Well the trip to the acupuncturist turned out to be a long wait and a bust. Dr. Deng just evaluated my scans and history and referred me to the accupunture practitioner whom I will meet with on Monday mornining, first appointment. In the meantime, we are trying lydocane patches on the sore area of the arm to see if that will stop the sharp pain. But so far, no change. The other medicine cocktail, although I am very off balanced and feeling drunk, has reduced the pain in the shoulder considerably. Payoffs.
When we returned from the doctor, we found that one of Jan’s clients was in from Italy and so Jan invited him to dinner. I made a lovely dinner party for the 3 of us but I left early and went to lie down. It seem to have been a success and I am vey happy I was able to do this for Jan and then crash.
In the middle of the night, there was no sleeping so I got my guest room rearranged for Rea and family who will arrive tonight. Shuie’s grandmother, a most lovely woman, has passed away in Queens. Jan and I are in charge of Yonah tomorrow during the funeral. Jan is quite excited about taking him out in his Baby Bjorn (snuggly) as he used to carry his own children.
I am going to rest and knit and pray this morning. I am hoping that this medication works and that the cancer cells will die off. I am angry I have to do all of this again but my alternatives are none. So I’m making the best of it, doing what the doctor’s tell me to do and praying my hardest that this taxol round will do the trick.
Close your eyes an feel the warmth of the sun on your face. That is my higher power’s gift for today.
It is Friday and a new day. The new med cocktail seems to be working on most of the pain and I was even able to sleep a short while on my side. But the one spot of pain, stopping me from PT persists. The meds are making me very woozy and I feel off balance but hopefully I will get used to them. In the meantime, I cannot go anywhere out of the apartment alone because I might fall. Today I am going to the acupuncturist ( Jan will take me) to see what kind of magic he can muster for this one pain spot. I am determined to solve this problem so I can get the use of my arm back.
My Dad went home yesterday and I feel like a little girl with sadness at his leaving. He was was such a calming influence for me during the day and even though we really did nothing, he was here for me just as he was when I was young. I was so fortunate to have this time alone with him. I wish it had been 10 years ago when I was well and he was younger but I am grateful for what we got. He promises that he will come back and that I am looking forward to. My sister will be coming to stay with him for a week in February also to be evaluated for cancer. He has really had a chore with the women in our family but he supports us through it all.
So for today, I am grateful for some relief from the pain, that I can dress myself easier, that the chemo has not so far had any side effects, and that I feel that I have a chance of recovery. I pray hard for the ability to emotionally withstand the up and coming treatments and hope with all of my heart to be able to return to the person I once was (close to it but much better). Thank you all for you notes and calls. They are truly the best medicine. Your energy and support is so vital to my recovery.
After 12 days, my Dad, 83 years old on Feb 6th, is going home today. He has been delightful company, never intrusive and always supportive. I will miss him so very much. Having his presence here has helped me feel calm and secure as if I were a young child again. He always was the nurturer to me when I was growing up. My Dad is so warm and outgoing that everywhere we went; waiting rooms, other’s homes and having friends stop in here, the comment always came back that the person he spoke to fell in love with him. I understand that. I have always been in love with him. I know he has reservations about going home also to an empty house now that my mother has passed away in October, but he has paperwork and doctor appointments to attend to and then he promises to back to visit. I will look forward to having him back as soon as possible.
The first chemo treatment seems to be going well. The steroid is finally wearing off and the new cocktail is helping with the pain but I am very off balance. Trade offs I am willing to try to get this body back to its former shape. Ralph, my PT, called to check on me yesterday and I am sure hoping to get back to that if we can get the pain in check. Tomorrow I go to acupuncture.
Yesterday, I acquired a new knitting partner who is knitting the tan rectangles for our afghan. She spent and hour and a half visiting with me and finished another rectangle. We now have 5. This afghan for charity will be done very quickly with all the hands that have volunteered to assist. This gives me such pleasure to do for someone else right now.
And my beautiful silver-haired friend stopped by for a visit and brought the most fantastic mandel broit (biscotti) that she baked with dates. My and Dad and I have has a ball with them. I even ate one during the night when I was up and wandering. She is such a pleasure to have for her short impromptu visits.
For today, I am in acceptance mode of what is happening to me, making the best of the situation and being grateful that Hope has returned. I have faced the chemo demon head on and so far I am coping. I am so grateful that my higher power has given me the chance to continue this fight and that I am strong enough physically and mentally for the challenge. The miracle for today is that I am feeling happy; happy to know that I have more time to live my life and enjoy my family and get well.
After being informed a few weeks ago that I would not be returning to my teaching position and those beautiful children that I so adore as well as the cancer had returned, I began to loose hope. I tried every day to get up and face the day but as you could feel from my writing this has become more difficult with each passing day. I had lost hope. I began to allow my head to go to many many dark places and cried most of the day. Most of all I feared going back into chemo and for the chances of survival diminished.
Yesterday, after meeting with Dr. Bajorin and his fantastic assistant nurse, Ann Marie (who was my chemo nurse last round), I have renewed Hope. He told me if there was no chance of getting me into remission or recovery he would no longer offer me treatment. BUT this treatment may take a very long time, not just one round. We need to kill these cancer cells as they grow and that is what Taxol does efficiently. So as long as we see they are still trying to grow, I will be taking the chemo (could be up to a year). Yes, I am going to be fatigued, gain weight, lose my hair, be tied to Sloan and away from crowds (at home), feeling sick in general, but I am willing to do all of those things with the HOPE that we can still beat this demon.
The chemo yesterday went well and I am still a little high from the steroids but it was shorter and easier than the last round. I am still in pain in the arm and we are trying another medicine cocktail for two weeks plus acupuncture and if that doesn’t do the trick, we are looking into trying a nerve block. Somehow, we are going to get rid of this arm pain so I can go to PT and rehab it. And of course not have the pain pulling me down each day.
I have finished Rectangle #3 for the afghan. I have decided that once this one is completed for charity, I will start making afghans for each of my kids so that will have a “snuggly” from MOM (Aaron still has his “manket” baby blanket although it is really is shreds). Making plans, keeping busy, being creative is really the best medicine for me.
So for today, I am so grateful for Dr. Bajorin’s reassurances that I still have a fight to fight, that the chemo went well, that I am feeling more hope than fear, and that I am able to withstand all that is happening. I am praying so hard for success in this venture and also making plans for the future rather than falling into a hole. I feel today that I am one very lucky person.
It is truly amazing what 5 steroid pills to prepare for chemo can do. There is just a little pain in the arm this morning and I am feeling more hopeful. I am actually looking forward to this first treatment so that the fear factor can be diminished. I am told that it “should” be less toxic with less sickly side effects than the last go around but time will tell. I will gain weight (at one time that would be unacceptable to me) and my hair will fall out (for this I am preparing as well as possible) but for now I will relish the ability to move a little without feeling stabbing pain while the steroid lasts. Must get the laundry folded for sure this morning. (LOL)
I spent the night, not sleeping, and moving furniture around my apartment in my head. I keep thinking that if I am housebound for another few months that I need a change. Not huge but a little different. This is a good sign; that I am hopeful. We may do nothing but throw out some things or send some things to the cape house but the brain process is working and keeping me going. Thank you General Bonnie for the idea.
Rectangle #1 is complete for the 49 rectangle afghan I began for charity. The yarn is lovely and this afghan, when complete, should weight a ton and keep someone very very warm.
For today I am praying that this new chemo, Taxol, has the ability to kill the new cells growing in my lungs or any other place we haven’t found and to find a solution to the pain in my arm so I can cope with this process. I am grateful that my Dad is still with me so I am not alone while Jan is at work. I am especially grateful and confident that I have the best physicians and medical care, in the world, at Sloan. And I have so many many people, from so many walks of life, rooting for my recovery. Pray Hard.
Sunday was a pleasant day of reading, videos and resting. I have begun a new knitting project (a patchwork quilt) for charity but I can only do a little at a time. I have had an offer from one of the knitting club members and my sister, Ellen to join me in knitting that quilt. Somehow we can pull this off.
Today is laundry and groceries. My Dad is still here and we are awaiting tomorrow’s beginning of the new chemo treatment. He has reservations about going home and leaving me as well as returning to his home alone (my mother passed away only three and a half months ago). I would love him to stay but I cannot imagine what he will do with himself everyday if I am sleeping. It is a comfort to have him around. February 6th he will be 83.
For today, I am grateful that it’s a new day, that the meds are dulling the pain enough so I can do some small things around the house, that the sun is shining (I really want to feel that on my face), and I am trying to accept things as they are at this very moment. I will spend the day periodically praying, meditating, and looking for those little miracles.
We thought we were going to our friend’s home, the Brown’s, for lunch which turned out to be a party of sorts. My favorite people were also invited and we had a wonderful afternoon. My Dad had such a good time, he even tried one of his old corny jokes. By the time we were home, I was in agony and so back to bed with the pain meds, heating pad, tears, and the wait until it all kicked in so I could sleep. It was worth it. It is such a pleasure to be in the company with those you love and trust even for a short while.
Today, Jan will work at home so I can glimpse his handsome face here and there. It is such security for me to know he is in arms reach. Dad will devour the newspapers and we will just take a restful day.
The demons are ringing in my head and I am fighting to keep them at large but I am fighting with happy memories and thoughts as much as possible. Jan even suggested that if I am still not getting anywhere after this round of treatment, maybe we should look at Dana Farber in Boston so I can be closer to the kids. I am very happy at Sloan, Praying for miracles, and not ready to start all over. Although a weekend at the cape when it gets warmer sounds fun.
Our friend’s daughter will be married in Israel in February. I wish, in my head, I could be there to celebrate this wonderful occasion with them. On the other hand, I am very aware that I don’t do well on planes for that period of time even when I am in top shape. But another busy thought.
Hopefully, sometime this week Rea will bring the baby for a visit and I can laugh with him and his toothless grin. She tells me he is really getting taller and I am so looking forward to seeing them. All my wonderful kids have called in and I adore their voices and stories. A hug would be the best medicine which they will get when I get my hands on them. I have to try my hardest not to cry when I talk with them so I really need to practice this for when I see them in person. I want to savor each moment I have with them.
Back to “the cage” (bed on back with pillows and heating pad), Wishing everyone a day of contentment, accomplishment and smiles. And keep praying for those little miracles. My miracle today was the ability to type this blog.
I am having a very difficult time trying to keep my head together and stay out of those dark places. I am thinking of the new treatment upcoming with the hope and prayers that something will take hold and stop the march of these confused cells, So far, I have had little to no relief from the radiation but the new meds do take off the edge and let me sleep. Sleep right now is desired. It gives me less time to think.
For today, Jan, Dad, and I will take it easy and have lunch at a friend’s home. I hope I have the stamina to sit still that long. I am so enjoying seeing Jan after such a busy week, Sometimes I just want to memorize his face and others just want to listen to his voice.
Shira called last night upset about some critique at work and my Mommy heart set in. I wish I could be there to hold my little girl when she hurts but I was there to listen. I know she will get over what was said to her and probably learn from it but right now I am in protective mode for my kids. These are the times that are so frustrating for me. Not only being away from the kids but also the inability to be there 100%.
So for today, I am grateful for a new day, that I will be with my husband. father and friends, and that I will nurse this arm so that it is bearable to get through the day. I wonder when the day will come when I can get through with no tears. Still trying and trying to stay in the moment.
After my visit wit Dr. Russo this morning, the cystoscope indicates that the bladder is clear of cancer and he does not need to see me for 6 months. He did discuss with me all that I have been through and what is ahead and knows that I really have a fight on my hands. But with prayers and the best doctors, we are going to continue to fight. He says the amazing thing is that after all I have been through, I look perfectly healthy. He was very careful not to give me false hope but he was also not down and out. And so now it is time to rest my shoulder and prepare for the next round on Tuesday.
Yesterday, Dr. Michael called and set me up for yet another shoulder MRI. The technitian was the worst I have ever encountered and man handled me in to the machine 7 different times until he could get it just right. It was exhausting. But that MRI should be read this morning and hopefully can tell us more about this pain. I will go to Sloan for a Cystiscope this morning and am then looking forward to a restful weekend.
We are now trying a new drug. It is an non-steroid anti-inflammatory with the hopes of giving me some pain relief. Two pills later, it seems to take the edge off but I am very dizzy. I think right now dizzy is better than pain. I would be so grateful for relief from this pain even for a short time so I can get my head together and the exhaustion in check.
I am so grateful that my Dad is still here with me. He sits in the waiting rooms and he is quiet gentle company. It is so nice not to be alone all day. I am also grateful that Dr. Michael and Dr. Bajorin continually try to get me in a place of comfort to be able to fight this disease in the best shape possible. I have a birthday coming up in February and my Dad asked me what I want. I told him I just want to turn 55! That simple. And I will be so grateful for that also.
Its supposed to be a little warmer out today and so maybe we can get out and walk and enjoy the fresh air. Wishing everyone a restful content weekend.