I am so thankful it is a sunny day. It has been a long long night, up every hour and so I am glad it is morning.
I am taking it easy today. The chemo is getting a little more difficult and I am feeling tired and light headed. I think I am heading back to bed.
I am expecting visitors today and hopefully after a nap, I will be able to enjoy their company. I am also hoping to get outside and feel the sun on my face for at least a little while.
I am grateful for such a beautiful day and that this is the last chemo for this series so next week is off. Time for sleep.
I had a very tearful discussion with Dr. Roth yesterday about how it feels to hit this one year anniversary of diagnosis. In many ways I am grateful that I have survived to this date considering all the surgeries, blood transfusions, chemo, and hospital stays. But I also assumed I would be in remission by now, back to work, and gain some of my independence. This is not happening and I do not know what the future holds (that is true for us all). And so we talked for my entire hour about why this is happening. Dr Roth is quite pleased on how I have emotionally handled this journey, always trying to find something positive, trying to hold on to some semblance of my life and trying to stay out of the dark places. He also sees that I have very high expectations for myself and those too have had to be altered. THIS is where my emotions go crazy and where my life becomes difficult. I have had to lower my expectations, and I have, but sometimes they need to be really lowered (like sleeping for a whole day). This is when I tell him I am falling apart but he says I am not really. I must go back to the word ACCEPTANCE. I am really happy to have him in my life now since he is helping me see that I am doing the best job I can under the circumstances.
Chemo went fine yesterday. It is so amazing for me to get up the next morning and be able to eat and walk over to PT. This is great and I am hoping I will continue this way thoughout the treatments. (High Expectation?)
I will nap this afternoon and then Theda will come and knit with me. The rectangles are ready for strip 6 of our afghan. We are really getting quite close. Eight more rectangles to knit and then complete the sewing together. We are going to try to spruce it up a little since I really am not fond of the color combination so maybe an edge or some design on the corners of the rectangles will make it more palatable for me.
Right now I am hitting the showers to get my day rolling. I still need breakfast before I can take my meds and then get to PT by 9:00. I move a little slower than before but such is life. At least today I have one.
Yesterday I met with Dr. Healy who checked on my progress. He hinted that we may need to do more in the future but for right now, I need to go through the chemo. I cannot imagine having surgery in that shoulder again. Such Pain! But I also said I would never go to chemo either.
On the way out of the doctors, I called PT and they squeezed me in. Dr. Ralph brought in some videos for me to watch. One was South Park. I told him I was almost divorced over that movie when Jan watched it with the kids in a hotel when they were much younger. I thought the kids should not be watching it and they watched it anyway. Now it seems so minimal; then so huge.
Today I will go see Dr Roth, the psychiatrist, but I have not compiled all of your ideas yet. There is no due date but I will inform him of how many of you responded. After this appointment I hope to go to chemo unless Dr. Bajorin thinks I am not well enough. This cough just persists. I would really like to just go back to bed. I will this afternoon.
Today I am grateful That I have made it through this year. A year ago today, I was diagnosed with cancer and this journey really began. It has been a nightmare overall but there are many things I have learned, there is more that I appreciate, there is so much that doesn’t really matter and I can let it go, there are so many wonderful, caring, giving people out there, and I am thankful for each and every day that I wake up and can still do many things. I keep looking for the tiny miracles and they do show up in the strangest places. Today I am praying that I can see my health taking some steps forward on on the road to recovery.
I spent the night in Urgent Care because the cough will not stop and I was running fever. They took another chest x-ray and compared it to Tuesday and said there was no change. They were concerned because my creatinine level keeps rising. This is an indicator that my remaining kidney may be having some difficulty. It never ends. So they gave me some IV fluids and sent me home and I am still coughing!
On my way out of the hospital, at 3:00 AM, I ran into my favorite nurse, Tulsi. She is adorable and it was so nice to see her.
The good thing is that I am due in xray at 9:00 this morning on my shoulder since I am meeting Dr. Healey at 9:15. The technition agreed to take those xrays last night also when it wasn’t busy so I can go directly to the doctor. That saves so much time.
I had planned to try to drive today but it is a raining day mixed with snow. My errands are not that important and so they can wait.
I guess today will be a catch up on sleep day. I don’t know how Jan is going to fare on 2 hours of sleep but he will never complain. He is the main reason why I don’t like to go to Urgent Care. I can sleep there, he has to sit in a chair and talks to the staff.
So very tired and going to take a rest stop on this journey today. It is just getting to be too much for right now.
I am grateful that I went to Urgent Care and it was empty last night so no waiting. I am grateful that I am awake and able to go back to the hospital this morning for my appointment. I am also grateful that it is a rainy day and I am going to spend it in bed. I am praying that somehow the doctors can keep my body intact while killing these cancer cells. My immune system is so weakened that I really am not fighting back and for that I will pray hard.
Enjoy the rain, at least it is warmer.
Yesterday, I slept most of the time but I did have lunch at our friend’s, the Schenker’s, two buildings down. They have a magnificent terrace and it was really warm out and so we were able to eat outside. It was glorious to feel the sun on my face and be with people I adore. Then I went back to sleep.
I have no plans for this quiet Sunday. Jan will be working from home and I will probably knit and read and sleep. It is supposed to be warm outside but it is also supposed to rain. If the rain stays away, I might go outside for a walk.
Today I am grateful that my cough seems a little better, that I am given another day to enjoy, and that the clocks were moved ahead. :0) With all this quiet, I will also use some time to meditate and pray for the good health for us all.
I thought I was going to go to the dentist and be home the rest of the day. As it turns out my day was so full. I walked over to Broadway to meet Gale and then walked back. Then I got dressed to go to a Bris in West Orange. Then we went out to dinner with one of Jan’s clients. And I finally fell asleep at 9:00 and I was down for the count, But with a smile. I cannot believe I can still do things while having chemo. But I am trying to be me first and a cancer patient second. This weekend I will rest.
Today is PT and the Dentist again and to get Sabbath dinner ready for Jan tonight. This seems to be a little more in line to what I can do today. I will admit I am tired.
I have been getting some very good and creative ideas of how to keep busy alone in an apartment. Thank you to all of you for participating. In addition to the ideas, the weather is going to get better so I can do some of them outside.
I went to the bris last night wearing my wig for the first time. It looked very nice but I hated wearing it. Between the bris and dinner, it was OFF! I think I am going to have to wear my very short hear as long as it’s still there and go to scarves and hats. The wig was just too much for me.
So, today I am grateful that I have the energy to live my life, that my life is filled with so many wonderful people, and with all the activity, I am not going to the dark places. I am happy. I wish everyone a restful and rejuvenated weekend.
It was really nice to spend a quiet day yesterday after the very busy one at the hospital the day before.
I went to PT and my arm is getting better and I am capable of doing more things. I force myself to reach for things so my arm will get more use. I rode the bike 30 minutes yesterday. That was an accomplishment that made me very happy. And today I am still only sore, not in pain. Thank you Gd.
Theda and I completed strip 5 of the afghan yesterday and we only have two to go before we sew the entire thing together. I am so please that this afghan is going to so well.
Today I am planing to go to the dentist and out to lunch with a friend. We would also like to attend a bris at 5:00 tonight in West Orange but with Jan’s work schedule….we’ll see.
Thank you to those who have sent in ideas about alone activities. They are creative and will be compiled into a master list. I will use many of them in the next months to get through this alone time. If I can, I will go to Cape Cod for the summer and get my treatments there. Then I will be very busy playing with my adorable grandson.
I am grateful today for being pain free, for feeling like I can still accomplish things, and for all of your responses to my question. You are all in my prayers and you have provided so much support and energy for me to be where I am today. Thanks.
Yesterday was the busiest day I have had at the hospital time-wise and I made each appointment with success. Jan joined me at the end for the Dr. and Chemo.
So, my smokers cough has turned into pneumonia but I am not concerned because this usually happens to me in February when I am teaching. I am now on a Z-pack which has always worked in the past The x-ray, that they took of my lungs did show there are more cells but I have a great deal of treatment ahead of myself. I do not want to go bald BUT if the chemo is to kill small growing cells and I still have my hair, it is not doing it well yet. I am going to use my hair as my borometer. When it falls out, I know the chemo is working.
Let’s talk psychiatry. I spent my entire hour talking to the psychiatrist about withdrawal from Ativan. I am having major withdrawal symptoms and panic attacks. From past blog entries you know how Jan feels about this. This Dr. explained to me the difference between addiction and dependence. Addiction is when the brain or psche must have the drug and Dependence is when your physiology or body have gotten used to the drug. He believes, after working with me, that I am not addicted because I usually have asked to have drugs removed from my list of TO TAKE. But my body is used to this drug. He has decided to put me back on Ativan for a week and we will taper off very slowly for a long period of time. He believes my sad moods for the past few week are attributed to withdrawal. This was good news because I didn’t know what decision to make and the withdrawal has not been easy considering what I am going through right now.
The good news is that I woke up this morning almost pain free in the shoulder. It just feels a little sore. I’ll take that! And, I have PT today so we can work on that arm. I am doing a lot more but it is still a long road before I can use it again. I have added exercise to my time at the gym so I can try to get in shape while under supervision. Once I can do it myself, and feel confident, I can do it alone outside when it gets warmer or I can exercise here in our gym in the building. Right now, I can ride the bike for 10 minutes and I’m tired. The first thought is: “What! I used to be a spinning instructor!”. That’s because of my usual high expectations of myself. Well they have to be knocked down somewhat. (Another thing I have learned on this journey). I rode the bike after one year in bed, after 2 surgeries, while having chemo, and an extra 20 pounds from the medications, and in withdrawal from Ativan. I must give myself a break. But, today I will see if I have the ability to add some more time. I will build up even if I have to do it Slowly. SLOWLY seems to be the word for the day. Never had that one in my vocabulary before!
I have also been given an assignment that I can share with anyone so that includes you, the blog reader. I am to come up with activities that I can do in the house alone besides knitting, reading or TV. Reminder: this is a small apartment. These activities are necessary to keep changing every hour or half hour to keep my brain stimulated. Any suggestion? PLEASE SEND THEM TO ME ON MY E-mail : firstname.lastname@example.org. We are going to compile this list not only for my list but to assist other patients who have had their life’s routine taken away and have to adjust to being alone. Always the teacher or trying to find a volunteer project.
Speaking of projects, the afghan will have it’s fifth row probably by this afternoon. We ran out of yarn. So when the new yarn arrives, more knitting to finish it. Then it will be ready to send to Israel. This is quite an accomplishment on the part of only 2 people. Theda, my knitting partner is a godsend. She sits with me for 3 hours on Wednesday afternoons and we relax and knit together. I enjoy this kind of company. I don’t feel as if I have to entertain her. And she even called on the snowy day to check on me. I think she was another of those angels sent from my higher power from nowhere to help me on this journey. Theda has lost a child (23) that was always ill, and so is very understanding about what I am facing each day. Theda is one of those miracles.
Speaking of higher powers, I have a funny story. When I was asked to get my medical card out of my wallet yesterday, I glanced at a receipt from Nordstrom from my day out shopping. It said HIGHER POWER! Those are the words facing me as I started the day at the hospital. I thought this was a little miracle too. Once I read the receipt when I got home, it was for Spanx, a type of girdle. No wonder it said Higher Power!!!!!!!!! But I did remind myself of those words all day and they were helpful.
So for today I am grateful for the words, SLOWLY, HIGH EXPECTATIONS and HIGHER POWER. I am also grateful for my other angels Dr Michael and Dr Ralph, because I awoke today with very little pain in that much painful shoulder. I am in a much better place right now and for that I am immensely grateful.
Today I will be spending most of the day at Sloan. I have a chest x-ray, pick up prescriptions, bloodwork, psychiatrist, Dr. appointment, and chemo all lined up. It will be a whole day experience.I will look forward to the benedryl that I have IVed before the chemo so I can take a long nap :). I really need one. I haven’t been sleeping through the night lately.
I spent the day yesterday knitting more rectangles and teaching myself how to watch TV or videos. I rarely have done either in my past but I have been told that it is a much needed outlet when I am alone so much. (Visitors are very welcome). It is difficult for me to pay attention, but we just got a large flat screen in the bedroom and so I am trying it out with DVDs. I will usually knit while the video plays to keep me in one place. So mainly I am now listening to TV.
I did take a walk in the snow yesterday to PT. It was beautiful and I was happy to be outside when the snow was still white and it was very quiet. I was also very careful not to fall.
For today, I am grateful that I am going to Sloan for the day to get treatment and that I am handling this chemo much better than the last time. I am also grateful to many people who have told me that they are praying really hard at this time for my recovery. I really appreciate all of these prayers. They are so important now.
We are having our first real winter storm today and I am not sure what I am going to do about PT. It is only 3 blocks away and I usually walk it. Jan wants me to take a cab so I don’t fall. It seems stupid to me to have a cab drive me three blocks but I guess he is right about me falling.
I am reading a book (a novel) in which one of the characters develops breast cancer. There was a very important saying in the book which I must remind myself of all day. “I cannot control this disease but I can control my reaction to it”. My reaction lately has not been as positive as it should be. It is very difficult while trying to get this Ativan out of my system. Jan believes this is the wrong time to be doing this since I am going through a lot right now. I will discuss it with my nurse, Annmarie, today as well as the cough which has gotten worse.
This week is pretty empty of plans except for Dr. appointments and chemo. I really like to be busy or have company to keep me from going crazy. I do plan to do some straightening of this apartment since I have been lax the past few weeks. Also, the fourth row of the afghan is sewn together so I could continue knitting a few more rectangles. I also have some books to read and I am taking the time to meditate and pray a bit more. I really miss the routine of having a job to go to. I loved my job and really miss it.
I am grateful for a new day, that I am in a warm, comfortable place during this storm, and that I am trying to work on my attitude toward this journey. Have a safe day if you have to go out or are on the roads.