Cass and Cancer

It’s been a while since I’ve written on here. Under the circumstances, that’s a good thing. Living with stage IV cancer means no news is good news. Here are few updates since my last post:

I was recently switched from Herceptin to Ogivri, a “biosimilar” version of this monoclonal antibody. Herceptin is pretty dang expensive, and while insurance was covering it, they tend to prefer that people switch to the generic version after some time. Since Herceptin was originally developed, there has been a push to create the generic form of this due to the nature of what it takes to create monoclonal antibodies (it takes a lot of effort!). Of course, this switch made me anxious. Any change in treatment makes me wonder “Will it work as well? What will the new side effects be? Will I tolerate them ok?” Also, any change in meds opens up the option for my body to have an allergic reaction. So far, I haven’t noticed any side effects other than feeling a little more “under the weather” which I plan to discuss with my oncologist the next time I see her. And so far no allergic reactions! Phew! I’ll also be doing this switch with my bone-related treatment. Currently I receive a shot called Xgeva, but will be switched to a Zometa infusion.

Also, this winter I reached ONE YEAR STABLE!!! In the land of stage IV breast cancer, this is a HUGE deal. Each year I am stable and alive, my odds of continuing to do well with this disease improve. I am so grateful to reach this milestone. I’m grateful that I’m able to continue working. I’m grateful that treatment has what I consider to be a low-ish impact on my daily life. I’m grateful that after surgery on my femur and developing lymphedema, I’ve had very few issues with walking and managing swelling. We also moved CT scans to every 4 months instead of every 3 months, which will do a lot for my scanxiety (what we in cancer land call anxiety related to doing scans to check for cancer). Did I mention I’m grateful? I still experience a significant amount of pain related to bone lesions, and at times significant fatigue, but those are minor complaints compaired to disease progression and chemotherapy.

I’m also grateful that this winter I have yet to catch the flu. I did have a steady set of 3 colds from Thanksgiving into the new year, but was able to recover from each. And though supposedly my immune system is not as taxed as it would be if I were doing harsh chemotherapy, I still worry about the impact catching something viral. We had our first case of coronavirus diagnosed in Kansas this month. I’m not usually one to sanitize myself or objects with a freakishly high frequency, but I’ll admit I’m a little on edge about this virus and the flu. The grocery store is out of hand sanitizer; luckily I was able to find a DIY recipe that I plan to make this afternoon. I know I’m a little late with this but PLEASE PLEASE PLEASE get your immunizations each year. Anything we can do to reduce the spread of communicable diseases is important for the lives of those with compromised immune systems. If you are physically able to receive vaccines, DO IT!

In other news, I was recently given the opportunity to begin training to become an EMDR (Eye Movement Desensitization and Reprocessing) certified therapist. This is a HUGE deal as EMDR is a very successful modality for treating mental health disorders including PTSD. I’ve been wanting to improve my skill with treating PTSD for some time, and a large percentage of my clients have experienced significant trauma during their lives. I was lucky enough to travel to Lincoln, NE with colleagues from work this past weekend for the first part of the training and while it was exhausting, it was also AWESOME. Part of completing the training is practicing in the role of both therapist and client in the training setting. I’ve received traditional psychotherapy in the past, so I was very interested to see what I would notice in the role of client doing EMDR. Now that I’ve experienced EMDR myself as a “client,” I feel even more confident that it is an important tool for me to use with my clients. Next comes 10 hours of consultation and beginning the work with clients. We will also return to Lincoln in April to complete the rest of the training. I feel very luck to be physically and mentally able to travel and learn new things.

In other learning-related news, Dan was ACCEPTED TO GRAD SCHOOL!!!! I am so freaking proud of him. He’ll begin the social work masters program this fall and I can’t wait to spend evenings talking about his classes and all the interesting things that come with being a social work grad student. I could go on, but I don’t want to be THAT embarrassing wife.

That’s it for now, and thanks for reading!

 

xoxo,

Cass

 

Today marks one year since I was told I had cancer again. One year ago today I was sitting in my pulmonologist’s office, trying to figure out why I couldn’t breathe after walking up a flight of stairs, and why I had a cough that wouldn’t stop, why I was nauseous, nothing sounded good to eat, and why my ribs were hurting. The breast cancer I was first diagnosed with several years ago had grown and spread to my lungs, liver, and bones. It was scary to hear that and I immediately began treatment. It hasn’t been an easy process but I’ve made it one year and wanted to share what’s been helpful.

One of the most helpful things I do for myself is trusting my doctor to make the best choices for me, and the results so far have been very positive. (That doesn’t mean I haven’t also challenged my oncologist and asked a lot of questions!) Thankfully, with the type of cancer I have there’s not much guess work – based on the pathology there are very specific treatments that are usually effective, and thankfully they’ve been working for me. During the past year, I completed 6 months of harsh chemo, which shrank the tumors in my organs, and began taking a shot every 6 weeks to help reduce the tumors in my bones. I had a rod placed in my right femur, where a 5 cm tumor took up residence, and then we radiated the bone 10 times (? I can’t even remember now) to reduce the pain the tumor was causing.

I’ve also completed 1 year of targeted therapy, which is different than chemo and will continue for the rest of my life or until the cancer progresses. I often get questions like “How long will you be doing treatment? Is it almost over? It’s over, because you have hair again, right? You’re not doing treatment anymore, right? You’re done with that?” I will continue treatment for the rest of my life. My treatment team is watching my heart, because sometimes targeted treatments can affect how it functions, but so far so good, and I can continue on the treatment as long as it’s not having serious side effects and continues to keep the tumors from growing or spreading.

I also receive a CT scan every 3 months to check on how things are going, and for the last 6 months the scans show us that for now, the cancer is taking a vacation from my organs and likely my bones. Every 3 months brings a new wave of anxiety, and until I get the results, I’m on edge. During my last CT the radiology tech encouraged me to call in for my results rather than waiting 5 days (it was a holiday weekend). Thankfully the results were good and we were able to enjoy the long weekend.

What’s also helped is spending time with my cancer support group. Unfortunately, we lost our friend Barb this year. It’s been hard for me to process her death and while I can’t speak for everyone I know that the group is one of the reasons I’m dealing with her passing and my disease as well as I am. We have each other’s backs through the good, bad, the unthinkable. I’m so glad to know them and have yet to meet women as humorous and strong as them.

The Wonder Women of LFK:

Because of my treatments being effective, I feel better than I have in a long time! I can breathe, I have a great appetite (sometimes too good!) and the bone pain is almost completely gone. Dan and I were able to finally go on our honeymoon to Vancouver, BC, and we were able to get out and enjoy the sites, sometimes walking almost 30,000 steps per day!! We had a great time and hope to visit again some day. I highly recommend visiting if you enjoy good food, fantastic weather, and genuine Canadian hospitality. We’ve also been trying to enjoy this summer as much as we can as Dan has been taking a break from school this summer, and have been lucky to be able to see some friends, family, and get outdoors a bit. Next on the list is grabbing some food from Jones BBQ in KC!

Thank you to everyone – Dan and I appreciate all of the support and kind words from you all. It means a lot to us.

-Cass

It’s been a while since I’ve written on here, and I figure it’s time for an update. When I wrote last, I was still recovering from surgery on my femur. A lot has happened since then! Sometime in November I graduated from walking with a cane (I only needed that for about a week!) and have been walking independently since. I am able to get up and down stairs (with a little pain, I’ll admit), and able to go on longer walks around the neighborhood. I’m starting physical therapy next week to improve the functioning and strength of my leg.

During November I also completed 10 days of radiation to the femur to kill any tumor cells living there. What is radiation you ask?? From cancer.org: “Radiation therapy uses high-energy particles or waves, such as x-rays, gamma rays, electron beams, or protons, to destroy or damage cancer cells.” Below is a picture of the machine they use to radiate different parts of the body:

Radiation came with some side effects, including “sunburns” on different areas that they radiated. That was too be expected, though, and I managed ok with daily application of various creams and lotions. Radiation was done to reduce the pain associated with the cancer cells in my femur, and to kill the cells so that they will be replaced by new bone. So far, the pain has been significantly reduced, which is the most telling sign that the treatment was helpful.

I’ve also completed three more rounds of chemo since my last post. It’s continuing without much to report. I still get nausea, digestion issues, fatigue, bone pain, the typical side effects. My oncologist plans for me to complete another CT scan in a few months and we’ll get another peek at how the chemo is affecting the cancer. So far I’m thankful that there haven’t been any major complications or side effects I can’t deal with.

~~~~~

Since my last post I have had a few experiences that made me contemplate just how much I should share with the people in my life about what is going on with me. I’ve found through conversation that many people do not know what it’s like to have stage IV cancer. Sometimes, I find myself becoming frustrated, and often wish that others would understand exactly what I’m going through. Of course, that’s not even remotely reasonable, but I think this is an opportunity for me to help others understand what it’s like to live with stage IV breast cancer. I don’t want to send the message that people should avoid talking to me because I might get upset about what is said. Instead, I’d like to provide some insight on what life is like for me and a list of suggestions on ways to be supportive. I don’t know about you but I struggle with what to say when others are experiencing difficult situations. This isn’t easy to deal with or talk about, knowing someone with a terminal disease.

Some information that I think is worth sharing:

1: My cancer is incurable and life-threatening. Also known as “terminal,” but I’m not dying, yet. Treatment for me is life-long, unless researchers find a cure before I die (and no, I don’t believe they are hiding a cure!). There is no “getting to the other side” of my treatment, until I get to a point where I’ve tried all the treatments available and I stop treatment to begin end of life care.

2: I’m self-conscious about how chemo makes me look. I miss my hair, and it’s not coming back any time soon. I deal with a rash of acne from treatment every three weeks, and I’ve had to learn how to draw on my eye brows, and I’m still not sure if they look ok.

3: While I believe that spirituality and religion are a vital part of the human existence, I do not believe in God or Jesus, or that God will cure me or work miracles. Dealing with cancer has solidified for me that I am a realist who is mildly spiritual and very thankful for modern medicine.

4: Statistics are not applicable to everyone and though the average timeline for living with this disease is 5 years I have a lot of hope that I will continue to live for a long, long time. I’m also realistic – this is a disease that can be insidious and unpredictable. Keeping that in mind, I’ve spent some time thinking about my death and this whole process – how to  handle my death, my medical care, and my finances.

5: No news is good news! I tend to keep to myself as life goes on. Sometimes I don’t update because I’m trying to keep myself occupied and distracted. I continue to work full time, do treatment, attend all my medical appointments, spend time with Dan, and try to stay connected with friends as much as I can. Trying to keep things as “normal” as possible helps me, otherwise I become very overwhelmed with the seriousness of what I’m dealing with.

Some things you can say to a cancer patient if you would like to be supportive but don’t know what to say:

-I’m sorry you’re sick.

-How can I help?

-I don’t know what to say.

-I’m here for you.

Also, this list is my list, and may not be applicable to other people experiencing cancer. Ask others how you can be of support as we’re all different. I am always thankful for the love, support, and kindness shown to me since I started treatment again.

Much love,

Cass

It’s been a while since I’ve written on here, time for another update! A lot has happened since my last post. The biggest news is that I had my first CT scan since starting treatment. The results showed significant reduction in the tumors in my lungs and liver, and shows that the tumors on my bones are dying and being replaced by new bone. We expected to see good results because I’ve been breathing better, shortness of breath has gone away, and my appetite has improved. We are so happy that the treatment is working, to say the least. A lot of times people don’t respond well and have to move on to a second line of treatment fairly quickly. We’re hopeful that this will continue working for the time being. I have four months of chemo left and then will continue Herceptin and Perjeta as maintenance therapies until they stop working. I’m glad the chemo is working but also super excited for it to be over so I can get my hair back!! I really miss my hair!

Also, about a month ago I started to notice having more pain in my right leg. When I was diagnosed with stage IV cancer I completed a bone scan – a nuclear medicine test that shows where tumors are located in the bones. They injected me with radioactive tracer that then lights up on the screen. The scan showed I have tumors in my vertebrae, skull, pelvis, sternum, and my right femur. When I told my oncologist about the pain in my leg she ordered an x-ray, which showed a 5 cm tumor in my femur that is most likely causing the pain. It is located in a specific area of the femur that bears a lot of weight while walking. A bone surgeon looked at the x-ray and decided that if I kept walking on my leg the femur would likely break, so it was decided that they would place a titanium rod in my femur to prevent that. I was ordered to keep of my feet for a week  until they could get me in for surgery. That was rough! I had to learn how to use crutches and for a few days was using a wheel chair. I was unable to do basic things like carry my own food to the living room for dinner or get my self a glass of water. Basically, it really sucked. Dan was very helpful with getting me basic things around the house, and driving me to and from work each day. My gratitude for him has grown even more lately. I feel very lucky to have a supportive and caring partner.

Thankfully, the surgery came and went without complications. I was able to put weight back on my right leg the night of the surgery, which felt like a huge accomplishment! I spent the night in the hospital so they could monitor me. I met with physical therapy the next day to learn about how to safely use my walker at home and how to get up and down stairs if needed. The pain wasn’t too bad and I was sent home that day. For the next two weeks I used a walker to get around. It was better and less stressful than using crutches but I was still unable to carry anything with my hands and relied on a tote bag slung over my shoulder to transport things, and we learned how to adapt. Since I couldn’t carry water I started carrying bottles of water. I have a friend working at Visiting Nurses who gave me a bag to hook onto my walker, too, which was very helpful!! During this time I also had to give myself daily shots to prevent blood clots, had to shower with my leg covered in press-and-seal wrap (I am so good at it now, perhaps it is my true calling?!), and had to change my bandages every few days.

Last week I met with the bone surgeon to discuss the progress with healing and getting around. I was graduated to a cane (!!!), and was allowed to start showering with my incisions exposed. Let me tell you… showering without being wrapped in waterproofing gear is such a luxury!! I even bought new soap to celebrate. Using a cane has felt so much better… I can get around while carrying things and don’t have to use my tote any more. I even spent time cooking this Sunday, something I haven’t done in a long time! We decided to cancel our meal train so that I can get back to cooking for myself. It’s been so appreciated though when people brought us food… very helpful as most nights I was too tired to do much of anything.

In other news, I started getting shots to boost my immune system. During my second treatment I went to the hospital because I wasn’t feeling well… and they discovered my white blood cells are too low during chemo and I was at high risk for life-threatening infections. The shot is called Neulasta and “jump starts” my bone marrow to produce more white blood cells. I’m so glad I went to the hospital when I did because now I receive the shot after every chemo and feel SOOOOOOOOO much better afterward. Before the shot, with every treatment I felt like I had the flu for about a week. I still feel tired a lot but I don’t get that sick feeling like before. I’m so thankful for medications like these that help improve my quality of life.

For now I’m focusing on transitioning to walking without the cane, getting back to driving, and cooking again as much as I can. That’s all I have for now! Until next time…

Love,

Cass

Today I went in for my third round of chemo. I’ll admit I wasn’t super excited this week as the day came closer – after the last round I felt pretty bad for about 2 weeks. One night I developed a slight fever (a big deal when your immune system is compromised). Thankfully, when Dan and I went to the ER they couldn’t find an infection and I wasn’t hospitalized. That was good news because we had a trip to Colorado planned and we were leaving two days later.

We were able to go on the trip and it was really fun. We saw friends and family, went to some of our favorite food spots and some new ones, checked out Red Rocks, Morison, Boulder, and the Museum of Nature & Science! I also experienced for the first time flying with a face mask. I was definitely the most fashionable passenger on the plane.

I was able to go to our monthly support group meeting this month (aka the meeting of the Lawrence Wonder Women). They are so supportive and kind and really helped me feel better about what Dan and I have been dealing with. It’s also been so helpful when people bring food for us. I never know what the next day will bring and it’s been nice not to worry so much about that.

Anyway, I wasn’t particularly looking forward to chemo today. I did end up asking for more meds to help with side effects and I’m hoping that will improve how I feel this time around. It was a bit eventful as I misread my calendar and was late getting to treatment, my power port had trouble, and the first bag of chemo sprung a leak (don’t worry not the super corrosive kind). In other news all three liver tests were within normal range! This a relief because at least one has always been high since I was re-diagnosed. I also got my flu shot and a pneumonia vaccine – I suggest getting one if you can!

Love,

Cass

Well, I’m bald again. Let me tell you, it’s bringing back fond memories. I held onto some of my favorite hats from last time and they are really making a comeback (mostly the leopard print one). Last weekend, I made the decision to shave my head when my hair started falling out in huge clumps. It’s weird getting used to my reflection in the mirror… On the bright side this is really going to make my Larry David costume this Halloween.

Chemo #2 came and went last Thursday. I’ve been feeling a lot better than I did after the first round, and was able to work the following day. My cough is still under control and I have even reduced (!!!) some of my cough meds this weekend without any trouble! I have been feeling really dehydrated, which I guess is normal when you’re pumped full of toxins. Also, turns out there continues to be a shortage of IV bags due to damage caused by hurricane Maria and I don’t get IV fluids with my chemo like I did the first time I was diagnosed, which may be contributing to the dehydration. The more subtle side-effects are slinking in… I’ve been having trouble focusing, finding it hard to recall certain words, feeling light headed, and experiencing a general malaise. I’ve been chugging water, coconut water, kombucha, anything to keep my hydration up! I also stopped drinking alcohol when I was diagnosed. My oncologist says it’s fine to have a glass of something once in a while but I already feel hungover without the fun.

The biggest news is that 2/3 of my liver tests improved within 1 treatment cycle!! This is great as all 3 have been somewhat off the charts and may be indicative of active disease. ALT (alanine transaminase) was 74 when I started chemo and should have been in the 10-60 range; AST (aspartate aminotransferase) was 46, and should have been in the 10-42 range. Both are down! My alkaline phosphate levels are still high – I was at 163 during my first round of chemo and the level crept up to 204 this past week (average range is 42-121). Apparently this last one is usually elevated during chemo for most people and/or in the presence of bone mets, so it’s not too surprising and may not be completely for measuring active disease. Still, something positive to focus on feels good.

Dan and I also booked a trip to Colorado for next week and are really looking forward to getting out of town for a bit. We’re hoping to lounge and eat some good food, maybe hike a few mountains, definitely will be hitting up the extreme whitewater rafting ;). I’ll have scans (probably bone and abdominal CT) when we get back. My oncologist suggested doing them before our trip just to make sure I’m in good shape but I decided to wait until we get back. The cool thing about cancer treatment is that you get to make it what you want. If I want to wait an extra week for scans, I will. If I want Red Vines instead of chemo, they have to say yes. I’m the expert! The truth is there is a lot that’s out of my control. For now, I’m changing the things I can and accepting what I can’t.

 

Until next time,

Cass

 

Ok, time for my second update. In my last post I wrote about seeking a second opinion from St. Luke’s in Kansas City. This last week, Dan and I were prepared to make the trek to KC to meet with Dr. Pluard and then trek back to Lawrence for my surgery to have my port placed. Fortunately, in the meantime my oncologist was able to touch base with Dr. Pluard and they were able to confer on my treatment plan. Dr. Soule recommended starting with immuno and chemotherapy, specifically Herceptin, Perjeta, and Taxotere. Dr. Pluard agrees this is the best course for first-line treatment. I spent a little bit of time researching the combo myself, and was reminded of the Cleopatra study (one I had followed as results were presented a few years ago). The study shows that this specific combo is the best option for the type of cancer I have. So, with that info, I made the choice to begin treatment this past week. We were able to skip the appointment in KC which made the day a little less stressful.

I was able to get my port placed that day and started the cocktail on Thursday. A few visitors stopped by, and then Dan in the afternoon with food and beverages. It was nice to have company! The first round went on without much to write home about. Later in the evening though, I started to have more trouble with my cough. I ultimately took the following day off and called both the oncologist and pulmonologist’s offices to see what could be done. Finally, I’ve been prescribed a combo of meds to manage my cough that seems to be working! I can actually have a conversation without sounding like I’m on the verge of tears (a weird thing that happens to my voice when I can’t breathe).

For now, I’ll be doing this treatment every three weeks. Next week the oncologist and I have a meeting to discuss hormonal treatment options to control the disease more (the recurrence tested positive for hormone receptors). The side effects are rolling in especially with my taste buds, and breakfast this morning tasted like a fresh nickel found on the side of the road. My digestion is questionable. But, for now we have a plan and that’s a good feeling.

 

-Cass

If you’re reading this, you probably already know that after 5 years of “remission,” my breast cancer has returned for another go-around. For the past 3 or so months I’ve had a nagging cough that just wouldn’t quit. With wedding planning and everything else life tends to offer, I kept putting off getting it checked out. Also, as a cancer survivor I was afraid (stubborn) that having tests done would confirm one of my worst fears: the cancer is back. Eventually, the cough became too much to ignore. A chest x-ray lead to a chest CT, which showed cancer in my liver, lungs, and bones. A bone scan confirmed location of additional lesions. Brain scan showed nothing’s going on with my noodle, what a relief. For the past week or so… I can’t get that famous Backstreet Boys song out of my head. You know, the one where they claim they’re back! Alright?! They are BACK! Only in my head it’s playing to the tune of “cancer’s back, alright!” Ugh.

A lot has happened in the past five years, since I wrapped up my treatment for stage II breast cancer. Dan and I spent the last year planning a small wedding, and two months ago we were married. It was beautiful, and I am lucky to have found my soul mate. It was the happiest day of my life. I also completed my master’s in social work, started working as a case manager and therapist in community mental health, and recently transitioned to being a full-time therapist, which I love. I continue to lead a monthly support group for young women with a cancer diagnosis. They are the strongest women I know and I am truly lucky to have their support right now.

I’ve started blogging again as this is the simplest way for me to keep friends, family, and coworkers up-to-date. Next Tuesday, I am receiving a second opinion on treatment options at St. Luke’s Koontz Center for Advanced Breast Cancer and will also have my port placed. Chemo starts Thursday – thankfully it’s been long enough since my first round of treatments I can repeat some. That’s good news because the initial treatment worked really well!! That also means we can exhaust these options before moving on to something else. My oncologist is hopeful that we can at least stabilize, if not decrease, the disease. AKA it’s treatable, manageable, and hopefully this dang cough will stop bothering me soon!!

I’ll keep updating as I have more to share.

 

Much love,

Cass