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.

The Good The Bad and the Ugly Part 3: The Good

I cannot emphasize enough that even though this experience had a lot of bad, a lot of ugly and a lot of unpleasantness; there was still an awful lot of good that came out of it. Please, keep reading.

1) Love and support from everywhere. No, really, from everywhere. We had meals coming in every other day and we could’ve had everyday if needed. We had babysitters, errand runners, house cleaners, grass mowers, prayer warriors, rides to appointments and support for my husband and kids from their friends who took them out for fun when they needed a break. From the day I was first diagnosed all the way past when I returned home from the isolation after transplant there were people offering help of every kind. The potty seat broke in the middle of the work week, one of Dan’s colleagues recognized the urgency of a broken potty seat with three boys under age 5 and hurried to the store to get a new one. What was truly amazing was the monetary donations that came. We initially were quite concerned with the cost of all of this. I was in the hospital for weeks at a time repeatedly. The amount of tests I had done is astronomical. Dr visits, ER visits, an ambulance ride, 3 months in a Marriot Residence Inn, medical supplies, home health visits, blood products, the list is never ending. We prayed and planned for the worst but our prayers were answered. On more than one occasion, we would get a very large medical bill and within 24 hours a donation would come in or a grant award would come through. When I was all said and done, we almost broke even. It was truly a miracle. Our very young kids didn’t have to go to daycare because my mother in law and father in law were both recently retired and were willing to take turns living with us. Things often were done before we even realized we needed something. Without the love and support of our family, friends, church, schools, colleagues and community we would not have survived financially or mentally! If you are going through a stem cell transplant, you and your caregiver will need help. There are organizations that can help you if you don’t have a support system in your community of family and friends. Reach out. Don’t do it alone.

2) I grew up as a good LCMS Lutheran. I went to church most Sundays and attended a Lutheran school from grades K-8 and a Lutheran college. I knew all about God and Christianity and everything I thought I needed. That is, until I faced death. Funny how God works. The day prior to my diagnosis, I had said “I just need a break”. I needed a break from parenting, cleaning, cooking..you get the idea. What I meant was a break on a tropical island or at the very least a solid uninterrupted 10 minutes in a bubble bath without anyone needing me. God sure gave me a break. I didn’t cook or clean or parent for close to 2 years. And yet, not once was I mad at God. I was hopeless, I was sad, I was angry at leukemia, I was lonely, I was angry at the doctors and nurses who couldn’t answer my questions but I was not angry at God. Not sure why I wasn’t because in the past God has been the target of my anger but not this time. I knew God was the only way I was going to get through this. My faith is so much stronger now than it was before. And for that, I am thankful.

3) When my boys make a mess or there are piles of laundry or everyone is hungry at once I get overwhelmed and sometimes irritated just as any mother does at times. However, it lasts such a short time because I remind myself that I’m here to do the laundry and clean the mess and make the meals and I’m thankful. There was a time when I couldn’t do that and it wasn’t certain that I would ever be able to do it because my survival was hanging in the balance. It could’ve gone either way. So today, I’m thankful for the loads of laundry and the crumbs all over the floor and the never ending grocery shopping and meal prep. There is nothing I pray for more than to be given the privilege to raise my children, grow old with the love of my life and to meet my grandchildren and maybe even great grandchildren. I appreciate the little things. In the long run, the little things make all the difference.

4) When you have an allo stem cell transplant, you have to be in isolations for 100 days post transplant and you must have a caregiver with you at all times. That’s a lot of time to talk to someone. Lucky for my friends and family, I had a wonderful cast of caregivers that took turns. Nobody was stuck with me for too long! During that time, I was blessed with getting to know my family better and making bonds stronger. Friends from years and years ago came to visit and it felt like we saw each other yesterday despite it being over a decade since I saw some of them. Never will I be able to say I am not loved. I am . My family is. God is so good.

5) I’ve mentioned old friends but I’ve made some great new friends as well. The nurses and doctors that saved my life have had some great conversations with me. One particular nurse, Alneta, held me while I sobbed on more than one occasion as I tried to emotionally deal with my situation. The family of a fellow transplant recipient walked with me in the hallways and visited with my caregivers. When their own family member sadly did not survive, they generously gave my family their parking tokens and a monetary donation. We still exchange Christmas cards. There are friends that are going through a transplant after I did or will be in the near future and I’m able to answer their questions and be here to support them. It is truly amazing how many people the leukemia has brought into my life.

6) Clarity. Prior to all of this craziness, I was searching for what I was meant to be. Why was I put on this earth? What was my purpose. God has given me not one but two second chances at this life. I thought my initial diagnosis was the end. I came though. When I relapsed and endured the transplant, the chances were less than promising that my life would continue. Yet, here I am typing this while my boys and I watch “A Bug’s Life”. Amazing. I’m here to be a mom, a wife, a friend, a daughter, niece, sister, cousin and to help. We, as a family, were given so much. Now I want to give back. I want to make a difference. Today, I live my life with a purpose: to raise my boys to make this world a better place. Not always sure I’m doing a good job but at least I know I”m trying.

7) Laughter. There are few people who can make me laugh so hard that I nearly wet my pants (ok, fine...I may have leaked a little). But the ones who can all managed to do so while I endured the trials and tribulations of leukemia. Trisha, my oldest friend who has been a part of my life since we threw sand at each other at the kindergarten sand table, came to visit me as often as she could. The nurses would see her coming down the hall and usually just close my door behind her because the knew the laughter would be loud. We laughed about everything and that was exactly what I needed. Shortly after I had returned home from my final chemo round in 2015, we had a party our house to celebrate. My chance of relapse wasn’t high so I thought we were done with leukemia. I was wronge of course, but we celebrated with great joy and hope that it was behind us. There is a group of friends from college that we’ve hung out with for years and when we get together, its a guaranteed good time. We played Cards Against Humanity. If you’ve ever played that, you’ll know you can only play it in certain company. This was the company such a game was accepted. I laughed and laughed and laughed and again, it was what Dan and I needed. Laughter is wonderful medicine. Especially when shared with friends.

Oh, and last but certainly not least...I lost 70 pounds. My weight has been trouble my entire life. Always the chubby one, the one with beautiful eyes, the girl with “curves” (aka...rolls). I’d tried losing and toning and all that stuff you’re supposed to do. Never worked well. I was a size 18 and nothing was going to change that apparently. Then leukemia and chemo and stem cell transplant came along and lo and behold...I”m a size 10. Now if only I arrived here in a more humane way. Again, God, when I asked for help with my weight loss, this wasn’t what I had in mind...but your plan is always best so thanks. I guess. Seriously though, I”m actually at a perfect weight for my height and I plan to stay that way.

You know how Oprah has her “Favorite Things”? Well, here are my favorite things that I’ve discovered as a result of transplant: heated throw blankets, Blistex, eye drops, yoga pants, fresh flowers, homemade soup, graham crackers crushed up with milk, ice cream, walking in nature, devotions and time with God, Hulu and board games. These are the things that got me through some tough times. And now, I keep them all on hand or make sure I experience it as often as possible.

And with that, I must say Goodnight because I have a jammed packed day of helping in my kindergartener’s classroom, taking my 4 year old to the doctor and having family over for dinner tomorrow. Mundane you say? No way. These things are important because I could not do them even last year. Classrooms and doctors offices and cleaning for guests were off limits until more recently. So I treasure these times that I can do these things. Have a wonderful night.

The Good, The Bad and the Ugly Pt 2: the Bad

You’ll be happy to know that this post isn’t quite as forthcoming with personal details as the previous post. No mention of anything below the waist!. So here’s the bad, again in no particular order:

1) Incredible weakness. I was not prepared for how weak I would be post transplant. When I moved into the hotel, I could not get up the 10 stairs to the upper room without stopping to rest. It took me well over half an hour to get dressed and brush my teeth because I had to sit down between each step. I did gain strength rapidly and could do more each day but I continued to need a nap each afternoon until around a year post transplant. Even today, my energy is not what it used to be prior to transplant. I require more sleep at night and I cannot do as much in a day as I used to.

2) No appetite or taste. The chemo and the acute GVHD really do a number on your desire to eat. The nausea itself is pretty bad but you add the mouth sores and the lack of taste buds on top of it and you end up with no desire to eat. In fact, eating became the least enjoyable part of my day. My poor family tried everything from Ensure and Boost to ice cream and jello. Some days I could get sherbert or a popsicle down but even those tasted bad. Of all things, pop tarts with TONS of water to drink seemed to work most days as well as chicken broth and sometimes ice cream if it wasn’t too sweet. I lost around 75 pounds by the time I was 6 months post transplant. The dry mouth and mouth sores were very very difficult and painful. I highly recommend ice chips and asking the nurses if they have a lidocaine mouthwash. Loyola did and it helped some but anything was better than nothing. The mouth sores had pretty much cleared by a month post transplant but then my tastebuds were not working and nothing tasted good and most things really tasted awful. I lived on soups, broths and ice cream for several months post transplant.

3) So many medications. At one point, I was taking 32 pills a day. Today, 21 months post transplant, I take 8 different medications and three supplements for a grand total of 19 pills a day. When I see my doctor on Monday, maybe I’ll be able to cut that down some. I can dream! The copays alone are expensive. Thankfully we have good insurance. On top of that, I still have three creams for various GVHD issues and during isolation, I had several more. Plus I had the Hickmann (similar to a PICC line but under my collarbone) which required daily flushing. My caregivers were all trained to do that and all did so wonderfully.

4) The restrictions. Seriously, the restrictions are unreal. Don’t do this. Don’t eat that. Don’t touch this, don’t go there. Basically, I lived in a bubble for months. For the first 100 days after transplant, I could not eat anything uncooked or anything that may not be cooked well. No fresh produce. No tap water. Nothing from a restaurant or fast food. My caregivers had to prepare all food for me. I wasn’t even allowed in the kitchen because my platelets were so low that a burn or cut would likely lead to heavy blood loss and/or major infections. I couldn’t eat yogurt or soft cheeses or lunch meats unless they were pre-packaged (think Oscar Meyer). No food could be “left over” more than 24 hours. There was literally several pages of guidelines for foods and food preparations that my caregivers had to follow. Then there was the visitor restrictions. Visitors had to remove shoes, wear a mask, wash hands and not sit near me or touch me. I couldn’t t go in public unless it was outdoors like walking around the hotel parking lot. There were restrictions about going outside after it rained (couldn’t for 24 hours), no wood burning fireplaces, had to leave room when housekeeping vacuumed, and I coudn’t be in contact with anyone who was even slightly ill. This meant that my three boys were not able to visit very often because they were often ill with runny noses or coughs or anything else that little kids typically get. When they could visit, they couldn’t actually come into my room so I visited them outside. I had to wear a hospital mask, gloves, gown and most visits could not hold or hug them. It was the worst thing for a mother to have to deal with.

5) Mortality. Heaven. My spouse remarrying. My children growing up without me. Someone else taking on the role of my children’s mother. These were all things that I had to consider as very real possibilities. There were 4 people in my cohort of stem cell transplants. Only 2 of us made it out of the hospital. This wasn’t a “you’ll be fine, its just painful” kind of procedure. This was a “have you thought about what you want to happen if you don’t make it” procedure. I had to have very difficult conversations with my husband about what I wanted my funeral to be like. What I wanted done if I were to die. That I didn’t want my child red to have to see me in a casket and I’d rather be cremated. I had to tell the love of my life that if I were to die, that I wanted him to be happy and move on and hopefully fall in love with someone else. My kids all had to learn about death and dying and heaven. They had many questions that took a lot of though to answer in a way that was honest but didn’t scare them. My middle son still has some residual anxiety from all of the things he had to deal with at such a young age. My youngest has no memory of me with my own real hair. My husband told me that at one point, he had planned to sell our home if he needed to if I were to die. Our home that he built with his own two hands from the ground up. Our home that we planned and worked on together. It broke my heart that he would even have to consider this but it was a distinct possibility that either we would need to downsize to pay the bills or that I would die and the memories we had in this home would be too much for him.

6) Missing out. I missed out on seeing my youngest’s first steps. My husband sent me video but it wasn’t the same. I missed my baby’s first steps. I missed his potty training (ok, that wasn’t so awful), I missed my oldest’s Mother’s Day Tea that his kindergarten class put on. I missed Christmas programs and field trips and birthday parties. When I add it all up, from initial diagnosis to the day I came home from isolation, I was either in the hospital or in isolation for about 32 weeks. From September 2014 to August 2016, I wasn’t even home for 32 of those weeks. That’s a lot of time to not be with your husband, children and in your home. When I was home, especially late 2014 and post transplant 2016, I was either too sick from chemo side effects or GVHD to do anything with my family. I finally feel like I’m a full time mom again. 21 months post transplant. Now I want to make up all the time I lost but some I cannot. Some is just lost and I have to accept that and move on while treasuring every moment I have with my boys and husband.

7) GVHD and Chemo side effects. Let me list all the things I have had as a result of the transplant and/or the chemo used for the transplant: alopecia (hair loss), extreme dry eyes, vision changes, dry mouth, weight loss, fatigue, low immune system, loss of appetite, skin rashes, extreme sun sensitivity, major bowel incontinence (see previous post), sexual issues (see previous post), short term memory loss from all of the chemo, skin peeled off bottom of feet and palms of hands in sheets of skin (gross..so gross), fingernails detached from nail bed while new ones grew underneath, residual cough that never goes away (from Bulsafan...a conditioning chemo), and probably others that I have forgotten. Today, my biggest lingering GVHD issues are the extreme dry eyes, vaginal issues and hair loss. I’ll never ever be the same as I was prior to transplant but I’m alive and mostly living a normal life.

So if you’ve read all of this, you’re either scared to death to go through with your own transplant or you’ve been through it and understand what I”m talking about. Or maybe you’re not dealing with AML directly but are a caregiver and this gives you an idea of what you may encounter. I urge you to read my next post... the GOOD part of all of this. Yes, there was much good. I promise to post that one very soon. Hang in there.