Hello from the beginning of chemo round 4. Of what feels like round 17. And, it’s not even me. It’s not my body. Although, if there was anything I could ask Him, it would be to spare her and take me. I wanted to share an update on her healing plan, chemotherapy, and overall status.
But, alas, we’re on the healing train.
And, healing takes time. I wish the result was overnight. I wish we knew the outcome. Patience, never my strong suit, has been tested, along with so many things (like my trust in the Lord) during this season. A season, just that – one that will eventually end, and the beauty of a new day will dawn.
Those words are so much easier to say, fresh out of therapy 3 hours ago.
I’ve written more, felt more, cried more, this season than many past. But, I look forward to the day when I remember the purpose of this season. I look forward to understanding it’s purpose. Since, I don’t understand it now.
Sigh
I will not wallow in the dread of what if, because the present is heavy enough. I will remain present & full of His love & strength and power
I will expectantly pray for His way. Knowing full and well that His plan is already determined.
I must remember that momentary pain and sorrow can produce joy.
Lift my load, dear lord.
Reduce suffering dear lord. Selfishly, for mama.
Spare me.
Now, for the update. If you want the “good and well” answer, it’s not here. This is the realest and most realistic feedback you’ll get. I’m all clinician despite being a daughter. But, even as a clinician, I can’t help but to see God at work. So many of our appointments have been met with testimonials, miracles and health professions who are experts, but also have strong Faith. I am so thankful to feel His hand at work.
Treatment
Danise is on a 14 day rotation of chemo therapy. She is in Seattle from 10-4 every other Tuesday and takes home a chemo bag for another 42 hour infusion. The efficacy of this treatment is LESS than the one her current doctor would like to start with, but since Dr. Jefari started this, we can’t transition to the advantageous Metronomic Low Dose Chemo until we see this one, essentially, fail. The mix of “conventional methods” and “what insurance covers” has me in a sort of rage. But again, patience, Dr Chen reminds me. Unlike most oncologists he is patient, slow to speak, remembers you, and is so kind.
They check her tumor markers every 2 weeks. These have currently continued to rise. This is normal, as we attack the tumor. We look for a large drop between round 4 to 6. Her CT scans, for checking it’s size, occur every 12 weeks. The next one is slated to be in a few weeks. Luckily, ordered for Skagit.
We changed doctors. I’m not sure how much of this I shared, already. But, Skagit is not an expert in pancreatic cancer. Or anything that would require more than the conventional standard.
And Seattle Integrative Cancer Center is so efficient. Transitioning here was truly a gift. The fact that insurance allows it; also, a miracle. Not only do they NOT require her to do labs the day before, but they ONLY draw labs through her port; no arm sticks. Their love and understanding of patient care is incredible after feeling like a number at Skagit Regional. They call back within hours and patiently answer questions. They treat their patients like humans. They say “yes” to our crazy ideas, more than “no.”
At Skagit Regional we were told, although they are not pancreatic cancer experts, that:
- “High Dose Vitamin C will decrease efficacy of treatment” despite the research studies I had to offer them. That “there was no benefit from nutrition in cancer; just eat what you can”
- and any outside supplementation besides “a multivitamin” was discouraged.
- I begged for molecular testing here, which was a requirement from our new doctor; so we can learn as much as we can about the tumor we are working with, and specialize care.
I refuse for her to be a number. Our first visit to Seattle Integrative brought my mom to tears; instead of being strong-armed and yelled at by her Oncologist (like her last visit at Skagit; ironically the visit I couldn’t be present for, right before chemo) she has handed tissues, delivered treatment in half the time, given pre-chemo vitamin infusions and was confidently educated on the entire process and how to work her own pump AND de-access her own port. Really incredible.
I reminder her routinely that she has two jobs: Heal and Rest. Her “healing weeks” consist of a routine that includes, but is not limited to –
- High Dose Vitamin C Infusions – 50g 3x weekly (one of these is done right before chemo, one right after) with Dr. DeJong
- Mistletoe injections 3x weekly – done at home
- Ozone Insufflations through the hepatic portal vein
- ALA infusions a la Berkson protocol
- Functional Chiropractic at Country Clinic 3x weekly
- Daily Juicing to increase her intake of greens (you know she loves vegetables) and antioxidant load
- Daily Infared Sauna at BellaSoul (or at my house in Dallas)
- Monthly wellness check-ins with Maria Putney; oncology ND and cheerleader
- A daily vitamin regimen that includes: Vitamin D, Berberine, Selenium, Silymarin
- Filtered water (Berkey) and filtered air (AirDoctor)
- No fragrance, perfume, conventional makeup, limited plastics and a change of all toxic detergents & cleaning agents.
- a plant-heavy diet with no gluten, refined sugar, and all organic meat.
- protein shakes from Rebbl or Koia or Orgain with MCT oil additions.
- The Rife Machine
I share this, because so many people are asking, “what are you doing?!” And honestly, conventional healthcare doesn’t have YOU do a lot. You’re asked to sit back and swallow the pill. This is not the path we’re on. If you have any questions on specifics, resources, or referrals, please don’t hesitate to e-mail. I didn’t take the time to link everything. But, this is why I share. For hope. For awareness of other options.
This process takes a whole tribe. 24/7.
And, healing takes time. But – she is rocking it! Truly. These have been dramatic changes. Her spirits are high. She actually made dinner last night and drove herself to treatment. And, a few weeks ago, we had an incredible time in Dallas together; 9 days of sunshine and healing with her sisters. My aunts experienced Dallas through her eyes for a whirlwind 72 hours with the most beautiful prayer night at Shoreline City. The weather in Washington makes it hard to get outside and enjoy the sunshine (if there is any), so her providers have agreed to another week in Dallas where can she get deep sleep. Here, she continues the same treatments. We Thank God for flexible practitioners.
Many of these unconventional treatments are highly effective BUT are being paid out of pocket (specifically her vitamin infusions, about $200 per time). If you’d like to donate to any of her upcoming out of pocket costs – you can use this link (or Venmo 3608405880) Otherwise, we know, the Lord provides. There’s a reason I learned to save well. But, because so many have asked, I’m putting it here once despite all my urges to say, “we don’t need help thank you!”. Which, would be a lie, when a household income is cut in half.
I also want to take a moment to say, “Wow, thank you!” to the hundreds of you who have, despite ALL the shit in your own lives, stopped to love on my family. This is not required. You are doing more than we could ever ask for. Thank you for prioritizing that love, that attention, that prayer, that donation, that gift basket, the meals. All of it. Thank you for joining in with us. I feel so blessed to get moments at home with my family, to still see patients. There are small silver linings around every corner.
At the end of the day, the plan is His plan. And, your prayers, mean the most. Pray that she gains back some weight (She has lost a little over 20 pounds in 3 months), that her spirits remain high, that her care team stays well, and that this is just for a season. Everyone who calls on the name of the Lord will be saved – Romans 10:13.
Thanks for all that you are doing and carrying on your shoulders. Saying daily prayers for you all!
Thank you Shamay! It means so much. Every prayer.
Whitney, you do not know how much all this means to me having you share your mom’s walk through this dreadful disease. We never know how , who , or when someone else that we love or care for will go through this and all the information we can get is powerful…Bless you for doing this. Danise really looks good for what she is going through and your grandma Marie told me that she was driving and doing things on her own and that was awesome to hear.
Thanks again and as always I am praying for Danise and everyone that is helping care for her in so many different ways..God Bless and God is good !!
Thank you Marilyn! I really appreciate your love and support