04/10/2023
ZebraHiking
Hiking the world with my zebra pals in mind. Building hope and awareness for those living with Neuroendocrine Cancer. There IS life after diagnosis!
04/10/2023
01/03/2023
๐ง๐ข๐ง๐๐ ๐ฃ๐๐ฅ๐๐ก๐ง๐๐ฅ๐๐ ๐ก๐จ๐ง๐ฅ๐๐ง๐๐ข๐ก ๐๐๐๐โฃ
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Tip #1: Donโt be like !!!!!โฃ
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I had a good laugh at my first forty-eight hours at home with a TPN line. โฃ
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I didnโt realize that I had โlocked myselfโ into my nightgown when I connected my IV until I tried to remove the silly gown for my shower!! ๐๏ธ๐ โฃ
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No problem! The pump makes an excellent nightgown stand, as well!!โฃ
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**kcancer โฃ
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09/24/2022
๐๐๐๐งโ๐ฆ ๐ง๐๐๐ ๐๐๐ข๐จ๐ง ๐ฆ๐๐ซ, ๐๐๐๐ฌโฆโฆโฃ
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๐๐ฆ๐ต'๐ด ๐ต๐ข๐ญ๐ฌ ๐ข๐ฃ๐ฐ๐ถ๐ต ๐บ๐ฐ๐ถ ๐ข๐ฏ๐ฅ ๐ฎ๐ฆโฃ
๐๐ฆ๐ต'๐ด ๐ต๐ข๐ญ๐ฌ ๐ข๐ฃ๐ฐ๐ถ๐ต ๐ข๐ญ๐ญ ๐ต๐ฉ๐ฆ ๐จ๐ฐ๐ฐ๐ฅ ๐ต๐ฉ๐ช๐ฏ๐จ๐ดโฃ
๐๐ฏ๐ฅ ๐ต๐ฉ๐ฆ ๐ฃ๐ข๐ฅ ๐ต๐ฉ๐ช๐ฏ๐จ๐ด ๐ต๐ฉ๐ข๐ต ๐ฎ๐ข๐บ ๐ฃ๐ฆ! ๐โฃ
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S*x is difficult enough to talk about on a good day but add some cancer in the mix and it can be really tough to start the conversation!โฃ
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We secretly like it. We want more of it. Itโs an integral part of a healthy relationship. And just when we are finally comfortable within our bodies, we are finally feeling confident, BOOM.โฃ
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Breast cancer is especially difficult, as are all of the female reproductive cancers. Drugs, surgeries, chemo, radiation, medical trauma, the indignity of being a cancer patient with all that may entail, can rob us of our libido, and our bodies own sexual responses. S*x can now be very painful. Excruciating even. Our newfound confidence that comes with time has now disappeared. We may feel the unsexiest we have ever felt in our lives.โฃ
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There is hope but it requires TALKING ABOUT S*X with both our partner AND our medical team.โฃ
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What can be done? This will be a bit breast cancer and female reproductive cancer focused. Hormones are now in upheaval! Those lovely hormones that helped us be ready for knocking boots with our cutie pie no longer exist to do their job! โฃ
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There are three issues in my mind. 1) systemic dryness, 2) thinner, more delicate vaginal walls, and, 3) pain.โฃ
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Look for products that are as simple and pH neutral as possible. DISCUSS WITH YOUR DOCTORS FIRST!โฃ
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For 1) you must moisturize!! A few times per week apply a moisturizer meant for vaginal use. Replens has one, pure Vitamin E oil, hyaluronic acid suppositories, or a compounded prescription from your gynecologist. No added ingredients - we want to preserve the natural pH!โฃ
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For 2) think lubricants! รberlube, Hyalofemme, and Revaree are all recommended but do your homework. Learn which type is best for different situations. โฃ
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For 3), and this may be be life changing! Use lidocaine gel before the actual ravishment! Your partnerโs performance will not be affected but youโll be more comfortable.โฃ
Seek out a pelvic floor physical therapist. After children, pre- and post- menopause, these professionals can offer much help.
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Now, go talk about sex!!โฃ
09/15/2022
๐ฆ๐ฝ๐ฒ๐ฎ๐ธ๐ถ๐ป๐ด ๐ผ๐ณ ๐ง๐ฟ๐ฎ๐๐ฒ๐นโฆ..โฃ
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๐๐ฎ ๐ฉ๐ฌ๐ค ๐ฎ๐ค๐ช๐ฃ๐๐๐จ๐ฉ ๐๐๐๐ก๐๐ง๐๐ฃ are very interested in Japanese culture.๐น The older one has applied to a university in Japan, in hopes of an immersive language experience. He was previously accepted but denied a Visa due to Covid restrictions. We are hoping it all falls into place for the next semester.โฃ
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Both boys study Japanese. The older one previously worked with a tutor and now helps the younger one in his self-study. The boys, having been homeschooled in the past, view self-education as a natural extension of childhood curiosity. If something interests them then they find resources and start learning!โฃ
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When the youngest sonโs school offered a trip to Japan ๐ฏ๐ต in June of 2023, we jumped on board! He and I will both be going for a nine day tour. We will spend three days in each of Tokyo, Kyoto, and Hakone. ๐ฏโฃ
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As they research customs and etiquette, I made my cultural contribution by ordering a monthly subscription for a tea, sweets, and snack box. Yum!!! I think? ๐ค๐ก๐โฃ
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My youngest and I will have a very Westernized version of a Japanese tea ๐ต ceremony tonight in honor of the full moon we just missed. (I was on fly fishing in Idaho where I had a beautiful view of the full moon.) โฃ
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Traveling while in treatment for cancer takes a great deal of logistical planning for emergency contingencies. Travel insurance, emergency transportation home, getting medically necessary items into a foreign country. All of these things take much research. โฃ
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Iโll be seven months post-PRRT (targeted radiation) for Neuroendocrine Cancer so should be in great shape for a big trip! And, BONUS, I will no longer be radioactive! โข๏ธ (Recent radiation treatment can cause alarms to go off when you travel internationally. You know, nuclear arms, and all.)โฃ
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โ๐๐ค๐ข๐๐ฉ๐๐ข๐๐จ ๐ฎ๐ค๐ช ๐ฌ๐๐ก๐ก ๐ฃ๐๐ซ๐๐ง ๐ ๐ฃ๐ค๐ฌ ๐ฉ๐๐ ๐ซ๐๐ก๐ช๐ ๐ค๐ ๐ ๐ข๐ค๐ข๐๐ฃ๐ฉ ๐ช๐ฃ๐ฉ๐๐ก ๐๐ฉ ๐๐๐๐ค๐ข๐๐จ ๐ข๐๐ข๐ค๐ง๐ฎ.โโฃ
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09/12/2022
๐ง๐ฅ๐๐ฉ๐๐, ๐ฃ๐ฎ๐ฟ๐ ๐ฎโฃ
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๐ ๐ง๐๐๐๐ฃ๐ฉ๐ก๐ฎ ๐๐ฅ๐ฅ๐ก๐๐๐ ๐๐ค๐ง ๐๐ฃ๐ ๐ฌ๐๐จ ๐๐๐๐๐ฅ๐ฉ๐๐ ๐๐ฉ ๐ wonderful weekend program for Breast Cancer survivors. provides healing outdoor retreats for women with , at no cost to the participants. CfRโs retreats offer opportunities for women to find inspiration, discover renewed energy for life, and experience healing connections with other women and nature. All while learning to fly fish!โฃ
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The CfR for East Idaho is held at the Living Waters Ranch about an hour south of Salmon (where my Mom lives) along beautiful Garden Creek just outside Challis. I was happy to be accepted as an alternate and absolutely stunned when I got the call inviting me to participate! Happily, Mom and her beau, were more than happy to have me visit for a week before the retreat!โฃ
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We gathered on Friday evening. Fourteen strangers coming together to share very intimate details of our lives with each other. Details we may not have spoken of to anyone else. No ice breaking activities needed with this wonderful group of women!โฃ
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By Saturday morning we were down to twelve women due to health concerns for two. Friendships were already forming and a sense of community, as well. Our hosts taught us to tie flies, cast, how to know which flies to try, how to put on waders, how to stay safe while enjoying a day of fly fishing. We encouraged each other, laughed, cried, celebrated, learned. It was truly turning into a magical weekend!โฃ
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Sunday, we gathered around an early campfire and ceremonially cast our cancer fears into the river and our hopes and dreams to the heavens. At breakfast we met our personal guides for the day and planned our fishing.โฃ
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We fished a pond in Challis where Deb from Pocatello promptly landed two fish! Game on!! We eventually moved to a pond at Living Waters where we finished out our fishing adventure. I may have caught the largest (definitely debatable) but celebrating everyoneโs successes was the point of the whole weekend! โฃ
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It truly was a magical retreat where lifelong connections were made! I am stronger today because of these wonderful women!! Thanks to CfR East IDAHO for EVERYTHING! ๐๐โฃ
09/12/2022
๐ง๐ฅ๐๐ฉ๐๐, ๐ฃ๐ฎ๐ฟ๐ ๐ฎโฃ
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๐ ๐ง๐๐๐๐ฃ๐ฉ๐ก๐ฎ ๐๐ฅ๐ฅ๐ก๐๐๐ ๐๐ค๐ง ๐๐ฃ๐ ๐ฌ๐๐จ ๐๐๐๐๐ฅ๐ฉ๐๐ ๐๐ฉ ๐ wonderful weekend program for Breast Cancer survivors. provides healing outdoor retreats for women with , at no cost to the participants. CfRโs retreats offer opportunities for women to find inspiration, discover renewed energy for life, and experience healing connections with other women and nature. All while learning to fly fish!โฃ
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The CfR for East Idaho is held at the Living Waters Ranch about an hour south of Salmon (where my Mom lives) along beautiful Garden Creek just outside Challis. I was happy to be accepted as an alternate and absolutely stunned when I got the call inviting me to participate! Happily, Mom and her beau, were more than happy to have me visit for a week before the retreat!โฃ
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We gathered on Friday evening. Fourteen strangers coming together to share very intimate details of our lives with each other. Details we may not have spoken of to anyone else. No ice breaking activities needed with wonderful group of women!โฃ
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By Saturday morning we were down to twelve women due to health concerns for two. Friendships were already forming and a sense of community, as well. Our hosts taught us to tie flies, cast, how to know which flies to try, how to put on waders, how to stay safe while enjoying a day of fly fishing. We encouraged each other, laughed, cried, celebrated, learned. It was truly turning into a magical weekend!โฃ
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Sunday we gathered around an early campfire and ceremonially cast our cancer fears into the river and our hopes and dreams to the heavens. At breakfast we met our personal guides for the day and planned our fishing.โฃ
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We fished a pond in Challis where Deb from Pocatello promptly landed two fish! Game on!! We eventually moved to a pond at Living Waters where we finished out our fishing adventure. I may have caught the largest but celebrating everyoneโs successes was the point of the whole weekend! โฃ
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It truly was a magical retreat where lifelong connections were made! I am stronger today because of these wonderful women!! Thanks to CfR East IDAHO for EVERYTHING! ๐๐โฃ
09/08/2022
๐ง๐ฅ๐๐ฉ๐๐, ๐ฃ๐ฎ๐ฟ๐ ๐ญโฃ
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My plans to spend my summer in Idaho were changed by my treatment plan for Neuroendocrine Cancer. A short trip was doable, however! โฃ
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I began targeted radiation in April and am scheduled to finish up around Thanksgiving. I have had the unfortunate experience of a few setbacks which have left me with no appetite or energy. The loss of appetite, dehydration, and chronic infections that Iโm trying to get a handle on, have made walking a moderate distance quite challenging. This hiker hasnโt hiked in months! Or even walked my dog.โฃ
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Doing ANYTHING that requires a bit of exertion has been sending me into Carcinoid Syndrome and, occasionally, the more severe Carcinoid Crisis (carcinoid crisis is a potentially life-threatening complication of carcinoid syndrome). My doctors increased the dosage of a self-injected โrescue shotโ called Octreotide. I now take two injections daily but if I have a bad episode then I will have to give myself 3-5 more. Carrying enough injections with me (they must be refrigerated) can be a logistical nightmare! I planned to be gone almost 2 weeks. That means 28+ shots to lug around! Hauling luggage or shots through an airport was just NOT going to happen.โฃ
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The airline came to my rescue. They advised I label my cooler of injections as โMedical Equipmentโ. Medical equipment does not count against your carry-on limit! They also arranged a wheelchair gate to gate for my flight๐. Other than cancelling my first flight, costing me a two day delay, the airline took very good care of me! It was very comforting knowing my rescue shots were nearby during a stressful travel day.โฃ
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Medical Equipment stickers and badges are available online. They will search the contents so no cheating!! ๐งhis is a great way to have your medically necessary items near you without giving up space for an overnight bag or purse. Iโm a HUGE advocate of walking as far as one can every day. I have found, rather suddenly, that can change very quickly when you are battling cancer! โฃ
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๐๐๐ช๐๐ฌ๐ฆ ๐๐ผ๐ฟ๐ธ ๐๐ถ๐๐ต ๐๐ผ๐๐ฟ ๐ฐ๐ฎ๐ฟ๐ฒ ๐๐ฒ๐ฎ๐บ when planning vacations during active treatment for cancer! โฃ
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๐ฃ๐ฎ๐ฟ๐ ๐ฎ coming soon
07/24/2022
๐๐จ๐๐๐ฌ exploit the good days!!!!โฃ
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06/28/2022
๐ง๐๐๐๐ก๐ ๐๐๐ฉ๐๐ก๐ง๐๐๐ ๐ข๐ ๐ ๐ง๐ฅ๐๐๐ง๐ ๐๐ก๐ง ๐๐๐๐๐ฌโฃ
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Most NET patients have been aware of the manufacturing issue with Lutathera in May. The trust we have had in our Big Pharma partners has been tarnished by the experience.โฃ
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Itโs been worse for those NET patients who were left without their first treatment, in my opinion, than those of us who were mid-treatment when the manufacturing delay hit. They were hit with, perhaps, having to come up with an interim treatment plan until the issue was fixed. โฃ
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But those of us mid-treatment were given an opportunity. We were already reaping the benefits of PRRT, and those benefits were still beneficial during our wait. It didnโt really affect our long-term outcome. It did, however, give many of us an opportunity to plan some adventures with our loved ones!โฃ
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I took a long weekend to visit old friends who just moved within visiting distance of me. We had a great time exploring Fredericksburg and San Antonio, Texas. โฃ
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Next came a couple days at Hope Lodge for my monthly SSA shot, labs, and meet and greet with my oncologist. Things seem to be looking good, so far!! ๐๐ผ๐ค๐ป๐โฃ
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Next, my niece flew into DFW to attend a medical conference and both learn about Dravetโs Syndrome AND earn some CEs for her nursing career. We spent time exploring Fort Worth and Waco with the additional days on either end of her conference. โฃ
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Now Iโm home enjoying my kids and planning our next adventures during this extra month of fairly good health and energy! My youngest is dying to try his hand at deep sea fishing. Iโd like to kayak some of the easier lakes in our new home state. โฃ
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The boat is chartered and a beach house is rented for next week. Iโm currently studying lakes for kayaking! Hoping for a few fun one-nighters thrown in, too! โฃ
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Sometimes it pays to know how to make lemonade!! ๐โฃ
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06/06/2022
Why a NET patient with CS should ๐ป๐ผ๐ be in charge of the grill!!! ๐ฝ๐งป๐๐ฅ๐จ๐ผโ๐โฃ
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06/04/2022
๐๐๐๐ ๐๐จ๐ฃ'๐ฉ ๐๐๐ค๐ช๐ฉ ๐ฌ๐๐๐ฉ๐๐ฃ๐ ๐๐ค๐ง ๐ฉ๐๐ ๐จ๐ฉ๐ค๐ง๐ข ๐ฉ๐ค ๐ฅ๐๐จ๐จ,โฃ
๐๐ฉ'๐จ ๐๐๐ค๐ช๐ฉ ๐ก๐๐๐ง๐ฃ๐๐ฃ๐ ๐ฉ๐ค ๐๐๐ฃ๐๐ ๐๐ฃ ๐ฉ๐๐ ๐ง๐๐๐ฃ.โฃ
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๐๐ค๐ซ๐, ๐๐๐ง๐๐โฃ
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๐๐๐ง๐ฆ ๐ข๐ ๐๐๐ก๐๐ก๐๐ฆ๐ฆ are so very much appreciated when we are feeling a bit out of it! Many treatments for cancer can leave one feeling pretty tired and achy. Nerves can be affected, joints can be very painful, our psyches may suffer. โฃ
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This is when an act of kindness means the most. When a friend can sense you may need a pick-me-up. โฃ
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Iโve been really tired lately, normal for my current treatment plan. Iโve had little guilt about binging Netflix this week because I know to listen to my body. But it can sometimes feel endless when youโre in the midst of those times. And itโs normal for a bit of self pity to creep in when you know this is likely the BEST youโll feel for most of 2022. (Effects of some treatments are accumulative.)โฃ
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But all that heaviness of spirit can be instantly remedied by an act of kindness being bestowed upon you!โฃ
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Thank you ๐ฆ๐ข๐ข๐ข๐ข much for the beautiful bouquets you surprised me with today!!! You brightened my day, week and month so very much!! Friendships going back to high school are the best!! โฃ
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Oklahoma City, OK
10/17/2022