We are using this site to keep everyone updated in one place. Ascentia has become overwhelmed at trying to keep up with the communications of her family and friends, so this site is in part to keep those informed, who wish to be informed on her status, needs, and recovery. We appreciate your support and words of hope and encouragement. Thank you for visiting.
On June 30th Ascentia collapsed of both a transient ischemic attack (mini stroke) and a heart attack. She was hospitalized for several days where every form of test was performed (MRIs, CAT Scans, X-rays, Echocardiograms, EKGs, Ultrasounds, Stress Tests, Blood Work, Etc) to locate these very unusual occurrences for someone of her age and quality of health. After several days, a team of doctors sat down with her and said, "you're an enigma to us, we cannot find the cause of the TIA and heart attack". The only thing out of the ordinary was that all of her blood counts (white blood cells, red blood cells, and platelets) were unusually high. They assigned a Hematologist to her to do further testing. All the doctors assumed that her blood counts increased out of shock as a result of the TIA and Heart Attack. She was discharged from the hospital, told not to worry, and to make an appointment to see the Hematologist in two weeks to go over a particular blood culture that would take 10-14 days to obtain results. She went home, felt very weak and dizzy, and four days later had an exact repeat TIA/Heart Attack. Five days later on her way to see the Hematologist, she had another TIA/Heart Attack episode. It was then revealed that she had a genetic mutation marking of the JAK2 gene that points towards a very rare blood disorder called, Polycythemia Vera. This is a condition where the bone marrow cannot stop making blood. The blood becomes so thick that it cannot move through the vascular system, thus blocking oxygen flow to the brain and heart, causing strokes and heart attacks. They immediately rushed her in for an emergency phlebotomy, which is modern day blood-letting. They extracted a pint of blood from her body and she instantly felt a little better. She was also then started on an at-home chemo medication that suppresses the bone marrow from producing blood.
There is no cure or remission for Polycythemia Vera (through the lens of medical science), nor do they know why the spontaneous genetic mutation occurs, but it is very treatable through bone marrow suppressing medication, blood thinners, and phlebotomies. The primary goal right now is to get Ascentia's blood counts balanced to eliminate any further TIAs and heart attacks. Once that has occurred, she will work with her medical team to find, modify and monitor the appropriate treatment plan for her. Most people with Polycythemia Vera end up living relatively normal lives, while regularly monitoring their blood counts and managing a treatment plan. If all goes well, it would be similar to living with diabetes (in terms of lifestyle, not condition). Her hematologist is confident that once she recovers and stabilizes, she really will be ok! Our goal is to support her in getting to that place.
The already occurring miracle is that Ascentia has no residual brain or heart damage from the TIAs and heart attacks. We are so grateful for this, and feel that points toward her innate vitality! And there is still a healing journey ahead for her. Aside from working towards balancing her blood counts, and acclimating to the chemo medication, she is exhausted and traumatized from moving through so many near-death-experienes in a two week window, integrating into the medical and oncology systems, and doing the endless amounts of research needed to become educated and informed on her condition, the medications, and supplemental support avenues. Her main concerns at this time are balancing her blood counts, exhaustion, dizziness, phantom neurological disruption on the left side of her body (it was the left side of her body that collapsed during each TIA), extreme weight loss, post-traumatic stress from the TIAs and heart attacks, anxiety from moving through a very fast paradigm shift, stress of having to cancel her work events for the rest of the year, and getting into the Mayo Clinic for a second opinion and myeloproliferative disorder specialist.
Thank you so much for your care and concern. Ascentia will be adding updates into the journal entries on this site. Thank you for your understanding that she may not be able to answer all emails and text messages at this time. Your prayers of FULL QUANTUM CURE and OPTIMUM HEALTH are welcomed and encouraged. You can leave messages and well wishes here in this site.
A GoFundMe has been created to support her. Funds raised here will be distributed for out-of-network allopathic medical costs, holistic/integrative medical costs, recouping costs of having to cancel all of her work events for the rest of the year, meal preparation, household/property support (she lives alone), and offering her ease to take the time necessary to invest in her recovery. Thank you so much for your consideration. This is an example of where we believe Ascentia will experience Ayni, sacred reciprocity, for all the ways she has served, supported, and stood by her communities. We envision her FULLY HEALED, FULLY CURED so she may enjoy her life, and return to the beautiful service of her work, which is the joy of her life.
**Please note, the "Donate to CaringBridge" & “Tributes” buttons ARE NOT the GoFundMe. Those are donations to CaringBridge, not to Ascentia . The GoFundMe can be found at the top purple banner under "Ways To Help".
If you wish to send her something, this is her mailing address: Ascentia Fox 710. Paseo del Pueblo Sur Suite D, #316 Taos, New Mexico 87571
It's already been a month since I left my first update here. August was very full with many turns on this journey. I started on a very heavy chemo dose, with weekly phlebotomies. The side effects from the chemo were very unpleasant and it was hard...but it was also working quickly, so for that I am grateful. As my blood counts began stabilizing, the chemo dose was then cut in half, then took a one week break from it, and now I am on a very mild dose. My blood counts have maintained stable for a couple weeks now, and I have not needed to continue doing phlebotomies. This is very fortunate, as the treatment protocol I am doing does not work for everyone, or for some takes many months or years to stabilize. It will continue to be an experiment as to how much medication, and how often I will need to maintain the stabilization. according to medical science, there is no cure, so its just finding the right protocol to move through life with, and there is not a "standard protocol", as each person responds uniquely to both the condition and the treatment.
Currently I am moving through the referral process to go to the Mayo Clinic. This would not be a second opinion on my diagnosis, as that is clear, but rather a second opinion on my treatment, as there are many forms. I'm also having a lot of difficulty with what seems like post-stroke symptoms (dizziness, lack of balance, numbness/tingling on the left side of my body), so I'm also waiting to get in with a neurologist for further testing on this. I've had some great days of feeling like I'm really getting better, which is wonderful....and then when I'm having the dizziness/neurological symptoms, all I can do is lay down. I'm learning deeper patience and surrender, as this whole process is really just asking me to stop and rest.
Thank you so much to everyone for all your support...the prayers, communications, cards, flowers, meals, medical networking, gofundme donations...it is very much appreciated. I can feel the love, and it has been and continues to be so valuable in my recovery and healing.
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