Halloween

Three years ago today was a milestone. It was the first time I was told I was in remission. I had been home for 3 days after 5 weeks in the hospital and I was dealing with chemo side effects and incredible weakness. The way I felt when I first came home was unreal. It was an overwhelming relief to be home again but also a deep ache of unknown future and so many side effects of chemo. Nothing tasted good. People smelled bad. My own children and husband made me sick to my stomach because my sense of smell was so incredibly altered that normal human smells made me ill. The smell of food was the worst. Our house had been cleaned from top to bottom and was extremely clean yet it smelled horrible to me.

My boys were dressed as Sesame Street characters: Grover, Elmo and Cookie Monster. I insisted on going trick or treating with them despite being extremely fatigued and weak. At that point, I wasn’t sure if I’d ever see them enjoy another Halloween and I was not about to miss the chance that year. It was cold and sleeting and miserable out. Chemo made me cold anyway but then being outside I was beyond cold.

Tonight, as I watched by boys trick or treat, I praised God and thanked Him for giving me the privilege to be here to experience the joy on my boys’ faces as they bounced from house to house gleefully saying “Trick or Treat” followed by a polite “thank you”. It’s been a long long hard road but I’ve come so very far.

Not the Doctor

The weekend finally came to a close and the hospital world started to move again. Monday brought some answers but also many more questions and confusion. Here is what we knew:
I had AML subtype M4
It may or may not have spread to my CSF (cerebral spinal fluid)
Bone Marrow biopsies at Loyola hurt like the devil because they do it bedside (no sedation)
Lumbar punctures are no fun either
I wasn’t going home in 2 weeks as previously thought. More like a month.
This wasn’t going to be quick and painless.

Here is what we didn’t yet know:
The genetic markers of the AML. Did I have favorable or unfavorable markers?
WOuld I need a stem cell transplant?
What treatment would get me into remission?

Now, let me explain something. If you’ve never had the experience of being in a “teaching hospital” (one associated with a university or medical training program), its totally different than a typical community hospital. There are so many people that come talk to you and so many of them will say that they are “not the doctor”. At some point, I wanted to say “then get the heck outta my room”! Every morning, the “doctors” start invading around 8am. First the interns. Happy shiny teenagers, ok...early 20’s, who are useless. They ask you all sorts of questions and give you an exam. Next come the Residents. Slightly older but still happy shiny useless non-doctors who just repeat all the same questions and same exam. Then finally the leader of the useless non doctors, the Attending, comes in and actually does something helpful. His or her minions, the residents and interns, have reported their findings to him or her and he or she now comes in to give you the actual answers to your questions and information that is accurate. Mind you, this is usually hours after you were first poked and prodded by the interns but they and the residents are in your room again now looking wide eyed at the Attending and nodding their heads in agreement of whatever he/she said. Bobble heads. Sometimes you’ll have a Fellow come by. A Fellow is helpful when they want to be. If they are particularly interested in your disease or condition then they are as good if not better than the Attending. Otherwise, they are just another doctor bothering your rest. Besides the doctors and non-doctors, you have the nurses, the aides, the housekeepers, the dietician, the chaplain, the social worker, the financial counselor, the transplant coordinator, the art therapist, the phlebotomist from the lab, the phlebotomist from the floor (when the lab one can’t find your vein), the respitory therapist and the psychologist. These people all come in and out whenever they need to. Oh, but don’t forget to rest! Ha!

Let me just say that Loyola has been overall wonderful. There have been some dingbats I’ve had to deal with, but overall I’ve been very happy. I do respect and appreciate the interns, residents, and fellows. I am an educator and I understand that learning is best done with hands on experience. It would be great though if they didn’t have to disturb the patient so often.

Finally we had a clear picture of what I had going on by mid week. I was FLT3 negative (yay), NPM1 positive (yay again) and the AML had spread to my CSF maybe. This put me in the intermediate risk category if the CSF was in fact infiltrated. If not, then I was in the Favorable risk category. Bottom line: I still had cancer. My life is forever changed. About whether the AML was actually in my CSF or not, that depended on which doctor or non-doctor you asked. Labs were never totally definiative but there was enough evidence there that I endured countless Lumbar Punctures over the next month in order to administer methotrexate directly into my spinal fluid. Before discharging me in late October, a neurosurgeon performed minor brain surgery to install a chemo pump under my scalp that has a tube that goes directly to the center of my brain. No more spinal taps. But...brain surgery...ICU stay and a frightening looking bubble on my head surrounded by 20 some stitches. Today, 3 years later, the pump is still in place and not noticeable under my wig. (What? Wig? Your hair didn’t return? Settle down. We’ll get to that story...). Thankfully, it hasn’t been used for 18 months. But its now a part of me since removing it is another brain surgery and more risky than just leaving it.

Speaking of new parts installed...I got a fancy schmancy PICC line. Basically its a long IV tube that goes in the upper arm and ends millimeters above your heart through your aorta. Cool huh? It can handle larger volumes of fluid than an IV and it has two lumens (lines) so I could get fluids and chemo or chemo and antibiotics or whatever combo at the same time. It’s also more permanent than an IV. My first one I had for well over 6 months. It had to be treated carefully. I couldn’t get it wet...just like Gizmo in Gremlins! Also, it had to be sterile since it was directly to my heart. I had a second one and then a Hickmann, but we’ll get to those later.

My treatment plan was Cytarabine and Idarubacin. I participated in a Phase III Clinical Trial and instead of the typical 7+3 regimen, I had Cytarabine round the clock for 4 days and Idarubicin once a day for 3 days. The treatment regimen was referred to as IA. Now, for those of you who aren’t familiar with all the treatment options for AML, I’ve probably bored you. I apologize. However, I want to be as helpful as I can to those who are experiencing AML and knowing what treatments other went though was something that I wanted to know.

The side effects were brutal. I’ll get into that more later. For now, it is time for bed.

Living on a Prayer

So there I was. It was Friday September 26, 2014. If you’ve been in a hospital on a weekend, you know that not a whole lot gets accomplished and major decisions rarely get made unless its an emergency. The bone marrow biopsy I had done at my local hospital wasn’t good enough for Loyola and they wanted to do another one. They told me I wouldn’t have an official diagnosis of what type of AML I had until Monday. My initial meeting with the team of doctors who would be saving my life was terrifying. I had so many questions and, up until this point in my life, no major health issues. I wanted to know how I ended up with cancer. Would it be painful? Would I have side effects from chemo? Would I be the same person when I went home? Would I even go home? Three questions seemed to be the most urgent to me. 1) Is this hereditary and would my boys be at risk? The doctors assured me that AML was not hereditary and my boys were not at a higher risk. That was the first sense of relief I’d felt in over a week. Finally, some positive news. 2) Would I survive? Will I be able to raise my sons and grow old with my husband? This was the most troubling question because, as i’ve learned, doctors will not give false hope. In actuality, they don’t seem to give any hope. Doctors give facts and figures and statistics because its backed by science. The statistics were disheartening. Something like a 65% survival rate is what I was told initially. 3) Can this be cured? Again, no hopeful answer from doctors. I prayed and prayed and prayed for hope, peace, comfort, help, answers and most of all survival. If I wasn’t sleeping or crying, I was praying. You’ll find this to be a common thread throughout this story. God was with me through all of this. I can’t wait to tell you how He worked things out for good in this hard situation. I couldn’t see any good in September of 2014 but truly there has been many blessings from this. Stick with me and you’ll see.

I couldn’t wrap my head around my situation. Frankly, I was still numb. Nothing made sense anymore. I wasn’t angry or scared but I was full of disbelief and everything felt surreal. It was like a horrible dream that I kept trying to wake up from. Since I couldn’t do much to help my medical situation, I did everything I could to be a mom to my boys without being home. I wrote lists and instructions and emailed them to Dan and his parents and my mom. I wrote about the boys’ routines, favorite foods, bedtime tricks, where to find things in our house and countless other “helpful” tips for whomever was caring for the boys. I also contacted some of Dan’s closest friends and asked them to please take care of Dan and check on him. I could handle what I was experiencing but I wanted everyone else to be ok too. I wanted my boys’ routine to be as normal as possible and Dan to be home with them as much as he could.

Although it was hard to sit with uncertainty in a hospital on a weekend, it was the first of many blessings God had for us. Because it was a weekend, childcare was not an immediate issue. We had a second to breath and think. Dan spent many hours that weekend with me but I also wanted him to spend a lot of time at home with the boys because I was very worried about them. What were they thinking? What were they feeling? Would they remember me if I died? Who will take care of them? Since Dan is a teacher, he had sick days built up and was able to use some to be with me. But we didn’t know what the future held and I wanted him to work as much as he could in case he needed to be with me later. At the time, I was stable and in good hands. My mom was with me a lot and friends visited. Dan’s parents and aunt and uncle lived 2 miles away from us and they went into full grandparent mode and took care of the boys day and night while I was away and Dan was trying to be a teacher, husband, father, and deal with all of the insurance and bills and doctors. At least I knew my boys were being loved and taken care of while I waited for further news about my future.

At this point, I need to give you some disclaimers. My main goal of writing this blog is to share my story with anyone who is experiencing AML or stem cell transplant themselves or as a caregiver. I promise to be as accurate as I can be. I promise to do my best to answer your questions if you contact me. I promise not to sugar coat anything. Nothing about this was fun or easy. Doctors like to say things like “its not that bad” or “its a quick procedure” but they’ve never experienced it first hand. I have. Some of my entries will not be in chronological order because honestly, I don’t remember what happened in what order. Many of my posts will be about the emotional side of AML but I will try my best to be informative about the physical experience as well. Finally, I am not a medical professional. Please do not take anything you read in this blog as medical advice. It is simply my story of my experience with AML. Every person is different as are treatments, reactions, genetic markers and subtypes of AML. I thank you for taking the time to read my story and I hope that it will be of some help. Oh, and I will do my best to update regularly! I’ve also made Dan an administrator of the blog so you may find some posts from him giving his perspective.

Keep Breathing

I had never seen my husband cry. Well, I'm pretty certain he teared up when we exchanged our vows but he says he didn't. We left Dr. Klein's office and walked to the car in silence. Neither of us knew what to say. Once we got to the car, he cried. Sobbed. It broke my heart and seemed to make this entire nightmare real. Up to that point, I was certain this was going to be a little blip on the radar and something that would be done quickly. After all, the doctor had said I'd only be at Loyola for 2 weeks. I saw it as a chance to catch up on some reading, rest and maybe watch something on TV other than Daniel Tiger or that godforsaken Caillou. I mean, I could use a break from diapers and sidewalk chalk. But when Dan cried, I realized how very real this was and that it wasn't anything easy. Dan doesn't cry easily and he's always been my strength and safety zone in my life. Here he was falling apart. My heart ached and my head was spinning. We had just a few hours to get things together, tell family and pack for the hospital. Loyola would be calling anytime in the next few hours to tell me they had a room ready for me. I didn't know when or if I would ever come home again.

I remember calling my mom and Dan calling his parents. His parents were at our house with the kids. Telling my mom was surreal. Isn't it supposed to be the other way around? A parent telling their adult child bad news about their health is common. I never expected to be telling my mom that I had cancer. I have no recollection of how she responded. I'm certain it was hard for her but I can't tell you what she said because I just don't know. Her life hasn't been easy and I felt bad adding another problem to her life. I remember thinking that I wouldn't have to ask her for help because she already had her hands full. I thought I wouldn't need help. Boy was I wrong. We made those phone calls from the car mostly because I had to tell someone. I had to make it real in my own head and telling someone did that for me. When we got home, I was mostly numb and my thoughts were racing. What do you pack for a 2 week stay in the hospital? I had no idea what I was in for. So I grabbed a notebook, a deck of cards, some books, my devotion book, comfy clothes, toothbrush and basic hygiene essentials. I figured anything else I needed, someone would bring me when I realized I needed it.

Then I had to tell the kids. Sean was 4, Ryan was 2 and Nolan had turned 1 just three weeks prior. What was I supposed to tell them? How do you explain to such young children that mommy was sick and had to go to the hospital and may not come home? I refused to say goodbye. All I could get out was "mommy is very sick and is going to lose all of her hair". Looking back now, I could've come up with something better but at the time, its all I had.

I continued to make phone calls. I called my dad. He left my mom and I when I was 6 and has made some pretty awful life choices since then. But, we've kept in touch despite having a pretty shallow relationship. Our conversations were few and far between and usually just about the weather, basic small talk and complaints about the Chicago Bears or Cubs, depending on the season. When I told him that I had leukemia, he was silent. He is never silent, always has a joke or complaint or comment. Then, for once, he was sincerely upset and concerned. I spoke with him more in the year that followed than I had in easily the past 20 years combined. Finally, I called my aunt and uncle. My one and only aunt and uncle lived in South Carolina. When I told my aunt, her response was "what? Say that again....". I could hear the crack in her voice as she asked me to repeat it. Disbelief. It's pretty much how we all felt. This couldn't be happening. But, it was.

Finally, the phone rang around dinner time. It was Loyola and I had to go. I said goodbye to my mother in law and father in law, my loyal Bailey dog, and somehow managed to tell my kids that I loved them very much and gave them hugs. Not knowing when or if I'd see them again was the hardest part of leaving. The unknown haunted me throughout this entire ordeal and still does today. Dan put my stuff in the car and we set off on the hour and a half long drive to Loyola. Turns out, it was the first of many many drives to Loyola we'd experience. At this point, all I knew was that I had AML and it wasn't good. In an effort to keep myself from falling apart, I focused on one goal: just keep breathing. I couldn't die if I just kept breathing.



This is what I was leaving behind. Three sweet boys and one incredible husband. The second picture is the last "normal" picture of me. I hardly recognize myself today.

I will remember you

It was a warm sunny day. My husband's grandmother had recently gone to heaven and we were still grieving the loss. I found it myself. I knew before any medical professional confirmed what Dr. Google had already told me. It started in June of 2014. We were on a family trip visiting my sister in law and her family in Nashville, TN. I remember thinking that I was really out of shape. At the time, I had a 4 year old, a 2 year old and a 9 month old. All boys. I'd been married for 9 years to the most amazing guy. Life was pretty good except for how terribly out of shape I felt. Being from the suburbs of Chicago and currently living in Northwest Indiana, I was not used to the hills in the subdivision that Kris and Eric lived in just outside of Nashville. We walked to the pool most days we were there and I remember being tired and out of breath. I chalked it up to not sleeping well and being overweight. That was June.


In July, I had a bump on the back of my head. Probably a bug bite, right? I was a busy mom and blew it off. It started to swell over several days and really hurt. I went to the doctor. My general practitioner at the time wasn't in the office so I had to go to her partner. He looked at the bump on my head and declared it to be a lymph node that was inflamed. I wasn't convinced because I didn't think that there were lymph nodes located in the scalp on the top of your head. But, he's the doctor, so I went with it. Besides, he gave me an antibiotic and it cleared up. Probably just an infected bug bite that got out of control because I was always so tired because I had three little boys that ran me ragged. That was July.


August begins with me realizing that my teaching and my guidance counselor licenses both were up for renewal and somehow I'd have to get those renewed while I was not actually working in a school setting since I was currently a stay at home mom. Well, God had my back. There was a new counselor at the high school I used to work at. Great! I could mentor her and get my hours for renewal. So most of August I was "working" and fighting a cold most of that time. It was a bad cold. I didn't get sick often but geez, this one was bad. One morning, after two solid weeks of long days at the high school, my neck was terribly painful. I literally could not turn my head. I figured it was because I'd been sitting in front of a computer adjusting students' schedules for several days. It cleared up eventually, but it was the worst muscle pain I'd ever had. Then my shoulder flared up. I'd had some pain in my shoulder for several months but it got extremely painful to the point where I could not raise my arm above my head. So, I went to the dr for the second time in two months. At this point, I'd only been with this doctor for about 2 years and had only seen her for annual physicals. So she was surprised that I was in a second time when her partner had seen me less than a month prior. She said my shoulder was likely sprained and that I shouldn't lift my children until it heals. Yeah. That was unlikely with three children ages 4 and younger. One wasn't even walking yet. That was August.


September begins and I'm still feeling tired, my shoulder hurts and this cold just will not go away. I'm going on 5 weeks of snot and cough and headaches. My husband's grandmother's health was declining rapidly and we knew it was only a matter of time before she would move on to a better place. She left us in mid September. I had just gone back to the doctor for a third time because of the cold that would not give up. She told me I just needed to rest and I was fatigued from being a mom of three young children. I was falling asleep on the sofa at 7pm every night with chills, headache and low grade fever. I wasn't just a "tired mom". I went back to the doctor's office two days later and had to see her partner again who finally decided it was time to do bloodwork. My mother in law was grieving the loss of her mother and was busy planning the funeral arrangements. The dr called me and asked me to come in for further bloodwork. I went right away. He (my dr's partner) told me that my blood "looked like something was going on". He said my "counts were off" but nothing too serious. So he did more bloodwork. Of course I asked for a print out of my results and went home and studied them. Low platelets, low neutrophils, high monocytes and a bunch of things I didn't know about yet. He didn't seem concerned so I tried not to be. The next round of results came in and still more things that weren't quite right. The doctor called for more tests and wanted some previous ones redone. That was the morning of my husband's grandmother's funeral. I already had a sinking feeling in my stomach and knew something was very wrong. I had asked the doctor if he felt that I had leukemia or lymphoma. He said "no, I do not think that is it". He said I was just very anemic. His advice was to set up an appointment with a hematologist to address the anemia. So I did. I had an appointment set up for late October because "it wasn't a serious matter". On the way to the funeral, I saw four billboards advertising a local hospital's cancer treatment center. It's an image that still haunts me. The word cancer seemed to be following me. It was as if God was telling me to pay attention. I sat in the church for the funeral service thinking about how my funeral would be the next one my family would be attending. I remember watching the casket be put into the hearse and sobbing not only for the loss of such a sweet person but also for the reality that I knew I'd be facing. It was the beginning of the hardest time of my life.

The next day, I looked at all of my blood test results online and started to do my own investigating. Maybe I had Mono. Maybe I had a vitamin deficiency. Surely it wasn't truly leukemia or lymphoma. After all, the doctor said it wasn't. I spent the day researching. I even messaged the doctor and asked him again if he felt it was leukemia or lymphoma. No. He felt I was too young and in to good of health. My husband and I went to bed and I decided to take one last look to see if I missed anything. Then I saw something at the bottom of the list of things in my blood. Auer Rods. Huh, I wonder what those are? Dr. Google to the rescue. Turns out that Auer Rods are only present in people that have Acute Myeloid Leukemia. My heart nearly stopped. It was 10:30 at night and I had just diagnosed myself with leukemia. I have two degrees. Neither are in medicine. How did the doctor miss this but I found it? I told Dan that I had leukemia. He wasn't convinced, but I knew. The next morning I called the hematologist that I had made that appointment with for late October. I told her nurse that my bloodwork needed to be looked at right now. The nurse called me back within half an hour and told me to go directly to the hospital for a bone marrow biopsy followed by an appointment with Dr. Klein. It was the first of 18 bone marrow biopsies I'd have over the next two years. As I waited in the waiting room in the dr office, I knew what I had but I had no idea what was going to come of all of it. My husband was in denial and wouldn't believe it until a doctor said it. Well, about an hour later, Dr. Klein said it. She looked at me and said "You have acute myeloid leukemia". I didn't even cry yet. I just asked "now what?". Honestly, I don't recall the exact order of events. Dr. Klein told me I had to chose where to receive treatment. I thought she meant that I had a few days to consider it. No, I had to chose then. Right then. Rush or University of Chicago or NOrthwestern or Loyola. My eyes filled with tears and I asked her where she would go. She said "Loyola". So that's what I chose. Dan left the room to call insurance and start his long road of dealing with them. I sat on the exam table and sobbed. Dr. Klein hugged me and said Loyola was going to do everything those doctors could to help me. My only question for her was "Am I going to die"?" And she responded with 'I hope not". I thanked her for getting me in to see her so fast and asked if I would still be working with her. Her final words to me that day were "I will remember you".