Having a tough go of it today. Woke up quite nauseous and very tired. So I am giving in and resting. Jan just did he grocery shopping so I have food and juice for the day and I am going back to bed. Hope all of you are well and enjoying your day.
I have received many e-mails that other friends are using Debbi Reads with their kids and really enjoying it. 15 books arrived from the Scholastic Store in NYC so as soon as Jan has the time and I am able, more books will be posted.
This morning I am taking it slowly. As you read last night, this treatment was a little more difficult. This morning I have some energy but not the same as the past. So, there are no deadlines I must meet and I am going to just rest. That is a new one that I have had to learn during this process. I’m not good at it but working on it.
Two more books arrived yesterday for my kids so I will at least try get them taped so they will now have 5 to chooses from. I also hope to SCYPE with them later today. See how long that rest idea lasted?
Wishing all of you a beautiful, grateful sunny day. Your prayers are working and so appreciate them all.
This chemo treatment was much more difficult than the ones in the past. I know part of it is the anxiety level is increasing as we grow nearer to the scans. We ran into a couple of glitches with the medications also today. And my precious son, Aaron, was with us today and watched me fall apart a few times.
The iron is not helping the red blood cell counts and so in order to avoid transfusion, I was give a shot today. Last week Dr. Bajorin told me he didn’t want to give me the shot because one of the side effects is cardiac arrest!!!! HELLO! This week I had to take that shot and will pray it will JUST increase my red cells. I find it so frustrating that along with the chemo being so toxic that each visit more medications or moderations have to be made. The nurses assure me that it is not just me, this is the chemo process. For someone who took no medication prior to diagnosis, this world of medication is just too much to accept.
On the good note, I never thought I would say this, but I gained a pound this week. This is good because I lost 10 pounds quickly and had difficulty eating (no interest). But Jan has brought bagels home a couple of times this week and they added that 1 pound back quickly.
So tonight I will rest and enjoy my husband and son. I will answer as many e-mails as possible and prepare for a reading and scype session with my little ones tomorrow.
Thank you so much for your prayers and strength. I know I cannot do this alone and I need all the support you are sending my way in your own way.
Today is ROUND#3, first treatment and the first time I am switched to Tuesday. I am thrilled that I made it through these last 2 weeks with no fever and overall less fatigue. Sometimes, I even felt like myself! For these things, I am so grateful.
Aaron has completed his Law finals and has come to NY/NJ to work on wedding plans with Stephanie. But today he insists that he accompany us to chemo. It is amazing that Josh and Shira have done it and Rea would if she could ( I won’t let her near the hospital pregnant). We are so fortunate to have such caring and involved children. They each call for a few minutes every day just to check in and share what’s happening in their lives and keeping me in their lives. Stephanie usually begins her day by IMing me while I write the blog. These wonderful people are the reason I am fighting to beat this disease so I can continue to watch them grow and be a part of their future.
The first story on www.debbireads.com went up yesterday. It is not professionally done but good enough for the children to enjoy. My class loved hearing the story and then they scyped in to tell me what they thought of the story. It is exactly the interaction I was hoping for. They still think I am a part of their everyday classroom and it is the best medicine for me to see them and listen to them talk. I had a visitor here when the kids scyped me and she could not get over how wonderful the process was and to see the kids so happy.
So now we pack up the electric blanket (with a new duvet cover to keep it clean), earplugs so I can sleep while other patient’s TVs are playing, cell phones and chargers, lap tops, knitting, and sippy top water, and get ready for our day at Sloan. We have it down to a system by tote bag here. Chemo bag, God forbid hospital bag, etc. It is amazing how our lives have changed so quickly and how we have adjusted at the same rate.
PRAY HARD that the meds are working.
This is the last day before the next round of chemo. Although I am uncomfortable in many ways, I feel a little more like myself and can do much more. Tomorrow begins round #3. It should be interesting to see how the energy levels work this time since I am trying to gage how I am going to be able to participate in Aaron’s wedding in 6 weeks.
I must admit that my anxiety level is much higher now since I will have my first body scans after this round of treatment. I am praying that these medications are working and that the disease has been reduced.
Our first recording of www.debbireads.com went up this morning for my children at school. We have some perfecting to do but at least now the children can see me, hear and see the story, and the mouth matches the words. We plan to record at least 10 books so the children have a choice in the literacy area to hear a story and read along.
It is a gorgeous, sunny day in NYC. and I am grateful to be able to feel the heat on my face and celebrate another day of my life.
I awoke to a magnificent sunny day in NYC and all I could say was, “Thank you God for another day and sunny one on top of that!” I am so appreciative of every moment but the view of the Hudson this morning is over and above.
The meds seem to be straightening out and although the pain in the shoulder increases, the pain in the kidney area has decreased. I will switch Chemo days to Tuesdays this week and after this round, I am half way there (6 total treatments) and we can do the scans to see what is happening. I am so looking forward to finding out if the chemo is working, on the other hand………..very anxious. I know I am in the best of care in the best hospital in the country and I chose to trust these folks with my life. TRUST has to go along with the words FAITH and BELIEF, This is where meditation and prayer are very very important. Sometimes FEAR overtakes all of those other words and I must take a few steps back and be grateful I am where I am today, right now.
I am also so fortunate that I work as a teacher for the State of New Jersey (I commute backwards from the city). My health insurance has covered almost everything for my treatment which can cost about $30,000 a month!!!!!! We have been told, that people without “proper” health insurance first cannot get in to many hospitals, or that they must leave a deposit of $100,000-$150,000 before they can be treated!!!!! Also, if a child from a foreign country comes here for treatment, they need a deposit of $350,000 because if they don’t pay, there is no way the hospital can collect once they leave the country! Isn’t this amazing??? I can understand where the hospitals are coming from since they do need to continue running but where does a “normal” person come up with that kind of money, the worry, and deal with the disease also? I know that if I hit the lottery now, my choices of how to spend it are a little different than they would have a year ago. Priorities change and I know that so much money is needed to keep people just living let alone living with material things.
Jan is planning our first book filming this weekend for my kids and to get me out of the apartment. Today we are expecting a few people to come and visit for awhile. I do love having people around. Hope you all enjoy this magnificent day in good health.
It’s just a quiet, rainy day here in NY and I am taking it easy. I plan to have lunch here with 2 friends and otherwise knit or read or rest. I am thrilled that this off-chemo week has been so much better than the last round that I am taking it easy and not pressing my luck. Friends have been so kind to offer to take us out for dinner or just out in general. I am quite content eating here (as much as I am eating) and knowing everything is cooked just so and I am concerned about exposure to too many people. Maybe I am being too careful but I am trying to do what works.
My sister seems to be doing well after surgery and when I speak with her, she will want me to relay her gratitude for those who shared Prayers for her well-being. I am certain that those prayers are what gave her that extra push to get through this tough time.
I am so grateful for so many things today which would take too long to share. Somehow, there is a reason for everything in this world and if I just trust and believe, the right answers will come.
Thank you to all those who said extra prayers for my sister, Ellen, yesterday. I have no idea how she pulls through so much medically except that there has to be a higher strength and energy helping her along with her belief that all will be OK. They found 2 growths in the lung and so far they are hoping they are benign. This is a woman to be admired for what she endures medically daily and always with hope and a positive attitude. She is an example for us all.
I on the other hand worried, prayed, begged, paced, and cried most of the day. This disease is so overwhelming. It as very difficult to even stay in the moment yesterday let alone the day. What an emotional rollercoaster.
Around 2:00 yesterday, I got a wonderful phone call. Tom, or computer support support at school, was in my classroom and the children wanted to SCYPE me. And so I went to the computer and answered their call. They are so like deer frozen in the headlights when they see me on the computer and hear my voice. The difficulty with SCYPE is that the mouth is off by a few seconds and so we are going to have to tape stories and put them on www.debbireads.com so they will be able to follow my mouth patterns while I annunciate the words. This is very important for early language learners. But thank goodness for the SKYPE option so that they can see me and I don’t feel so out of the loop. We will have a 1-2 children at a time SKYPE so that they will feel they can have a normal conversation not just sit in a group and not know when to talk.
I did get to Barnes and Nobles again yesterday via Dr. Janice Bennett who was excused from jury duty and decided to help me get there. We made the walk. I chose some books for the children but I needed to cab it home. The lack of reliability on how the medications work makes it difficulty to go out and plan anything. I keep trying, many times I am frustrated that I cannot do the minimum (in my head), and sometimes I am downright angry. I have to remind myself that with prayer and hope and the doctors that this is going to be a year I will always want to remember and always wish to forget.
Today is a very serious day for me. My sister, Ellen, has never been a very well person. She has been battling all types of cancer for over 18 years and today she will face another surgery. She is always optimistic and believes she will recover and she does . That’s the emotional part of recovery. Please PRAY HARD and include her in your prayers today. She is an inspiration to us all and a major support system for me during this time. (Her Hebrew Name is Sarah Esther bat Chana Liba)
I was so fortunate to have the best medicine yesterday visiting my children. I was unable to nap and literally had to knock myself out around 9PM to get some rest. We are told that recovery is not just in the medicines the doctors provide but in our hopes and beliefs. Seeing my children and their excitement and being able to share an hour with them was the best donation to my recovery. I know my purpose in this world and I have had a major effect on many, many children and their families. And they have made me a better person because they are or have been in my life.
My wonderful husband, Jan, knew just what I needed yesterday and as always, in his quiet way, he came through through his actions. Today he offered me another gift, He purchased a website for me called www.debbireads.com so that he can tape me reading to the children and they can use the website over and over (in addition to the direct pod casting).
I am going to Barnes and Nobles either with some help or by cab today to acquire some quality books for my kids. I am very particular about what we read and I must read the story first to make sure it is appropriate. It is very difficult to choose a book on the internet since I cannot get the feel of the experience without that full touch.
Thank you to all of the people who made yesterday possible and for those who are there daily with their notes and calls. You are my strength and energy.
I have been losing ground in the emotional battle of just feeling tired and sick all the time. Jan, in his infinite wisdom, suggested that since the weather was gorgeous today, he would take a few hours off this afternoon and take me to school to see my children. I must admit I was not sure I was going to be able to pull it off but I was willing to try.
So off we went to Passaic and I was able to visit with some of my colleagues even though I had to remind them no hugs or kisses. It was great to see them. Then the children were brought out to the slide area to sit down before I came in to sit in a chair. I greeted each child with their name in sign and they greeted me back. I read them their favorite story and they loved it. And it took every bit of self-control on their part not to throw themselves into my arms but were able to sit and talk to me at my feet if they wanted extra attention.
They do understand that I cannot sleep in the classroom and that we will talk on the computer a few times a week. Jan was able to get the camera up and running in no time. And so, I was feeling quite happy all day. I need to say a special thank-you to Sue Simbol for getting more paper work ready for me and sharing her chair and books. And to Dr. Malleo, head of Early Childhood, for not only making this visit and the computer visit happen but also for taking time out of her busy schedule to join the fun.
Rea came to spend the late afternoon and early evening with me and so I really had a very full day.