Medical Expenses after Brain Surgery
** UPDATE October 9, 2020 **
Hello dear friends and family - This will be my last health update on GoFundMe.
First the really good news!!!! I had another brain MRI this past week and just learned that there are no new tumors!!!
As I wrote in my last update, I had a dose of immunotherapy at the end of May and am STILL feeling the effects from that treatment. Potent stuff! I’ve been on Prednisone steroids since then to keep the auto-immune symptoms from the treatment at a reasonable level. Basically even with the steroids I experience a great deal of fatigue, gastrointestinal distress (colitis), hair loss, trouble sleeping, brain fog, and just basically feeling really sick. But without the steroids, I would need to be hospitalized because all of the symptoms I just mentioned would be so bad I wouldn’t be able to function. So, yay Steroids! At least for now.
The fact that my tumor hasn’t returned after six months since my surgery, means that the immunotherapy must be working. So, even with my immune system being tamped down by the steroids, there must be enough still happening that the melanoma cancer either hasn’t spread or perhaps has even all been killed. They don’t really know so the plan will be for me to continue with immunotherapy treatment (just a lower potency version) for the next year or so. And, to get MRI’s every three months to make sure the cancer truly hasn’t returned. Also, I will get a full body CT or pet scan before the end of the year to make sure the cancer hasn’t ended up moving to another part of my body.
In addition to immunotherapy, I am getting regular massage with my dear neighbor and massage therapist extraordinaire, Ilyse. Someone at Nyland gifted me several (really a boat load - like more than any one person should have) massages with Ilyse so this is becoming part of my mental as well as physical health regimine. Thanks to the generosity of many of you with your donation to my GoFundMe, in addition to covering my traditional medical expenses,I am also able to receive regular alternative healing modalities like acupuncture, Cranial Sacral healing and nutritional/supplement support. The acupuncturist I’m seeing has been amazing at helping me to heal the damage done to my brain from the tumor and resulting surgery. She is actually helping me to regrow the tissue and nerves in my brain. My balance and peripheral vision is mostly back again! I still have “dead” spots in my foot and right leg where I don’t have any feeling. The crazy thing is that they change over the course of the day and from day to day. So, one time the bottom front of my foot has no feeling but then I notice later that day that the feeling is better there but not so good in my calf. Hopefully the work she is doing with my brain will result in my getting well enough to start riding my bike again next Spring. I have really missed that.
The big change since July is that I've returned to work again full time. It’s definitely been an adjustment but slowly my energy is returning and my boss has been great about letting me come back gradually over time. Most week’s I’m so spent by Friday that I just do a lot of nothing over the weekend just so I’m somewhat ready for the work week. I am hoping that as I get less symptoms from immunotherapy, I will have more energy to do more than just work, sleep, eat, repeat. Still, I’m so grateful that I have a job and continue to have health coverage. I know I am one of the lucky ones in our country (and the world) right now. I am blown away that there are so many people who are going through what i’m going through and they are doing it on their own without help and support. I want to live in a world where all lives are valued equally. A friend shared with me about “time banking” in a community that she was visiting. Basically, it’s like a services directory where you list what service you offer and everyone trades hour for hour. A one hour session with an attorney is valued the same as a one hour house cleaning. Why would we live any differently than that? I have to say that my illness (and the greater ills that are affecting so much of the world right now) has opened my eyes to many things that I was blind to before.
Another thing that has happened since July is that my dear, lovely, beautiful baby sister died on July 24th. She leaves behind two amazing boys - 21 and 18 - and a husband and many, many people who loved her. Having to grieve her death without being able to be in person with family and friends has added a whole other layer of frustration and grief to the situation. I can’t even imagine how people are dealing with their loved ones dying alone in a hospital room of COVID. We’re all being asked to ride out this storm in so many ways that feel like they are crushing. Yet, somehow we adapt.
And, in the midst of all the uncertainty, fatigue and grief, there is also so much light in my life. I trained to become an animal communicator through a 4 month class that started just a month before I found out I had brain cancer. Crazy as it sounds, I was able to attend the entire thing (except one class) and graduated in July. I’ve done about a dozen animal communication sessions since graduating and LOVE it!!!! Here is my website if you’re interested in checking it out: https://readingsbytoria.com/
So, I guess I’ll sign off for now. Wishing you many, many lovely moments where you feel deeply held and fully supported for just being you and being alive on this planet. There really isn’t any more you need to do but feel yourself being held. I say that like it’s an easy thing to do!!! It isn’t - at least it hasn’t been for me… until now. You all have held me in ways I would never have allowed had I not been so sick and needed the help so desperately. You’ve all taught me what it’s like to be human - vulnerable, resilient, fallible and loved. Thank you from the most deep reservoir in my heart. Please stay in touch and let me know how you are doing from time to time.
Much love
Toria
** UPDATE 5/24/2020 **
I've had both a PET scan and MRI of my brain and continue to be free of any more tumors. It is such a relief! Also, after doing a consult with the melanoma clinic at UC Health in Denver, I've decided to not do the focused radiation. I'm so relieved about that as well. I was not looking forward to having my brain have to undergo more trauma. Instead, I've put all my eggs in the Immunotherapy basket to keep the tumors from recurring. If it doesn't work, then I can always fall back on the radiation.
This coming Tuesday I start the immunotherapy treatment. They will put me on two drugs - Nivolumab and Ipilimumab. By doing both, they anticipate the side effects to be more intense. Things like tiredness, rashes, nausea are a given but there could be other things that would indicate my immune system is attacking things like my intestines, lungs, thyroid and pituitary glands as well as the melanoma. The hope is that my symptoms are manageable enough to tolerate four treatments. Then I would go to just the Nivolumab for the rest of the treatment which is for about a year. In a study that was just completed in Germany, they found that the combination of both immunotherapy drugs kept tumors from recurring in the brains of 70% of people for more than a year. Those are fantastic odds compared with what was possible before these immunotherapy drugs were an option. Basically, stage IV metastatic melanoma in the brain (which is what I have) meant a very bleak life expectancy. I'm so grateful to be alive right now when these types of medical miracles are available.
** UPDATE 4/30/2020 **
The results from the CT scan showed no other cancer! But they do want to do a PET scan because there were a few small nodules in my lung and liver that they couldn't tell what they were from the CT scan. They are likely benign and Dr. Moran, my oncologist, is not worried. YAY!!!!
My next steps are to have some focused radiation on the tumor site to make sure that no melanoma was left behind. The procedure is called “Cyberknife” and there is an excellent facility right near where I live. The procedure should not affect any of my brain function. Dr. Moran would also like me to start on a year long course of Immunotherapy. I’m still learning what this is all about but from what Dr. Moran said, it is where they supercharge my immune system to recognize the proteins that the Melanoma cells contain and attack only those cells. There are side effects in about 30% of people where the immune system begins to attack healthy cells like the thyroid, lungs, etc. If that is the case for me, there are other options I can try.
United Healthcare offers a second opinion service and I may also have one of the doctors at the Melanoma Research Center in Denver weigh in on the treatment. However, from what I can tell, the treatment Dr. Moran has recommended is pretty straightforward since I don’t have multiple metastatic melanomas that need to be treated. Also, it’s the treatment that President Jimmy Carter underwent in 2015 to eradicate his melanoma successfully!
Wow! What a relief. I need to continue to go in for checkups and imaging to make sure nothing recurs over the years but, for now, I can relax into knowing that “every little cell in my body is healthy every little cell in my body is well !”
I’m doing the happy dance video!
Here are the MRI pics of the tumor before they took it out. Look how big and deep that thing was!
Tumor 1
Tumor 2
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Hello dear friends,
I have some good and bad news to share. I was recently diagnosed with a recurrence of my melanoma. It was a sudden diagnosis and came about through a set of fairly strange circumstances.
Some of you may know that two years ago I was very ill. I found mold in my home which it turns out my system is not able to easily clear and I became quite sick. I was also under stress with a new job and caring for my son through a prolonged illness.
The doctors believe that my current melanoma came about from an initial melanoma tumor that was removed from my upper right arm 12 years ago. Perhaps not all of it was removed and so some of the cells remained dormant in my bloodstream. When I was so sick two years ago, and my immune system was compromised, they begin to grow.
About six months ago I was unable to sleep for more than a few hours a night. I tried all sorts of remedies but finally went to a psychiatric nurse and went on medication. I began experiencing mild paralysis on the right side of my body making it difficult to walk. I assumed this was a side effect of the medication. When my sleep and the paralysis didn’t improve, I went to my PCP who, thankfully, recommended a brain MRI.
The MRI showed a 2 inch tumor sitting on top of my left parietal lobe. One of the best neurosurgeons in Boulder happened to be available (probably because all elective surgeries were canceled due to COVID-19). Dr. Nelson chose the more difficult route of removing the tumor in situ so as not to break it open and potentially unleash more melanoma into my brain.
The very very good news is that it was a complete success. Dr Nelson feels certain he removed all of the cancer and a follow up MRI confirms this. What is a bit uncertain as whether there is melanoma elsewhere in my body. Still, I feel grateful to be alive and feel healthier than I have in years now that the tumor is gone.
While I am one of the lucky ones who has insurance through my work, the medical bills are none the less daunting. It would be a huge support to be able to cover my deductible ($5,800), healing of my immune system through a naturopath (not covered by insurance) and perhaps even some of my son’s and my substantial medical debt from the past two years ($30k).
There are so many people in need right now – and many more of them have needs greater than mine. Still, I find myself in the position despite having a good job of being someone unable to keep on top of my medical debt.
If you find yourself fortunate enough to have a little extra money in your life right now and would be willing to send some of that energy and love my way, I will use it well and promise to pay it forward.
Many blessings and lots of love to you all. Here are some videos and photos of this incredible journey so far.
Toria
Video messages from Toria:
- Pre Surgery April 4th - Video
- Post Surgery April 8th - Video
- Post hair wash April 9th - Video
- Dancing April 11th - Video
Some photos of my journey so far:
- Ready for surgery - being wheeled into the prep area
- Really ready for surgery - Dr. Nelson and Nurse Sally ready to begin
- Scar 4 days post surgery - warning, I look a bit like frankenstein with the staples
- Scar 3 weeks post surgery
- Max and Dr Nelson meet - after I got my staples removed