Remission

THIS IS THE LETTER MY DOCTOR WILL BE RECEIVING NEXT WEEK ALONG WITH A CARD.

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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!
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Yes, my lovelies -- I am in remission. Thank you for support and prayers. Every little bit helped me heal. xxoo

Remission

Love Infusion No. 3

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...

Love,
Sarah Sprinkles xxoo

Love Infusion No. 3

How I Roll

Chalene Johnson is an inspirational fitness instructor. I first heard about her through Beach Body where her video set called "Turbo Jam" is sold. I've owned a set her videos for more than a year. It is the most fun you can have exercising at 5am; however, due to the progression of my dis-ease, I was forced to abandon my exercise routine months ago.

One of her blog videos summed up how I am dealing with my dis-ease. She talked about the difference between merely surviving and conquering situations in your life. Basically anyone who is still alive after traumatic situations survives it and is a survivor. Those who take charge and own the situation conquer and become conquerors. This label being special and unique as it denotes owning the situation rather than merely enduring.

This brings me to the last couple of days. My last post was about my new haircut which I love more each day. Yesterday was my rescheduled doctor visit -- it was supposed to be tomorrow but my doctor had other plans. Tawny was unable to take me because she had an interview in the morning. Luckily for Sprinkles, Tawny's husband Jeff volunteered to drive me as he had already taken the day off for other things.

My doctor took off the rest of the tape strips across my stitches and decided to leave on my wound vac dressing. He could see that I was progressing nicely and in great spirits. His next words brought me back a little. Chemotherapy was on his mind -- more importantly, me being part of a clinical drug trial. I was thrilled to be able to help or so I thought.

Minutes later I was being briefed by a nurse about the clinical trial. It would involve including an additive to the chemo mix I would be infused with during the next several months; otherwise, it could be a placebo because of the blind testing they were conducting. The more she talked, the more I was slightly dismayed and quite horrified at the side effects not to mention the extra CT scans, etc. She piled on a bunch of brochures and pamphlets for me to read and to assist me in making a decision very soon.

Jeff drove us to get a late breakfast before he took me home. I discussed the doctor's visit. We are of the same mind of helping science progress; however, I was just not fully on board inside. It was my uncle who helped me feel better about the decision not to participate. He reminded me that I am a single person with a single income living by myself and that I have a responsibility not only to myself but to work (for income). It would be different if someone would be there in the middle of the evening next to me to help me should I have adverse reactions. His words resonated and my inner voice reminded me that I have already donated my tumor to them for research so it wasn't a complete "no" to the progression of science. Tomorrow I get to tell them...

Today I visited my workplace to speak with HR and to tell my boss about my tentative date to get back to work on March 15th. My surgeon wants me to have one interval of chemotherapy before I go back to work to see how I react to the chemicals. I won't lie -- I was a bit depressed to wait longer to resume my job. He also told me that I would lose my hair pretty quickly. Nice. In an odd note, I will get a prescription for a wig to be paid by my insurance. I would like it soon so I can have it styled to what I have now. I will temporarily assume the persona of Telly Savalas. As soon as chemo is done, I will grow my hair again and wait to get extensions when they are long enough to hold them. Yes, Shallowville never ever sleeps in Sprinklesville! Hee.

Back to the work visit...Everyone seemed stunned to see the new Sarah. I've lost 38 pounds now since the surgery a month ago which obviously makes a big difference in how I look. The new haircut didn't help them either. Ha!

It is my responsibility to set the tone when meeting people after my surgery and my tone is almost always effervescent. This made today's visit fun. There were a couple of people treating me with a "pity approach" in their way of trying to be sensitive. How I detest this!!! It just drives me crazy with annoyance. Pity is not me. To iterate, we are approaching this dis-ease with a project plan (July completion date) and with humor. If you are not on board with that, then I cannot associate with you. I will be goddamned if I spend the next several months mewling and walking around half dead in spirit and in body. I am set to conquer this and not merely survive. Dis-ease is not a reason to give up, look ugly and lose your humor. I am making every effort for health and beauty. We all respond to positivity. That is HOW I ROLL.

Love and Health,
Sprinkles xxoo

PS I am going back to my apartment either Monday night or sometime Tuesday barring unforeseeable circumstances. I have a "honey do" list that my girlies will be helping me complete as I progress in the best of health.
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How I Roll

Happy Thanksgiving

This week was my vacation week. It started off with a weekend trip to Jacksonville to visit Kathy with Tawny. Kathy surprised us with movie tickets to see New Moon which we all enjoyed immensely. Tawny and I have read all four books of the Twilight series while Kathy seems to have been motivated to read two more.

I was pretty much a slug on Monday while Tuesday was spent at a recommended follow-up check-up with my physician. The bloodwork taken at my cookie doctor last month revealed that I was anemic and unusually low on Vitamin D. It is official -- I am a vampire! My physician surprisingly wrote me a script for the vitamin deficiency.

The doctor also prescribed a mammogram since it has been years since I've had one. At (almost) 39 and with history of cancer in my family, I've had to endure the breast pancake machine earlier than normal. Coincidentally Tawny had to get one, too, with the same radiology company. A couple of phone calls secured us back-to-back appointments yesterday. We took the term Bosom Buddies to a whole new level!

Today is Thanksgiving Day...Turkey, gravy and rice -- could anything be more divine? My aunt made a legendary feast as she always does. This time I took home some leftovers to enjoy later.

I brought my aunt a big jar sampling of my Atchara (Filipino pickled papaya). Pic #1 is of the raw ingredients. The only things missing are the garlic and the sugar. Pic #2 is the finished product.




Yes, the decorative carrots are a rule. I didn't make the rule; I just followed it for fear of bringing a strange yet believable Filipino curse on me.




For part of dessert I made Cake Ball Truffles. It is made by blending spice cake (usually red velvet cake) and cream cheese frosting before rolling into balls. [Clearly not my original idea!] They were chilled and then dipped in chocolate coating. These crazy treats were a hit at my aunt's feast as well as Tawny's home. I stopped on the way to my aunt's to drop off a couple of containers.




Tomorrow is Black Friday. I have no desire to be in any retail store at any hour just to avoid the greedy crowds altogether. Some stores are opening at midnight tonight and others around 3am, 4am, etc. just to capture more sales with lures of unheard of deals. Big deal. Well then...Off to get some green tea.


PS I am thankful for my family and friends who continually support, encourage and love me. I am also very thankful that I don't have to go in the sun to increase my levels of Vitamin D. Taking a pill is worth every wrinkle not earned. Hee.
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Happy Thanksgiving

Update....Urgent Care Visit

The familiar ache woke me up every two hours before I succumbed to getting the day started by walking my doggie. IM'ed with Tawny giving her update while she was at work. I could hear my phone ring after my shower. It was Tawny's husband Jeff calling to find out how I was doing and to inform me that he was picking me up in 15 minutes. I told him I would drive myself; he iterated that he would pick me up.

This experience with Jeff was a more somber one whereas Tawny kept making me laugh last night. Pain shot through my abdomen. She would stop and the next thing would be funnier than the other. My eyes welled up...

My experience at the Urgent Care Clinic was much more pleasant and calming than the E/R hours before. The doctor was guessing based on my symptoms. He barely looked at me under my clothes. I was dressed very un-AGOLlike as captured in the pic below looking at those old ugly baggy pants covering my shoes while I sat on the exam table. (I am teasing, but I did wear sexy undies for the man. Being an AGOL is a 24/7 job.) He said that if symptoms persist, I am to go directly to an emergency room. Two prescriptions later for two different symptoms, Jeff took me home so I could get it filled.

I don't want to describe further the nature of my maladies. Suffice it to say that for now, I will be okay. I share a lot, but this one I would like to keep.

Decided to get the scripts filled at Costco near my aunt's so I could visit her and give her an update at the same time. Called my boss to give updates. Later Angie called me from work and got the updated info. Rob (the Terrier) grilled me on my symptoms and prescriptions even sending me links on IM to get me to understand where the doctor may be going with his selection of meds and extracted a promise to see an internist as soon as possible. We have Open Enrollment for benefits again this week so hopefully, their new list of internists is more promising than last year. I'd better find someone or several peeps will hound me to the ends of the earth.

My exam room and my prescriptions with warning labels. Which is worse - the symptoms or the side effects? Yes, I agree. It is a toss-up.


The rest of my day is gone...evening now. Wrapping this up to get myself some rest and more meds. A very big THANK YOU to Tawny & Jeff for shuffling this achy AGOL around and a thanks to all who called, IM'ed, texted and e-mailed me with their concerns and well wishes. I cherish you all!!
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Update....Urgent Care Visit

Can No Longer Be Ignored

What I haven't reported is that I have been suffering from abdominal pain the past four of days, Friday being the worst day. You know how my Friday went, too. Driving my car over the speed bumps in the garage brought sharp pains that morning. I had agreed with a couple of my girlfriends that I would go to the doctor if it persisted. As a rule, I despise going to the doctor. The environment just has bad memories for me and I don't like the vibes in the hospitals or doctor's offices. I have a great health insurance plan which I pay every pay period, but I barely use it unless I have to. Luckily, I am also rarely sick or so I thought.

In the middle of taking notes down from Google map for the Super Bowl party I was invited to tonight, I experienced sharper pains than I had from Friday that took my breath away. I guess that was a sign to call Tawny's husband (his cell is louder) and let him know that I wouldn't be making it after all. This pissed me off so badly - I looked in the mirror and saw someone who was dressed and ready to go with her brows furrowed. Tawny texted me, but before I could reply back, she called me. Jeff was already taking the day off tomorrow and he could take me to Urgent Care (takes our insurance!) if I wanted to wait until then or they could take me sooner. I opted to wait until tomorrow.

Found myself driving to the closest Asian store to get some comfort food. On the way, I tried to call Angie in LA but she wasn't at home and her cell went straight to voicemail. So much for stalling. I took a deep breath and dialed my aunt's house and told her the events in the last several days. She was very concerned, offered help and would call me tomorrow regardless if I call back to check on me. It is rare I am sick so this is a bit worrisome.

This is bad to say that if Tawny hadn't pushed it, I would probably delay my doctor visit more. I am more afraid of her resorting to dialing 911 for the ambulance to come than facing the pain. How strange is that? She cares very much that great friend of mine. Let's cross our fingers and see what the doctor says.


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Side note: Two of my buddies on facebook suggested I get a new vehicle as a response on Friday's status report. I saw this and bookmarked it just in case.
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Can No Longer Be Ignored