UPDATE: April 16, 2019
Since my reaction to Taxol, my chemo has been switched to a lower dose Abraxane and now once a week (instead of every other week), for 9 weeks. Last Friday, my blood tests showed iron/hemoglobin, white blood cells all too low, so they sent me home without chemo, to take it easy and let my body catch up. Basically, my body is overwhelmed by the chemo and not bringing things back up to normal as quickly as expected. My next appointment is for this Friday, and hopefully I’ll be back on track then. Since Abraxane is lower dose (3 Abraxane = 1 Taxol), if I stay on the weekly schedule, my chemo goes through the end of May, first week of June.
As of April 1st, I’ve taken a leave of absence from work, due to “exhaustion” and many other symptoms of chemo. Now, the stress is about money, because my employer agreed to pay me my 2 weeks vacation pay and then half pay for 7 additional weeks, then nothing, but Family Medical Leave (unpaid) means they have to hold my job for me to come back to until October. And, I have no savings left. I’ve applied for disability, so we’ll see what happens there.
Your tax-deductible gifts mean everything to me! Thank you for helping me out during this very crazy time.
UPDATE: March 20, 2019
During the August 2018 surgery, they did a partial mastectomy and removed a “seroma” or fluid filled sac, which turned out to have cancer in the lining, and under my skin. This continued to grow and it was removed by a third surgery in December, 2018. Then, the decision was made to “do something systemic” because how many surgeries can you do? It’s time to do something systemic — in other words, chemo. Dose-dense Adriamycin, Cytoxan, for 4 infusions, every two weeks and now Taxol for 4 infusions, every two weeks.
Last Friday was my first Taxol and towards the end of the hour-long infusion, I had a “hypersensitivity reaction” — coughing and unable to take a deep breath, along with stabbing pains in my back/kidneys. I’m having issues with the nurses who failed to recognize the reaction, and have a request in to speak to my oncologist, feeling very uncomfortable about returning for the next scheduled chemo session… I assume he will alter the dose, the speed of infusion, try a different drug, etc.
I’m feeling very tired, experiencing difficulty with memory and focus, achy all over and need to eat every couple hours, and drink lots and lots of water, some upset stomach — generally, it’s a deep dive from “normal” and I’m accepting all the help I can get. Since most of my hair fell out after the second chemo, I’m sporting a stylish buzz-cut! Financially, I’m behind on condo maintenance fees and a special assessment, so I do appreciate continued donations to this fund.
I hope to have better news in future updates. If chemo schedule stays the same, I should be done with it by the end of April, 2019. Radiation and double mastectomy remain possibilities but I’m not thinking that far ahead.
Thank you for your support and donations. Love and Hugs, Alice
UPDATE: Aug. 4, 2018
Good morning! I’ve been wanting to write an update once I had a plan in place and could be able to ask for funding to purchase specific things, and I’ve wanted to find a naturopathic or functional medicine oncologist so I’d have a cancer expert who is also an expert in “alternative” treatments to guide me. That hasn’t happened yet.
I’m relying on my breast surgeon. And now on her recommendation I have a new primary care physician. The previous PCP yelled at me and told me I was going to die if I didn’t do chemo!! I disagreed, especially since I know people who have used alternatives and healed themselves. I like the new doctor a lot, so now I feel happy that I have two doctors I feel are supporting me.
Since the October, 2017 diagnosis, I have seen 4 different medical oncologists, hoping to find one who was at least familiar with supplements and the treatments that are out there other than chemo/radiation. Even though the tumor was removed, cancer cells and micro-tumors can still be present in the body — that’s how metastases show up. So, there is the need for a doctor who can do a systemic treatment.
I’m refusing radiation because of the permanent damage it does to skin, heart, lungs and ribs/bones. I’m also refusing chemo because of the effects which are often permanent, including heart damage, neuropathy (pain/tingling/numbness in arms/hands, legs/feet) and memory loss/brain fog, destruction of teeth… I’ve seen too many women in the groups I’ve joined who’ve done chemo and radiation, still dealing with bad effects, and with 2nd and 3rd recurrences! Especially with Triple Negative Breast Cancer, the treatments are mostly guesswork and compromise, because only about 10%-15% of breast cancers are TNBC, so there has been less research to find effective treatments.
I’ve given up, finally realizing that conventional medical oncologists, even (maybe especially) at the top rated cancer centers, have their hands tied. They can only recommend chemo (they print out a treatment protocol from a national cancer website, not the personalized care they all advertise) — otherwise they could risk lawsuits or losing their jobs if they deviate from the “standard of care.” I will not dwell on the very stressful experiences I’ve had, but am moving forward. I never thought I would have to turn my back on ‘conventional’ medicine.
My mother was a doctor, so my expectation was that especially with a potentially life-threatening disease like cancer, the oncologists would be eager to find whatever would actually work to help me heal, and at least find treatments that would not leave me with permanent disability. That’s how my mom practiced medicine, but it seems that times have changed! I’ve had to shift my belief/trust in the medical industry because now I have first hand experience that the practice of cancer medicine is geared toward the business of medicine and not the art or profession of healing patients. Hard to believe but that’s what I’ve found with medical oncology!
Many people have contacted me or just shown up in my life with healing advice or treatments just as I’ve needed help. For instance, my neighbor’s sister who was visiting from Switzerland, just happened to be a practitioner of applied kinesiology, and did several treatments for me while she was here, and also helped me determine which supplements are most important for me to take. Her treatments (based on acupuncture points/meridians and muscle testing) increased my energy level, and her help increased my confidence.
A week-long visit from a friend who realized I was depressed and helped me around the house and also since she’s a colon hydrotherapist, gave me colonics.
A phone call from a friend who recommended a healing practitioner she’d worked with, resulted in a phone consultation with him about diet and supplements.
In March, I attended the Annie Appleseed Project conference on alternative cancer treatments, which was a full 3 days of information and presentations by people from all over the world who are getting good results, and some conversations with other people using or seeking less toxic, healthier treatments for their cancer. And, I also consulted with Dr. George Wong, the Chinese Medicine doctor who helped Project founder Ann Fonfa to get rid of her cancer tumors.
Most if not all of the alternatives cost money and are not covered by any health insurance. So, I haven’t moved forward with any particular practitioner, protocol, clinic, devices, etc. because of the cost. $700 for an initial office visit? $3,200 for a PEMF device? Also, because there are so many different choices — which is best for me?
The other thing is, since I had a lumpectomy, there’s no actual tumor to treat, so I’m told there are people who are sicker than I am and I don’t need to do any particular treatment other than to maintain healthy changes to diet, exercise, sleep, reduce stress, etc. and if a tumor shows up again, then come and get treatment.
I’m finding that I am pretty intuitive and I have great guardian angels and as I keep researching, things keep showing up. And, I’ve been spending every spare moment researching! I’m finding that my interest in health, study in medicinal herbs, meditation and healthy diet in the past, is coming back to help me in the present.
Last weekend I watched Hay House Health Summit videos by Joe Dispenza, Bruce Lipton, MD, and David Hamilton, PhD – if you don’t know about them, do a Google search! They all talked about the mind-body connection and how meditation/visualizations help change the body chemistry and gene expression and are able to heal. One aspect, the placebo effect/mechanism requires that you have enough proof to believe that what you do is going to heal you — for instance, after you take a pill enough times and it does relieve your pain, you have a solid belief that it will work if you take it in the future.
So, I asked my angels for examples where meditation/visualization helped heal and I got a phone call from someone I hadn’t heard from in probably 2 or 3 years. She’d had a stroke many years ago, and was told she’d probably never walk or use her right arm/hand again and she told me she did visualizations because my mom called her every day and talked her through a process of focusing and seeing her hand move, etc. Now she walks and she uses her arm and hand.
Encouraged by that, I remembered a health meditation I had recorded as a giveaway to people who purchased my cookbook ten years ago, and discovered I still have the recording. Now I have a meditation/visualization for myself!
I am scheduled to have another surgery on August 20. After the lumpectomy in December, I felt lumpiness and went to see the surgeon in March. She did ultrasound and said it was benign, healing, scar tissue, and metal clips that are left in the breast after surgery (I didn’t know!). That has now grown into a mass that is filled with fluid – possibly a reaction to the metal clips? It is not going away but just getting bigger, so the surgery will be to remove it (and hopefully also remove the metal clips). The fluid was tested and it is not an infection and not cancer. They will test the tissue after surgery. So, we’ll see.
Once you’ve gotten a cancer diagnosis, once you’ve removed the tumor and “gotten it all” that’s just the beginning of dealing with cancer! I thought this would be something I’d go through and come out fine! Now I realize, yes, I’ll be fine, but you’re never done with the lifestyle changes, testing, monitoring and therapies. Health is something you have to do every day, just like breathing!
I’ve found a local group that will help me pay for what insurance doesn’t pay for the surgery (I have about $2,200 left to pay before I reach my out-of-pocket max for the year and then insurance pays for the rest). Of course, any donations to this Alice Alive and Well campaign will help me and will be a tax deduction for you!
Now, I’m going to get outside in the sunshine, get some exercise and Vitamin D!
Thanks again to all who have helped me! I wish you all vibrant good health and happiness! I’ll post another update after the surgery.
Love and Hugs,
UPDATE: Jan. 13, 2018
Happy New Year everyone! I’m hoping for great things for all of us in the new year. My surgery on Dec. 28th went well. Even though I was under general anesthesia for the surgery, they sent me home the same day — it was outpatient surgery, the new standard practice. They removed the 4 centimeter breast lump and 4 lymph nodes from under my arm. The pain was much less than I’d anticipated. I’m still sore but have not had to use any pain medication, and I have to be really careful about how I move, etc. until this is healed. I still get tired about halfway through my day.
The good news: the pathology report came back saying there was no cancer in the lymph nodes and no cancer in the margins around the tumor — in other words they got it all!
Now, I’m being told that even though this sounds like great news, the medical protocol is to do chemo and radiation anyway — as a preventative and because there can be microscopic cancer cells that escape into the bloodstream, and once the cancer has spread, there is no cure.
Triple Negative Breast Cancer (not hormone driven) is said to be especially fast growing and dangerous. Because this type is a minority of cases, less research has been done and therefore fewer targeted therapies are available. Surgery, chemo, radiation are still the standard treatments.
I have an appointment with a medical oncologist at the Cleveland Clinic offices in Weston (near Miami) which is about a 2 hour drive from here, to see what their recommendation is for me — I was hoping that since they got it all, I could consider myself cancer-free and just do vigilant testing/monitoring to catch any recurrence, and eat a healthy diet, continue with supplements.
My tumor tissue is also being sent to a new DNA testing program that sequences 30,000 genes to see exactly what therapies would be effective against this particular cancer. That could help determine whether chemo and radiation would be effective at all, and if so, specifically what type of chemo drug or other treatment like immunotherapy would work.
And, I’m once again taking supplements and seeking out “alternative” less toxic and more effective treatments. I’ve seen too many people with TNBC say they’re on their second and third recurrence after they’ve done chemo and radiation!
I’m applying for a medical marijuana card because I’ve read that it can be effective both to eliminate cancer cells and to alleviate anxiety and symptoms of the conventional treatments.
Generally, I feel positive and now I’m seeking out more specific alternative therapies to make sure my whole body and my whole life will be as healthy as possible. Thank you to all who are supporting me on this very interesting journey! I will keep updating as I learn more!
All the very best,
Please help with my “personal plane crash”: https://www.facebook.com/alice.karow/videos/vb.670847003/10156708552397004/?type=2&video_source=user_video_tab AND…continued: https://www.facebook.com/alice.karow/videos/vb.670847003/10156708772437004/?type=2&video_source=user_video_tab This is my appeal for help with my diagnosis (Oct. 2017) of breast cancer. Please use the links above to watch my video notice (it got interrupted, so please watch both videos to get the whole story). It’s a particularly serious type called “triple negative” which means they don’t have specific therapy other than standard chemo and radiation and surgery. Triple negative is less common than hormone-driven types of breast cancer and less is known about how to treat it. My inclination to begin with is to use changes in my diet and lifestyle and all the natural means possible to treat illness, and to avoid massively damaging therapies like chemo and radiation. I’m also practical and believe in using allopathic medicine at times when it is the best choice. As I stated in the videos, I’m asking for donations and help in different forms – including prayer! And, I’m asking for financial help. Here’s what your donations will be used for: Insurance won’t pay for supplements or alternative therapies, and already I have several hundred dollars in co-pays just for diagnostic imaging, etc. In January, 2018, my insurance co-pays and out of pocket maximum will increase (more than double) for medical expenses, doctors’ appointments, diagnostic tests, surgery/hospitalization, etc. I have traveled to Tampa for the second opinion appointment, so there will be some travel expense. Also, since Hurricane Irma hit, even though my unit is not damaged, my condo fees are going up by $65 a month and I hear there will be additional assessments to pay for clearing trees, re-landscaping and repairing damage to roofs, etc. When you are part of a condo association, literally,”mi casa es tu casa” all expenses for buildings and grounds are shared! Fortunately, my employers and co-workers have been very understanding and supportive, and I am not in danger of losing my job because of lost time when I may not be able to work. I work for a small arts non-profit on a part-time basis and barely meet expenses when everything is fine. So with all the unexpected emergencies, “personal plane crashes”, I’m finding that I need to ask for financial help just to keep the basics covered and on top of that to deal with this breast cancer adventure! Since I value your efforts to help, I wanted to make this work well for you as well as for me, so I searched for a crowd funding site to make your gifts tax-deductible. This site makes gifts tax-deductible for contributors and non-taxable gifts to me. With possible tax changes, here’s an article about charitable giving strategies to help: https://www.forbes.com/sites/ashleaebeling/2017/12/13/why-2017-is-the-year-to-give-to-charity-if-you-want-a-tax-break/#4068b89b5818 I’m starting with an achievable goal and will increase it as needed as the journey progresses and will update along the way. I appreciate whatever you can give! Love and Hugs, Alice