Radiation & Health Updates

They say a picture is worth a thousand words. This photo describes what my life has been like lately. I am not tolerating radiation; in fact, I had to cancel treatment this past week and have no idea if I can even continue – I’m not even halfway done. The only other option anyone has to offer me from here on out is chemo. The odds of it working are incredibly low, but the odds of it further harming (or killing) me are very high.

I have never felt so awful in my entire life. I fall asleep at the drop of a hat during the day and don’t wake up feeling any better. I spend 10+ hours in bed (waking frequently) and awake in the morning feeling worse than I did when I went to sleep. I have this horrendous cough that strains every muscle in my body, and often leaves me retching uncontrollably over the garbage bin. Nearly every time I try to talk, it causes a coughing fit that leaves me reeling and crying. I’m taking pain meds around the clock and am still in excruciating pain half the time. Getting in with palliative care or a pain management provider for the last few months has been yet another ridiculous headache that showcases our broken healthcare system.

I can do very little for myself anymore, and have such little energy or capacity that eating and cleaning myself are about all I have left in me. Even if I have an appetite, I can’t eat much, or I end up more nauseated or in a ton of pain. I grow out of clothes each week, despite losing muscle and fat… I’m retaining a ton of water which just adds to the discomfort and general feelings of illness.

I want to be healthy. Why is that so much to ask?!?!?! I want to decorate for Christmas, make Christmas crafts with the kids, bake, go shopping and not need to use a motorized scooter to get around. I want to be able to do hobbies I enjoy. Even to stay awake to be able to read a book. I’m not asking anyone to do these things for me. I want to be able to do them myself!!! It isn’t a big ask! …yet each day I feel weaker and lower on hope. I pray every single day for a miraculous healing. I’m alive, but this isn’t living. This is suffering and trying desperately to find any ounce of good or joy or pleasure.

I truly do not know what will come next. I don’t know if I will do treatment this coming week, if I’ll ask for a longer pause, or if the radiation oncologist will put his foot down and tell me we can no longer proceed. He’s already suggested I may want to stop and pivot to chemo instead.

My body and I have battled this storm for over 6 years now, and I’ve never been this lost, exhausted, or defeated. I know it must be easy to think or say, “Keep going, you’re so strong, you can’t give up…” but you’ve never been in these shoes. Imagine the sickest you’ve ever been. Now imagine being that sick for Months with no end in sight. And every day you feel worse and weaker. You want SO badly to get better, to feel something other than horrible, to LIVE.

I don’t want to give up. I don’t want to die. But this.. this isn’t “living”… this is trying every day to not die, to feel the worst physical and emotional pain day in and day out. And most people either see me as a lost cause and can’t hold hope with me, or invalidate my experiences when they say I’m not allowed to feel or say certain things because of the discomfort it causes them. Every provider feels the need to remind me how sick I am and everything that’s wrong with me. Everyone has opinions, but no one has the answer.

I’m doing my best to find any possible comfort amongst the incredible pain. I appreciate those who have reached out, and I apologize if I don’t respond or take days (or weeks) to do so. Please know I’m doing my best, but I just can’t keep up with anything anymore. If you want to help, please lift me and my family up in prayer. Pray for miraculous healing. For strength. For guidance. For peace.

I want to Heal. I want to Live. I need a miracle.

Starting Radiation Again Soon

Sadly, you’re not looking at a baby belly… this is a tumor-filled belly 😩 The last couple of months have been incredibly challenging. Just as I was starting to feel a little stronger a few weeks after surgery in August, other symptoms began to show up or worsen, and have only gotten more difficult to cope with since then.

I had scans in early October which showed continued progression. I haven’t been able to do much for integrative treatments in several months now because my body screams a hard NO!! whenever I try. I do push, because I want this stuff to work, I want to heal, but there has been no clear payoff with anything lately.

I have literally begged and pleaded with surgeons and other doctors to help me: specifically with a very large liver mass. Every single consult and plea has been met with a closed door, and sadly, little to no compassion. I had begged the surgeon in August to do everything he possibly could while he had me opened up, but he said he would only take the largest mass, and then we would discuss further interventions after I’d had some time to recover. However, when that time came, I received a hard No to any further care from him. I’ve consulted with multiple specialities and surgeons across different health care systems. None will help me. They see me as too high risk and a lost cause without much time left.

The only conventional provider I can find who is willing to try anything on the large liver mass is my radiation oncologist. I am set to start proton beam radiation this coming week, and the treatment course is expected to take about a month. I have no idea what to expect, but because of the large size and location, as well as involvement of the inferior vena cava, the rad onc is worried about how sick I could get. Idk how much I’ll be able to eat, keep down, detox, or digest… I already have terrible abdominal pain and pressure, and because of the restricted blood flow in the IVC, I get extremely short of breath, weak, with heavy, painful, shaky legs any time I bend at the waist or take even 2 stairs. Lymph and blood flow are restricted below the liver, so I have a lot of fluid retention, lymphedema, and more nerve pain now. Many mornings are spent on the couch writhing in pain for hours as I try to deal with the severe radiating pain down my leg, in my low back, and through my whole abdomen. Sadly, nothing really works to alleviate the pain.

What’s probably one of the hardest things to deal with is knowing I have a bunch of integrative tools at my disposal, but my body simply won’t tolerate them anymore. When I push, I’m met with horrible reactions that last days and only result in further tumor swelling/growth.

Needless to say, I have been very lost and simply incapable of doing much more than trying my damnedest to survive each day. Life barely feels real anymore.

I have SO many negative emotions toward certain providers and their lies, misinformation, inflammatory statements, and omission of extremely critical information over the last 6 years. I am working to process all of this, because I know it isn’t doing me any good. As both a patient and provider though, it makes me completely disgusted with the way conventional oncology is run in our country. There have been some angels in this hell, but unfortunately it isn’t the norm.

Six years in, and there are very few stones I’ve left unturned. Yet here I am, fighting for my life harder than I ever have, with seemingly few options remaining. I still believe, somehow, someway, there IS a path to true healing for me. I don’t know what it is. My senses don’t perceive it. But my heart and soul believe.

I don’t know what the next month will bring with treatment, or if I’ll have the capacity to keep everyone updated. Honestly, right now, I can Barely take care of my Very basic needs each day. Thank you in advance for your understanding, prayers, and support.

2 Weeks Post-Op

It’s been 2 weeks since my big surgery. The 7 day hospital stay was extremely rough, and recovery at home has been no picnic. I am slowly beginning to feel more human again, and am starting to be able to eat larger portions of food. Pain management has been a struggle, but is no surprise.

In total, I had 4 larger tumors removed: 1 from my vulva, 1 from the back of my right shoulder, 1 from my right gluteal muscle near the hip, and another very large (approx 16cm) one from the left lobe of my liver. In order to remove the large liver mass, I lost the remaining segment of my left liver, which contained around 40 nodules in total.

I woke up with an NG tube, the epidural they placed pre-op, a foley, a wound drain from my glute, countless bruises and punctures, 2 IVs in addition to my 2 picc lines, and 4 new, large incisions… not to mention all the extra cords for continuous cardio-respiratory monitoring. On post-op day #5, I had to have another wound drain placed in my abdomen due to fluid collection around the liver surgical site. This huge pain in my A stayed in place for 5 days until I was finally able to remove it.

As I stated prior to surgery, the plan here was “palliative,” so there was a good amount of stuff left behind, which I have continued to struggle to process, not aided by the pain those spots are causing. All of the pathology reports mentioned “Therapy-associated changes are present in the background” in the resected tumors. This means that the integrative treatments I’ve been doing did Something, but unfortunately, not enough (yet).

I honestly don’t know what else to say right now, as I’m simply trying to make it through the days with the pain and physical limitations, and spend quality time with Brandon and the kids. I am very tired and struggle to get or stay comfortable. So I do my best to support my body through recovery, unsure what my next steps will be. It’s incredibly difficult to maintain a positive attitude and strong spirit when the “experts” see and treat you like a ticking time bomb. But they are not me. They are not God. I am doing my very best to block out the negative noise and focus on my determination to live and heal. This isn’t to say there haven’t been a LOT of tears as I work through the grief and many other emotions.

Thank you for all of the prayers, well wishes, cards, gifts, and care. Once again, I’m sorry I can’t respond to every outreach. I/we appreciate you all ❤️‍🩹

Before: Front abdomen, with left liver mass pulling everything to the left

Before: Abdomen from side, looking pregnant 😔. The left liver mass was pushing my ribs far out, separating them, and separating my sternum. The nerve pain was terrible and it was putting excruciating strain on my back. It was also squishing my stomach like a pancake, so I hadn’t been able to eat much in months.

Morning after surgery, NG tube in place and barely able to move

The abdominal drain they sent me home with

Goodbye, abdominal drain! 👋 This thing was such a pain to get and have, and it didn’t want to go peacefully 😣

After: These abdominal incisions get bigger every time 😔

After: Glute spot (not pictured: drain puncture site)

Another Major Surgery Coming Up

I’ll be having Major surgery this coming Monday to deal with a number of tumors that have been causing severe, long-standing problems. I’m still healing from the scalp surgery and skin graft, but am in dire need of more surgery… Three different surgeons will be operating on me, in 4 different areas, but I will still be closed up with numerous masses remaining that they unfortunately won’t remove.

I have an extremely large mass on the left lobe of my liver that has been restricting my ability to eat for months, as it’s pressing directly against my stomach. My ribs are flaring and separating, muscles and nerves stretching and pulling apart, spine/ribs/back/muscles being strained, and I cannot get or stay comfortable in really any position.

An orthopedic surgeon is planning to remove a large and bothersome mass from my glute, and another from the back of my shoulder. A gyn-onc will be removing a very sensitive mass on my vulva.

There are numerous other masses in the abdomen and pelvis that the hepatobiliary surgeon does not feel are appropriate to remove right now due to increased risk of complications. Despite the fact they are all causing pain and symptoms, and they will be cutting my entire abdomen open, this surgery is viewed as simply palliative by modern medicine.

We are struggling immensely with the weight, stress, grief, anxiety, frustration, helplessness, and anger of all of this. I have been working SO UNBELIEVABLY HARD for SO LONG to heal. From February to June I was doing daily IV infusions between home and my integrative physician’s clinic. Doing so many therapies it would make your heads spin.. many of them helping me feel better and giving us hope that we were finally moving in the right direction. But somehow it all became too much and rather than helping me heal and feel better, tumor site pain suddenly picked up significantly, and the more I did, the more the pain and tumor swelling progressed. So I unfortunately had to pull back on almost everything in June, and have the scalp masses removed because I could barely sleep from severe pain anymore. I still haven’t been able to resume most of the therapies due to worsening of already severe tumor site pain each time I try again.

So now I’m in this place where the surgery will alleviate some suffering, but possibly not enough that will allow me to resume any of the treatments that were previously helping me.

No one in conventional medicine sees an answer for me. I’m struggling to get requested consults or considerations for newer or less invasive/less toxic treatments that could help me, but they’ll happily offer me chemo that has terrible odds of working and fantastic odds of killing me. The conventional oncology system is broken in our country. They seem to have zero interest in trying to uncover the true root causes, and instead spend billions trying to find new ways to treat the symptoms (tumors) rather than solving the underlying causes and how to reverse them while healing the patient as a whole. I shouldn’t have to spend nearly every waking hour of my life doing my own research, paying thousands upon thousands of dollars out of pocket for every integrative consult and therapy, and experimenting on myself to try to survive. I am not blaming any one institution here; it is Everywhere in our country (and many other countries as well). This isn’t to say I’m ungrateful for the treatments I have needed, but if true root causes were researched the way pharmaceuticals are, recurrences and stage IV terminal diagnoses would be nothing like what they are today.

It seems to me now that many people see me as a lost cause. As a story character whose fate was sealed with the original diagnosis. But I don’t, nor have I ever, seen myself that way. What I do see and hear and feel (deeply) is the fear and preconceived notions that people (typically providers) have about me. I am extremely sensitive to people talking to me and making treatment decisions as if my ending has already been written. I have plenty enough fear and grief already. I know the odds are stacked against me. But that doesn’t mean I don’t still believe in myself or in miracles.

We are struggling immensely with all of this. Despite all we’ve been through, it unfortunately just seems to continue to get harder. I have extremely limited physical capacity right now, mental capacity is beyond its maximum between the severe pain and stress, and I need to do an insane amount of preparation for surgery and my hospital stay. My body wants to rest but cannot find a way to get comfortable to do so, and my heart just wants to be with Brandon and the kids, but my mind pulls me in a million directions while the pain and debilitating fatigue are screaming at me no matter what I do. Brandon continues to work full-time and try to carry me, the kids, the house, and everything else.

We appreciate your kind words, prayers, and support, but please understand we are drowning and oftentimes trying to respond to even a quick message is just too much for us right now. Please understand it is Not personal, and your kindness is noted, taken to heart, and very much appreciated.

As always, I will do my best to share a post-op update when I am able.

Thank you ❤️‍🩹

Proton Radiation Complete + Updates

Proton radiation is finally complete! I finished my 8th treatment today and am very glad to be done! The treatment area is tender, tight, and sore, and the increased fatigue has been noticeable.

I’m doing my best to focus on the achievement, but the victory feels short-lived, as I have to go back on Friday for an abdominal MRI. I am also scheduled to have a procedure called a hepatic artery embolization on December 9 to deal with the 2 large liver lesions. I had hoped for the possibility of a non-invasive option, but I’m unfortunately not a candidate for that procedure at this time. The embolization will require a hospital stay, and side effects and recovery could last up to 10 or so days. The hope with this procedure is to cut off blood supply to the masses, so that they die… sometimes patients need more than 1 procedure to make this happen. I am really nervous about it all, but relieved to have an option that is less detrimental than another major surgery or more radiation.

I have barely had a chance to think about or plan for Christmas. We still have our Halloween decorations up. Normally by now we’re done decorating, wearing our Christmas jammies, and watching holiday movies. To be honest, it’s been tough to get in the spirit this year… it’s been a non-stop tsunami of crap these last couple of months, and it unfortunately continues. I can barely keep my head on straight.

Still praying for a Christmas miracle to be cancer-free. Healed. Healthy. Home and happy with my family. 🙏❤️