Oops, I did it again...

Ah yes, Britney Spears and her chart topping hit. I admit, I have the CD. It was a weak moment in Walmart back in my college days. Don’t judge me. I mean, its not like I still have it. Ok ok, its not like I still listen to it. Honest. Don’t even know where it is. Why on earth would I bring up such an abomination of popular music? Well, because I “did it again”. I ended up in emergency surgery again because my girlie parts hate me. Here’s how it went....

It was a nice Monday morning this past week and I was at my follow up gynecologist exam at Loyola. It was the follow up from the hot mess from February, the first time my body nearly bled to death. So the first person that walks in is the nurse. She asks why I am there. I explain its a follow up. She says its an annual. No, follow up. She insists its an annual. I kindly tell her she is incorrect and can we please just have the doctor come in. Girls, you know the next part...strip down and assume the most uncomfortable position known to women...the gyn exam pose. So here I am, waiting with a sheet over myself, when this kid (yes, I swear he was in middle school) walks in with his stylin hair do pulled back in some man bun and his ear lobe expanders. He says, wait no, he stutters, “I’m a med student and here to evaluate you before the Dr comes in”. Oh good grief. I almost laughed out loud. I’m pretty sure his palms were sweaty and his voice cracked. I said “go ahead, after three births, I’ve lost all modesty”. He cleared his throat and said “Oh no! I’m just listening to your heart and lungs”. It was the fasted evaluation in the history of Loyola. Pretty sure he didn’t even hear my heart because his was thumping so loud in his head. Poor kid. I found out later that it was his first day in gyn rotation and his first year as a med student.

Then the Dr comes in and we rehash the debacle from February. Yeah yeah, vaginal adheadions, blood, ER, surgery, etc etc. Next thing I know, she is OPENING more adhesions. Holy hot cross buns Batman! That’s not comfortable at all!! Clearly she’s never given birth or had anything unpleasant in her nether region. I spare you more details. Let’s just sum it up with the notion that I’d rather have had a root canal done by a blind raccoon. So the exam is nearly done and she declares that I do not need any follow up appointment, I’m cleared for all “activity” and I may have a “bit of spotting”. She hands me two sanitary napkins and leaves the room.

So I dress and immediately realize that this is NOT spotting. It’s vaginal armegeoddon. Again. It’s not as bad As it was in February so I carry on and thankfully have the good sense not to get in my car and drive the hour and a half drive home. I went downstairs to visit Susan. She is another AML survivor who is about a month post transplant and we’ve been texting and emailing through her experience. I finally was able to meet her! After excusing myself to run to the bathroom, I realized this wasn’t going to end well. Went through both pads and it had been about 20 min. So I went back up to my dr office and explained that I needed to see a nurse or doctor. The nurse kindly hands me a little brown bag with three more pads and whispers “do you need the washroom”. Uh yeah, I need the washroom and the exam room and probably another trip to the OR lady.

So the doctor comes in and exclaims “oh my! This isn’t normal at all”. Uh, ya think? Now, its about an hour before I was supposed to be home to relieve my in laws from the grip of my 4 year old. I had NO SIGNAL on my phone. Nothing. Thankfully I had WIFI. While the dr is packing my “you know what” with rolls of gauze, I’m emailing my husband at work. He doesn’t respond. Finally I FaceTimed my mom. “Hi mom. I’m bleeding to death again. No worries, I’m at the hospital”. (Eye roll). She then contacted mY inlaws who got ahold of Dan and by then everyone that needed to know knew. Know knew? That sounds incorrect. Oh well.

The lovely Dr brings in a Foley catheter. Oh heck no. Don’t you use that on me. That’s like medieval torture. She explained that I won’t be able to urinate with the gauze packing. I told her I would be ok. She said she’d be back in 15 min to see if I’d stopped bleeding. She returned 15 min later, removed gauze and of course I had not stopped. We repeated this 4 times. By 4th time, I had to pee. Naturally. So I asked if I could try and she said “you can, but it won’t work”. Ha! Challenge accepted! I win! I not only could pee but I could empty my bowels as well. Too much info? Little late to be whining about that now isn’t it? You could’ve stopped reading much earlier. Anyways....

So off to the OR we head. Guess who was my transport? Man bun boy. It was a long awkward walk through the tunnel from the Cancer Center to the hospital admissions. So there I was, repeating my February surgery but this time at Loyola. Got to stay over night and was sent home on some decent pain meds. Spent the majority of the week in an anesthesia induced brain fog. But wait there’s more!!! Thursday I had to do my monthly phlebotomy! Apparently bleeding out twice in less than 3 months doesn’t lower your ferritin levels enough. I’m still over 1700 (Dr wants me below 500). So I lost another pint on Thursday. Took a nice long 3 hour nap Thurs afternoon.

Yep, its been that kind of week. Now, on the positive side....I spent some wonderful quality time with a new friend. She even bravely accompanied me to pick out a new wig or two. More on that when I make a decision on what I’m getting. God is good. I was in and out of the hospital in less than 24 hours. My mom was able to leave work to be with me. My inlaws were in town to take care of my kids. Yes, it was a rough week but life goes on and next week will bring better times. And less blood. Right?

Life In the Fast Lane

I have not posted in almost 2 months. It’s a good thing because that means that nothing major has happened health wise. It has been a busy two months and I’m grateful that I am here to experience it all. After a women’s retreat at church, I’ve made new friends and joined a bible study. My oldest started soccer season and my younger two are ready to start Tball soon. I’m knee deep in Disney details as we finalize our FastPasses for our summer trip. In general, life is pretty great.

My two year anniversary of my transplant is coming up on APril 19. Not a huge deal but still a personal milestone. The big anniversaries are 1,3, and 5 years. The 1 year means you’ve survived the transplant process. 3 year means your chance of relapse drops dramatically and you are “out of the woods”. 5 year means you are basically “cured” or as close as you’ll get. Yet, this 2 year anniversary is a big deal to me because last year, or the year before, I certainly was not living life in the “fast lane”. I was hobbling along trying to keep up with life and often not succeeding due to medical problems. For the first time in years, I feel mostly normal.

Many issues still arise from the transplant process. For example, I’m currently dealing with my face breaking out like a teenager’s, my nails are extremely thin and brittle and my skin is extra dry. I’ve gained 12 pounds and am often cold. Sounds like thyroid right? Well, it could be. Still waiting to get more tests done. It could also be GVHD or menopause. I’m hoping for thyroid because that’s treatable. I also have severe vision and eye problems. Ok ok...maybe not severe. But I have these new sclera contacts that feel good when I wear them but they fog up and get cloudy which means I can’t see well sometimes and usually without notice. Without the contacts, it hurts every time I blink. So its not a perfect situation by any means but my eye specialists are working on it. There are options.

The thing is, before all of this leukemia happened, my world would’ve been falling apart if I thought I had a thyroid issue or my eyes weren’t seeing crystal clear. These days, I’m so happy just to be here that a thyroid issue or repeated trips to the eye doctor to find the best contact options are not a big deal. Well, ok, some days they are a big deal. It’s never just a quick trip to the doctor. It’s a day long adventure which requires a babysitter, at least 3 hours in the car driving to and from Loyola and another medical bill. But it’s not a hospital stay and it’s not a bone marrow biopsy. It’s just an inconvenience. Let’s be honest, I get annoyed and irritated that I have to be so high maintenance. Gone are the days of getting up and throwing on some clothes to run errands. Now its get up, take a whole lot of meds, pre-soak my contacts, get dressed, put contacts in, put a lot of stuff on my face, apply sunscreen, then makeup and wig. Then I may be able to leave the house but sometimes the contacts aren’t clear and I need to start that process over or sometimes my face is burning and I need to put take off makeup and start over with a different lotion under the makeup. Some days my joints ache because of GVHD and/or excessive dryness in my body. There are days when my energy level is so low that I need a LOT of coffee to get through the 8 hours until my husband returns home and helps with the kids. It’s a crap shoot each morning. Most days I’m just fine, but some days I just seem fine to the untrained eye. I’m excellent at “looking normal”. That’s the whole point of the wig and make up and contacts isn’t it? Don’t we all attempt to “look normal” when we leave the house? I mean, there’s always the ones who totally miss the mark...the ones who end up on the “People of Walmart” slideshows. But generally speaking, that’s what we girls all do...comb our hair, put on some make up and go. Even the guys make sure they don’t look homeless before they go out. I do the same thing, just with a lot more steps.
And when its all said and done, the contacts usually irritate my eyes by mid afternoon and come out. My wig starts to itch by evening and I’m back in a head scarf and my makeup has stopped hiding the acne and my skin is flakey again.

It sounds like I’m complaining. I guess I am. But nobody has a perfect life. Everyone has their struggles. I’m fortunate that my struggles at this time are not a big deal. Going to my son’s soccer game today was exhilarating because it was ordinary. I couldn’t have gone two years ago. Even one year ago, I may not have been up to it. Yesterday I hosted a Bible study. That required cleaning, baking, and inviting 9 women and three children into my home. None of that would’ve been possible 18 months ago. I didn’t have the energy to clean and bake and that many people coming over would’ve been too many germs. My immune system couldn’t have handled it. But this year, I can do those things! My perspective is so different. Yes, it hurts when I blink without my contacts in but at least I’m here to see my children...even though its blurry sometimes. Yes my skin is extremely sensitive but I’m here to feel the breeze on my face and the sunshine as I walk my boys to the bus each morning. Yes I’ve gained weight and am dangerously close to having to jump up a pants size (which I refuse to do so I best workout today!), but that means that my appetite has improved from a year ago when I hardly ate anything because I coudln’t taste anything.

So here I am. 12 days away from my 2 year transplant anniversary squinting to see the iPad screen because its a bad eye day and huddled up by the fireplace because my body is either freezing or very hot and doesn’t regulate well and today is a cold day and yet I’m so very happy to be in the same room as my boys as they watch a movie. And yes, that was a run on sentence. And this is a fragment. Nobody said I was a good writer.