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.

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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!