Living at Home

Greetings Friends!
  Sorry for the delay in communicating our latest news. Although we have been planning to update the blog, most things are unchanged from the last posting, and so we have put it off. It may sound a bit macabre, but in a way we have been waiting for the next shoe to drop. Mom had a bone marrow biopsy on June 28 and the results show that cells produced in the marrow are as close to 100% donor cells as one can get. That is good news! But the best news is that Gloria is still in complete remission, and though we understand that things might change, for the time being the cancer and cellular mutant FLT3 are absent.

While we are cautiously celebrating, there are other ailments that make things a bit uncomfortable for Gloria. The biggest issue right now is a torn ligament in the area of her right ankle, which is causing pain and limits taking walks and exercising. The cause of the tear was most likely over- exuberant physical therapy.  We are not a family known for our patience, so it isn’t surprising that Gloria overdid it trying to get back her strength. Doctors appointments have been scheduled in between clinic visits to stay on top of the white counts.

In spite of the ankle pain and the "bouncing" white blood cell levels, there have been good steps forward. Gloria and Karen met Rebecca in Many to celebrate Oren's 97th birthday (!!!) and returned relatively unscathed, if you don't count the backward fall at the airport. Too bad no one can literally put his/her ass in a sling.  We had a fantastic time catching up with friends and family.

The take home message, dear friends, is that Glo is home and continuing to do well in general. She has finally made it out to lunch with friends a couple of times, and is looking forward to getting out more. Rebecca will be here for a couple of weeks in August, and if all goes well, perhaps there will be a visit to California in the fall. We'll see what the doctors say.

Please feel free to call, text, e-mail, or drop by for a visit if you would like. Support from family and friends has meant everything during the past year. Thank you again and again.

Much love,

Rebecca, Karen, Sidney, and Gloria

Home Again Home Again

So much for the Southland in the springtime. Instead, we were in the hospital for a week and a half. But fortunately things were less terrible than they could have been. The doctors were able to diagnose Gloria and the nurses were kind and gentle, per usual. It turns out that Gloria has both an infection in her colon from cytomegalovirus (CMV) and a little bit of acute graft vs. host disease (GvHD). They cause the same symptoms but require opposite treatments, which means that treating Mom over the next few months will require a bit of a balancing act. The biggest challenge is that the CMV will cause Mom's white count to fall, so it will be harder for her to get out and about and to have visitors. Plus, it is hard to know if the CMV is returning since it doesn't show up in the blood even though it is in the colon. Go figure....

Gus the dog on Del Monte Beach, Monterey, CA

In the meantime, despite the setback, we are all relieved to at least know what is going on and that it can be more or less controlled for now. Rebecca was happy to be here and help in the hospital, but now that Gloria is stable and at home, Rebecca has to head back to her job and her dog, Gus, in California. She will miss Team Gloria! But, hopefully the Louisiana trip will be rescheduled for July to celebrate Gloria's father, Oren's, 97th birthday, and they will all be reunited soon!

Lots of love and big hugs to all!

Rebecca, Karen, Sidney, and Gloria

A little setback

It is a beautiful sunny day in Columbus. You read that right, we are in Columbus. Mom was doing so well over the last few weeks - going to physical therapy, getting stronger and starting to venture a little farther from home, while tapering off of some of her medication. She was still having some issues with her appetite (go figure), but the doctors were concerned about graft vs host disease (GvHD) so on Wednesday of last week she had an endoscopy done at The James. Everything looked normal,  and she went home thinking, "I told you so". Then, things started getting a little worse. She was experiencing nausea, even more loss of appetite, diarrhea, and some fever. On Saturday, Rebecca arrived in Ohio to spend the week with Team Goldman. That night, around 4am, Gloria spiked a fever of 101.5. Following protocol, Rebecca and Sidney whisked her off to Miami Valley, where she was pricked with needles and hooked up to an IV. Once stabilized (which wasn't that hard because she wasn't really unstable, just a little shaky from fevers and lack of sleep) they shipped her up to The James in an ambulance. Sid and Rebecca followed in the Mambo Volvo post-Starbucks pit stop, and got her settled into her new digs on the 3rd floor. So far there is no indication of infection, but they suspect GvHD in the colon, so poor Gloria had to suffer a colonoscopy on Tuesday morning. She was a trooper and now we are simply waiting for the results from the colon biopsies while she gets inundated with a variety of meds, including steroids. She is trying to keep her 'roid rage under control but has mentioned strangulation of certain nurses by IV tubing, so we don't know if it is working. She is not happy about being back on steroids, and it is frustrating to feel like she is taking a couple of steps backward, but still we march on.

We are still hopeful that we will be able to make it to Louisiana this weekend to celebrate the 90th birthday of Gloria's mother, Grace. But if not, we plan to visit sometime in the near future.

Love to you all and feel free to call or send messages.

xo

Rebecca, Karen, Sidney, and Gloria

100 Days

It's time to let out the breath you've been holding in for the last few months. Yesterday, we received the results from Gloria's first bone-marrow biopsy since the stem cell transplant and - drum roll please - the results indicate there is no leukemia evident and no mutant FLT 3 cells in the bone marrow! Phew...

Upon receiving the news, Gloria and Sidney have left the Apartment and are back in Dayton - no more rented furniture and downstairs neighbors with preferences for loud techno music. So now what? Over the next few months Mom will focus on recovering from the effects of the transplant and the long-term prednisone treatment. Unfortunately, all those steroids led to some muscle and weight loss, so Gloria has some work to do on regaining weight and muscle strength. She will start physical therapy next week to get those muscles into fighting shape. During this rest and recovery phase her white counts continue to fluctuate and are on the low side so she is staying close to home while those counts start to come up.

Even though the toughest times have hopefully been put behind us, there is still a lot of healing to do. As Mom puts it, she is ready to put leukemia in a box at the back of the closet. But being home is a welcome shift and hopefully will help everyone, especially Gloria and Sidney, find a more comfortable groove (which doesn't involve techno music). And speaking of Sidney, we can't say enough about his dedication and love for Gloria. He is an amazing partner and caregiver who equally needs rest, recovery, love and support.

Again we appreciate everyone's thoughts and prayers. Keep your fingers crossed that this good news continues for Team Gloria!

Love,

Rebecca, Karen, Sidney and Gloria

Light at the End of the (Columbus) Tunnel

Things have been pretty much the same since the last update. The graft vs host disease (GVHD) has very slowly cleared, and Prednisone is being tapered down from 100 mg/day to the current 30 and will be at 10 in 10 days. Gloria should feel better after adjusting a bit.

The biggest problem with the steroid (opposite most people's experience) has been weight loss with protein deficiency. Sid is on top of that with his thoughtful grocery shopping (which always includes at least one surprise treat just for taste).

We are getting close to the 100 day milestone, and the plan is to have the bone marrow biopsy on March 14.  Following that oh-so lovely procedure, we hope to leave The Apartment and Columbus behind and go home!  Meanwhile, if you have any extra energy, love and prayers to send after all this time, March 14 would be the day to send some hope for continued remission.

Big news from Team Goldman: Rebecca has arrived in Monterey, California to start a new chapter in her professional life.   We know she'll be a huge success.

As always, we treasure the support and love from our family and friends. That's what keeps us going.  Thank you for being part of our lives.

Bone Marrow Biopsy Delayed...

Hello everyone,

Gloria was readmitted to The James this past Saturday, due to a complete loss of appetite, related GI problems, and a low grade fever.  Acute Graft vs Host Disease (GVHD) was suspected and confirmed following a sigmoidoscopy and biopsy.  Gloria declined to be sedated during the procedure so she could watch it live.  Although she has always been a bit modest and was not thrilled to have a room full of people viewing her nether regions, she remembered the wise words her former mother in-law had once said: "Nervous?  What makes you think your asshole is so special?"

Gloria has been given large doses of steroids, IV fluids, and assorted other medications.  Her sister Rebecca was here to experience the mild bouts of "Roid Rage" that followed (which mainly meant she was making comments about the ridiculous, horrifying women on television). Niece Erin also made it down from Chicago for a brief visit, and all of them enjoyed spending time together, despite their surroundings. 

Hopefully Gloria will be back in The Apartment tomorrow, and Sidney will return to his caregiving duties.  Her GVHD should be more manageable, but she will be once again severely immunocomprimised due to the steroids and some other meds.  The nurse practitioner has placed her back under lockdown, so no more excursions for a while.  In  the meantime, Karen is asking her for help with her latest jokes, trying to keep her laughing. 

Of course, we can't thank you enough for all the kind thoughts, cards, letters, comments, pictures, and prayers.  We love you all. 

Happy almost Mardi Gras,

Karen, Rebecca, Sidney, and Gloria

Progress!

Gloria has gained a whopping 0.5 lbs! Ok, it doesn’t sound like much and it wasn’t what her doctors had hoped for (they were pushing her to pack on 4 lbs in 5 days - seriously???), but it meant that she is on the right track and we are happy for that news.

Ok, that is all true, but the REAL progress is this: Gloria’s cells are 100% donor cells!! That’s right folks, if she wanted to she could probably rope a steer at the Salinas Rodeo and surf at Maverick’s.  This “engraftment” happened sooner than anyone expected, reinforcing Gloria’s image as an overachiever.  Now what does this mean you ask? Well, it means that Mom is making great progress and that things are moving forward. It also means that she is at risk for acute GVHD (Graft vs. Host Disease). This is when the graft cells (surfer-cowboy) attack the host cells (mom) and can cause some yucky side-effects, which can be controlled by steroids but needs to be caught before it gets out of hand.  So, it also means that we are on the lookout for any signs that the GVHD is getting out of control. So far so good - that patch of rash on her neck isn’t getting any bigger. The next big hurdle is the bone marrow biopsy, which is scheduled for February 4^th, around the 60^th day post-transplant. This will let us know whether Gloria’s FLT-3 leukemia has relapsed or not. Fingers crossed that the combo of her previous chemo treatments and engraftment of the surfer-cowboy cells are keeping it at bay for good.

Meanwhile, life ebbs and flows at The Apartment. Rebecca returned to British Columbia last week but keeps tabs on things through Skype, email and phone calls. Karen and Sidney are taking turns entertaining Mom in their own styles. Wonderful sister and Aunt Becky visits from Louisiana on Wednesday January 30^th, and everyone is excited for her visit.  

As always, we appreciate your prayers, letters, calls and emails!

Love to all,

Rebecca, Karen, Sidney, and Gloria