Gimme Shelter

"oh, a storm is threatening my very life today, if I don't get some shelter, I'm gonna fade away" -Rolling Stones "Gimme Shelter"

The song was released back in 1969 with lyrics referring to the violence of the Vietnam War.  Seems appropriate today in the midst of the CO-VID19 chaos going on. As a stem cell transplant survivor, this "shelter in place" thing isn't new to me. If you're reading this as a fellow survivor, its not new to you either or your caregivers. We've done this before. We've worn the masks, the gloves, the gowns and we've used countless Clorox wipes and bottles of hand sanitizer.  We've washed our hands raw and keep 6-10ft distance from everyone in public. We've gone months without seeing friends and family who weren't our appointed caregivers and we've gone months with little to no physical contact with our own children. This isn't new for us. Whats different this time is that I"m not expecting to die. I'm enjoying isolation. Ok, well....to be honest, I deeply miss my friends and I am saddened that my boys are missing out on so much that they looked forward to. Overall though, I am doing ok wearing my fleece lined leggings (which I wouldn't wear in public because I'm not really built for them), a hoodie and no wig. I"m enjoying doing puzzles and playing games with my boys and I'm enjoying not having to be anywhere at anytime. ELearning is doable but certainly not ideal and I will admit that I have consumed a greater than normal amount of wine and spirits since school was canceled due to eLearning. I am blessed that my boys don't struggle with reading or math but there is many reasons I don't homeschool my children. All of them have become crystal clear since March 13 (our last day of school). I learned about mixed fractions and linking verbs and the scientific method and I use those things often but do I remember the steps to multiply these fractions or what words actually are linking verbs or the steps to the scientific method? Heck no! Essentially, I am currently a kindergartner, 2nd grader and 4th grader all wrapped into one who also does laundry, cooks, cleans, entertains the children and keeps the household organized.  I am a very good teacher as long as the kids aren't my own! I have patience and compassion and empathy as a guidance counselor but if its my own offspring, that all goes out the window. There are days that I understand why some animals leave their babies to fend for themselves after just a few months. But I love my kids with all my heart and I thank God every day for them and I also thank Him for giving me the shots of humor and joy that I get from them to overshadow the angry fits and whining (from them, not me...mostly).

As for my health, I'm doing pretty darn good. I do worry about getting this virus but I also know that I'm a germaphobe and I'm well versed in protective measures. Hopefully I've already had it disguised as one of the millions of colds or upper resp. infection. Still have GVHD of the eyes, some random skin rashes that pop up, dry mouth, the annual November-April or May cold and cough and some continuing trouble with my girl parts. But in the big picture, I'm healthy and doing well. 

As difficult as this quarantine is, there is good. There is always good in each situation. Some days I forget this and I'm grumpy and irritable and no fun to be around. My husband and kids will testify to this. But I'm working on it. I'm looking for the good and the joy and when I was battling leukemia, I was always positive because it was a survival skill. Funny how when things got easier and death wasn't knocking on my door, I lost that sunny outlook and began to focus on the negative. I think this quarantine is forcing me and many to find the silver linings again. The good I see now is that my boys are getting along better than they have in months. They still squabble and tattle and cry over nonsense things ("he touched by cardboard box") but they also snuggle and hug and read together. They play together outside and make up games more than they have in years. All five of us are getting more sleep and staying more active because we aren't sitting in cars going places or sitting at desks working/learning. My house is more organized and actually gets cleaned regularly instead of the panicked weekend recovery clean that we used to do or the worst case scenario clean up when you see a car pull in the driveway that isn't Amazon or UPS! 

This isn't a good situation by any means. People are dying. Lots of people are suffering. Families are having funerals and weddings without loved ones attending. Businesses are closing and people cannot make financial ends meet. But this isn't permanent. So while we are forced to self contain, we can't worry about whats out of our control. Instead, focus on what you can control and find the silver lining.  Here is mine:

With or Without You

About 25 years ago, one of my best friends at the time gave me a U2 CD (you know, those shiny disks with music on them that are almost obsolete??). It was The Joshua Tree album and I played it over and over and over again. I loved it. The song "With out Without You" swirls in my head to this day as a direct result of listening to that CD relentlessly. It fits a great many purposes....singing it to my children when they throw a fit, singing it to the sun as it blinds me while I drive, singing it on the way to another appointment with another specialist and my recent favorite....signing it to steroids. Ahhh yes, the roids.

About a month ago, life was going along swimmingly. Kids were in school, I was in a routine and things were running smoothly. Then one night at 4:30am, my 9 year old came running downstairs to our room saying the cat caught a bat in his room. Sure enough, the cat did corner a bat in a trash can. My brave husband captured it and released it. We all went back to bed and thought nothing more of it....well, the kids were terrified so they slept on in the living room. The next day, same son had a follow up with his ENT dr. Son casually mentions bat, doctor flips out. Apparently this calls for an ER trip for precautionary rabies vaccines because the bat may have bit any of us while we slept and we wouldn't have felt their tiny sharp teeth and it wouldn't have left a mark. Oy. So...$450 in ER fees later, we are all vaccinated against rabies.

A week or so later, a deer died on the shore of our lake. Poor thing stumbled, fell, flailed and eventually just dropped dead. But now we had a deer, dead, about 5 feet off shore and only partially submerged. Know what? Nobody can help you with this! I called every government office I could think of...animal control, highway department, animal shelter, the veterinarian,  even the local Purdue extension to try to find someone to come get the dead deer and dispose of it. Thankfully my father in law and our neighbor came to the rescue and, with the help of foxes overnight who dragged it partially on shore, they pulled it into a trailer and dumped it in the woods. Nature took its course and  its all gone.

While all of this wildlife nonsense ensued, I started to notice small pin prick red dots on my abdomen. Naturally, I ignored it. Surely it was a reaction from the rabies shots. They got bigger. They spread. They itched. Day later, they were on my back, chest, abdomen and back of my neck. My husband's main purpose when he got home from work was to scratch my back. I trained my kids to scratch my back. I took Benadryl and used hyrdrocortisone cream. Nothing helped much. Here I am still thinking its a reaction. Time passed and about two weeks later, I brushed my teeth and spit out pink spit. Something in my mouth was bleeding. So, like any worrywart would, I pulled out my phone flashlight and checked in the mirror. Oh my Lord....white patches. Surely its something horrible. Oral cancer? My mind raced. I called my dentist. He said it was thrush. This caused more panic. Thrush?? Thrush comes from low immune system. I don't have that. Or do I? Maybe I'm relapsing? My heart sank and my mind raced with the worst case scenarios.

By this point, my mouth hurt, I was red and itchy, my eye was dryer than ever and anyone who saw me probably wanted to run the other way because I looked awfully contagious. My transplant team was updated as these things happened. I had to get permission for the rabies shots, I told them about the "thrush" and even mentioned the rash. They said "probably GVHD" and "see you at your scheduled appointment". I couldn't wait that long so I went in earlier. They gave me a steriod rinse for the mouth gvhd which was not at all thrush. I started 40mg a day of mythelprednisolone (a powerful steroid) as well as going back on Bactrim.

So here I am, day 3 of the 'roids. I can hardly sleep. My mind is racing. I'm hot and my cheeks are flushed and i feel like I have so much energy! I'm fidgety and can't calm down. These steroids are kinda awful already and I haven't even gotten the water retention, weight gain and moodiness side effects yet! On the flip side, I can see great improvement in the rash and am less itchy. So now I sing "I can't liiiiivivveeeee with or without youuuuuuuu" to the 5 pills of steroids I take each morning. Another bump in the road but at least I"m still on the road!

On the Road Again

oh hey! Its been awhile since I've posted anything. Sorry. We had a jam packed summer of soccer, baseball, swim lessons, parties, bbqs, bible study, day trips and road trips. When my family does a road trip, we drive...alot. I mean, that is the point of a road trip right? Typically we drive anywhere we go. My boys have never flown on an airplane. Its the cost, yes, but also the flexibility and the adventure of a road trip. Our boys LOVE the first three quarters of any road trip. I've made binders with wipe off pages of Road Trip Scavenger Hunts (road signs, car brands/makes/models, fast food or store signs, etc) for each boy and they love playing them. Healthy competition keeps their attention! We also have a DVD player in the mini van as well as many rounds of "20 Questions" or "What Movie am I?" This year, my husband drove about 25 hours and I drove about 6. He likes driving more than I do....and I wasn't with on the first leg of the trip. "Why weren't you with?" you ask....well, that is why I'm posting this blog post. While I am, by the grace of God, in full remission and have hit a major milestone at the 3 year post transplant mark, I am by no means "normal". Traveling, for me, takes a lot of planning and sometimes I just opt out.

This year, the plan was for the boys to spend a few days at Gramma's, Dan would go pick them up and drive them to his parent's cabin in the U.P. of Michigan, come home to pick me up then go on to our annual trip to Nashville, TN to visit family then return home. All in all, the  boys were gone for 18 days, Dan was gone for 15 and I was gone for only 7. Everyone had so much fun and while I did miss being with my guys for the cabin portion of the trip, I think I made the best choice by staying home.

My body still has side effects from the transplant that will remain with me. One of those is the fact that I cannot swim in fresh water bodies of water. This includes lakes, rivers, ponds, and basically anything that isn't a clean swimming pool or an ocean. I also cannot be in the sun for long periods of time as it will cause a skin reaction and also can trigger GVHD to flare up. These are strict instructions from my medical team and they remind me at the start of every summer that I must adhere to these guidelines or pay the price with GVHD and possible life threatening infection. Because of that, I opted out of the cabin trip this year because it involves alot of lake time, outdoor hikes and bike rides and sunny time at the dunes. In previous years, I've taken several books with me for this trip and spent most of my time indoors, reading by myself. I decided this year that I could use my time better being at home without interruptions and tackle some house projects and also spend some time with my mom and sister. Turned out to be a good decision and I enjoyed it a great deal! However, I will return to the cabin trip next year with my pile of books because my boys said they missed me. Perhaps it will be an every other year trip.

The Nashville portion of the trip was much more appropriate for  my limitations. While I did have to sit out the bike rides and the river exploration, I mostly kept up with everyone. I love bike riding but the humidity and heat in Nashville limits my physical activity. My sweat glands still don't work properly and I overheat pretty quick. Nobody wants to have to pick my big booty up from the sidewalk and drag my incoherent body to shade and dump cold water on me. So I stayed behind and caught up on some TV shows and reading.

My boys and husband can pack for a trip in a matter of minutes and fit it all into one duffel bag. Me? Not so much. I need time to plan out every situation. I count out my meds for the trip, pack three extra days worth in case we get stuck somewhere without a CVS close by, and often times have to appeal to my insurance company to let me refill early so I have enough for the trip. Then comes the lotions and potions. I need sunscreen every day (which you should be putting on too!!), estrogen cream, bioidentical cream, hydrocortisone cream, three types of eye drops, face cleanser for sensitive skin, lotion for sensitive skin, cream to hide the bags under my eyes, three different contact solutions, benedryl cream, nasal saline spray and a partridge in a pear tree! Thats just the stuff that I need because of side effects of transplant. I also take the usual make up, body wash, toothbrush and paste etc. Then I need the wide brimmed hat, two pairs of sunglasses, two wigs, head covering for sleeping, wig brush and comb, and the ever present water bottle. I drink more water than anyone I know because my mouth is so dry. In addition, I must always carry two important pieces of paper with me wherever I go: my current medication list and a letter from my transplant doctor with my medical history/diagnosis and my need for irradiated blood should I need a transfusion. Those papers could mean the difference between life and death.

Now, I have taken a couple flights with just my husband (no kids!) and on those trips, I must have several things: Clorox wipes, Antibiotic cream and saline spray. I use the clorox wipes to wipe down EVERYTHING near me in the plane especially the seat belt, tray, arm rests and buttons. I then put antibiotic cream on a q-tip and smear it inside my nostrils then often spray saline spray in my nose. This was recommendations from my doctor and I've done four flights and have not gotten sick. The other thing I do is aim the airflow from above to blow the air away from me.

Once I get all those vital things ready, then I can actually pack the normal stuff that everyone else packs. Why do I tell you this? Maybe you're reading this thinking "i am not alone, she also needs so much to travel with!" or "wow, I CAN travel, I thought it was too hard or not possible" or maybe you're reading this as a caregiver or spouse who thought your loved one was overreacting with all the stuff he or she needs to travel with.  I am a lucky one. I don't need much in the grand scheme of things. Some of you are on oxygen or need special garments or more medications or creams. I am blessed to be doing as well as I am. I hope you, reader, will get to enjoy road trips and travel too. It is doable, it just takes some planning and lots and lots of packing. 

Money

Ah money. Something that we need and most times never seem to have enough. Money is so vital in our society that many bands have written songs about it. Most known Money songs include the ones by Pink Floyd, ABBA and even the Beatles. I'm not one to complain much about money because I'm blessed beyond words with my husband, kids, family, friends, home etc. But I want those of you who are going through a stem cell transplant to be aware that there is a significant cost involved with keeping a decent quality of life post transplant.

I am currently 3 years and 1 month post allo SCT for relapsed AML.  I am one of the lucky ones with very few cGVHD complications. Here is what I have going on: extremely dry eyes, vaginal adhesions, minor GI issues, dry mouth, brittle nails and alopecia (my hair on my head never returned). I also don't sweat much or at all and my thyroid is not functioning well. For all of this, I am thankful because I know of people at my stage that are on lists for lung or liver transplants or have such horrendous GI issues that they can barely leave their house.  So please understand that this post is not for pity or seeking financial resources/help, it is an informational post for those who are unaware that life isn't back to normal when you are post transplant.

Here is a typical month of costs for my minor GVHD issues:
Copay for dr: $30
Prescriptions thru CVS: $69.09
3 month supply of thyroid med (Nature Throid March-May): $40/month
Bioidentical Hormone cream: $65
Contact solutions: $75 (preservative free saline, drops, conditioning solution)
OTC medications: $30 (acid reducers, vitamins, omega 3s)
Personal care items: $45 (sunscreen, chap stick, sanitary napkins,  various creams and ointments)
Wig supplies: averages to about $10 a month
Wigs $580 this year so average to $48 a month
Scleral Contacts: $600 a year so average to $ 50 a month
GRAND TOTAL:  $462.09

That's not including the labs and phlebotomy or various specialist or random hospital stays because I've met out of pocket limits so I don't know what those costs are without going through files and since its a beautiful day outside as I type this on the screen porch, I just don't want to go through files. You get the point though that life is expensive.  I believe my husband mentioned that he just paid my recent hospital bills and they were around $500.

These costs are not optional. They are necessary to have a decent quality of life. Sure, I could go without a wig. I could go without contacts but I wouldn't be able to drive or go out in public without feeling like everyone is looking at me and pitying me.

So please, if you are a family member or friend of a transplant survivor, understand that they have a financial burden that is necessary to keep them living life to their fullest ability. You may not see it or they may not discuss it, but it is there. Please be respectful of that. And if you or your loved one are just starting on this adventure, please don't assume that the costs end when you've finished treatment.

I am fortunate to have a husband who has a job that pays enough for us to make ends meet. I shop sales, use coupons, we don't spend needlessly and (usually) live simply. I am also on Disability through SSA which helps a great deal. I hope to go back to work one day but I am still on immunosuppresants and cannot go back to working in a school setting.

As you plan for your future financially, make sure you consider the cost of quality of life expenses. I'm only 38 years old and these expenses will probably only grow as I age. Maybe one of my kids will land a job as a professional athlete or superstar actor and they can support me!! If not, we will be fine because we are aware of these costs and are planning accordingly. I hope you do the same.

Heartache Tonight

Back in the late '70's, The Eagles came out with the song "Heartache Tonight" that reached No. 1 on the Billboard charts. While I've never had a song reach anything on any chart, I sure did have a heartache one night. No, my husband didn't break my heart and my kids didn't break it either although they may break my patience almost every single day! While The Eagles sang of emotional heartache, I had physical heart ache.

April 3rd was a cloudy day and I needed to exercise so I jumped on the elliptical and pushed myself to get through an intensive aerobic workout. My jeans were fitting a bit tight after months of Christmas and Valentines and birthday celebrations and it was time to get back to regular exercise. I finished my workout and felt great! That evening, I felt a pain between my shoulder blades in my back. It was a gnawing pain and I assumed I overdid on the elliptical and pulled something. I went to bed that night hoping it would subside and be better in the morning. I awoke around 3am with intense pain in my upper back and minor pain in my chest making it difficult to take a deep breath. I got up, took two Advil and went back to bed still thinking I pulled something.  By morning, it was worse still and I decided I better go see my dr for something to help my "pulled muscle".

I went to see my GP and explained my elliptical workout and told her I assumed I was out of shape and over exerted myself.  The weird part though was that it hurt much worse when I laid down or changed positions from sitting to standing or vice versa. She said I should get some tests done so off I went to the outpatient center. There I had labs drawn, two EKG's, an ECHO and a CT of my chest.

Labs were fine. Whew, no relapse. CT showed slight opacity in my left lung which could be minor pneumonia or cGVHD.  The big issue was my blood pressure was very high at 156/94 and my pulse was racing at 113. The first EKG they did as I laid flat on my back and the pain was almost unbearable. I could hardly breath and certainly wasn't relaxed. That EKG showed that I was having a heart attack. Thankfully, the technician ran upstairs to the Cardiologist's office and showed him and he told her to do it again but have me sit up. When we did that, the pain was less intense and the EKG showed pericarditis. It meant that the lining around my heart was inflamed.

This landed me in the hospital overnight for observation and a large dose of antibiotics "just in case it was bacterial". Turns out it was either viral or another cGVHD symptom. I left the hospital with some meds for my blood pressure (which I'm now off of) and just minor lingering pain. I had my follow up with the cardiologist and he released me "unless I need him again". My transplant doctor wasn't overly concerned and said it was likely viral and a "one and done" experience but it could be cGVHD and may reoccur. But at least now I know what it is and will get into doctor promptly instead of taking Advil at 2am.

Behind Blue Eyes

Eyes. Windows to the world or windows to a person’s sole...depending if you are looking out or someone is looking in. My eyes are two faced. All my life I’ve been told how beautiful my eyes are as they are a deep rich blue. Beautiful as they are, they are uncooperative and have been since birth. I was born with strabismus. It is a condition where one or both eyes are turned inward causing lack of depth perception and double vision. I was cross eyed.

Three surgeries before I turned 5 were valiant attempts to correct my problem. They worked for the most part. My eyes are no longer crossed and I do not see double. However, play a game of catch with me and you will quickly notice that my depth perception is still lacking. Remember those “Magic Eye” pictures that were cool in the early to mid 90’s? You were supposed to stare at a bunch of colors or patterns and eventually an image would pop out at you. Not me! I could stare all day and nothing would appear. Attending a 3-D movie is a waste of money. I’ve tried several times. Still looks like a normal movie to me. So.....how do I drive and not get in fender benders you ask? I’ve never known any different. I never ever had depth perception so I don’t even know what I’m missing. My body has learned to navigate in a world without depth perception. For the record, I’ve only had two fender benders and neither were my fault. Ok fine, maybe one was a little my fault. Really it was the civil engineers who designed Target’s parking lot to have narrow aisles and the lady who decided to back up directly behind me as I was backing up. That’s another story though.

At age 15, I got glasses and shortly after, contacts. My eyesight was great but the muscles in my eyes were stretched and weak from the three surgeries in early childhood. Oh wait, let me back the train up here. I forgot to tell you my super awesome weird fact. The reason I have no depth perception is because my brain is not wired to use both eyes at the same time. So while both eyes see at the same time, the signal to my brain only comes from one eye at a time. I favor my left eye and when I use my left eye to see, my right eye gets lazy and wanders up and out. When I favor my right eye, my left eye wanders a bit as well but not as noticeable. I cannot tell when my eyes are not straight unless I look in a mirror. My glasses and contacts are over prescribed to keep my eyes straighter but it doesn’t always fix it. I often found myself embarrassed when I was a teacher and I would call on someone that I thought I was looking directly at but my eyes were not both straight and they student could not tell where I was looking.

I have grown accoustomed to my crazy eyes and don’t think much of their laziness anymore. Just for fun though, they’ve decided to spring a leak when I was getting chemo on more than one occasion. I had bleeds from the blood vessels on the back of my eyeball which caused small floaters in my vision. They were caused by very low platelets due to the chemotherapy. That’s all healed now.

After my stem cell transplant, my eyes decided to be the center of attention yet again. Apparently they felt the need to compete with my other side effects. My tear ducts went on strike. “Heck No, We Won’t Flow” was their chant. Not one tear.  Your body makes three kinds of tears: watery, mucus, and oily. My watery tear glads shut down. So while I can have a sheen on my eyeball and it appears to be wet, its the oil not the watery tears that whelm up and spill over when you cry. The mucus glands also work as I have lots of eye goobers. Bonus....eye boogers aplenty! How do I know I have no watery tears? Well, my “dry eye specialist” did a fun little test where he sticks a piece of litmus paper to my eyeball and I have to close my eye with it in there and hold it for 3 minutes. After the longest 3 minutes ever, the doctor comes in and checks how much of the paper has absorbed/changed color from the tears. Normal is around 15. My left eye was 0. Right eye was around 2. Dry eyes confirmed.

Doctor optimistically said that we have options. Option one was to put tiny little plugs into the drainage ducts so the little amount of tears produced would not drain out. Think about sticking a tiny birdseed into the eye of a needle and then make that 5 times harder. That’s about what had to be done.  Cool trick, but it didn’t work. Next option was to try all the various drops on the drugstore shelves. All helped some but none of them enough to improve my quality of life. I was miserable. Next up was perhaps the second most gruesome medical procedure I’ve endured. Second only to bone marrow biopsies. The doctor cauterized my drainage ducts. Yep. I could smell the inner corner of my eye burning and see the tiny billows of smoke and hear the sizzle. But before that party started, they had to numb the inner corner of my eyes. With a needle. Talk about a party starter. After all that, it didn’t even work.

Next option is where I am now and that is using sclera contact lenses. They are hard, big contact lenses that need to be put in with a plunger like object and filled with saline. It gets easier everyday but the dryness is still an issue. A parting gift left behind by leukemia. I recently say my eye specialist (the scleral lens specialist, because one eye specialist wasn’t enough) and she basically said that I’m out of options. This is as good as it’s going to get.  Looking at my eyes, they often look just fine and you’d never guess that it feels like someone sticking a hot stick in my eye each time I blink. Other times mybeyes look red and irritated as if I had Pink Eye. Very few people realize how much maintenance I deal with just to be able to see comfortably for a few hours each day.
“No one knows what its like .....behind blue eyes” -The Who


On the positive side, I can see. I can drive. I can read. It’s a lot of saline solution and drops and plunger and it hurts to blink almost all of the time. But today my 9 year old made a face and I saw his joy overflowing with his sillyness. My youngest decided to be a robot drummer and I was able to see it. My middle boy attempted “The Floss” and I nearly wet my pants laughing so hard. It’s good to see even if sometimes it’s painful. Even if sometimes it’s foggy  or blurry. Even if my eyes are dryer than a dessert and still don’t stay straight sometimes. They are my window to my world. And these eyes have seen a lot of loves.
“These eyes have seen a lot of loves....” -The Guess Who

There Can Be Miracles

Think back to late 90’s, there was a movie from Dreamworks called Prince of Egypt that had the hit song “There Can Be Miracles”. It was covered by many and sung way to many times at middle school fine arts festivals and vocal showcases. Or perhaps you remember the much older song by Barry Manilow (don’t judge, my mom listened to him, I did not choose to) It’s A Miracle.    
It went something like “a true, blue spectacle a miracle come true”.  Barf. Cheesy. Gag. I don’t like either of those songs. But Tammy, why do you know the lyrics? Hmmmm? I’m defective. I know lyrics to so many songs. If I could replace the space that song lyrics take up in my brain with actually useful knowledge, I could be a neuroscientist or astrophysicist or some other genius. Alas, I’m a stay at home mom with two currently useless licenses: music education and school counseling.  Useless because I cannot currently work in a school setting due to being on immunosuppressants. But I can win at song lyric trivia or “Encore” any day of the week! My point is that those are the only two songs that popped up in my brain when I thought of “miracle”.

Three years ago today, I sat in the very chair I am now writing this blog post from and I was shivering, feverish and fighting an infection. I had been fighting a cold since Christmas and on January 18th of 2016, I went to my primary care provider for an antibiotic. She did some bloodwork just to be sure it wasn’t anything like a relapse. My counts were all low. I called Loyola and they wanted to see me so Dan and I went in. Bloodwork was done and we anxiously waited to get a bone marrow biopsy done. My dr came out and said that the bloodwork showed that my counts had come up a bit from what my test showed the day prior at my primary care dr and we were sent home without need for a bone marrow biopsy. It was probably a viral infection and since I wasn’t having fevers she was not overly concerned. I was to come back in two day and have blood drawn again to make sure it continued to show rising counts.  January 22, we returned to Loyola for more labs and waited in the exam room for my doctor. It was a long wait. She came in and said my bloodwork looked worse and told me to go get it drawn again. She wanted to be sure it had really dropped and wasn’t a lab error.  Another blood draw. Same low counts. Now an unplanned bone marrow biopsy. I cried. Sobbed. From the pain, from the fear of the unknown, from knowing in my gut I was relapsing. I cried and desperately asked her, in between sobs as she chiseled a giant hollow needle into my pelvis, “do you think I’m relapsing?”. She wouldn’t say. Doctors can’t predict the future and they won’t try. I laid on that exam table, face down, squeezing Dan’s hand as I sobbed and prayed for God to take it all away and let me live. The pain of the biopsy is brutal. It is a horrendous procedure which I’ve endured 17 times. This one was by far the worst because of the emotional baggage it had along with it.

We waited. Waited for the early results from the biopsy. We were in the waiting area in the Cancer Center and Dr. Dean came out to tell us it was inconclusive. She sent us home. Hope! Maybe it was just viral!

January 26, my favorite aunt’s birthday. Ok fine, she’s my only aunt. But she’s my favorite only aunt! I woke up and probably called her like I’m going to do today in a short while. I was feeling worse. This viral infection was getting worse. I now had chills and a fever. I called Loyola and they told me to go to my local ER for “a quick blood test”. I didn’t say goodbye to my boys beyond a quick hug and a “I’ll be back in a bit”. My mother in law, Sue, took me to the hospital and Dan stayed home with the boys. They drew my blood and we waited in a triage room at Porter Regional Hospital. Finally, a doctor came in and told me that my counts were extremely low and they had contacted Loyola. My platelets were below 20. I was in danger of bleeding out from any minor injury.  I had to be driven to Loyola in an ambulance. My God, why? I didn’t even say goodbye to my boys. My husband wasn’t with me. Why? How is this happening? I knew. I was relapsing. Nobody would confirm it but I knew. The ER staff still said it could be a bad virus. I called my mom from the ambulance and told her it could be viral. I clung to that. A sweet nurse at Porter hugged me and prayed over me before I got in the ambulance. I wish I knew her name to go thank her because after she prayed over me, I felt peace. I felt like God was in control once again and I had to let Him take the reigns and just hang on for the ride. Speaking of rides....driving 80/94 at night in the rain is hard enough but riding backwards in an ambulance knowing that you’re relapsing is a whole other level of hard. Yet, I was making small talk with the paramedic and thinking ahead to all the tv shows I will be catching up on. I could not think about my boys. Dan was meeting me at the hospital. My heart ached and yet I felt peace. I couldn’ explain it yet.

The next day was a lot of tests and waiting for answers. I was told about 6 months prior to this that I had a genetic defect and did not have any match for a donor if I were to need one. Well here I was. Needing one. I had no full blood siblings. My cousins, Justin and Julie, were both tested. Typically cousins are not considered but my cousins are special. They are double cousins. My dad is their dad’s brother and my mom is their mom’s sister. The Harrell brothers married the Weldon sisters. It sounds weird and sometimes people think our family tree has loops, but its not weird. Julie wasn’t a match, which surprised me because we look similar in some pictures, but Justin was a close match. Nurses repeatedly asked me if he was really “just your cousin”. People thought maybe he was really my brother. He would’ve been my donor if needed.

Finally, my doctor came in, the day after I was admitted and confirmed the relapse. She also said that there was a glitch. A computer glitch. I did not have a genetic defect. I had 8 donors who were a good match. There is is. The miracle. A giant world renowned medical center such as Loyola does not make mistakes like this. The Be The Match Foundation doesn’t make mistakes like this. A computer glitch? For real? Nope. It was a miracle. A true blue spectacle miracle come true. God can change water into wine, He can feed 5000 with two loaves and a fish, He can walk on water and He can remove genetic defects. And here I am, January 26th, 2019 to tell you about it. There is a God and He is good. Now, I need to go call my favorite aunt and wish her a Happy Birthday.

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.

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.