The waiting game

Before I update what’s been going on during the past 24 hours, I want to thank everyone who has reached out to me, started saying tehillim, organized learning, done a good deed for my refuah, etc. The incredible support I’ve been getting from so many people – past and present, friends and family – has been overwhelming. I appreciate you all, your support is uplifting.

The past 24 hours has been exhausting and busy. Last night, after getting preliminary reports from my PET CT, I left my husband to deal with dinner and I went to the Mikvah. This was my first Mikvah experience since my diagnosis and it was very, very difficult. After immersing in the waters, I just cried and cried while the Balanit kept telling me it was going to be okay.

How is this okay?

I didn’t sleep last night. Truth be told, closing my eyes is scary. So I spent the night wandering around the house, checking in on the kids and Gaby. I had an 8:15 a.m. appointment with my oncologist at Shaare Tzedek this morning and my anxiety levels were through the roof. I was up and moving well before my alarm rang at 6:00 a.m., and we managed to get all the kids off to school by 7:30 a.m.

The oncology ward at Shaare Tzedek was already teeming with people by 8:00 a.m. Let that sentence sink in because it is an unbelievable sight. We didn’t wait long before one of the oncologists on my case met with us and brought us into a room. I started the whole story of how I even got there to begin with and she shared the results of the PET CT with me.

The bad news: they couldn’t identify a primary source of cancer from the PET CT

Second bad news: I will need a biopsy of my liver to help determine the primary source of cancer, so that they can stage and figure out treatment

Third bad news: the PET CT results showed metastasis on my liver, spleen, and bone. They saw a small shadow on my right breast and possibly something in one follicle of the left ovary.

But even with all of the things they see on the scan, it’s not enough to know what kind of cancer I have. And, as much as it sucks, I now have to just wait. I have to wait to have a liver biopsy, then wait for the pathology report which could take between 10-14 days, before knowing hopefully what I have.

What I’ve learned during the past week of living with cancer is that knowing the primary source of cancer is CRUCIAL in treatment. These days, treatments are so so specialized that you must know the primary source. So, I’ve been praying for the following:

1) That by some grace of g-d and some miracle this is all a big mistake and it’s not cancer, but some other easily treatable rare medical issue.

2) If it really is cancer, they identify the primary source ASAP

I was overwhelmed with information after meeting with the oncologist and since most of the answers to my question was “we don’t know, we will know more after the liver biopsy” I didn’t leave anywhere closer to understanding what is going on with me. My husband asked my oncologist if I can do things, if I can exercise, what should I be eating?

My oncologist said that I can do whatever I feel well enough to do, and that I can definitely exercise. In fact, he encourages it. He then paused and said, it would also be good if I could try to lose some weight.

And I just looked at him and said “but that’s EXACTLY what I was trying to do and somehow I ended up here!” He smiled. I guess even oncologists can have a sense of humor.

Because of the small shadow they saw on the PET CT in my right breast, they sent me to have a repeat mammogram and ultrasound. Fortunately, they were able to get me in today for these tests.

Now, I had my very first mammogram and ultrasound back in July. As soon as I hit 40, I spoke to my doctor and discussed going for this test. My maternal Grandmother had breast cancer in her 50’s and I wanted to make sure I was tested early and often. I also participated in a BRCA1 trial last year and was told that the results were negative and I did not carry the gene. They told me back in July that the tests were all normal, and I felt such relief!

Today, after taking what seemed like a million images of my right breast, the doctor did an ultrasound and decided to biopsy whatever the “spot” is that was picked up in the PET CT. Now, no one warned me about a biopsy and I’ve never had one before, so you can imagine how frightened I was. And have you ever seen the size of a biopsy needle?? I just closed my eyes tight and tried to imagine myself anywhere but on that table. I was shaking so hard from fear that the mammogram technician had to physically hold me steady.

And now we are back to waiting. This test will also take between 10-14 days before we get any results back. I’m scheduled for a liver biopsy on Monday morning. That test will take four days longer before I can get the results and see my oncologists.

There are a number of restrictions on what you can physically do after a biopsy. One of which is that I can’t lift anything weighing more than 5 pounds for the next 3 days. That would have been okay if 1) I wasn’t making a Thanksgiving turkey for Friday night dinner and 2) if my 4 year old didn’t have the mother of all meltdowns tonight, begged me to pick him up and hold him, and I was just not able to do it.

That was hard. Not being able to pick up my baby was emotional.

But I am really, really trying to stay positive.  After putting up a wash, moving the wash into the dryer, hanging the wash, cooking rice for dinner, and dealing with a big work crisis, I joked that “this is what Mommy cancer looks like.”

Walking around in this unknown phase is excruciating and disorienting. I need to get through one last test, the liver biopsy, on Monday morning. And all of this waiting.

But I’m really going to try to power through.

Please keep praying for me: Shira Batya Bat Chaya Yehudit

PS. We still haven’t told the kids, we need more information before we can talk to them. They know something is up but we are trying to act as normal as possible in front of them. This might not be the best decision we are making as parents, but for now, we feel like it’s just the best decision for them. 

 

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2 Responses to The waiting game

  1. fern and jerry says:

    Our thoughts and prayers are with you across the miles. We hope everyone’s prayers for a quick recovery are answered. Keep smiling.
    We love you. Fern and Jerry

  2. Lily says:

    Hi my love. I will pray for your quick diagnosis while I light my Shabbat candles today. You are strong. You are a fighter, your quick humor is always present and your inner light is on fire, I know you are scared and you are trembling, but you are also shaking with bravery with love and positivity that all of us are sending you. Thank you for being so courageous to update us. To share your story as it happens. We are all standing by to help however we can.

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