Numbness, tingling and pain…Oh My!

It’s been a few months since I’ve been on Eribulin and I’m feeling great! I’m driving again and walking longer distances. My appetite is back in full swing, except after receiving chemo. My white and red blood counts remain steady and my tumor markers keep going down. All is great, except for one side effect, chemo induced peripheral neuropathy. 

Peripheral neuropathy is nerve damage and can be caused by many factors. A few include diabetes, autoimmune diseases, vitamin B deficiencies, and of course chemotherapy. 

Symptoms and side effects of peripheral neuropathy include, numbness, tingling, shooting pain, throbbing, and balance issues. I’m experiencing many of these symptoms. I started with slight numbness in my finger tips. I’m on medication for it and recently had my dosage changed, but the neuropathy has become worse. I now have it in my feet and lower legs. 

To help with these side effects, a reduced dosage of chemo is usually the way to go, or stopping the chemo for a while. Since I’m doing so well on the Eribulin, I’m hoping that I won’t have to do either.

I’m so happy these days that my primary concern is the neuropathy. Neuropathy can become very serious and effect your heart and organs if not taken care of. My medical team is on top of it and I let them know of any changes.

Enough about that! 

I think most of us with children have sent them back to school by now. My daughter, Michaela, has gone back to The George Washington University, where she is a senior, and my son, Max, has started his senior of high school. I wish all your children a successful school year. 

You might have noticed the mornings and evenings are becoming cooler and the days are getting shorter. I know many want to hold on to the hot summer weather, but not me. I’m looking forward to the cool, crisp days of fall….my favorite season.

Take care, Mermaids. Always believe that something wonderful is about to happen.

Always Have Hope

A few months ago, I thought it was the beginning of the end; I thought I was dying. My cancer had been spreading like wild fire through my weak and tired body for eight months. My oncologist told me my treatment options were becoming limited. How could I not think I was dying?

I never give up hope and I believe in miracles. My family and friends give me much love and support, which helps get through the rough times and celebrate the good times. I was so happy this week to share some good news, finally. I am not dying, at least for the time being.

Last Tuesday I received scans. Thursday, I met with Dr. M to discuss the scans and treatment. Dr. M came in the room with a big smile on her face. She said hello, shook Mark and my hands, and sat down. The first sentence out of her mouth was, “I am thilled with your scans.” All tumors, lesions, and lymph nodes have shrunk. My tumor markers have come down 90%…. WOW! Dr. M and I hugged with big smiles on our faces. Mark had a big smile on his face too.

I love receiving good news about my condition, but I always remain cautious. Some treatments last for a long time, some do not. I have experienced both sides of treatments. However, I am thrilled, and rejoicing at this wonderful news. 

Eribulin, my chemotherapy, will be given every other week instead of two weeks on and one week off. My white and blood red blood counts go way down after receiving Eribulin and take more than a week to come up in order to receive chemo. This is because my bone marrow is tired from receiving so much chemotherapy. I will also be taking neupogen injections to help keep the white counts from getting too low. 

As you might know, I try to look for the silver lining in everything. Right now the silver lining is weight loss! Between my thyroid, and cancer treatments starting in 2010, my weight fluctuated quite a bit. In March of this year, I lost my appetite. This continued until June before starting the Eribulin. I am happy to say my appetite has returned! I am content with my weight now. I needed a new wardrobe, and Michaela and I had a lot of fun shopping for new clothes… And we still are!

Thanks for reading my blog, and supporting me through the ups and the downs.
This photo was taken a couple of weeks ago by the talented Paul Vicario. He, and the talented Dee Lewis have captured the “real me” through their beautiful photos. 

Back In The Saddle

On June ninth I began my new chemo, Eribulin. It is a very quick chemotherapy that is given as an intravenous push in just 5 minutes. While it is an easy chemo to receive, it has a host of side effects. The most common of these include low white and red blood counts, hair loss, nausea and peripheral neuropathy. 

A few days after receiving my chemo, I noticed a thick white coating on my tongue and my mouth and throat felt sore. I was extremely tired and very weak. I was not eating or drinking much and would vomit if I did. I found out that the thick white coating on my tongue was “thrush” caused by the chemo, and chalked the other symptoms up to the chemo as well. It was an awful week.

On June seventeen, Mark brought me to Dana Farber for my chemo treatment. I was so tired and weak I needed to be in a wheelchair. I felt terrible. I had my blood work done, and then proceeded to go get my treatment.

My oncology nurse came out to the waiting room to let me know my white counts were very low, and I would not receive chemo today. While she was speaking with me she noticed right away I did not look well. She brought me to get my vitals. My temperature was 102.2. Not good. Not good at all. My nurse called Dr. M and right away and they whisked me over to Brigham and Women’s Hospital. 

I had febrile neutropenia. In a patient with neutropenia, there is an abnormally low number of neutrophil granulocytes (a type of white blood cell) in the blood. Febrile neutropenia is the development of a fever, often with signs of infection in the patients with neutropenia. I won a wonderful five day stay at the Brigham.

I was first treated in the emergency department. I was asked so many questions by so many people. I remember being so tired answering these questions. In addition to the storm of questions, I was given IV antibiotics, fluids for dehydration, an EKG, and blood was taken for tests and cultures. When a room was ready, I was admitted.

I met with a doctor who asked more questions. When he left I met the night nurse. She explained I would be hooked up to two different antibiotics around the clock. I would also receive fluids, a lot of fluids. The nurse swabbed me for the flu and a couple of other illnesses. I finally was able to go to sleep.

That night I remember the nurse coming in quite often to change IV bags, take blood, and check my vitals. I wished I was home.

Morning came fast. An attending Doctor and interns came to see me bright and early. I didn’t realize how serious neutropenia was until I spoke with the Doctor. She told me I had hit rock bottom. Damn! I could have died! Mark and I will always be grateful we were at Dana Farber the day before, my nurse was quick acting, and the great care I got at Brigham and Women’s Hospital.

My days in the hospital revolved around getting my vitals checked every four hours, antibiotics and replacement of electrolytes. I was also treated to a blood transfusion (for low red blood counts) and a brain MRI. My white blood counts started to come up by themselves and the docs were all very happy.

Although I had many tests, swabs and cultures to find an infection, the docs think maybe my left index finger was infected. Weird? I never noticed anything until my first full day in the hospital, when I showed a red dot to the docs. It did get worse, and then better, during my stay. I was sent home with an antibiotic to take for a few days, just in case the finger was the cause of an infection. 

It was wonderful to be home and I felt great. Wally dog was happy to see me, and I him. I drove for the first time since the end of March. Whether it’s the chemo working, or all the antibiotics, fluids, blood transfusion, etc. I received in the hospital, I have not felt this well in months. 

After this ordeal, I was very nervous getting another round of Eribulin. Dr. M lowered my dose and I started giving myself neupogen shots to help keep the white blood counts up. I had my second dose of Eribulin four days ago. I am tired, I lost my hair, and my eyes are tearing.

Neutropenia is scary, but I feel better having a lower dose of chemo and taking the neupogen shots.  I also monitor my temperature very closely. For now, I’m checking it at least a few times a day. When you receive chemotherapy you’re suppose to monitor your temperature. Anything over 100.4 warrants a call to your oncologist. 

As for the side effects that I had after my first dose of Eribulin, were they due to the chemo? Low white counts? Infection? Who knows. I’m just happy to be back in the saddle again, as Aerosmith would say. 

 

Why?

Why do some people get cancer? Why do some people have gene mutations that cause cancer? Why do some cancer treatments work on some, but not others? When I was first diagnosed with breast cancer in 2010, I never questioned why breast cancer chose me. In 2013 when it returned, and metastisized, I certainly questioned why.

I got over questioning how I got cancer in the first place because I will never have a definite answer. It could be because I have the brca2 mutation and I was also DES exposed in utero. DES was a drug given to pregnant woman in the 60’s to prevent miscarriage. It could be a combination of both..I’ll never know.

Unfortunately, I’m entering a sobering phase of my breast cancer. Since March of this year, I have not been feeling well and had to cancel a summer vacation to Italy. I started to lose my appetite, and have lost quite a bit of weight.  I feel weak and tired quite often. I haven’t driven my car since April, but she is being taking care of by Michaela, who drives it to her internship. The poor intern driving a Mercedes. I digress. I have a host of other symptoms, primarily liver and shoulder pain due to increasing lesions, and a cough due to the increasing size of lymph nodes between the lungs.

At my visit last Thursday with my oncologist, I was told that I was running out of viable treatment options. Any cancer patient knows that when you hear this, death is getting closer. I am not giving up hope yet, but I am realistic. I began a new chemotherapy that we hope will be the miracle to stabilize the cancer. There might be one more viable option after this chemo and there may be other options, but we may be just grasping at that point.

So what do I do now? I prepare my legacy. I have been very tired so it is taking a while, but I will get it done. I want my children to know all about me, and to have something from me when I’m gone. 

I’m not sure how much time I have, but it makes me angry that I might not see Max graduate high school next year and go off to college. It makes me angry that I might not see Michaela graduate college next year. It makes me angry that I will not become a grandmother. How sweet it would be to snuggle with my itty bitty baby grandchild and spoil it rotten. It makes me angry having to leave the love of my life, Mark. Our 26th wedding anniversary is next week. We were suppose to grow old together. Cancer, you are taking me away from my family and friends (and dog Wally) who I love. I hate you!

I pray this new chemo will help me feel better, and of course stabilize the cancer. I will be honest with all of you, when you have days in which you feel crappy from the chemo and/or cancer, and need help doing everything, you just don’t want to go on. I have had days like this, but a talk with Mark (or my dog Wally who is a great comfort and listener) makes everything better.

A Day in the Life of a Caregiver by Michaela B. Rosen

I was faced with a decision for this summer: to return home or to remain in D.C. (where I attend school). I had a list of pros and cons, and the glaring con to staying in DC was mom was home. The day I received an amazing internship offer back home, I also received a phone call from my mom following a doctor’s appointment with scan results. My mom told me the cancer was getting worse, so in a heartbeat I told her I would be home this summer.
When I returned home I could tell my mom lost weight (no, not in the “summer is coming” way). My mom has been gagging, her stomach has been hurting, she has been minimally eating, and she has been sleeping most of the day. While at school, I could tell from her voice on the phone she was not herself, but seeing her in person…she just looked depleted.

Exactly two months ago my mom and I were in Las Vegas for Spring Break losing at the Black Jack tables. My mom walked the entire Vegas strip, walked to different hotels and casinos, and stayed up until the early morning with me. In these past two months, cancer decided to be a dumbass (pardon the language). Now my mom and I are at home relaxing on the couch watching TV (until I start working). My mom moves from her bed to the couch, I get her whatever food and drink she can stomach for the day, and I take care of Wally. (Max of course helps out and my dad is truly SuperDad and SuperHusband.) 
An unknown piece to metastatic cancer is the effects of constant changing of treatments. My mom has educated everyone on how once a treatment stops working, you move onto the next, and the next, and the next… until there are no more. However, once she starts a new treatment, we as caregivers must adjust as well. Is her fatigue from the cancer or the treatment? Is the treatment working? Is her nausea and lack of appetite from the chemo or is the cancer up to something? We try to get her to try this smoothie or this type of mashed potato, anything to make her feel better and more comfortable.

 

Caregivers put someone else before himself or herself and understand the fragility of life and time. In doing so, I have learned…

· There are trivial things in life and important things in life.

· You should never put things off. (You want that pair of shoes? Go buy them before your size is gone…okay that is a bit trivial…maybe more important things like traveling, saying I love you, going after your dreams, carpe diem).

· Always be honest (my mom has always).

· Never do anything that dulls your uniqueness or prohibits you from being yourself or doing what you love.

 

One of the beautiful pieces to being a caregiver is I am always there for my mom. No matter how far away I am she will always get a phone call or text asking how she is. I have always been her sidekick, but now that I am home and really taking care of her, I am sort of like her pit bull or attack baby bear. Would I cut someone off for the closest parking spot if my mom was too tired to walk far? Obviously. Would I fight someone in the supermarket if there were only one bottle left of her favorite smoothie? Definitely.

It is just a day in the life of a caregiver.

California…Buy The Insurance

Come and listen to a story
about a man named Jed
A poor mountaineer, barely
kept his family fed,
Then one day he was shooting
at some food,
And up through the ground
came a bubbling crude.

Oil that is, black gold, Texas tea.

Well the first thing you know
old Jed’s a millionaire,
Kinfolk said Jed move away
from there
Said Californy is the place you
ought to be
So they loaded up the truck
and moved to Beverly

Hills, that is.
Swimming pools, movie stars.

Sound familiar? It’s The Ballard of Jed Clampett from the tv show, The Beverly Hillbillies! I know you were singing it. 

I kept thinking about this song while I was visiting California last week. Mark and I took Max out to Cali to look at colleges. We started our adventure in Los Angeles, and worked our way up to San Francisco. It was an exciting trip, but one I almost didn’t make.

Two weeks before we were to depart for our journey, I received my new chemotherapy. I am always nervous about beginning a new chemotherapy, but this time, even more so. Mark usually accompanies me to my infusions, but was traveling for business, and could not bring me this time. My brother Mark took me. I am not sure if not having Mark with me, my husband, not my brother, was the reason for this nervousness. I believe it was most likely going over all the awful side effects that can happen during the infusion, with my oncology nurse. Ativan to the rescue…..I love that little white pill. I became more relaxed.

Even before I began the new chemo, I was feeling very tired, weak and had little to no appetite due to the cancer spreading. After chemo, these symptoms became worse. Thanks, chemo! A few days before our departure date, I told Mark I didn’t think I would be able to make the trip. He told me to wait another day to see how I would feel. Thankfully, I finally started to feel stronger and less tired. 

Our trip was a success. I wasn’t able to do the college campus tours with Mark and Max due to all the walking, but Mark drove me around the campuses so I could get a feel for what they were like. I was also able to do some some sightseeing, as long as it didn’t involve a lot of walking. More important, Max enjoyed his time in California, and made some decisions about the colleges he was interested in.

I love to travel, but having a terminal illness can be tricky planning a vacation. One never knows how they will feel at the time of travel. Last summer my family and I had to cancel a vacation to Paris and London due to my declining health. Thankfully, we purchased travel insurance, and were reimbursed for our airfare and hotels (after a lengthy process). In fact, we purchase travel insurance for every trip we plan. It gives us piece of mind. 

With this piece of mind, we will continue to travel. I recently enjoyed a wonderful trip with Michaela to Las Vegas, a wonderful trip with Max and Mark to California, and next up, the four of us on a Mediterranean cruise. I wonder what adventure will be next? Of course, travel insurance will be included.

Just Like The Weather

New England weather is fickle. One day it might be a sunny, warm 70 degrees, the next day a rainy, cold 45 degrees, or even snow. We have had some beautiful warm days recently, and now we are told to expect snow, not once, but twice this week. This is April…..enough!

Just like New England weather, metastatic breast cancer is fickle. If you are lucky to find a treatment that is working for you, you might be able to go a long time without the cancer progressing. Many times this isn’t the case. Breast cancer, and cancer in general, changes its mind frequently. 

I know this personally. It’s getting hard to keep track of the different chemotherapies I have been on. Cancer is smart, and many times outsmarts your cancer treatments by adapting to its environment and finding weaknesses in it.

The past few weeks I have been feeling awful. My face has been flushed, I have lost weight, I have little to no appetite, I have been tired and weak, light headed and suffering from migraines. I had scans last week, and now I know why I have been feeling the way I am.

Unfortunately, the cancer is progressing, especially in the liver. Fickle cancer has decided not to be stable. I am experiencing many emotions about this current news, sad, mad and scared. 

Dr. M informed Mark and I we need to go in another direction in regards to treatment. It’s time to go back on hard core chemotherapy. I need to begin right away, and will start on Monday. 

While I am hoping we do not get much snow this week, I am also hoping this new chemo is effective and attacks the cancer in a major way. 

Fickle you, cancer!