ER round 2 and an unexpected diagnosis

Where to start with this one...that is the question.  First of all being home the last couple of weeks has been wonderful despite yet more surprises that have come up.  If you recall I was discharged from my last stay at the Huntsmans on August 30th.  A week and a day later Cliff and I had a play that we were going to that evening.  My parents always come and watch our son for us on our play nights so that was they day they brought him home to us as we had them keep him for a few days after the two of us came home so we could get our house straightened up and put back together.

As luck would have it we didn't end up making it to our play that night.  We had met my parents and our son at Chili's for an early dinner when my mom realized my right arm had swollen to about double the size of my left arm.  My upper right arm had been very sore for 4 days at that point but as it had only been sore I hadn't thought much of it other than me possibly having done something to a muscle.  When we realized it had gotten that swollen in a matter of hours - we're positive it wasn't swollen that morning/early afternoon - I decided to call the on-call doctor at the Huntsmans to see what they thought it could be.  Turns out that pain plus swelling plus skin being warm to the touch are indicators of a blood clots.  Needless to say the doctor said I should go to an ER and tell them they suspected a blood clot and ask for an ultrasound of that arm.

So, off to the ER we went to do just that. After saying exactly what that doctor told me to say and telling the ER nurse and doctor everything I've had happen this year health wise they quickly got to work getting labs run and I was back getting an ultrasound done of my arm about an hour or so after walking through the door. As we've come to expect, my body opted for another surprise twist in not having just one blood clot but 3.  I had 2 DVTs (blood clots) in my upper arm and a smaller blood clot in my lower arm.  After discovering that the doctor sent me back for a CT scan of my chest to make sure I didn't have any blood clots that had gone to my lungs.  Thankfully that scan came back negative for blood clots so we were able to go home that night.  I just have to take a blood thinner for a month - and most likely will be kept on one moving forward as I am apparently more prone to getting blood clots.

The next day around 11:30am I got a call from Dr K - the oncologist who was doing my chemotherapy.  She asked how I was feeling and me assuming that the on-call doctor must have noted in the system that I had called and likely had a blood clot told her that I felt better even after just taking one dose of the blood thinner.  Dr K was confused and explained she was calling for a different reason but that I should explain why I was taking a blood thinner.  After catching her up she said she had what she considered good news for me and proceeded to say that they officially had a diagnosis for me after having sent everything from my surgeries to a doctor at the University of Pennsylvania. 

This doctor there has become known for being able to diagnose the more difficult to diagnose cases of cancer and his consensus was that I have Sarcoma cancer.  The pathologists at the Huntsmans reviewed the reports he sent back and all agreed with him.  So, now that we know what type of cancer I have everything changes moving forward.  I have a new oncologist - Dr F - who Cliff and I were able to meet with yesterday (Wednesday).  We both really liked her and she seems very knowledgeable in the type of chemotherapy I will be switching to - one that specifically targets soft tissue sarcoma cancer which is the general type of sarcoma that I have.

Before diving into what my treatment will look like for the next good while I'll explain what sarcoma is.  Sarcoma cancer is one that starts in either bones or in connective tissues- muscles, ligaments, etc.  In the U.S. each year there are approximately 3,000 cases of bone sarcomas and approximately12,000 cases of soft tissue sarcomas.  It is one of the more rare types of cancers already and there are 100 subtypes of sarcoma cancer.  My cancer started in the stroma which as it was explained to us is a deeper layer of muscles.  It is believed that mine started in a muscle near my right ovary and in yet another surprise where my cancer started makes my cancer "ultra rare".  My body is still going along with the unique stage of being that it has been in since last December. 

On a quick side note before moving on - my cyst that started my whirlwind of a health journey back in December is also very rare.  After multiple pathology teams did research for 6 months they found 18 other reported cases of my exact type of cyst.  The brief description of the cysts from those 18 cases was almost an exact copy & paste, word for word, replica of the pathology report I was given after the first attempt at removing the cyst.  All 18 cases were in females with 9 of the cysts being benign and 9 being malignant.  So, I was 1 of 19 as far as my cyst was concerned.

Now back to what treatment will look like for me moving forward.  After having a day to process everything I had a slight breakdown this afternoon because it is all a bit overwhelming.  But, Cliff reminded me that we can get through it and things will work out.  As my cancer is ultra rare and is very aggressive- it has been classified as being Stage 4 - the chemotherapy treatment I am being put on is equally as aggressive in the hopes that my cancer can be slowed down and with any luck shrunken as well.  I will go through 4 to 6 cycles of this chemotherapy - the name of it is  Adriamycin/Ifosfamide or A.I for short - with a cycle being every 3 weeks.  In week 1 I will be admitted to the Huntsmans as this specific kind of chemotherapy is administered slowly over the course of 5 days.  Week 2 I will be at home but it is called Danger Week as my white blood cell count and red blood cell count will be 0 (due to the chemotherapy) so even a slight fever during that week would be considered an emergency.  Week 3 is recovery week at which point both my WBC and RBC counts should have gone back up to normal.  On Monday, Wednesday, and Friday of both weeks 2 and 3 I will have labs scheduled - so they can check my blood levels and such - but once my levels stabilize all remaining appointments for that will be canceled. 

After either 4 to 6 cycles of the A.I chemotherapy as of now the plan is to switch me over to a different kind of chemotherapy with the hopes of maintaining things wherever they are after the 4-6 cycles of the more aggressive treatment. At that point the chemotherapy would be given as an outpatient so I'd only have to be at the hospital for 4-6 hours versus being admitted for a week.  Needless to say I'm sure the rest of this year will continue to seem like a whirlwind.  Thankfully at least the appointments to check my blood counts can be done at their clinic in South Jordan so I don't have to drive all the way into the main hospital in Salt Lake 3 times a week for that. Depending on what future scans show at any given time it could be recommended that I do another 4 to 6 rounds of the A.I chemotherapy.

My main concern as far as the labs go is what to do with our 2 year old for those times.  Cliff will be switching to working 4 ten hour days this next week so he will have Wednesdays off so at least that day is covered. The biggest problem is that the times for my labs are all over the place from first thing in the morning to late afternoon just depending on what openings they have at the clinic.  But, as Cliff said it will all work out and Dr F alluded to the fact that most patients don't need more than 3 or 4 labs run before the blood cell counts are normal again. So, I'll hope that is the case for me as well. 

My first cycle begins this coming Monday and at least this for this first round of chemo it looks like I will most likely be in the hospital until the following Sunday so they can monitor how I react to the chemo for a couple of days after it is administered.  I'm hoping I'll be able to be discharge on Fridays or Saturdays the other cycles so it's one or two less days that I'm away from my husband and son.  As far as I know visitor's will be welcome- though no kids under the age of 8 (if memory serves me at all) - but if you choose to come visit let me know first in case that changes at all.  It's not something I specifically asked Dr F about as it was information overload when we met with her but since she only specifically suggested staying away from people as much as possible during week 2 of each cycle I'll still go ahead and assume visitors are fine in the hospital as long as you are healthy yourself and haven't been around others who have been sick.

Prayers that the first round of the new chemo will go well and that my body will react well to it would be appreciated.  Also, any book and podcast recommendations would be welcome as well as I'll have a lot of alone time to fill throughout the week.

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“If we constantly focus only on the stones in our mortal path, we will almost surely miss the beautiful flower or cool stream provided by the loving Father who outlined our journey. Each day can bring more joy than sorrow when our mortal and spiritual eyes are open to God’s goodness. Joy in the gospel is not something that begins only in the next life. It is our privilege now, this very day. We must never allow our burdens to obscure our blessings. There will always be more blessings than burdens – even if some days it doesn’t seem so. Jesus said, “I am come that they might have life, and that they might have it more abundantly.” Enjoy those blessings right now. They are yours and always will be.”

*Elder Jeffrey R. Holland