Yesterday was a very exhausting day and I slept most of it away. Rea and Shuie came last night and stayed over and so I have company an Aaron and Steph will come later. I am very very tired and have no appetite but am trying to get what I can down and sleep a much as possible.
The day began a little nerve wracking when I stood up and my blood pressure dropped again and my pulse went to 54 and I thought, “No way, Urgent Care again!” But I laid back down, ate some salty things, drank a lot and went back to sleep. Better this time upon arising.
After a very restful day at home yesterday, I accomplished so much. I was able to do most of my school work, shop on-line for my new grandchild, and confer with Stephanie about a wrap she needs for the wedding. I also got to spend 1/2 hour with my children at school after they heard their new book about Giraffe’s who can’t dance on debbireads. I took long naps in between and had a really good day.
I have a lot planned for today. At 7:30 this morning I am attempting to go to a circumcision of a new grandson of my friend Gail. Gail goes to Dr. appointments with me and makes the best Tomato soup and calls constantly to be of assistance. I am going to try to walk the 2 blocks to the synagogue to celebrate this special time with her. At 9:30, my cousin Sam Milkman is coming for a visit and then I hope to sleep for awhile. My brother-in-law, Scott is coming to keep me company for the afternoon and then Aaron and Steph will be in tonight overnight and for tomorrow. And since it is Friday, and the Sabbath tonight, Jan comes home from work early!
I know what I am doing tomorrow already…….SLEEP.
Please say some extra prayers for my sister, Ellen today. She has a touch a pneumonia and has returned to the hospital. She is an icon to respect and admire for all that she has endured to just be alive. Thanks.
After having to get up during the night to take yet another anti-nausea pill, I am having a very slow start. I am still nauseous and dizzy so Just taking it a little at a time. I am so hoping things improve since this is the Thursday after Tuesday Chemo which will be the same as Aaron’s wedding. This is so important to me and I will do anything I have to to be there and be a part of. So, I think I am off to bed again and see how things develop.
I am half way there!!!!! I took myself to the hospital and did all the preliminaries including meeting with the doctor by myself yesterday. I must admit I will a little nervous and prayed hard that I had the strength and it happened. Jan showed up after his meetings during the chemo to take me home.
Dr Bajorin has a very dry sense of humor and it took me awhile to catch on to him. My initial reaction to him was a cold character but think of what he does everyday. So I said to him, “We have now killed the white cells, my immune system, and red cells, what do we kill next?” He said, “How about the turmor?” and smiled. AHA, I forgot that’s what we are really after since taking it one day at a time I was just dealing with what is right in front of my nose. And it has been a lot.
All of the numbers were in the right place yesterday and so it was no wonder that I felt enough like myself to accomplish what I did. I sailed through the chemo although I was very tired and came home and ate CHINESE FOOD!!!! This is a miracle. For someone eating yogurt, applesauce, chicken soup and half sandwiches here and there that Lo mein, fried rice, AND dumpling were amazing.
I am up and ready to go again. Today I will get my school work done and head over to Sloan this afternoon for a white blood cell booster shot. I am so looking forward to talking with my kids at school too. Between the holiday and me not feeling well, it has been awhile. www.debbireads.com has been such a hit that my sister gets on to hear the stories and my longtime, dear friend, Susan Polansky sent me a children’s book from Pittsburgh that she loved about Andy Warhol to add to the list. It’s a wonderful book and I probably would not have found it. I think it very important to introduce young children to many art forms and artists.
Howard Nadel, the man I knew who contacted me when he read the blog, is having his kidney surgery today. Please add a little prayer to your list today for him. You all helped my sister through her surgery and you help me daily. When we work together our power is amazing! Wishing you all a wonderful, healthy day.
Today we have a later appointment with the doctor and an afternoon chemo treatment. Jan has meetings until at least 2:00 so I will take myself to the preliminary blood work and doctor appointment and he will meet me for the treatment.
I have been very tired all weekend and accomplished nothing school-wise. I have also had a few panic attacks and have had to recoup from those. My precious husband is so weary watching me and I am sure worn out.
But, the good thing is that after today we are half way through the planned chemo and next week we can take a look to see how much progress we are making. I am certain that once we have an idea of what is happening, I will be able to gather up the strength to continue foraging through the next 3 rounds. The knock downs in between have really taken the wind out of my sails.
I realize that I have asked for so much from all of you for over 2 months now. The novelty has worn off and Prayers are even more important now. Please use every bit of strength that you have to help us through these next few months. It is a lot to ask but very much needed. Wishing you health and serenity.
Jan and I are just being here in NY. We had a quiet day yesterday although we did debate another visit to Urgent Care due to shortness of breath but decided it might be anxiety. Talked with the Doctors and made it through.
Today we plan another quiet day, walking, reading, and resting. Getting primed for another round tomorrow.
After a whirlwind Friday in the hospital, Saturday was a rest filled, quiet day. Basically I slept and took a walk down to the pier. Planning the same for today to get ready for another chemo treatment on Tuesday. Jan and I are just enjoying each other’s company and taking it easy.
As you can read on Jan’s blog, we were very busy yesterday at Sloan. OK I went down again but still not out. This is very frustrating. I woke up and felt not necessarily shortness of breath but a little uneasy while speaking. After a shower, I was very lightheaded and continued to feel the necessity to lie down. I put a call into Dr. Bajorin who insisted I show up at Urgent Care. Aaron had just arrived so he cabbed it over with me and when I got there my bed was read as was my gown. Jan arrived a few minutes later.
It seemed to take forever (5hours) to get these two units of blood into me and of course many scary thoughts were going through my mind but by 10:00 PM, they finally let me come home, take my meds, and sleep in my own bed.
I arrived to a beautifully cooked dinner by a close friend and extras from Aaron and Stephanie who served us. I actually ate more at that dinner than all week.
Today I still feel uncomfortable but am drinking to ensure hydration, eating as much as possible, and enjoying Aaron and Steph. Today is her first dress fitting for the wedding and of course I am unable to be with her. But I know, if I take care of myself, I will be at the wedding and that is what is driving me right now.
The sun is shining and I will get to go for a walk with my family today. I know I have been asking for help for 2 months now, but the path continues to pop me speed bumps and pot holes. Please continue praying hard. After Tuesday’s treatment I am half way there and we will actually know what is happening soon. PRAY HARD. Love, Debbi
What started out as a “routine” day became anything but as Debbi’s energy level faded just after I left for work. Complaining of shortness of breath, Debbi placed a call to Dr. Bajorin’s office. Shortly after arriving at my desk, Debbi called and said that Dr. Bajorin personally returned her call, listened to her symptoms and requested her to report to Urgent Care right away. Aaron was just arriving so he accompanied Debbi on the crosstown trip while I rode the train uptown.
In short order, Debbi was given a bed and vital signs were taken. When the blood test showed a hemoglobin count of 8.6 (normal range 11.7-13.8 gm/dl), the attending physician asked for Debbi’s blood pressure to be repeated in both a prone and in a standing position. When lying down her blood pressure was 110/86 but when standing her blood pressure was only 89/68. To be safe, Debbi was sent for a cat scan of her lungs and an ultrasound on the back of her right leg as she felt some pain there.
Both scans were clear but Dr. Bajorin recommended that Debbi receive a transfusion of 2 units of whole blood. If I thought that the double checks performed in order to verify the correctness of the chemo drugs were “thorough”, then upon witnessing the validation procedure in order to administer blood from another person, I would have to have to redefine that term.
First, the doctor ordering the blood is not told the blood type of the patient. This measure prevents a doctor for ordering a unit of type X blood. Instead, the doctor simply orders one unit of blood, the lab sends someone to draw a vial which the lab cross matches with donor blood. The bag of donor blood has identifying tags on it and a paper trail is begun showing the patient name, tag number from the blood, patient code number, patient blood type with Rh factor, product code, product expiration date (after which the blood may not be used for a transfusion), and results of the crossmatch… as well as the patient birthday which as I have written before, serves as the social security number identifier in today’s times where revealing the ssn so frequently is a potential invasion of privacy. Again, two nurses check the patients id band, ask the name, spelling of the name, and the birthdate. They double check everything including the paper trail and the identifiers on the bag of blood. When they are satisfied that all has been verified, the transfusion begins.
The purpose of the transfusion is to boost Debbi’s red blood cells and hemoglobin count. At the chemo session this past Tuesday, Debbi received a shot of Darbepoetin for this exact purpose. The Darbepoetin is a longer acting drug so it seems the transfusion of 2 units of whole blood is meant to boost the count until the Darbepoetin gets up to speed.
Our nurse Lori, spoke to us about the importance of mental health as well as physical health. She emphasized the importance of going for frequent walks, breathing fresh air, and not simply staying in the apartment all day. So, to our friends who have taken Debbi out while I am at work, I can only say thank you and pray you continue.
We will monitor Debbi’s energy levels in the next few days and hopefully be able to report that the transfusions were beneficial.
It is a new day and a sunny beautiful one at that. The new medication has to go. I slept all day from it and so I will go back to the lower dosage during the day. I am awake with a little energy this morning which I will use to wash my hair. I am having some shortness of breath today which I will have to check out with the doctor later but otherwise, doing OK.
Aaron and Stephanie are due for the day and overnight so I will have company and will hear all about the wedding plans. I am so looking forward to being able to focus on something else besides just what is happening here in the apartment. It will be great to see them.
Plan to do more recording of DebbiReads this weekend and paper work for school. Otherwise, a quiet Memorial day weekend. A far cry from being at the beach in Cape Cod but I know this is where I belong for today.