Fox and Broom

A mom's adventures in keeping healthy, keeping her sanity, and making stuff.

Archive for the tag “don’t ignore stage IV”

Snake Oil

On February 12, I had an unusual experience. I had been set up with an appointment to meet with a lady who had helped one of our handymen with cancer. I figured it was not a terrible idea to check it out. If anything, maybe I could add foods to my diet or other advice.

Disclaimer: Before I get comments telling me to beware supplements that could harm my chemo process, I am well aware of that and I research all herbs and supplements before trying them. For other chemo patients, one of my best resources has been the Sloan Kettering app “About Herbs.”

I listened to this lady, let’s call her “X,” for nearly four hours. I should have left within the first ten minutes. I know some people are all for this, but if I go with any sort of naturopathic help, I want someone who will treat me with respect and who is actually knowledgeable about cancer. More on that later.

She mostly spoke about herself and her accomplishments. X had created the cure for malaria, Parkinson’s, Ebola, and saved the Tri-Cities from Ebola by stopping it in Yakima. She will be creating the cure for Coronavirus. She expects to be killed by the government for her coronavirus cure.

Oh yeah. This post absolutely requires memes.

Mexico loved her and wanted her to stay. She had saved a billionaire and his son in Idaho. He offered her something like a million dollars to go on TV to discuss her treatments. She declined Mexico and the Idaho rich man. After all, she is not in this to make money.

X explained the origins of some of today’s diseases. Parkinson’s was created by the Italians, along with the cure. Canada created multiple sclerosis. The United States is spreading cancer via chickens and eggs.

Tyson started injecting things into their chickens that causes cancer. As a company, they are super secretive about what they do to their chicken. However, most companies are secretive about their processes.

Tyson collaborated with McDonald’s to spread their cancer-causing chicken meat. These agents travel from the hens to the eggs, making eggs a carrier and the new chicks are contaminated. Therefore, all chickens and eggs are bad. Just handling chicken meat would allow the cancer-causing salmonella to break the skin barrier and enter the body. Sorry to my chicken peeps.

I would like to point out that that is not how salmonella or skin work. Skin is our barrier to bad things. One should absolutely wash one’s hands before, during, and definitely after handling any raw meat or eggs. Salmonella can make you very sick if you eat raw eggs or meat or if you were to use your hands to eat food without washing them or rub your face without washing your hands. Good hygiene is important.

Salmonella does not contain DMSO or other skin absorbing agents.

Her statements about eggs and chickens were undermined by the fact that her houseplants all had eggshells in the pots.

She went on to speak about fellow researchers who had been killed by various governments. Mostly for cures, one for cleaning a river.

She spoke about going to Guatemala to help people. This is admirable. I can get behind helping those who are struggling. It’s really the only admirable thing about this whole experience.

After about 2.5 hours of hearing of her accomplishments, research on chickens, and murders, she finally turned her attention to me.

“What type of cancer do you have?”

“Metastatic breast cancer, stage IV.”

“Oh! That is fine. I have cured people with stage V breast cancer.”

There is no stage V breast cancer. For a researcher, she was lacking a lot of very basic knowledge. This comment infuriated me. I am at the end of the breast cancer spectrum. I do not like to be taken lightly.

X went on to explain how cancer starts in the body. “Cancer always starts in the brain. It then goes to the breast. It is a virus.”

Wait. What?

So, admittedly, there is a lot that is unknown about cancer. Why it starts, for instance. There are a lot of thoughts: diet (chickens!!!!), environment, exposure to poisons and radiation, and more. Some of these have been proven as true.

What is not true is that comment on cancer starting in the brain. If it were, everyone with cancer would have metastatic brain cancer. My cancer started in my breast. Cancer is not a virus. Cancer cells are mutated cells. In my case, it mutated my breast cells. Those cancer cells then spread to my bones.

X insistently tells me, “The cancer virus then goes into your lymph nodes and can spread from there.” This was actually a true statement. She takes out a crystal to figure out where my cancer is in my breast. I was too dumbfounded by this point to tell her that my cancer was no longer in my breast. She made her own assumptions and was too intent on running with them.

“Ah! It is here and here.” She pointed to both sides of my left breast. Now, I had told her earlier that my cancer had started in my left breast and was not in my right breast. It wasn’t like she had to look too hard.

“And you did not have a mastectomy! Very good for you.” I decided not to tell her that a mastectomy would have been no help for me.

“I will now use energy to see your cancer better. This energy comes from God. I am not an evil witch.” Ok. So most of you know that I like crystals and energy. Multiple religions use them. Also, witches are neither good nor evil, just people.

“Oh. Your cancer has started to spread to your lymph nodes from your breast. It is very good at this moment, but it must be taken care of. However, your liver is not very good.” My cancer skipped right over the lymph nodes and went straight to my bones. The lymphs are clear, apart from the edema on my right side and that is just fluid that has started to drain to my heart to be filtered out. I had to learn how to massage that out – but that is a story for another day. She was actually spot on about my liver. My last treatment had failed miserably and I had many tumors on my liver. My new treatment seems to be working very well and I have high hopes that my next CT scan will show a prettier liver.

“I can get rid of your cancer and I have a cleanse that will help your liver.” I realized that she thought I had poisoned my liver with some heavy partying or something along those lines. It couldn’t be from my cancer that is “not that bad.”

“I will give you some instructions and you must follow them or it will not work. Are you willing to give up chemo to start my treatment?”

Me: “No. I am not willing to stop my chemo.” She was actually taken aback by my response. She had really thought I would do this. I guess she had spent a lot of time telling me why doctors are bad and maybe expected me to just be shepherded into her program. “Why do you think this chemo is working for you? You have said you have been on seven different chemos, why would you think it is working?” I told her that my labs tell me it is working. X responded, “What about scans? What would your scans say?” I told her that I had just had three sessions with my new treatment and was not ready for scans at this time.

She started to talk to my mother-in-law, B, instead of me. As if B could make me ditch the poison that is keeping me alive. She already made it clear that she thought I was stupid, now she was becoming downright disrespectful. She talked to B about her treatments that she would still give me copies of. However, I should not do them until my chemo treatments are done. “How many more treatments do you have with this chemo?” “Until it stops working.”

She was so frustrated by this point. She really does not have any true understanding of MBC. “Why have you been in treatments so long? Why are you on this chemo that has no end?” I was just quiet. She wouldn’t really listen to me, anyway. She was a “great researcher,” after all. I was a nobody who didn’t understand my own illness.

She gave me papers on her treatment. Yes, she treats all cancers in the same manner. Because all cancer starts in the brain, therefore it can all be treated in the same manner. I was to begin a vegan diet with all organic fruits and vegetables. For my liver, I was to fast for two days and use a cleanse made with distilled water and lots of lemons. Then do a coffee enema. This would also make me poop out the chemo and the cancer.

For anyone who might not know, I suffered from cancer-induced anorexia. It took a long time to get my eating back in order. I am not going to fast anytime soon. I don’t eat a lot of meat, but I depend on eggs and cheese for protein, especially in the morning. I will make vegan and vegetarian dinners, but I have no intention of becoming either. I have enough issues with not being able to taste food that I am not willing to give up the things that I can taste.

Coffee will never go up my ass. If you do the enemas, I don’t really care. I won’t.

We thanked her and left. After four hours. Poor B was so chilled that her Reynaud’s had turned her fingers purple. I told her she should have mentioned something and we could have left earlier. It was a relief to both of us to skedaddle.

The next day, she sent a text to my father-in-law, J. “I am so sorry that your daughter is not willing to stop the chemo that is poisoning her.” It was a very long text about my mistakes in believing and liking my oncologist, how I was being swindled into thinking the poison would save me, yet I had been on 7 chemos and none of them had worked. I should explain that I had said I had been on about 7 treatments, not all were chemo. She just didn’t listen to it.

I had realized as she was talking to me that she was displaying narcissistic tendencies with manipulative speaking. Speaking to my in-laws instead of to me really brought that into the light. She wanted them to believe her program would be better and she seemed to think they could convince me. I have my own mind and my own ideas. I have also done way more research on my own cancer than she has done on cancer at all.

I really was hoping for some decent alternative ideas that I could do along with my chemo. This was the most disappointing 4 hour experience of my life. At least I can tell stories of the Crazy Chicken Lady.

2020 February Legacy Retreat: In Memoriam

One of the hard parts of meeting people with a disease such as Stage IV Breast Cancer, is death. Thirty-one families were served at my retreat. Four of my sisters have passed since the Retreat. Gabriel has had a hard time with this. I told him it never gets easier.

Cassie Newman, February 16

Leah McDonald, February 21

Andrea Burch, February 22

Crystal Baird, March 4

I am so thankful that their families have the memories from this Retreat.

Fuck cancer.

Third Cancerversary

I have made three years. Fuck you cancer. I feel like this is a big ‘versary for me. I don’t know the exact statistics, but a large number of MBCers are only given about 3 years. Fuck you again cancer.

It has been a bittersweet year. I am thankful to still be here, but I have lost a large number of friends to this damned disease.

Marg was working on having two books published. Both of them were about Ann Lowe. One was to be a children’s book, the other was an adult book. If you don’t know who Ann Lowe was, please look her up.

Beth had planned on a girl’s day out horseback trip. I will do one in her honor with my kids.

Gloria had brain cancer. It took her from her family and friends way too quickly.

Mike had leukemia. He was a survivor. He was never supposed to leave before me. He was my personal trainer, mentor, and friend.

So many more.

I would love to give you the statistics on MBC, but I wouldn’t be able to give the correct numbers. Supposedly, I have a 27% chance of making it to the five year mark. However, metastatic breast cancer numbers are off. They only include the people diagnosed initially with MBC. These numbers do not include people who were diagnosed with an earlier stage of breast cancer who were then diagnosed later with Stage IV.

I feel like this post is more harsh than my previous cancerversary posts. I am dealing with pain at the moment and I am sure that is making me pretty snippy. Funny enough, the pain is not actually cancer-related. It’s a little ball of fluid (edema) that has decided to live in my ribs. If you look up edema, you will mostly find articles about legs and arms. There isn’t much info about abdominal edema. I get to have the weird one.

As per my usual, I went through a few different treatments this year. My current one is working really well for me. My biggest issue is that is a once a week chemo which then requires two days of going back in to get Granix shots. The Granix keeps my white bloods cell numbers up. My treatment is Paclitaxol or Taxol for short. Having to plan around three days of appointments has been difficult, bu it is keeping my cancer tame and I am genuinely thankful for that.

The year has not been full of just loss. Grief can just feel bigger than the good things at times.

I met my biological mom and brother last August and my sister and a niece just a few months ago in May. I have also met a cousin and have come into contact with numerous aunts, other cousins, nieces, and nephews. My family nearly doubled by coming into contact with my birth family and that is saying a lot. I have a ton of cousins and now I have a ton more. My heart is fuller.

We sold our wonderful little house and bought a bigger house with my in-laws so we could keep an eye on my in-laws. It was a good move, but it was also hard to leave my house.

Gabriel took me to Greece. It was amazing and magical. I really need to write about it and post pictures.

I took Samedi on a surprise trip to Orlando. I told him he had a doctor’s appointment and was going to have shots. Then we wound up at the airport. I had spent two years saving up for this trip and it was absolutely worth it. He had a blast at DisneyWorld and, even with rain, he loved Universal Studios.

Here’s to another year of staring cancer down, savoring the small things, and celebrating the big things. As always, Fuck Cancer.

Having fun with a new wig.

Changes

It has been a really long time since my last update. My world has been full of lots of changes since my October posting. Some good, some not so good, some heartbreaking.

I started a new treatment called Xeloda in October (or maybe September). This has been one of my favorite treatments so far. I feel so much more normal than I have in the two and half years since I started treatments. It does have a side effect called Hand Foot Syndrome. It dries out the skin on the hands and feet and can cause cracking and sore appendages. I had to have my dose lowered due to having trouble walking. My feet had developed very dark markings. I had thought they were bruises because they were aching so badly. The pain only last three days, but the marks remained. I found out later that the darkening is a common thing among people using Xeloda. I saw it was mostly hands and fingers, but feet are in there also.

One of the funny side effects of Xeloda is that it promotes hair growth. My hair is definitely not long, by any means, but it has been growing much quicker than it ever has in the past. It seems to be a little thicker. I thought that was in my head, but my stylist agreed with me when I had her shape my hair a little. I had a natural fauxhawk going on for me that I didn’t much mind, but my the hair in the back was starting to look more like a mullet. Sorry to the mullet-lovers, but the look doesn’t suit me. My hair has gotten longish enough that it now lays down a bit better. I kinda miss my hawk. I got a few compliments on it from random strangers.

No matter how much I like Xeloda, nothing lasts forever. Especially with my treatments. I will be moving on to a new treatment by the end of this month. My scans have been showing as stable, even showing a bit of regression on my bone scan, but my CA 27.29 (cancer antigen marker) has been moving slowly higher. It is still much, much, much lower than it was at this time last year, but it is starting to concern my oncologist. Sometimes, there is action going on in the marrow of the bones that the scans can not see.

Another big change was moving. We sold our house and purchased a much larger house with my in-laws. Much larger. It is twice the size of my old house. I know it seems weird to move in with the parents, but it is a mutually beneficial move. They are not getting younger and my disease will never go away. In this way, we can take care of each other. Our new house has three levels. Three of my boys live on the top level, the grandparents are on the main level, and Gabriel, Max, the dogs, and I live in the basement. It’s a really nice basement. We have access to the backyard and a very lovely patio. Our area is closed off from the main level, allowing a bit of privacy. Nothing is totally private with four kids. I have my own laundry room and a coffee/tea table. The new schools are very nice. I kept Eldest at his old school as it is his last year there before high school.

Some of the changes have been sad. Last summer, I found out that my personal trainer had passed away. Mike was one of those people who makes your life brighter. I hired him because he had just finished treatment for leukemia and I had just gotten over most of the sickness from my pregnancy and birth of Max. I figured he would understand getting over an illness. Mike helped me find my strength and empowerment again. Even after my training sessions were done, we kept in contact and would visit at the gym. He was one of the first people I talked to when I got my diagnosis. I went through the dark time and when I was able to move again, I went back to the gym to get my legs and arms working better. He would take me aside and pray with me. I also did the same for him, but I didn’t tell him that. Last year, he had started to look sick. He didn’t talk to me about it, but I saw it. The last time we chatted was when I ran into him at the Cancer Center after my final round of radiation on my right eye orbital. I found out he passed away about a week later. Fuck cancer.

One of my best friends lost her mother to brain cancer. She was diagnosed last summer and passed in January. It was so aggressive and fast. It honestly scared me at how quickly it took her. Fuck cancer.

On March 5, I found out that Bekah passed. She was the person I had termed (in my head) as The Other MBCer in town. She was too young. She was kind and motivated. She was inspiring. Fuck cancer into infinity. Her husband wants to set up an MBC Foundation in her name for local people and eventually have it reach people across the state. Her GoFundMe is still collecting if you want to help with her funeral costs and to help him attain the funds for the Foundation.

On a more positive note, I have a lot of adventures planned for the rest of this year. Gabriel and I will be going to Greece in less than a week. We had a little bit leftover from our house sale and threw a mental dart at a world map.

Two weeks after we get back, I will be taking Sam to Orlando to experience Disney World and Universal Studios. I have been saving up for this trip for two years. As of right now, he has no idea we are leaving. He only knows that he has an “appointment” during Spring Break. He asked if he was going to have to have shots or a blood draw. I said yes to both because I am an evil mother.

My sister, Danielle, will be coming to visit me in May. I am super excited about that. I am trying to plan a trip to her area this summer.

We also have camping and family outings in the works.

Before I end this blog, I had an unbelievable change happen in January. Sam’s whole exome genome testing was finally approved by my insurance company. I have been fighting for this test for about four years. I understand that the insurance company is reluctant to approve this type of testing due to the lowish findings rate (30 – 40%), but I am at the end of my options. Our next step would be a muscle biopsy, which is twice as expensive and way more invasive. For those not in the know, Sam was born with a congenital muscular disease. For Sam, it means that he gets tired more quickly and isn’t as strong as his peers. For us, it is constantly worrying about his weight, his social interactions, working on his gross motor skills. He is currently in physical therapy and is testing out as around a 5 to 6 year old in physical skills (he is 8 right now). I am hoping for a diagnosis that can let us know if there is anything more we can do to help boost him up. His DNA was already on file and he did not have to add anything more to it. Gabriel and I flew to Seattle to put our DNA into the batch. Whole exome means that the parents are involved and it will look into our separate genetic lines for answers. Please cross your fingers for us that this will lead to something. We will get answers in three to four months.

One final thing. Of all the things I have learned this year, the hardest and the best thing is to not put off your dreams. Some dreams are expensive, but dammit save your pennies for it. Some dreams need a little extra time. Make time. Don’t put off what makes you happy.

And again, fuck cancer.

Obligatory Pinktober Post Year 2

Yesterday was my 42nd birthday. I didn’t think I had a big chance of making it to my 40th, but here I am. Suck it cancer. Now on to my more serious thoughts about Pinktober.

Even before I was diagnosed with metastatic breast cancer, Pinktober put a bitter taste in my mouth. It isn’t awareness that is needed. Buying pink items will not usually help fund what is really needed. We have the world at our fingertips. You can do quick research on any company/nonprofit that is claiming to donate funds for breast cancer cures before purchasing pink items.

Unless you have been under a rock for thousands of years, I am sure you have heard about breast cancer. “Breast Cancer Awareness” is not needed. What is needed? Support. Research. More research. Proper statistics for Stage IV.

In the two years since my diagnosis, I have come to realize that I am one of the lucky ones to have an amazing support system. I have family, friends, and a great local support group. I have come across people with MBC who have only Facebook support groups. No family. Few friends. No local support groups. This means they have to depend on taxis or public transportation to get to appointments. Some cities have special transport for cancer patients, but this is not a service available everywhere. They go through doctors appointments, treatments, all the exhausting and overwhelming information on their own. These people are stronger than I am. I’m not sure how to fix this. Local support groups are so important, but they also take a lot of work to get going and keep going. If you know someone who might not have much support, let them know that you are cheering them on. Have a box sent to them from one of the many breast cancer foundations out there. One of my favorites was the gift box from The Gracie Foundation. Ford Warriors In Pink has also given me some things that have helped. They funded a free year of meditation from Headspace and I have also received two weeks of free food from Green Chef (probably my absolute favorite box meal company, but oh so very expensive).

These are only two companies. There are many more out there that will send out small gifts to patients. Some nonprofits offer experiences rather than gifts. Send Me On Vacation is one that I can think of right off the top of my head. In any case, receiving an unexpected gift is always a spirit-lifting experience.

Research. Probably one of the most overlooked, kind of important things regarding metastatic breast cancer. MBC kills 100% of the people who have it. When it will get you is kind of up in the air. Some people go quickly and some metsters last for 20 years. It depends on how each person reacts to the available treatments.

I am not asking for research to stop on other types of cancer. All research is important. I just want more. I’m greedy like that. The hard part about this request is that every single person with cancer has a slightly different cancer. We can identify cancers due to where they start and how they behave. After that, it seems to be a guessing game. A person’s genetics can affect how treatments work. So can the makeup of the cancer. For breast cancer, that can be hormone (estrogen or progesterone) positive or negative. Some people are only positive on estrogen but not on progesterone and vice versa. The HER2 protein can play a role. About 1 in 5 cancer patients are HER2 positive.

With all these factors and more to consider, I understand why cancer research is hard. In the past few decades, we have drastically expanded our understanding of cancer. And it just isn’t enough. There is still so much more that we really don’t understand. There are studies going on that are really exciting and could lead to new treatments. If they are funded enough to continue their research. Organizations like Metavivor help to fund research. This is why I choose to donate my birthday to them every year. You can also give on their site or purchase something from their store with the proceeds going to help people like me.

The MBC Project is also working on research. In fact, if any mets sisters or brothers are reading this, get your butts in gear and sign up. They will ask for information as well as genetic material (spit and blood). Even if we will not benefit from it, this type of research could help future generations.

Statistics….

Metastatic breast cancer counts are off. The numbers should show as higher, but the majority of people who had been diagnosed with early stage BC are not counted in the MBC stats. Why? I have no idea. I can tell you that approximately 1 in 3 people diagnosed at an early stage will wind up battling for their lives later on with stage IV. Only about 5% of people originally diagnosed with BC are metastatic at the get go. By not counting the people who were diagnosed at early stages, this makes MBC seem insignificant. Rare, almost. Like a unicorn. Except it isn’t really a unicorn. It is a goat in disguise. More common than one would expect.

So, if you like pink, then buy it. I just ask that you consider where your “donation” is really going. It takes just a few screen presses to make sure your money really is making a difference. If you want the item anyway, go for it. All I ask is that you also consider helping in some way. Support. Research. Statistics.

The Day

I have been working on blogs about my Paris adventure, but I wanted to put up a quick post for today.

A year ago today, I found out that my pain was definitely not caused by a pulled muscle. A year ago today, my life turned upside-down. A year ago today, Dr. C told me that I had metastatic breast cancer that had spread to my bones. Stage IV. No cure. A death sentence.

It isn’t an anniversary that I want to remember. I was in agony and losing weight. I had gotten to the point where I was having trouble walking. I was exhausted. I was angry.

My first thoughts were for my kids. I couldn’t leave them. Not yet. I very much want to see them grow up. I very much want to see what kind of humans they become. I also, maybe selfishly, very much want them all to remember me. Really remember me. Not just hear about me from other family members or friends.

After my diagnosis, I went downhill fast. I honestly thought I wasn’t going to make it to my birthday in October. I believe my children and my anger brought me through that time. The radiation treatments helped with my pain and my hormone treatments helped to get my cancer somewhat under control, but it was my children who got me through the other things. I thought of them as I forced food down my throat. I thought of them as I forced myself to reclaim my muscles and start walking again. I thought of them as the worst of my symptoms started to fade and now, a year later, I am not the skeletal, sickly, creature that cancer wants to make me.

Now, I enjoy eating again. I have been working on taming my garden that went out of control. I walked miles and miles in Paris. I took my oldest son to Disney World and Universal Studios. I walked a 5K, which I didn’t think I would be able to do again. I have hope that I now have years instead of months. I have met a lot of the goals that I set for myself last year at this time. Every time I cross one off, I get a feeling of vindication. Fuck you cancer.

Living with cancer means fighting everyday. I am a warrior.

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