Fox and Broom

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

Archive for the category “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.

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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.

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.

The Day

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

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

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

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

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

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

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

What Kind Of Cold Is This?

From April 6 up until the morning of April 10, I have felt like shit. It has been hard to eat. Hard to walk. Hard to move. On Saturday, my temperature spiked to 100.4. I am supposed to go to the ER if my temperature goes above 100.2.

So, to the ER we went. I had a lot of blood drawn and tests done. I was given some sort of heavy-duty pain medication that made me loopy and tired. They did not find anything that antibiotics would help, so I was eventually sent home with orders to take Tylenol. I was told that I had some sort of virus working its way through my system.

Holy shit. If this is what it feels like for me to get a cold now, I am tempted to just wear a medical mask everywhere I go. That was some crazy, awful, painful nonsense. But, now I understand why it is soooo important for normal people to keep their viruses away from folks who have a compromised immune system. Colds do not affect me in the same way. They completely knock me out. I don’t just get sniffles and a headache, I now get a full body ache, lose my ability to lift or move anything, and lose my appetite completely.

I am feeling better this morning and my appetite has returned, but that episode brought back flashbacks from my troubles just after I was first diagnosed. I seriously thought I was backsliding. It was scary. I am seeing my doctor today for a checkup and for my monthly bone treatment. I am hoping that this virus does not set back my treatments. It would seriously mess up some future plans if I have to delay getting my injection.

So, PLEASE be cautious of your friends (and newborns – newborns need a few weeks to buildup their immunity) who have compromised immune systems. “Just a cold” or “only a sniffle” becomes so much more for someone with no defenses.

Goals

I have two slightly different sets of goals. “Local goals” and “worldly goals.” The local goals are things that I need to either do to myself or can do in my area. The worldly goals are bigger or more expensive to achieve. In the past three weeks, I hit two local goals and one worldly goal.

I was able to finally walk around my block now that the weather has gotten friendlier. My block is pretty big. It is about the size of three blocks all together. In October, I was barely able to walk to the corner and back. This small feat was a big deal for me. April 2, I walked to the top of Garfield Hill. Garfield Hill is a part of the road that goes from 19th (at the base) to 27th (at the top), so it is a decent few blocks to walk. Especially if you are walking up a 17% grade.

Garfield Hill

The view from the top is really nice. I always forget how pretty it is up here. On a really nice day, you can see mountains in that direction.

The view from the top of Garfield Hill.

I had a lot of trouble trying to get a good picture of just what this hill looks like. It is daunting no matter if you are at the top of it or at the bottom. My kids always do the roller coaster “wheeeeeee” when we drive down it. I didn’t drive up or down it at all while we had snow and ice.

Garfield Hill from the top.

Garfield Hill from the bottom.

My walk ended with me looking goofy while admiring this willow tree’s flowers. They were so lovely.


The Worldly Goal that I hit was seeing the Pacific. I hiked so much that I could probably say that I hiked Badger Mountain, but I want to actually do that before I cross it out. It was a pretty amazing trip and I will be forever thankful to Abigail for setting it up. We saw a ton of sea lions, a mama gray whale and her calf, weird tentacles on the beach, sunset over the ocean, and a few really neat geological formations.

My first view of the Pacific. We were still driving to our cabin.

It was misty like this for almost our entire drive to the Oregon coast.

The Shelley Cabin. Our little home for a few days. It has a path down to the beach.

We had an amazing, sunny day. We took the Hobbit Trail to the beach.

There were a few of the tentacle-like things on the beach. I suspect they are actually some form of sea weed.

Picture from a viewpoint. This is the same viewpoint from which we saw hundreds of sea lions and a gray whale with her baby.

Hundreds of sea lions.

A couple of sunset pictures. That day was so beautiful and perfect.

These are pictures taken from our private beach access.

Sunset.

Sea lions inside of the Sea Lion Caves.

A view from inside of the Sea Lion Caves.

My final picture of the Pacific before we drove away from the cabin.

We stayed in a lovely little cabin between Yachats, OR and Florence, OR. If you ever need to rent a cabin in this area, I highly recommend searching for The Shelley Cabin. The Pacific was everything I thought it would be and more. It is definitely more powerful than the gentler (sort of) Atlantic where I grew up in Florida. It was very chilly out, so I did not even try to dip a toe into the water. I just can’t handle cold the way that I used to. All in all, a wonderful trip.

Oh – on our one sunny day, Abigail made me dress up and we had a photo shoot:

A Last Unicorn theme

Unfortunately, the horn broke.

Six Months

Well, here I am. I am still around. Six months ago, on August 25, 2016, my life completely changed. I had a really rough patch after that and have been working on getting my body back. Cancer takes a lot from a person. Strength, health, daily routines. My family has been amazing in supporting me while I was really down for the count. I honestly can not imagine surviving as long as I have without them. It makes me want to find the people with no support system and show them the same love.

I have now been able to tentatively plan trips. I have two upcoming trips that I am very excited about. I will be going to the Oregon coast with my sister and my other trip is a secret. I am seriously looking forward to posting all about it once we are back. Both of these vacations are something that I have been trying to plan and save for for at least 15 years.

My hair is starting to grow again. I have to laugh at it. It started with about six little hairs poking out of my head. Just six. It took weeks for more hair to start showing up. Now it is coming in with patches of blonde and patches of light brown. I guess I am a calico.

I am still having some issues with food. I really miss enjoying food. I eat because I need to, but there is no pleasure in it. I used to love the taste of a good rare steak, sushi, falafel gyro… Now it is just mundane. I choke on the weirdest things. I can’t eat lasagna anymore. Well, I can’t eat most pastas. I just start to gag. What is really strange with all of this, is that I have started to crave fish. I don’t even like fish. I have been cooking or buying fish 1 – 3 times per week. I don’t know what to make of this. Broccoli is another food that I can’t seem to get enough of. I guess it is good that I am craving healthy things, but I still don’t enjoy eating them.

In all, I am keeping mostly steady. My hemoglobin has been low, but above the danger zone since December. My white blood cells are still dangerously low, which means I try to stay away from large groups of people. With my immune system so compromised, a common cold could do a lot of damage to me. My tumor markers had dropped drastically, but are trying to climb again. I am not sure what that means, but if it keeps going up, there will be more scans done to see if I need to change or add to my current treatment.

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Mom and Max

30 Days of Thankfulness: Day 26

Ok. I got behind on these and I really want to finish them. I only have 5 days left. I had gotten sick and I am still recovering, but I am finally feeling well enough to sit at my computer.

Fox & Broom|30 Days of Thankfulness

Day 26: Charity

I will need to mention two. And yes, they are both cancer related. You will have to forgive me if that is pretty much constantly on my mind.

The first is The Warrior Sisterhood. These women are amazing and have helped to give support and even some normalcy with activities such as going to the pumpkin patch, painting, and family roller skating. I really can’t express to them how much their support has meant.

The second is the Metastatic Breast Cancer Network. These folks are fighting for more research and understanding about Stage IV breast cancer. There is surprising little research about MBC. The number of people living with MBC is even unknown. We just kind of get pushed to the wayside.

So, if you have a sudden need to support a charity, think of one of these. The Metastatic Breast Cancer Network is one of the Amazon Smile charities, so you can donate and shop.

30 Days of Thankfulness: Day 21

Fox & Broom|30 Days of Thankfulness

Day 21: Disappointment/Fear

This is something strange to be thankful for. I guess I would have to say that I am most thankful for my fears about my children. When I was at my lowest in my early cancer treatment, it was the thought of my children that got me to choke down food when I just kept gagging. I thought of them as I lost my hair to radiation. I am afraid of leaving my kids. I am afraid of the idea of Max never having any memories of me. I fight the hardest for my own life because of my children.

A Sober Post About Drugs

So a little break in between my gratitude posts. I have always been someone who never really imbibed in drugs or alcohol very much. I like an occasional glass of something, but it is occasional. On the subject of drugs, I barely took Tylenol. Until I got my cancer diagnosis.

I know this seems like a totally random post. I just started to think about this today. Today was the first day I went totally pain-med free. Since September. I was on some pretty hefty stuff. As in I was actually afraid to drive myself around for about a month. My body became dependent on it, so once I was ready to stop taking it, I had to slowly lower my dosages. Then I looked at all the other meds I am taking:

Fox & Broom|A Sober Post On Drugs

This is not including the D3 I have to take to go along with the calcium, the mouthwash I need to use so I can taste food, or the four other medications that I have stopped taking in the past month. I have to use a list to remember where to put each medication. It also took me forever to remember what each pill was. I will also be stopping a few other medicines within the next month. Which will be nice. Mostly because I hate taking so many pills, but I also miss the occasional beer or glass of wine and there are a few pills in there that will not react well with alcohol. I can wait. I am getting down there.

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