The Diagnosis

If someone would have told me as a teenager or in my 20s that I would be walking into a place like Columbia Basin Hematology and Oncology as a patient for the first time at age 34 I would have laughed in their face.  How is that even possible?  Only old people get cancer, right?!?!  But no, here was the harsh reality striking me in the face, I walked into CBHO in Kennewick on Wednesday morning, May 30, 2012 as a cancer patient for the first time.  My test results were in and after approximately 16-18 different special stains on my tissue samples revealing practically nothing, they finally achieved a diagnosis using something called a FISH assay at a specialty pathology lab in Seattle.  This test detected a very particular cell mutation called a translocation between chromosomes 22 and 11 which fuses the EWS gene to the FLI1 gene, causing those cells to start growing out of control and suddenly we have a very aggressive tumor on our hands called Ewing's Sarcoma.  I was about as atypical of a signalment for a Ewing's patient as you could get.   This is a cancer found most commonly in children, usually pre-teens and teens, and males are more commonly diagnosed than females.  It is also typically a primary bone tumor, with primary soft tissue tumors only found in about 20-30% of cases depending on which source you read.   So not only is it extremely rare to have someone diagnosed with this cancer over the age of 30, it is also rare for it to be found only in the soft tissues and no bone involvement.  And here I was, a 34 year old PREGNANT female with a primary soft tissue tumor diagnosed as a Ewing's Sarcoma.  I have no doubt that I was likely the ONLY person in the USA diagnosed that year with that signalment.  I was only the 4th Ewing's patient Dr. Rado had ever treated in his 4 decades of experience in oncology, and the only one who had ever been pregnant at diagnosis.

The Surgery

On Valentines' Day 2012 I was a few days late for my period but didn't think much of it at the time.  I was at the store that day so on a whim I picked up a pregnancy test, thinking there was no possible way I could be pregnant so fast and it would surely be negative.  To my utter shock it was of course positive and I waited until that evening when Eric got home from work to tell him.  I broke the news in his Valentines card!  That ended up being one of the best Valentine's days yet for us.  I had my first appointment with my OB, Dr. Lorenzo a couple weeks later where the pregnancy was confirmed and measured, I was about 7 weeks I believe at that first visit.  Within a week of the first OB visit I was in the shower and noticed a very tiny firm lump, smaller than a pea, under my skin over my sternum just to the left of midline.  I didn't think much of it but made sure to make a mental note to ask the doctor the next time I saw him, which was about 2-3 weeks later.  I didn't make an appointment with my GP because I figured I was already going to see the OB regularly from this point on so I would just ask him.  The lump was still there when I went back in to see Dr. Lorenzo for my next appointment so I pointed it out to him during the exam.  He didn't just blow it off as some may have done but said, "I really don't know what that is but it's unusual enough that I'll set you up with a referral to a surgeon to have a consult."  I had a breast lump that had been there for many years and had caused me some problems with mastitis with previous breastfeeding so we decided it would be best to go see a breast surgeon who could take both things out at once if needed.  In late March I went to see Dr. Evans in Pasco.  She looked over my records and ultrasounded both lumps.  She concurred with previous assessments about the breast lump that it was what they sometimes call an "oil cyst".  The other lump she assured me was just a sebaceous cyst, something that dogs get all the time so I breathed a huge sigh of relief, for as a Veterinarian I deal with those benign lumps all the time and knew they were no big deal at all.  But she said that sometimes they do rupture and since my lump was slowly but steadily growing she was afraid mine would be one that would eventually rupture so she offered me the chance to just have it removed.  I thought that was a good idea but since I was still in my first trimester and because it was just a "cyst" there was no hurry to take it off.  We decided to wait until I was well into the second trimester to make anesthesia easier on the fetus I was carrying.  On 5/15/12 we had our first official ultrasound at Dr. Lorenzo's office and we found out that our last baby was going to be a boy!  I was so happy and I know Eric was quite happy that he was finally getting his son.
Surgery was scheduled at Lourdes Medical Center, the hospital Dr. Evans works with, for 5/17/12.  That is a date I will never forget.  I was 17 weeks pregnant at the time.  It was a relatively simple outpatient procedure and I was supposed to be done and out the door by 11 am.  I would be very woozy though so Eric took the day off work and came with me to the hospital for the surgery.  The plan was to remove the subcutaneous lump over my sternum as well as the oil cyst in my breast, surgeon said I'd be under for 20-30 minutes tops.  I saw the Propofol flowing into my IV in the operating room and then the next thing I remember was waking up in the recovery room with Eric by my side.  I vaguely remember asking him what time it was and when he told me it was over an hour that I had been in surgery so I thought something must have gone wrong.  The nurse assured me that the baby was ok and they had a fetal monitor on me so I could hear the heartbeat and that was reassuring.  Shortly after that Dr. Evans came in and even though I was still VERY groggy from the anesthesia I clearly remember her saying, "So that lump on your sternum was not a cyst.  We sent it off to the pathologist before taking out the breast mass and they told us that it was a solid mass with signs of malignancy.  I went back in after taking out the breast lump and took wider margins over your sternum and that's why surgery took longer than expected.  We'll submit all the tissue and hopefully get an answer in a few days about what kind of mass it is."   I was completely numb with shock at what I was hearing.  I've had lots of education, including 4 years of veterinary medical school, and 7 years of practice experience up to that point.  I know that when a pathologist says "signs of malignancy" that it can never be a good thing.  My mind started racing with all sorts of possibilities of what it might be, none of them good.  And then I thought about my small fetus.  That morning I thought that general anesthesia for surgery would be the only obstacle the baby would have to face, but now I started thinking about what if this is a bad Cancer, how can the baby possibly survive?!?
I called Dr. Evan's office every other day for 2 weeks after the surgery and I'm sure she was getting really annoyed at me.  She would tell me the answer each time, "We don't have definitive results yet and I don't want to make any speculations on what it might be so that I don't scare you unnecessarily.  Our local pathologist couldn't get a diagnosis so we've sent all the samples and slides to Seattle for more special stains and testing."  Unfortunately I was doing a pretty great job of scaring myself unnecessarily all on my own.  That was the most nerve-wracking tortuous 2 weeks of my life.  The not knowing, the wild speculations of how bad it might be, were driving me crazy.   Then finally on a Tuesday Dr. Evans called me and said, "We have a diagnosis but I don't want to discuss it over the phone.  I've set you up an appointment with an oncologist, Dr. Thomas Rado at Columbia Basin Hematology and Oncology for Wednesday morning, you need to be there.  Someone from their office will be calling you to get your information and give you instructions."  I hung up the phone from that conversation and broke down in tears for the first time.  I knew it had to be bad if she wouldn't talk about it on the phone, and especially because now I was going to see an Oncologist.   I was so very frustrated that I still didn't know, even though she had the answer in front of her when she was talking to me on the phone.  And I was also terrified that it was an aggressive cancer that would make me lose my son or leave my girls to grow up without a mother.  All I had to do the rest of that day was wait for whatever tomorrow would bring, at least I'd have an answer soon.

About ready to go into surgery at Lourdes Medical Center in Pasco.

The lump right before surgery

The Journey Begins

The beginning of my story does not occur the day of my cancer diagnosis but I'd have to say was many months before that.  Our third baby girl was born early in 2011 and was a perfect beautiful little baby in every way.  We were so happy with our growing little family and my husband felt that we were done having children but I kept having a nagging feeling we had one more member that hadn't joined us yet.  We weren't getting any younger and I knew I wouldn't want to wait very long to start trying again, especially given the fact that it took us over 6 months to get pregnant with our third.  When she was 9 months old I decided to bring up the topic again to my husband.  Once again we were at an impasse.  He wanted a vasectomy and I wanted to try one more time.  I had been convinced for some time now that if we had a 4th child it would be a boy.  He thought I was crazy.  I couldn't explain it, just a feeling I had.  We decided this was a decision that was larger than us and we needed to take it to our Heavenly Father in prayer and meditation.  We made the decision to go to the temple (for my non-LDS friends, that is our most sacred of worship sites and where we can feel the closest to the Spirit and receive divine guidance and comfort).  We don't get to the temple nearly as often as we would like due to work and family obligations.  It's hard to go on a date night more than twice a year let alone make it to the temple every month, it just doesn't happen.  But this was a particularly important time for us and we made it happen.  After we finished our temple session and were sitting quietly together in the celestial room I was praying hard for an answer and I'm sure Eric was too.
It was a significant experience for me so I shared it with my Mom and sister later that day.  Here is an excerpt of what I wrote in an e-mail right after it happened:

"We've been really struggling with the decision on whether or not to try for a 4th child for the last month
or so and I decided to really pray about it and try to seek an answer at the temple. I knew the answer might be no and I had come to accept the fact that we probably would only have 3 kids, but I wanted some
direction. We went through the session and I made it into the celestial room first and had about 10 minutes in
there alone before Eric came though. I began to feel very strongly that I needed to leave this major decision up to Eric and the still small voice said to me "He needs to win more". The question wasn't really answered for me but I instead got the very strong impression that Eric really needed to make the decision. I was crying by the time Eric came through with a huge mix of emotions as I was convinced this meant the end of our chances for another child and I was preparing to accept his choice whatever that may be. We sat together reverently for a while and the first words he said to me were "I want to try for a 4th kid". I was really shocked, that was the opposite of what I expected to hear but he was sure. I asked him later when he changed his mind and he said when he first walked into the celestial room. So I truly believe the spirit speaks to us, as long as we are open to accepting whatever the answer, even if it isn't exactly how we expected it to be answered."

We made the decision in the car on the way home that we would start trying that month, thinking it might take up to a year to get pregnant since it was a bit of a struggle the last time.  The Lord had other plans for us however, as I have learned time and again through all of this.  I was pregnant within 2 weeks of that temple visit.  I was still breastfeeding my 10 month old baby and had only had one cycle so thought for sure it would take longer, but that one cycle was all it took.  Little Luke was on his way and all because of that fateful day in the temple and the quiet meditation in the celestial room and the whispering of the spirit that we were not done and had one more soul that needed to join our family.

New journey!

I've decided to start documenting my journey that started a little less than 2 years ago.  When I was going through it I barely had the mental energy to get through each day let alone put any thoughts down in writing.  Now that I have a bit larger capacity for functional thought I'll give this a go.  I was diagnosed with Ewing's Sarcoma in May 2012 when I was 4 months pregnant.  More on that later, but that is the impetus for this blog.  I learned a great deal and had fantastic experiences along with the obvious horrible ones that every cancer patient has to deal with.  I'll try to put into words both the good and the bad.  I do this mostly for the sake of my children who were all too young to really understand what was going on at the time.  I hope they can read this when they are grown and appreciate what we all went through in 2012-2013, especially my youngest boy, who was intimately involved through the whole thing, though he'll hopefully have no lasting memory of that terrible time.