Share. Connect. Love.

What's going on with MaryAnn

Hopefully this will help get information out to everyone more effectively than we have been able to do! As you all know mom has been going in an out of congestive heart f[...] read more

Latest journal entry

Posted 2017-12-01T02:37:09Z

November 30, 2017

Happy Thanksgiving Family and Friends!!!

It has been a long time since I updated this site and I apologize. No news is good news though. I wanted to share with you how Mom and Dad are doing.

My mom has been doing really well over the last couple of months I am happy and relieved to report! She has not needed to be hospitalized for heart failure in a while. I think the medications she is on right now seem to be the right combination. We took her to a heart failure specialist out of Newark Beth Israel who came highly recommended- Dr. Zucker. He's a quirky little guy but one can tell how bright he is from the moment you meet him. He spent a good hour with my mom and dad during our first meeting getting to know her. He admitted that while she is a rather challenging case she is still manageable. Also, after the last episode of heart failure back in March, her cardiologist and nephrologist both agree that she needs to be seen by them on a regular basis. So every six weeks we go to the cardiologist and every six weeks we go to the nephrologist. The cycle is staggered between the two so she sees one of them every three weeks. This made me feel a whole lot better. She needs to be monitored very carefully and her medications tweaked every so often to ensure that they work for her optimally. We were told that the heart would take a good year to "reshape" and that it would also therefore take that long for her to feel better. Well, we are just about coming to the one year anniversary and they were right- it seems she is finally feeling a bit better. She is still not the same as she was prior to all of this but we are pretty happy with how she has progressed.

On to the cancer. My mom remains on two drugs for the treatment and management of her cancer. They are Ibrance (palbociclid) and Femara (no idea the generic name). The Femara is easily tolerated but the Ibrance on the other hand is a bit tougher on her system. Ideally a patient should be on a cycle of Ibrance that is three weeks on and one week off. My mom has not been able to tolerate more than 2 weeks straight on the drug. It drops her platelet count (we need these to help our blood clot when we get hurt), drops her white count (we need these cells to help us fight infection), and it drops her hemoglobin (these parts of our red blood cells carry oxygen to our organs and help us keep our energy level up- necessary to help prevent shortness of breath too). So the oncologist has her on her own little schedule and gives her injections to raise the white count and then another injection to raise her red count. So far it seems to be working! She had a CT scan of her chest last month and everything looked good :)

The medications make my mom a little dizzy and she loses her balance so we are working on ways to try to reduce this. Of course the worry is that she will fall and get hurt (and she is on a bunch of blood thinners and has a low platelet count). She had a bit of a fall a couple of weeks ago but thankfully the only thing she suffered was an ugly bruise on her face and leg. I'm happy to say that I made her a roller bottle filled with essential oils specifically for bruising and I am telling you it helped heal that sucker up!!! My snake oils work!!!

God bless my dad- he has been wonderful as you all know. He is the one who is there with her and witnesses these scarey events (like falling, and having trouble breathing). He makes sure that there is nothing for her to worry about everyday. He sets her pills up for her every week (this is a part time job), takes her to all of her doctor appointments, cooks, cleans, food shops, even orders clothes for her online!!!!  He's the bomb!!!

How far we have come in the last year and how different things are this year than they were last year. My mom was in the hospital last year from Thanksgiving through Christmas. We missed spending the holidays with my Uncle and cousins (although we made up for it in January!) This year we (all 38 of us plus 2 for dessert) went to Emily and Dave's house. My mom and dad went a couple of days early to help Emily get ready and really just to give support to them because they really had it all under control to be honest. Had it been at my house my mother would not have been at peace as I wait until the last minute for most things. Let's face it mom- you would have needed a Xanax at my house. Mine and Gina's approach to getting ready for entertaining are a bit different. We sort of fly by the seat of our pants. Everyday. Emily and Dave are a well oiled machine together. So anyhoo... we just had a great time with everyone. We all really enjoyed seeing one another and spending time together. And for all my cousins who got to see me in my scrubs- I NEVER GOT CALLED IN!!! That's a first in the history of our department!!

We are all looking forward to a wonderful Christmas as well. In fact my mom and I are going to try to get a little shopping in tomorrow. I hope all of you are well. I know that each of you is going through your own challenges and require prayers of your own. My mom is certainly not the only one who is fighting a battle. Please know that we keep all of you in our thoughts and prayers and are so thankful for each and every one of you!

Love, Steph xoxo


Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted