Bridge to Hospice

Yesterday I met with Dr. M and my nurse before getting fluids in me. I am extremely weak and jaundiced, effects of my liver failing. There is one more treatment option, a chemo pill, which I will try. The family is hopeful, but realistic. I will begin Bridge to Hospice where nurses will come to my home a few times a week to check my vitals, which will eventually turn to full in-house hospice. Sadly we know where this is heading. Thank you all for your kind words and support these past few weeks, Mark, Michaela and Max have been reading all of them to me.

In addition to Bridge to Hospice we’ve taken a few other measures. Below is a photo of my DNI and DNR. My family had to have the conversation of how we approach the end of my life. We purchased cemetery plots a few weeks back and we are now in touch with the funeral home to make arrangements.

Thanks for being on this journey with me for the last five years, it’s been an adventure sharing my story and MBC with you all.

Taking My Own Advice

About a year ago I wrote a blog called “Sugarcoating”. The aim of which was to enforce that talking about cancer should not be taboo. I’m going to take my own advice and not sugarcoat with you. 

 

Recently, I shared on my personal Facebook that my family had to cancel our winter vacation to Puerto Rico. Then, during the time we were supposed to be in Puerto Rico, I ended up in the hospital for a night and made light of being in the hospital penthouse over vacation. Many friends reached out expressing apologies for my trip getting cancelled, but friends, maybe I’ve been sugarcoating. It’s not about the vacation. It’s that I’m getting weaker and sicker and my liver may be failing.

 

If I always laid out these cold facts, it would be hard to be positive, so I try to find the humor or the silver lining. But, here’s the non-sugarcoated version. For some time now, treatments have not been working. Recently, I’ve been extremely tired and weak to the point where it feels burdensome and exhausting to reply to the sweet texts, messages, and posts I’ve been receiving. I’ve begun in-home physical therapy to build up strength due to weakness from the cancer.

 

My liver hasn’t been behaving. Bilirubin occurs normally when part of your red blood cells break down, then your liver takes the bilirubin and changes its chemical makeup so it passes through you. High bilirubin levels are a sign that the liver isn’t breaking down waste properly and clearing the bilirubin from your blood. Recently, the doctors at Dana-Farber have been wanting to monitor my bilirubin because my recent bloodwork showed the numbers creeping up. I’ve had an ultrasound and MRI to rule out a blockage and my overnight hospital stay was to monitor and run tests on the liver. The doctors have taken me off chemo because they think the chemo may be the culprit for the rising bilirubin numbers. We will get a more definite answer once the doctors can evaluate if it is the treatment.

 

When I was first diagnosed with MBC, there was so many wonderful people reaching out to me and that was how I started sharing this journey on Facebook and this blog. I never meant it to be the whole story of what’s going on, but to share my thoughts about different treatments, how to talk to your kids about Cancer, genetic testing, travelling with a terminal illness, etc. I don’t post or blog about everything because cancer affects everything and that would be a stream of conscience, not a blog.

 

I don’t share with you all the day-to-day of cancers because it’s so much and depressing. The day when I had to sit down after showering because it took too much to stand, the next day when I slept for 17 hours because my liver was causing weakness, the next day when my stomach was all kinds of unpleasant and I was too nauseous to stomach food, the next day when it took too much energy to take Wally to the bathroom, the next day when I cried because treatments aren’t working, etc. I’ve asked Mark, Michaela, and Max to do a lot more than I wish I had to. To be honest with you all, I had Michaela write this because I’m just too weak to even write on Facebook.

 

I chose to start this blog to share my thoughts with all of you, so this is the non-sugarcoated version. This is cancer. This is what has happened to so many wonderful people I know or have met along the way. Many friends have passed recently and it makes me plain mad and sad. This is the ugly side of cancer, not the silver lining-hopeful side. However, I still remain hopeful Dr. M has something up her sleeve to make my liver behave. I still believe in positivity and finding the good and silver-linings. But during these past few days, I didn’t care about my vacation, I care about my liver and I found it time to be really honest. 

 

Thank you to all those who have reached out and those who have read my mind that something’s up. I hope you all had a wonderful holiday with your friends and family and cheers to 2019.

Proud of Small Accomplishments

Showering, walking up the stairs, cooking, driving and walking the dog are physical activities that seem easy and something most people do daily. However, these activities are very difficult for someone whose cancer has progressed or their treatment, such as chemotherapy, is giving them some pretty rotten side effects.

I know personally what it is like having both. Recently, progression has made doing some everyday activities extremely difficult for me.

My last scans showed progression in the liver and brain. I felt awful for almost two months. I took a nap everyday around 4:00 because I just couldn’t keep my eyes open. I had vertigo and still do. Facial paralysis made it difficult to eat. My right ear hurt. My gait, then and even now sometimes looks like I’m a toddler still mastering walking, or a pinball bumping into everything.

My oncologist, Dr. M. put me on decadron, a steroid I’ve been on before and also take as a pre-med before the new chemo I’m on. While on decadron to reduce swelling on the brain, I experienced a migraine almost everyday and severe muscle weakness, especially in my legs. I had such a struggle going up the stairs, somedays it was easier to crawl up. There were times when I was crawling up the stairs and rolled over. Mark would always come and help me up and then tell me I look like a turtle on my back. Thankfully, I no longer need to take the decadron daily and some of those side effects have gone away or subsided.

I’ve been comparing myself lately to a Phoenix. The Phoenix is a bird in Egyptian mythology that was consumed by fire, later renewed from its ashes. The Phoenix symbolizes he or she has arisen from flames as a winner, beating all life challenges and defeating hard times. Therefore, the Phoenix is a symbol of rebirth from the ashes of the past, and it also represents the victory of life over death, thus immortality. No matter how bad things get, I feel like I continue to rise as a winner of life.

I have to say that that I am very proud of the small accomplishments I conquered. It took a while, but I’m gaining strength in my legs and walking so much better up the stairs.

Now I’m cooking and baking all the time, something I love to do. I can walk Wally a short distance and I can drive my car if I really need to. And you know what? I’m getting stronger and better every day.

Wishing everyone a very Happy Thanksgiving. I’m thankful to be spending the day with my beautiful family.

Please check out this website. I wrote an article for them a few months ago. Great place to find information and support.

http://sharecancersupport.org

5 Years: 2,682,000 Minutes

When I was first diagnosed with MBC, I had no idea what my life expectancy would be, no one did. The average life expectancy upon diagnosis with MBC is 3 years. Only 1 in 5 living with MBC live to five years. This past September, I passed five years living with Metastatic Breast Cancer. I know I am so fortunate, but the longer I am living with this disease, the more I prepare for the uncertainty, mentally and physically. Lately, it’s been more mentally.

At my most recent Endocrinologist appointment for my thyroid cancer, my doctor told me she has not treated a MBC patient with thyroid cancer for this long. I remember thinking right there how fortunate I am to still be thriving.

During October, Breast Cancer Awareness Month, all the pink is in our faces. Michaela and I spoke the other night about “pink, pink, you stink” and how, over these past 5 years, so many women we met or followed on their own MBC blogs are no longer with us. Holley Kitchen, Beth Caldwell, Larissa Podermanski, Susanne Kraus-Dalhgreen, Andrea Parker, and so many others.

I think about treatment options the most right now. Are they going to stop progression, and if so, how long are they going to last? I don’t have the best track record with treatments lasting a good amount of time. How many more are out there for me?

The latest chemo treatment didn’t work. My recent scans showed progression in the liver and brain. I knew something was up before my scans. I was experiencing fatigue, weight loss, pain, weakness, and loss of balance (I had fallen a few times).

A few weeks after the scans, I started to experience vertigo and facial paralysis. A repeat MRI showed nerve problems due to progression.

I’m on quite few medications to help deal with these symptoms and have started a new chemotherapy called Irinotecan. I receive it once a week for two weeks with one week off. Fingers crossed I get some good mileage out of this treatment.

Real Life ‘23 and Me’: Genetic Testing

Ever since I turned 21, primary care physicians and my OBGYN have asked if I plan to get tested for the BRCA II gene mutation. “Yes,” I always replied. “The first step is to get life insurance; the second step is to set up an appointment.” There was never a doubt in my mind of if I would get the genetic testing done, but rather when.

When the topic of genetic testing comes up in conversation, people often ask if I’m nervous finding out the results of the genetic testing. The genetic counselor I met with asked a similar question. I find this question interesting because I’ve never been nervous. I’ve always wanted to know whether or not I carry the gene mutation. Why? I can either be watched closely by doctors with puzzle pieces missing from my medical records or my doctors and I can be equipped with a full picture of my health risks. I choose the latter.

I think anyone who has had or has a parent with a serious illness always wonders about his or her own health- will I too have a similar diagnosis, is this hereditary? To feel equipped with all the facts to make the best decisions about my health, both in the present and for the future, my doctors and I need to know about my genetic makeup via genetic testing. A simple blood test will show my genetic risk factors- not just the BRCA II mutation but any other mutations that can impact my health.

There will be two outcomes with my blood test results. Test comes back negative for BRCA II, in which case I will be watched closely by doctors, receive routine mammograms, and monitor changes in my body. Test comes back positive for BRCA II, in which case I will be watched closely by doctors, receive routine mammograms, and monitor changes in my body. Notice a difference? No, because there really aren’t any in the immediate future. If I test positive there may be a need for MRIs in addition to routine mammograms and I will be watched even more closely by doctors. As I age, more scans or tests may be needed and I may partake in surgeries after I have children, but my current course of healthcare does not change. As science and medicine progresses, I may even be able to prevent passing the genetic mutation(s) to my child(ren) if I am a carrier.

My mom touts be your own healthcare advocate. Of course I agree! Arm yourself with as much information about your body, family medical history, and health risks as possible. Have open and honest communication with your family about your family’s medical history. Just as my mom discovered her original cancer diagnosis by going to the doctor regarding an abnormal lump, we should know our bodies, our health risks, and be aware of changes. Be your own advocate. Put the puzzle pieces of your health together. It starts by having conversations with your family and doctor.

Who should receive genetic testing?

https://www.cancer.org/latest-news/should-you-get-genetic-testing-for-cancer-risk.html.

What is the BRCA mutation and how can it cause cancer?

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet

-Michaela

Vacationing with Cancer

Summer, a time for pool parties, cook outs, mosquitos, heat and humidity, the beach, fried New England seafood and vacations. Vacationing when you’re living with cancer takes some preparation.

Before Mark and I left for Las Vegas a few weeks go, I needed to coordinate with my treatment schedule and make sure I was healthy enough to travel. It just so happened that I had appointments with my Endocrinologist, Cardiologist, Medical Oncologist and Radiation Oncologist the week before. All was fine, except for falling red blood counts, but thankfully a blood transfusion took care of that and I was ready to rock and roll, or rather gamble and eat!

When we were in Las Vegas the weather was very hot. Many people said not to worry “it’s a dry heat”. Well, heat is heat and when we were visiting it was 109 degrees WITH humidity. We made the best of it.

Because traveling does take some preparation, I would like share some items I take with me or things that I do on vacation that might be helpful to you as well:

• A thermometer. After experiencing Febrile Neutropenia, extremely low white counts with a fever, indicate signs of infection and will result in a visit to the hospital.
• Sunscreen. I have a bald head and do not wear a wig or any type of head covering in the summer. I slather sunscreen everywhere, but pay special attention to my head and anywhere I received radiation. I have lymphedema in my right arm and hand and usually wear a compression sleeve and glove, so I use lots of sunscreen on that arm if I’m in the water or if I’m not wearing the sleeve and glove.
• Medications. I take any oral cancer treatments along with my daily medications such as allergy, high blood pressure, thyroid, etc. I also take pain, anti diarrhea and stool softener medications. As I mentioned, I have lymphedema so I can’t forget my compression day sleeve and glove, my night sleeve and pump.
• Hydrate. I can’t stress this enough, especially in the heat. Being dehydrated can cause dizziness and weakness. It can also flare up symptoms from the illnesses you already have.
• Rest. Take time to rest or take breaks. I take it slow and feel refreshed after resting for a bit. I also alternate indoor and outdoor activities. It’s nice to rest in an indoor air conditioned space, especially when it’s 109 degrees!

I hope these suggestions will help when you are traveling.

My family and I will soon be heading to Long Island New York for my niece’s wedding. After the festivities, we will be vacationing in the city. I hope I don’t forget to pack and do all the things I suggested! Maybe I’ll just write a list so I don’t forget.

I wish you all a great rest of the summer. Enjoy!

My Cancer Tribe

Cancer sucks! There really is nothing great about it. However, I always try to find the silver linings and share them with you all. Here’s another: Friends.

I am fortunate to have friends who provide support, encouragement, help and love. I have had many of these friends before I had cancer and I’ve met many new friends since my diagnosis. Some with cancer, some not.

When you have cancer, or any health issue, it’s comforting to speak to others who share a similar experience. There is so much information to share with one another and these friends have an understanding what it is like living in Cancer Land.

Colleen and Anne are two wonderful friends I met a few years ago because we share something in common…..Breast Cancer. Colleen has Metastatic Breast Cancer and Anne, thankfully is NED (no evidence of disease).

Conversing about treatments, ports, oncologists, side effects, blood counts, etc. with one another sure was, and still is helpful. It’s nice that we all live in the same town or are just a text away.

I belong to many Cancer groups on social media and have made many new friends who I have not yet met in person, but have developed nice relationships with. We also share information concerning our disease.

I like this silver lining. It’s always nice meeting new people.

This past week I visited with my Radiation Oncologist, Medical Oncologist, Cardiologist and Endocrinologist. All is good except for low red blood counts.

I will probably be getting a blood transfusion this Thursday. This will be great timing because I will need all my energy to enjoy my vacation. Yep, Mark and I will finally be jetting off to Las Vegas.

I would like to share with you all about our vacation when we return, but what happens in Vegas, stays in Vegas.

Have a wonderful Fourth of July!

A is for Afib, B is for Brigham’s, C is for Clinical Trial

I’ve been wanting to write a new blog post for a while now, but I couldn’t find the time…or I was just too tired. Now is a good time. I’ll be waiting 2 hours for blood from the blood bank, and then will sit for another 2 hours, while it flows through my veins.

Today is a gorgeous one and I would rather be outside planting flowers than getting a blood transfusion. This will be my second one in two weeks.

Three weeks ago, I began a phase 1 clinical with high hopes. After beginning the drugs I started noticing side effects. My vision was wonky, I had no appetite, I was tire, weak, and, most frightening of them all, palpitations and a racing pulse.

During one of my Dana Farber visits, I had an EKG. During this procedure, it was determined I was in AFib! What? I was brought over to Brigham and Women’s hospital.

I was in the Emergency Department for 5 hours receiving IV and oral medications to slow my heart rate……nothing changed! I was admitted.

I met with a team of Cardiologists during my stay and had blood work and some tests. Some blood work was repeated from my DFCI visit. I was showing very low platelets and Neutropenia (very low white blood counts). Not good!

What was causing all this? I was hoping it wasn’t the trial medications, but I did blame them because what else could it be? The cause of the Afib was not caused by the trial medications. The low blood counts, weakness, vision disturbances and other side effects were from the trial medications. So what did cause the Afib?

Afib can be caused by many things such as heart disease and medications. The Cardiologists are not quite sure with me, but think it could be high doses of thyroid medicine. They wanted to put me on a blood thinner because Afib can cause strokes and blood clots, but with my platelets being so low, they cannot. I will be visiting with a Cardiologist in a few weeks and hope to have answers to my many questions.

I bet you’re wondering about the clinical trial. I was dropped! I’m happy I did not have to make the difficult decision to continue on the trial or stop due to all the side effects. The Afib made the decision for me. I guess one of the trial requirements is not to have Afib.

As for my next treatment, all will be decided next week when I meet with Dr. M.

With all the nasty stuff going on, there has been good stuff too. Max finished his very successful first year at UMASS and is home for the summer. Michaela will be attending Boston University School of Law in the fall and is currently checking out apartments. This will be the last summer we are all together under one roof. Once my blood counts wiggle their way up and I’m feeling well enough to travel, Mark and I plan on jetting off somewhere to spend time alone.

See, my life isn’t so bad. It’s all about perspective.

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.

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!