Once again, I've fallen behind in my posting and I really wanted to share this with you guys. Hope you enjoy and hopefully in 2011 I can get on task with writing on a regular basis....here's to hoping.....
"Damn you cancer and your ability to sap my energy, steal my will to wear things other than pj's and taking my hair and then letting it grow back with what seems to be a permanent bald spot front and center! But mad props for the weight loss...haven't been this size since 2004!!"
If I'd thought cancer was going to be a real nuisance I should have also thought to take into consideration that due to the powerful narcotics that I've been downing in a vain attempt to keep the wrenching pain in my spleen and some of the other phantom pains at bay made it so Jessica + driving were two great taste that unfortunately did not taste great together. And for all those people's lives, plus my own that I've saved in making this decision YOUR WELCOME SLIDELL and NEW ORLEANS!!
I'm thinking there is a definite frowny face given by law enforcement officers to patients or people such as myself that slap on a heavy duty opiate patch and then suck down enough oral narcotics to sedate an elephant just so that I can go run a few errands and taxi my kids all over hell and gone. So that just added to the stress on Jon's shoulders day in and day without my mom's assistance. The first two days were ok. But by day three I wanted her back. Jon says he didn't start to feel the stress of not having her around and then wishing she would be back until about week two, but I think he is just trying to make it seem like he's a super macho guy. When I'm pretty sure by the end of day one when he had to deal with me vomiting, needing help showering, needing something to eat 7 to 8 times in a day because all I ate was a bite or 2 at a time so I had to eat tiny meals about 8 times a day.
You've got to hold fast to hope and be optimistic when something like this blindsides you and literally takes this life you've been creating and living and just flips it upside down and you can't stop the world or the events of the day to day grind in order to get all your pieces back where they need to be and restore some feeling of normal. NO...you just have to pick up what you can and keep moving. While in the hospital in July undergoing my 2nd round of consolidation treatment I made a silent promise that I would try hard to regain some kind of control of this disease and be able to not miss out on the things that are important to the ones that I love.
Although I have gone into the treatment for my AML with the mentality of "I will give you 6 months or a year of being a human pin cushion, pumped with chemicals that could just as much kill me as they could cure me. I will give you my hair and the healthy shimmer to my skin. I will give you my energy, what little I still have. I will allow you to reside inside me until the last round of chemo ekes you out of every nook and cranny that you may have thought was my bodies version of Switzerland with it's no extradition policy for murderers. I will begrudgingly hand over my precious moments of making memories with my family during the 6 months to a year that the doctors said it should take to get me into clinical remission. And then when that time is up I will give you 1 day every 6 months for the next 8 years of my life where my world will stop being about those around me and will be focused on making sure you have not found a way back into my body because you have now overstayed your welcome. I will NOT however, under any circumstances let you have my life. You are NOT going to be the death of me, no matter how you try. I will fight you harder than I have ever fought any one or any thing. I may be out of shape but I am tenacious. Do you hear that tick-tick-tick? Yeah...that's the clock that's telling you your reign is just about over!"
As my next chemotherapy loomed in the very near future around August 9th, which was the day the kids started school, I was excited because I felt as though I was doing well enough that there would be no issue that would keep me from missing seeing them, going to breakfast all together as a family and then dropping them off for school. Hannah going into 6th and Olivia into 11th. The other upside to when this round would be scheduled to start and the amount of time I would need to be in the hospital all fell perfectly with when we were planning Hannah's 11th birthday. Getting admitted and starting chemo around the 9th would allow me to get in, get treatment, have my post treatment in hospital recovery and allow me the 3 weeks of exhaustion and down time that routinely follows the high dose cytarabine (aka drug that sucks the life out of me and keeps the cancer from killing me) before the arrival of Hannah's big day.
As my doctor saw how heartbroken I was at the fact that I was going to miss such a milestone in my daughters life she tried to put it in gentler more motherly words "miss a birthday or celebration now to beat this leukemia and not miss more milestones later....your children be sad if they had to bury you on their birthday". Well gosh Dr. Z when you put it that way....how the fuck can I refuse?
Let me tell ya...when you are one that gives out your opinion or advice without "sugar coating" you don't feel the sting and sometimes you don't even feel bad for saying something that may hurt of offend someone if in the end it will help them achieve or fix something in their life. Getting this said to me, devoid of the "sugar coating" and in an accent that constantly makes me want to say "it's a purse...k" (like the Asian guy in The Hangover") well it was a little hard to swallow and made me want to laugh inappropriately.
Here I'd thought I'd reached my limit of having to suck it up and for lack of a better term "put on my big girl panties and deal". I mean Jesus...it's cancer. Running a muck in my body. I think that should be enough of an adult experience for one year and everything else should be easy peasy lemon squeezey! But I had to repeat putting on my "big girl panties" time and time again.
The list of what was missed in the month of July is as follows:
1) Admission for my 2nd round of chemo, July 9th - 19th: spent my 12yr anniversary in the hospital and missed Olivia's entire run of "School House Rock" which she sung her very first solo as well as opening night to see her in a performance of "Joseph and the Technicolor Dream Coat".
2) Unable to go with Jon and Olivia to pick up Mom & Hannah in GA so I could visit with my sister and dad.
So I'd already devastated my oldest daughter, my husband and if I didn't get this next round of chemo on schedule I would run the risk of putting Hannah in the hot seat of emotional let down. Cancer is nothing if not an equal opportunity life ruiner!
But, as always, we had survived the emotionally devastating, for me it seems more than others, but that Olivia seemed to just roll with not being able to have me there for her 16th birthday. A huge help, I think, was the fact that Allison (my BFF for 30 years) would be the pseudo mom for the event. From her home in Atlanta she took over all of the planing and made sure that everything was handled. The she drove in from Atlanta after stopping in Alabama to pick up another of our childhood friends, Tammy.
She planned the party with my daughter. Handling invites. Baking her cake from scratch which was a first time multiple tiered cake for my pal that could seriously start her own party planning business and making memories that will last Olivia a lifetime while capturing them all on film before making the 40 minute drive to share it all with me in the hospital.
My mom and I had looked at a calendar and counted out how many days I would need to recoup from this upcoming round to make sure we had planned Hannah's 11th birthday party just far enough out so that there would be no way that it would be postponed, canceled or worse....party without the mom!
We had made sure that I was stocked up on pain and nausea meds as well as all the other goodies for the party. We were able to figure that if I started chemo anywhere between August 9 thru 13 that it would allow plenty of time for her party that was being booked for October 2nd.
Feeling a sense of empowerment over having a plan of action regarding this next phase of treatment made a sense of calm fall over the house and each of us began to breathe a bit easier. Having energy on that Sunday evening just days away from when I'd be due to go in for the next, and possibly last round of chemo, found me to be just shy of giddy and getting to enjoy a dinner with my family was the cherry on top of my seemingly perfect weekend. After I finished my dinner I made the trip down the hallway to use the bathroom and then the bottom fell out of my normal weekend. Within the span of 30 minutes I went from peeing to being crouched on the floor in massive guttural pain when I felt a sharp pop in the right temple area of my head. I fell to my knees and began crying out for help as my vision clouded and it felt as if a hot poker was being shoved into my ear. I didn't know how loud I was yelling because all I could hear in my ears was my heart beat. At some point it had to have been extremely loud because I remember my mom kept trying to pull me close to her and put her hand near my mouth in an attempt to make me lower my voice or perhaps suffocate me.
She calmed me down just enough to get me to find my doctor's number in my phone. I dialed it after several minutes struggling to find the number with only one eye barely opened and then had to deal with my mother shaking my Crackberry like it was some kind of futuristic device or an Etch-A-Sketch and not an actual phone. You have no idea how much I wanted to smack her in the face with my phone when for 5 minutes every other phrase she uttered was "I don't know how to use this" or "why can't you just get a phone...like a phone phone...not this computer trying to be a phone kind of phone".
It went a little like this:
ME: Mom, I need you to call the doctor's pager, put in my number and when she calls back I'll need you to speak with her because I feel like I can't hear anything other than my heartbeat banging in my ears. Ok?
MOM: I know how to page people. Your father wears a pager.
ME: Ok mom...ok....just call the doctor.
MOM: Well, fine....but I don't know how to use that (she points in the direction of my Crackberry as if she is pointing to a steaming pile of shit)....I mean seriously Jess, why can't you get a phone phone and not this computer trying to be a phone kind of phone....it's confusing to me.
ME: Ok, mom....well, it's not confusing to me, so can you just focus for a second and hit the call button now that I found the number and it's on the screen.
MOM: Um. What. Huh? How do you make an outgoing call with this computer phone thingy?
ME: Mom...you just push the green phone looking button. It will ring then beep three times and you will need to put in my cell # including the area code and then hit the # then hang up.
MOM: You don't have to talk to me like I'm stupid. I know how to use a phone! And I know how to page someone!
ME: Mom I am very aware that you know how to use a phone and how to page someone.
MOM: Well you talk to me like I'm stupid. It's no my fault that I'm not up to date on all this technology stuff.
ME: (feeling like I'm hearing her voice through an ocean of water sounds mixed in with the extremely loud beating of my heart) Ok mom....I'm sorry....can we please just call the doctor?
MOM: Fine. Of course we can call the doctor. We could have been calling the doctor earlier if you had a normal phone and weren't accusing me of being unable to know how to page someone....
I don't think I had ever been so damn grateful for the fact that I could barely hear what she was saying to me and I wasn't able to keep my eyes open so I didn't have to deal with any hurtful mom glance. It was a win/win situation, well until we got my doctor on the phone.
I tried to crack a smile and give him a tiny peck on the cheek. It was an awkward attempt at best and it failed miserably because opening my eyes made my head hurt more and half the kiss ended up going on the frame of my door. I moaned the entire drive and periodically exclaimed that I was going to either pass out, throw up or fall asleep. I'm pretty sure my mom would have liked any of those options except maybe the puking purely for the smell factor She was racked with anxiety making the drive over to University Hospital.
How I actually believed that I would get to the ER, get a few fluids, possibly a blood or platelet transfusion, a CT of the head to rule out any major issues, something to ease the pain and then be upon my merry way home in order to ring in the new school year with my kids the following morning as I had done every first day of school since their school aged existence. And then somehow be able to maintain the originally set schedule of being admitted for this next round of chemo, which would be tomorrow (Aug 9th) or later on this same week was a true testament to how completely deranged I've become while dealing with this cancer?
By 2am I had to realize that I wasn't going to be going anywhere that wasn't within the confines of the hospital walls anytime soon so I made the decision to send my mother home to try and get some rest and if...big IF...I was able to just be discharged from the ER then my MIL could come and be my escort home, hopefully in time to see my kids off to school...fingers crossed, since she'd be up and about around 6am. The gamble paid off, but not in the way I had wanted or planned. Mom got to go home and sleep and I got to be admitted.
Not a huge deal seeing as I'm no stranger to having to be hospitalized. What shocked me was that I was not being admitted due to a neurological issue (bite your tongue and reserve your mental case comments) as I had thought because I had gone to the ER with a headache. I had been carted to and from CT twice so when the doctors told me I was being admitted in what the doctors cautiously classified as the "possible early stages of liver failure"....I was dumbfounded. I'm sorry....but WHAT IN THE HELL?!?
After that shock began to wear off I became EXTREMELY worried. Yes I had been dealing with the issue of a failing spleen since this whole Leukemia crap began. But you can live without your spleen. So I always know in the back of my head that unruly spleen would most likely end in spleen being removed. No harm. No foul. And hopefully, God willing....spleen out will equal NO MORE PAIN!!! But my liver. Uh....yeah....I'm gonna be needing that to oh, I don't know....SURVIVE!
The next area of concern was the discovery of very high acetaminophen levels meaning that my liver was not filtering out this chemical within my body. My decrepit spleen doesn't help the situation either which if it weren't all hell bent on causing me unyielding and excruciating pain it should be forming a "toxic filtration service" with my liver and pancreas rather than letting this medicine continue to build and build and build and now threaten my livers function.
I'm pretty sure part of why my spleen doesn't want to be a team player is because it hears my constant whining to my doctors, my nurses, my family and even total strangers that it is all my spleens fault. I am shut down by doctor after doctor after doctor that this isn't so bad and that "in time" it will settle down and no longer bother me. Even after repeated attempts of getting these doctors to elaborate on how much time are we talking about with "in time"...I've yet to get a straight answer. And at this point I am rounding 5 months of dealing with this nuisance!
Oh for the love...will anybody be able to give me a 100% for sure about anything regarding my health? Well yes...they were willing to tell me that I was FOR SURE not going to be able to have chemo anytime soon. Apparently "almost liver failure" is one way to get out of having chemotherapy. Geeze, where was this little hitch in the road when I wanted to be able to be at home for Olivia's special day?!?
I'm sure it's wrong to wish for another ailment, but no one ever said I was right in the head!
The team of doctors felt that they should make the most of this "unplanned" hospital stay and get a few test out of the way. Me always trying to stay on the positive side of this disease thought, "hey...at least I will get some good meds in here". Unfortunately if they would have told me what it they were intending to do to me while I was hospitalized I may have found a way to fake that I felt much better.
Instead I got my next bone marrow biopsy out of the way (with sedation this time...yippee) and my first lumbar puncture (without sedation...dear God it HURT) that yielded results of clean across the board signaling that the leukemia cells were either non existent or of such a minuscule amount that they were unable to be detected even under a microscope..
On August 14th I was discharged and got one day of rest at home before having to go back to the clinic for a follow up. I had prayed the night before my appointment and on the way to see my doctor. I prayed that when they draw my blood that my liver enzyme level continued to stay at a less dangerous level, because although I feel I've got the tenacity to dig in and fight anything that the Leukemia wants to throw at me, I'd sure like if I could just go through one visit without a crisis.
August 16th - CBC & follow up with Dr. Z: counts are iffy, not low enough to need transfusion, liver enzymes could be lower but they are not near the danger zone
August 20th - CBC & PICC line maintenance w/Ms. Theresa: Counts looking good. Fingers crossed for next eval with Dr. Z
August 23rd - CBC & Eval with Dr. Z: counts are good but liver enzyme levels have climbed back up into the 900's
August 26th - CBC & PICC line maintenance w/Ms. Helen: Counts are good. Liver enzyme's within normal range - CLEARED FOR CHEMO, due for admit Aug 31st.
I went back to my weekly PICC line maintenance appointments with CBC's and the finger crossing moments until the lab results would come back with counts either signaling a transfusion which meant NO CHEMO or finally reaching a rebound point where I was able to get to the point of sitting face to face with my doctor and being issued a date to be admitted for the next round of chemo. My acetaminophen levels had gone down thanks to a change in pain medication and a strict rule to avoid any thing containing the medicinal ingredient in any dosage amount no matter how small. Which meant goodbye Tylenol, Aspirin, Excedrin, Naproxen, Ibuprofen, Advil, Motrin, Aleeve...etc. It also meant a change in my oral pain medications. Where before I was being given Lorcet, Lortab or Vicodin to help alleviate pain I had to be changed over to medications that did not carry acetaminophen, naproxen or any n-saids. That seemed all fine and dandy until 48 hours before I was due to be admitted and I spiked a fever of 102.9. I called my doctor to ask how I should proceed, extremely fearful that she would answer that I would be unable to go ahead with the chemo that was literally just 2 days away and WELL within my grasps of reality.
First, of course, she had to make sure I wasn't having blood in my urine....seriously, I need to know if this is something that I need to be fearful of with my diagnosis because she either A) meant to pick Urology as her major and in her broken English selected Oncology or B) I've missed the hidden danger of blood in urine in all of the information I have read on AML in the past 5 months in order to understand her extreme concern with this function of my body.
Finally she relented with the damn urine question and told me that if I was really concerned about the fever (which I think is pretty obvious because I paged my doctor....after hours...but who I am except the lowly patient with non blood stained urine and a 102.9 fever) that I could take Aleeve which she assured me had none of such a small amount of the evil acetaminophen that would surely anger my liver thus ending any possibility at getting chemo or as long as I had no other symptoms (again with the blood in urine question....seriously, if I could drink I would make a drinking game out of this verbiage kind of like the word veneer from Antique Roadshow) I could just let the fever ride and run it's course. I was so thoroughly freaked at the minor possibility that she could have been wrong about the Aleeve and the acetaminophen that I just let the fever run wild. And oh how it did. It ran with me all the way to my admittance in the hospital and helped play a part in delaying the start of my chemo for a full 12 hours making my official start a full 51 days from my last treatment.