Staple Pulling Contest

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!

Hugs,
Sprinkles
x0

Staple Pulling Contest

Love Infusion No. 2

Are four alarms enough to make sure your AGOL wakes up in time for her second chemo infusion? Okay, it was a bit overkill, but I didn't make it into bed until 1:30am. In case you needed to know, two alarms were sufficient to get up at 6/6:10am. One to open my eyes and the other to remind me I had to get out of bed and make it up again so the superfluous decorator pillows were displayed nicely over the comforter.

I woke up my aunt at 7am so she could complete her morning regimen. While she did that I prepared her cereal in the bowl, a banana for her to add on the side and some sexy coffee I made. I introduced her to a new brand of almond milk I have fallen in love with for her cereal. Breakfast was eaten and a last minute check-up performed in our bags for snacks and paperwork for the entire day at the cancer center.

Check-in was great. Found out I didn't have to include a co-pay of $30 as my visit was considered a follow-up to my port install surgery. My surgeon was surprised to see me NOT undressed and ordered me to quickly undress for my "cookie" exam. (There is so much I want to interject here -- just snicker with me instead.) When he re-entered the exam room, I was giggling behind the curtain and my aunt on the other side was giggling, too.

My wound no longer needs any covering and I can safely exercise even a bit more strenuously if I want. He said I looked good. Of course, my rock star surgeon -- glamor make-up, sassy wig and scintillating smile makes Sprinkles easier to gaze at. LOL Before I long I had a metal speculum inserted and then his own surgeon's human (ahem) digits. You know. No pain or anything. He was very pleased. He left and came back with a prescription for my return to work on Monday and a reminder that every exam from now on will require a vaginal exam. Well, now. Just of the girls: Isn't like a man to rush you to undress, feel you up all kinds of manner and still leave you unsatisfied? AND I am paying for the privilege. Hee.

My surgeon's nurse met me outside to give me papers for my next appointment. I showed her my chemo candy bracelet on my wrist that says "chemo sexy". She laughed and wanted to show my surgeon. I gave her one to give him which said the same thing and she mentioned that I could sell them downstairs at the gift shop. Maybe later when I can get a schedule together and my online shop is up and running, I can expand. Wild, huh?

I scurried with my aunt to the pharmacy to get my after chemo meds. Instead of paying $20 like last time, my refill together was under $8. We then made it to the fourth floor for my blood draw where I was informed that my appointment was supposed to be downstairs at 7:15am. What?! All of the paper work I have and the automated call confirmed for 9:30am blood draw. Someone had changed the schedule two days ago and never called me. I told the nice lady that I was not dragging my aunt again downstairs after taking her to the other building for the meds. I also informed her I was not happy and for her to figure it out. My scheduling times were meticulously recorded in two places for me not to forget because of my chemo brain which makes my memory a little crazy. A supervisor quickly got me in and then took care of other things for my next appointment.

So......my port was a bit temperamental. I required a 1" Huber needle (read as big ass needle) instead of a 3/4" needle for my port. The nurse had the worst time trying to get blood and had to stick me in the arm with a regular needle for the first draw. I teased her that maybe I received the "dumb ass port" instead of the "smart port". She had me pumping my left arm, coughing, breathing heavily and I even jumped up and down when she had me stand up. We resorted to a plaque clearing solution that had to be administered by a higher ranking nurse so that my port would be ready for my infusion.

While my aunt and I were in the waiting area, I found out that I needed more blood draws for kidney and liver function which were probably ordered by my surgeon thus resulting in my infusion being an hour later. The delay was okay because Serina was coming to get our orders for lunch and we could eat leisurely.

Regarding my Chemo Candy bracelets, I gave one out to a lady in the clinic area. She was very surprised and bemused, but I knew in my heart she needed one. I later felt her gaze upstairs in the infusion center waiting room. I gave out more bracelets in the infusion center to more receptive individuals who smiled and wore them immediately. One elderly lady received hers on her first day of chemo. She was thankful as was her family. I gave one to my needle a nurse and two more to a man and a lady who took their places next to me in the afternoon. Their infusion was only for an hour each, mine was 4.5 hours this time. Serina took one for someone in her office when she came later to check on me. I had two left for the guys. It would seem that the ratio of women to men getting chemo was much higher.

My aunt drove us home and I made us more sexy coffee. We chatted while I cooked some jasmine rice to her liking. She likes the rice drier than sticky like Angie and me. My leftover noodle dish was reheated as a main dish with rice, hot sauce and ponzu sauce. We ate like Filipino princesses!

Tawny came later to visit us and I served us some caramel praline ice cream with chocolate peanut cookie sticks on the side. We dissected the day and laughed like girlies. Tawny eventually left since she had a very early start to her day. My aunt and I chatted the evening away until the day finally caught up on us. We found it hard to keep our lids open.

Love,
Sarah xo

Love Infusion No. 2

More Than One Vacuum

My surgery was about three weeks ago. It feels like four. My weekend visitors especially Kathy today had to remind me of how far I have come since that day and the week before the surgery when I could barely breathe...

The past two weeks has me at my aunts where I am being taking care of with kid gloves and being fed mostly Filipino food, a fact that brings me endless smiles. It sounds great, but it is not all great when you're used to having your own independence to do whatever you normally do. I am not allowed to drive so Tawny gets to drive my car when she's not hustling me to and from the hospital for appointments.

Last Sunday night, I developed a fever which was a response to an infection I had developed in my lower set of stitches. I had no choice but to call the hospital around midnight. The on-call gyno doctor was a bitch and disrespectful. I did take her advice, but did not call her back. Instead I waited until normal hospital hours and called to explain what happened including dealing with bitchy gyno. I was scheduled for blood work and an afternoon appointment the same day. My normal stellar care resumed itself and apologies for bitchy on-call doc were issued several times.

A nurse practitioner who worked under my surgeon saw to me and decided to take out my stitches. The first five-inch row were pinchy while the rest of the six inches were extremely painful that I carried on loudly while trying valiantly not to use the curse words that were fighting to be screamed. Tawny let me crush her fingers as I cried and tried to focus on her and her voice to lessen the pain. I wasn't armed with pain meds since I received a scolding from the on-call gyno for taking them round the clock instead of as needed. My nurse was not happy. She almost admitted me but there were no beds available. I did not feel bad enough to be admitted. New antibiotics were prescribed before we left.

Irma, a social worker, came to see me in the exam room to arrange for a home health nurse to visit my aunt's home three times a week to change the bandages/sponges for my new wound vac. It's like a Hoover for your wound. Because of the infection, my wound had not all sealed so it was gaping when it was not stuffed with gauze, etc. Different sponges are inserted in the wound site, followed by double-sided sticky cling film layered around the perimeter (simulating skin) and on top of the wound. A slit is cut to put a round plastic attached to a hose that would go over my wound followed by more sticky cling film. Another hose connected to a canister and battery pack is attached to the hose on my body. I carry this everywhere I go and make sure it is charged. Once it is switched on, it begins to suck the sponges sticking out back towards inside my wound where it will wick any drainage to the canister. Taking the dressing off and putting back on is a bit painful. All this trouble is supposed to heal my wound 50% faster. It is worth it in the end.

Tawny took me back for a follow up two days later - last Wednesday - to see my surgeon who pronounced my wound healing nicely. Our hospital visit was 1000% better than the two days prior. I sang in the exam room while waiting to see him. I won't see him again until February 12th. I was also switched from Percoset to oxycodone, a gentler but stronger pain medication not containing acetaminophen to injure my liver. The thing about these narcotics is that it is imperative to take stool softeners and with my wound near that area still healing, I have no choice. I know -- not glamorous at all! Sprinklesville is not as effervescent and scintillating these days I'm afraid.

Remember when I told you about my swollen ankles? They are no longer swollen -- they are half the size. They are rather sexy and shapely, I might say. I've lost 35 pounds since the surgery. The alien was large and I was carrying around that much extra liquid bloating. Of course, my appetite isn't grand, so that contributes, too. I halfway do not recognize the woman I see in the mirror. As the days pass, I am having to come to grips with the new life I will have especially after chemo treatment which I hope to have completed by June/July. My surgeon is not discussing this until my wound heals to his satisfaction. Just as well. The days are appearing seamless but I try not to get sucked in that kind of vacuum. I try to recognize each day for its own. Meanwhile, I am resting and receiving visitors.

Kisses,
Sarah xo
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More Than One Vacuum

Lucid Moment

Finding a lucid moment when not doped on narcotics for pain management has been challenging, but I am going to take advantage of one moment now to update my blog. Where were we...?

The day of my surgery was a blur. My aunt and uncle came to my apartment to pick up my bigger suitcase while Tawny picked up and small suitcase for the hospital. Tawny drove the two of us to the hospital with my aunt and uncle following. It was a bit tense in pre-op where I was prepared for surgery. Having my aunt and uncle there by my hospital bed got a bit emotional. Soon the anaesthetic drugs tookover and I just remember bits and pieces.

In the recovery room, I remember blinding pain and being so chilled my teeth chattered. I also remember asking what time it was so I could ascertain if my ovarian cyst was benign or cancerous. The nurse told me it was 4:15pm; I was in the operating room around 11am. That told me that it was not good.

Eventually I was wheeled to my own private room. On the way to the room, the ceiling lights passed too fast making me nauseous that I immediately closed my eyes. I heard familiar voices in my room where my aunt, uncle and Tawny had been waiting with smiles and kisses.

Tawny stayed the night to keep vigil over me, making sure she was a whisper away. I kept moaning all night and kept apologizing to her. She fed me glasses of ice chips to hydrate my mouth and throat. I couldn't believe how dry the medications made my mouth feel. That night was the first of six nights Tawny stayed overnight with me.

I was told by Tawny and the doctors that I had Stage III cancer. My surgery involved a complete hysterectomy, all my fallopian tubes taken, a portion of my belly taken and a portion of my intestines taken as well. The intestines are now re-attached via titanium staples for my flesh to grow over. It will be a permanent installation. A long row of staples up and down my abdomen gave proof to the severity of the surgery.

During my stay at Moffitt, I was woken up by nurses, patient care techs and doctors all hours of the day and night. Being hooked up to IV for nourishment and pain medication was surreal. Did I mention the catheter I had to carry around? Everywhere I went for the first four days involved juggling these things.

I ate ice chips for the first four days then eventually being allowed gelatin. When the hospital food came, I really didn't have an appetite for it but I tried to eat as much as I could. My appetite didn't return until I came home to my aunt's house where she fed me food to my taste.

The most incredible part of all were the texts, facebook messages, cell phone calls, room phone calls and the alarming amount of visitors I had during my hospital stay. There was an incident with my cell phone midstay so I may I have missed some calls. There were flowers everywhere. The medical staff had to bustle their way in through everything. It was quite funny. I think they were surprised themselves at how many visitors they saw in my room. They did accept Tawny has my nighttime angel. She went home during the day for showers and some rest. I know her husband missed her much during that time.

I was eventually discharged on Monday the 18th. I'll write more about everything since then later. My laptop battery is signaling 13 more minutes of typing time. Thank you very much for keeping up with me and also for the lovely blog messages you've left me. All in all I am very blessed. Until my next lucid moment....

Love,
Sarah xxoo
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Lucid Moment

Ecclesiastes 3

My time for open surgery has been scheduled on Tuesday the 12th at 1:15pm. It is two days before my birthday and I cannot think of a better present to myself than the gift of health!

Wednesday found me shuffling between floors at Moffitt Cancer Center. I spoke to several individuals and was physically examined by two doctors that day. My wonderful friend Tawny accompanied me the whole time. The late afternoon had me participating in pre-operative tests and extensive instructions so I would be prepared for Tuesday. Our visit lasted a total of over five hours. We were hungry and exhausted. Before too many phone calls were made to family and friends, Tawny and I finally ate at our favorite Mexican place.

So a bit about the surgery...I am instructed to check in three hours before surgery having already bathed in antibacterial soap. No make-up, perfume, nail polish and lotion are to be applied before surgery. Eek! Anyhoo... The surgery itself should last about an hour if the sample of the cyst taken to pathology is found to be non-cancerous and requires three days hospital stay. If it is cancerous, surgery could be up to two and half hours because of further removal of reproductive organs and tissue with four or five days hospital stay. Either way still requires six weeks recovery time at home.

Thursday and Friday made for busy days between sorting out work stuff and hospital stuff during work hours. There is much to do before surgery day. My human resource department have been extra helpful in making sure my pay during this time is properly coded so not only do I get the benefits of Short-Term Disability (60% of regular pay) supplemented with my loads of sick days I've hardly taken over the years. This should assure me a full paycheck during my leave of absence and still be able to accrue more vacation time while in recovery. Few employees have this luxury and peace of mind.

This weekend I will run last minute errands, start to pack two suitcases (one for my aunt's house and one for the hospital), tidy my apartment a bit and also visit my aunt and uncle to go over the plan for Tuesday. I will still go to work on Monday instead of being at home spending too much time thinking about the following day.

The support of family and friends I have is immense and my care at Moffitt is top notch. My blessings are still being counted... Thank you to everyone!

Love and Kisses,
Sarah

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Ecclesiastes 3

¹To every thing there is a season, and a time to every purpose under the heaven:

²A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;

³A time to kill, and a time to heal; a time to break down, and a time to build up;

⁴A time to weep, and a time to laugh; a time to mourn, and a time to dance;

⁵A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

⁶A time to get, and a time to lose; a time to keep, and a time to cast away;

⁷A time to rend, and a time to sew; a time to keep silence, and a time to speak;

⁸A time to love, and a time to hate; a time of war, and a time of peace.

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Ecclesiastes 3

Sick Humor

No countdown on the New Year -- we were too busy watching the latest Star Trek movie on cable. There was no fanfare, but there was comfort in being surrounded by friends who have known me a long time. That's way better!

Two days later Tawny came by to help me get some affairs in order. Too bad it wasn't the fun kind. I had received a welcome packet in the mail from Moffitt Cancer Center which included a full color brochure/booklet that was both friendly and informative plus a nice stack of paperwork I had to fill out. The first page outlined what I was to bring to my first appointment; however, the sobering portion of the page was the top right where a medical number was assigned to me. I know this is just part of procedure and is not a knell of anything in particular to come. Still. It is sobering.

I suggested Tawny to drive us to my aunt and uncle's in my car since I was uncomfortable, just not feeling up to par. The funny part was that we had to switch so I could drive after all. My ass grooves were molded to the drivers seat and made the ride more comfortable. The passenger seat made me favor the side that was sore. Maybe it is just psychosomatic and my need to be in control?

The visit to my aunt's was to get signatures and witnessing my wishes in a living will on what I want in case I end up in an vegetative state, etc. and to make my designation for a health care surrogate to make decisions for me in case I am incapacitated. I told my aunt and uncle as I filled out my portion that if a sexy man was on top of me incapacitating me at the hospital, they were to leave me alone. How else should one go in the next world? We all had a great chuckle.

Another errand and a lunch on the go, brought Tawny and me back to my apartment to help me with other paperwork and other little things I needed help doing. It is difficult to ask for help, but I know that I need to right now if I am going to be well until my next medical appointment. It will determine my day for open surgery to get this alien amoeba out of me. I eat less because it is pressing up against my organs yet as I lose weight it continues to re-assign itself around my midsection announcing itself in front of me like a shameless and knowing showman.

Don't fear my lovelies, if the phone conversation with my new doctor's nurse assistant today is anything to go by, I should have more laughs going through this journey. Apparently, I am not so special. There are others with bigger cysts that they've seen. She punctuated the news by iterating (in my words now...) what a rock star my doctor is and how well he is rated as a surgeon in his field. Just lovely. I'm going to need a really good poke.
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Sick Humor

Spaces in Between

RECENT NOTE TO MY GLAMOROUS FRIEND JILL:

So my dear...I wanted badly to see you over Christmas for lunch or something but I've been dealing with matters that are taking precedence, namely my health.

The protusion in my stomach is not just fat, but an ovarian cyst about 25 cm/10in. in size. I look 9 months preggo right now and my legs are swollen to capacity thanks to less circulation. How did I find out?

I was checking out *** and had a consult with a surgeon because of my burgeoning tummy. I was eating less but it was getting bigger so I thought I was just out of control somehow. I told him my stomach was distended more than it should be and was firm. He examined me and agreed and immediately ordered a CT scan and that's when he told me at our follow-up that it could be cancer and he made arrangements for an urgent appt with my gyno.

Met with gyno two days ago who has since scheduled me for a meeting with a gynecological oncologist at Moffitt for next Wednesday. The results for the blood drawn on Monday will be ready for that appt. We still don't know for sure but what I do know is that the size explains all the weird things happening to me and will be relieved once extracted through open surgery. I will be recovering at my aunt's in Brandon after.

To me, this is just another piece of news. I told my family we are approaching this with a project plan and with humor. Anything less is not acceptable. I have already lived through worse so this is nothing. Also, to put things in perspective, I am not a child burn victim or a dad who just lost his job and home while trying to figure out how to feed his wife and kids nor am I a mom with cancer figuring out how to take care of her kids.

The bad news is having to wear elastic waistband jeans. EWWW
The good news to me is that I finally have some answers and I am gonna lose some weight!

Just letting you know..

Hugs,
S

JILL'S RESPONSE:

I would start out with the OMG's and WTF's but we dont' have time for that....

I am here for you. I will call you after my lunch appointment so we can plan out the "divicious" plan of attack-that word is (Div ISH IS).

First and formost...fashion...what makeup will you wear in surgery....what lounguing outfits should we buy? Oh the details. I am not making light of this AT ALL...but we must handle this with our everlasting positive attitude and sense of humor, there is no other way to get through this. I love you very much my friend and I will call you in a few hours. Everything will be OK.

SPRINKLES RESPONSE:

You are my honey! I was thinking the same thing. Need to find some hot pink socks and I need to figure out my air fresheners for my room because I am not smelling hospital smells. Ick. xo

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This is the kind of friendship(s) I have in my life... Tawny has been with me at every appointment if she is able, being patient and supportive. My cousin Angie just bought me pink comfy and sensible slippers for the hospital (as opposed to the ones with maribou feathers I secretly like) -- as well as lots of other incredibly nice things she does everyday for me especially during her Christmas visit! My galpals at work have helped me re-tie my shoes and re-adjust my chairs for comfort. Kathy listens and offers words of encouragement that I've normally given her in the past. Kristey and Myrna are there, too, just waiting for me to say the word 'help'. I can't even begin to tell you about my family...

I just love everyone so much and want it all to be better. It is the spaces in between these appointments that try my patience and my independence. At least I have Las Vegas neon pink socks and vanilla air fresheners to look forward to when this alien juice is out of me. ;p

Joy and Magic to all of us in the New Year!

Love,
Sprinkles xxxoo
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Spaces in Between