Superstitions & MBC

As I’ve gotten older, I’ve noticed people reach a certain age and want to stop acknowledging their birthday because it indicates they’re getting older. But, I’ll tell you what, it’s a privilege denied to many. Birthdays are special and everyone should celebrate being a year older. Having a birthday means I’m alive and that makes me happy.

For the last 5 years while having MBC my husband, Mark, has offered to throw me a birthday party, with a special one when I turned 50! I always enjoy celebrating with family and friends, but this past February I decided I didn’t want a party this year. Why? Well, I became superstitious.

I realized after each party, I had scans within the following weeks. They always came back with the cancer progressing! The coincidence that my health always took a decline after a birthday party led to my concern that if I had a party this year, my health would decline. So this year there was no cake, food, drinks, music or trivia.

So, after not having a party this year, did my health decline? Well, it’s a little confusing. My scans looked good, but I felt awful. I was suffering from severe fatigue and weakness, terrible pain in my legs, no appetite, and a slight rash. I’m not sure what to think about not having a birthday party. If I had one would the scans have showed progression? But even with no progression in my body, the way I was feeling was declining due to the side effects from my treatment.

I had scans again last week and for the most part they looked good with the exception of one lesion on my liver which has more than doubled in size. Dr. M decided to take me off my treatment due to the lesion growing and terrible side effects. I’m relieved.

Next up will be a clinical trial for me. This one is a phase 1 clinical trial going on at Dana Farber and Mass General Hospital. This trial consist of two medications. The first is Ribociclib: a hormonal-based therapy, FDA approved, and comes in pill form. The other medication is PDR001: an antibody. PDR001 is not FDA approved and is being tested to see if it will allow the body’s immune system to work against tumor cells. This is known as immunotherapy. This treatment will be done through infusion.

I feel very fortunate to be at Dana Farber with access to clinical trials and I am thrilled that I received the one slot left to participate in this clinical trial. I’m also a bit nervous due to potential side effects, but I am hoping for a positive outcome!

So the question remains, will I have a birthday party in 2019? I’ll let you know next year.

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Tired… Physically and of Cancer

Today I took the day off… from doing anything. I didn’t shower, stayed in my pajamas, and didn’t make the bed. I ALWAYS make my bed. Today, I just didn’t have the energy, and that’s okay.

I was seen by my nurse practitioner last week for a regular checkup and blood work. According to my blood work it appears my red blood count cells are on the low side. We think this may be from one of my medicines and why I feel such fatigue.

I was told to take a five day break from this medicine in hopes that the low counts would rise, but during this break I actually started feeling worse.

I recently had an appointment with my endocrinologist to check on the thyroid cancer. All is fine, but while I was there, I asked to have blood work done to see what the heck is going on with the red blood counts. Turns out they didn’t rise, they didn’t go down, but remained the same. Hmmm…. we will definitely be monitoring this situation in case I need a blood transfusion.

Because of the red blood counts being low, I am very tired and weak and it’s difficult to do things. This week, showering used up a lot of my already low energy. I have to sit down and rest when I get out of the shower before I get dressed. Going up the stairs wipes me out as well as do many activities. Thankfully, for some of these activities my awesome family picks up the slack.

I feel terrible about not feeling well this week. Max is on his spring break and I wanted to cook some of his favorite meals. Instead he needed to help me. Michaela and Mark too.

Mark knew I was upset about not feeling well and gave me a great big hug. I gave him a good cry. I needed a release. I’m tired of living with metastatic breast cancer. I’m tired of feeling like shit. I’m tired of having to go to Dana Farber all the time. I’m tired of being sick and tired.

Boy, that felt great to get off my chest. I feel so much better emotionally after having that cry with Mark. I find a good cry to be very cathartic. If you need a release, try it. I bet you’ll feel better.

The treatment I was on prior to this one was very tolerable. I felt as if I didn’t have cancer while I was on it. I had an appetite and lots of energy. I felt invincible. Unfortunately, like many of my treatments, it stopped working.

In two weeks I will know if my present treatment is working. I will be getting scans and will meet with Dr. Mayer. While I certainly hope the scans look good, I dislike very much being on this treatment because of the way it makes feel.

As for the squiggle in my brain, we still do not know what it is. I had an MRI recently, and the squiggle appears smaller. We’re doing a wait and see approach with another MRI in seven weeks to see if it’s still shrinking.

Thank you my dear Mermaids for letting me do some venting. Metastatic breast cancer sucks, but my life is wonderful. I will continue marching forward….unless it takes too much energy, then I’ll walk.

Happy St. Patrick’s Day!

What’s In A Number?

Most times when I have an office visit at Dana-Farber (an appointment with the doctor, prior to receiving treatment, on scan-day, etc.) I have blood work done. Before you can receive your cancer treatment, whether it’s a chemotherapy infusion or an oral chemo/medication, you need blood work done. These tests check your white and red blood counts, platelets, liver and kidney functions, and mineral/electrolyte levels.

Oncologists also check tumor markers via blood tests. A tumor marker is a biomarker found in the blood which can be elevated by the presence of one or more cancers.

If the numbers for these tests are not in the normal range, your treatment may be delayed. For instance, if your red counts are very low, you might need a blood transfusion before you can continue treatment. If your white counts are very low, you will have to delay treatment until they rise. If this happens you often need to take Neulasta or Neupogen injections to raise the white counts.

Testing tumor markers intrigue me. Usually, when treatment is working, my tumor markers go down. When treatment stops working, my tumor markers go up, which is confirmed by scans.

My current treatment is a combination of Afinitor and Tamoxifen. I hate the side effects of this combo… but for now the scans show the combo is working. However, the tumor markers tell a different story.

My tumor markers have been very high on this treatment, which worries me. I’m due for scans in early April and am anxiously waiting for the results. My oncologist told me not to worry. The scans tell the whole truth, not the tumors markers.

On the topic of scans…I recently had a follow-up brain MRI to recheck a spot found on a previous MRI. Guess what? No one knows what the heck it is. My radiation oncologist calls it “ambiguous” due to its shape. We are taking a wait and see approach with another MRI in a month.

Oh well, I have learned there is always something when living with metastatic breast cancer. I guess this makes life exciting, but not always in a good way.

Planning, Oy Vey

You know what I hate about Metastatic Breast Cancer? Well, just about everything, but today I will focusing on planning.

Planning vacations, lunch dates, events, etc. are difficult to do when you have an illness. One never knows how they will be feeling on those days.

I have cancelled so many lunch dates with friends recently due to fatigue. We reschedule, but I always feel terrible having to do this. We all have busy lives and getting together can be challenging. Thankfully, my friends understand.

Vacations are the absolute worse to plan. Don’t get me wrong, I know how fortunate I am to go on vacations but it becomes disheartening when plans have to be cancelled over and over again. We have had to cancel a Mediterranean cruise, a trip to London and Paris, and most recently a trip to Italy all due to my health. We try to book our trips close to the time we will be vacationing. For our Italy trip we booked 8 weeks out. I was feeling great at the time of booking and was pretty confident I would still feel great in 8 weeks. I was so wrong.

Lesions on my liver started to grow and I needed to begin a new treatment. This oral treatment made me feel very weak and tired. There was no way I could walk the beautiful streets of Italy. CANCELLED!

One word of advice from me when planning a trip is to always buy the trip insurance and make sure it includes pre-existing conditions.

Although I missed Italy, I was able to enjoy a New Year’s Eve cruise to the Bahamas. The weather was not the best, but it was nice to get away and spend time with family. Three of my siblings and their families joined us. It was wonderful to be able to relax and hang with them.

When I returned from the cruise I began to notice some bothersome side effects. Along with fatigue, I was experiencing bone pain and numbness on the right side of my chin and inside my mouth. I recently had scans and all look good. I will continue on the same treatment since lesions on my liver are shrinking. We will deal with the unpleasant side effects.

The MRI I received is a little concerning. The radiologist noticed a spot. He called my oncologist and asked her if I had a stroke. WTF?! A STROKE?! My oncologist does not believe this spot has anything to with a stroke. Most likely it is a new cancer growth that needs to be zapped. I am going for a follow up MRI in three weeks. I will then meet with both my radiation and medical oncologist to discuss what this spot is and how we will deal with it. More planning… appointments, scans, Oy vey.

Life continues……

HAPPY NEW YEAR

The Good And The Bad

This time of year is magical and full of wonder as we celebrate the winter holidays. It also brings up many emotions as we think of those who have passed, are ill, or are going through a rough time.

Last week I was on a roller coaster of emotions. I was thrilled to read about a friend who I met in Pilates class years ago who just celebrated seven years cancer free. I was also informed that a high school friend passed away who I had reconnected with. We shared thoughts on treatments, blood transfusions, side effects and how we mutually hated cancer.

While I am so happy for my friend and others who are living with NED (no evidence of disease), I’m sad and angry for those who succumb to this disease. Why do good people die too young? Of course, no one has the answer, but I do take comfort knowing my friend is no longer suffering. She will be missed.

It’s natural to think of our own mortality when someone dies, especially when you have a terminal disease like metastatic breast cancer. While I do plan for the day when I no longer will be on this earth, I also feel invincible. I feel like I will live forever, but I know this is not true. While I’m living my life I will continue to enjoy every day, enjoy new experiences, and make lots of memories with family and friends.’

Now, on to happier moments.

This week in my home we are celebrating Chanukah. It’s a joyous holiday. We light the menorah for eight nights. We remember the miracle that happened about 2,000 years ago when there was only enough oil to light a Temple for one day, but miraculously lasted for eight days. Do you believe in miracles? I do.

My son, Max, is coming home soon after he finishes his college finals. Although he couldn’t celebrate Chanukah with us, it will be wonderful to have my family together again. And, in a couple of weeks I will get to see three of my siblings (minus 1) and their families. Yay!

As for me, I am feeling well. I’m a bit tired and weak from the meds, but all my blood work looks good. I’ll be getting scans in mid January and depending on the results, we’ll decide if I want to stay on these meds.

I hope all of you are feeling well, and enjoying this holiday season. Happy Chanukah, Merry Christmas and Happy Kwanza. I wish you all a very happy New Year filled with love, laughter, good health and peace.

The Kindness Of Friends

I recently started a new treatment to try and put a halt on the progression of liver lesions and growths on my brain. This new treatment consists of Tamoxifen and Afinitor.

After being on these meds for two weeks, I developed mouth sores and a bad rash. In addition to hives, I also got shingles. Shingles!? It turns out that it was due to being on a high dose of Afinitor. It was reeking havoc with my immune system and resulted in low blood counts and platelets. I was taken off of the Afinitor until the shingles cleared up and my blood counts and platelets returned to normal. I was also given a steroid rinse for the mouth sores and Acyclovir for the shingles.

Throughout all of this I became very tired and weak, lost my appetite and in turn lost weight. Taking a shower or taking Wally out to do his business took all the energy I had. I texted Mark at work to come home early one day because I was so weak.

I met with Dr. Mayer yesterday and things are looking better. In the two weeks I’ve been off the Afinitor my blood counts and platelets have returned to normal and my liver tests look great. Best of all, I’m feeling much better. Dr. M said all of this was probably due to the high dose of Afinitor and not the cancer. Whew!

I am now back on Afinitor along with Tamoxifen, but at a lower dose. We’ll see what happens next.

Unfortunately, Mark and I had to cancel our trip to Italy. I’m still somewhat weak and am not sure how I’ll feel on the lower dose of medication. It’s like an experiment. I’d like to thank Maria Dowling at Enchanted Memories Travel in Franklin. She planned the entire trip for Mark and I and then handled the entire cancellation. No easy task! I would highly recommend Enchanted Memories Travel ( https://www.enchantedmem.com/ ).

I always look for the silver lining in situations and there was one in regards to this situation…MY FRIENDS!

A couple friends offered to walk Wally, many asked if I needed anything, I received flowers and cards, a pair of inspirational socks and plenty of good wishes. It’s nice to know that I can always count on the kindness of friends.

Tomorrow is Thanksgiving day and I would like to take this opportunity to tell all my friends how thankful I am for having you in my life. I wish all of you and your families a very Happy Thanksgiving.

We May Be Numbers, But We’re Also So Much More

Hello Mermaids! It’s been a while since I’ve written a post, but it’s been a busy time for me. I have been doing interviews with different media outlets about my blog and living with metastatic breast cancer. You can read some of these interviews in the section of my blog,  ‘Featured In’. There will be more posted by the end of this month!

One of the main reasons I chose to blog about Metastatic Breast Cancer was to educate and give hope to others with MBC. Therefore, I also believe it is my responsibility to educate myself on the latest in the field of metastic breast cancer. Dana Farber Cancer Institute, where I am treated, hosts an annual Metastatic Breast Cancer in conjunction with EMBRACE.

EMBRACE (ending metastatic breast cancer for everyone), is a clinical program launched in August 2016. Doctors and researches collaborate to better understand MBC, “with the hope of improving treatment options now and in the future.” Over the years, I have donated blood work and tissue samples from previous biopsies; all with the hope of improving treatments. 

This year I was asked to speak on the patient panel of the forum with three other women with MBC. In this post I would like to share with you some of what Mark, Michaela, and I absorbed during the day. 

Dr. Eric  Winer, (Director, Breast Oncology Center, Susan F. Smith Center for Women’s Cancers), began the day with opening remarks. He spoke to both the hope and the reality myself and others with MBC face. The hope: There has been more progress in the last five years in the field of MBC than the previous 20 years; doctors and researchers are moving closer to the day where  stage IV breast cancer is treated like a chronic illness, like diabetes or high blood pressure. The reality: We aren’t there yet and we might not reach the ultimate goal in our lifetimes. The quality of life we have on treatments and the efficacy of treatments still have a long way to go.

Dr. Winer also talked about how those of us with MBC have a unique emotional side to the illness. We have family and friends who want to talk about our disease and others who don’t. We all want to live our lives as much as we lived them before our disease. We are numbers and statistics, but we are also so much more. We talked a lot about what it’s like living with MBC on the patient panel. I talked about how metastatic breast cancer does not define my life; I talked about how I cope with living with MBC; I talked about how I don’t worry about things I can’t change or control. The other women and myself echoed one another’s thoughts; the common theme: we do not let MBC define us. It was so great to speak to so many inspiring women!

Dr. Erica Mayer, my oncologist, spoke about new research and treatments in Estrogen Receptor Positive MBC. (I am ER+, there is also HER2+ MBC, and Triple Negative MBC). It was uplifting to see how far we have gone in the “toolkit” of treatments. It was disheartening to see how many treatments in the toolkit I’ve had already gone through; I mentally checked off quite a few on the list. At the same time it was uplifting to see how far research has come. Many of the treatments that gave me extra months have only been approved in the last three years. It’s because of the women with MBC who came before me and others with MBC that we have reached the point we are at in treatments for MBC.

Now, it’s time to take another peek into the toolkit for another new treatment. I met with Dr. Mayer two weeks ago to discuss recent scan results. My bones and lungs look great, but my brain has a new spot, and lesions on my liver continue to grow.  Because of these results I need to stop the chemotherapy I have been on for the last eight months. Eight months was a very long stretch on any treatment for me and I’m glad it worked for as long as it did! The treatment I recently started is a hormone therapy, rather than a chemo, and consists of two pills daily. My toolkit of treatments is running low and I hope this new treatment will work in stopping progression. Soon, I will need to look into clinical trials once my options of hormone therapy and chemotherapy run out. (For MBC, the hope is for hormone therapy to work, chemo is an option for when hormone therapy doesn’t work or more aggressive measurures need to be taken, and clinical trials come into play when those other treatments types run out.)

Lastly, here is a link to an interview I recently did with Reader’s Digest about living with Metastatic Breast Cancer. This is very special to me because I got to be a mermaid and worked with such wonderful people in putting this article together.

LINK: https://www.rd.com/health/conditions/breast-cancer-mermaid/