3/31/16 – Day -7
Chemotherapy started today, I didn’t know how to feel. I was excited but nervous. To think I can be excited for Chemotherapy is crazy but this is my chance to hault the progression of my MS or even have a chance to regain lost ability. Day 1 consists of one type of chemo called Carmustine. My daughter who is a PA at Columbia specializing in stem cell transplants told me it can cause certain side effects such as fast heart rate,palpitations, and flushing; she has seen it in her patients many times. It was a two hour infusion and the first half went smooth but when they sped up the infusion rate I began to feel most of the side effects she told me about. Once the infusion ended and the anti-anxiety pill kicked in I began to feel better. I was given a sleeping pill and had a good night sleep.
*Before the Carumstine I was given premedications: Zofran an anti-nausea medication as well as a steroid which helps with the nausea and to prevent adverse reactions.
4/1/16 – Day -6
STEROIDS – From the steroids yesterday I woke up at 4:30AM but am feeling good. I have a lot of energy. Today consists of 2 types of chemo; Etoposide & Cytarabine. I felt good all day and even better then my baseline. My daughter told me this was called “Steroid-Induced-Mania”.
Below is a video of me and my family making the best of the day and enjoying each other’s time.
My daughter Alexx will be helping me with the blogging from now on. I’m very tired and she will take over until I am feeling stronger. All of the love and support from home is helping me push through.
4/2/16 – Day -5
Not too much happened today. I got my 2nd day of Cytarabine and Etoposide. No issues other than feeling tired. Today is Shabbat so the hospital was empty. They even turned off the TVs! Thank god for my IPAD and Netflix 🙂
This is Ayala. She’s the head nurse on the Hematology/Oncology Unit. She’s hanging my chemotherapy.
Today was my 3rd day of Cytarabine/Etoposide. It went well. I met with the nutritionist today and told her how disappointed I was with the food. She told me that because I was requesting a Gluten free diet it was essentially a strict Celiac diet and came from the airlines! How bizarre-I guess it’s because the entire kitchen is cross contaminated with gluten. So I removed the Celiac component, and told her I’d like to eat chicken, some meat, potatoes, bread and veggies. The food selection is also more limited than the average patient because I am on a Neutropenic Diet. This means that everything is well cooked and has the lowest risk of contamination. Then she showed Alexx a pantry on the floor that has Ensure and ice cream. The coffee Ensure is actually quite good.
The physical therapist also came to see me. We walked a few laps around the room. There isn’t really anywhere to go. I am definitely starting to feel weaker. I also used the stretch bands to maintain flexibility.
Alexx and Ric came to see me in the morning and then went to Tel Aviv for the day. I’m glad they got to spend a few hours on the beach. All I wanted to do was sleep all day anyway.
Alexx and Ric at the beach
When they came back in the evening, Alexx reviewed my chart and noticed that my blood pressure was higher than usual. It was 160/105, it’s usually 100/60. She told me it’s probably because I was continuous IV Fluid and had also gotten steroids which can cause fluid retention. She was concerned that I was retaining fluids and asked the nurse to check my weight. I had gained 12 lbs! Alexx called the doctor and he agreed to give me a diuretic (Lasix) to help me pee out the retained fluid. Since I’m having such a hard time getting to the bathroom as it is, and the combination of the fluids and diuretics only are making me pee more, she asked the nurse to put in a Foley catheter.
My daughter brought me dinner-broccoli,peas, and Sweet potato that she prepared at home. It tasted so good! I also had an orange; I’m allowed to have fresh fruits that have a thick peel. But then I felt very bloated. I think maybe part of it was that I ate too much, but also my tummy was very distended and full of fluid. This was prior to the catheter going in.
I went to go to the bathroom and thought I was going to burp but vomited all over the floor. Thankfully my family was right outside because they called the nurses to clean it up and then Alexx helped me shower.
After vomiting I felt a lot better. I told my family to go home, I took my sleeping pill and slept soundly.
4/4/16 Day -3
The diuretic worked; I lost about 6lbs overnight. My blood pressure was back to 100/70. My abdomen is less distended and I feel better.
Today I received the last dose of Cytarabine and Etoposide. My labs today showed that I am now Neutropenic, meaning my Absolute Neutrophil Count (ANC) is less than 1000. It was 850 today. This means that I am at an increased risk for infections. My hbg was 10.6 and platelets are 100; my cell counts are starting to drop from the chemotherapy and eventually I will require blood and platelet transfusions.
Today I received the first dose of ATG. This is a targeted antibody that attacts T Cells. My daughter has given this medication at her hospital and says it’s tough and can cause infusion reactions. She prepared me for potential side effects and promised that she and her father would be by my side the whole time. They gave me Tylenol, Phenegren (similar to Benadryl), and Steroids as premedications. The first 15 minutes went okay but then I felt light-headed, nauseous, palpitations and a tightness in my chest. I pressed the call bell to alert the nurse. My blood pressure dropped to 90/50 and my heart rate was slightly elevated. At first my oxygen was good (95-99%) but then it dropped to 89-92%. The nurse stopped the infusion, placed me on oxygen, and went to get the head doctor. I felt sick and scared but Alexx held my hand and told me that this a common reaction. The doctor examined me and rechecked my vitals: my blood pressure and oxygen were better. They gave me IV fluid to bring up my blood pressure and restarted the ATG at a much slower infusion rate. I’ve been feeling better since then, just tired with chills and mild bone aches.
Napping with oxygen and DMB.
4/5/16 Day -2
Last day of chemotherapy! Today I got Melphalan, a new type of chemo for me. They had me suck on ice cubes before and during the infusion because it helps to decrease the toxicity to the lining of the mouth (oral mucosa). This serves to decrease the development of mouth ulcers.
Then I’m getting 2 more bags of ATG. Since they slowed the infusion rate the flu like symptoms have gone away. I’ve been sleeping most of the day because the pre-medication Phenegren makes me really tired. I really noticed the weakness and fatigue setting in today. I haven’t been able to walk or do physical therapy. I’m hoping that as the chemotherapy leaves my system I will start to feel better.
I asked the kids to buy me stones and glass jars so I can move them from to other to visualize the passing of time.
Alexx and Ric went out and brought me back a white board to hang on the wall. Every day Alexx is going to update where I am in my treatment course, the plan for the day, and an inspirational quote. She also purchased colored pencils and a sketch pad so I can draw when I’m feeling better.
The nurses and staff have been very attentive. Ric stayed overnight with me because he didn’t want to leave my side. Today a staff member came in and gave me a face massage, I could get used to that!
I’m happy that the chemotherapy is almost done and looking forward to my rest day. I’ve really appreciated all of the love and support on social media. It helps me to get through the day (and night when I can’t sleep).