This is the last of the double dose of death. I am so ready for this to be done. I feel so tired and weak. I endure the normal three hours of infusion. I just want it to be over with. It can be so depressing being there while others are getting their infusions. Other patients are in other stages. Some are just starting while others are celebrating their end of this part of the journey. I feel so stuck between a relationship that I want out of and nowhere to go. I feel stuck with the hatred that mother is feeling towards me and this relationship. That has not made things any easier. It is so depressing to be stuck. It is enough to have endured the crash and all the ups and downs of that process. But cancer, man, that is a lifetime journey whirlwind full of emotions, regrets, depression, self-reflection, heightened awareness of your own body and mind; packed into a mass of procedures and appointments. It is an effort just to get out of bed and do anything at all. The infusion time is when my mind just becomes chaos of thoughts and fears and anxiousness where I just to run screaming down the hallway away from myself. Back then, I just always over-analyzed and worried about stuff that I really had not control over. Things like this have changed my perspective on life and what really is important. Because of all my experiences as a whole, I have made changes which has made others question me or look down upon me; but at the end of the day, what makes me happy and healthy is uttermost important. Many people never realize that and chase after others as if they are leaders and they will always be just followers. This last round took the most out of me and left me pretty much exhausted. When I went back the following week for white blood cell booster shot, I was scheduled for the new chemotherapy. This would be a different type and would place me chemically into menopause thus killing off the estrogen in my body. I had two types of cancer in my right breast. One cancer was estrogen related and thus this chemotherapy would lock off my estrogen cells from being turned into cancerous cells. The new chemotherapy would be a weekly infusion treatment along with steroids and Benadryl because it was plant based. There were still possibly of side effects but those would be different than the double doses of death. I was advised that with this type of chemotherapy that I possibly could return to work part time as I would not be in as much danger. I had mixed feelings about that because I know there would be tons of work to do and catch up on. Plus, I would have to undo any mistakes that my co-worker did. But since the relationship was not going that great, would get me away from that situation at least for a few hours a few days a week. I was still on a leave of absence through till the end of May.
Well here we head on full blast into another decade. Most thought we would be over in 2000 by certain end of day’s theories. But, tomorrow it will be 2020. I am going to take the time today, the last day of 2019, to reflect on my decade. A lot has happened through this decade. One would think the 2000s would have done me in with my crash and career ending injuries. However, that all prepared me for the 2010s. I had no idea what was in store for me. I am still standing. I preserved as always.
Looking back at 2010 that seemed to be a year of unraveling, my relationship was beginning to be in the toilet. My fears of a repeat of what happened the first time around came to fruition. I should have gone with my gut feeling when she had come snooping back around in 2007 getting her claws into me at my lowest time. Hey the saying went, “If love comes back to you then it is yours forever”. I call bullshit. It isn’t love when both sides aren’t winning and everyone is losing. Relationships take compromise, but it seems that someone always bends more than the other. I was beginning to be loose myself and having to bend past a breaking point. The pending nightmare happened and the cycle of my ex leaving me for the same person happened again. It didn’t last for long and my ex got a taste of her own medicine. As quickly as her true love as she called it whisked back in, that person fled. I should have let sleeping dogs lie on that one. But I thought I will give this one last chance. Stupid me and I paid the price for it. It was breaking me more and more. I just had just reconciled with my parents after a falling out due to this person. I did have a blessing in finding Batman.
Going into 2011, the pressure and stress kept boiling. My co-worker went out sick in December of 2010 and wouldn’t return until July of 2011. I was left to do everything. Stress mounted as high as demands on me to keep performing. The more I got done without any help, the more that was expected of me. Nothing was ever good enough. That spilled through into my relationship with my parents and that with my ex. A Trooper, whom was like my brother, had a crash in October and was never the same. He suffered from possibly a stroke or brain aneurism. I started not feeling well towards the end of the year. I went to the gynecologist. A lump was found in my right breast. Trooper Dyer passed away on December 28th. This was a loss that cut into my soul. Yes I had lost three of my four grandparents but their loss wasn’t as great as losing him. I wasn’t really close to my grandparents for various complicated reasons. My lump in my breast had been a catalyst to spark something in my relationship with my ex. I think the possibility of my having cancer and seeing me break with the loss of Bill showed her something about me.
No partying or celebrating for me on New Year’s Eve. On the first day of 2012, I was heading to a funeral. We celebrated Trooper Dyer’s life. Later that month came mammogram, ultrasound, biopsy and the eventual diagnosis of breast cancer. That term will cut through your soul like a knife through fresh baked bread. Telling my mother that I had cancer was the hardest thing I ever had to do. It broke her. She still hadn’t gotten over my crash. I faced more surgeries, chemotherapy and radiation. That year took a toll on my soul and health. My relationship ended the further into the treatment I went. The cycle came around again. That her and her so called true love found each other again. My ex had and probably still has no clue whom she is as a person. She looked to me and her so called true love as a guide to whom to be. Both versions of her herself were different.
Beginning 2013, I started to work hard at getting better and to eat healthier. I at times reflected back on I should have just said no and not had all that stress with my ex. However, the good times and experiences prepared me to be the strong, independent woman I am today. I focused on myself and doing what made me happy. Going thru both the crash and cancer, I knew I needed to focus on me. I started saying no to invites if I really didn’t want to do something. I learned more about myself and my personality. I became enlightened. I didn’t let the so called what was popular at the time or what society expected of me to control my actions. I stepped outside of that and focused on the real truth.
2014 began sad and depressing for me; Boo had become sicker and sicker. I ended up making the hardest decision to let her go peacefully and not to suffer anymore. She had cancer of the mouth. My Mom was present with me as I said my goodbye to my sweet darling. I held her as she passed. I buried my face into minky fur and said my goodbyes. I went home and my sweet boy greeted me. He didn’t understand that his sister didn’t come back home with me. He and I bonded even more as we both grieved our great loss. I joined Twitter and started meeting some great people. The further that him and I ventured into the social media life, the more I knew I had found my place. I no longer felt alone. I found others like me that didn’t want children. I found others that loved their furbabies as much as I do.
2015, Batman joined #ZSHQ, which is a Twitter club made up of all types of animals and stuffies that protect the world from zombies. Batman’s social media fandom grew. Every year since, he has received gifts and cards from all over the world for his birthday and for Christmas. Batman rose thru the ranks and now holds the rank of Commodore. I am now part of the HQ admin team as well the costume closet team. We are a close knit bunch. Thru these past few years, the Twitter family groups have grown. I have met a few of them in person. My close friendships thru social media have been some of the most rewarding friendships that I ever had in my 49 years on this earth. We have suffered losses together. We have supported each other thru hardships. We celebrate each other’s successes.
This past year, my parent’s took me to Epcot for my 49th birthday. We had a blast. They really enjoyed it as much as I did. I turned 18 at Walt Disney World. I will turn 50 at Walt Disney World in 2020. I deal with my health limits daily. I continue to push through the pain and muddle through. I am nowhere near where I want to be according to the scale. But I continue to eat healthier and do what makes me happy. I learn from my mistakes. I continue to try to be a role model. I have seen ups and downs over the past five years. But shedding the toxicity for me in the past decade has done wonders. My wish for the next decade is that others break free from the agenda of the current state of the world and find a way to be more humane. I will continue my efforts to be a voice for the voiceless, the animals of the world.
I am halfway through the double doses of chemotherapy. I am halfway through the shadow of hell. I can see the light rising from the mountain ahead but still have a lot of climbing to do. I must muster strength to carry on as the date arrives for my third round. My 42nd birthday is around the bend. The timing hopefully will work out that I will be on the upswing for my birthday. I really could use a little celebration. My relationship with my partner is pretty much a downer. I am not sure that there will be any kind of celebration so I do make back up plans with Amy in case that I am pushed aside for something more important in her eyes. Being stuck in this situation really sucks.
I am hoping that since my menstrual cycle was during round two that hopefully this round won’t be as bad. I endure the usual almost three hour routine. I deal with the three days of migraines and pain by remaining in the dark and cuddling up with Batman and Boo. Then danger strikes as my partner’s son becomes ill. Now I can’t be anywhere near them both or it could very well kill me. When I go to get my white blood cell count checked, it is borderline low. I am warned that I am really in a dangerous predicament because some kind of stomach virus was going around.
Three days before my birthday, I am supposed to go to Amy’s and celebrate with my second family. Kim has the stomach virus which got both Amy and Marilyn sick. It is too dangerous for me to go and be in contact with them. Well this is becoming a trend. Next comes Mother’s Day and when I am supposed to celebrate my birthday with my parents as well. Early in the week, I had set up a time to be picked up by so that I could get much needed rest and be up long enough that any possible nausea could be medicated in time before the big, rich seafood meal. As usual, My mother forgets that conversation and I am phoned which woke me up. She was giving me a heads up that they were on the way to pick me up which was a couple hours before I had said. She argues with me and hangs up calling me an ungrateful bitch. Really? I start to get up and moving around to take some medication. She phones back that I have ten minutes to be ready and slams the phone down. Well one good thing about having no hair is that I can be showered and ready in less than ten minutes.
When I head downstairs to be picked up, I see that my parents are already there. They are speaking to my neighbors Steve and Dory. She is bawling to them. I am thinking as I grab my sunglasses and slowly descend the steps that this is going to be a horrible day. I don my sunglasses as to not really have to make eye contact with anyone. I get into the passenger’s seat. We head on the long drive to North Redington Beach to the Conch Republic Grill which is one of our favorite seafood places. The entire drive my mother spouts venom out of her mouth as fast as she can speak it. I totally ignore her tuning her out staring out the window. I swallow any tears that try to fall. I will not let her see that she is getting to me. I will remain a rock and be strong and cold.
When we arrive, the place is packed. We have to wait almost a half hour to be seated which of course was blamed on me. The time that I had planned to be down there would have been between lunch and dinner crowds which would more than likely not been as crowded. But hey, I am stupid according to Mom. We are finally seated and it takes a while to receive our appetizer. I am thankful for the extra wait because it gave the medicine time to work so that I was actually hungry. I eat slowly, pacing the food intake. The meals also take quite a while to come to the table which helped me digest with no complications. My father drank quite a few beers during the meal which meant that I got to drive back to my house. I wish that they had just dropped me off and left. But nope, I couldn’t be so lucky. Mom wanted to watch “Dolphin Tale”. She talked almost the entire movie until she dozed off for a nap. Talk about a toxic afternoon. Having to endure the venom is not the first time I have dealt with that. Having to swallow all my emotions to keep my mouth shut does not help my stress levels. It almost is like poison being swallowed and remains in the pit of my soul building up every time that this happens.
The next day comes which is my birthday. I wake up to find out that my partner’s son is still sick. She decides to drop my birthday cake off at my screen door and walk away. I find out that it is there via text message. I check in with Amy and she still isn’t feeling well. I am not going to even call my parents to endure that hot mess all over again. I venture out and grab a movie from Blockbuster some takeout. I spent my birthday alone with Boo and Batman.
I was right about feeling pretty good the day that round two is supposed to start. I am not looking forward to the over two hour sitting in the recliner. I am also dreading the four day migraine from hell. I had some bouts with pain during the two weeks before this round. I managed my pain the best that I could with my prescription Aleve or prescription Vicodin in severe cases. I did get more and more tired over the duration between the rounds. That was to be expected. I go in and start the routine. I keep myself occupied with either Angry Birds or word search puzzles. When the migraine becomes too much, I close my eyes for a little bit.
I go home and as the day progresses I am more tired than I was the first round. The next day I was in so much pain that I could only manage with Vicodin. It took everything that I had to get up to get the booster shot. Everything was such an effort. I was dragging ass through the migraine days. I basically could not do anything but watch TV in between naps. I am eating but not a lot. More like snacks multiple times a day.
On the third day post infusion, I am in the shower washing my hair. I am horrified that as I am rinsing the shampoo out clumps of hair start to come out. I am sick to my stomach. I finish my shower and I carefully pat towel my hair. I comb through my wet hair easily but hair comes out with each brush stroke. My scalp is on fire and burns. I just break down bawling. I am completely horrified. I am just exhausted physically, mentally, and now emotionally. To make things worse, I start my period. I am usually pretty anemic during my periods so this exacerbates my exhaustion.
Each passing day, I hate to take a shower because of the hair loss. I begin to feel like a monster. One day, I slept for almost 15 hours and when my partner finally realized that she hadn’t heard from me she ventured upstairs to check on me. She woke me up and asked if I had eaten which I hadn’t. She advised that I need to eat to keep up my strength. She looks at me differently now. I ask her just to cut the rest of my remaining strands of hair off. She obliges and takes me for a drive to get me something to eat. I start wearing a bandana now anytime I go out of the house.
A few more days go by and I get a little stronger with each passing day. I go for post port surgery checkup. Everything looks good there. I am also advised that I did have the BRCA genes at all which is good to know. I then go to get my white blood cell checked on which is fine so no booster shot is needed. I am depressed and more of a recluse than normal due to being so tired. I am also somewhat self-conscious of being out in public. This is when others look at you with pity in their eyes. It is hard to remain positive when all you receive is pity and not the real support that you need. The bald head and bandanas, baseball caps, and head scarves are the poster image of what everyone sees with cancer. It is the poster of chemotherapy. When I see someone now in that situation, I do not give them a pity look. I smile and give them a positive nod. To me that signifies, I know what you are going through because I have been there and done. So please do not give pity. Give a smile and positive strength to those you see.
I head into my partner’s place before I head off to have this poison voluntarily injected into my body to wipe out possible remaining cancer within my body. I went inside expecting some love, compassion and support. I was met by silence and reaction as to why be I there. I left so angry that it was eating away inside of me. Why am I still in this non relationship? I am not getting anything out of it. In fact partially because of it, I am living through this horror called cancer. The toll of being in a toxic relationship at home and at work. I am the victim of it twice over. I am the one that has to suffer. Granted what doesn’t kill me makes me stronger. I remember that all too well from recouping from my crash injuries. As my theme song “Chasing Cars” states:
“We’ll do it all, Everything on Our Own, We Don’t need anything or anyone”
I drive down to Florida Cancer Specialists. As each mile crawls across the odometer the more and more I become anxious and nervous. I am taken back into the laboratory where some blood is taken and immediately tested. I go back and meet with Dr. Shaikh. The pet scan was clear. No more signs of any remaining cancer within my body. My bloodwork numbers look good to start my first of four double chemotherapy sessions. I go into the infusion room and take a seat in one of the recliners. A nurse comes over and gets me prepared. She sprays some numbing spray onto my port area. She sticks the infusion needle into my IV port. Man that smarts with some pressure. The port is flushed. I am handed a bag of Emend which is four pills. Inside are two more prescriptions of two different nausea medications. Nurse explains that with the Emend taken on chemo day and the three following days should take care of the majority of the nausea symptoms. She explains that if I feel nauseated to try using one of the other medications. It will be different as to which ones will work the best for me. She explained some rare cases that it takes both of the other kinds. My portion of the Emend bill after insurance was $60 bucks for four pills. Are you freaking kidding me? I pay for the medication. She explained that the first bag would be some steroids. This would be help speed up the effect of the Emend pill before the actual chemotherapy is administered. I take an Emend pill and the bag of steroids is started. I play Angry Birds on my smartphone for a little bit. The Emend makes me feel dizzy and I start to get a migraine. Both are possible side effects of the medication. I work on some word search puzzles for a little bit. After some time passes, the bag of steroids is done and a bag of a fourth kind of anti-nausea medication is started. My head is pounding. I close my eyes for a little while. I am really scared about getting sick. I am thinking to myself there are now two kinds of medication in my body now to combat that. I have prescriptions for two more kinds which I need to fill once I leave here. My mind is spinning with thoughts. A large bag of chemo is started and that takes about an hour to go through. I have already been here for two hours now. Now a large syringe with deep red liquid inside is the final chemo dose for this session. The nurse has to slowly inject that into my port line. I am to return tomorrow to receive a shot which help boost my white blood cell count. I am sent on my way for the day.
I leave still dizzy and with a pounding headache from the Emend. I head to Walmart Neighborhood Market to drop off the two prescriptions. I will return later to get them. I go home and lay down for a bit and watch some TV. The headache is never-ending. I leave to get my prescriptions and something to eat since my partner isn’t up to cooking and I certainly am not due to the migraine.
I eat real slow and afterwards feel a bit nauseous having to take a pill. I am not up to doing much with the constant migraine and dizziness. Batman and Boo stay with me. I sleep fine through the night. I get up the next day feeling a bit nauseous. I take a pill and wait before I try to have breakfast. The migraine remains with the dizziness. I do not feel like getting cleaned up to return to Florida Cancer Specialists for the booster shot but I must get going. Takes me awhile to get cleaned up to go. I just put a baseball cap on over my wet hair from the shower. I go in and get my shot. I am advised that this shot can cause joint pain but to take Claritin it will help with the joint pain. I am reminded that this week is the most dangerous time with being susceptible to infections with the white blood cell count being low. I am to return in one week to check on my white blood cells to see if I need another booster shot.
I head home and for two more days I remain with the migraine and dizziness while taking the Emend. I am really tired and sleeping a lot. I do not do much but watch TV or play video games. I spend a lot of the remaining two days on the couch watching TV staying in the dark due to the migraines. I have bouts of nausea here and there but no vomiting. The dizziness and migraine wears off once I am no longer taking Emend. I make it a week and still no vomiting. The nausea is less and less each passing day. I go back for bloodwork the next week which was all good. I do not require the second booster shot. I make my appointment for round two of the double chemotherapy for the following week. Which means I will go through that all over again just as I am feeling pretty good again.
A couple days go by from being freed from the drain tubes. It is now time to meet the radiation doctor, Dr. Shah. He is pretty laid back and nice. He advises that this appointment is just to get to know me. He advises that his treatment plan will not start until after chemotherapy. He advises though that he will keep up with the progress of my chemotherapy through their weekly tumor board appointments. He advises that the comprehensive approach makes for a more individualized treatment plan. He also states that he has been following my progress through Dr. Blumencranz.
Next up, the surgery gets scheduled to have a port placed into my chest for the chemotherapy. I do not want my parents involved this time. I do not need more of my Mother’s condemning looks and derogatory comments. I advise them that it is just a quick outpatient procedure. They are fine with that.
Next up is meeting the oncologist. This chemotherapy scares the crap out of me. I am terrified beyond belief that I will be sick all the time and lose my hair. I worry that I will be a freak. My relationship with my partner is already on shaky ground. The more I had gotten independent, the less her loving nurse showed herself around me. Dr. Shaikh throws a lot of statistical information at us regarding probability of survival with surgery alone then with surgery and chemotherapy and lastly with surgery, chemotherapy and hormone therapy. My head is spinning with all these facts and such. I am wishing it was just surgery and radiation. Radiation sounds like something I can handle. This chemotherapy is poison being put into your body. I really could care less if I lived a long life. I have endured so much already. Some people never endure even a microscopic piece of misery that I have endured. Like one of my favorite songs says,
“Did you ever think you’d see the day when you’d watch your life get washed away”
I am also thinking to myself isn’t this kind of up to me since it is my body. My mother would vote for me to do everything. My partner, the on again off again lover, is voting for me to do it all. My second family wants me to do everything. At this moment, I do not feel in control of my treatment. I think to myself how ironic that everyone is in agreement for me to be put through this hell. The partner who changes her mind on whom she loves as much as the wind blows in different directions. My dependent, over bearing mother who lives and breathes for just me. My second family whom I only see once in a while. Then I think of Batman and Boo and decide for them, I will go along with it. Batman needs me. He had a hard start in his life and I am his forever human. My cats are the only area of the world that I really fit into. I do not fit into my family. I really do not fit into either the heterosexual or homosexual world. I really just want to be left alone because I have nowhere to belong.
The hormonal therapy is explained that I will be thrown into menopause. It is necessary due to the fact that one of the two cancers was estrogen related. Dr. Shaikh advises that he wants to be aggressive off the starting line to combat the aggressive cancer that was found. He states that I will receive four doses of two different strong chemotherapies. He advises that since I am young and resilient that I should be able to endure the treatment. He advises that I will be prescribed medications to combat any nausea that comes along with the chemotherapy. He advised that there are plenty of medications available now to help with those side effects. He then explained the second part of the chemotherapy regimen will start killing off the estrogen in my body which then the hormonal therapy afterwards will continue that desired effect.
In a couple days, the surgery to have the port placed goes forward without a hitch. Much less stressful without my parents present for this procedure I still get sick afterwards once home and resting. I have come to the conclusion must be something to do with the anesthesia. I have had the pain meds before and not had a problem.
A couple days go by and I go to get an ultrasound to check the placement of the port. I also have Chemo 101 class this day. My partner doesn’t go with me this time for anything. No real surprise but still is upsetting. A lot of information is handed to me. I think to myself that this is such a waste to give me. I am not going to read it. I am not a normal person. I do not fit into any category. Some of the handouts have to do with support groups. I laugh to myself. Seriously? I do not like people nor want to be around them. People aren’t going to help or support me. I am a lone wolf. I will get by my own way. Batman and Boo are better therapists than any human. I am walked through what the procedure will be on treatment days.
A couple more days go by and I go for a pet scan. This test will show if there is any remaining cancer left in my body before chemotherapy begins. Since the first regimens of my chemotherapy will be so strong, any signs of cancer elsewhere in my body would vanish with the first doses. Before the test begins, I am placed in a small room with a TV. I am given some liquid which I must drink all of it. Wow it is sugary and lemony. I guzzle it down just to get it over with. I try to find something to watch on TV. Then it hits me that I have to use the restroom. Time seems to not even move until the nurse finally comes to get me. I practically run into the bathroom to relieve myself. Then I go into the examining room. I lay on the table and the machine slowly reads my body from my foot to over my head. Staying still and in that position makes me stiff. I head back home and eat lightly because chemotherapy begins that afternoon. I am really anxious. Would be really nice to have someone to talk to but my partner has basically already started shutting me out.
“Silence like a cancer grows”
A couple more weeks dealing with the drains has become a way of life. Awkward attachments to my chest which are in the way of everything that I want to do. I can barely move my right arm. I can’t really dress myself without help or I get myself tangled up in the tubes which cause great pain. Still been sleeping on the couch, which I am really tired of being on the couch day and night. I get out with my partner once in a while for small errands during the day just to get out of the house. Batman and Boo been such sweethearts dealing with the sleeping on the couch. I know they miss snuggling up to me in the queen sized bed. But me and the fur babies always manage. I would be lost without them. They are my saving grace. I may be with a so called life partner but I know in my heart that this isn’t the right partner. There is too much baggage between us. I carry a lot of my own baggage. Not being to do much gives me time to really reflect on things. I have come to the conclusion and acceptance that I just really don’t fit into life. The acceptance is a freeing enlightenment taking weight off my shoulders. However, I feel trapped. I feel trapped by work, friends, family, partner, and life. It is not really healthy to have this much time to think and reflect in the silence of your company while dealing with a deadly disease such as cancer.
Since I can’t play video games, my partner gets me a Pirates of the Caribbean Black Pearl Lego kit. Me and Batman do a little work on it each day. I am surprised how he doesn’t mess with the pieces I have laid out on the table. He truly just watches as I put pieces together. The kit has thousands of pieces and with only being able to work on it a little each day helps pass the time when I am not in the mood to watch TV or a movie. Every time I sit at the dining room table to work on the pirate ship, Batman sits right there. He head butts me and leans against me. Such a sweetheart and I would be totally lost without Boo and Batman. Such unconditional love and no drama from the fur babies.
Finally, comes to another appointment with Dr. Blumencranz. How I am praying madly inside to have these drains taking out. I feel uncomfortable in public anyway but to have these things hanging from my body and attached to my shirts make me look as if I have a growth on my side. I am also praying so that I can start to move around better and to become more independent. Too much time with the partner is not always a good thing. Dr. Blumencranz looks over the incision area and my wish is granted. He also discusses being genetically tested for BRCA1 and BRCA2 gene to see if I am at risk for ovarian cancer as well. He stated that depending on my insurance coverage that it could cost several thousand dollars to nothing depending on my family history. We decide we will look into what I am covered by Florida Blue.
The doctor leaves and the nurse comes in to remove the tubes. She removes what is left of the steri-strips. She warns me that is going to hurt. She advises that she will go as fast as possible. I mentally prepare myself. The nurse takes off both drain cups and sets them aside. She grabs the first tube and tells me to take a deep breath and blow out hard. I grasp the edges of the examining table. She yanks the tube and I scream and cusses like a sailor. My partner winces watching this long tube coming out of my chest cavity. Holy pain Batman! I didn’t realize that was so long. She advised it was so long because of the lymph nodes being removed the tube went into my arm pit area. She said you will be able to move much better with these both out. Gently keep stretching and slowly start using the right arm more since it has been so long. She asked if I was ready for round two. I gather myself again and grasp the edges of the table again. She yanks the last one out. Man does that hurt. But hallelujah I am free of those bastard drains. I almost want to dance around but refrain from doing so.
I actually got to sleep in bed that night. I have to gingerly get into bed and be aware of how I am laying of the healing incision across my chest. Any extra stress causes pain and discomfort. Boo and Batman happily curl up with me that night. That was the first night of good sleep in almost a month. We all sleep snuggled up together.
I find it very hard to move my right arm. It feels as if it is being stopped and is painful to move. I try to do my best to not be such a burden. The tubes are stitched into my chest. They have to be milked to keep clots from forming. It is a weird and disgusting thing to do milking the clots down into the tubes. The tubes then are drained. With the stitches each day the opening is wider and wider. I leak not only into the tubes but all over my shirts. I just wearing my old t-shirts that I normally sleep in. We keep me cleaned and bandaged as much as possible due to my never ending leaking.
Due to me not being able to completely lay down flat due to pain, I just been living on the couch day and night all propped up. Boo has been sleeping on the stool next to the couch. There isn’t room for both Batman and Boo on the couch with me. Since she is older, she settles for the stool. I always scoot her close to me at night. Batman sits up on the arm of the couch or on top of the pillows. Both have constantly been my side. They know that Mommy is hurting. Poor Batman misses laying on my chest but I cannot have him stepping all over that area. Just way too painful even being bandaged up. Batman just doesn’t understand. Poor guy seems depressed but he does follow me everywhere supervising my every move.
Every day I just keep watching TV or movies. I wish I could play video games but I am not able to move that right arm enough to hold the controller. It is a struggle just to change clothes even with help due to the drains. Bumping them is so painful.
Well it comes to the first appointment with Dr. Blumencranz to see how I am fairing after the surgery. My partner actually has to step into the shower with me to help me wash my hair and help bathe me. It is just enough for me to hold the two drains so they don’t pull out of my chest. We both laugh because she is fully clothed. She says I guess until you are able to wash your hair on your own I will have to shower with you. She advises me that she will let me know in advance when she will be up to do that. She is doing her best to work, keep me fed, take care of her son, and keep up with two households. I know it is daunting. I watched my mother take care of me after my crash. I am at least able to walk which is more than I could after the crash. It took a toll on my mother both physically and mentally. I think that is why she is really not up to helping now. Plus the friction between my partner and her is just not what I need at this time.
We head to the post operation appointment. All looks good. Everything is healing good according to Dr. Blumencranz. He advises that he wants to see me in a couple weeks. He explains that the drains will more than likely be ready to come out by then. The goal is in the amount of drainage. The color had gone from bloody to more a orange. He advised that over time the drainage will be clearer and less clots. He also advised that every day I should see more and more improvement in my movement.
Originally this was to take place on October 7, 2017 but due to Hurricane Irma effecting basically the entire peninsula of Florida was postponed until February 17, 2018. The venue went from Albert Whitted Airport to Vinoy Park due to the Indy Car series which utilizes Albert Whitted Airport for their upcoming season opener race. The crews would be working on setting up the course in the area at that time. This meant that there would be no close parking area which we already faced and dealt with in 2015. There are no good parking garages close to either venue, Albert Whitted Airport or Vinoy Park.
On the papers handed out during the package pickup in 2015 handicap parking areas were shown. But when I tried to pull into those areas, I was turned away. We found a parking garage but had to walk almost 2 miles from parking garage to start of the race, then what I walked during the race, then that 2 miles back to the parking garage. That next day I was in so much pain due to my injuries from my crash in 2007. I cannot walk great distances without repercussions.
In 2016 in response to all the complaints of the parking situation, they came up with an idea of parking at Albert Whitted Airport for a $10 parking fee paid in advance upon registration for the event. I was one of the people who made a complainant about the parking situation being that I am handicapped and so is my mother. So we registered early and got a parking pass. That year I was able to park right near the event area and start of the race. That was such a convenient thing to have and made the event much more enjoyable as it was for my first one back in 2014 which was held in the Carillon area which there were parking garages near the start/finish.
With the date change of the event, package pickup locations were changed from what we normally had in the past. Now the locations were not as convenient for me to leave work, head to my parents and drive them to the location which we normally chose to be in front of the New Balance store at Westshore Plaza Mall. We had always made an evening of it by getting our race packets then going out to dinner. Westshore Plaza Mall is just across the Bay from us and not a bad drive for me during the evening rush hour once I picked them up. I had to take off of work early to travel way into Tampa by Hillsborough Ave and Lois Ave. The location was at Crunch. Here I am handicapped and overweight walking into a gym full of young and skinny people. That just made we feel so out of place. My parents felt funny walking into that location as well. At least the location in the mall was in the area outside of the New Balance Store. The area was not in the way of anything. Here at Crunch the pickup was right by the doors and we were in the way of people coming and going. I should have known this was a sign that this was not going to be a good event. But the volunteers there did mention “Survivors Dinner” which I never knew about before. I knew they had a VIP dinner for a donation. I thought since this was my sixth year as a survivor that we should participate. Boy was I wrong.
Prior to the event, I had left my house late to pick up my parents which was my fault. I arrived and my mother wasn’t ready. We had to wait a few minutes before we were ready and loaded in my car to travel. We start on our trek towards downtown St Petersburg, my Mother had forgotten her glasses. So I had to make a quick U-turn to head back to their house to get her glasses. My father was instructed by me to research the parking. Come to find out he did not. He is retired as well as my Mother. I work 40 plus hours a week. Now I can’t drive and look at Google Maps. Suzanne had already arrived down there and parked in the Sun Dial parking lot. I just decided to head there that way we would not be too far from each other once the event was over. This was another sign that this was not going to be a good event. Found parking in the Plaza garage right next to the stairs on the second floor right by an intersection. This would make it easy to remember where we parked. This was across from the Sun Dial Mall itself which was near where Suzanne had parked. I followed my father after I helped my mother down the stairs thinking he knew where we were heading. We walked two blocks to the south before I caught the fact that we needed to head East towards Tampa Bay. I made a mental note that no more will I allow him to just take off walking. I will have to do my own research on things that we plan to do.
We start our trek to Vinoy Park which was almost a mile. We found a bench and I kept Suzanne updated as to where to find us via text. This allowed my Mother to rest. Once we were all together we walked around the vendors tent. We walked near the Survivor Tent. I only saw cookies on trays out. That is not dinner plus sugar feeds cancer. There were not as many vendors. There also weren’t as many water stations in the area which meant water was hard to come by. We headed towards the VIP tent. We got up to the donation station only to have one of the volunteers tell me “This isn’t for you. You need to be over at the survivor’s tent.” I replied, “I am with my family and I only saw cookies over there. I don’t want cookies.” My Father was standing there holding $40 to pay for our entry into the area. Another volunteer said, “No the food should be out there. Wraps and salads.” My Dad put his money back in his wallet where both volunteers could see and said “I guess you don’t want my money then. You just lost $40.” I turned and walked away saying, “This is my last race. I am done.”
I now felt like I was being discriminated against by being a survivor. Again, I was treated as if I do not belong or worthy enough. I get that every day of my life because I am a square box in a circle world. It takes a lot for me to be out amongst crowds due to my social anxiety and PTSD. It truly is huge effort on my part. I used to feel a part of something bigger than myself because there are so many breast cancer fighters and survivors. We sat down on a bench so that my Mother could rest. I was fuming inside. My father was also fuming. Suzanne and myself started making jokes to try and lighten the mood. I knew I had to calm down so that the stress would not consume me. Stress is a trigger for cancer as well as sugar feeds cancer. My mother said, “When something becomes more of a hassle then it is worth, time to ditch it.” My philosophy exactly Mom. From dealing with my crash injuries then cancer, I came to feed off that philosophy quite a bit. Many found themselves on the ditch side.
Eventually as it neared time for the survivor parade, we wondered towards the survivor’s tent. I looked for the signs which are usually held up to designate survivors by the number of years being a cancer survivor. They were handing out stickers instead. I thought to myself, “Hell I can’t even get to stand amongst those that are 5 years plus.” I was looking forward to that since the walk in 2016. Third and finally strike just solidified my decision that this was the fourth and final event. Besides I thought to myself as I stood in line for the sticker, “I have no more room for any more medals. This will fill up my stand where I hold my collection of race cars.” I did spot some mini finger food on a tray next to the mounds of cookies. I shook my head and laughed to myself. I did the survivor walk and looked around feeling totally out of place. We stood for a photo making a ribbon for the aerial photographs. I made sure that I was in the back and out of the way. I really didn’t feel like being there. I was starting to get a migraine.
Dad made his way to the front of the start so he could work on his pace. He always walks the entire 5K. He wanted to best his time from last year. Me, Mom and Suzanne headed to the very back. We just meander along for a bit and then find a spot to sit and wait for him to return. Neither myself or my mother need to be overdoing the walking since we still had the trek back to the parking garage. Once we stop, me, Mom and Suzanne have a blast just chatting about anything and everything. Normally on the old course we would sit at the corner by the Vinoy on a bench facing the marina. On this course, we sat at a picnic table near the dog park. We talked about the “haves” and the “have nots” along with our people watching. I also filled in my Twitter besties about the situation so that they could add their comments to my rant via Twitter. I am so thankful for them. Suffering from social anxiety, they allow me to be social in a way which keeps me comfortable. My besties are the best support anyway can ask for. We chat about anything and everything. Without social media, we would have never met.
Due to social media, I can share my story in hopes of inspiring others by my courage, resolve, and journey. I also can share my experience to possibly save someone else from experiencing what I have experienced. I wish the organization of Susan G Komen Race for the Cure well but I can no longer be a part of it. There are other organizations out there for breast cancer survivors and I can throw my support in that direction along with those that will follow my lead. Cancer sucks for those that are fighting it, have fought it, and those that support the fighters. When one of us gets cancer, the family and friends feel like they have it as well. Cancer has the snowball effect. So me, the lone wolf, will take pinkwarriorbatman elsewhere. I thrive as a lone wolf and I am more than pink.
March 1, 2012
Morning comes and I am anxious to get home to my fur babies. My partner has to go pick up her son. Amy arrives to take me home. I wasn’t allowed to be discharged until I was able to hold down some solid food. The anesthesia and pain meds had made me very nauseous the day prior. I had gotten sick a couple times. I get a ham and cheese omelet. Amy gets me all situated before the food arrives. I begin to eat gingerly and everything goes well. Amy and I are given discharge instructions.
Amy gets me home. She turns the air conditioning down for me since I had to have it so cold to feel comfortable. All the extra bandages and my body beginning to heal itself had me a bit overheated. There is no way that I am going to be able to sleep in bed. Just too painful so Amy gets me my pillows and gets me set up on the couch. I am so happy to see my fur babies. They both greet me. Just being home and around them has me feeling so much better.
Amy checks on my drainage tubes and it appears to be time to empty them as well milk them. I was kind of shocked how involved in this process Amy wanted to be in. She listened intently and watched the nurse demonstrate this at the hospital. My partner comes up to relieve Amy. Amy had just finished with cleaning up. I had just got back down onto the couch and was settling in get comfortable. I could sense the jealousy in the room with my partner. I rolled my eyes when she wasn’t looking. Batman jumped up onto the couch and wanted to lie on my chest as he always had done. Unfortunately, there was no way I could let him. Poor little guy didn’t understand. I had to keep pushing him down to my lap. He finally settled down on my lap. He wanted to be near me so bad. Boo comes and lies in the pet bed on the floor in front of the couch.
I spend most of the time napping on and off and watching The Big Bang Theory on DVD. I was catching up on the series. There were eight episodes per disc so it was easy to watch and not have to move much. I knew from the accident and how the body needs to heal I just needed to relax and take it easy. Batman and Boo stay constantly by my side or at the least have me in sight. My partner makes sure that I keep hydrated and fed.
The next day keep in mind that my partner still has to work and has her son to take care of. I mainly needed to rest and take it easy. The house hadn’t been cleaned yet and I hadn’t felt like really trying to tackle washing my hair. My partner did a sponge bath because I wasn’t to mess with the bandages as of yet. My parents stop by. My partner jumps at the opportunity to run to the grocery. My mother has a fit about the house and my hair. Seriously, who the fuck cares Mom? Everyone knows I just had surgery. No one is going to care really. Suzanne and Rodney were going to stop in after their shift to visit with me. They would not care. The stuff this woman worries about causes me more stress than is necessary. My partner returns from the grocery then my parents leave.
While Suzanne and Rodney visited, my partner was able to get some things done between both my place and her place. I wasn’t quite fully able to do much other than to get up and go to the bathroom and fetch myself something to drink. My partner had bought me some flexible straws to help me not to have to lean up so much.