I have slept the entire weekend away and awoke looking at the beautiful sunshine here in NYC. As usual the plan of the day is forming in my head but what I really will accomplish is something else. I know that Rea plans to visit and rest with me for awhile, I need to recycle all the bottles from the liquid I drink each day, I can get the laundry done and Jan’s shirts downstairs to the cleaners, and maybe, before it gets too hot, cab it over to Barnes and Nobles for a new book. The last one is really negotiable.
This last treatment has been much more difficult than the prior ones with much more fatigue and much more pain while the nuprigen shot helps create white blood cells in the large bones. I have to keep reminding myself that 2 weeks tomorrow will be the last time I have to take this poison (at least that is the plan) and I will need time to get this stuff out of my system. I am looking forward to the scans with excitement and dread mixed in. I want to hear good news and know what the next steps are and I am also afraid the news will be good but with other complications. Nothing has come easily.
I keep thinking about my classroom and what will be needed for the fall even if I cannot show in time for the Sept 2nd opening date. Dr. Bajorin says we will discuss this after the scans. I cannot imagine many more months of being tied to the apartment and sleeping my life away. For someone with my energy level and brain speed, this has been a marathon in self-control. There is so much I think I can do an so little I am able to do.
Our cousin Stephanie gave birth to a baby boy this week. She is one of 3 girls and she and her sister have produced 5 grand-daughters. Needless to say, Her father Uncle Larry is besides himself to finally have a boy in the family. His Circumcision is Thursday in Newton, Mass and I am determined to get there and celebrate with our family. Again, my head says let’s do it, let’s see what happens by then.
So for today, I am grateful I am awake and have learned to eat cereal and milk. The sun is shining and I am a day closer to finding out what is happening to my future.
I have now slept Saturday and early Sunday away. I feel like I could just go right back to bed again. In my mind, I want to go car shopping since our jeep is due back in August. Or look for blinds for our living room since we have never been here in the summertime and the sun is very hot. I think I will take a shower, take my meds, eat something, drink something, and probably evaluate that that was enough for right now. Shower and bed. Have a beautiful Sunday!
It’s already Friday and I am awake and ready to face the world. I slept the entire day day away yesterday even while Rea was here but made a great dinner for my adorable husband and even watched an entire video with him without falling asleep. I guess it was date night!!!
We cannot go to the cape again this weekend since Jan has to be at the office today for meetings but that’s OK. We WILL get to go again before the summer is over. It will be nice to have a quiet Shabbat here alone and to just get our bearings to prepare for the next few weeks.
I have been enjoying myself shopping on line for my new grandson and preparing for his arrival in about 6 weeks. These wonderful life moments are keeping me moving and energized to get through these treatments and back to some semblance of the life I once knew.
I am so grateful for many new comments that have come across from people I have not heard from in years. They are so kind to remind me of how they saw the life I lead. I forget day to day but I have really done a lot and touched many many people. That is a true measure of who I am and the life I try to persue. I am so hoping that once I get through these tough times, I will have the ability to encourage someone else while they are going through it.
This journey has taken me many places. I have caught up with a cousin, Alan, who I have not seen since we were probably teenagers and are enjoying each other’s humorous company. Three cousins, my father, and I have remedied a tomb stone situation for a cousin who passed away 3 years ago, I have talked to a second cousin and found that her husband passed away and I did not know about it. His father was my favorite Great Uncle. How did we lose touch? We just get so busy. I have caught up with many friends from our Caldwell community that I lost touch with when we moved to the city. And I have acquired many friends that I never had before that just wish to share. Jan was brilliant when he started this blog for me. It is so cathartic to write each morning and so healing to hear from others.
So, on this gorgeous summer day, which I will spend in the air conditioning, I wish you sunshine on your face, health and to remind yourself what you are truly grateful for. There is so much we are given that we just take for granted. Find at least one today. It will make all the difference in the world.
I have been asleep for two days and now awake enough to write a little. I am here in sunny NYC and my darling Rea will be coming to visit today. I love this time alone with her. We usually talk a little, share a little, and sleep a lot. Once in awhile, if we have the energy, we watch a video together. That’s when I usually fall asleep.
My lovely friend, Dorothy Lewis, was kind enough to take me to Sloan for my nuprigen shot yesterday which gave Jan a reprieve and he stayed at work until 11:00PM trying to catch up on the time he has had to spend with me at the hospital. I don’t know how he does it and never, ever complains.
I have presently taken all the post chemo drugs for this round and now will attempt to eat something for breakfast. I have watched my husband and kids here at home an in school eat cereal with milk forever. Never appealed to me. I actually tried it yesterday. Not bad and it will do. Old dog new tricks.
I am grateful today for the ability to get up and walk straight today and for the love and support from so many people from so many walks of life. I am truly honored and appreciative of every one of you. I pray each day for your continued health and joy.
Happy Birthday Aaron!
CEMO#5 second round is behind me and my doctor reminded me that I only have 3 more weeks left to treatment and the scans. It seems so far sometimes and I was in need of another transfusion yesterday.
I will eat something, go back to sleep, meditate and then make a gratitude list to turn my head around a little. I will also have to go to slaon later for my nuprigen shot.
The visit to Cape Cod was well worth it as I got to walk around in the beautiful sea air and see my girls and their significant others. We even had Leo’s parents for Shabbat dinner that my kids prepared.
The rest of the time I slept. We enjoyed it so much that we didn’t return to NYC until Monday afternoon. By the time we arrived in NY, the dizziness that surfaced a few times while at the cape became worse and so we spent the night again in Urgent Care.
A brain CT Scan, 6 hours later, determined that I have now developed positional vertigo. So I get really flaky going from standing to sitiing to lying position. It’s better than a spread of the cancer in the brain. I am starting to get disgusted. I am so close to these treatments being over, (2 more after today), but complications continue to get worse each time. My courage is waning somewhat now that we are getting closer to a new treatment plan. Sometimes I just want to stop and just accept things as they are. When I am lying on the gurney and I look at my precious husband, I wish there was some way I could protect him from all of this. He is always so positive that I will beat this disease. Last night he was also scared.
Times like this I am so sad. We have a wonderful marriage (34 years) and a great family. Yes, life is not perfect but we have been so lucky together. Here is where questions only get answered with another question. I lnow better than to ask but I do feel ITS NOT FAIR!
Well, time for the next hit. Should be back later this afternoon for more sleep. I know I am in need of a lot more strength to get through another day. Time to ask something bigger than me for help.
I have been asleep for 2 days trying to get the chemo out of my system. But great sleeping it was. I actually took my pilloww and quilt out on the deck when then sun was hidden behind the clouds and slept witth the breeze blowing across my cheeks. The smell of the ocean was worth it. Jan did try to walk me down the stairs to the beach to feel the sand and water but I had to return immediately and it was a chore getting back up the stairs and home. But we did it!
I have had the chance to be at the cape at least once this summer and to look through old pictures and just wander through the house with some of the kids here. This is a gift. I do see all the things that need to be “done” but knowing I do not have the ability to do them makes it so much easier to just walk past it. It is so odd to not have flowers planted or winter clothing put away or given away but these things will wait for the right time to be tgaken care of. There are weeds just calling my name but poison ivy now?……..Don’t thhink so.
We will return to NYC today or tomorrow and I am ready for the next chemo hit on Tuesday. It does get more difficult; more painful, more nauseuous, and more fatigue but I know I am almost there and will ready myself for the next stage of treatment. Who knows, this may seem a breeze compared to what is ahead. All know is that I will do what I need to do to get as healthy as I can to expeience my life the best I can be.
With little fanfare and a lot of nausea, we arrived home at 11:30 PM. The hydrangeas were pouring blue huge blossoms out of the flower beds, the stars and sky looked like they were painted in Hollywood, and the sea air was so fresh, I just wanted to sit outside for hours. But I was very tired and my four poster bed was calling my name. I slept like a log!
Jan just went out for a bike ride and I am walking around my house that I have not seen since January. The kids are asleep (I checked on them all) and the quiet and serenity is so healing. I do notice all the things that have to be done but I also am aware that I am not doing them on this trip. They will wait for me.
Before coming yesterday, Jan checked in with Dr. Lovette’s office to find out just what we need to do in case of one of my “complications”. They gave him instructions and also told him they can administer my chemo drugs here at the cape. If I could drive and have someone stay here with me, I could stay at the cape longer. BUT, I really am so much more comfortable at Slaon and especially knowing Jan is with me. My Hero. He keeps track of everything that is administered to me as well as ask the multiple questions we have and explains the answers for me in “real People” terms. He also tries to help me keep the demons in check.
So my plan for the moment is to get the meds under way and some food and liquid into my body. I must take another nap before the kids get up so I have some energy for them and possibly walk the beach before the sun gets too hot. I am also going to try to paint a little and just breathe the air.
This is my miracle for today. I did not think I would ever get here this summer but even for this one time, the trip was worth it. God has been so good to me. A wedding, a trip to the cape, treatment that is working, and a new little boy to look forward to. As well as supportive family, friends, and giving me one more day to enjoy my family and life.
Today is the day we will try our first car trip to the cape. My only concern is the nausea but I am willing to try so that I can at least get to the beach once this summer. I have not been out of the apartment and our few block neighborhood very often since April. A few trips to Passaic, one to see Rea’s new house in Bergenfield and Aaron’s wedding was the big one. This is the new challenge….4 -5 hours to the Cape.
I am staying away from the internet and any information that is not shared directly by my doctors because I was very depressed and afraid all day yesterday. Jan continues to remind me that statistics may not apply to me so just listen to the doctors who know the specifics about my case. And so, I am back to functioning for today and praying that my higher power and my doctors know what they are doing. I know to go to the top in all cases. Heaven and Sloan-Kettering.
And so Jan and I will head to the Cape and meet Shira and Rea and Shuie for a quiet weekend. I feel more secure about going now that I have a medical contact 10 minutes away. Will continue to write there.
Thank you for all of your well wishes and prayers. I know that they are helping me improve each day. Have a healthy and serene day.
All went well yesterday during the treatment with no complications so far. I even had a special visit from my friends the Nadels since Howard had an appointment in the building. It was great seeing them since I have not seen them since Josh was in 9th grade.
We did get a lot of news though.
My last treatment is scheduled for August 5th, On August 6th the following scans will be done all in one day: Bone Scan, MRI, CT Scan and PET Scan. On August 12th, we will meet with Dr. Bajorin and the team to make the decisions about the next phase of treatment. That means surgery,
I asked if I will be able to return to school in September and he felt I may need more time. Not a lot more time but some.
The great news: Dr. Bajorin has a friend, Dr. David Lovette, trained at Sloan, who practices oncology in Hyannis, Ma. Dr. Bajorin tells me that if I think I can make the trip, I can go home to the cape. Dr. Lovette can handle any complications that may arise but I must be back in NYC for chemo treatments each Tuesday. I cried tears of joy. Even if I get to walk the beach one time and see my hydrangeas in bloom, and possibly paint one painting, I will be happy. That was my miracle for yesterday.
I couldn’t sleep last night since I have insomnia from the steroid and made the mistake of reading about my specific disease. I had promised myself after the initial readings at diagnosis, I would not do that again because it frightened me too much. Also statistically, I do not match this disease. I had decided to just do what my doctors told me and keep hoping and praying that God would do his part. I wish I had not opened Pandora’s Box because now I have so many questions and many new fears.
I am very nauseous this morning but full of energy. Unfortunately, it is supposed to be 90 degrees here in the city or else I would try to get outside. Right now, I will try to lie still and let the meds do their magic and maybe even get some sleep.
Thank you for all of your prayers. I love getting the e-mails from you. This is great company since I feel you are with me while I am alone in the apartment. Phone visits are fun too.