Not what I Expected

This past Friday, I took the ferry into Seattle for my appointment at Seattle Cancer Care Alliance. Let me tell you, the day leading up to this appointment was rough. I found out a cancer friend (who was being treated at SCCA) had just gone into the arms of Jesus, our dog got sick……like diarrhea sick over and over, and I was just stressed to the max about getting everything ready for my trip.

That morning, my husband had stuff at work he couldn’t get out of otherwise he would have come with me. That honestly didn’t bother me; it’s not like this was my first rodeo with a cancer team. I helped the big kiddos get ready for school, got them there a bit early, then brought my little sidekick to a friends’ house who generously offered to watch her AND pick up our big kiddos from school & watch them all until my husband or I could get them.

I dropped off my  little one and made my way to the ferry terminal. Thankfully I had plenty of time to park and get on the ferry with no issues (I seriously get anxiety about missing the darn ferry). The ferry ride was beautiful. Actually, the entire day was beautiful; it was sunny and in the 70’s that afternoon. From the ferry, I walked up to my bus stop and took the bus to Seattle Cancer Care Alliance. Once there, I checked in at registration and then went up to the third floor and checked in at the proper clinic. I filled out MORE forms while I waited but I did enjoy the view of Lake Union from the waiting room!

I was eventually called back by a nurse who took my vitals and then my Surgeon’s intern came in, introduced herself, explained what the day would look like, performed an exam, and asked what questions I have for the team or topics I would like them to address. I shared my questions and concerns and then was free to go to lunch while the team met and went over my medical records and discussed my cases (and two other cases). I had brought my lunch and asked the woman at guest services if there were any nice locations to eat outside. She directed me to one of the Fred Hutch buildings across the street that had a beautiful courtyard with a waterfall and amazing Japanese Maples providing shade. I sat and enjoyed my lunch, amazed that just beyond this tranquil courtyard was a busy road and I-5, the major freeway that cuts through the heart of Seattle. The waterfall attempted to roar over the sound of the traffic emanating from the freeway. Upon finishing my lunch, I walked back over to SCCA and went back into the same exam room and donned the coveted hospital gown, as I had been instructed, and there I waited.

My team eventually entered, introduced themselves, we chatted a bit about why I came to SCCA, a bit of my history, they performed their exams, and then left so I could get dressed again. The surgeon and her intern came back in first to discuss her recommendations. First of all, I have to say I really liked this surgeon. She has been doing ONLY breast surgeries for 14 years. She has an amazing bedside manner, and she was incredibly encouraging while still being factual and informative.

**Realize the ENTIRE reason I came here was to have surgery** She explained that while  she wants to explant my implants and remove the tumors, they don’t feel they can safely perform the surgery right now.  She explained that the tumors have grown since the biopsy and the PET scan and my skin changes point towards skin involvement. One major concern is that if she were to perform the surgery now and get clear bargains, she might not be able to close me up. They would likely need to do skin grafts…..nope…no thanks. She further explained that while my metastatic disease in “quiet” and not showing up on scans, that surgery causes an inflammatory response that often causes “quiet” cancer to resurface with a vengeance and she did NOT want me to deal with skin grafts, no hope of reconstruction, and a resurgence of my metastatic disease. She expressed that the team felt the best course of action was to start a more aggressive treatment to knock down my local recurrence, shrink the tumor, hopefully heal the skin, so that in 6 months to a year, we CAN move forward with surgery. She explained they would follow my imaging and as long as we get a good response and my metastatic disease stays quiet, we can definitely consider surgery and hopefully even reconstruction down the road if I wanted it with far less trauma, cutting, etc. I asked the surgeon few questions before she left and then found myself sitting with this information.

You would think I would have felt sucker punched. Surgery was the entire reason I came here and she’s telling me we can’t do it now. I won’t lie, the negative thoughts started:  “oh no….this is BAD…it’s spread so far they don’t want to do surgery. Is this the start of my downward spiral? What if I don’t respond to treatments and this keeps growing? What if…..what if…?” Despite these fears rising, my heart remained steady. I took a drink of water, and gathered my composure. I realized I had forgotten to give the team my new oncologist’s recommendations of the metronomic chemo and such so I figured I’d pull up his website to have his recently published article on hand. I grabbed my iPad and popped Dr. Chue’s name in the search bar. His clinic’s website was the first search result but something prompted me to scroll down. A few links down I saw the names of Dr. Chue AND Dr. Standish (my naturopathic oncologist) in this link, titled “Stage 4 to Cancer-Free….” Of course I clicked on it and read intently about a woman who had advanced pancreatic cancer, given 3 months to live. Dr. Standish referred her to Dr. Chue, having followed some of his success and this woman was declared CANCER FREE 5 years later!

THEN I went back to my search and scrolled down further to find ANOTHER story of another woman who is cancer free after stage IV breast cancer AND her blog is filled with God’s goodness in her life and on this journey. I sat there, in amazement, as I felt God was literally helping me narrow my options and lighting up the proverbial runway of the path he wanted me to take. Such peace washed over me. I felt SO very sure that God was showing me HIS plan for me. I sat there, on the exam bed, nearly in tears of joy. How many people can say that after being told their cancer is too advanced to surgically remove?

Phew! So I waited, and waited some more for the medical oncologist.  When he came in, he sat down and asked how he could help me. I explained that I had come for surgery but since that wasn’t on the table, I would like his opinion on medical options. He was very thorough in explaining how I have only been exposed to a very few amount of medications and that my cancer (ER/PR/HER2+) is very responsive to a number of medications that target different receptors. He excitedly shared that there were now third and even fourth lines of treatment to target the different receptors that were extremely  effective and he had no doubt that I would respond well. Then he talked about all the clinical trials that were showing great promise.  However, when I asked about specific newer meds, he would concede that they were very effective but kept referring back to the fact that I’ve not done many meds and basically wouldn’t be able to try any of the new ones until I’ve tried and failed on the older meds. You might be thinking, “WHAT?!?! WHY?!?” Because these are the hoops that the standard of care expects cancer patients to jump through. You literally are “supposed” to go down a specific line of treatment and when  one fails, you go down to the next, and when that one fails, you go down to the next. When all else fails, then you might qualify for a trial or immunotherapy or one of the really expensive meds but not sooner. It’s completely asinine and the definition of insanity, if you ask me. So, I just smiled and nodded my head at him. He finished his explanation and basically told me to choose a treatment line and stick with it and he was confident I would be able to have the surgery down the road. I mean, nice sentiments but the process he laid out…..no thanks. I thanked him for his time, he left, I gathered my things, and left.

I walked to my bus stop AMAZED at what God had done that day. I arrived, thinking the plan was one thing and left with a vastly different plan but total peace and assurance in that plan. This was no coincidence, nor happenstance. NO, this was God’s perfect timing. I have repeatedly and specifically asked God for wisdom in the journey and he has provided so liberally. This thorn in my side is a literal tumor protruding from my breast (if you see me, my left breast looks like it has a GIANT nipple….that’s my tumor). It is a constant reminder of the fact that this life is short and precious. It is a constant reminder that God is faithful not only in His promises of grace and forgiveness but His promises to provide peace, wisdom, joy, shelter, and strength when (not if….when) we face trials.

On the ferry ride home, I was in awe of the view of Mount Rainier in the distance. Such a majestic mountain, covered in snow. My mind immediately went to the past two months’ bible verses from church:

Psalm 121:1-4
“I lift up my eyes to the hills (mountains).
From where does my help come?
My help comes from the Lord,
who made heaven and earth.
He will not let your foot be moved;
he who keeps you will not slumber.
Behold, he who keeps Israel
will neither slumber nor sleep.“

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God, who made the heavens and earth, who formed the majestic and behemoth Mount Rainier and little ole me, is my helper who keeps me. In this text, “help” comes from the word “Boétheia which itself is the combination of two words: boé = a cry, exclamation + théō = to run. It literally paints a picture of one who, upon hearing a cry for help, runs to give aid or offer assistance to the one in distress. The word “keep” or “keeper” is the hebrew word shamar, which means to watch over with great care.

I have literally and figuratively cried to God for help and he ANSWERED in a clear and amazing way today.

So where do I go from here? Well, I have an appointment with my local oncologist (here in Kitsap) this Friday. I covet your prayers that she would be receptive to working with Dr. Chue to administer the weekly, low dose, metronomic chemotherapy here on our side of the water. I acknowledge that may not be part of God’s plan…..part of His plan may be for me to travel to Seattle weekly and if that’s the case, I will joyfully go. But….if I could receive treatment here that would make life so much easier.

I also covet prayers for provision. Part of Dr. Chue’s recommendations are the metronomic chemo but also basically a metronomic, low dose, immunotherapy to help my body’s immune system recognize the cancer and attack while the chemo does it’s job (and while all my repurposed meds starve it). Unfortunately, the immunotherapy is not FDA approved for breast cancer and is considered “experimental” at the moment so our insurance denied it. I am exploring options and may be able to get some at a low or no cost but this is something he would like to see me take for a number of years and we simply cannot afford it out of pocket. Some states have required it be approved in “experimental” cancer treatments with certain right to try laws but WA is not one of them. I realized yesterday that I should find out how to raise some noise and change that!

In addition to Dr. Chue’s recommendations, my Naturopathic Oncologist does want to see me using Hyperbaric Oxygen Chamber (HBOT) treatments and IV vitamin C to compliment the chemo and help my body heal. Both of these treatments are out of pocket and not exactly cheap either (one session of both just once a week is about $500).

So, we will move forward with chemo, either here or in Seattle, and pray for provision for the other treatments. God has led us this far, we trust He will provide for where he is leading. I hope this has brought you hope and joy in the midst of whatever YOU are dealing with in your life!

Blessings!

Cheryse

2 thoughts on “Not what I Expected

  1. Cheryse, I am praying for you for wisdom, comfort, doctor’s wisdom and humility…. Praising God for His quick answer to prayer at SCCA!!! I remember meeting a conventional oncologist who sat, with me in a corner and him toe to toe with me (essentially blocking my exit) and told me, “You will get your port put in this week! You will come back here next week and start chemo!” I did what you did and sort of smiled and “nodded” and thought, “Over my dead body am I coming back here!” It is sad and frustrating that we are not a human being in their mind who needs individual care. They treat us like cookies cut with the same cutter…. chunk, chunk, chunk…. ‘Oh that didn’t work, there is nothing more we can do.” Sigh. I feel bad for SO many who go that route. Dr. Chue fights to the end with gentleness and humility (whether the end is cure or death). And if your oncologist won’t work with Dr. Chue…. there have been patients that drove weekly from Canada, Oregon, Moses Lake, Spokane, Bellingham, Olympia, Vashon Island and some flew from Oregon and one gal and her hubby flew from Florida for a couple years! And not one of them or anyone else has regretted coming to Dr. Chue. The atmosphere is part of the cure. We are working on getting him to paint the walls warmer colors and such, but the doctor, staff and the other patients are really what make it a restful, hopeful place.

    Do you send out emails or some other sort of social media reports? I have over a hundred people I email out prayer requests and updates. It is friends, family, people who have heard about me and said they would pray for me, friends of friends… even a nana of a friend of a friend! I know many of their children have prayed for me and it is sweet when God answers their prayers! I know that God and Dr. Chue have cured me thus far.

    Best of all is how God meets you in your trial. I find it amazing how God has met me in such weakness, frailty, confusion, etc. The time on chemo was a great time to read through the Bible many times and really see Who God is, to know Him better and be comforted. Praying for deepening in your relationship with Him and your family. And may God receive all the glory!

    Hoping to meet you some time!

    Like

    1. Thank you for your encouraging words! Yes I am very much looking forward to this chapter with Dr. Chue and his team! I do agree that a little paint will definitely help with the atmosphere but I realize they haven’t been in that building super long. I’ll make a suggestion about it too 🙂

      I do post updates on my Facebook profile and share there as well. I have an army of prayer warriors, probably most of them I’m not even aware of. It looks like I will be doing treatments on Fridays but I would love to figure out a day or time to meet you 🙂

      Liked by 1 person

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