with the exception of increasing fatigue. He doesn't fully understand how I've taken it on as a project to mitigate the side effects as much as I can through diet, supplements, sleep and behavior modification. I am a research fanatic.
I asked him some questions like:
1) Can I consume alcohol? Yes -- I can have a glass of wine if I want. 2) How long are the chemicals in my system after my last chemo? Six to seven weeks. The fatigue could last much longer. Grrr. I intend to be the exception not the norm thanks to the overachiever I am. 3) Did he enjoy my chocolate ganache cupcakes from the last visit? He looked at me with a half smile and said he very much enjoyed them and said that I definitely have a talent. Gawd..If he only knew the craziness I am capable of at any given moment! He seemed a bit embarrassed which I took as he ate a few too many even though he shared with his staff. There were about 30 of them. LOL
I was worried about my food intake today because it is advisable to have a full tummy during chemotherapy. I had a protein with fiber shake before my exam and ate a special granola bar while I waited to be called for my chemo. Serina didn't come to take my lunch order as she's done for all my treatments so far. I found out later when she came to see me that she was swamped at work. It was no big deal as the infusion center provides bagged lunch choices.
There was a delay for my chemo which I suspected because my surgeon was delayed as well as the floor was short of staff. This both upset and pleased me. It upset me because I wanted to get out at 5pm and pleased because I didn't have to rush through lunch and it had some time to digest. This must be key for when the Benadryl drip was administered, I wasn't as immediately sleepy.
Before my "chemo cocktails" were facilitated, I wrote my friend Jill a note and placed it on the counter next to me with a bottled water, one of my cookies and a small piece of chocolate. It was waiting for her when she arrived at 1:30pm when I was already asleep. (See what I mean about nurturing????? I always think of ways to make feel people appreciated and special. What you give out to the universe is what you get back. I get back a ton!)
After a bathroom break during my chemotherapy, I was able to see my fellow GLAMcer friend sitting in one of the infusion chairs. I visited for about five minutes. She gave me her professional card and added her e-mail and cell phone number. We are going to make walking dates after work since we work around the same area AND we live near enough. Talk about cool bananas!
During Jill's visit, I managed to stay awake longer than previous times. We laughed a lot. She was stunning as always. She left at 4:30pm to pick up her kids. It was like the changing of the guard. Serina came for a short spell at the same time. I urged her to go home and wash the day off with a shower. She looked exhausted and frustrated. Serina received two cookies to take home.
All my drips were finished by 5:30pm. My aunt and uncle were waiting for me outside. They drove me home and stayed a little over an hour. My uncle looked tired from waking up too early and from his exercise at the gym. My aunt brought me some food so I wouldn't have to cook that night or a few more meals. She is very sweet. I brewed them coffee and gave them a piece each of the cookies I made which makes the amount of cookies Sprinkles has in her home to zero.
I spent the evening reminiscing about the day and just relaxing. Ended up snoozing on the couch for a few hours before washing the day away. I wholeheartedly recommend taking a shower at night every night to wash any negative energy you've taken on throughout the day whether that is contact with other people or of your own doing. Why would you want to take all that crap to sleep and marinate in it? Of course, I take a quick shower in the morning, too. It just makes me feel good.
Overall, my day was great! Thanks for all your facebook comments & facebook private messages and supportive e-mails, my lovelies. Every bit helps me get through the day.
Hugs and Kisses, Sarah Sprinkles
PS...My friend Jill said something more unusual than she does. When she opened the package of cookie and tasted it. She said it reminded her of me. Huh? She said she could close her eyes and immediately knew it was me. The flavoring she was tasting were vanilla and almond extracts. The cookie itself was not overly sweet because of the added royal icing or hard sugar icing on top, but there was definitely butter. Hee.
Born in the Philippines to a Filipina mother and a US Military Father. Emigrated to the US in Jan '82 at age 11. This is my third time living in Florida. I've also lived in Wyoming and Chicago. My early ambition was to be a 'Solid Gold' dancer married to Deney Terrio of 'Dance Fever'...never did happen - HA! I've been told that I am too creative for my own good. Why be boring? Other people have that covered. My wit feeds on serious crack. Laughing ranks in my Top 7 Activities. Of course, Loving and all things of Love is Number One...We need to cherish the people in our lives for our earthly time is short-lived. Worrying about stupid stuff that do not matter just gives you wrinkles. Try something new - go on that adventure afterall. You never know where it may lead you.
