The Journey Begins

Thanks for joining me!

Good company in a journey makes the way seem shorter. — Izaak Walton

Well, it is hard to say when this all began….this cancer journey.  In the summer of 2015, I had a hysterectomy because I had a large benign (so they told me) tumor in my uterus.  While I was in surgery, the ob/gyn thought my appendix looked funny, so she removed it.  The following week I was told that the large fibroid in my uterus was benign but the marble sized tumor in my appendix was not.  They labelled it a “carcinoid” which meant it had cancer-like properties.  I was referred off-base to a surgeon at Nebraska Medicine.  He said we needed to make sure it hadn’t spread any further, so less than 6 weeks later, he went in and removed half of my colon and the lymph nodes attached to it. I don’t really recommend having 2 major abdominal surgeries less than 6 weeks apart.  I felt like I had been hit by a mack truck after the second one.  Everything came back clean and after several follow up appointments, I was given a clean bill of health and discharged from his care.

Fast forward to October 11, 2019.  I am an avid kickboxer. I had been attending classes 5 days a week at 0530 for an hour.  One of those days that week, I was laying on my stomach (no, not trying not to die, but in between burpees) and I felt a mass in my stomach laying on the hard mat.  It felt similar to when I had the fibroid in my uterus.  But now without a uterus, I was pretty concerned.  Rich was out of town, so when he returned I told him and he made be call the doctor on the base right away.  He didn’t have any appointments for the next week or so, so his nurse told me that with my history, I should go to the nearest Emergency Room.  I ended up at Bergan Mercy here in Omaha.  I was actually seen by a PA that I used to work out with at D1.  After many scans and tests, I was told they had found several large masses in my pelvis, a spot on my lung and a spot on my bone in my hip. We were obviously devasted.  They wanted to admit me right away to run tests, but as it was Friday afternoon, one of the doctors who came in to see me decided there was nothing they could really do over the weekend and I might as well be at home.  I was sent home with an appointmet to following Tuesday with a new gynecological surgeon who specialized in difficult surgeries.  The boys and Michelle came home that weekend.  I was a mess.  I had no idea how bad it really was.  I saw the surgeon and he was really wonderful and meticulous.  I started getting all sorts of scans done so he could go in and get out these tumors.  Surgery was set for Nov 1st.  When I woke up, Rich told me the surgeon wasn’t able to get the larger tumor because it was embedded in my pelvis, stuck to other organs and highly vascularized.  He told me if he would have tried to take it out, the chances were pretty high I would have bled out on the table…or received massive transfusions and spent 2 months in the ICU recovering….if I was able. So he took out a tumor the size of a softball, my right ovary, and my omentum.  I was on the post partum ward for my recovery, so everyone had a sign on their door with a stork on it that had a bundle that said, “It’s a Girl!” or “It’s a Boy!”  I felt left out so my very artistic daughter made a replica for me that said, “It’s a Tumor!”.  Everyone thought it was funny except for a resident without a sense of humor who came in the last morning to discharge me.  I could hear her outside my room hissing to the nurses within earshot, “Who put this up here? This is inappropriate!” Ah well, you have to keep your sense of humor.

On Veteran’s Day, Nov 11th, I was told that the pathology results came back with me having leiomyosarcoma.  It is a rare and aggressive cancer.  Like 10 people in a million are diagnosed with it rare.  I started immediately looking it up online. Bad idea.  I was devastated.  Rich came home and found me bawling at the computer, convinced I only had about 2-3 years to live.  Then I noticed he was kind of upset as well….he had come home to tell me that our dog of nearly 12 years had had a massive heart attack at the vet’s office and had died. I have to say, that was the darkest day for me.  My border collie, Kona, who I had kissed that morning before she left for the vet’s office, was my steady companion in life.  To know she was no longer there gutted me.  Within 3 -4 days, I knew I couldn’t stay at home and fight this fight without another being with me.  I didn’t realize how much I talked to Kona until it was deathly silent at my house.  We went to the Nebraska Humane Society late that week and left with an Australian Cattle Dog, a Red Heeler, which we renamed Tallinn.  (all of our dogs have had names of places we have visited and loved).  Tallinn is a bundle of energy and a pure bred ACD.  He is smart and about 1 1/2 years old now.  That is their best guestimate.  He loves to play with balls and chew bones and to snuggle.  I sat down on the floor at the NHS and he sat on my lap and tucked his head into my neck.  Then he did the same thing to Lily.  He has been a fabulous therapy dog.  It is so sad to not have Kona around anymore, but we would have never found this little guy if she were still around.  It’s a God thing. I am convinced.

Back to me….I got even more scans after I healed from the surgery.  I had a bone biopsy on my L2 vertebra, because there was a suspicious spot found on it.  Don’t recommend that procedure to anyone. I literally had PTSD afterwards because I was awake through the procedure. There was a reason they didn’t tell me about the procedure until I was already in the room.  Imagine being strapped down to a metal narrow table in a CT scanning room on your stomach, and having an 11 gauge needle hammered into your spine.  Yep. Never doing that again. Ever.  So we finally got all the test results in and had a big meeting with the surgeon, the chemo dr, and the radiologist.  I was told I had a 1.1 cm spot on my right lower lobe of my lung that they would assume is cancer (leiomyosarcoma likes to send mets to the lungs – it is very common to have several), the bone biopsy came back positive for LMS, and then there was that big tumor in my pelvis…. So I was categorized as being Stage IV uLMS. (the u standing for uterine – even though I don’t have a uterus). The spot on my hip that they mentioned in the ER has never been found again….so that is good.  I had been tattooed (just little black dots) on my hips and back for radiation treatments, which was what we first thought we would do) but they decided since I was stage IV and had it in other parts of my body, to start out with chemotherapy.  So in December, I started with Gem/Tax.  It was a 21 day cycle. Gem on day 1 (Tuesday for me ) and then Gem/Tax on day 8 (the next Tuesday).  I got a Neulasta injection on day 9 to stimulate my white blood cell count and then I would have a week off and come back on day 22 (which is actually day 1).  So I got a port surgically placed in my chest about a week after the bone biopsy and got to fighting this beast.

I managed 3 rounds of Gem/Tax.  It wasn’t awful, but it wasn’t any fun either.  I am lucky enough to work at home and was able to find a few hours a day that I felt good enough to sit at the computer and do what I needed to get done.  I quickly lost my sense of taste.  It is really weird eating a kosher dill pickle and only feeling the texture of it in your mouth and not tasting it.  Or eating salsa and knowing it must be hot because my lips were burning and my nose was running, but I couldn’t taste it.  I craved crunchy food at that time.  The texture difference was great.  Even water tasted weird and I had to drink a lot of water!  I am still trying to manage 2 1/2 to 3 liters a day.  I also developed peripheral neuropathy in my fingers and toes.  They were just numb and got cold really fast.  In the Nebraska winter, that was everytime I went outside.

I had two complications.  I started getting short of breath during the beginning of the second round of chemo.  It kept getting marked worse.  I mentioned it to the chemo doctor, who told me I was out of shape and needed to get out and walk more. He also had me get a pulse oximeter to measure the oxygen in my system on room air.  I could never get it higher than 94%. It got progressively worse as treatment went on.  I also started having fevers and chills.  The chills would last for an hour, then my fever would break with the help of Tylenol and ibuprofen.  Then I would sweat profusely as my fever would break.  It was so bad that I would have to get up in the middle of the night and change my pajamas because I was soaking wet.  Again, I mentioned this to my chemo doctor.  He seemed to think the chemo was putting me into perimenapause.  He told me I was having hot flashes.  So I got a thermometer and took my temperature 6-8 times a day.  I finally put my foot down and asked him to look at my labs (which are done every week).  My WBC count was consistently high.  I was being overdosed on the Neulasta shot….which is a time released shot.  It was kicking in right away the first 4 days (fever, chills, sweats, and horrible joint and bone pain).  Then I would have a reprieve for about 5 days then it would come back full force again.  After noting this for two rounds, I brought it up again.  This time he listened to me and we went to Granix shots every other day.  That was pretty miserable as it is not time released.  I had to go to the cancer center every other day to get these shots in my arms that left big bruises…and I don’t bruise easily.  The joint and bone pain was really really bad. But the fevers and chills went away.  The Granix was 1/2 the dosage of the Neulasta.  By the time it came time for the 5th granix shot, I was starting to have fevers and chills again.  I knew I didn’t need that last shot.  Sure enough, I went in and asked to see the doctor.  He did my labs and my WBC was very high.  He cancelled the shot. At the same time, I mentioned that my breathing was really really labored. I would get winded from walking 10 feet.  It was awful.  He ordered a CT of my chest to make sure that I didn’t have a pulmonary embolism.  I felt this was highly unlikely since I had been complaining of shortness of breath for over 6 weeks at the time. The scan came back and my lungs were a mess.  Pneumonitis….kind of like a chemo pneumonia.  He looked at me and said, “You weren’t imagining things.” I was livid.  Not being able to breathe is not something I take lightly. I was put in to see a pulmonologist that day. He was pretty close to putting me in the hospital.  If he had realized that the medical technician kept the pulse oximeter on my finger for 5 mintues to get a better reading, things might have been different.  I had been sitting for over 30 minutes and my O2 on room air was in the 80’s.  That is not good.  Everytime I tried to take a deeper breath, I would cough. I felt like I was only using about 20% of my lung capacity. My heart was racing because I couldn’t breathe.  I had been sitting there for 30 minutes and my pulse was high 120’s.  It was a vicious cycle….my heart was racing because I couldn’t breathe.  I couldn’t breathe and so my heart was racing.  I was put on high does steroids for  a month and taken off the Gem/Tax.

When I came back in to see my chemo doctor, I let him know that I was going to take this time to seek a 2nd opinion, specifically from a sarcoma specialist.  He recommended a friend of his at the Mayo Clinic in Rochester, MN.  I will be seeing him soon.  In the meanwhile, I can breathe again, my regimen of steroids is done.  I have been off chemo for 6 weeks so I am feeling better.  It was time for me to get re-scanned and I have.  I met with my surgeon and although the pelvic tumor has shrunk some, it has not shrunk enough for him to warrant doing surgery yet. On to the next thing!


2 thoughts on “The Journey Begins

  1. You did a wonderful job summarizing everything. You are so strong and smart. I am so sorry about everything. Needles in the spine and not being able to breathe are two horrors of mine too. Please know I think about you and pray for you every day. 🤟🙏


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