Journal

Journal entry by Barb Ward Smith

Hi all! Had the opportunity to be with Gayle for chemo #4 last week, and, also hung out for a couple days, so... thought I'd journal an update. 

A CT scan was done the week of 4/9, and the results are encouraging. The tumors have not grown!! There wasn't an indication of shrinkage (yet??), but, at Gayle's appointment with Dr. Koontz on 4/16, he was excited that her lung sounds were MUCH better. And... in his words, "there's more room for air in there!"  If there is some good news to be had, this would be it!!!  We'll take it!

Gayle has been able to ditch the lung drain, and has a new port for treatment access.  The soreness from the drain site, and, now, the port install, and the horrid itch she had from allergies to some meds, have improved, and she is healing.  She is grateful for that, indeed. Her breathing has improved along with the all round healing. She still says "ouch" with needle sticks to access the port for treatment, but realizes the importance of long term, good quality, easy to live with, access methods... and will learn to love that port, as chemo cycles continue.

As anticipated with Gayle's chemo cycles (every two weeks), chemo day, and the day after chemo, and the second week... after chemo, are usually really good. Feeling better, with some energy! Days three and four, and probably five, can be really tough, as steroid pre meds from chemo day wear off, and chemo side effects kick in.  Gayle has been fitted with a Neulasta Onpro after each chemo treatment.  It is an amazing little gizmo that injects a white blood cell booster, 27 hours after chemo. This is vital in helping Gayle stay on schedule with chemo cycles, and that will be extremely important for this battle in the months to come. Even the  Neulasta is not without side effects, and she finds herself mucky through those as well.  She is getting iron infusions mid cycle to build her red cells. Cancer treatment is a real roller coaster, for sure. Kill the cancer, without slamming the whole patient to bits!! Good days, and not good days, and REALLY not good days!!  Those that have traveled this road are encouraging Gayle to find the balance that works best for her, and to learn when she needs to STOP, rest and regroup, saying "No, I better not", no matter WHAT is going on with her tribe.  Being the force of nature that she is, this has proven to be a strange, frustrating and difficult new reality.  She is figuring it out, day by day. 

Many, many thanks to all for bringing food and helping with day to day support.  Please be sure to label (your name and what the food is...) and date the fabulous goodies that are going to Gayle and Pete's frig.  That would be a big help. And... please double check before you come to visit, so that your generous and thoughtful  "time with Gayle" isn't met with Gayle not being home.  Chemos, doctor appointments, and such, may be subject to change, and, inadvertently, are not getting changed on the website calendar. It is a big challenge trying to keeping up with it all. (Thank you Andrea!!)   So far, chemos have been on Mondays.  Also, it would be awesome for someone to be checking on our girl on those tough days of her cycles, when no one is staying with her during the daytime. She may not be able to visit because she doesn't feel good, and says she doesn't need a babysitter... but still needs to be looked after, all the same.  Bring a book to read, or a movie on your device, or contribute to the house keeping effort, while she is resting.  It ALL helps!!!  Again, thank you!!

Here's to the good fight... and for "more room for air" in those beautiful lungs!!! Bless you all!!   Barb 

 

  

     
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Journal entry by Barb Ward Smith

Hello to everyone!!! Many thanks for all the love and help!! 

This morning Gayle is scheduled to have a port placed. Having a well functioning port for chemo, or blood draws, is amazingly helpful. It is an important tool for management of treatment and overall comfort.  She will also have an iv iron treatment sometime this week. Chemo #3 next Monday and then later, a CT scan to evaluate how the chemo is working. 

At this point, Home Health nurses and PT still come to the house. When ever you are with Gayle encourage her the complete breathing exercises and walking. 

It is truly awesome how so many are wanting to help. Thank you, thank you, thank you!!!  The hope is, of course, that Gayle will be able to manage mostly on her own, down the road. She has always been extremely independent and it is humbling for her to witness how friends and family are pitching in to help. There are definitely things we all can help with, and will need to continue to monitor in the weeks ahead..., and there are things that are more complicated and personal.  You’ll have to decide with Gayle what works best for you.

Coordinating everyone’s efforts is the key. If you can think of one area you are most able to monitor and keep up with, then collectively this team of friends and family will be able to buoy up Gayle and Pete for the long haul. We posted a white board on the service porch wall that might be helpful, so everyone can see what is being coordinated. And then there is the planner that is part of this site. 

One thing that could be someone’s chore... for instance...  would be monitoring how long food is left in the frig. Another..., sharing vacuuming. Andrea is interested in managing the yard as best she has available time for. Jess has tried to organize Gayles meds. Someone can oversee that the O2 tanks are in good supply. Pete takes Gayle to appointments. Someone can regularly review appointments that are scheduled with Gayle. That aspect can get confusing and overwhelming, especially when you don’t feel good. Holly and Carol straighten and organize, and Holly brings kindling for the wood stove. Myla takes Lucy to the dog park. You all bring food, visit and help. It’s all so amazing.  

Ongoing efforts to control critters with bug eyes and cute ears will be important. So if you are visiting, and Gayle is up for it, pick a spot that needs organizing and give it a go. Eliminate the hiding places where you can. This chore will be ongoing. 

Right now, Gayle is really bummed about her hair. Having been through this hair loss I know how stressful it is. She seems to be apposed to a wig, opting for hats and scarfs. But I will tell you from personal experience that putting on a wig that mimics what you had is kind of magical and really helps you feel more yourself. My hope is that Gayle will explore the wig idea, if anyone can get with the local Cancer Society on this, and see what they can provide. 

Again, everyone’s help is so appreciated. The long haul will be a roller coaster and having such great support will be priceless. It takes a village. I will be back down in April, for a couple days. Then probably a week in May. Sadly, living twelve hours driving time away does have disadvantages, especially right now. Making those of you that have a hour here and there, that are local, so wonderful.  Blessings on you all!! 

That’s it for now! All my love!  Barb

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Journal entry by Andrea Linneman

Hi all! As you may know, Gayle has been home from the hospital for a week now! Although she was a favorite of everyone during her stay and very well taken care of, she is thankful to be home and in her own bed. She will continue with chemo every two weeks on Mondays. As she learned after this last round, the day after chemo tends to be a breeze, as steroids are given along with the chemo! Gayle was like the energizer bunny for a full 24 hours, and then came to a screeching halt on day 3 and slept all day! She continues to smile constantly and looks amazing! Although  completely independent and very insistent that she doesn't need to be "babysat", we are hopeful that we can all take turns visiting on a daily basis, just to make sure that the little things are being taken care of; medication taken, oxygen tanks delivered, PT goes smoothly, Gayle does breathing and other exercises and gets out of the house for a few field trips! We have added daily visits to this website so that we all have time with her, but don't overwhelm her ( or Pete, who tends to get anxious if there are too many women in one room) by all showing up at once. Although we have indicated specific times, these are just guidelines and anyone that signs up for a morning or afternoon visit can connect with Gayle to discuss specifics.  I have also added additional dinner deliveries to the calendar. Gayle has the best attitude in the world, and we are confident that together we can get her though this! :) 

Journal entry by Andrea Linneman

As many of you know, Gayle has been in Monterey Community Hospital since Monday of last week - 2/26. Since last October, she has been dealing with a sarcoma that has metastasized to her lungs. Unfortunately, there are not a lot of treatment options for this particular type of cancer. She has been on a regimen taken in a pill form that the doctors were hopeful might shrink the tumors, but a recent scan found that the tumors had grown significantly. At the same time, Gayle started having shortness of breath and when she was admitted to the hospital, doctors also found a pulmonary embolism as well as fluid surrounding her lungs. She was given a blood thinner that effectively dealt the embolism and has had a surgery to try to negate the fluid. She also started chemotherapy this last Monday. She's had numerous ups and downs but has been unfailingly cheerful and funny; the same old Gayle. The outpouring of love and support and offers to help has been tremendous... Gayle is truly much loved in this community. Jess and I thought it might be easiest to use this website to help organize the offers for help, and so that Jess and hopefully Gayle herself can provide regular updates to everyone. I'll be attempting to implement the calendar so that you can sign up for dinner deliveries for Pete (we can't forget about Pete!) and when Gayle comes home, for both of them, as well as for other ways we can support them. We are open to suggestions... contributions towards house cleanings, help with the horses, help in the yard, etc.  Other ideas?  I'll let Jess jump in with additional information, but we both wanted to thank you for the prayers, good vibes, friendship and love you have been sending to Gayle. She's definitely got the biggest fan club in Carmel Valley and beyond!  Cancer journey's are so unwanted, but we appreciate you helping her to fight this and for making her road just a little easier. 
Gayle’s Story

Site created on March 7, 2018

As many of you know, Gayle has been in Monterey Community Hospital since Monday of last week - 2/26. Since last October, she has been dealing with a sarcoma that has metastasized to her lungs. Unfortunately, there are not a lot of treatment options for this particular type of cancer. She has been on a regimen taken in a pill form that the doctors were hopeful might shrink the tumors, but a recent scan found that the tumors had grown significantly. At the same time, Gayle started having shortness of breath and when she was admitted to the hospital, doctors also found a pulmonary embolism as well as fluid surrounding her lungs. She was given a blood thinner that effectively dealt the embolism and has had a surgery to try to negate the fluid. She also started chemotherapy this last Monday. She's had numerous ups and downs but has been unfailingly cheerful and funny; the same old Gayle. The outpouring of love and support and offers to help has been tremendous... Gayle is truly much loved in this community. Jess and I thought it might be easiest to use this website to help organize the offers for help, and so that Jess and hopefully Gayle herself can provide regular updates to everyone. I'll be attempting to implement the calendar so that you can sign up for dinner deliveries for Pete (we can't forget about Pete!) and when Gayle comes home, for both of them, as well as for other ways we can support them. We are open to suggestions... contributions towards house cleanings, help with the horses, help in the yard, etc.  Other ideas?  I'll let Jess jump in with additional information, but we both wanted to thank you for the prayers, good vibes, friendship and love you have been sending to Gayle. She's definitely got the biggest fan club in Carmel Valley and beyond!  Cancer journey's are so unwanted, but we appreciate you helping her to fight this and for making her road just a little easier. 

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