Journal entry by Susan Nutini —
Not sure where to start here. I've started a journal, a blog, neither one which I was able to keep working on. The journal I want to pick up and give another go; may one of my boys would like to have it down the road. I wish I had done it all my life - so many precious, little day-to-day memories forgotten. My boys are currently 15 and 18. We have lots of pictures and video when they were younger - have to do something with those tapes soon.
I have T-PLL or T Cell Prolymphocytic leukemia. I hope I spelled that right. I think the very first thing that is sucky is that trying to spell the name of my rare and almost orphan disease is tricky and I still have to go google it. In the blog I never posted I think I have some information about my counts for anyone interested - for anyone here looking for information on T-PLL as there is very little. Lots of blogs started by afflicted people where newer afflicted people have asked questions on those older blogs and eventually the answers cease. Are They Dead? I have to think probably. T-PLL doesn't lend itself to happy outcomes usually. It would be certainly nicer to think that they have moved on from their disease and didn't want to talk about it anymore. But I would always hope they would post one last time in any event. Just to say Peace Out. I'm two months in and I'm wishing I could move on and I try to fool myself that I'm fine. Then my spleen tweaks and I know that isn't so.
Anyway, here is what I didn't post initially - it stops at 1/18. I'll try to fill in what follows. Currently I am "watching and waiting" for my leukemia to get aggressive before treatment would be started. The "funny" thing about this is that my leukemia is so rare there is no real protocol for this time period as only a few people like myself present with this slower growing version. Would be nice if that meant this version was less aggressive, but that isn't so. Once it starts to move it will try to kill me the same as if it had behaved aggressively from the outset.
Prior Non-Entry Entry:
"What I find is that my blood counts have been “off” for 2 1/2+ years or maybe slightly more. When I look waaaay back to 2/24/12 they were perfecto. Everything within range (WBC 5.9) including the % of my lymphocytes and neutrophils - 47.2 and 47.3 respectively (my understanding is that these should balance to almost 50/50 as these did). The absolute counts for those were both spot on as well.
I have T-PLL or T Cell Prolymphocytic leukemia. I hope I spelled that right. I think the very first thing that is sucky is that trying to spell the name of my rare and almost orphan disease is tricky and I still have to go google it. In the blog I never posted I think I have some information about my counts for anyone interested - for anyone here looking for information on T-PLL as there is very little. Lots of blogs started by afflicted people where newer afflicted people have asked questions on those older blogs and eventually the answers cease. Are They Dead? I have to think probably. T-PLL doesn't lend itself to happy outcomes usually. It would be certainly nicer to think that they have moved on from their disease and didn't want to talk about it anymore. But I would always hope they would post one last time in any event. Just to say Peace Out. I'm two months in and I'm wishing I could move on and I try to fool myself that I'm fine. Then my spleen tweaks and I know that isn't so.
Anyway, here is what I didn't post initially - it stops at 1/18. I'll try to fill in what follows. Currently I am "watching and waiting" for my leukemia to get aggressive before treatment would be started. The "funny" thing about this is that my leukemia is so rare there is no real protocol for this time period as only a few people like myself present with this slower growing version. Would be nice if that meant this version was less aggressive, but that isn't so. Once it starts to move it will try to kill me the same as if it had behaved aggressively from the outset.
Prior Non-Entry Entry:
"What I find is that my blood counts have been “off” for 2 1/2+ years or maybe slightly more. When I look waaaay back to 2/24/12 they were perfecto. Everything within range (WBC 5.9) including the % of my lymphocytes and neutrophils - 47.2 and 47.3 respectively (my understanding is that these should balance to almost 50/50 as these did). The absolute counts for those were both spot on as well.
1/24/14 everything looks normal (WBC is 4.2) but now my % of lymphocytes is 58.3 (though my absolute count is “normal" - 2.43); neutrophils are now 34.9% and the absolute value is slightly low 1.45; “normal” is 1.7-6.7. Hmmmmmmm
***7/1/15 overall WBC is 6.4; lymphocyte % is 68.3; neutrophil % is 25 - here is the real “start” I guess: absolute lymphocytes are 4.38 (normal is 1-3), absolute neutrophils are 1.6, just under normal.
11/20/15 WBC is 8.9, high for me. Absolute lymphocytes are now 6.41 (again normal is 1-3). There was a pathology report as I think the lymphs were looking a little odd but it was never brought to my attention and the these labs were pretty much ignored. And I was probably an idiot - I think I remember looking at those numbers and thinking - “wow - look my #’s are SO awesome is have MORE lymphocytes, that’s good right??”
12/22/16 WBC is 11.6; absolute lymphocytes 9.85. My doctor did message me electronically on MyHealth - my wbc is high for unclear reasons, had I been ill? If yes, get better and then come in and retest. I ignored this, thank goodness. I say thank goodness because for the last several months my husband and I had been under enormous stress - our younger son had tried to kill himself in July. He had been hospitalized two times, been sent to the ER for observation 3 other times (twice by his school). We had been busy attending parent groups and getting him to depressed teen groups, therapy sessions, etc. By Dec 2016 I could barely function. To hear I had a high WBC when I mostly felt fine?? WTF? Didn’t care. I said that’s nice - STRESS caused, must be - and ignored it. So thank goodness because a diagnosis of T-PLL on top of that time period, well, I don’t honestly know how I would have reacted/coped. I shake my head at myself now because usually I would have been googling like mad; well, I did but I found, for once, the best reason for the elevated WBC and went with it. I was just very lucky that this wicked leukemia didn’t explode on me.
12/19/17 was the day normal ended for me though I didn’t know it. Everyone has these moments. The before and after. The before the miscarriage and after. The before the birth of this kid vs that kid and after, the before my dad died and after, etc. I now add before cancer and after, hopefully there will be an after after. Anyway, WBC now 16.1. Absolute lymphocytes 14.73 and % of those suckers is now 90.4. Not great.
Retest 12/21/17 - WBC 20.1 Absolutes lymphocytes 18.26, % is 90.7. Less great.
Hematology appt now made, I head into freakout mode. Google google google; find Leukemia. Specifically find CLL. Which in my mind fit the best - after all I had probably had this since July 2015 and this was 2 1/2 years later. So Chronic Lymphocytic Leukemia, the “good cancer” I heard sufferers of CLL complaining that their doctors called it this sometimes. I felt their frustration, agreed that this was a HORRIBLE thing to say to a patient. Now sitting on the other side with T-PLL I would literally tell each and every one to Shut The Fuck Up. Yes, no cancer is good but honestly, truly, there is bad and worse and way worse and you’re fucked worse. I would take CLL. I would pay a lot of money if I could now actually have CLL.
So while coping with my self diagnosed CLL over Christmas break and trying to come to terms with it I asked for another blood draw (because my hematology appt wasn’t scheduled until Jan 30 and I was panicking) - 1/3/18 - WBC 21.1 and platelets now lower than normal for the first time ever: 125. Lymphocytes 18.78 (absolute), % 89. I freak out - OMG my “watch and wait” period is over, I’m probably going to need TREATMENT soon!! Poor me.
1/10/18 next blood draw - my doctor is now trying to push up my 1/30 hematologist appt as the 125 platelet count concerned her: WBC 23.7, absolute lymphocytes 21.46, % is 90.5, platelets came back up to 153. I relax a bit. I get a phone call that hematology has had a cancellation - 1/18/18 is now the date.
I have come to terms with my CLL and have joined groups, read blogs, found lots of information about treatments, etc. Now start worrying about what could be found when my Flow Cytometry test is done as this will confirm my CLL and let me now what “version” I have - do I have the dreaded ZAP70 the 17p deletion, worry about Richter’s Transformation. I talked to my regular doctor about CLL and she says that she believes this what I have; that she had discussed my numbers with a different hematologist than I would be seeing at Stanford and he thinks the same. Okay. I cry, I stress, I look for long term survivors online and I find many. I see that MD Anderson has “Moon Shot” programs for cancers they believe can be cured in the near future. CLL is one of them. Yay.
1/18/18. I’m ready. Mark and I head to the appointment in separate cars as he had to take our younger son to school first. I have to do the blood draw an hour before. Mark and I argue about my parking at the hospital using valet parking because I didn’t know where to park and I was afraid I would get lost (my sense of direction is truly heinous). I call my friend Amy and bitch about my husband. I have CLL, I’m stressed, I’ll park where I want this first time out. We discuss hand sanitizer and how I’ll be using that stuff again since I now will have a constantly compromised immune system. Blah blah blah. I arrive. I’m freaked out that I’m entering a Cancer Center. Grateful that I have the Good Cancer (though at this point, I’m pissed that my doctor may refer to it out loud and I’m ready for him to try to say that to me, to stand up to all CLL “good cancer” sufferers.). I do my blood work and go and check in for my actual appointment. Mark arrives and we wait together, nervous, but ok; I’ve done my research, just mostly nervous now about what my genetics will say about my type of CLL and that will drive treatment and give me something of a potential prognosis."
That was a far as I got. I will try to add more later, maybe in a second post as this one is quite long. It's hard to read because all I want to go back to is those few weeks when I thought I had CLL. I managed to find real hope within that scary diagnosis. I could still act and think normal. I didn't cry every single day. I was ready to battle. On this day, today, not so much.
Ok, well here goes the first post. I'll try to keep them coming.
That was a far as I got. I will try to add more later, maybe in a second post as this one is quite long. It's hard to read because all I want to go back to is those few weeks when I thought I had CLL. I managed to find real hope within that scary diagnosis. I could still act and think normal. I didn't cry every single day. I was ready to battle. On this day, today, not so much.
Ok, well here goes the first post. I'll try to keep them coming.
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