AND THE JOURNEY CONTINUES

At my visit with Dr. Bajorin today, we did get the great news that there is no cancer in the area where the Kidney was removed.   The scans have found some irregularities in both lungs.  This could be an infection or cancer.  So I will not be returning to school in January until they figure out what is happening and if I need treatment again.  Bloods were drawn for a 5 day study to find if it is an infection (please let this be) or if not I will have a biopsy in January to determine what it is.  The PET scan on December 30th will also give us some clues.

I am feeling hysterical and exhausted at the same time.  The hysteria is after all of this there is more and how long will I survive.  The exhaustion is that I don’t think I can do anymore.  I know this is temporary.  I will fight whatever it is but needless to say, the news was crushing.

For today, I will pray that these marks in my lungs are not detrimental and that the pain in my arm recedes. I am in shock and sad.  Please continue to pray for a good outcome.

Back To Sloan

The flexerol did nothing but knock me out.  The pain in the arm is still there and maybe a little worse.  So I will go back to Sloan again today for some other medication.  I was planning on going over there anyway to meet with Dr. Bajorin so it is no big deal.  I just wish there was something to ease this pain.

Not much to share since I have been asleep most of yesterday and just woke up now.  Will write more later. I am going back to bed since I am still groggy.

BETTER

I felt really badly writing such a negative blog this morning and so I decided to write a new one for today.  I spent the morning first at PT where Ralph massaged my sore arm.  Then to Sloan to meet with the pain team.  They ordered X-rays of the humerus which are negative for breaks and a sonogram to check for blood clots which is also negative.  Dr. Healey has ordered me back into the sling for 2 weeks to let the muscles settle down and I am taking a muscle relaxer called flexerol to try it out.  I hope this works.  I will be sleeping a lot with the medication but I want these muscles to stop hurting.

More good news!!!! Although it is not official, the pain doctor told me the body scans taken this week are negative for cancer.  This is amazing news.  I will meet Dr. Bajorin tomorrow for him to tell me officially and what the next steps are.  It seems impossible that we may have actually won this war for the time being.  I can’t believe it!  All of those prayers, wishes, and hopes, and truly being answered.  Thank you.

I knew there were miracles to be seen today and I just had to wait to find them.

DESPERATE

I must be desperate since I am going to meet with the Pain Team AGAIN this morning.  I took the Percoset last night and yes it made me sleep well but the pain remains and today may even be worse.  Something is going on and no one can tell me what it is.  I am fearful that the cancer has spread into my arm bones and maybe it isn’t muscular after all.  The PET scan on DEC 30 can tell us if this is possible. The only reprieve I am getting from the pain is to ice it and after that it is roaring back.

It was suggested by Dr. Healy’s assistant that I go to URGENT CARE last night and I refused since there are so many patients who are so sick that need it and the nurses are so over worked.  I know. I did it 13 times during this journey and I was desperate each time. I am so angry because I feel like I am going backwards and I am so close to recovery.  At least I think I am.

I so want to return to my job in January and am so scared that is not going to happen.  This arm pain is holding me back and I really am at my wits end.

I feel badly complaining like this on the blog.  I usually try to find something good, a little miracle, or a prayer for others.  I will think of something so I can get my mind off myself.  But for now I am going back to bed.

REGRESSION

I did go for the scans yesterday and we should have results within the next few days.   They were very hard to get through since my arm was contnually getting numb in one position.   We are praying that these scans will show no cancer in the abdomen and pelvis.  I was not anxious at all, I just did it.  

I feel that I am regressing when it comes to recovery of my arm.  Ralph, my PT, is not even sure what to so with me since the pain is so bad that we cannot exercise the shoulder.  Dr. Healey doesn’t know what is wrong either.  The pain is unbearable sometimes and I am exhausted.  I feel like I am back to the chemo days when I am begging for the next dose of drug and just laying around living in a fog and napping in between.  The only relief at this time is icing the area which lasts for a short time.  I am disgusted.  I have been traveling this journey for almost a year with many ups and downs but with recovery in sight.  Now, I am just worn out emotionally, physically, and spiritually and cannot deal with this pain.  I also feel sorry for Jan because he doesn’t know what to do with me and I know he is feeling so frustrated.  I am not even sure who to go to for help.  I slept in 2 beds, on one sofa and in a chair last night.

The PET scan will take place in 2 weeks and hopefully then, it will show what is happening in the whole body.  This scan will pick up cancer locations.  I am so hoping there is none anywhere but I am also desperate for an answer to this pain.

For today, I am so grateful that I have come so far and that the scans are completed.  I cannot wait to see Dr.  Bajorin on Thursday.  I am grateful that overall I am feeling so much better.  I can eat, walk around outside, dress myself and shower without the fear of feinting, I am not nauseated, and I am awake almost all day long and I haven’t been in  Urgent Care for two months (although Jan threatened to take me last night).  For these things, I am so appreciative. I am also looking forward to returning to work even if I have to wear an ice pack all day.  I am praying today for an answer to why my shoulder and arm are not healing and that I can get some relief from this pain.

SCAN DAY

Today is the day for the body scans.  I am pretty calm right now since I realize that what will be will be and I will have to deal with whatever news comes out of it.  I am so involved with the arm pain at this point that I am Just overwhelmed and trying to get through the next minute.  Jan talked to Dr. Michael who is now ordering a PET scan (to see if there is any cancer anywhere else) and more tests to see why I am in so much pain.  Last night I slept in a chair again.

I spent Friday night with my Father and husband at our friend’s home for dinner and we had a lovely time. Saturday, Dad and I relaxed together while Jan attended Synagogue.  My Dad was fascinated by the boats and helicopters on the Hudson and spent most of his time in front of the windows.  He also brought me a Banana Bread my mother baked the week before she died from his freezer.  I put it back in my freezer.  I cannot eat it!

Yesterday, Jan took me shopping for a few gifts and to return some things in NJ.  It was nice to be out with him for the day.  We came home and just relaxed and enjoyed each other’s company.  That’s a day that I think is special.  Time with Jan–just being.  When we were in Barnes and Noble, we met my colleague from school, Chris Babitz and her magnificent baby Sophia.  I had not seen the baby and she is already 11 months old.  She is stunning!  I am so looking forward to seeing how big Yonah has gotten in the past few weeks.

We plan to go to all the scans and appointments this week and then to Boston on Sunday.  Then I’ll get to see my kids and grandson.  Can’t wait!  

I am praying today that the body scans show that the kidney area is clear and I will meet with Dr. Bajorin on Thursday to tell me what the plan is from here.  It’s been such a long road and I am so praying I am going to get a reprieve and be near the end of this part of the journey.  I know this journey will be a part of me as long as I am alive but for now a reprieve will suffice.  I am so grateful for how far I have already traveled and I am hoping there is a lot of life ahead to enjoy with my family, fiends, and supporters. 

A Surprise and Some Sunshine

Yesterday, my Dad called from Pa to see how I was doing.  We usually talk each afternoon.  He told me my brother, David, was coming to NY overnight for business and would I like an over night house guest.  What a delight. My father has never been to see how or where we live here in the city and it was a wonderful surprise.

We took him out to dinner at a friend’s home (a prior invitation) and he had a great time being with people and eating a home cooked meal.  And he has been sitting in front of the windows enjoying the ships on the Hudson and the sunshine pouring through the windows.  I am delighted to have him here with me and hope that this will give him the confidence to come again and maybe come to the cape this summer.

I am still fussing with the pain in the arm and shoulder.  PT helps and then the next day is pain again.  Jan has talked to many people  who have had basic shoulder surgery and they say that the recovery is just very very long and painful. I can support that but Jan needed to hear this too because it is so long and arduous right now.

I am having second thoughts about my ability to return to work since I am still getting very tired.  I want to try to do it and build up as I go along.  Maybe by next year I’ll be back to my energy level. 

For today, I am grateful that I have my father with me and that the sun is shining brightly.  We will take it easy and just enjoy each other’s company.  What a gift!

THE WEATHER

The weather has been causing terrible havoc with the pain in my shoulder.  I even resorted to taking the strong meds last night.  I am getting very frustrated with the recovery from this surgery.  I am aware that I have passed many hurdles on my journey and my tolerance level is diminished but this one is just not going away.  I am trying to remain calm about Monday’s scans but in the back of head the fear is there.  I know that transitional cell cancer is curable except when it travels as mine did.  I have to remind myself that even though it traveled they were able to rid the shoulder of the cancer.  Now I just need to rid myself of the pain and make the shoulder usable.  The pain exhausts me.

We have a quiet weekend planned and so I will go to PT this morning and then to Barnes and Noble since I think I have read everything in this apartment.  Jan, a fanatic TV watcher and in his brilliance, knows that when I get anxious and start to panic, he usually will put on a video and sit with me until I am distracted.  We need a couple of new ones since I think we are on our 4th viewing of some that we have and Netflix is not due until next week.  I am not a TV watcher so this is really a novelty for me.

And so on the journey we continue.  It amazes me that the pain in the “gall bladder” started last January. A year has gone by already! Someone told me last year to write this year off and I didn’t understand that at the time.  With all of the prayers and energy going around for my well being, let’s hope the new year brings good news and recovery.  Thanks for continually helping me along. 

 

The Weather

I went to PT yesterday and afterward crawled into bed and cancelled all of my plans.  The weather just got to me and I was in a great deal of pain. So I went to sleep for the afternoon.  Jan came home and he also was exhausted so we went to sleep again early.  

My shoulder is moving more and I am very uncomfortable but I am hoping that soon it will hurt less and be more usable.  I feel time is running our for my recovery since I want to be back to work in 4 weeks. Thank goodness I am feeling like I am in recovery now.

It is amazing that I am not anxious about Monday’s scans.  I am just going to go with it.  But I do have a lot of questions about nutrition, vitamins, minerals, or any other holistic treatments that might add to my recovery.  I also want to know what my future visitation schedule will look like; how often will I be scanned, how often will blood-work will be done, and can the port come out?  Other than that I have a great deal of hope now that things seem to be going well.

It is ugly outside today but I need to find a way to make it a beautiful one since I was granted one more day in my life. Right now I will meditate on that one.

STAMINA

My friend Martine was driving to Passaic yesterday and offered to take me to school for a few hours.  I was thrilled to go and spent 3 hours in my classroom.  I was wiped out.  This is going to take a great deal of energy to get through a whole day with the children but I still have 4 weeks of PT and rest ahead of me. Can you tell that I am determined?  The time spent with the children was wonderful but I am still very weak.  And my arm really hinders me.

Today I will go to PT, rest, and this afternoon drive to Caldwell to get my hair cut.  If I am not exhausted, I will meet two school colleagues for dinner.  I have no plans for Thursday so it will be noted as a day of rest!!!!

Thank you for all who prayed and wished for my friend Bonnie’s scans to come clean and they did!  It was not only fantastic news for her but it also helped me emotionally to go get mine done on Monday.  Dr. Bajorin filled out my latest disability form saying I can return to work Jan 09 so I take that as good news and optimism on his part.  I will meet with him next Thursday to discuss the future of my port and treatment.  Today is my sister’s turn at hitting the doctor for information.  More prayers and kind thought abound.

A special thank you for all of my colleagues I saw yesterday at school who stopped to tell me that they continue to pray for me.  I am one grateful person.  I never could have come this far alone but with everyone pulling for me and my higher power, I just may be able to return to a life I can live comfortably. This journey has changed my life in so many ways.  I thought it would mostly be in a bad way but I was wrong.  It has made me a better, stronger, and more appreciative person than I was before.