Fox and Broom

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

Archive for the category “Cancer”

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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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.

My Obligatory “Pinktober” Post

I’ve mostly been ignoring the swashes of pink that are everywhere in October. I’m still feeling enough anger that I am kind of hating the constant barrage of reminders that my life has been taken over by my cancer.

I figured I would use my obligatory “Pinktober” post to remind people to check for cancer and check oftenAND be your own advocate if you think something is wrong. I found a lump in my breast around May of 2015. I had just stopped breastfeeding my third boy in March and I thought it was a build-up of leftover milk. I had also just found out around that time that I was pregnant with baby #4. It seemed like a lot of things could have added to the lump. So I ignored it.

I saw my midwife at 12 weeks pregnant and I mentioned it to her. The lump had also grown by this time. She had me come in for a thermography test. This test measures your body’s temperature in certain areas. It is pretty fascinating, though not super thorough. I also decided at that time to set an appointment with an Ob Gyn.

My Ob gave me a referral to have an ultrasound done on my breast. Because I was pregnant, I was not able to have a mammogram or any sort of scan that contained radiation or harmful rays. The results came back as a “fluid filled cyst.” I was told by the Ob to have it rechecked after my pregnancy, but she was sending me to the surgeon to have him look at it. She was pretty sure it would just go away on its own.

The surgeon took a look at my ultrasound and the actual lump. He said he didn’t think a biopsy was necessary. “The lump is a fluid filled cyst and will go away on its own.” His wife got them and they always went away.

My midwife was not so sure it was a fluid filled cyst, but she didn’t push the issue.

My pregnancy continued and the lump stayed put. My pregnancy became increasingly difficult and resulted in a pretty traumatic birth.  I completely forgot to get that “fluid filled cyst” checked out with my recovery. It DID seem to shrink after I started breastfeeding Max. At least it became softer. I put thoughts of it on the back burner. During March and April I was feeling great and even jogging 2 miles once or twice a week. I had hired a trainer and was feeling pretty healthy.

Then May came. And everything started falling apart. I thought it was a pulled muscle in my back. Except it didn’t get better. And it kept hurting for three months. I started losing weight.

 

I actually freaking documented how my cancer started with my own blog.

 

In any case. Get checked. If you think something is not quite right, ASK for a biopsy. At worst, your suspicions will be right. At best, it will be negative. And you can sigh a breath of relief. If you don’t want to do it for yourself, do it for me.

Don't be me. Get a mammogram before you are 40.

Don’t be me. Get a mammogram before you are 40.

Even if you do not have a lump, ask about getting a mammogram before you are 40. Yeah, they suck (well, they squish). However, I have gotten to know more and more women under the age of 40 who are being diagnosed with breast cancer. A lot of them have been blown off by their doctors who can’t believe they have cancer. “You are too young and healthy.” Even after my diagnosis, the doctor who did my breast biopsy* told me that everything looked really good and he was sure that I did not have cancer. I looked at him and told him that I had been diagnosed with metastatic breast cancer that had spread to my bones. He gave me what I have started to think of as the “doctor grief” look. Every doctor who has worked with me has given me that look at some point. It turns out that my case had been presented to a local cancer meeting and he had read about me that morning. He just didn’t realize that case and me were connected.

*I had a breast biopsy done after my diagnosis to determine if I had the HER2 cancer marker. I do not have the HER2 marker.

So, now I am on a shitload of medications all in an attempt to keep my cancer in check and my pain at a minimum. I even have some medications that help me to want to eat (I include marijuana edibles in this category). My goals in life have become more important than ever to me. I have them separated into two groups. “Local goals” that I can easily work toward and “Longer Goals” that I either have to save up for or work on keeping my cancer under control to see those goals happen. I have already met one of my local goals and can change it slightly: I gained weight to a goal weight. Now my goal is to maintain that weight.

A little about my picture: I had radiation therapy on my skull. The dose finally affected portions of my hair and it started to come out in clumps. Rather than dealing with hair shedding all over the house, I shaved it off. This picture was taken on October 7, the day after I shaved it all off. Due to the amount of radiation dose I received, my head still looks like this. 20 days later. My husband (who is a physicist) has told me that it could take a few months for my hair to start growing again. In the meantime, I do get to wear some fun hats and fun earrings.

Cat hat!

Cat hat!

For the moment, I am still doing good with my current treatment plan. I am working on getting off of a few of my meds, which would be very nice. Some of the side effects are doozies. My blood also seems to be holding its own for a bit longer. I did have a transfusion yesterday, but it had been a few weeks since my last one. It is an improvement over getting blood every other week. I had my bone-strengthening treatment on Monday and did not have the extreme reaction that I had the first time. I was a little achy, but was able to walk on my own.

I am going to the gym once a week to work on my legs and core with the cycles and my arms with the arm pedals. I am starting slow with the exercise. If my appointments allow for it, I hope to start going to the gym twice a week. It is nice to feel like I can live an almost normal life.

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