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I’m still alive!

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In the words of Monty Python, “I’m not dead yet!”

Next month it will be six years of me being metastatic. In my cancer support groups, I’m starting to feel like a “long hauler”. When I first joined these groups, there were members who seemed to be defying the odds and they were a big source for inspiration. It’s been sad and sobering to see these women literally dying off over these past years. I recently looked up one of my early inspirations in the group. She was a long hauler with liver mets with the same subtype as me. I had chatted with her in the group back in July. She was definitely struggling and was hoping to make it to Christmas. She was over eleven years with liver mets. My recent googling sadly found her obituary. She died about a week before Christmas. They had a nice video about her on the obituary site that I watched. Even though I never met her or talked to her in person, I felt like I did know her a bit and understood some things about her life. I feel a little like I lost a friend.

Prior to this post, it’s been over three years since I last wrote here. I guess I’ve been busy living and honestly, I hope that trends continues.

Cancer “Freebies”

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Cancer sucks so it’s nice that there are some organizations that offer free retreats/gifts/etc. for cancer patients. This is a list of some that I have heard about. I can’t personally vouch for many of them personally, but have seen other patients post about them in cancer groups. Feel free to comment on others that you know of and I can add them to the list.

Mary’s place by the Sea – “Mary’s Place by the Sea welcomes WOMEN diagnosed with any type of cancer, who are in active treatment or up to one year post-treatment. “

Little Pink Houses of Hope – “Little Pink Houses of Hope empowers breast cancer patients and families to live each day to the fullest, with direction, purpose, and hope for the cancer journey. We accomplish this through free, week-long vacation retreats.”

Tenaciously Teal – Cancer care package

Gracies Foundation – free cancer care package. I did get this package and it was a nice little gift to get!

Inheritance of Hope – “retreat exclusively for families facing the loss of a parent”

Cancer Card Xchange – “The Cancer Card Xchange distributes one-time gifts of various gift cards to verified cancer patients.” – check back often. They run out and then start it back up later.

Camp Kesem – “Kesem is the largest national organization dedicated to supporting children impacted by a parent’s cancer, at no cost to families. ” – My son did this last summer. WONDERFUL organization! I highly recommend.

Cleaning for a reason – “Any woman, man, or child in active cancer treatment may apply for services. Due to demand, patients are eligible to receive just one round of services through our program.”

The Case for a “Disability Card”

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I recently was granted a permanent handicap pass for my vehicle. I live in a city with limited parking and lots of hills. The pass is nice to have when fatigue hits and having a close parking spot to your destination really helps.

We also have mass transit and on most buses and trains there is a section of seats that are designated for the “elderly and disabled”. Some of the trains and buses frequently get very crowded, forcing people to stand shoulder to shoulder as the bus or train bumps and grinds along. Those designated “special” seats soon have many people jockeying for an opportunity to plop down in them.

Although I have MBC, I don’t look the part of a cancer patient. Most people don’t have any idea that I have this disease. I’m also relatively young so on the outside I can easily pass for being a healthy person.

However, that doesn’t address how I might be feeling on the inside. The drugs that I take to stay alive beat down on my immune system. This produces fatigue and there are times that standing takes all of what little energy might be left. There are also many MBC patients who have debilitating bone pain from having bone metastasis. You don’t see that on the outside.

There have been times on the train and bus where I sat in those special seats and felt judging eyes on me. I wished I had a sign that stated to these people that I was disabled and deserved to sit in those seats.

That made me think that maybe we could use a “disability card” – something that you might wear around your neck. These could be distributed in the same way that handicap passes are handled. It could be simple. Just have your name and photo for identification. They could be used to identify disabled people for seats on public transporation, special seats in theatres and stadiums, and anywhere else with “accessible” seating for disabled patrons.

What do you think?

Planning for the unplannable

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I feel pretty good right now. Though I have “extensive liver mets”, they don’t bother me at all and are currently being held at bay by my medications. But I know it won’t stay that way. At some point, at a time that I cannot predict, the disease will start it’s march again.

I’m a member of several private Facebook groups that are dedicated solely to others with metastatic breast cancer. Every day I see posts from others who are in a very different place than me. Women who are trying to manage terrible pain with Fentanyl, Codeine, Oxycodone, alternative meds… whatever can make a dent in the pain. Some have debilitating fatigue that makes just getting out of bed a major accomplishment.

The course of Metastatic breast cancer is inevitabley downhill. But what differs from person to person is how steep that hill is. Could be a quick steep drop, a slow long decline, or a mixture.

For MBC survival rates, according to the MBCN, “Median survival after diagnosis is three years. There has been no statistically significant improvement in the past twenty years.” You hear about women who live for 20 years with MBC and others who live less than 6 months after diagnosis. There is no way to know where you will fall on that spectrum. This makes planning for the future rather sketchy.

I am currently working and no one at my job knows about my diagnosis. I can’t tell you how long I’ll be able to keep up that charade. For now, I’m on CDK6 inhibitors which means I don’t have that many visible signs of my disease. My hair texture sucks and I’ve gained 25 pounds but those can fly under the radar. I’m guessing at some point I may have to switch to IV chemo. At which point, my hair may go as will my incognito disease stature.

But again, I don’t know what type of hill I’m on. Will I get to see my child enter middle school or graduate from high school? How long will I be able to work? Will the end be quick and swift or painfully drawn out?

I realize that no one really knows when their time will come and that anyone could “get hit by a bus” at any time. However, most don’t have that proverbial bus following them every day, with it eventually speeding up, and with no way for me to get out of the road.

For the time being, I try to “live in the moment” and not think too much about what lies ahead. However, after almost two years at this, it has become more challenging as I try to plan for the unplannable and manage the unmanageble.

“How are you?”

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In our society, if you are a healthy person and you are talking to someone who you don’t think is sick, asking “How are you?” is a very common and innocuous thing to ask. People usually give (and people usually expect) positive answers to that question.

In my experience, this dynamic seems to change when people know you have a serious, fatal disease. They stop asking how you are. It’s like they know that you are not fine and fear your answers and fret over how they should respond. So, they don’t ask.

For me, I’ll tell you what I’d like. Go ahead and ask. And maybe I’ll drop a few uncomfortable details about how things are going for me. Honestly, being a dying woman is a lonely affair and it’s kinda nice to be able so share out some struggles from time to time.

But here’s the thing. You don’t have to say that you’re sorry, tell me everything will be OK, or even try to solve my problem. You can just listen. If you want to go the extra mile, you could simply tell me that you’re glad that I’m here today. The medications that I take every day for this disease aren’t fun and sometimes I question whether it’s worth it. So, if those around me can remind me from time to time that they are happy to have me in their life, that’s super valuable to me.

Metastatic breast cancer doesn’t have a specified timetable for me so I’m grateful for every additional day I have. When someone tells me that they appreciate me being in their life, that means the world to me. So, please, ask me how I am and if it’s not too much to ask, let me know that I matter to you.

Going Bionic

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After limping my way through five months of increasing knee pain, I finally reached the day of my knee replacement.

The first surgeon I saw didn’t want to schedule me for a knee replacement until I had tried a couple experimental treatments first. These treatments were not covered by insurance and costed thousands of dollars. He admitted that they would not fix the issue and were just putting off the inevitable knee replacement. With my cancer diagnosis, I don’t have time to waste. I wanted to get back to where I could be fully active again, and get there as quickly as possible.

Fortunately, the next surgeon I met understood my concerns and put me on the schedule. I would have to wait about 4 months, but I was good with that.

The surgery itself was smooth sailing. I stopped taking my Ibrance for about 10 days prior to the surgery and had a blood test just before the surgery to confirm that my blood counts were strong.

After I awoke from surgery, I was on oxycodone for pain, and they had me do a short walk from my bed into the hallway using a walker. They had these leg compressors on my calves while I was laying down to help prevent blood clots. I stayed in the hospital for one night.

When I was released, in addition to oxy for pain, I was given gabepention for nights, celebrex, ferrous sulfate, and senna (to help with any constipation from the oxy). My least favorite was the self administered Lovenox (Enoxaparin) shots in my stomach that were to help prevent blood clots. It ended up not being too bad. It’s the smallest needle gauge there was and it didn’t feel like much when I stuck it into my stomach fat. I did these for about 14 days.

I’m now about two weeks out from the surgery. Below is a shot of what my knee looks like now. Still a bit swollen and bruised, but much better than when I rolled out of surgery! I can hobble around without any assistance but lately I’ve started using the cane again because I’ve been experiencing more pain across the top of my knee. They tell me this is normal but I’ll keep tracking it.

I went back on Ibrance about a week after surgery and am off the oxy. I still have some pain at night when I sleep. I do daily PT on my own three times a day and try to ice/elevate as much as possible.

I’m looking forward to regaining full use but I know that will take time. It’s a journey!

Fight of your life

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When you have a diagnosis of metastatic breast cancer like I do, friends and family like to refer to me as a “fighter”. After a year and a half into this diagnosis, I don’t disagree, but I think they might be surprised at who my major foes have been.

Aside from fighting my cancer…

I fight with my frizzy, dry hair that has resulted from the medications and can be found in the drain after every shower and all over the bathroom counter.
I fight with the weight gain that has resulted from the hard shove into menopause by the medications.
I fight with the fatigue brought on by the medications.
I fight the mouth sores brought on by the medications.
I fight the ignorance of my diagnosis from the world around me.
I fight the insurance company to cover all my treatments and tests.
I fight to go to work every day, hiding my illness from everyone around me and trying to appear normal.

And compared to some others I’ve seen/heard with MBC, my foes are relatively tame. So, I think it’s OK to refer to someone with MBC as a “fighter” but just realize the depth of foes that person is most likely battling.

Bones versus Organs

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In a recent post in one of my metastatic breast cancer Facebook groups, someone stated that those MBC patients whose breast cancer metastasized to their bones lived longer but were in more pain versus those whose breast cancer metastasized to an organ (eg. liver, lungs, brain) would die sooner but have less ongoing pain. My mets are to my liver and currently, I don’t experience pain from them. So, in my sample size of one, one part of this statement holds true. However, it was the life expectancy part that made me think a bit. Was it true? Could I find any data that might shed some light on the claim?

This brings me to a current problem about metastatic breast cancer. Those of us with metastatic breast cancer are not tracked. The NCI/SEER (National Cancer Institute/Surveillance Epidemiology and End Results) databases record when a person is diagnosed with breast cancer and when a person dies. It does not record a metastatic recurrence for someone who had early stage breast cancer. Therefore the SEER databases collect only those with an initial Stage IV (denovo) diagnosis, which represents only a small portion of metastatic breast cancer.

Since I had an earlier breast cancer cancer diagnosis, I was initially counted in breast cancer statistics. But now that I’m metastatic, my new diagnosis is not tracked anywhere until I die.

So since we don’t know how many people are living with metastatic breast cancer, or how many early stage breast cancer patients have recurrences, we also don’t have information about how the incidence and outcome of MBC has changed over time for the common subtypes of breast cancer. This means I have no way of answering my initial bones versus organ question.

There are definitely some logistical challenges of tracking metastatic breast cancer. It can become metastatic months, years, or even decades after the earlier stage diagnosis. With the spottiness of our national health records and healthcare system, one can see how connecting these dots is complex.

However, it’s important. With over 250,000 new breast cancer diagnoses every year, and an estimated 30% of those early stage diagnoses, tracking recurrence, outcomes and quality of life for those who turn metastatic is an urgent need.

Pink-tober – Let’s flip the script!

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The pink wave is almost here. This will only be my second year experiencing “Breast Cancer Awareness” month after receiving my own metastatic breast cancer diagnosis. I’ve certainly learned a lot over the past year and a half. One big thing I’ve learned is how little people understand about metastatic breast cancer.

So, I decided to create some infographics for breast cancer awareness month highlighting some of the major points about metastatic breast cancer. It’s my own spin on “breast cancer awareness”. My plan is to share these out on my own Facebook page throughout the month of October.

Feel free to take any of these and use on your own pages. If you have some you’d like to share here, drop a comment and I’m happy to add them. I’m planning on creating more so check this space for more in the coming week or so.

Free Breast Cancer Awareness Infographics

Download all at once

Oophorectomy Time

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After a year of monthly Zoladex shots to shut down my ovaries’ Estrogen production, I decided to have my ovaries surgically removed. The name of the surgery is a mouthful: Oophorectomy.  It started with a referral from my oncologist to an Obstetrician who specializes in gynecologic care for women with breast cancer. During my first meeting with her we discussed the pros and cons of having the ovaries removed and whether it’s a good move for me.

My breast cancer is ER+ so there will never be a time in my life where I want to have my ovaries producing Estrogen. Until I actually hit menopause, I can either continue to have the monthly shots or I could remove the ovaries. I decided that one less monthly shot is a good thing.

She will be removing my ovaries and the Fallopian tubes. We discussed the idea of removing my uterus as well, but that’s a bigger surgery with longer recovery, and since my current drugs are already protecting me from uterine cancers, there really isn’t a strong case to be made to remove it.

The doctor went over all the risks and said that for my recovery, if I could work from home for a few days after the surgery, that would be a good thing since I may be a little sore.

I had a vaginal ultrasound to ensure there would be no surprises for when she does the surgery. Since Ibrance weakens my immune system, my oncologist had me stop taking Ibrance 10 days before the surgery. I’ve also been trying to increase my intake of leafy greens to augment my immune system.

I had a phone consultation with Anesthesiology to talk about my medical history, current health, and discuss which drugs to take on day of the surgery. On the day or night before the surgery, she wants me t use Dial antibacterial or chlorhexidine soap (Hibiclens) to reduce bacteria and help keep the surgical area clean.

I think everything is locked and loaded. I’l update this post after the surgery.

Day of Surgery

My surgery started around 9:30am and was done a couple hours later. I hung out in recovery until some of the anesthesia wore off. My husband drove me home and I spent the majority of the day sleeping since I felt so groggy. I had 600mg ibuprofen and oxy for pain. I did have some pain on that first day but the meds managed it quite well. My doctor gave me photos of my insides! Guess our Christmas card is covered this year! LOL

Day after Surgery

I worked from home and, from a pain perspective, felt pretty managed. I did feel constipated so I started taking Senna plus to help push things along.

2nd Day after Surgery

Pain was pretty minimal. I did have a bowel movement so that was relieving 🙂 My belly is quite bloated looking. I worked from home again with little issue.

3rd Day after Surgery

I returned to work. Did not need any pain meds and wore loose fitting pants to keep the pressure on my incisions to a minimum. My oncologist told me I can start back on Ibrance tomorrow.

Overall, I’m feeling pretty good. I still need to take it easy for a week or so more (no heavy lifting, no biking, try to minimize stress on my core)