I went all day without the medicine patch and had tremendous discomfort. I am just not ready to do without the pain meds yet. Jan put the patch back on last night and I am feeling much better this morning.
At 8:00AM, I met my friend Gale and went to the Kosher Meat Market literally around the corner from my apartment. I have been running back to FT. Lee to my favorite meat store when we needed fresh meat. I must accept that I am living in NYC. It was good and they delivered and so I am now able to make a change. Then I hit the grocery for more cooking items.
I have been cooking up a storm all day for the Sabbath. Rea, Shuie and Yonah are coming for the Sabbath and friends/adopted family will join us for dinner. Martine has cooked her way through all the holidays so that Jan had food to eat while I couldn’t function so I am so happy they are coming and Icould feel I am giving something back. I will definately need a nap before dinner.
My hero, Dr. Zelefsky called to pay his condolences yesterday and shared how pleased my surgeons and oncologist are at my progress. It sure felt good to know that I am on the road to recovery. No promises but better. Jan continues to help me do the shoulder exercises and on Monday I will go to the PT doctor. Progress AHHHHHHHHHHHH!
Wishing you a peaceful, restful and contented weekend.
I am just taking it easy today trying to clean out a closet with one hand and doing the exercises on my shoulder. They really hurt! And trying to get some nutrition in that does not upset my stomach.
My patch fell off last night and I am going to try to go today without the narcotic. If the pain is too much, I will ask Jan to replace it tonight. I am so tired of these meds and I want to improve and to see what I can really do on my own. But I must admit, I am tired.
The cold weather was quite a shock to me. I missed spring, summer, and fall since I have literally been housebound for so long. It’s kind of funny to begin my outdoor treks just where I left off (in Feb) with the cold weather again. I do plan to walk outside again and if not, we have a gym in the building that I am going to become very friendly with in the next 9 weeks. That’s what I’ve got time wise to get back to school.
For today, I will meditate on how fortunate I am that I am recovering from this nightmare and about times with my mother. This has been a very important exercise for me. It took her dying for me to better understand who she was and why she did the things she did. But it is important for me to go through the process.
The excitement for today is that I get to take a REAL shower today which I have not been able to do for months due to stitches. I will even wash my own hair. So for that I am grateful.
The stitches came out this morning and the exercises needed to strengthen the shoulder are very painful. But the good news is that I no longer have to take the daily Fragmin shots to the stomach for blood thinning and I am off the iron pills which upset my stomach! This is progress.
While I received my chemo, my nurse, Ann Marie, was wonderful to me and knew how to access my port in the least painful way. She has now moved up to Dr. Bajorin’s offiice and so she is my contact person for questions at Sloan now. I am thrilled.
I really feel like the climb out of the hole is getting better, not easier but closer to my goal of wellness. These little things have regenerated my willingness to fight with a smile on my face.
Today the stitches come out of my shoulder. I am so happy because I know I can do more with my left arm but the stitches have confined movement. So, off to Sloan again to meet with Dr. Healey.
I slept the day away yesterday and feel I could do it again today. I know this past week has been stressful but I do worry when I sleep too much. I have a project to work on today to keep me awake. That is to find my winter clothes and a storage place for the summer ones. I am also ready to relinquish ownership to a few pairs of shoes.
Going to try to dress myself to get ready for our 9:00 appointment so this is a short entry. Wishing you a pleasant and marvel filled day. Look carefully for the little miracles.
It is pouring here in NYC but today was the last day that I sat shiva for my mother. I am comforted that I had the time to ponder my life with her and spend quality time with those close to us, but I am relieved that it is over. Due to the Jewish Holidays, it seems I have been sitting shiva forever. I was given the assignment by Rabbi Z in Passaic to spend this week finding fond or happy memories of my mother. And I have found some of them unexpectedly in places in my mind that I forgot. I guess that is what these seven days are really for. A Reassessing of the life that will now be missing in my life.
Now that the medications are in control, I am returning to a semblance of who I was before I began treatments. I am still very weak and will begin rehab of the shoulder shortly but I must gain back my energy and strength by the New Year so I can return to school. 8 weeks? I hope I can do it.
The stitches come out of my shoulder tomorrow and after hat, I am not sure what the follow-up will be. I do know that this has been an arduous journey and I am hoping the road will smooth out a little for awhile at least. I am one very fortunate person to have come so far and I know it every waking second.
I will share one miraculous moment that happened after my last stay in the hospital. My roommate was a young doctor, just married a year with a brain tumor, who lost her 6 month old pregnancy due to the treatments and illness. I was trying my hardest to dress myself and was so frustrated with the shoulder not working that I sat on my bed and cried out of frustration. This little voice came through the curtain and told me, “Don’t cry. Look at the beautiful day we were given just for today and be grateful. But also smile”. Can you imagine after such loss? I have learned so much from so many people I have encountered and as I have the strength to write more, I will share them.
So for today, even this “ugly” rainy day, smile and be grateful for this gift.
Debbi has returned to NYC after her mother’s funeral in PA, and sitting shiva with her family until Friday afternoon. She will continue to sit shiva and receive visitors:
Saturday Night, Oct 25th 7:30-9:00PM @ 160 Riverside Blvd Apt 23D (212-787-6530)
Sunday AM, Oct 26th 10-12AM @ 160 Riverside Blvd
Sunday Afternoon, October 26 3-6PM @The home of Michael Nelson 36 Westville Avenue, CALDWELL, NJ
Monday, Oct 17 AM 10-12 and PM 7-9 @ 160 Riverside Blvd.
Tuesday, OCT 28 AM, 9-10 160 Riverside Blvd
Please feel comfortable coming to pay your condolences. Debbi is recovering from surgery but is so appreciative of visitors. A special Thank You for all the cards, phone calls, e-mails, flowers and donations. Debbi reads each one with care and absorbs the kindness and warmth flowing from each and every message.
As, Jan has kept you all well informed, physically and emotionally this is one tough ride. I feel like I am finally crawling out of a very deep hole but as I near the top, it just gets more and more difficult. I will not elaborate since I can barely type with the left hand in a sling but again I want to thank everyone who has helped us along this journey.
And then the road took a wide change on Sunday with the unexpected loss of my mother. In addition to sitting shiva here, I will sit my last night, Sunday, in CALDWELL, NJ at the home of Michael Nelson, Westville Avenue across from the Women’s Center from 3PM-6PM. There will be a 4:30 Minyan as well. I thought this would be easier than dragging our long time friends from NJ into NY given parking etc.
I must admit I am living in a blur not knowing what bed I am in, where I am, and then dealing with all the emotional stuff. When I am feeling more clear, I will share more miracles I have gathered these past few weeks but for now, I will close. The morning minyan will arrive soon and I am in my nightgown.
I wish all of you all serene day with appreciation that things are the way they are supposed to be for now.
Libby Capin, Channa Libba bas Itzchak v Hinda, passed away Sunday October 19th, in Wilkes-Barre, Pennsylvania following a series of medical challenges.
We have, understandably, not written on the blog in a few days. Debbi was discharged from Sloan Kettering Saturday night. Her mom passed on Sunday morning and we naturally spent much of Sunday coordinating travel with our kids and communicating with Debbi’s father and her brother David, who lives a few short blocks from his parents’ home. The funeral took place Monday morning and Monday night began the final two days of the Sukkos Festival. Shiva, which could not commence after the funeral due to the holiday, began last night. So, this is about the earliest we were able to inform our readers.
On a more positive note, medically, I am pleased to report that Debbi is doing better. The patch has improved her quality of life. The 12.5 micrograms of Fentanyl being delivered on a continual basis seems to be enough to offset her pain completely 75% of the time and for break-through episodes, supplementing the patch with Extra Strength Tylenol seems to do the trick. Further, because the patch features a transdermal delivery, the medicine does not have to go through her stomach and as a result her bouts of nausea are much less frequent… just like Dr. Rothkopf predicted.
In preparation for seeing many people at the funeral and at the shiva who would want to give Debbi a hug for love, sympathy, and encouragement, we obtained a 6″ wide velcro strap designed for immobilizing the sholder so that friends would get the message “Don’t touch!” The strap did its trick and we found that it made Debbi more comfortable in the process. Once shiva concludes and we are back home, Debbi has to begin physical therapy and start working the shoulder joint and especially her left deltoid muscle which was detached to allow for the surgery and then re-attached upon its completion.
In blogging Debbi’s Journey, we often mention people who have a helped Debbi significantly. In this regard we extend notice and thanks to my sister-in-law Renee Buckler who arranged all catering needs for the Capin family for YomTov as well as for the Shiva in rapid fashion. Renee would humbly refuse the “thanks” but her efforts allowed Debbi to concentrate only on matters at hand and thus we offer the heartfelt Thank You regardless. And to our daughter, Rea and our PA sister-in-law, Joyce, who ran everything here in the home during the shiva week and holiday.
We just met with Aida of the Anesthesia Pain team who has alway been attentive to Debbi’s needs and has always tried to be as helpful as possible in suggesting medicines for pain relief. Based on Dr. Rothkopf’s suggestion (and also due somewhat to running out of options for trying to provide pain relief without nausea side effects), Aida calculated the equivalent performance of Dilaudid and ordered a 12.5mcg Duragesic patch for Debbi. The patch delivers appropriate dosing of Fentanyl transdermally over the course of 3 days. Thus, the patch that was just applied is good until Monday 10am. We were told that Debbi should be able to shower etc. without affecting the patch itself or its bond to her skin.
The patch is in place but it will probably be a good 7-8 hours before Debbi will feel any relief from the Fentanyl contained inside. It takes time to migrate from the reserve in the patch to the pain sensors that it will ultimately block. So now we basically wait and observe.
Having the medicine work effecitvely without nausea side effects will certainly be a kindess. Evenmore, Aida discussed the situation with Nurse Ratchett and lo and behold, Nurse Ratchett agreed with Aida’s suggestion that Debbi stay in the hospital until Sunday so that her benefit/tolerance from the patch can be assessed. Who would have guessed.
P.S. If the patch really works for Debbi, I suppose that Dr. Rothkopf will be the winner of GUESS THE DOSE!