August 1 - October 13, 2010
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.....
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!!"
I know that it has been a long, long, L-O-N-G while since posting and I had said somewhere either in a past post or in my chemo induced brain fog that I wouldn't cease to post and in a sense "let the cancer win". I apparently had seriously underestimated exactly how tired one gets in the actual moment to moment battle against a disease that is hell bent on destroying me the way that I destroy jewels in my beloved time passer Bejeweled Blitz.
It's been a wild and crazy ride since the post at the end of July. I welcomed the very anticipated return of my mother and Hannah. With Jon working wild crazy hours (leaving the house around 7:30a and not returning until 10p or sometimes 11p on any given day) close to 6 days a week, every week and him having to run our unlicensed teenager everywhere that one teenager needs to go at any given moment leaves very little time to care for a wife who at times needs assistance making it the 50 feet from my bed to the bathroom. And when all your consuming in a 4 hour period is about 4 bottles of water you can imagine how many times this little lady has to make a jaunt to the potty.
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.
"I've come to realize that cancer has made my bladder revert back to the holding capacity of a 2yr old. And it has sucked up any logical thinking and reasoning skills. So when you add in the loss of being able to drive AND the loss of bladder function I've definitely become someone who needs her momma. "
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.
My mom had left on June 13th with Hannah in tow for some time back at home in Georgia with my dad and sister. Not to mention she needed to go and see her own slew of doctors for her diabetes and other health related issues. My mother called everyday sometimes more than twice a day to make sure that I was well and being cared for the way that she had been carrying for me. I had to lie to her a lot of times because A) I hated having her worry and B) no matter how Jon or anyone tries they won't care for me the same way my mom would've if she was still here.
Short of having to change my diaper which NO I have not resorted to those but YES I have actually contemplated it when I became so flippin exhausted from a trip to the bathroom that I actually pulled up the bathmat, turned it into a pillow and plopped down next to Penny to nap before crawling....yes you read that right...CRAWLING back to my bed and then climbing in. I was so exhausted from the crawl and climb that I actually left Penny on the floor for a good 20 to 30 minutes before assisting her tiny hind end into the bed. That was the longest she's ever been neglected since I've been her mommy.
Sadly my dog isn't the only child I've been neglecting. The fruits of my womb have had to learn how to fly solo or rely heavily upon their dad or grandparents. And on very rare and undocumented occasions....they've had to rely on one another. It has not ceased to bother me that this has become the norm as of late but slowly I am getting to understand that my needs have to be put first more times than not. Ugh....that was physically painful to write. While I used to tout that the world should revolve around me as a teenager and at more moments in my marriage than I'd like to admit, it is really hard to come to terms with the fact that this is an actual requirement in order to get back into fighting form where the battle is conquering life and not a disease that is trying to steal it and conquer me.
"I've got my mommy....I'm ready to roll. Seriously...get me an IV pole and let's do this!!"
With my mom back in the house and the start of the new school year just around the corner we all made a valiant effort at having as scheduled a life as possible. There was a method to the madness of clinic visits, PICC maintenance appointments, blood work, ER visits and hospital stays for chemo or any other reason. It seemed that as time went on we were having no issue taking care of the parts that meant getting me better. However, a huge problem that we've all, meaning me, Jon, the kids, mom, mother in law and those within my inner circle have had to come to terms with is making what I would deem "hard and fast plans" to do any number of things for fun or as a family. We'd try to plan something just to get our minds off of treatments and then B O O M I'd start to feel yucky or I'd come back with bad counts meaning I'd need a transfusion or worse a hospital stay due to becoming neutropenic.
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.
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.
After having to miss out on Olivia's 16th birthday at the last minute because the bone marrow and my counts were showing that my immune system and body itself were at the time point where my doctor felt it was imperative to go ahead with the next round of chemo, because in her broken English "no wait time good....leukemia come fast if wait" translated into BITCH you better go get your damn chemo!
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.
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.
When I had gotten a rough time line on how my treatments were going to go following my big miss of Olivia's birthday in June I began making plans for not having to miss another daughters birthday. August 8th came along and we'd began to make a rough draft of party plans after a weekend of feeling pretty damn good. These moments that are few and far between are the only times that I feel as if I am somewhat normal and not being all consumed by AML.
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!
NOT.
GONNA.
HAPPEN!
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.
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!
NOT.
GONNA.
HAPPEN!
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.
"Why do I have to have a doctor that feels the need to ask me whether I've had blood in my urine EVERY flipping time I call with an emergency type situation that has ABSOLUTELY nothing to do with that damn region of my body?!?"
Now that the peace had been disrupted and I had received word from my doctor that I needed to go to the ER immediately, I hurriedly put together a bag, managed to shove my feet into some slippers (purple fuzzy ones that resemble flip flops...did I mention they were fuzzy) my mom slid behind the drivers seat and Jon buckled me into the passenger seat with a kiss on the cheek and a puke bucket in my lap as I held a towel over my eyes trying to shield them from the light that seemed to make me feel that my eyes were being gouged out by lasers. He asked real quick if I'd rather him take me and leave my mom home with the girls, but I said no seeing as he had to work the next day and God himself probably couldn't predict how long we would be sitting in the ER.
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.
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.
"I'm fading fast and I have the sneaking suspicion that if I pass out right now that somehow I would end up falling face first on to this germ ridden linoleum floor and my mask would pop off allowing my tongue to hang out and touch the floor and I'd have to undergo a Silkwood scrub of the interior of my mouth."
My mother pulled into the Emergency Room drop off area and I had to fish out a mask since I was pre-warned by my doctor, after she finished her incessant questioning about my urine, that my counts may be low therefore opening me up to a slew of possible infections due to airborne germs. I donned my mask, grabbed my purse and made a shuffle to the door. My mom had to park so I was flying solo as I maneuvered my way around other patients in the ER waiting room. It seriously took me about 5 minutes to get from my vehicle to the door and I was heartbroken when there was no nurse at the check in desk. Luckily one made it just as my knees were about to give out and met my nearly falling fanny with a wheelchair. She had to complete the check in process and save the signature for my mother because by this point I had barely any vision remaining.
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?
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?
I was checked in and whisked back to a curtained gurney/bed within 10 minutes of hobbling into the ER. A little ER tip from me to you....wearing a mask when you walk into an ER will get ya handled a lot quicker than without. Oh sure...it may be the bald head, PICC line in my arm, bruises covering 90% of the visible parts of my body and admittance of just undergoing chemo less than 30 days before, but I'm really thinking it is the mask. We had gotten to the ER just a few minutes after 7pm.
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!
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!
"Ummmm.....liver? Huh?? What??? Huh?????"
So instead of gearing up for my next scheduled round of chemo I landed myself in the tailspin of "name that cause". Residents, med students and fellows seemed extremely puzzled at what could possibly be pissing off my liver in such a way as to spike my liver enzyme level to the "danger zone" (their words NOT mine) of close to 1100 when they are usually between 16 to 100. Their real worry, as if that wasn't enough, was the fact that I had just had a complete blood panel run on Friday, just a couple of days prior and my levels were well within normal ranges coming in at about 44. So what had happened that had pushed me into such a catastrophic position within 72 hours of that panel being drawn?
Their first area of concern was the blood transfusion that I had following the CBC on Friday. Their initial reason of concern was for me as a patient with Leukemia, which is a blood born cancer, having what they feared could be a possible reaction to a transfusion of blood products could spell disaster. If the leukocytes continued to devour the healthy cells and they would need to transfuse me with red blood cells or platelets and my body could neither tolerate or worse accept the products it could spell death because the chemo would kill off both the leukocytes and any healthy cells as well and transfusions are the only way to get my blood and my system as a whole back to a healthy station where it can begin to make these cells on its own again in healthy quantities.
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!
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!
Hours turn into days and the levels of my liver enzymes begin to return to normal levels signaling that thankfully the cause, although still unknown, has not done permanent damage.
They think.
Possibly.
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..
They think.
Possibly.
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!
"Well if you're not going to pump me full of chemo and your not going to remove my spleen, what are you going to do with me? Should I be worried that you look like your going to tell me something I'm not going to be happy to hear?"
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..
The excitement of the news didn't get to last too long because I was informed that while clean marrow and spinal fluid results bring me closer to remission I still need to be very aware that the fact that I have acute myeloid leukemia means that these leukemic cells can reproduce from small amounts of cells to overrun my system once again, in the same rapid fashion that they had taken a hold of me the first time, so another round of chemo was still in my future in order to give me the best opportunity of attaining remission and hopefully not having any relapses. Of course when I asked the question of "when precisely, would I be able to have the next treatment?" Well, I'll just say that....hmmm, yeah...they weren't as forthcoming with that.
"Obviously your version of soon and my version of soon are SO very, very different!"
My "quick and painless ER visit" turned into a 6 day stay dealing with my liver, extreme bouts of nausea and severe upper left quadrant abdominal pain. And while we all took a moment, especially me, to celebrate the milestones I've reached at this stage of treatment with the clean bone marrow and lumbar puncture it never seems to be far from my mind that this is far from being over. Oh Dear Baby Jesus....I don't know if I can take much more. The ups and downs of emotions were only foreshadowed by the consistent ups and downs of my counts.
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.
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.
"If I don't take time to celebrate the tiny victories I run the risk of going stark raving mad. So, yeah...that was me high fiving my kids because I was able to eat and hold down 2 pieces of pizza! You gotta problem with that?"
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.
"Trust me when I tell you that I had my uterus removed in 2004 if there was blood coming from that region I would be keenly aware that SOMETHING was happening that was no longer a normal function as of 6 years ago! Mkay? Let's move on."
I assured her there was no blood and once again had to calm my nearly frayed edges at what I have deemed to be a ridiculous question given my medical history. It's called a hysterectomy sweetie...look it up!
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.
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.
"I know I don't usually ask for the anti-anxiety drugs this early on, but yeah....I'm gonna need those now. Oh...wait...your just the admitting rep...fine I guess I can wait until a nurse comes in."
I know I've said this about a billion times already. WHEN YOU GET CANCER THIS SHOULD BE THE #1 TIME IN A PERSONS LIFE WHERE THEY SHOULD BE GIVEN CART BLANCHE WHEN IT INVOLVES MEDICATION. It should be set up like a God damn candy store for cancer riddled patients to go in and just have their pick. Instead of the magical Willy Wonka/Pfiser/Kaiser Permanente/Eli Lily/Godiva filled utopia I've created in my mind where I can go to get Ambien for the nights I can't sleep, FentaNyl patch for the unrelenting pain of my enlarged spleen, Prozac for the emotional instability, Nexium for the acid reflux, Phenegran or Zofran for extreme bouts of nausea, Xanax for the anxiety and Oxycodone for the breakthrough pain. Instead I am left in a war of the words with care providers (ESPECIALLY my oncologist) that feel it's best for their patients to be lucid while puking up their insides, feeling as thought their bones are being crushed by some imaginary vice that has appeared out of nowhere and hops from one body part to another without cause or reason. I find that approach to be downright ridiculous and cruel.
They come in looking all concerned as I am rolling about feeling like I'm smack in the middle of either being part of an exorcism or possibly on the brink of childbirth minus the epidural and launch into some prefab speech about how narcotics and opiates are going to cloud my mind and keep me from being sharp and focused. I get to a point where all I am hearing is "waa wa waa waa wa" like the grown ups in Charlie Brown and then I begin to fantasize about stapling their ear to the closest wall and asking them if they'd like to continue to feel that pain or maybe have something that could take the edge off of the discomfort.
Once we had dispensed with all the formalities of how this round of chemo was going to proceed which basically was a reread of the two previous treatments it was time to get the show on the road.
"The fact that this could be the LAST round of chemo I ever have to partake in is much more emotionally overwhelming then I ever imagined."
As I sat in my hospital room being hooked up for the first of 2 doses on September 1st I was concerned with only 2 things. #1 - being able to get done on time (meaning being in the hospital no more than 7 to 8 days) and #2 - feeling better as fast as possible afterward so that we could prepare for Hannah's birthday. Every thing else...to me at least, seemed like it would take care of itself.
I trusted my nurses and doctors to take care of me just as they had on all my previous stays. On day #3 we hit a bumpy patch when my liver enzyme levels took a dramatic spike and my blood test came back showing a bacterial infection. They redrew and pulled from my PICC line as well as from my arm. A few hours later it was confirmed that my PICC line that had been put in back at Tulane on May 11th would need to be removed. I dreaded what would happen now because I was still getting chemo and would need another PICC or worse they would have to put another central line in my neck. But day #4 brought lower levels, a brand new and bacteria free PICC line,dinner from Jon and the surprise of my Dad coming from Georgia to spend time with me in the hospital. Days #5, #6 & #7 were laid back and relaxed as I had the remaining rounds of cytarabine without any real issue. Day #8 brought the end to my Dad's visit and no discharge for me due to extremely low WBC & RBC. On day #8 with platelets, WBC & RBC all where they needed to be I was discharged and Jon came to pick me up. We haven't had time alone with one another that didn't consist of him holding my hand while watching television as I drifted in and out of sleep from my medication or me groggily trying to listen about his day at work when he'd come home after working 16 hours.
So when he offered to take me out to eat, just him and I seeing as I had just spent 9 days having meals that while nutritious weren't that appealing it took me less than 1/2 a second to say "HELL TO THE YES"!!!
We had a quiet but somewhat quick meal. And I think I savored the feeling of normalcy in that hour more than I did the food that I put in my mouth. Yes there were faces looking and whispers because of my bald head that I had decided not to put a hat on. That paired with my jeans that were about 4 sizes too big (being in and out of the hospital on top of not being able to drive myself anywhere or have the energy to walk around to shop coupled with my dramatic and continued weight loss made having clothing that fits very difficult) and my extreme pale skin made for some looks of pity and curiosity. I'm sure it may have helped if I would have removed my hospital bracelets, especially the bright green one that had "FALL RISK" scrawled across it in large bold black letters. But if I've learned anything from this experience I am not here to worry about those around me think. I'm here to be happy, healthy and finding the humor in everything.
"Savor the good when it's there and hope that there is enough left over to sustain you through the times that are rough."
After arriving home from my last round of chemo the only thing that I wanted on my radar other than my weekly CBC appointments and my next follow up with Dr. Z was making sure we had everything ready for Hannah's birthday. I had 24 days until her party and in between my discharge and the actual day of her shindig there were a few landmines that I needed to make my way through without detonating them, so to speak.
September 10th - CBC & PICC line maintenance with Ms. Theresa: platelets low but Dr. Z said can skip transfusion because I am set to see her on Monday
Phew....made it through...1 down 2 more to go.....
September 13th - CBC & Eval with Dr. Z: labs came back with dangerously low platelets, unable to see Dr. Z today because she wanted me taken to the hospital ASAP for 8 units of platelets. Have been advised that if I have any uncontrolled bleeding or the appearance of large bruises to go to the ER immediately.
Well that was a little too close for comfort....2 down 1 more to go.....
September 17th - CBC & PICC line maintenance with Ms. Theresa: was not feeling very well at all, feeling winded and dizzy, with no appetite and cold sweats. All counts came back dangerously low and I began bleeding profusely from my mouth. Theresa called Dr. Z and I was rushed to the ER (arrived @ 10:30a) and admitted to the 7th floor @ 9pm.
BOOM....guess I didn't tread lightly enough....this landmine earned me a fabulous 6 day 5 night stay at the magnificent LSU Interim Public Hospital room #724.
"I'm either feeling VERY lucky or I've got a bad case of gas."
I was happily discharged on September 22nd a full 5 days from Hannah's actual birthday and still in just enough time to still be feeling well enough to attend her party. I was thinking happy thoughts. I was living in the positive. I was COMPLETELY the glass 1/2 full person and then I went to a follow up with Dr. Z regarding a large lump that had formed on my right inner thigh. The date was September 27th and before I even had time to think about what we could make for dinner that night to celebrate Hannah's special day the words, "you're going to need to go directly to the hospital to be admitted right now" penetrated my thoughts of fettuccine alfredo and garlic bread.
I'm sorry. I don't mean to sound like an idiot.....but, huh? What? Huh?
"Thank God I'm not a gambler or else we would've lost big time on this revelation."
So it turns out that I'm running a fever (102.9) and I've got a large hematoma and to ice my cake of misery that is being admitted to the hospital on your daughters 11th birthday is the fact that I have a staph infection! It's like some kind of sick persons tri-fecta. Thankfully the admitting process was pretty quick. From the time we arrived in the door to the time I made it into a bed it was just over an hour. I spent the next 5 days doing whatever I had to do in order to get out in time for Hannah's party.
I did get the sneaking suspicion that the universe was working against me when I had to have the new PICC line that had been put in on my last stay removed. This was not horrible because now that chemo is complete for the time being I don't really require it. The flip side however is the fact that I have horrible veins so to put an IV in my arm is a bitch and to get it to last longer than 12 to 14 hours is a whole other issue. So day #2 brought the removal of the PICC line due to a bacterial infection and then came the revolving door of IV's.
By the time I was finally discharged on October 1st, the day before Hannah's party, I'd blown 3 IV's. I wore my bruises like they were war wounds from battle. All I cared about was being able to be there with my family, friends and Hannah to see her blow out her candles.
A few days later my baby sister arrived which also signaled the end of my mother's stay. Since I was beginning to do a lot better and there was no chemo on the horizon it was agreed that my mom was going to go back to Georgia for a little while to spend some time with my dad who had been abandoned for all of these months while my mom had come to care for me and my family. My sisters visit was short and I spent most of it either with my head in a bucket or in and out of sleep.
"Is this the part where you're gonna try to get all mushy but then I'm gonna laugh cause you look retarded? Or is this one of those times where you pretend like your going to be sentimental and you get all close to me so that you can fart? I'm just wondering how I need to play this....."
On October 11th with my mom and my baby sister by my side I went to see Dr. Z for my follow up and was handed the biggest piece of good news since hearing that my bone marrow and lumbar puncture were clean.
I'M OFFICIALLY IN CLINICAL REMISSION!
Two days later I had to wish my sister and mom a safe trip back home to Georgia and get ready to step into the next phase of my fight against the AML. Life in this moment although sad because my mom, dad, sister and some dear and very loved friends are not here with me to completely celebrate this milestone, is so sweet all the same because I truly feared, even though only for brief moments, that I might not have the strength to push through and fight until I had the upper hand.
I feel so unbelievably blessed and loved and look forward to sharing all the stories that I've been either too tired or lazy (apparently chemo didn't kill the procrastination that's been running rampant in my body since about age 7) to write, post and share with all of you.
Until next time.....
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