An Update on Why I’ve Been Quiet in This Facets of Joy space – my MDS diagnosis

Gosh, my most recent post was written on November 2, 2018…..and I don’t want to just leave my blog or my readers (you) like that.

Many of you follow me on social media, so you might already know what I’m going to share, but many of you don’t and this is for whomever is interested.

On November 19, 2018, I had an odd feeling that I was going to faint while I was out and around. So odd, that I texted a few friends to see if anyone could pick me up. So odd, that while waiting for two friends to pick me up, I decided to call 911 and request an ambulance.

Which turned out to be more wise than I can express, because I was hospitalized for three days, given a blood transfusion and referred to an oncologist (all surprising!, completely unexpected!).

The week before Christmas, so around December 18th, I was diagnosed with MDS, which in the most simplest description is a blood cancer. That’s how fast my life changed. In November, I was doing well, settling back into So Ca, then bam! hospitalized and diagnosed and in treatment.

My counts were so critically low, I was diagnosed as high risk. Treatment was to start right away, but it was a holiday season when most businesses are closed for a few days in there….and the infusion center follows business hours, so they held off beginning treatment until January 2nd.

I opened this new year of 2019 with a seven-day cycle of chemo, followed by almost weekly blood transfusions. It was scary, confusing, incredibly life-changing, and my main priority was to trust my oncologist (she says her job was, and is, to keep me alive, so I trust her intention), go through treatment and to spend as much time with my kids as possible.

Because of the start date of chemo, I open each new month with a seven-day cycle of chemo, and lots of labs to see if I need a blood transfusion. Not the most joyful way to open a new month, but it is what it is, currently. I’ve also been on three antibiotics for a little over a month, because getting any kind of infection can be deadly (since my body can’t fight it naturally).

With MDS, my body makes deformed bone marrow, and also not enough red blood cells, white blood cells or platelets.

My main symptoms are: not being able to breathe well (due to low red blood cell counts), my blood doesn’t clot (so I have to be super cautious about not getting any type of cut), my immune system is severely compromised (so I can’t get any type of infection). I tire easily, and it has nothing to do with whether or not I’ve done any type of physical activity.

Because my counts are so low, I’m on chemo, and my immune system is compromised, I have long lists of food I can’t eat (some of my favorites like salad and sushi!), places I can’t go (umm…pretty much anywhere in public, for real), and things I can’t do (pretty much everything).

For most of January and February, I was processing these changes, going to and recovering from chemo and my myriad of medical appointments, and doing inner work to try to balance this all out. It was very much about survival.

At the end of February, beginning of March, my counts stabilized above the transfusion parameters. yay! Which shows chemo is working and means I hadn’t had a blood transfusion for quite a few weeks. However….the only (western medicine) cure for MDS is a bone marrow transplant. My current treatment plan is about boosting my counts above critical, and stopping cancer blasts from growing. There isn’t a way to grow new, healthy bone marrow cells, without a bone marrow transplant.

Lots of people ask how long I will need to do chemo. As long as it’s working, or until I get a bone marrow transplant. Statistics show that the effects of chemo plateau after a bit, so I likely have a few more months of it working, then the treatment plan changes (and hopefully my counts hold steady!).

Bone marrow transplants are not done locally, the closest city to me is Los Angeles. I met with my potential bone marrow transplant team (at Cedars-Sinai) on January 24th, and was told by the transplant doctor my numbers were so low I needed a transplant by mid-February. Since January 24th, that team hasn’t even completed step one, which is to type my bone marrow, and that ‘dropping the ball’ is a really big deal. If I was accepted for a transplant (meaning they did all of the steps and it was determined that my body could handle a transplant), I would be in the hospital for 6-8 weeks, then a sterile environment for 100-days.

If I’m not accepted for a transplant, well…..hmm…..my local oncologist would continue with a treatment plan, and I’m told my life span would be months. (Since November, I keep being told how short my life span is, but I’m still here, and so grateful and I just keep doing my inner work and letting source energy flow through.)

So, that’s the gist.

If you’d like to follow along with my medical journey, I’ve set up a CaringBridge account, that I write on, and that my children and a few friends have access to if the time comes that I can’t give updates.

I’m not sure what I’ll do with this Facets space, or my Facets offerings, moving forward. Everything in life is paused, so I can focus on recovering, healing. I’m just now feeling like I have enough space and breathing room (for real!, in all ways!) to do some of these ‘regular’ things….like write, I love writing!

Logistically, this pausing everything is not sustainable. I obviously am not working, or generating income. I don’t currently drive. I am researching and advocating (quite strongly) for myself. I don’t have caregiving help for the hard days (and some days that’s really needed!). I currently live about 40 minutes from my oncologist’s office. I want to move (living spaces) but I can’t actually until I know the logistics of where my transplant might be, if I’m getting one. I’ve just begun researching other hospitals that do transplants and take my insurance, and it looks like I’d have to move a few hours north or south in our state, if I was accepted at one.

I’m learning to lean-into the pause. I’m very much appreciating the gift of this moment. I still look around to see and celebrate light, beauty, sunsets, magical moments, compassion, love. I’m glad for my practice of presence to unfolding, because centering and trusting (in source energy, in the flow of things, in seasons of life, that all of this change is temporary and will unfold to something different on its own and also with guided intention) brings so much peace, and even joy, right alongside all of the other feelings.

Most of you have been with me through the years I’ve created through this blog, and some of you have been with me far before then, from my previous blog, and even the one I wrote on the boat. So, I thought you should know.  Thank you so much for your presence.

Blessings and love all around!!

Much peace,

Joy

 

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