Sometimes when I feel completely stressed by the weight of this diagnosis and the mounting cost to essentially give me the possibility of a long and healthy life, my only means of escape is to pretend that I'm not REALLY a cancer patient, I just play one in the parallel version of my life. Of course that type of mental vacation only works when I'm not heaving my guts into a plastic bin, light headed from any number of things, anxious at upcoming test or treatment, having trouble sleeping and/or sitting at one of my numerous doctor's appointments.
These little mental outings would probably work better if I was on Xanax or Ativan but once again we must remind ourselves that I have been given the Oncologist that is hell bent on me remembering every gut wrenching turn of this whole insane ride. Yep, I'm blessed like that...don't be jealous.
Since being home I've allowed myself to slip into the "normalcy" mode where I am delusional enough to believe that I am in control of my life and the things that happen in and around it. Again, these moments would be less painful to rebound from if I had a medicinal parachute, so to speak. That way I could be let down gently instead of plummeting to the ground. Apparently I got a little overzealous because I assumed that since I was feeling really good this week, which was a first since being discharged from Tulane, that I would be able to make plans. And then I was stupid enough to believe that I would be able to keep them.
Yesterday I woke with a slight fever so I immediately had to scrap plans to head over to my best friend Mar's office in order to thank her boss and other city workers for their time and blood donations. It's really important to me that people know just how much both my family and especially me are so humbled and grateful by the outpouring of support.
Today was the first day of the fundraiser at a Le Cafe de Bon Temps and I was looking forward to having lunch there with my mother and two daughters as well as having dinner tomorrow with my husband and some friends. The owner of the restaurant had agreed to take 10% of revenue from lunch and dinner for two days and donate it to assist with the rising cost of treatment. On top of those plans, my very best friend since childhood would be making a 6 hour drive to come and throw my oldest daughters 16th birthday party on Saturday. Then on Sunday my mom, who has been my rock to this point, would be flying back to Georgia and taking my youngest daughter with her to spend the summer.
I was excited that more of my days housed time with family and friends as opposed to clinic and doctor's visits.
I had been feeling so horrible when my dad and sister came to visit over Memorial Day weekend that I was looking forward to having visitors and actually being able to be up and about. Everything was going great until I got a phone call from my doctor on Tuesday afternoon. I was already a little emotional before getting the call because of having to postpone my visit to see my friend and her co-workers. So when I missed the incoming call and was left to decipher what the message said it was almost enough to put a girl over the edge.
Then I spent another hour trying to contact my doctor back so I could get further information. While I do think that my doctor is good and thorough, I am hung up on two things....her inability to speak clearly to me and the fact that she is so against any type sedatives or pain medication. She is out of her ever loving mind if she thinks I am going to just bite the bullet through all of this.
I finally managed to reach her and was told the results of my latest bone marrow biopsy were in and instead of just telling me what the results were she was insistent that I come in to the office.
She had scheduled an appointment for me at 8:30 a.m. on Wednesday. She kept repeating Wednesday at 8:30 a.m. like I was either deaf or a complete idiot. I almost had to stop myself from saying, "it's on Wednesday right...like the day after today but before the next day? And it's at 8:30 a.m., like morning time, not to be confused with night time?", but I figured that would only frustrate me more and the humor would be completely lost on this woman.
I was more than a little pissed that she wouldn't just tell me what the results were. I asked her if I had to have labs drawn or anything of that nature that would necessitate me actually physically having to go to the office, to which she answered no. This is all fine and great if a simple doctors visit to get test results meant just driving to the other side of town and popping in to hear the results. All of which, in the world of private health care takes all of maybe an hour. Unfortunately, for myself, my mother...our butts that have to sit in uncomfortable chairs and our nerves that are frayed to the point of possibly breaking, our day was going to start early and take several hours.
I tried to think happy thoughts but trying to pretend that I wasn't a the cancer patient whose life and whose family's life has been turned upside down, was proving a bit more difficult today. Sadly, every time I think we are getting the pieces back into some semblance of order the disease rears it's ugly head and reminds me that both it and my health care team are the one pulling all the strings.
I'd like to say that I waited patiently in the clinic to be called, but if God is trying to teach me the lesson of patience he needs to hurry the fuck up. It is completely unnerving when you are told that there are test results that you know can have a bearing on your life...like your actual physical life of being in existence on this planet and then you are told, "I'd rather discuss these results in person"...yeah, the I'M FREAKING OUT factor goes up about a million notches.
Finally after 4 1/2 hours of waiting....seriously people if anyone reading this in uninsured, you have been forewarned...no private health care coverage equals you will sit and wait until the end of eternity. Just a little health care tip from me to you...your welcome America. So after we had put in our time I was rewarded with the news that my bone marrow had come back clean.
And now I can release the breath I had been holding since yesterday when getting the phone call.
Then the doctor comes at me with the news that since my results were clean of any blasts which are the leukemia cells I would need to start the next phase of chemo therapy. GOOD NEWS!
She went on to tell me that since I had been responding so well to the initial round of chemo that I'd had back at the time of my diagnosis, there was a possibility that we were only looking at another 5 rounds of chemo, one of which would be coming up really soon, in order to get me into full remission. GREAT NEWS!
I thought this all sounded like AMAZING news...until she told me I would be expected to be admitted on Thursday. Ya know like the day after TODAY!
In that split second I felt all the positive vibes of having plans and things to look forward to just seep right out of me. It became clear once again that I am not in the driver seat at all times when it comes to battling this disease. I am going to have times where I am at it's mercy or the mercy of the drugs used to rid my body of it.
While my heart breaks at all the little things I will miss....
- Celebrating Olivia's 16th birthday with family and friends.
- Being in my own home in my own bed.
- Going to dinner with family and friends to see and thank those who are taking time out of their life and money out of their own pockets in order to help my family.
...I know that my priority needs to be treatment and getting to remission. Achieving that will hopefully leave me another few decades to make up for the months spent focused on my new arch enemy...leukemia!
As long as this cancer understands that I will give it time out of my life but NOT my life in general then we should have no problems. I can give it time. I can even give it the itty bitty hairs that have started to grown back on my once bald head. It can have almost all my energy and some of my sanity (although there isn't much of either) but it cannot have my spirit or my existence. That's just where I draw the line at the give and take.
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