This’ll Be My Year

I am a big fan of Train. Not choo coo trains (that’s my middle boy’s fave) but the band Train. Their lyrics are fun and clean and sometimes make me laugh. One of their songs is “This’ll Be My Year”. The chorus goes “I stopped believing although Journey told me don’t before, I call it a day, maybe this will be my year” Seems to be a good song to start off January with! Now, I am not one to complain (my husband may disagree) but lets be honest. Last few years have not been “my year”.
2014: diagnosed with AML
2015: chemo and radiation, signs of relapse
2016: full blown relapse and stem cell transplant
2017: trying to get side effects under control, my dog dies, becomes clear my hair will never return, start phlebotomy monthly
2018: major side effects (i had my tear ducts cauterized for goodness sake...that was awful), was told I cannot go back to work anytime soon, our cat died in our basement with my boys watching (it was a little funny...but that’s another story)
Yes, I know. Sounds a lot like complaining. You’re right. It is. But this year, 2019, will be my year. It will be cancer free and side effects will improve. No pets will die. I will have all three boys in FULL DAY SCHOOL come fall. Do you have any idea how clean and organized my house will be? How much I will work out each week? How many books I will read and how few games of “baby animals” or “animal doctor” or Clue Jr. i will have to play???? I mean I love LOVE LOVE my children but one can only pretend to be a baby birdie so many times before they loose their mind. So that’s it. I’ve decided this will be my year. I hope it is your year as well.

It’s the Most Wonderful Time of the Year

Well hi there! Remember me? I know, I know, I disappeared from cyberspace for a bit. Ok fine, 8 months. But that must mean that health wise, all is well! For the most part, that is true. I’ve been enjoying life with my boys and husband and friends and family. Here is a quick run down of what I’ve done in those 8 months:

We went to Disney World, visited family in Nashville, TN and Greenville, SC. We spent time at Dan’s parent’s cabin, rode bikes, watched fireworks, sent boys back to school in 3rd, 1st and pre-k. We had one boy playing soccer and two boys paying tball, there was a wedding and birthday parties, family time at the beach, we explored a fort in Florida, we took a trip to a train museum, went to the zoo, became Godparents, two of my boys had surgeries (nothing major just ear tubes and tonsils), enjoyed Halloween, thanksgiving, Christmas and New Years Eve, made new friends and reunited with old friends and in general just thoroughly enjoyed life. Oh, and a lot of laundry. I do so much laundry.

Looking back at these 8 months, it has been awesome. I hope that if you are reading this laying in a hospital bed or getting ready for some major health event like chemo or transplant or open heart surgery or whatever, you can find hope in your future. I was in your place a little over 2 years ago. I wasn’t sure I’d see my home again or hug my children again without a hospital gown between us. And here I am, doing laundry....er, I mean, enjoying life! Has there been snares along the way? Yep. My eyes hurt when I blink more often than not. My skin is dry and itchy. My energy level is not consistent and yet it is consistently lower than it was pre-transplant. My amazing husband has to do more work around the house and my kids get a little less “mom time” than they’d like. But in the grand scheme of things, I’m doing pretty darn good. So please excuse my 8 month abscence and rejoice with me at how I’ve been able to live my life free of leukemia. Praise God from whom all blessings flow...

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.

Sunday, Bloody Sunday

A few decades ago there was a U2 song titled Sunday, Bloody Sunday. It was about a protest in Northern Ireland where a bunch of people were shot. I think. Don’t risk your Jeopardy winnings on my knowledge of the meaning of U2 lyrics. Anyways, I had my very own Bloody Sunday two Sundays ago....

DISCLAIMER (again): if you don’t want to read about my girly parts, then avert your eyes and move along to another post. If vaginas don’t bother you, then carry on.

So it was a typical Sunday...except I had the flus. Yes, flus plural...I had Influenza A and B...again. (Eye roll). But symptoms were mild and I was on Tamiflu. Nevertheless, I didn’t go to church with Dan and the boys. I figured I should follow dr orders to keep my zip locked vagina from closing even more. So I used the dilator that I’d used before and never once had a problem. It’s not nearly as fun as you may imagine. Trust me. I did my 10 minutes of prescribed dilator use and was shocked to see a large amount of blood. Large isn’t the right word. Horrifying amount of blood. I called Dan and thankfully he was on the way home from church. He dropped the boys off at his parents and rushed home. By now I was feeling faint and leaving quite the mess. Looked like someone murdered someone in our bathroom. I called my gynecologist at Loyola (my specialist gyn). She never returned my call, but it may have been the answering services’ fault. Either way, when nobody called me after 30 min, I called my local (and awesome) gynecologist who said she would meet me at the local ER. So off we went. This was not yesterday, but the week prior and NW Indiana was having a minor snowstorm. Whiteout conditions. Dan always wanted to rush me to the hospital when I was pregnant but since all three boys were induced, he never got to. Well, now he was able to...in whiteout conditions none the less! Took us an hour to get there when it should only take 30 min. By that time I had bled through everything and made yet another mess. The ER receptionists said they were sending me to labor and delivery to meet my dr there. Ended up in pediatrics..but whatever. My Dr took one look and said she was getting an Operating Room ready. At that point I had lost enough blood that I was woozy and feeling pretty awful. Blood transfusions was mentioned but since I need special blood (irradiated) because of the transplant, there was a brief panic as everyone realized that the blood bank didn’t have this blood and it had to come from Fort Wayne. In a snow storm. 3 hours at least. My dr called the transplant department at Loyola and got the head of the department who wanted me to “just come to Loyola”. Clearly he didn’t understand that I was bleeding to death. Only halfway joking. He apparently also hadn’t noticed the snowstorm. (Eye roll again). So my very amazing dr said “no way, she cannot get there, you have to tell me what to do with her blood transfusion if needed”. After many more phone calls and a lot of head scratching, the blood blank realized that they DID have irradiated blood on hand for newborns. So I was saved! On to surgery. My gyn cauterized the artery that had ruptured when a vaginal adhesion tore from the use of the dilator. I was never in pain and had no idea anything tore. I never needed the blood transfusion. Spent one night in hospital and was sent home with low hemoglobin and a headache. Now, a week later, I’m feeling close to normal. I have a follow up with my dr in a week to figure out “now what”. The fun never ends!

Jagged Little Pill

Remember Alanis Morissette from back in the 90’s? She had a hit album titled Jagged Little Pill. Although she was a successful and popular artist, she was angry and bitter with her lyrics...a favorite of the women of the 90’s dealing with teenage angst or just looking for a song to blow off some steam. My 15 year old self sang along to the CD, on repeat at times, knowing every word but not really understanding the meaning. I had bigger things to deal with like homework, a busy schedule, friends, work and a boyfriend. I had no real reason to be angry or bitter but I liked the music.

Fast forward 22 (oh my...really?) years and my understanding of Jagged Little Pill has changed. Now, don’t get me wrong. I have a fantastic life. My husband is truly the best out there. My children are amazing. Our home is beautiful and holds many fine memories. We have friends and family that we enjoy spending time with and we are all healthy and strong overall. I live an extraordinarily good life. In the grand scheme of things, the leukemia will be a blip on the radar....a little pill to swallow. But wow was it a jagged one, leaving scrapes and wounds going down that now have to heal and forever leave scars.

Allow me to wallow a bit. See, I’m coming up on my 2 year anniversary of my stem cell transplant. It’s not “a big milestone” in the medical world. THe big ones are 1, 3, and 5 years. At 1 year they celebrate the fact that the killer chemo only killed your bone marrow and not you. At 3 years they celebrate that you are “out of the woods” and your chance of relapsing drops significantly. At 5 years they celebrate that you are essentially “cured” and your risk of developing leukemia is the same as the normal person. But I am happy to be nearing my 2 year mark because there were days when 2 years seemed impossible. So here I am. Thrilled to be alive. Most days. Here’s the wallowing...and anger...and bitterness...and sadness...and grief that the little pill of Leukemia has left behind. Let me begin with some humor. Last month, I went in for a blood draw.
Lab tech: wow, those are some nice track marks on your arm
Me: uh, thanks?
Lab tech: no, really...those are impressive.
Never in a million years would I have thought I”d have track marks that compete with the junkies. I laughed out loud. Me. Track marks. So now I look at my poor veins and laugh. Some days I can see the results of thousands of blood tests over the past several years and other days I don’t. My veins are scarred and getting blood out of them is like getting water out of a stone (without Jesus’s help!). It’s a result from that jagged little pill that will be with me for the rest of my life.

Another humorous quality that will be with me forever is my lack of hair. Now, some days when we are crazy busy trying to get the 5 of us out the door in a timely fashion, I enjoy throwing on a wig and having it be mostly “ready to go”. No curling irons or blow dryers here! Hair product? Nope. Just me and my fake hair. Other days I get angry at my hair follicles for wimping out so fast and not even trying. I get angry at the chemo that saved my life. I get angry at the leukemia that came in and caused an upheaval of everything. Here’s the funny part. Or maybe not so funny. Before I had a wig, I’d go out with my head scarf and carry on running errands like anyone else. Well meaning people who touch my arm and say “I’m praying for you”. Usually I had all 3 boys with me and they were not the quietest bunch..and I felt like saying “I”m praying for me too!”. But those people thought I was in treatment still. I looked sick. Some people would assume I had breast cancer because I was young and female. On more than on occasion, I had a woman hand me a pink ribbon and say something along the lines of “I’m supporting Breast Cancer Awareness and a cure for you”. Well, that’s great and I support Breast Cancer Awareness as well but that’s not what I need a cure from. Thanks though. My favorite was when people would say “you look so pretty bald”. Uh...thanks? I mean, it was said with love from many friends and family but I DON”T WANT TO BE BALD! Bald is not the new beautiful. Bald is a constant reminder of what I’ve lived. So, enter the wig. Now I can walk out in the world and not be prayed for in the produce section or pitied in line at Target.

Ah well, I could complain and wallow for several more paragraphs but I must switch the laundry and fold a load. Let me conclude with some sort of point to this rambling. Leukemia itself was a rather little pill to swallow but boy did it leave scars and wounds from its jagged little edges. Scars that I’ll take with me forever. Wounds that are still wide open and bleeding. Scraps that still burn. My picture above with my husband doesn’t show them, but they are there. That picture shows the life I live 90% of the time. Happiness and contentment. Truly, I am blessed beyond my wildest dreams. But 10% of the time, I get angry, bitter and weepy. It happens and gosh darn it, that’s ok. When you’ve lived through what my family and I have lived through, you get to be a grouch sometimes. So there.

Fight Song

There’s a song by Rachel Platten called “Fight Song”. It’s kinda become an anthem for many cancer patients even though its not really about a physical illness. Music speaks to me...which I suppose is why it was my undergrad major. I thrive on listening to music. I especially tend to focus on the lyrics but also the beat, tempo, and instrumentation. I’ll listen to anything other than hard core rap. If you were to see my playlists on my phone, you’d see everything from Ella Fitzgerald to Eminem and literally everything in between. If you’re a music geek like me, you may have even noticed that every blog entry has a song name as a title. I know, its silly, but when you constantly have a song stuck in your head like I do, its easy to associate music with everyday life. I’m like a human jukebox! Now if only I could make money with my quirkiness....

Anyway, when you have a stem cell transplant, one of the best things you can do to speed recovery is to walk. No matter how awful you feel, try to get out of bed and at least walk around your room. Look out the window, sit up in a chair, walk the halls if you can. Do whatever you can do each day to get out of bed as much as you can. I promise you it will help you both physically and mentally. Now, if you’re like me, you’ll get bored easily. Same hallways day after day. I was bored after the first 5 minutes so I needed something else to focus on besides the tile floor, the indescript hospital smell and the IV pole constantly alongside me. So I made myself a Walking Playlist. Thought I’d share some of my favorite songs in case you needed a Walking Playlist...or maybe you just want some new music. Actually, many of the songs are not that new. Also, many are by Christian artists so I’ll break it into secular and Christian.

CHRISTIAN ARTISTS/SONGS
-Held by Natalie Grant
-Blessings by Laura Story
-What Faith Can Do by Kutless
-Hope in Front of Me by Danny Gokey
-Worn by Tenth Avenue North
-It Is Well by Bethel Music & Kristine DeMarco
-Trust In You by Lauren Diagle
-Need you Know by Plumb
-Just Be Held by Casting Crowns
-Where Were you by Francesca Battistelli
-Unfinished by Mandisa
-Overcomer by Mandisa

SECULAR ARTISTS/SONGS
-Brave by Sara Bareilles
-Roar by Katy Perry
-You and I by Lady Gaga
-Bruises by Train
-Sing by Ed Sheehan
-Late In The Evening by Paul Simon
-Sometimes you Can’t Make It On your Own by U2
-Blank Space by Taylor Swift
-Lips Are Movin by Megan Trainor
-Accentuate the Positive by Bing Crosby
-Be OK by Ingrid Michaelson
-Carry On by FUN
-Fix You by Coldplay
-Just A Ride by Jem
-Keep Breathing by Ingrid Michaelson
-Stay by Rihanna
-This’ll Be My Year by Train
-Honey, I”m Good by Andy Grammer
-Shut Up and Dance by Walk The Moon
-Somebody To Love by Queen
-Fight Song by Rachel Platten
-Bennie and the Jets by Elton John
-Keep your Head Up by Andy Grammer
-Better When I’m Dancin by Megan Trainor
-Uptown Girl by Billy Joel
-Stormy Weather by Judy Garland
-You Look Good by Lady Antebellum
-Walk On Water by Aerosmith
-I Gotta Feeling by BLack Eyed Peas
-Fighter by Christina Aguilera
-Walking on Sunshine by Katrina and the Waves
-Monday Monday by Mamas and the Papas
-Fire and Rain by James Taylor
-King of New York from Newsies Musical
-Dancing Queen by ABBA

So, its quite a list. Every song spoke to me either with the lyrics (particularly the Christian ones) or brought back good memories or was just an upbeat song that helped me pass the time. While this isn’t the most insightful post, I hope that it is helpful if you’re looking for some music to use while you walk those halls.