It Still Stings

This has been on my heart for a while and it's time to get it off.

If you've read my blog for any amount of time you'll know three things about me: I'm a fitness nerd, We had a difficult time getting/staying pregnant, and I had an Autoimmune Disease for just under a year.  The last one was a bit intesnse but I feel like it really shaped me, taught me some things and I'm blessed beyond measure that it went away (after I was told it was a chronic and lifelong issue).

My baby toddler is a miracle, an absolute miracle....it's a miracle I got pregnant, stayed pregnant, delivered him safely into this world without a c-section.  He's healthy, easily the happiest person I know and just an absolute joy, even when teething.  During the 11 months I dealt with my ITP V and I came to the forced conclusion that it was best I don't have more babies.  It hurt, a lot.  I felt like the decision was taken from me (even though we weren't sure we'd try for more children before my diagnosis).  Eventually, aka about two weeks before I was told I was in remission, I came to terms with it, I even felt at peace with it.  Then on Aug  20th, nearly 11 months to the day after I was diagnosed I received news I never expected; I was in remission.  My heart lept and one of the first questions was "Do you think, if I am able to get pregnant again, that it will trigger my ITP to come back?"  Unfortunately the answer was "yes, although we have no way of knowing until it happens."  As you can imagine V wants me to stick around, Liam too.  V is not open to me getting pregnant and playing "Russian Pregnancy Roulette" as he calls it.  Who can blame him, I mean I don't want to leave him or Liam....nor risk loosing a pregnancy/baby....or my life.

But...I yearn for another child....truth be told another pregnancy.  I haven't morned the fact that I'll never feel the little flutters of a baby in my belly, never see my stomach grow and grow with life inside again.  I tear up at the sight of a beautiful pregnant woman.  And yes I get jealous of pregnant friends just as I did when we were struggling to get pregnant with Liam.  Recently someone gave back some of my maternity clothes, she didn't remember that I told her we would be unable to have more babies.  Gosh did that hurt.  There in my hands were these clothes, items I invested in with hopes of at least one more pregnancy....clothes I lovingly wore as I joyfully carried my Liam.

I know what you're thinking: Then adopt!  Or foster!  Both of those things are potential options in the future but neither of them replace the longing I have, nor will they ever.  If you don't understand that is fine, you probably didn't have to try to get pregnant or maybe you never feared you'd loose your pregnancy/baby.  Thank God for that for you, it's ok you don't understand.  I don't know how much time will have to pass before my soul finds true rest with this....maybe it never will but I know it's the right decision.  Like I've said before if I could have just one thing for sure it would be more time with those I love.  I won't risk loosing all the time I could have for the chance of another pregnancy/baby.

I guess my point is it still stings, I wonder if the day will ever come when it doesn't anymore.

I'm in Remission...

Monday morning I had another scheduled appt with Dr T (Hematologist Extraordinaire).  The day felt different from the very beginning.  For one thing I've been very sick the last week and half.  I ended up with walking pneumonia and pink eye. Fun (not).  Needless to say I was too tired to get up extra early to prepare, I slept until the last possible moment then got up and got ready as quickly as possible.  I dropped Liam off and headed to the hospital.

At the hospital I got my labs done in record time, not even enough time to worry about what I anticipated to be a rough appt.  I didn't have time to think about how I'd been in the emergency room a week before (long story, I was so sick I started throwing up and got very dehydrated) and was already told my numbers were below where Dr T wants them.  I checked in at the Cancer Center where Dr T's office is and sat with my kindle fire after a friendly chat with the world's nicest receptionist.  Moments after I found seat in the lobby three people checked in behind me, one of whom was frail thin and was trying to hide her hair loss under a cute cap.  I felt a flood of emotions for this woman and a flood of emotions surrounding my condition... what have I been whining about?!  Look at this woman, she is clearly fighting for her life and I whine about a small blood disorder! I felt like the world's biggest jerk.  I couldn't focus enough to read my book.  I was ashamed of all the fear I've had over the last 11 months, totally and completely ashamed.

It wasn't long before I was called back, weighed, had my blood pressure checked and was waiting for Dr T.  This wait took longer than usual.  I sat alone in the exam room attempting to read my new book "Wild".  Time seemed to drag on, but apparently it was with good reason.  When Dr T came in he almost immediately said Your number is 308k!! (Normal is ~150k, I had been at 70k just one week before)  He looked at me, seemingly waiting for me to be jubilant.  My reaction?  Huh. Wait, WHAT!?!? What does that mean?!   Apparently your immune system can go haywire or bounce back very suddenly.  Our discussion was short and sweet while he did a routine exam.  I don't need follow up, people in remission don't need further care, I am no longer considered to have ITP.  He expects my numbers to level out and stay normal.  I just kept saying this is not at all how I expected today to go! My husband is going to have a heart attack!  Dr T walked me out, shook my hand and told me I looked great.  On the way out of the hospital I called V balling to tell him the news, he was as shocked as I was.

Unfortunately I had to head straight to work, I shared the news with my co-workers and boss.  It was neat to see the shock on their faces.  All throughout the day I tried my best to process this.  I took time to thank God and tell him I wasn't ungrateful but surprised, very surprised.  That is the part that makes me saddest.  I never ever expected this to happen.  I never asked for it, my reasoning was that God doesn't always heal people, even when they ask.  I told people that I was thankful to not look sick, or feel sick and I was ok living with for the rest of my life.  It never occured to me that it was even an option for me to get better, but why not?  Why wouldn't God heal me?  I can't explain why I felt this way but I'm sad about it.  In retrospect it really bothers me that I never considered it an option for God to heal me, even when friends and loved ones suggested it as an option I quickly countered with what I thought was "reality".  Ye of little faith.

Being free of this disease changes a lot of things, it opens the door to possibly trying for another baby, someday.  I feel like I have a new lease on life.  I'm so thankful, so very thankful.  All the praise, honor and glory to God!


-Jen

Calmness and Peace {Dr. Appt}

Last week I had my first annual exam with my ob/gyn since having Liam....you remember Dr. Wonderful, yes?  Dr. Wonderful is an amazing doctor.  I know far too many women to dislike, even hate their ob/gyn and it saddens me.  The person who brings your child into this world should be wonderful to you, I wish everyone had a doctor like mine.

I sorta looked forward to my check up.  Crazy huh?  Compared to my visits with Dr. T (Hematologist extraordinaire) an annual is a walk in the park!  Plus I'm nearly 15lbs below my pre-pregnancy weight, I've managed to maintain this weight for around 6 months and I'm darn proud of myself for it.  Also I love Dr. Wonderful's staff, they are equally as wonderful!  I walked in and the receptionist immediately says to me "You cut your hair!"  I was shocked that she even remembered me let alone my hairstyle after a year.  Love.

After confirming all my info and signing in I sat with my kindle fire hoping to read a bit of my newest book (Wild by Cheryl Strayed) before being called back.  Two clearly pregnant women were called back and shortly after so was I by my favorite nurse.  Happiness.  Nurse D and I caught up while I was weighed and had my blood pressure taken, she told me to strip down to nothing but the cape she pulled out and Dr. Wonderful would be right in.  I picked up my kindle after stripping down hoping Dr. Wonderful would have to do a few ultrasounds and I'd get a few pages in.  No such luck one page in and knock-knock.

Perhaps I have a strange bond with Dr. Wonderful but I was glad to see him.  He's older than both V and I, at least old enough to be either of our parents, maybe mid-50s?  He's easy to chat with but gets right down to business.  Boob exam, ugh I hate them but they are a necessary evil.  I brought up my ITP diagnoses and Dr. Wonderful delicately said "Hmm do you have future pregnancies planned?" I twisted my mouth a little and said "no..."  He seemed ok with that answer.  I couldn't help myself "I can't help but notice you didn't argue with me on no more babies, it's for the best isn't it?"  Dr. Wonderful "Well.  It's a bigger decision for you to possibly expand your family.  But it's a tough decision to be taken from you.  You could have more children, we could treat you and manage your ITP but it means more steroids.  I have some articles for you, I'd like you to be educated before you make a final decision.  I like that you are on Mirena, it's a good birth control for you as it prevents periods since you risk heavy bleeding."  The rest of our conversation was about my half marathon and how proud of my Dr. Wonderful is.  He kept saying "You look great!  Your working out, your organized, you're WEIRD!"  I just laughed.

After my exam I dressed and met Dr. Wonderful to get the article he mention and a rx for an inhailer for my asthma.  He again congratulated me on doing so well, told me I looked great and said "Well, see ya next year!"

After I left I could have returned to work for an hour but decided to take that time for myself, well kinda, I wanted to get some stuff cut up for dinner and change into comfy non-work clothes.  I wondered around my silent home picking up things and thinking about my appointment.  I had this wonderful sense of calm and peace.  I was thinking to myself while cutting up ingredients for dinner "If I could have one thing, anything, what would it be?  More time.  More time with Liam and V, with my friends and loved ones.  If I do get pregnant and my ITP goes haywire I truly could die and I would not get more time with anyone.  I would make a choice that would screw up the one thing I want most; more time with those I am already blessed to have.  Yeah, no more babies is the right choice for us.  Hopefully one day it won't sting as much but it's the right thing."  There were no tears which is rare.  In my hearts of hearts I want another child...a sibling for Liam, but more important than that is cherishing what I already have.  I put all the prepped ingredients in a bowl and headed off to pick up my sweet Liam.  I hugged him extra close and thanked God for him with tears in my eyes.  I am beyond blessed just to have him and get to be here to be his mom.

In about a week I have my next appointment with Dr. T (Hematologist extraordinaire), I'm anticipating treatment since I believe my platelet numbers have held the same pattern they have since being diagnosed last September.  Right now I feel good about it, I feel like I know what to expect and I have a lot of pride about accomplishing my first half marathon. 

Much Love,
-Jen

On My Auto Immune Disease...An Update

Yesterday I had another appointment with Dr. T.  Or so I thought... I arrived at the lab a few minutes early for my blood work, there was no order, I walked over to Dr. T's office to get one only to learn my appointment was mysteriously canceled.  I sat around while a couple woman ran around trying to figure it out, we all know by now I get anxious about my appointments...this didn't help but in similar situations I always tell myself "we are all just humans, mistakes happen, as long as it can be resolved then no harm no foul."   Orders in hand I headed to the lab to wait an hour.  Thankfully I managed to be-friend one of the receptionists, she noticed I'd been waiting forever (45 minutes) and went back to tell them I am a oncology patient and need my blood work done now so I could make my appointment.  While I do not have cancer I am seen in the oncology department so I was ok with this and it meant I got in and out.  Back over to Dr. T's waiting room I went.  While I was waiting the practice administrator came out to introduce herself to me, she was so helpful while I was battling insurance, it was so sweet that she wanted to meet me and congratulate me on winning! It was just another few minutes before I was on my way back to an exam room.  As usual I was weighed, I've managed to maintain my weight for the last 4 months, I'm currently 14lbs below my per-pregnancy weight! Thank you My Fitness Pal! (it's free, sign up, message me and we can buddy up!)

Before I knew it Dr T came in.  I'm so thankful I get to stay in his care, even though my appointment was mysteriously canceled he took his time to talk to me about different things...like the fact that about 50% of the time when ITP is discovered and there is another associated disease existing and my fears.  I was so freakishly nervous.  Since 6 months have passed Dr T. is no longer concerned about associated diseases, he thinks I just have a idiopathic chronic case of ITP that will be intermittent for the rest of my life.  This is good news, the other associated diseases are scary....so scary (message me if you have specific questions, I'd be happy to discuss those).  He even said "I don't want to cause you to worry more by telling you this"... I reassured him I prefer the education....I'll worry anyway.  He also said I really shouldn't worry about having more children, that if I do get pregnant and my ITP worsens during my pregnancy I can do the IV treatments (this is an 8 hour treatment, in the hospital! Yikes!). I would be unable to do steroids while pregnant.  I'm still petrified of having another child.  He reassured me that he doesn't think I will ever have normal platelet numbers but I don't need them to be normal to be ok (normal is over 150k), as long as I can stay around or above 80k I can live a normal life full of the activities I love.  My numbers weren't available so I headed back to work (two hours late) and he said he'd call me.

I went to a movie with my dearest friend E. at 7pm thinking I wouldn't hear from Dr T until the next day.  Nope, I missed his call twice around 8pm.  He called me again at 9pm and again took time to talk to me.  He mentioned that I was more nervous than ever before.  He again took time to talk to me about how "this is not a death sentence, it's just annoying....you are doing very well and I expect your recurrences to be spread out over years not months".  My platelet numbers have continued to lower about 20% to 90k.  He reminded me of what to watch for and reminded me I don't need an appointment to have my blood checked, to just call him and I could go over on my lunch and be checked, he would call me.  I'm just so thankful for him, he gets me....he doesn't just brush off that "I over think this whole thing" (my words).  I have another appointment in August. (Side note, I'm no longer anemic! Yay!  I still have to stay on Iron for 3 month but that is fine.)

So it is good news, I'll probably need treatment again in the fall.  It will probably be steroids...while the side effects are rough...I prefer them because the thought of the IV treatment terrifies me (did I mention they are $10k a pop?).

I know I say it all too often but I'm really going to work on looking at the big picture and stop worrying about the little stuff.  I can't plan and control everything, or really much at all.  At the end of the day I still have a pretty great life, sure a few things could be different and better but over all I'm pretty darn blessed.


Other related posts:
My Diagnosis with ITP
What is ITP?

Much Love,
Jen

Sanity {Temporarily} Restored

My battle with insurance has not ended, although I can see the end of the road.  Unless something unforeseen happens I will have no choice but to switch doctors, I can not tell you the anxiety this has caused me.  I don't think many people around me understand this stress but I don't expect them too.  I don't expect many people to understand what I'm going through, frankly we are too young for this whole thing.  No one expects this to happen to them, I have no control over it but I have laid it down in my heart, I'm finding peace with what I can, making choices where I can and choosing to accept the outcomes as God's plan.  I'm choosing to accept that I'll have to change doctors, that this new doctor will be the one to treat me when/if my ITP worsens, she will treat it when/if we have more children (the thought of dealing with chronic ITP and a pregnancy let alone delivery terrifies me).  I'm choosing to be joyful that, while I do have a disease that likely will be for the rest of my life and will cause complications, I am not in pain....some days I can even pretend I don't have ITP even if it's for a short bit because I don't have constant/obvious reminders.  I choose to be joyful about this.  I'm finding the most joy in the fact that this is not hereditary, the likelihood that Liam will get it is no greater than anyone of you getting it, joy.  And after all Jer 29:11 say that God has "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."  There is joy in the fact that God himself has plans for my future.

I'm also allowing myself more time doing the things that reduce my stress and therefore restore my sanity even if it's only temporary.  Things like organizing, cooking and working out help me feel some sense of calm, control and peace in the midst of this whole crazy thing.  For the most part I can still control the overall health of my body (with healthy meals, working out) and having a tidy and organized home reduces my stress level in general.  V has been really great, he's taking things one day at a time too and helping out each day....I can't tell you how much this means to me.  Monday I went to the gym after work and did 5 miles (jogging), I did not stare at the clock or convince myself to leave early due to mommy-guilt.  I just worked out until I felt done then went home and made a quick but yummy and healthy dinner for us, played with Liam until his bedtime (V and I take turns putting him down and it was V's night).  I took a long hot shower after Liam went to bed and enjoyed some cuddle time with V (because he had cleaned up while I showered).  My soul felt great rest and restoration.

I can't promise I'll always feel so calm and restored but I've decided to allow myself to feel what I need to during this process, no matter how long the process ends up being.  I'm done worrying about what others will think, done trying to please others and listening to the noise that some people put out.  I will focus my energy on doing what is best for me and my family and I will enjoy every happy moment I can with no regrets.  I'm allowed to be scared, allowed to worry, allowed to make the choices that are best for me and my family. 

Much Love,
Jen

Dr Appt Update (Auto Immune Disease Related)

Hey Peeps,
If you are my "in real life" friend let's keep the following between you and I for now, -k-
Much Love, Jen


Wow just writing that title is a bit draining.  I keep hoping and praying this whole thing will come to a close and be done or that I'll get some definitive answers about what my future looks like but alas I have not and it looks like I won't be any time soon, as is the nature of my...disease. (I'm coming to the realization that I have to start calling it that, I have a disease...)

Yesterday  Monday I had a check up with Dr. T (Hematologist Extraordinaire).  It had been two months since I'd seen him.  Two glorious months with out those damn darn steroids pulsing through me.  Two months of pretending life was hunky dory.  I really didn't think about my ITP much until a few days before my appointment, I started to get really anxious....unfortunately when this happens I tend to close off, I don't confide in people, I internalize.  It's just how I deal, more on that later.

Monday morning finally rolled around, I got up a little extra early to have some quiet with my thoughts and coffee.  I took my time showering, dressing and doing my hair/makeup.  That always makes me feel a little better, heaven knows why, but it does.  Then the morning went about it's usual routine: Liam happily rises requesting a clean diapie, a morning bottle, snuggles etc.  Before I knew it I was dropping him off with Nanna and heading back into town.  I treated myself to a Carmel latte with whip cream and headed to the hospital.  I had around an hour before my appointment so I carried along a magazine, my ipod touch and my cell phone (dead battery and all, of all the days I could have used the distraction of a text my charger was at work, oy). 

My blood draw was the least painful I've had yet, thank God for that!  I also think it helps that my poor arm has had time to rest and heal.  I was in and out of the lab in record time so I just headed over to the oncology office.  Upon signing in, with the receptionist who still remembers me by name (how awesome is she?) I was informed that my shiny new insurance is wonky crap....great, as if I wasn't anxious enough.  Then I over hear (because I was standing literally in front of the woman) that they have over booked my dr during my time, I should have said "I'm really sorry but I need to be on time so I can get to work." but didn't.  Thus I would end up waiting an hour to see my doctor.  Fun times.

After, what seemed like forever, I finally got to see Dr. T.  My numbers are again lower....looks like my ITP is likely chronic.  I had suspected and feared this for some time and now here it was staring me in the face. I swallowed hard and glanced to the side, as I always do when I don't want to discuss something.  I don't have to go back on the steroids yet but Dr T is predicting my ITP is here to stay.  Also I've lost five more pounds, I'm twelve pounds below my pre-pregnancy weight.  Dr. T wasn't concerned but clearly thought enough to bring it up in conversation.  *side note I'm not trying to loose weight, I need to start toning but cardio=therapy for me*  He also told me that my hemoglobin (red blood cells) are looking much healthier (after four months of taking 300% of the daily requirement of iron each day, yuck) but I'm to stay on the iron for at least 8 more months.  I can handle that.  Up on to the exam table for the physical.  Dr. T makes small talk, he's such a nice guy, it makes it so much easier to face these appointments.  We discuss the mass of snow we got and how both of us got stuck, luckily he has teenagers that could dig him out!  He tells me that even if my ITP is chronic that it's not unreasonable to want or try to have more children, this is reassuring to me.  In passing I mention I've been having shooting pains in my right breast, I figured it was just my hormones and he'd pass it off as I had....nope....he's concerned.  Eff.  I'm handed a "gown" for lack of a better word and asked to undress from the waist up, full breast exam to come.  Eff.  I hate these more than anything on the planet but if he's concerned I guess it's necessary.  He comes back in and checks my poor floppy breasts and arm pits for lumps and bumps.  Nothing. (I also had found nothing in my own self exams).  This is something more to keep an eye on.  He wants to see me back in 3 months.  Should I find any lumps/bumps have specific bruising or become concerned I'm to call and have blood work done.

I'm saddened that the time between my visits isn't extending more, from this I gather that he doesn't think my platelet numbers will stabilize but will continue to decrease, that in three months it will be important for me to be monitored.  My road with ITP will not be short, likely not easy.  I'm afraid, fearful of the next treatment options (they are $10,000/each), fearful of needing surgery.  I'm concerned about what my future looks like, if Liam will ever know a healthy mom.  Sure I can function right now, but will I always be able to? And to what capacity?

Adding to my worries and fears is the mess that has revealed it's self with my insurance.  Dr. T is listed as in network on my insurance's website BUT when he's office goes to bill them the insurance will only pay him as out of network.  After some investigation I've learned it's a mess with his tax id numbers (he can work out of either hospital in my town but works out of only one, while both hospitals are in network only the office at the other hospital is considered in network on my insurance).  The short end of it is that I may very well have to switch doctors.  No one would want to do this, you build a relationship with these doctors, when you find someone you trust and that is doing a great job...you don't want to just up and leave.  It's not looking good, I've fought hard, I've done all I can do...I've spoke to Dr. T's office and my insurance twice yesterday alone. I've made pleas and calls to my Human Resource person (a lot of good that's done me, sarcasm intended).  It's in God's hands but right now I'm so very worried.

Not only the stress the insurance mess but the overall stress of having this...disease...is getting to me.  I'm starting to worry about missing out on things I love, like hiking.  I was thinking the Saturday night about how excited I am to hike again, since I couldn't last summer....then I started to worry...what if my platelet numbers are really low again and I don't know it, and I fall and get hurt in the woods.....what if....  It wasn't pretty.  Please don't tell me not to go there, it's where my brain goes, and to some extent I do have to think about these things, I have to be realistic about what my future looks like.  I'm starting to see the weight of this on me, I need an outside person, a therapist to talk through all of this with.  I need someone who doesn't know me personally and it's emotionally attached, I need someone who won't just say "it's all going to be ok, don't worry."  Because I need more than hearing "don't worry"...I need someone to understand that I'm scared and help me walk through this.....I looked up the number for the free counseling my work offers.  I need to verify how much I can get at no cost because I'm sure it's not a lot and I will need more than the allotted amount.  Just one more thing I have to figure out how to navigate.

So, it may not be pretty but that is where I'm at right now.  V's been pretty great and thank God.  He's allowed me to get away to the gym more than usual, the other night he took care of Liam so I could get dinner with one of my incredible friends and tonight he's treating me to highlights.  He's been fairly understanding, as understanding as a guy can get....ya know they usually want to fix stuff, this can't be fixed....I just need to be heard and cry an ugly cry and he's allowed me that too.  V and I are far from perfect but he's pretty darn good to me, I need to be more thankful for what I've got because I have more than a lot of people.....

Dr Update 11.14.11

Quick notes from my most recent Dr appt.

• My platelet numbers are lower but still acceptable.
• I'm no longer Anemic but my red blood cells are still far too small so I have to stay on Iron pills for at least a year.
• I'm officially off my steroids.  Dr T warned me that I'll likely feel horrible transitioning to being completely off of them because my body is so used to having them now. (I'm allowed to take a 1/4 of a pill if I need to but I've already decided not to).
• More blood work in two weeks to check levels and see how my body is handling life without steriods. 
• Dr T says I'm doing "remarkably well" and that ITP is typically a "nasty disease".
• Apparently it's not typical to step down on the steroids so quickly, usually it's months of going up and down in dosages before either being able to get off them or having to use an alternative treatment. (including but not limited to surgery to remove the spleen)
• I've lost 2 lbs since my last appt which makes me officially 147.5lbs. {at goal weight}
• We are still facing months (if not a year+) of monitoring before we know if this is chronic.

I'm not even sure how I feel, if I feel hopeful or not.  I was so nervous about yesterday's appt but now I'm almost more nervous about the next one.  I guess I'm not sure I'll ever not be nervous about them.

Mix Together Equal Parts: Exciting & Scary

Halloween brought the latest appointment with Dr T (yes, yes hematologist extraordinaire). I've noticed I get anxious about my appointments the night before, I dread being poked...it's gotten really old.  It probably seems silly but knowing I have to deal with this most Mondays is hard to handle sometimes.

We went about our usual morning routine at home and after dropping Liam off it was to the hospital for labs and my appointment.  I rather enjoyed the distraction of several staff members being dressed up, it's not everyday that Raggedy Ann draws your blood! The staff in the Cancer Specialists office were all Disney villains!  So fun!  I was weighed in (only lost one pound in 2 weeks, boo!) and headed back to the exam room to wait for Dr T who arrived quickly and with good news, my numbers are still stable!  I can move to half a pill every-other-day!  Woah!  He wants to see me in two weeks and if my numbers remain stable I can stop taking the pills all together!  Woah!  The thing I most appreciate about Dr T is that he anticipates what I'll ask him, so he covered somethings I was thinking about such as the likelihood my ITP will come back (1 in 3 chance) and what my options are should it appear to be chronic (scary), future monitoring over the next month/years and so on.  I'm excited that there is a plan and that we are finally looking forward more long term but....

I wish I could tell you I felt all this reassurance and was worry free walking out of my latest appointment but I didn't.  Thankfully I had to head straight to work so I couldn't dwell on it immediately but my mind found plenty of time to consider what my next lab results could mean.  To sum it up quickly: I'm scared.  I do not want to live with this.  I don't want to wonder if or when it will come back, I don't want to over-analyze every bruise and bloody-nose.  I don't want to have quarterly/bi-annual/annual monitoring.  I want this to be over, simply over.  Too bad we seldom get what we want in life huh?  The cold hard truth is I have no control over this, chances are it will come back or is chronic and I will have to think about it long term.

This last steroid dose change has been really difficult on me physically too, I can tell when I don't have that stuff pulsing through me, suppressing my immune system, because I feel terrible on the days I do take it.  I haven't had anymore bruising, which is nice, but I got a bloody-nose the other night and it hit both V and I to our cores.  For one thing this was no ordinary bloody-nose, blood poured and proud from me, I could hear the fear in V's voice as he asked from the other room if I was ok.  He wasn't really asking if I was just ok, I could hear the meaning behind his words; Is this more than a bloody-nose?  Should we call Dr T?  Are you as worried as I am?  I can't tell you how thankful I was when the bleeding did finally slow and eventually stop.  (It didn't bleed long enough to warrant a call to Dr T).  I really don't want to go through that again.

And that is where I will leave it, not exactly ending on a high note but I will not continue with this pity party of one.  You have to play the hand you are dealt, whining about it will do me no good.  The biggest realization that has come of all this is what a miracle baby Liam really is, I believe in miracles more than ever as a result of all of this.

Pull your head out of....the sand.

I should have updated earlier but alas Liam got a cold and the whole week got away from me. 

After a reality check from a dear friend I pulled my head out of....the sand....and called Dr T.  Long story short he was glad to be updated but because of the size and location he said it would be fine to wait until my next appt (10/31) to have my numbers checked.  Whew.  What in the world was I thinking?  Why must I be so stubborn.  Have I already forgotten that my first numbers were life-threateningly low?  Eff self, eff.  No matter how scary I have a responsibility first to Liam and secondly to others who love me to manage this no matter how frightening it is.  I was being so selfish.  Jen you are not an Ostrich, keep your head out of the sand.

a whisper

I need to whisper something to someone but there is no one I want to tell.  I don't want to tell my loved ones and a stranger might think I'm nuts.  I want to whisper it because I'm worried.  I want to whisper I'm bruising again....like I was before and I can't explain them...I'm worried, it's not just one or two but several bruises....  I carefully considered who would reply how and what I really need to hear right now and came up empty-handed.  I don't want to hear "it's ok, nothing to worry about." nor to I want to hear "call Dr T, get your numbers checked now."  no response will do.  I'm not going to call Dr T early (my next appt is one week from today) yet I don't want to hear it's nothing either.  I know I probably sound like a brat, maybe I am but this is how I'm choosing to deal with the situation.  I stand, almost frozen, I don't know what to do.  If my numbers are low I'll either have to re-up my daily dose of steroids or consider the next [very scary] treatment option.  I fear my treatment road is only extending instead of drawing to a close like I had my heart set.  I fear it means I really am chronically ill and will have to deal with this whole thing for much longer, that this whole crazy situation is not drawing to a close.  I'm trying hard to keep my hopes high, knowing I could be wrong but the reality of it all is hard to ignore right now. 

I've always prided myself on being able to cling to hope no matter what, today I'm barely hanging on by my finger-nails.  It's just one of those "what it rains, it pours" kind of days.

Just a vent post. 
Thanks for reading-

Another Dr Appt Update

Welp another Monday has come and gone and thus another trip for blood work and a visit with Dr T (hematologist extraordinaire!) has also come and gone.  This week I sorta had a bad attitude about my blood work, I'm so tired of being poked every.single.Monday.  I picked up a Carmel Latte on the way to the hospital but it really didn't make me feel a ton better, I just didn't want to get stabbed again.  It didn't help that the check-in woman recognizes me and I've been in so many times I simply smile and recite all my necessary information for her without being asked.

After having my blood taken I wondered over to the Cancer Specialists office where Dr T's office is, checked in and waited.  He must have been tied up at the hospital because he was running late (which also meant I was going to be late for work, I've only submitted one hour paid time off).  I was weighed like usual, I'm down another two pounds which is nice and headed back to exam room to wait.  Thankfully Dr T came in with good news again, my platelet numbers are steady!  Last week he said he wouldn't be lowering my steroid dose but this week he told me to take one full pill on even days and a half pill on the odd days!  He also pointed out that I'm very anemic, guess I don't do anything half-assed! LOL!  He wants me on two Iron pills/day for at least a year.  Gr-eat.  Then he said he wanted to see me back next Monday again.  I was so disappointed, I really hoped I'd be able to go at least two weeks in between appointments but I smiled and he did his physical exam (checking for lumps and bumps in my lymph nodes).  Before I knew it he was walking me out.  All in all generally good news and for that I'm grateful.

I have to remind myself to be thankful because it could be so much worse, the other patients Dr T will see have cancer, I do not.  I am responding well to the steroid treatment, I feel great and can barely feel any side-effects of the steroids these days.  But it still stinks, I've had blood work and spend every Monday morning in the Cancer Specialists [of my state] office.  People keep asking me why I don't ask Dr T when I can stop coming in every week and honestly I'm not sure I can handle the answer right now.  What if he says every Monday for a year? Or worse, what if he can't give me an end date?  Even though I am healthy hearing that would make me feel chronically ill, it will scare me and make me sad.  I prefer to take it one week at a time.  Each week I take the good news and pull it in close and try hard to just enjoy the small things each day.  Today I'm healthy, I feel good, I have amazing family and friends and the cutest little boy around.  Today is a good day.

Acceptable

Yesterday morning I dropped Liam off with Nanna and came back home to gather my thoughts before my second appointment with Dr T (hematologist extraordinaire).  Time wasn't moving quickly enough yet I didn't have enough time to reasonably to go to work and make it back to this side of town.  I decided to get gas and show up to the lab extra early. 

I arrived at the hospital and emotions of two years ago when my friend Jamie passed came flooding back, this is my only other association with this hospital and I thought to myself; if I never set foot here again it will be too soon.  I rode the elevator with the friendliest of old men to the second floor that holds the lab and oncology department, as I arrived at the lab it was all to clear that again I was the youngest person around by a good 30+ years.  So many eyes watched me enter the room, I signed in and quickly found a spot near the back of the waiting room, good thing I came early because the room was full of people waiting...so sad to see, what are all these people here for? What news are they hoping to get or not get?  I was distracted for a time by the women near me who ran through a box of tissue within moments, for the first time I truly feared getting a cold...I could get so sick, Dear Lord please let my numbers be good.  I could literally feel fear trying to settle into my bones and make a home there...thankfully I was called back, poked (hard, it really hurt this time and I bled like crazy which made me scared,  oh no are my numbers really low and now I'm not clotting?!) and after just a few minutes with a small pink band aid hidden under my cardigan I was headed to the Cancer Specialists office that is home to Dr T.  I dread walking in there but at least the staff has to be some of the kindest I've ever encountered in my life, they already know my name, their smiles are kind and warm.

I sat admiring the art again and trying to distract myself once again, this time the waiting room was almost abandoned except for one elderly woman and I.  I messed around with my ipod not allowing thoughts to creep in and forcing tears back trying to ignore the what ifs that kept trying to wiggle their way into my heart.  Finally I was called back, weighed and walked passed Dr T, whose beeper went off right then....I felt scared for the person who had to page him and bummed that it likely meant a long wait for me.  Once in the room I was right; I had all too much time alone in the silence with only fancy diplomas to read.

Thankfully my wait would be worth it, Dr T came in with "acceptable" news,.  I'm already responding well to the medicine (technically steroids) that I've been on for 5 days.  My platelet numbers have gone from dangerously low to "acceptable" and I've been okay'd to lower my daily dose from three pills every day to just two (plus meds to keep my stomach stable).  This news couldn't have come sooner, the side effects were killing me, when Dr T asked if I had been sleeping I started to weep which is my usual response when I'm far too tired.  I caught him off guard which made me feel bad, he offered me sleeping pills which I declined.  I already feel like I'm on hand full daily of pills, I agreed to take Tylenol pm if I started to get desperate.  This time Dr T felt more personable, it may just have been that I was so much less fearful but it was nice.  He gave me a brief physical which mostly consisted of checking my various lymph nodes for lumps and bumps, asking if I have any pain (I do, I'm terribly achy) and discussing the plan moving forward.  Since I've responded quickly he's no longer worried about my bone marrow being sick/weak/infected so we can try one week with one less pill per day, if I can at least maintain my platelet levels I can try going down to just one pill per day.....I don't even want to talk about what if I can't maintain right now, it's big and scary so I'm hoping for the best.  For right now I'm going to hope this is an acute case that could go away with short term treatment.

I walked out of the exam room and scheduled my next appointment and labs feeling a little less weight on my shoulders but praying I would not forget the lessons the last five days have taught me, my priorities have been square in line with what they should have been all along!  I've been making more time for V and Liam, resting more and just not letting the stress of daily life get to me, please Lord let these lessons resonate with me.  In the parking lot I called V, I just wanted to share my causious yet exciting news with him.  V seemed thankful I didn't recieve bad news alone but couldn't talk long as he was already at work.  I shot off a text to two of my dearest friends whom I promised to keep posted and dashed to the office, I may have gotten acceptable news but I desired the distraction of work.

So one more week of trying to rest whenever possible and praying for the best.

Intentionally Untitled

Hmmm well this won't be a ray of sunshine post, sorry.  Right now I have so much bouncing around in my head it's hard to even focus.  I have another appointment with the hematologist today, in two hours actually.  I could have a wide variety of people go with me but I'm choosing to go alone and I'm not sure why.  Perhaps the back of my mind hopes that I just won't need anyone, that I'll get good news...

My medication is not cool.  It makes me feel old...I'm so tired, achy and anxious.  I'm afraid to tell Dr T it makes me anxious, I don't want yet another pill to take right now. I feel like I take a handful every morning as it is.  Doesn't matter if it helps, please God let it be helping.  I found more bruises again this morning, they pop up suddenly in strange places, places you would remember hitting that hard. I feel like I should wear long sleeves and pants 24/7 so no one even sees the light ones that spot most of my body.

Only time will tell I suppose.  The worst part about all this is Dr T can't tell what symptoms are what since I just had a baby.  Rapid weight loss, hair falling out, exhaustion etc it could all go either way (except the bruises and extremely low platelet count).  Sigh.  I just try to keep reminding myself God saw this coming, and he's got it all under control.  It's all going to be just fine because it has to be.