When we left for the Cape on Tuesday night, I decided to take a hiatus from the blog. The anxiety of the upcoming scans and appointments has been keeping me up all night and I just wanted to enjoy my family without discussing cancer, tests, pain, dying, losses, fear, etc. And so we tried our hardest not to go there and only when pain became an issue.
Tomorrow morning, I will be at PT at 8:30, then on to Sloan for shoulder X-rays and meeting with Dr. Healey. The fear is sometimes unbearable of what he will tell me, but I must go and find out what my future holds with this disease. The shoulder pain is not as acute but after exercise it needs lots of TLC and heating pads.
I met with Dr Russo on Tuesday and he says my scar from the kidney looks good. Scans will be Dec 15 and I will meet with him again on the 19th to go over the scans and have another exam. Dr. Bajorin is scheduled for the 18th and since he is the oncologist, he is the chief. I pray that there will be no more chemo since I am not sure I can endure that again.
I am so surprised to find that I am such a fearful person and am crying at the drop of the hat. I used to think of myself as very confident, energetic, and talkative. One close friend described me as fragile this weekend. She is so right. This disease has changed me in ways that even I don’t recognize.
If my Higher Power wills it, I will get up tomorrow morning and face the new news and challenges. I am grateful I had 5 days with my girls and their significant others and baby Yonah as well as Simi and Huvi for the weekend. Now back to NY and back to the journey.
After another long night of sleeping two hours then up one hour, I am getting my mind and body slowly ready for the day. I feel numb. I am so trying to stay away from the what ifs and taking each moment as it comes. The pain in my shoulder continually reminds me that I am still trying to recover but again I must remind myself how far I have come and how many battles I have already fought.
Today I will visit my favorite chemo nurse, Ann Marie, who now works for Dr. Bajorin. She will flush my port and get prescriptions ready for me. Thank goodness there is now only one! Then down to Dr Russo for my first follow-up visit post kidney surgery. It seems like a long time since Sept 22 but he is a very busy man.
Jan will meet me at the doctors and then we will return to our apartment, pack up our gear, pick up meat at the kosher meat market, and head to the Cape. I usually am very excited about going home and seeing the kids but again, I just feel tired. I am certain once we are on the road and there, I will feel better. A good walk on the beach, even in the cold weather will do nicely to lift my spirits.
We plan to return to NY on Sunday and I will spend Monday at PT, having x-rays on my shoulder at Sloan and meeting with Dr. Healey to review all the shoulder scans. Sometimes I can’t wait to know what’s happening and sometimes I just don’t want to know.
I am feeling good right now physically, getting some food in (especially chocolate), exercising a little, and staying awake all day. I know emotionally I am falling behind a little and am very weepy and anxious but I am working on that continually. And spiritually, I am doing the best I can by having my discussions with my higher power continually during the day. All of your prayers are helping me slide by right now.
It is time to do my shoulder exercises, shower, get dressed and begin to pack up the things we need to move out to the cape. This takes a lot longer than it used to but I have until 11:00 before I need to go crosstown to Sloan.
Wishing everyone a healthy, comfortable and content Thanksgiving. For today: Just breathe.
Yesterday’s MRI did not go mechanically according to plan. I was supposed to be in at 9:00 and out by 10:00. The computer decided to get quirky after I was in the machine 15 minutes so I was pulled out, the computer was reset and we tried again. After 15 more minutes it did it again!. All of the time I was in this harness and my shoulder was very uncomfortable. Then they decided to restart the whole machine which took another 20 minutes and voila! it finally worked. It was a very long time to be in the shoulder apparatus and so I came home and took a nap. I am no longer fearful of the results because there is just nothing I personally can do about them. They are what they are. The doctors will read them and make the decisions. And I, the good soldier will do what they tell me to do.
Unfortunately, since the MRI took so long we missed our visit with the Gorskys. I had another surprise visitor from Va last night. My friend Teri Barr came with her new mate and chinese food. I haven’t seen her in years and years. Jan went to a wedding in Lakewood and of course since I am in mourning for my mother, and it was going to be a very late night, I could not join him. The visit from Teri was entertaining and having company was great for me.
Today PT is later in the day so I will walk to do some errands before and after. I have completed the two ponchos for my nieces which I will mail out. I also have to gather kosher deli and cheeses to take to Cape Cod tomorrow. I will also need to pack some very warm clothing. I am so relieved that I can go to the Cape without the fear of being too far from Sloan. Things are looking up.
I am grateful I did not wake up in pain this morning (although I haven’t done my exercises yet) and that I am getting more movement in my arm. I am grateful that I can look forward to going away and not fear that something will happen that I will end up in urgent care again. I am grateful that the first set of scans are completed. I am so grateful that I am here, awake, and well enough to share this journey. I am especially grateful for all of your prayers and well wishes. Kindness and caring have been the ultimate medicine during this journey and I never would have come this far without it. So for that I am especially grateful and say THANK YOU.
I am leaving in a few minutes for the MRI on the shoulder. Yes, it is Sunday but Sloan is so busy that they are working all weekends including Saturday nights to get scans done. The fears I have had all week have subsided since what will be will be. Hard to accept but I was making myself really anxious and had to start taking the Ativan again to stop the shaking and crying. I am praying for a miracle. That there will be no more cancer and that the shoulder surgery was successful. Your prayers have helped me through this time tremendously. The body scans of the kidney area are not until Dec 15th so more waiting.
We have a delightful surprise coming to visit today. Teri and Bruce Gorsky, cousins from Ma, are in town and will be coming to visit. I am so looking forward to seeing them. We haven’t visited personally in awhile since we were not at the cape this summer and they couldn’t make it to Aaron’s wedding. We have visited on the phone which was so appreciated.
Off to Sloan. Enjoy the brisk sunny day. And please pray hard for this miracle.
I am feeling so much better physically but emotionally having a very difficult time now. This is expected since I am in limbo waiting for news. Now that I am not sleeping all the time, the days here alone drag on forever and I am thinking and thinking (bad idea). I am starting to feel sorry for myself and I long to return to my life when my kids were around or to when we lived in a community where I knew so many people. I realize that life goes on and it is never really the way you remembered it. So, for today I must accept that I am where I am supposed to be at this time and make the best of it.
I spent yesterday working on the poncho for my niece and just being. I also rode my bike 20 minutes and did my PT exercises. This morning I will goto PT again and know it is not going to be fun. But I do know that once the pain has subsided that I see improvements in the use of my arm and shoulder. The price to pay to get well.
Today I am going to try to stay out of the past and the loses and remind myself of the gains I have made and there are a lot of those. Even if I am told the cancer is not gone, I will have to face it and whatever treatments suggested and be happy that I have come this far and have many more good days physically than bad ones. For this I am very grateful.
I am filling the days reading and knitting while waiting between PT, Doctor Appointments and Testing. I am getting quite bored and trying not to get steps ahead of myself to keep my sanity.
PT was very difficult yesterday and today I am in a great deal of pain. I even thought of taking something for the pain last night but iced the area and fell back to sleep. The good news is I can now lay on my back and lower my arm by myself all the way to the bed. With little assistance, I can lift it back up. These are the little steps that must be celebrated each day. Also, Even though I was up every 2 hours, I stayed in one bed and slept much more. Another little gain. For these I must be grateful.
Jan has been trying to reassure me about the cancer and the upcoming scans telling me that the cancer was beaten back by the chemo and what was left was removed. I have to use this like a mantra now to keep my mind away from the the fears and what ifs. I must admit, this is not always easy especially since I spend a great deal of time here alone. Many times, if I go there, the tears are overwhelming and panic sets in.
I am so looking forward to returning to work with the children and interacting with my colleagues. It will be much better for my mind to have a routine and be able to feel I am accomplishing something in my life.
This is a very boring but trying time for me on this journey. I am feeling so much better but not well enough to do a tremendous amount, like go back to work. I am also having panic attacks about the upcoming testing. Transitions have never been easy for me and I want everything yesterday. Waiting is not one of my fortes. I am so afraid that the scans are going to show more cancer and I am not sure what that will mean for the next few months and what treatments are available. I know I do not want to do any more chemo or surgery in the near future. This is the time I must remind myself to stay in the moment. The thoughts that swirl through my head when I am alone are not good for me or anyone related to me.
I completed a poncho I was knitting for my niece yesterday so at least I have measurement of the time I am spending here waiting and recovering. I need a new project and a new book so I don’t go stark raving mad. Sleeping through this time is not an option since I hardly sleep through the night now without changing beds a few times.
So for today I am grateful that I am feeling better, I am going to PT this morning, and plan to pick up some items at the drug store. It is really cold outside so I guess indoors will be the place for me today. I wish you warmth and comfort today.
After an activity filled day I thought I would be able to sleep but to not avail. I think I tried every flat soft surface in the apartment. I was so miserable that I was even tempted to go back on the narcotic. But there is no way I want to be a zombie again, sleep or no sleep.
I have no plans today except to get this apartment straightened out. It is very disorganized and I think there are things that may go to the cape house so I can stop tripping over them.
Otherwise, today is an exercise day with PT first and then a walk or ride on the bike. My goal is to get stronger and healthier and so it takes a lot of work. and Today is one of those work days.
This is our first really cold day and a little bit of snow. I missed three seasons while I was in bed. It doesn’t seem right to me to be wearing warm clothing again but time really passed by.
Wishing you a healthy and content day.
I decided after PT that I was not staying in the house again and that I would meet my colleague, Sue Simbol, for lunch and spend time in my classroom to observe how things are going. The children are adorable and I saw so many wonderful things going on in the classroom. I was fearful that I would not have the energy by January but even though I was not involved but observing, I made it through the whole afternoon and am not tired. In a little pain, yes, but not tired. 42 more days of recovery and hopefully the scans in December will show I am ready to return. I got many assignments that I will try to complete before I return so I can cut down on the pressure when I begin again. It will also keep me occupied here when I cannot get out.
This day has been a gift. It reminded me that I love my job and that I really want to return to the children. It also alleviated some fears of whether I could do it or not. My assistant is so capable so I am not worried now. Let’s just hope the doctors have good reports and that I am clear of this horrible illness so I can go on with my life.
Last night I just couldn’t find a place for myself. We had dinner out, which I barely made it through due to the hot flash and energy loss but somehow pulled it off. Then we walked home 1 mile from the restaurant. I was sure that those activities would tire me out enough to sleep. But no, I Packed myself with pillows, I read, I walked, blankets on, blankets off, and finally fell asleep for a few hours in a chair. The discomfort was so unbearable that nothing helped.
This morning I went to PT and I really hurt. I must look at all that I have accomplished, not what I have left to do. It seems to be so little sometimes but my body has been through a war. I’m really not good at small measurements. But I must remind myself that I am not nauseous all the time, not sleeping all the time, dressing myself, showering and washing my own hair and putting in a ponytail. I can lift some very very light things and I can tie my shoes. I can even walk for blocks and blocks and not get tired unless that hot flash thing happens. I am even eating once in awhile when I remind myself it’s time. I can sleep on my side for a short time and I am only taking tylenol. For all of these things I am so grateful.
Then I wonder if I will ever have the strength and energy I had prior to this illness and become very afraid. It seems I have a giant mountain to get across yet and I have climbed so far. I am so hoping that the doctors will tell me no more treatments will be necessary so I can continue this assent up the hill.
I do have fears about returning to school since I will not be able to pick up children, move furniture, or carry heavy objects. This is going to be very difficult for me since my job takes tremendous emotional and physical energy each and every day. And or course I want to give it everything I’ve got. I just hope it’s enough.
I am planning on trying to drive over to school today to get some info on some new systems that have been implemented. I would like to get one up on it before I return and get overwhelmed. I must think this one through since I am weary from PT and my shoulder is in pain. We’ll see.
For today, I am grateful for all that I have accomplished and for strength to keep on trying.