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.