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.
Do you remember the last time I cooked a meal for visitors that didn't involve my chemotherapy? Me neither. Tonight was the first time since last year I am entertaining purely for fun.
I started out early by going to do some shopping and ended up at the grocery store. By the time I finished around noon I was wiped out. I put my groceries away and ate lunch before taking a nap for some recovery time.
Tawny and Jeff came at 6pm to enjoy a home cooked meal of broiled marinated flank steak. It was accompanied by seasoned green beans, a wedge of cold lettuce for the quickest and simplest salad and my lazy (yet healthier!) mashed potatoes. Red potatoes were boiled until fork tender then placed on a sheet pan lined with aluminum foil and drizzled with some olive oil that has been spread out to coat pan. I then smashed each potato with a potato masher once. More olive oil was drizzled on the bed of mashed red potatoes followed by a good seasoning of kosher salt and freshly ground pepper. Finely chopped fresh rosemary was sprinkled on top for flavor. The oven was heated to 450 degrees and the potatoes were cooked until crisp about 30 minutes. I added some chopped red pepper and scallion rings for color and a fresh finish before scraping the potatoes off the sheet pan and into a large serving bowl. Yes, all of it was yummy!!
For dessert, I made what I now call my Raspberry Angel Napoleon. I sliced angel food cake and layered them with sugar-free whipped topping and fresh raspberries. I topped each serving with shaved 70% dark chocolate and some disco dust because I like sparkly. You've heard that before, haven't you?
The rest of the evening was spent playing Scrabble. We did two rounds that involved painful deliberations from Jeff. Where I play for a certain flourish with words, he was playing for high points. He won both rounds. Bastard. Ha. At some point when there were less tiles to choose from, my letter choices started to spell out Russian words or for Tawny what she perceived as Vietnamese words. She did have one set that spelled out "SO NASTY" and used the word NASTY on the board.
I was very interested in playing with these two brainiacs since we have never played Scrabble in the 12 years we've known each other. More importantly, I wanted to spend some quality and normal time with them. I am sick of having our only communication via instant messages or cell phone texts. It is just not the same when you are in person. Our recent get-togethers have also involved something with my cancer treatments. My treatments are almost over and I need to start transitioning into normal. I don't know if that is the appropriate word because my life is no longer normal and I can never return to what I knew as normal...
Cancer changes your perspective in life. It makes your world both myopic and expansive. Myopic in the sense that it weeds out the bullshit that used to bother you and expansive by lowering the fence on what you can accomplish. Things I thought I could not do before are doable. Getting back my health -- my strength and building upon that will be key. I've staged mini-milestones (in three phases) for myself for the next six months. Of course, the milestones need to be flexible because I don't know how my body will react to my last set chemotherapy. I believe I've built enough of a cushion before the second phase. The skeleton plan so far makes me feel good of what I can do to get ready to shape the future life I will lead. There is no word beatific enough for me to describe how I've imagined that life will be.
It is official. My eyelashes are committing suicide. Thanks to the compound effects of chemotherapy, I am now almost devoid of most of the hair on my body. Should I rejoice and think of it as shedding my coat for the summer?
You're probably wondering why I haven't posted. To be honest, I haven't been feeling well. It is taking me longer to recover and has progressed to an extra 7-8 days than normal recovery. Today was the first day I felt more like myself. It is disheartening but I know it is temporary. I just have to make it through two more chemo sessions next month.
I saw my shrinky dink last Tuesday and that time is helping me tremendously. The doctor gave me another assignment. I am to write down all the hurt I have experienced. Mulling through the pain is not the idea, but to write down incidents. I can handle that since our sessions have revealed that I am not dealing with the emotional side of cancer. We are tackling different areas of my life to get to that point...kinda working from the start to get to the present.
Another revealing thing is that I don't share deeper thoughts with my support team because I feel guilty for dumping on them. Sometimes when I talk to Angie, I can tell the things I talk about maybe too heavy for her to handle or maybe it is just me? I don't know. Don't get me started on Tawny -- I've hardly shared anything with her lately because I feel tremendous guilt for leaning on her when her health hasn't been stellar and the fact that she has already given so much right after my surgery. Kathy's been there to listen but I still don't share everything. I tend to keep things inside my head.
Sometimes I think that my support team all live too full lives to listen to things that may be bothering me now and they are too emotionally connected to me to have answers. Face it -- no one prepares for cancer. It is not subject matter that makes people happy. Now I have my shrinky dink and I can dump on her as well as get the answers I am in search of when we meet every two weeks.
I also saw my primary care doctor the same day for refills on my water pills, to get high blood pressure medication and to discuss what the cardiac surgeon saw on my CT scan in regards to my thyroid when I went to the emergency room last month. Everything was addressed but the thyroid because they didn't receive a copy of the scan in time. More blood was taken and the results have since come out clear. That's good. I will have to call this doctor again next week about the thyroid.
God... Talking about medication and cancer shit does get old. I can't help discuss them because they are what is going on in my life. The days that I no longer have to focus on them cannot come soon enough. Watching my hair grow after this summer will extend those thoughts a little longer I'm afraid.
For now my wig hides my bald head. My faux eyelashes and darker eyeliner keep my eyes visible. The make-up keeps me looking glamorous and healthy. My friend Dianne told me this evening how jealous she was at how fabulous I looked with my make-up and faux hair. I am doing everything I can to hide my anonymous pallor. Luckily, I haven't lost my humor about things. Crying about them seems like a waste of time. Someday this will all be a faraway dream.
I didn't mean for today to be another race against my meds, but I had no choice. Today was Kathy's last day at my place before she went back to her 2.5 hour drive up to Jacksonville. Her boyfriend Jamie was leaving on vacation the same afternoon and had to be home for their pets. I wanted to maximize my time with her.
Kathy kept joking about my energy. While I let her sleep in later than I did, I was moving around my apartment in stealth mode. None of my doors squeak in my apartment thanks to some special household lubricant called WD-40. Squeaky doors are bad feng shui -- means that energy is stuck in that areas of your life.
I made us a big breakfast and she expressed her desire to go to the Asian store later to buy some Asian veggies which I happily agreed on. We spent about an hour meandering about busy Asians getting their groceries before picking up sandwich orders for us and Tawny/Jeff for lunch. Jeff wasn't able to make it because he was still doing some pesky work for my company on his computer. This poor guy worked all weekend!
When lunch was over, Kathy cleaned the inside and outside of my sliding glass panel doors. I was more concerned about the dirty green pollen that had accumulated this spring on the outside. She also cleaned the front of my entrance door. All this to improve my feng shui. I do live feng shui as much as I can. It can't hurt, right? It just helps me focus on my intentions for my life with the universe... Tawny went home during the cleaning of the doors to take her husband his sandwich. Kathy would make a brief stop to their place to say goodbye to Jeff since he didn't make it.
My day wasn't over yet when Kathy left after 1pm. I did four loads of laundry, filled up the dishwasher, straightened the kitchen and took out trash as well as update my blog. As the afternoon wore on, my after care meds really kicked in. The mental fog began to surround my vision while my body seemed confused at the disconnect. I only have one more day to take the meds tomorrow. I dare not skimp on them just to avoid the discomfort. Sigh.
I spoke to Angie at night to let her know of my chemo day and other weekend adventures. She in turn told me of her adventures of hosting her mother/my aunt when she arrived back from her weeks long trip from the Philippines. Apparently, my aunt had an ear infection and a small cough, but they still had a great visit. I, myself, won't be able to see her until next Saturday; I need to make sure she is not coughing some crazy viral thing from the Philippines. It is a chance I can't take with my immune system.
So my lovelies...overall this was a great chemo weekend!
No, I didn't forget about my aftercare meds that make me a little loopy. I took them and still decided to roll the dice. I was determined to have a fun weekend and not to make it about being shut-in like the last time. I was feeling good and wanted to take advantage of it.
Kathy and I picked up Tawny to go for late lunch/early dinner at this place I've been wanting to try for months called Moon Under Water, a British Colonial Tavern in St. Petersburg, which was less than hour away by the beach. The chef is from England so I felt safe in getting authentic grub.
Here it is from the road:
Inside from where I sat:
My BFF Kathy always smiling!
We shared a pierogi appetizer with curry sauce. I had a delicious meaty British Pasty and Tawny had a vegetarian pasty which were accompanied by peas and rice. Kathy had a tofu curry complete with pappadom. Everything was delicious! I can't wait to go back and try their "Stella in the Dark" which is Stella Artois beer with Guinness. This will be a discussion for my doctor on my next visit. Hee.
We decided to cross the street and walked around Vinoy Park. The area has Banyan trees that root themselves in the ground in the most unusual way. Offshoots from the branches come down and dig in the ground.
I love these boats on the water:
I made another batch of cupcakes for Kathy this morning while she went to visit Tawny across the apartment complex since I missed celebrating her birthday with her. This time it was vanilla cupcakes with homemade buttercream frosting tinted her favorite green color. They were topped with sprinkles, disco dust and some candles. Tawny and I sang Happy Birthday to her.
We enjoyed a serving (or two!) of cupcakes while we watched Slumdog Millionaire I had just purchased at the store before we went home. It was a great movie! It was late so Tawny went home with some cupcakes for her husband. Kathy and I stayed up for another movie musical called Nine. The director was the same for Chicago and Memoirs of a Geisha. Guess which one out of the three is my favorite?
Kathy said that the cancer patient was wearing her out. What she didn't realize is how I feel compelled to race against the stacked effects of taking the aftercare meds. Tomorrow I will start to feel it for sure. For today, I was able to forget it and have a great time!
I looked forward to today. My BFF Kathy was visiting from Jacksonville the whole weekend. She came in last night and was ready to help me with anything we may encounter at the cancer center. I had to feed her a hearty breakfast first, of course. LOL
Kathy had her laptop case, her handbag and my chemo bag filled with bottled water, snacks for her and my notebook calendar. I carried my own handbag and the most precious cargo of all: chocolate ganache cupcakes I made from scratch the night before. Sorry I didn't take any pics. The cake itself was chocolate and frosting was made of heavy cream and semi sweet chocolate chips with some instant coffee. I made 36 cupcakes. Kathy and I split one for quality control purposes, I brought Serina four and 31 made it into a bakery style box complete with multi-color French-wire ribbon bow on top.
What I found most curious of all was that people's heads would turn as I carried this box around before I visited my doctor. Once at a cafe table in between appointments, I opened the box to check my little temptations and two people stopped next to me to peer in. Talk about being nosy. It served them right to catch a whiff of the chocolaty goodness without getting any. LOL
My appointment with my doctor went very well. Based on my blood tests and a cancer test, I seem to be healthy. I know -- I couldn't be happier!!! We're not out of the woods yet. I have to combat or minimize the side effects I am still experiencing in between treatments. The biggest one is weight gain due to the steroids as well as the leg swelling. Ugh. I just have to tough it out. The last two treatments are next month.
My doctor very much appreciated his box of goodies I gave him and would share with his staff throughout the day. I found out that he has a sweet tooth he won't admit to and he loves chocolate. He is very thin and runs twice a day -- he can afford a couple of temptations.
Another thing that struck me today was how many people remembered and greeted me from my nurse at the blood draw to the clinic workers and in the infusion center. It made me feel welcome. I even got to say hello to the chemo patients I had seen before. It was all very family like. I was proud to be able to share the whole experience with Kathy.
Serina came and took our lunch order and made sure to leave with her own loot of cuppy cakes. She visited me again later in my chemo chair after my three hour nap. I couldn't stay awake too long so I went back to sleep for a bit.
Kathy confessed to me that her throat got lumpy when she saw the nurse hooking the tubes to the other tubes sticking out of my chest from the port. I guess it made the process very real to her. I am in awe of her strength and generosity to be with me. My day at the center was great and passed without incident.
I felt hyper after the day at the cancer center so we drove miles up the interstate to a Korean restaurant for some yummy healthy food. For dessert, we went to my happy place for bubble drinks. Kathy had coconut taro flavor and I had my jack fruit with mango jelly. By the time we got to my apartment, Kathy was ready to sleep in the airbed that she had spread out the night before in the middle of my living room floor. I was in no such hurry to sleep, but I did in deference to her. The poor thing had traveled almost three hours the night before after working a full day's work.
So there you are...today was a great chemo day. I was relieved.
Progressing in your own life means hitting certain milestones. Seeing a therapist, affectionately called 'shrinky dink', today was definitely a momentous milestone in my life. It means that I am ready to face the fears I have long held and newer ones since my cancer diagnosis. It also means that I am ready to get the guidance I need for a new life...
Sitting in the lobby waiting for my appointment made me a little anxious. I looked around the waiting room and once again didn't see anyone my age. Every patient was over 60 years old. What does this mean? Am I going through something earlier instead of later in my life? I don't know. When my doctor came to collect me, I was relieved to see that I felt immediate ease with her after our introductions.
We went through a questionnaire that I had completed when I arrived. She asked me more questions that would rule out me needing serious help that required being medicated to manage and maintain some sense of equilibrium. She then began to ask me questions where I grew up to now perhaps to get a sense of a time line. For some reason in my head I wanted to scream how there were serious stories in the gaps of time I gave her.
Yes, I cried when I expressed how tired inside I felt. She told me it was okay to have a "suck" day and to not have to qualify everything like "it could be worse or other people have it worse than me". She said I needed to feel more which I told her I didn't want to because that was way too painful. It is easier for me to intellectualize things so I can maintain order. This is something we're going to work on.
After I iterated what my goals were for our meeting, she said we would tackle things in chunks and see each other every two weeks. Did I mention I brought I piece of paper listing those goals as well as outlining my pressures and concerns, etc.? It was almost having my own syllabus for a class. My OCD is part of my infinite charm. It is, I say!
My shrinky dink gave me three assignments until our next meeting. Two of them were: Spending 20 minutes every other day writing down how I feel or anything on my mind. I am not to filter anything and no grammatical corrections, etc. The other is less self-monitoring. Overall, I felt our time together was productive.
The rest of the day at work was very busy. There is a tremendous amount of pressure to perform well right now. I have to wrap things up by Thursday since I have chemo day on Friday. Even though it will be a recovery weekend, I am very much looking forward to spending time with Kathy who will be taking me to my fourth chemo day as well as keep me company during another milestone weekend.
Driving to and from work has found me listening to country music. I can't help it. Everything else new on the radio just sounds like crap right now. Country music is like coming home for me for some reason. It just feels right.
Dolly Parton is my all-time favorite country artist if you must know. While the new country ballads are great like Lady Antebellum's Need You Now, I love fun songs called Giddy On Up by Laura Bell Bundy and Blake Shelton's Hillybilly Bone. The videos are great, too...
The days are getting blurry again since work is busy. This weekend is my last free weekend before my fourth chemo. I'm walking with Kristey on Saturday morning. I hope I can last at least two miles. The rest of the weekend will be spent preparing for the next chemo.
Next Tuesday I have my first appointment with a psychologist. It will be her first appointment at 8:30am. I am very pleased that I get to have one session before my next chemo. It makes me feel in better control already. I'll let you know how it goes.
I checked my mailbox today and found a pretty present from a sweet girlie friend across the pond. I enjoyed seeing "Royal Mail" on the envelope and the postage. She sent me this trinket box topped with a jeweled dragonfly. Isn't it beautiful? I collect trinket or decorative boxes so this was perfect.
If I don't get to post during the weekend, I hope you all have some fun and please don't forget to wish your mothers a "Happy Mother's Day" on Sunday, my lovelies.
I've been thinking about this for weeks. Quickly I am realizing my life is changing again and I have to be prepared. My carefully lacquered version of reality is wearing and starting to crack from internal pressure. Before I combust and unleash steam to poor unsuspecting friends and family, I must get it together.
Today after encouragement from Bridget, I made the call to my social worker at the cancer center and told her I needed to talk to someone, a professional someone. She made me laugh at some point because she asked me if I needed psychotropic drugs. Whhhaat?! It was to determine whether I needed to see a psychiatrist or a psychologist. Good grief. All I need is to talk to someone and get advice on how to cope with now and the next chapter of my life. I don't need some gourmet drug to add to the chemicals I am already being infused with every three weeks. Face it, I've been winging things to the best of my ability. Being positive and humorous can only get me so far if I don't have the necessary tools to deal with things as a whole and in the progression of things.
The situations and themes in my head are too heavy for my friends and family. As much support and love I receive, my emotions are too much for one or two people to take in right now. It is not fair of me to unburden myself. A professional is expecting it and is getting paid to listen and to help guide the average nutter. Knowing one needs help is good, but doing something about it is better.
Some side-effects of cancer are beneficial. It is not in the physical sense, but in the emotional and spiritual sense. Cancer gives the permission to most people like myself to relax and enjoy life more without limitations. I've taken life not as seriously as I used to before January which would be a surprise to most who know me.
I used to give off the illusion of carefree. The carefree only mattered if I could control it. Does that make sense? Kind of like controlled chaos. Now my mantra comes from Richard Branson, "Screw it. Let's do it."
My week after chemo couldn't progress fast enough. The recovery is taking a day or two longer. Instead of feeling like myself early Wednesday, it is now late Thursday or early Friday. I hope this time is the exception not the norm. Blogging has taken a back burner to making sure I manage my energy at the end of the day.
My plans for this evening was to meet Dianne for Happy Hour at a trendy steakhouse across the road from my work. The place is expensive but they have made meals and drinks at the bar area affordable until 7pm. I am not big on steak so a big dinner in the main dining room would be a waste for me.
Dianne was sitting in a padded red half-moon booth when I arrived. She hadn't seen me since the week before my head shave and didn't recognize me as I came around the bar. The bar area was lit low and intimate. It wasn't until I stopped in front of her that she realized it was me! The faux hair and my dressed up slimmer body threw her off. We enjoyed two seafood appetizers, delicious gourmet hamburgers and drinks. No, I didn't have wine, but a fruity non-alcoholic drink. I was waiting for the bite of vodka or rum at the end of each sip that never came. Sigh. I envied her glasses of red wine and my hair (again!) because the waitress gushed over how much she loved it.
I was thankful for the change in pace and venue. It made me feel like a normal adult going out and enjoying life with the spectre of cancer hidden back. We laughed and talked about an upcoming trip. In July, I will tag along on her yearly trip to Captiva Island with her other set of girlfriends. I can't wait! They try to coincide it with a fishing tournament that occurs in the area around the same time which means the ratio of men to women are higher. Mind you, she and her girlies are married, but it gives them a chance to flirt and behave badly around each other before returning to their suburban lives.
Energized from my dinner with Dianne, I was about to call Tawny and Jeff to see if they wanted to go to my happy place for bubble drinks. I noticed a message of a missed call and a voicemail from Serina. She was just leaving her parent's home after having dinner out with them when I called her back. They had been concerned at how my recovery from this chemo was going and wanted to invite me to dinner. I changed my plans and invited Serina to meet me at the bubble place instead. (Sorry Tawny!) We needed to catch up on stuff since I barely saw her at my last chemo appointment.
Man, I felt like a celebrity in my happy place. Two people greeted me warmly when they noticed I was seated waiting for someone. The cafe was filled with university students and other varying adult ages. They were getting ready for open mic night. I was up for live performances.
Serina and I were enjoying our drinks when one of the guys working there grabbed my hand and asked to borrow me. Before I knew it, I had a tambourine in my hand and playing it while two other guys sang and performed Fat Bottom Girls on stage. OMG! Yes, it is captured on video and no I have not looked at my Flip camera. I was introduced as Sprinkles and got a "yay Sprinkles" later when I meandered around the cafe later.
There were two flute players that performed among the other guitarists and singers taking the stage. The first one I could tell didn't have the passion for the instrument but could play it. He didn't have the magic I was expecting. The second one blew me away. He had a samba piece from his iPod playing while he played his instrument to a world class level. The guy who grabbed my hand earlier came to me and asked if I like him. I said that the vibrato and legato was amazing. I know I never played the flute like that! He then mentioned how this kid was invited to play Carnegie Hall in New York this summer. Oh, wow! Later he played "Ain't No Sunshine" and it was the most honeyed version I have ever heard. All this enjoyment for free!
There was an amateur tarot card reader present. I decided to investigate and get a reading from her. She was okay. I let her give the reading without any confirmations. At the end of it, I explained my health and situation to make sense of whatever she had told me. I also ended up giving her tips to build her confidence and show her how to give better readings. A couple things that were on my mind were illuminated.
This old lady was outpacing 23-year old Serina. The poor thing was tired from her full-time job, studying for her graduate finals and hanging out past 10pm with me. I relented and called the evening at 10:30pm. I'll have to come to my happy place again for open mic night just to be around this kind of vibe.
I see the full moon on my head. It is not full of craters like our own Earth's satellite, but I am sure it has marks that can tell a bit of history. Its own recent history revealing what my life is going through. During an IM conversation with Angie this evening, I told her that I see my bald head, but I don't. I guess my eyes focus on my face. She mentioned something about having phantom hair of some sort.
Truth be told, I still shed a little bit of tears if I allow myself to think about my head. I think about turning 40 in January without my former glory. No, I won't know what my head will look like or how my life will be at that point. I just know I will be on the other side of this thing they call cancer. I refuse to be labeled and defined by scientific names or be bogged down with the all the appointments and hours of chemical drip for my cure. It is what it is.
When all is said and done, it will not be the full moon on my head that we will reflect upon. You will continue to see the sun shining from my smiling face and the stars twinkling in my eyes filled with love for the world. I am still me. I choose joy.
These after chemo meds are like kryptonite on your AGOL. Not only does it cause a mental fog, but as mentioned previously it makes me both hyper and tired. Too tired too really concentrate, but too hyper not to complete chores around my apartment.
On Saturday, I had two visitors. My cousin's wife Michelle visited for a spell while she waited for her daughter to attend a birthday party at a nearby museum. Tawny came by in the evening to drop off some eggs for me after her trip to the grocery store. I cannot drive for four days after my chemotherapy. Maybe the fourth day later in the afternoon if I push it.
On Sunday, I did all my laundry and some light cleaning. It sounds like a lot, but really it wasn't. My body would not allow any heavy duty stuff. I was concentrating on managing my energy for the next day.
Today, I worked from home starting at 7am and ended around 3:30pm. I survived two conference calls at 10am and 1pm. As you know my memory is affected these first days so I had to proofread and write every little thing I did which was good. It helped me to see how productive I was. Maybe I was overcompensating for being at home? I was pleased with my progress.
A nurse was supposed to come see me today. I should have canceled it on Friday while I was at the hospital after my talk with my surgeon, but I didn't. After two calls two my regular nurse to make time after my conference calls, I received a call from a different nurse at 4:30. Really?! She woke me up from a nap and told her it was okay. Upon waking further, I called her office and canceled. She called me herself to salvage the appointment. I said yes, but ended up canceling when she called me at 6:15pm to tell me she was about 20 minutes away. Good grief. I was ready for dinner, my last set of kryptonite meds and a shower to make it an early evening before watching some sitcoms. Urgh.
I called my dad and stepmother to check-in. My dad though in retirement is one of the busiest retirees I know with all the associations and church related activities he takes part of throughout Chicago. He holds high positions in a few. My stepmother is still receiving 1-minute radiation daily on her breasts for breast cancer. She has a couple more weeks to go. Luckily, she gets to avoid any chemotherapy. We both get to exchange stories on our health. It is an odd bonding which has made us the closest we have ever been since she's been married to my dad almost 20 years this year.
Tomorrow I will work from home again just to be safe. My memory will be better but it is my slight hazy vision that makes driving and seeing the road a little challenging. Sunglasses will be in order for sure until Thursday while driving. Thank God my vision for seeing my laptop is great. Don't you wish you could share such fun?
Knowing that a chemo day was not going to be easy for once didn't make me feel any better. I've known intuitively for weeks it was to be so. With the knowing, I made sure to be up early or my 5am regular time. By the time Tawny's husband Jeff came to accompany me to the cancer center, I had eaten before 6am, but I had waffles, bacon and coffee ready for him at 7:30am. Lunch would be a long way.
I drove us and checked in to have my blood drawn and as usual my port would not give up any precious drop. My right arm was stuck with a needle and another 1" Huber for my port plus a cocktail to loosen up whatever was making it not work for the draw. It would be in preparation for my infusion later. We made our way around the corner to pick up a refill for after chemo meds before walking a full length back to see my surgeon.
My appointment with my surgeon ended up an hour later. He was never that late. I surmised that later when I was told why my infusion was later, too, due to a machine being down for one of my blood tests (which had to be done manually!) that was the cause and he ended up seeing me anyway. This time he had a medical student interview me before she came to get him so she could perform a private exam in his presence. He seemed pleased of my progress and we talked about the issues with my port which he says is not uncommon and attributed my chest pain from recovering from the surgery, etc. We also discussed my wound and gave me another alternative to care for it so I could start fully exercising my lower body.
During all this time, Jeff was able to log into work in the waiting room thanks to the wifi at the center and he was able to find an outlet when his laptop battery was getting low. He didn't end up burning a vacation or sick day thanks to the access. I was happy he had something to occupy himself and a means to IM Tawny and others.
While we waited to be called for my infusion appointment on the 4th floor, I noticed a man in the midst of a complicated cross stitch work. I must admit I was sexist and thought him a gay man at first. Something compelled me to introduce myself and ask if I could snap a pic for my blog to show how others were coping with their chemotherapy and cancer in general.
Here is Dave with his amazing Victorian houses:
Dave ended up a great guy to talk to before we were called in. Jeff was in the corner logged into work and plugged into a different outlet. He was close enough to listen to the conversation.
At 55, Dave was a special case with three different types of cancers; needless to say, he was on a special team. The one cancer has him carrying an ostomy bag that with a permanent marker, he drew a smiley face and words below it that says, "Shit Happens" which caused the nurses and doctor to laugh today when they examined him. He has to go through radiation and chemotherapy, but will get to keep his full head of hair. Lucky duck!
I liked Dave. He talked about his wife and how they use to own a bed and breakfast in St. Petersburg, about an hour away. Dave got his start doing needlework 16+ years ago to pass time away on a ship that transports to the oil rigs in the Gulf of Mexico. In fact, the rig that just blew up was a sister rig to the one he went to before his health issues. He has other needlework projects waiting for him and takes pride in his progress.
We agreed on our approach to cancer -- lots of humor! He said he sat on our side of the waiting room because the other side was filled with "doe in the headlights" type of people. I decided then and there that our side was where the "cool kids were sitting". Yeah!
My little angel Serina took time out from her research schedule to come to sit a while before she took our lunch order. My lunch was a tortilla wrap filled with ham, brie, and apples while Jeff had a zesty buffalo chicken wrap. I was thankfully able to eat mine right before the Benadryl drip took me to sleep. Maybe I woke up twice? I know I woke up when my bladder decided it needed to be emptied. Jeff was not in sight. I figured he was in the waiting room logged into his laptop. When I returned, he was waiting for me. Serina came again -- it was about 4-ish and she stayed a while before she had to pick up pretty dog Belle from doggie daycare. Kimmee was out of town and she was helping care for the pooch.
My last bag of chemicals was completed around 5:45pm making my stay at the hospital almost nine hours. It was a little rough but went quick. I felt groggier and slower than the last time. Jeff was a good cookie and continued to carry my extra bag. Before we left the elevator well on the bottom floor, I could have sworn I saw a red heart sprinkle. How could it have traveled that far from the other building and still exist from mid-January was my first thought? I backtracked. Jeff did too when I told him what I thought I saw. We found nothing. Jeff said it was meant for me only. I smiled at the phantom image. Perhaps a soul letting me know something -- giving me a soul kiss to cheer me?
I asked Jeff to make one stop at a fast food place so I could get a salad for dinner. There was no point in me trying to make dinner for myself as tired as I was this time. Jeff had dinner waiting for him at home with his family. I was grateful he lasted all day. Three more chemotherapy cocktails or "happy hours" to go, my lovelies...
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.
