Fox and Broom

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

Archive for the category “Cancer”

Whole Brain Radiation & Me

Whole brain radiation sucks ass.

Seriously. I have had all types of radiation. Upper thoracic, skull (not brain), sacrum, right shoulder, liver, left eye orbital, right eye orbital, targeted brain tumors. I probably left some out. The side effects were rough on all of them, but I was able to work around most of them.

WBR was different. In my previous post, I talk about the events that led to the decision for this treatment. The aphasia happened only once after I started rads. It was during an online doctor meeting for Sam, of course. Couldn’t have been better timing. I was lucky that Gabriel was working at home and not in a meeting of his own. I couldn’t stop saying, “musk-les.” I couldn’t pronounce “muscles.” I was able to choke out a “help” to Gabe. Aphasia is sneaky and frightening.

I still get scintillating scotoma. Not as often and not always with a headache. At the moment, this is what has been keeping me from driving. I can’t see through those damned shapes.

WBR wore me out. Mildly at first. I started to look forward to the weekend break to get my stamina up enough to at least do laundry. I had 10 total treatments from May 18 through June 2. By the end, I was a mindless mess, too tired to get out of my chair, help with dishes, or read to my boys.

Radiation treatment will take about two weeks to fully end after the last treatment. Since June 2, I have had awful side effects. I, at least, remembered after the first week to apply liberal amounts of vitamin E to my head. I still have scabbing, but it could have been worse.

And… it did get worse. I had ZERO idea that it could be possible to have the skin around my eyes burn. I knew my eyes might be affected. I was told my vision could change. I have been washing them often, putting in eye drops, and slathering vitamin E on my face (safely). The skin around my eyes is red and has a lot of tiny white peelings. So sexy. To make it even better, my eyes are always weeping and the skin resembles alligator skin.

Then… my right ear popped very audibly and I had fluid and blood come out. Seriously. What. The. Fuck. I won a trip to Urgent Care and a double ear infection.

Probably one of the harder side effects, mentally, wasn’t even from radiation. I had to take a steroid twice a day to help cope with any pain from my brain swelling due to rads. The steroid caused my body to swell up. My abdomen and my face resemble an egg. It wasn’t comfortable and I really didn’t look like myself. I was given a schedule to reduce and get off the steroids. My last dose was June 10. Such a relief.

Steroid Bloat With Alligator Eyes

What these after-effects also led to was less time on social media, not so terrible. If you are trying to contact me via Facebook, I check messenger about every other day or if I think about it. I also contacted fewer friends, not so good. I’ve been reading more, which is nice. I have been more introverted than usual. I have a few friends and family who wrote letters to me before and during my treatment. I need to finish my letters back to them. They were very much appreciated.

The steroid bloating has gone down a lot. I don’t feel nearly so uncomfortable. However, without the steroid to check it, my pain levels have risen. Currently, I am fine with that. I would rather take pain medication every other day or so than to deal with an egg head and body.

My eyes have also cleared up a great deal. I still use eye drops multiple times during the day. I still have scabbing around my head, but it is now more itchy and it is healing.

A more comfortable Libby.

One side-effect that I am getting under control is no sense of being full. I have been eating more than I usually do. This was strange because I was unable to taste anything. In the past, this has caused nausea. I am good with having a little weight to lose.

To my metsters about to go through whole brain radiation, moisturize, moisturize, moisturize. Don’t forget your face. Be sure to keep up on your veggies. If you lose your sense of taste, as I did, balsamic vinegar is helpful on a salad or pretty much any vegetable. It is also good on chicken.

I Like My Brain

My cancer wants to eat my brain. Therefore, cancer is a zombie that I am unable to kill it properly. I can’t even follow all the rules appropriately apart from having a kick-ass partner.

The night of May 8, Gabriel took me to the ER – side note, I have been writing a poem or song about the ER. I felt that was something I need as I spend so much time there. The scintillating scotoma has been going on for a few months. For those of you who are looking this up, my own experiences have normally involved bright objects, sometimes like lightning or lines. Last night involved large rounded shapes.

This is a pretty decent depiction.

Scotoma lights can not be seen through. This makes it very difficult to read, look at all of the things my kids show me everyday, and drive. The lightning lines I can work with. The shapes were impossible. I was glad that I was at home when they really hit. I had been running an errand just before. These always lead to headaches. I was told it led to migraines, but they did not feel like migraines to me.

I have been waking up with headaches for the past few months; different from migraines or sinus types. An ache starting at the base of my neck and heading up over my skull. This has been going on since at least March, but maybe longer. It isn’t a pleasant way to start the day.

I am sure that a lot of people are asking, “Why didn’t your oncologist do anything?” The answer is that he has. Dr. C is really on task and doing his best to keep me earth-side. I had first mentioned the lightening lines probably around October or November of 2019. I also talked to my radiation oncologist about it. Dr. J also suffered from scotoma and told me it was caused by stress. I did have three baby zombies making an appearance at that time.

Betweeen the three of us, we decided to allow my current chemo to do its job. And it did. Those zombies were double-tapped and gone with the next scan.

The scintillating scotoma actually did continue. It didn’t show up very often and I could fade it out by using calming techniques: deep breathing and keeping my eyes closed for a minute or two. With four kids and a rather large house, I think I am allowed some stress. These did settle it down, and quickly.

This method worked really well up until about February, when my headaches started. I probably should have discussed it with my cancer team when they were becoming more frequent and annoying. Maybe even insisting on noggin scans. Admittedly, I did not as I thought it was the anxiety about Covid-19 that was causing the lightning and the headaches. I believe Dr. C was thinking the same thing.

These are weird times.

Back to the ER visit.

Last night, I was not only seeing the bright shapes, I was not able to speak properly. My brain was not allowing me to speak the words that I wanted. What popped out was a jumble of nonsense. I heard it come out and I knew it wasn’t right. It took a lot of work for me to say what I wanted to say.

Adding in a large headache to the above symptoms had my husband on the phone with Dr. C. He had me go straight to the ER.

I had a blood draw and a CT scan. The blood looked okay to the ER doc, apart from low hemoglobin. The scan showed a large number of mets had invaded my head. The doctor recommended full brain radiation and had sent that to Dr. C and my General Practitioner.

He told me that what I had been experiencing was probably less scotoma and more seizures. The tumors were probably causing inflammation and swelling in my brain. This would explain the words and the brighter images that have been affecting me.

I will see my oncologist on Tuesday and I will most likely get an appointment to speak with Dr. J about the radiation. In the meantime, I am taking steroids more often to help with the headaches and a seizure medication to help with the lightning. I will post an update after speaking with them.

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.

Addition:

Erin Leland, March 30

The Legacy Retreat Part V

This was our extra day. We had breakfast. Max enjoyed cutting his grapes and watermelon.

We had taken the option to stay an extra day so we could go to Disney Hollywood Studios and fly the Millennium Falcon. It really was the only reason I wanted to go to that park, but we had a lot of fun. My brother met up with us and it was a laid back, easy day.

I wish I had gotten more videos of the storm troopers. If they saw a kid dressed as Kylo Ren or Darth Vader, they would call them Supreme Leader or Lord and ask them to come with them. I have no idea where they went.

If they came across someone dressed in a brown robe, they would halt them and ask for identification. It was pretty funny.

We flew the Falcon. It was everything I thought it would be. Jesse and I were pilots. Max and Sam were gunners. Two strangers were engineers. Max was not a very good gunner. He didn’t want to push the buttons for the first time in his life.

We had lunch in the Star Wars area. I had some sort of amazing falafel thing. I wish I could remember the name of the restaurant. We just kind of followed our noses.

Star Wars was just kind of everywhere. Even a little bit outside of the park. We went to the Indiana Jones show afterwards. It was so much fun. Even Max was captivated.

Admittedly, we didn’t go on a lot of rides or see many of the other shows. We didn’t stay for very long either. We were pretty exhausted from a very busy weekend. Ted, my brother, was okay with that as he had to drive back to Jacksonville that evening. Leaving early was a good thing.

While waiting for our Lyft driver, I managed to get a pretty nice picture of the sunset.

Jesse just couldn’t stand up any longer.

We left early the next day. It was a fantastic adventure, but we were happy to get home.

The Legacy Retreat Part IV

February 3rd started with that amazing breakfast. Sam, Jesse, and Max were taken to their sessions. Gabriel, Sol, and I were sent to a large room for the final meeting.

You know it might be a hard meeting when you see tissue boxes every 3rd chair.

I am trying to remember this from memory, so it might be out of order. Jill, a volunteer and a coordinator, spoke to us about the legacy of Inheritance of Hope. How the effects continue afterwards. I know that I will forever be thankful to my volunteers. Rob, Anna, and Emily will always be important to me and my family. Gabriel and Solomon plan to be volunteers at future Retreats. I couldn’t be more proud. This is how the legacy continues; families are served then choose to serve other families. I think it is a beautiful way to pay it forward.

Deric Milligan took the stand after Jill. The 14+ kids were sent to their own groups. This was where the tissues really came into play. He spoke of the creation of Inheritance of Hope. He spoke of the families it has affected, including his own. His wife, Kristen, passed away in 2012. Three months before her passing, she had created a video message for all of the people being served by IoH. She was not able to make it to the Retreat that was happening at that time and her video was meant for those folks, with words of encouragement. I believe it is now shown at all Retreats. If you wish to see it, it can be found here.

The final meeting was hard and beautiful.

Our volunteers gave us a gift of a photo book and a very large stack of pictures. It was such an unexpected thing and I couldn’t hold back more tears.

We were supposed to go to SeaWorld, but made the decision to go back to Universal. Our tickets and Goldpass were good for a second day. Why not?

With the rough morning, Gabriel bought the whole family lots of candy at the first candy store we came to. We had jellybeans for weeks. We went on rides we hadn’t made it to the day before, as well as a few rides we had ridden, and just thoroughly enjoyed ourselves.

Mardi Gras was happening at Universal. We managed to see a little bit of the parade as we were leaving. People were dressed in amazing costumes all day.

We were too tired to try to find a place to eat, so we just made PB& J sandwiches for the little guys and PB & banana sandwiches for Gabriel, Sol, and myself. It was a good ending to our day.

The Legacy Retreat Experience Part I

I feel like I don’t know where to start. I have so much to say and I just want to blurt everything out. Most of it I want to blurt out of order. I think this is why I am a better writer than a speaker.

In May 2019, I applied for a Legacy Retreat with Inheritance of Hope. I had heard about this nonprofit from one of my MBC support groups on Facebook. I actually started my application process in April. It took me a very long time to work on one of their requirements: writing letters to my family. I kept putting it off. I couldn’t seem to come up with the words. I will need to do them over. I will speak more on this later.

In July 2019, I got a call from Heidi on our way back from Seattle. She asked me a few questions and gave me a lot of information about what the retreat would entail. I had decided on the 2020 February Orlando one and was happy to find out that was the one for people with metastatic breast cancer.

We would meet in support groups everyday. Patients and caregivers, kids according to their ages. We would not just be dropped off at the theme parks and left to our own devices. Volunteers would be with us to help with kids, carry items, and so on. Main meals would be provided. Flight tickets and hotel fees would be taken care of.

I was a sobbing mess by the time I hung up the phone. It was so much more than I had expected.

February took forever to get here.

We arrived in Orlando on January 30. Our hotel would not be ready for us until January 31, so IOH put us in another hotel for the night. We were super exhausted and hungry. We ordered Applebee’s through Doordash. It was pretty awful. I knew the fries probably wouldn’t be great, but we were missing two orders of fries. Sol’s burger was missing its top bun. I’m not sure how that happens.

The kids were pretty happy to just go to sleep.

In the morning, after breakfast, our volunteers came to get us. There were a lot more of us staying in the hotel than I had guessed. We all boarded a bus. The volunteers put our luggage in the storage area. They were serious about making us let them help.

We took a little bit of time to settle in. Gabriel left with Rob, one of our volunteers, to buy swimming suits for the boys. Rob took the boys swimming and I just had to relax in a giant hammock. The boys had a blast.

The boys, including Gabriel, got to check out the hotel arcade. I think I took Max at that time to get a snack in the hotel Starbucks. We were both a bit peckish.

At around 3:00, we went back to the room to prepare for our family photo session.

I always kind of dread family pictures. My boys are wild and embrace that wildness. To the point that a lot of pictures are blurry. Jesse once had to get dental x-rays 5 times because his x-rays were blurry. It’s kind of an issue. I deal with it by reminding myself that the imperfect pictures are really the perfect pictures for us. I love those pictures more. I also love to laugh about them.

Our photographer was incredibly patient. We did a lot of walking around the pool and garden area. It was lovely. We had fun and managed to get a lot of really nice pictures. I also got a lot of pictures of my boys playing. One is evidence of Sol booping Sam on the nose. Caught ya, Bubba.

At 4:30, we were introduced to our Sessions. Gabe and I were in our own group, Sol was in the 14+, Sam and Jesse were in the same group, and Max was with the preschoolers.

I didn’t know what to expect. I had never been in a group with this many MBC patients. I figured we would discuss ourselves and it would be pretty light. Nope. I was near the end of the introductions and was already emotional from hearing the stories of the other moms and caregivers. I hate crying and I hate crying in front of other people. I just couldn’t hold it in.

The deluge was something I needed. I haven’t allowed myself many moments of crying in anger or fear or sadness. I felt like I needed to be strong, put on a good face, show my kids and the world that I am okay. I let out 3 1/2 years worth of tears in front of strangers. Probably because they intimately understood the frustrations I felt. I wasn’t happy about the tears, but I felt much better for it.

My mom had arrived by the time we were out of our sessions. I was not able to set up a lot of the same things for her that had been set up for me. Our dinner, for instance. She didn’t mind. Dinner was loud and busy.

At 6:30, we went to the fanciest, most casual, formal dinner ever. On my way into the ballroom/dining room, I mentioned to a volunteer that I was feeling really chilly. Less than 10 minutes after I sat down, I was draped in a blanket. These people don’t mess around.

We ate a four course meal, all of it delicious. We were introduced to people involved in creating our retreat. Elsa, Mickey Mouse, Minnie Mouse, and Buzz Lightyear made appearances. We made jewelry with the Kendra Scott people and got a few freebies from the Dillards folks.

The cheesecake was exceptional.

Jesse and Max had a blast dancing to the music. The little kids didn’t eat much of their food. There were so many distractions. I couldn’t complain. I knew how they felt.

Our first day on the Legacy Retreat had been practically nonstop and filled to the brim with activities. We left the ballroom maybe a touch early, but none of the kids complained about leaving. I was pretty thankful Nana Jan was there to help get the kids in bed. It didn’t take a lot, really. They collapsed and slept well.

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.

Two Years Later

I am still here. Two years ago, August 25, 2016, I received the hardest news. I had breast cancer and it has spread to my bones. In a way, I was a little relieved. The pain and weakness I was experiencing was not in my imagination. On the other hand, I was furious. I am still furious.

I ended my two years with a final dose of AC chemo on Friday and I will be making some of my favorite meals before the mouth sores hit. Friday will be French bread pizzas and Saturday will be one of my favorite Indian meals, potatoes and onions on dosas.

This past year has had its ups and downs, as every year should. I was so disappointed in my hormone therapies failing and so very nervous about starting chemo. I requested the most aggressive chemo treatment I could get and I have responded pretty favorably to it. The side effects are hard: mouth sores, fatigue, low white blood cells, hemoglobin dropping. The upside has been lower cancer antigens. My CA 27.29 went from 756 in March to 137 a week ago. I have talked about the antigen count before and, while it is not a super accurate account of how cancer is progressing or regressing, big drops are positive.

I did not have any big trips, like my Paris trip last year, but I did surprise my husband with a Violent Femmes concert at the Oregon Zoo to celebrate our 20th anniversary. I also booked a yurt through AirBnB. Staying in a yurt pretty much completes the Portland, OR experience. In about a month, I will be taking my eldest son to his first concert. He has no idea what we are doing. I am very excited about it.

My oldest friend, Mandy, was able to visit me for a few days with her family. We had a blast. I took them to Maryhill Museum and the Maryhill Stonehenge monument. I loved having all of them here.

Max adores Makayla and Meg. Meg taught him all about Snapchat. That is still his favorite thing.

Sam made a new friend. He and Ryder had so much fun together.

I have also managed to get in contact with people who have become important to me. I was able to spend a couple of days with two of them and those days were wonderful. Thank you so much for coming to see me, Peg & Matt. I believe that your visit helped with my current “pretty good” blood work. The white rabbit worked for Friday. I love you both.

I took them on the B Reactor Tour.

My family and friends have helped to build me a dream deck on the front of my house. It is big enough to seat our family for dinner and will be perfect for my yearly Witches’ Tea Party.

I also made the decision to reopen my jewelry store on Etsy. I have missed creating stuff. I have a few commissions going on and I hope to eventually add in some sewing items. I have been slow about adding new pieces to my shop because I am also renovating my hobby room. It is almost finished. I just need to add shelves on the walls and get my work desk cleared off.

Our family also went camping for the first time in years. We managed to stay in North Idaho just before it got too smoky for camping.

We went to Silverwood Park while we were in Idaho.

I went to Sandpoint, ID for the first time.

I guess I have felt more normal lately than I have in a while. I am itching to go on walks again, but our area is so smoky now that even the healthiest person is at risk being outside for long. I may feel more normal, but I am in no way the healthiest person. I can go to the gym for at least the next day or so before my white blood cells tank on me. My eldest will be pleased. We have both missed working out.

This past year has been good in that I have been more physically capable to handle things. It has been hard with the treatment failures. I am still here and I am working on staying here.

Fuck you, cancer.

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