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.

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.

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!

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)

 

I get it. There’s a certain visual that many people expect when you say you have cancer and I don’t fit the expectation. I’m not bald, though I do have hair in the shower drain every day, and hair that has the texture of straw. I don’t look emaciated. I’ve actually gained over 15 pounds due to being thrown into menopause and having my metabolism go ice cold as a result of my medications. So, I’ve heard “But you don’t look sick” when I’ve shared that I have metastatic breast cancer.

For most people, the “metastatic” part means nothing. They just hear “breast cancer” and automatically think I’m in chemotherapy and that at some point, treatment will be over and I’ll be “cured”

But there is no end to treating this disease. No “treatment complete” celebration. Managing this disease is a marathon and  I’m at the beginning of the race. I’m lucky that I can still work and maintain a pretty active lifestyle.  My tumors are on my liver and I don’t feel any effects from them.

I do take a cocktail of drugs everyday. Two pills to fight the cancer, one pill to manage the hot flashes from the medications and early menopause, and one pill to manage the high blood pressure from the weight gain. Once a month I get a shot in my belly to keep my ovaries quiet and not producing estrogen. I have blood draws a couple times a month and PET/CT scans every 2-3 months. This is all just the routine maintenance of the disease to keep me going.

Though the cancer doesn’t affect me, the medications do. I have hot flashes, hair drying out and falling out, and gastro issues that I won’t go into detail on. Towards the end of each Ibrance cycle, I am more tired as my white and red blood cell counts are at their lowest point.

So, although I “don’t look sick”, I am sick. Someday, cancer will most likely kill me. I’d love for those around me to skip the “you’ll beat this” speak and just be aware of the marathon I’m running and that there’s usually more to someone’s situation than meets the eye.