I apologize for the amount of time it has taken me to write this post. The idea of being on any sort of digital device has been extremely difficult for me this past month. I'm not sure if it is due to the effects of the whole brain radiation, medication, the cancer in the brain, or a combo of all. As I lie awake at night, I have written out a blog post in my head many times---I just can't bring myself to sit at a computer to type it out. But, I REALLY want to update everyone and I know so many are praying, which I am extremely grateful for. So here's what's happening.
On Suffering:
Never have I dealt with the amount of suffering I have been through this past month. Drew and I have often said, that we wish we could just have one bout of suffering at a time, instead of the storm that has been pounding down this past month. But, I know in the end, the Lord is going to use it. I already have SOOOOO much more compassion and empathy for others going through such difficult pain and trials as this, so I am sure the Lord will be able to use that in the future. For one, I had no idea that the whole brain radiation would cause this much difficulty. When I went through the 10 treatments, it seemed like it would be easy peasy. It only took about 5 minutes each time. But the aftermath has been quite awful. First, the dexamethasone side effects (apparently I have all of them) have been brutal. They have you take that to help with the brain inflammation. I didn't get any sleep for about a week and a half. I am being weaned off it now, and am finally beginning to get some sleep. I have been getting about 4 hours each night recently (which feels amazing), but last night I got 5. So, I feel like that will continually get better. But also, the effects from the brain radiation, are not what I expected. I have a really bad sunburn-like thing going on on my forehead--it feels like it is on fire, blistering and peeling. But honestly, that is the easiest of all the things happening. The muscle weakness/fatigue is unreal and is probably the most difficult issue for me right now. When I try to move my body, it feels like I weigh about 1000 lbs and am trying to move through thick molasses. I know part of it has been due to being extremely active just in June, to barely being able to get out of bed for a month. Today I have been determined though to move as much as possible. At the time of typing this, I have 5000 steps, which is crazy amazing right now. I am praising the Lord for that.
I had a spinal tap two Fridays ago. They told me one very rare potential side effect would be a cerebral spinal fluid leak. It ended up happening to me, and that was the most misery I have ever been in. Basically, it felt like (even when in bed), the entire room and bed was spinning. The nausea was unreal and I was literally begging for Jesus to come back. I am so thankful for all the prayers that were going up for me during that time. By Tuesday, which was when my appointments at MD Anderson were scheduled, the symptoms of that miraculously went away. We had decided if they hadn't gone away by that day, I would get a blood patch between appointments at MD Anderson. I am so thankful that wasn't necessary. I couldn't stop praising the Lord for bringing me out of that.
I am not going to type out the list of all the suffering happening right now. I just want to say I have such a different perspective for it all. And I have been through a LOT (If you go back to September 2012 in this blog and start reading, you can see what all the Lord has brought us through). I don't want to complain though, and I am trying to focus each day on the little joys throughout the day. I am just SOOOO thankful for prayers.
Joys:
I have felt so extremely loved by my friends lately. So many have texted and sent cards. Please know I have read and treasured each one. I know I have missed replying to so many. My brain isn't working at optimal level right now and to be honest typing on devices is so hard right now. I am so dizzy. On Thursday, I had a birthday and so many made me feel so loved! Friends and family dropped off cards and gifts and texted. Also, a couple of my friends delivered the most amazing gift baskets I have ever received, with cards, gift cards, extremely thoughtful gifts, handmade gifts and so much more. I could not control the tears that poured out of my eyes as my friends showed me the list of people who contributed and showed me all the EXTREMELY generous thoughtful gifts. Literal streams of tears. And my friends know me very well---one of the things that I look forward to lately is very specific food--it is definitely one of the things that brings me joy. And the gift basket included gift cards to all of my favorite restaurants. I love the tea, bath stuff, I have been slathering on the lavender body butter on my forehead, and just love it all. Seriously this was the most thoughtful gift I have ever received.
Friends organized and drove me to my daily radiation appointments (I can't drive for at least 3 months), brought delicious meals, a church friend made a blanket/quilt that is so soft and cozy and dropped it off and more. Y'all don't know just how much joy you have brought and I can't type enough words to relay my gratitude for your kindness and generosity.
An aunt sent me voice texts with encouraging scripture and words, as well as an email with healing scriptures.
Diagnosis:
What's happening in my body is the breast cancer is now in my brain. It's in the dural space, the falx cerebri and in the actual brain. It sounds really bad, but the stuff in my actual brain is pretty small. It's what is in my dural space that caused the seizures. I have had SO many tests lately and more are still being scheduled. I have seen neuro oncologists both locally and at MD Anderson, as well as my regular oncologist and radiation. The plan going forward is to start a new drug, that crosses the blood brain barrier. It is a drug that requires infusions every three weeks. It's called Enhertu, and the plan is to start it on August 5th. Before then I will have an echocardiogram, and a PET scan. I will have a PICC line installed for the first couple of infusions, and then eventually get a port. The MD Anderson doctor said that the MRI definitely looks suspicious for leptomeningeal disease (LMD), but at this point, the treatment will be the same. Often you get a port in the brain and receive drugs that way too, but we are just going to start with Enhertu first, since many have had success with that. Prayerfully, the treatment will be effective, with low side effects so I can stay on the drug as long as possible. The good news is the the MRI of the spine didn't appear to show cancer. They tell me I am going to need MRIs every 4-6 weeks to monitor my brain to see if it is responding to treatment. They said that the Enhertu will probably take about 6 weeks to being to show response in the brain. I have already lost my hair due to the brain radiation--otherwise, I would lose it with Enhertu anyway.
Alternative/integrative cancer care:
For those who know my journey and know me, you know I have researched exhaustively about my specific cancer. I have tried about every natural/alternative treatment there is. I say this because after my first post, a lot of people sent me alternative treatments, supplement recommendations and more out of love. With my brain already overwhelmed, it was stressful and difficult to go through everything, but I know it is totally out of love and I know I would feel compelled to do the same thing. It has been a very lonely and overwhelming time since my stage iv diagnosis in 2022, trying to figure out how best to get rid of this cancer researching all by myself. I have read SO many books, read a ton of scientific papers and research, gotten opinions at alternative clinics in Mexico (and replicated those treatments locally) and done so much of my own research. I am a research fanatic. I have seen functional medicine doctors, do hyperbaric, PEMF, red light therapy, saunas, cryo, ozone, off label drugs, supplements, high dose vitamin C infusions and more. It gets very time consuming and expensive to be honest. But, if someone wants to spend the time and do research to send me a detailed protocol of what they think I should do (just keep in mind I have likely already done it), I am willing to do another look and start over again. I haven't been able to do High Dose IV Vitamin C all month due to all the appointments and the way I have felt, but honestly I feel like out of everything I have done, it is the most helpful. So, my plan is to start that back up ASAP. I have an ozone machine and hyperbaric at home and am planning on beginning that daily again. My cancer is breast cancer (stage IV, ER+ her2 low, with metastasis to my liver, bones, and brain) for those wanting to research. Some have sent me things specific to various brain cancers, like glioblastomas or others---that is a different cancer than what I have.) I have even put everything I have done into ChatGPT and asked for recommendations. It basically recommended what I have already done. Just wanted to put that out there, because I know there are people who love me who are thinking about this sort of stuff.
Prayer requests:
- That I can begin to move my body more and feel less weak/lethargic. It really scares me, because I hope it is just side effects from radiation and medication and not my body trying to shut down. :-( I need to focus on these verses:
- That this treatment works, I don't have the bad side effects that I have read about, and that I can stay on it a very long time due to its effectiveness.
- That the Lord heals my body of this cancer completely and miraculously. I want to share a testimony of God's healing.
- That I can get back to being my normal active self, working out, having an awesome diet, and gradually get back on my supplements and integrating alternative treatments again.
- That none of this stuff negatively affects Drew's ability to work.
- That all these drug and brain radiation side effects go away, so I can get normal sleep and movement.
- That is the Lord has another miraculous treatment I have not yet tried (or maybe even that I have tried, that he wants me to re-implement), that it is made clear and known.
- That the kids' faith is made even stronger through all this, and they feel peace, knowing the Lord is sovereign over all this.
