Fox and Broom

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

Archive for the tag “Metastatic Breast Cancer”

Efffing Pinktober

I did not write a Pinktober post last year. I decided to put it on the back burner as October 2019 was a bit crazy for me.

I was dealing with the after effects of a really bad reaction to a chemo I had started. Gabapentin did a good job of trying to kill me. It was supposed to be a more gentle treatment. I went to the ER twice a few days after two different chemo treatments. The second time was what put the puzzle together.

On September 25, three days after chemo, I went in with a 103 F temperature and blood pressure that was so low, I had trouble walking and standing. Septic shock was the consensus, but no source of infection. I was kept in ICU for a few days until my mysterious condition stabilized.

On October 10, 4 days after chemo, I went back to the ER with the same issues. My oncologist put a quick stop to the chemo and started me on Navelbine.

I still had a pretty successful Witches Tea Party.
Fuck cancer.

With that out of the way, you get to have some anger and sorrow-filled preaching.

Kim Wolski was one of those amazing people that I should have met in person. I can guarantee that we had passed each other a few times. She moved from Minnesota to Florida at about the same time I moved from Florida to Minnesota. She had stopped in Jax on her way to Tampa and even went to Einstein-a-Go-Go. I loved that little club.

Cancer murdered her December 10, 2019. She was beautiful inside and out. She was smart and a motivated MBC advocate. She was a wonderful mom. I hate saying “was.”

I did not know until March 2020 that Kim had died. I have been staying largely away from social media. This is the news that I miss out on. It is frustrating, maddening, and devastating.

To pay tribute to her, I wish to post something she had posted, and given me permission to write into my blog.

Kim Wolski 10/26/2018 “Actually…. here it is: Seer database:
A database is designed to be a host for storing data. How you filter and disseminated, would determine how you effectively utilize the database. Not having full data content can lead and would lead to misleading information.
Targeting certain markets doesn’t muddy the waters, it actually steers conclusions to wanted probable outcomes.
Especially with African American women who seems to have a greater risk of reoccurrence. The database can be a useful tool to filter down.
Look at my case, as a white woman with no history of breast cancer in her family, active, within BMI, nursed both of her babies for a year each, never smoked or drank; the likelihood of me developing breast cancer at all was less than 5%. And I metastasized right away with an aggressive form of BC.
If breast cancer is the second cause of death for women under 50, you would think that capturing and being able to filter my race, geographical, environmental would be useful in help finding a cure or at least making this truly a ‘chronic’ disease like AIDS.
Without the study of origin of the AIDS virus, would we have so quickly deduced a control one could argue.
As we get older, our cellular division mutating does scientifically makes sense, but with younger and younger MBC patients we are losing, it’s reached beyond an AIDS epidemic.”

But there is so much more. I should have copied some of the answers to her post. The terrible fact is that Metastatic Breast Cancer numbers are incorrect. I have preached on it before and metsters will continue preaching on it after I have left this plain of existence. The numbers are not low in a good way. They are low in a deceiving way.

People diagnosed at an early stage of breast cancer: stage I – III are not included in the metastatic, stage IV numbers. I see that this can cause a lot of issues. I have no idea why early stagers are not counted. This shit kills them too. It isn’t as if they are somehow magical and stage IV is nothing to them.

Approximately 30% of early stage breast cancer survivors become stage IV. Approximately is all I can tell you as the numbers are messed up. I see so many folks who have absolutely no idea what is going on come into my support groups. The questions and the statements are heartbreaking.

“I had no idea this could happen to me.”

“When do you ladies end treatment?”

“I don’t know how I got here.”

“I was cancer-free for 15 years.”

“What is Metastatic Breast Cancer?“

Then, there are the people like Kim and me. Diagnosed de novo. We are the 5%. With only 5% of us counted for studies, it makes sense that I was told this disease is so damned rare.

With stats like this, we often feel ignored. With more research focused on early stage breast cancer, we feel ignored. It isn’t that those studies are not important. They are. We just want to be acknowledged and have *MORE* studies done.

This is why I push Metavivor on my friends for donations every year. Metavivor is an important resource for us Metsters. They fund the research that is needed for Stage IV. They will not be able to save me, but I am hoping they will save future generations.

Fuck Cancer

Don’t Ignore Stage IV

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 III

February 2nd was a full day. Lots of laughter, love, sadness, grief, and healing. This day is what makes Inheritance of Hope what it is.

We woke up early to indulge in the tasty buffet. My mom went to church while we went to our sessions. She waited on us to be done before she drove home. Rob had managed to put together a picture of her and I in a frame to give to her. She’d had a fun time with us, but had some work waiting for her and she had no interest in going to Universal Studios.

I won’t discuss the sessions, but I will tell you that I brought up Camp Kesem. If you are unfamiliar with this organization, please look it up. Especially if you, a family member, or a friend has kid(s) and has been affected by cancer. My older kids will be going for their fourth year this summer. My kids always come back happier and more confident.

The kids threw eggs in their sessions.

I am pretty sure Max just threw eggs to throw eggs.
Jesse definitely just wanted to throw eggs.
Sol got some satisfaction in throwing the eggs.

They were to write something on the egg that scared them and throw it as hard as they could. If it weren’t so messy, this would be a great stress reliever in general. We might do this or something similar every once in a while at home.

To make it quick, we got on the bus, got our lunches, and landed at Universal Studios. It was super sunny and perfect for a fun time outside. What I have not mentioned previously is that Gabriel and I were going to be leaving the park at around 4. The boys were staying with our volunteers to play until they dropped. Or until 10.

Obligatory dorky family photo. Laugh all you want, it was fun.

IOH gave us a Gold Pass. I had no idea such a creature existed. This wasn’t even in the realm of a Fastpass. It was something different. We would stroll up to the person checking Fastpasses, show them the Gold Pass, and they would call an escort for us. Ho-ly cow. We were usually led to a door and taken to the ride through back hallways, allowing us to go ahead of the Fastpass and regular passes.

We went on Minions and Transformers. Max LOVED Transformers. We spent some time in Diagon Alley, then a lot more time in Hogsmeade. Jesse got his wand. We rode Escape From Gringott’s and went on Hagrid’s motorcycle ride twice. That ride is awwwwwwwesome. Poor Sam hit his head pretty hard while riding on it and was no longer so enthused about it.

I am laughing because Megatron moved and Gabriel jumped. I told him I would protect him from Megatron.
The sidecar was fun, but I prefer being on the motorbike.

Gabe, Max, and I went back to the hotel. Max was so worn out that he fell asleep on the bus. When we took him to the toddler area, they put a pillow down for him. He woke up enough to see the pillow and ran to it. For a little monster, he can be so cute. I suspect it is his survival mechanism.

Gabriel and I were scheduled for 4 things. The first item on our list was a visit with a counselor. This sounds like a weird start to a date night, but it helped clear the air. I am not so good at expressing myself. I hold my thoughts to myself as if they are precious stones. It’s kind of a Scorpio thing, I guess. I let Gabe take some of those stones and I left feeling lighter and he seemed happier that I had let him take some of the load.

We separated to get pampered. He got a massage and a new shirt. I had my makeup done, picked out some Kendra Scott pretties, and new clothes from Dillard’s. My makeup had taken up more time than it should have, so we were rushed to our next appointment.

The Legacy Video.

This is probably the most important thing that came from the retreat. I wasn’t sure I would be able to do this. I was afraid that it would just be 10 minutes of me weeping. This is the hardest thing in the world. I made a video, with Gabriel, for my family. It is a visual and auditory reminder of me: my face, my voice, my personality. It is something for my family to hold on to after I have left this plane of existence.

I got the courage to do it from our volunteers, many of whom had been served on previous retreats. I got the courage from videos of the children of parents who had passed. I got the courage from people who spoke about how much it meant to them to have something like this as a reminder of a loved one.

So I just started talking. I pulled up memories. Gabriel has been a part of my life for so long that he was able to talk about the same memories with me. The talking became easier and the anxiety just disappeared. I told my boys silly stories about things I had done. I told them about silly things they had done. I told them how proud I am of all of them. How so very talented each one is in his own way.

My heart felt so good after we had finished. I knew that I would have to rewrite the letters that I had originally written in my IoH application. I will have to write more than one letter to each person. It was an inspiring experience.

We were then sent to Bonefish Grill for our date. We shared our table with two other couples. We had good conversations and good food.

We met up with our kids when we got back to the hotel. I was worried that Max would be too refreshed to sleep, but he was ready for a full night’s sleep. The boys had had a lot of fun playing around at Universal. They had spent most of their time casting spells in Hogsmeade and Diagon Alley. They were totally satisfied with the day. Our poor volunteers look exhausted.

Someone once told me to learn something new everyday. I learned many new things on this day. It was a good 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.

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.

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.

When Treatments Fail

In the year and half since my metastatic breast cancer diagnosis, I have been on three treatments. As my cancer has invaded my skeleton, it is really hard to track it properly. We use nuclear bone scans, CT scans, and tumor markers aka cancer antigens or, for me, CA 27.29. Tumor markers are an imprecise way to keep track of spreading cancer. However, if they continue to go up, there is usually something going on, even if the scans are showing stability.

Tamoxifen and radiation were my first line of attack. My scans remained stable and my markers went down. For seven months. Then my markers suddenly shot up and continued going up. In April 2017, I started my second line of treatment, Ibrance w/ Letrozole. Once again, my scans were mostly stable and my markers dropped, but just a small amount. By February 2018, it was clear that this treatment wasn’t working well for me. We replaced the Letrozole with Faslodex injections. This combination did not work at all for me.

I am going to take an intermission here to explain nuclear bone scans. These scans are really fascinating. At least to me. About 6 hours before the actual scan, I am injected with a dose of radioactive tracer. I believe it is technetium 99 (Tc99). The techs always tell me that I am safe around people, but I do give off radiation. My husband has measured it in the past. After this injection, I need to drink a lot of water and pee as much as I can. This helps to get rid of the radiation that did not stick to my bones.
During the scan, I can see my skeleton appear on a screen as the scanner passes over me. Or I could if I was able to wear my glasses. People who come with me to the scan can watch my skeleton. The scanner itself reminds me of an iron and the surface I lay on looks a lot like and ironing board. The scan gets really up close to my face to start with. I usually close my eyes, which usually leads to me falling asleep for most of the scan. It takes about 45 minutes to an hour. I get in a nice power nap.

Back to treatment failures.

My last bone scan was on March 23. It showed progression of cancer in my left leg and slight progression on my skull. My CT scan on March 26 showed cancer lesions are now on my liver. I had really high hopes for Ibrance. It, and other 4/6 inhibitors, have been almost like a miracle treatment for many people living with MBC. My disappointment is indescribable. I had expected to be on Ibrance for at least 3 years. I got in 12 cycles/12 months.

I am now preparing to start IV chemotherapy for the first time. The chemo combination I have agreed to go with is Adriamycin with Carboplatin. My sessions will be one day every three weeks for four sessions. I hope that makes sense. It looks like each session will take at least two and a half hours.
I will be losing my hair again, but I don’t mind. Actually, I will also lose my eyelashes and eyebrows. I did lose half of my lashes and brows on the left side from radiation on my outer left eye orbital. That was hard. I am not a vain person, but I hated seeing my lashes look so ragged. It was also painful getting lashes in my eye. I might start working on drawing eyebrows. I have failed miserably in the past when I have tried to do this.
I will also be getting Granix injections for about 5 days in a row after my sessions. My white blood cells will completely tank on me. Granix will help them to come back faster. These are shots in the belly, which I do kind of mind.

Before starting chemo, I will be getting an echocardiogram to make sure my heart can handle this. I will also be getting a brain MRI due to dizzy spells. I am not normally an anxious person, but this on top of the changes has got me on edge. I guess my anxiety coping mechanism is cleaning. My upstairs living room is almost spotless. As spotless as four kids and two dogs will allow it to be. My basement living room is almost as clean. My kitchen is still a mess, but my dishes are as caught up as they can be. Those who know me know how miraculous this is. I will be mopping my kitchen tomorrow and setting up an Easter themed table cloth on the table.

Emotionally, I am feeling furious right now. It’s kind of like having a furnace in the pit of my stomach. And I don’t want it to get low or go away. I was angry like this after my diagnosis and I thought it was the right thing to try to ease that anger. I have a right to my fury. There is nothing about this that is ok. Cancer fucking sucks. It sucks for me, for my family, and for my friends.

If you wish to help me as I get used to my new path, I am currently accepting all forms of good vibes, positive energy, prayer, and good thoughts. I will also accept silly things that make me laugh and distract me.

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