Today is the day that Henri will finally color and cut my hair. I thought he would have to come to me here in the city but I feel well enough for Jan to take me to Caldwell to his salon. It will be easier for Henri to work his magic there. I haven’t done anything to my hair since my diagnosis since I really wasn’t sure I would have hair at this time. I am so fortunate that it has only thinned but I had such thick hair prior to chemo that it is not really noticeable. For this I am very grateful. A special thanks goes to my sister-in-law, Renee, for making this happen for me.
It is so hot and mostly I have gone out for early morning walks and then slept the days away. I am trying to save as much energy as possible before the kids arrive tomorrow and the pre-wedding stuff begins. I am so grateful that I am doing well enough to enjoy this special time.
So for right now, I will shower and nap before we leave for Caldwell. Have a beautiful, sunny day.
I am so appreciative for how I am feeling right now. I spent the afternoon with Renee and Bonnie, and then took myself over to Sloan for a rash check. I hailed my own cab back to the West Side to the drug store, had my prescription filled and walked home. And I watched a movie with Jan. Thank goodness for the energy and well-being that allowed me to accomplish these tasks.
My very long time friend from Turkey, Ilona Kornfilt, is here in NYC and coming to the wedding. Today, I will spend some time with her and her her lovely daughter Sera. We were so fortunate to spend 4 days in Istanbul with them last summer and this summer we will celebrate again together. I pray we will only have happy occasions to share in the future.
Without the chemo, I feel more like myself. This makes me very happy. The anxiety of the next step is looming and I am more emotional. I still do not know what that step will be but I do know that I really do not want to go for the last two chemo treatments and feel horrific for days and days. I was reminded by a well respected friend that I am so far ahead of where I was when I walked into Sloan in March. I have a treatment plan, I am 2/3 through the chemo part. The cancer has not only been halted but turned back 25%, and we know that the treatment is working. I must remind myself of this each minute and not take it for granted. Each time I feel a pain in the left shoulder, fear does set in. The mantra: “Trust that the Doctors know what they are doing”. And so for today, I will enjoy and celebrate the ability to do more things and enjoy more people and join the countdown with my son to his wedding. (He calls each morning to remind me how close we are). I am so appreciative.
Jan called around 4:00 yesterday and asked me out on a date to the movies. I have not been to the movies in 5 months and decided to try it. We cabbed over the 5 blocks and I even got to browse the Gap sale next store. It was difficult for me to sit through “GET SMART” but I even walked home in the night air slowly. I must admit I was so thrilled and the air felt so good. The pain in my shoulder was huge upon return but I was due for meds and when they kicked it, Voila! A perfect date.
I know Jan has tried so hard to be everything to everyone in this family and this disease and the economy has put tremendous pressure on him along with his own diabetic care. He is doing so so much and never ever complains. How thoughtful was he to ask me out to the movies and encourage me to try? I couldn’t disappoint him by refusing to try because I was afraiid and in doing so, I made both of us proud. He is amazing.
Today, I am expecting my sister-in-law, Renee and a special support, Bonnie Fertel for a visit. This should be so much fun since there is so much to share with these two women (a long history) and they have both been tremendous emotional support for me during this journey. I know who to call when I get scared.
And so, it is one week tonight for Aaron’s wedding and I know that I am going to make it and be able to celebrate with them to the best of my present ability. After all, I went out on date last night and it was successful.
Wishing you health and serenity today. Enjoy the sunshine.
Jan was very busy at work and had an appointment in the evening so I was home alone for a very long time yesterday. This is not good because I had too much time to think. My mind went to places I try to avoid and by the time Jan came home, I was hysterical. I must admit that fear is such a powerful thing and when it is let in the door it consumes you. I was consumed last night.
I really try not to feel sorry for myself since there are others who have it much more difficult than I do, but yesterday was my day. And so, it is a new day and my mind need some other stimulation besides just me. I am going to try to walk around my building a few times today and see what the world has to offer outside this building.
For now, I am just grateful for the light of a new day and a chance to do something else. Also there are no treatments and I do feel a little better. I just need more strength.
It’s Tuesday and thank goodness, no chemo. I spent yesterday in bed resting, not sleeping, and the day was so long. The weather was rainy and humid so I didn’t go out until later in the evening. Jan met me at the drug store 3 blocks away. It was difficult to go the 3 blocks, purchase a few items and walk back. I will continue to try to build up during this time off.
The new news. The cistplatin (the main chemo drug) can cause permanent hearing loss. I have had ringing in my ears lately and granted my family history is of hearing loss, but the doctor thinks the drugs will not make this easier. Another hurdle. Thank goodness I took 2 sign language courses but will have to get really good at it. There are computers to communicate with others, and there are implants that can help with hearing loss. I can handle these things if we can just get rid of this disease.
It is gorgeous outside so I think I may try to sit on the bench across the street for a few minutes today. Have to watch how much sun I get. Time for breakfast.
I awoke to a gorgeous sunny day here in NYC. I am so grateful to have slept through the night and for this minute feel a little like myself. Of course Jan has not given me the heprin shot yet. I plan to negotiate with the doctors today to take this shot at night since I am having a very sick reaction to it and it takes me half a day to recover from it. I also need to increase the Zophran since nausea has really become an issue as treatments accumulate.
Obviously, I have no big plans for today but I do want to get rid of clothing I no longer wear and de-clutter this apartment. It is starting to get on my nerves. Jan will tell you this is a good sign and I must be feeling a bit better when I start rearranging things.
Rea and Shuie leave for a week at Cape Cod today and will be joined by Josh and Katherine later in the week. I am so glad the house is being used this summer but I miss being there with my kids. I try to console myself with the notion that I cannot go to the beach or out on the deck since I cannot be in the sun. What else would I do there that I cannot do here? It works for a little while.
Right now I am working on being strong enough for the wedding and getting myself through the rest of these treatments to get back to work and become a grandmother. That’s enough to keep me going for the minute.
Time to decide what to eat this morning. Food is still an issue but i still try to do the best I can. Wishing you a healthy and contented day.
It’s a gorgeous Sunday morning here in NYC. I awoke early after a very painful and nauseous day yesterday. The Nupragen shot must be working since every large bone in my body hurt yesterday and so the bone marrow must be making more white cells.
Today, I plan to get outside a little. I would like to go on some kind of errand in the car just to see something else besides the normal neighborhood and the apartment. But I am reminding myself that these next 10 days are essential to rest and be ready for July 3rd. I cannot believe that the wedding is so close.
I think it is time for meds and food and maybe a little more sleep. I am so grateful for the sunshine and this beautiful day.
Yesterday was all sleeping and recovering from the week’s treatments. Today should be much the same. It is true that the treatments become more difficult but I keep thinking only 4 more times. And I really do not know what is going to happen after that. The future is a place I do not venture to and try to live my life one day at a time. I am sure I will find out what is in store as we get closer.
Rea and Shuie are coming for Shabbat and I find their company delightful. Rea is so enjoying her pregnancy and it is a pleasure to see how excited she becomes as “Ricky Martin” moves around. We are all so looking forward to snuggling this little guy.
Joshua should be on the East coast next week. Aaron and Steph are ironing our their last minute wedding plans, and Shira is working on recovering from Mono. They all call in at least once daily and it is so wonderful to keep in touch with them.
Today is the last day of school. I feel so out of the loop. I am so hoping I will return to school in September but I am not getting my hopes up. I really miss being with the children and the routine of working life. I told Jan this morning I was always complaining I didn’t have the time to do anything I needed to do when I worked. Now I have the time and I still cannot get the things done I’d like. Accept, Accept, Accept.
Going back to bed and taking it easy again today. Meditation will help.
So far, it seems the transfusion yesterday went well and I am so ready to be left alone medically for the next 2 weeks. Today will be a day to rest, drink fluids, and just recoup.
Thank you so much for the extra prayers and well wishes. Your e-mails really keep me upbeat and give me the encouragement to put one foot in front of the other. For this and many other things, I am so grateful.
Chemo #4, Round #2 was almost complete this afternoon. It was much harder and I was very very exhausted but I have perked up a little tonight. Tomorrow, I will return in the morning to Sloan for Blood Transfusions and a Nuprigen shot (white cell booster). This will complete round 4 and get me in the best shape to participate in Aaron’s wedding. Also with two weeks off, I should be less fatigued and hopefully less emotional. This would really make me happy since I have been so anxious about this since the first day I was told I had cancer. I want to be able to enjoy life’s special moments to the fullest.
I will not be here tomorrow morning. For those who worry if I cannot be reached or the blog is not written on on time, I am writing tonight to keep you informed. I should be back here early afternoon. Pray hard.