Over the past couple of years, I have been in the process of finding a program through which I could “Give Back” with my new skills and talents of helping others through their own treatments. In March of 2017, I found an official mentoring program for my then amateur efforts to help others going through chemo and other cancer related angst. It was late that month that my nurse navigator, Julia, at Frankfort Regional Medical Center put me in contact with Friends For Life Cancer Support Network. Life kept happening, over and over again, slowing the process. That was the year of fingernail infections and C.diff, death of my grandfather, time really well spent with my grandmother, and sending my youngest off to Kindergarten. It took me 7 months to complete a detailed but easy application. Finally in mid-November I submitted my application, received a request for an in-person or over the phone interview, and then completed the in-person interview with Judy and Nicole (both amazing women). I viewed the online training videos, then completed the in-person Volunteer Training in March of 2018. In 2016, I was referred to Friends for Life.
I completed the application process in November of 2017, once I was more stable and felt I could take on a heavier more professional mentoring role. I was interviewed and screened, then invited to become a Peer Navigator/Peer Mentor. I completed training in Louisville with the March 2018 class.
I have also been able to be a reference for a couple of friends who felt they could help as well:
Your friend recently participated in online training to become a Friend for Life Cancer Support Network Peer Navigator. In that role, your friend will serve as an empathic, compassionate sounding board, encouraging others currently facing a cancer diagnosis similar to what your friend experienced.
The ideal Peer Navigator is someone who is self-motivated and responsible, an attentive listener who is considerate and respectful of others. We require prospective volunteers to complete a professionally directed training program before undertaking their role. Peer Navigators function largely on their own, with minimal direct supervision.
With these points in mind, would you please complete and return the enclosed “Personal Character Reference” at your earliest convenience? Your response is an essential part of our consideration.
Fast forward a couple of years….sorry, I haven’t been visiting my blog much in the last year. Things with family became the priority, they always are, but now I am healed and physically healthy enough to get back to “normal”. The chaos of a mother of 5 has resumed.
I am now serving as a trained Friend For Life Cancer Support Network, Peer Navigator and Mentor. I have been assigned to several women over the past couple of years. Most of them within the last year and a half since my own DIEP flap reconstruction. It seems I am the authority within the Network on this as well as coping through reconstruction, failed reconstruction, and then moving forward after that. This reminds me of those statements some of us tell ourselves, “Never in my life did I think I would ever be THE go to person for…”. It has been extremely fulfilling to be able to Make CANCER help me GIVE to others. Even better, it has been emotionally and spiritually healing to be able to serve others in these ways. Using my God-given talents and my 2 years of college education, combined with the wonderful training provided by my FFL leaders, to guide and counsel with others coming up to this trial next.
I have also found joy in doing data entry in office for the FFL staff on occasion. I look forward to each of our training sessions and every opportunity I get to spread the word about FFL to those in my geographical area.
I have been privileged to speak to University of Kentucky 1st year medical students, present information at a table during the pre-party at Party in Pink at Paristown, set out brochures/flyers at several of my own physicians offices, and this coming week I will be representing FFL and LBBC at my own local library for an event I have planned there. Next week, I will be involved in an annual session with University of Louisville medical students. FFL Volunteers share the realities of coping with cancer diagnosis and treatment – physical, emotional and practical issues – with students and faculty mentors. The intent is to encourage empathy, explore effective patient-physician communication and ultimately, overall quality of care. Then in March, comes the yearly live training session for new and current FFL volunteers.
So, yeah, I am helping where and when and how I can! And loving every minute of it. If you have been a cancer patient or caregiver to a cancer patient and you feel like you could handle being a listening ear and support for another walking in those same shoes, please give me a shout or follow the link above to FFL’s website and sign up. We are always looking for more volunteers, the more we have the more closely matched each support seeker can be. All types/stages of Cancer, all localities, one-to-one mentoring by phone, text, email, or messenger. If you are in those shoes right now and want a peer navigator and mentor, same, reach out to me or the FFL staff through the link above.
As I awake from a late afternoon nap, realizing I slept for 3 hours on the couch while my boys watched TV and played video games, I feel refreshed but wonder what I had done to cause me to be that tired. Hmmmm, weird. Oh well, the boys were well behaved and are playing nicely with toys now, about to head outside now that I’m awake (house rules). I remind them to grab jackets, and let them know I’ll call them in once dinner is ready. I then turn back to the kitchen, start to load the dishwasher, then go in the living room and start to declutter my computer desk, then I remember a phone call I need to make before 6pm. Phew its only 5:30pm. I dial the number, then walk a few steps away from the desk, then a few steps back trying to remember why I had to go back. Oh yeah, I need that paper with me when I finally speak to someone. Then back towards the kitchen, looking at the dishwasher door I left standing wide open, having walked away after only putting a few dishes in. No one is picking up on the other end of the phone, so I redial, then walk to the living room, stand there trying to remember why I went back in there, shake my head, and walk back to the kitchen. I finally get through to someone on the phone, get that bit of business taken care of, then start organizing the computer desk again, then remember dinner, I’m supposed to be making dinner! So I set things down again, probably in the exact same spot they were in before, and head back to the kitchen. Ok, focus Dalynn… (FYI this whole scatter is fairly normal for me post-chemo). I take a deep breathe, glance out the window at the boys still playing really well together Thank you Heavenly Father, and start cutting and prepping dinner. I end up taking a short distracted jump on the dishwasher again, finishing the load this time, and then back to cook. Why are my hands shaking? I’m not that hungry yet, I ate breakfast and lunch today. I can pop my neck, so no migraine. Why are my hand shaking? As I think back through the day of uneventful productivity leading up to my unexplained exhaustion, my agitation and intense desire to clean and declutter and inability to focus long enough to do so, while I really should have been cooking dinner (because its almost 6:30 and the boys go to bed at 7:30), my scatterbrained behavior while doing so, and now my shaky hands, it hits me. I’m having an underlying anxiety attack! I realize I’ve been in a state of subconscious anxiety since I received the phone call this morning, confirming arrival time for my 7 year old’s minor surgical procedure tomorrow. I had been surrounded by my kiddos all morning and I was enjoying my time with them, but the worries about William’s reactions to the whole process of surgery and the discomfort afterwards (ADHD/ Level 1 Autism), had been tumbling around in the back of my mind all the while. My body couldn’t contain the physical manifestations of my PTSD anxiety any longer. Now that I had given it recognition, the mental part moved into the forefront. Ok, great, what do I do now? Worries, and random rational and irrational fears and explanations start tumbling through, my fight or flight starts to kick in and I momentarily feel like running away, that passes just as quickly as it came, then on to who can I talk to? Julia is gone for the evening, Shawn is at work dealing with last minute stuff so he can be home for William and I tomorrow. Samantha!!! She’ll get it, without scaring her. I text with her for a few minutes, she reminds me to breathe and talks me back to the rational, I go ahead and take one of my emergency-only valium, make a conscious choice to write it down to get it out, and then its over. The thoughts are still tumbling around. I’m still unsure of how my son will handle all that tomorrow, but its back to normal, non- panic levels. Manageable.
—This has been a public service announcement brought to you from one PTSD-life to anyone who can benefit from hearing about it.–
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And this morning its all back in-check, Momma is in control and little man is currently in surgery. Soon to be ready to head home with Daddy along to calm us both as needed.
A couple of Saturdays ago, Shawn was supposed to either go on a short Canoe day-trip with the men in our ward, or work on his dad’s truck (his plans, not mine). Late Friday night he opted to stay home and work on the truck. I was relieved, but sorry he was missing out on “normal” fun time. When the alarm went off that morning at 8:00am (set just in case the boys didn’t wake us up by then) I was even more relieved he was going to be home, I just couldn’t “do it today”. I just wanted to stay in bed, and I wanted Shawn there with me. I was okay if he needed to get up, and I didn’t talk to him about why I needed to stay in bed that morning, until later. I was stuck in my own head again. The weeks of monotonous routine were getting to me. Weeks of throwing a load of laundry in the wash, eating breakfast, showering right before my appointment (so my pits didn’t offend anyone), dressing for the day, leaving the house by 9:30am to go to Radiation treatment, changing into a hospital gown, lying on the treatment table for 20ish minutes, rubbing Radia-plex on the treated area, changing back into my own clothing, driving back home (with the occasional few minute detour to a store for necessities, no time for whole grocery shopping), having a few minutes chat with my mom and William, putting together some sort of healthy lunch for William and I, taking about 30 minutes to do some light “tidying up” (no time for actual cleaning lately), then crashing on the couch for a much needed two and a half hour nap (while William plays or watches cartoons quietly in the same room), waking up as Chris and Erick burst in the front door arriving home from school (sometimes dozing for another 30 minutes afterwards because I was just soooo tired still), getting homework and afternoon snack taken care of, getting dinner started (or not some days, we’ve eaten a lot of take-out lately), getting the boys to bed at a decent time, then vegging on the couch with Shawn until I doze off again…and then I repeat it all again the next day, sometimes with added appointments or an occasional walk in the evening. And that’s not including all the other stuff that I’ve thrown in there the past two weeks…
Can you tell I’m not getting any of my “job” done? Can you tell I am stuck in a rut? Can you tell I like my schedules and such? Can you tell that I am not dealing well with it all? Well, I am doing better with it now, but I was having a really rough time of it on the 17th.
Shawn stayed in bed with me, holding me, letting me doze off and on, as the boys came in and out of the room asking this and that but generally letting me be (it sure is nice to have Erick be old enough now to get his brothers cereal and Chris is old enough to get cartoons started for them too). It was some good needed together time, but also some mental health time for me too. Around 10:00am when I was wide awake, but not really wanting to leave the room yet…I felt like I needed to go ahead and let Shawn know what was bouncing around in my head. I thanked him for letting me be lazy this morning and for being around. I teared up and told him that I was just having a really hard time this morning, and that I am really getting bogged down by feeling like I’m not getting anything done anymore, feeling like all I do is Radiation and Sleep. Snickering to myself as I realized I had just slept or sluffed the morning away, again, grrrr. He looked at me with those loving eyes, and said, “This isn’t your life.” I didn’t quite understand him at first. So he explained further, “this ‘moment’ in time isn’t your life.” Radiation treatments will end, the fatigue that is causing me to take such long naps will end, the Cancer stuff will subside, and my routine will get back to what I want it to be. He continued, “And in the meantime, the kids and I are okay. We will all do as much as we can, as much as is needed to be done, and then the rest will be okay until then.” Yup, I love this man! The man who has been struggling with his own “catch-up” game at work. The man who has selflessly worked on our vehicle repairs, his dad’s vehicle repairs, and has now offered to help another family with their essential vehicle repairs (asking my permission before beginning each one); pointed out that the house and the family are in working order. So what if the clean clothes are in a pile in the living room, they are clean, we know where to find them, and the boys are still being taught and doing their part by getting at least theirs put away. So what if the dishes sit in the sink a couple of days longer than usual, at least we have clean dishes to eat off of, they aren’t sitting long enough to grow icky things in them, and the boys are still doing their part to help with that as well. So what if we are not able to make a menu or “proper” grocery list and shopping trips right now, our bank account is okay, we aren’t running to the store everyday for lack of things, we have the food we need in the house and other necessities as well. So what if we are eating a lot of convenience food and take-out right now, we are fed, we aren’t starving, and it’s only temporary, our bodies can handle temporary. So what if William is watching more cartoons now than he usually does, he is getting out and playing with Grandma in the mornings, he is getting outside to play with his brothers in the afternoons, he is playing with toys in between all that, he is not in any danger while you nap, he has his mom in the room with him. “This isn’t your life, it’s only temporary.” Sigh. As usual, he said exactly what I needed to hear. We got up and got moving with our day, spent time with the boys, Shawn worked on his dad’s truck, and I felt better for it. Did I regret staying in bed that morning? No, not really. Looking back on it, I needed that day of non-routine to be able to “deal” with the next few weeks of non-stop go.
Shawn and I were running just a tad bit late that morning, but arrived only 5 minutes late for the 6am “show-up” time at the Keck Free Electron Laser Surgery Center (aka Vanderbilt Outpatient Surgery Center or Keck Center, or FEL Center). It is a very small place and by the outward appearance it doesn’t look anything like a building one would do surgery in. There is valet-style parking, but only because there are only 5 parking spots near this building. It’s right smack dab in the middle of Vanderbilt Campus with construction on all the surrounding streets. We didn’t have any problems finding it though, the staff had sent me a map and directions in the mail back in June, and they also called us at 10 til 6 to let us know there was construction still, and to follow the paper map, not a GPS app.
I then filled out registration papers at the front desk, sat in the waiting room for maybe 20 minutes until a nursing assistant came to collect me for vitals and such. Shawn had to stay in the waiting room while they did all that. I think it was mostly because of how tiny the facility is, the pre-op rooms are very small, but big enough to serve their purpose as long as there aren’t too many bodies in the room. The nurse who did my pre-op stuff is actually a 29 year Breast Cancer survivor. That was fun to chat with her abit, about how things have changed for the better since her day. She was a pro at doing the blood draw, and putting the IV in. She even listened when I told her the best spot to go for, and not to even try my hands (the IV always pops back out there). As soon as she was done with her stuff, and I had my lovely purple paper gown on, she sent for Shawn, and remarked that that was it until the surgery started at 8am sharp.
Well, that was it for her at least. We had 5 other visitors between 7:15 and 8:10. I am part of the Vanderbilt’s study to restore sensation in Breast Tissue, so a medical student had to come in and collect data on the sensations that I could feel in contrast to what my tactile feeling was before DIEP with Nerve repair. It didn’t hurt at all, in fact it was enlightening and weird all at the same time. She kept having to throw my gown back over my chest as more people tried to just walk on in, but we dealt with it ok, though I was grateful of how aware she was of me and my bared chest and how I probably felt about being exposed more than I had to be. Plus, it also gave me this sense of “ok, they are real now, even this young medical student who has never gone through anything like this before in her life, recognizes them as a part of your body you should be modest with.” When we finally finished the results showed definitely more sensation in my right breast (the one that had nerve repair done) than in my left. I knew that much on my own, but now there is a measurement written on a piece of paper stating exactly how much I regained so far. (its not just in my head)
One of the interruptions was a 8-10 year grad student who was assigned to do the Consent Forms with us. I have to say I’ve never had an experience like that over paperwork. He was amazing! Not only did he present the papers in a very detailed and professional manner, he also managed to answer questions we hadn’t even spoken yet and describe what certain wordings meant. This is NOT normal. Most medical staff just walk in the room, blurt a short hurried blurb, and then tell you to sign. This one left Shawn and I blown away, so much so that we both thanked him heartily for the way he presented those documents and didn’t treat them as just another paper to sign.
After the younger med student came back in and finished the tactile tests, then came the anesthesia team, the attending physician(?), a nurse with a survey about communications prior to surgery day and ease of finding the facility, and a few other preparatory visitors all squeezed in to that 45 minutes. And then… there’s Higdon in to have his kindergarten art class time 😳.
A year or so ago (after healing from radiation), Shawn and I had purchased some prosthetic nipples just to get an idea of how I would feel with them on or not. I’d been a year or more without the real ones, so this was to help me decide if I wanted to live without them still or pursue researching the chances for reconstructed ones. One set were just oh so wrong in dimension, that we set them aside for a laugh now and again. We decided a couple of months ago, Higdon would be the perfect recipient of a prank involving these monstrosities. I won’t fill you in on the exact details, but suffice it to say, we livened up that Pre-op Room, and Higdon appreciated the laugh that morning and we have a third doctor won over by my husband’s wit and charm. Even still laughing over it in post-op. Yup, my husband the ominous guy with the chops that no one is sure how to approach until he decides to pull something like this.
After Higdon and I recovered from our laugh, he drew circles and outlines on the areas he planned to remove fat from and then marked the areas he would then inject it into. He also asked me about my abdominal scar revision, which had managed to smooth out on its own in the problem area, but now had some sections of hardened scar tissue that could cause me problems in the future. We jointly decided to go ahead and clean those hardened lumps out, with the understanding that they may just come back again, but it was worth the try to get rid of them while I was already under anesthesia. He also marked the balanced placement for the reconstructed nipples and then covered me back up and the rat race started up again. Well, at least they tried…I had to go to the restroom. I had been holding it, waiting for a break in all the rush….now I couldn’t hold it anymore and I refused to be “that patient” who lost bowel/bladder control on the operating table. So, I made them all wait on me. Once I was out of the restroom they whisked me past my hubby without a pause for a kiss good luck, as the anesthesiologist injected something into my IV, and right into the OR where there was a bit of laughter over some conversation between Higdon and the team (probably our prank). As the assisting anesthesiologist placed the gas mask on my face and gently held it down for a good seal on my small mouth, mentioning I would be falling asleep any minute now, I looked at the big red 8:10 on the roof near the foot of the table I was moved to….
The next thing I remember was waking up to the awkward, gentleman, recovery room nurse (aka mechanic in previous life). I did some of the usual groggy chatting about things, but my throat was soooo scratchy and dry this time. I’m still not sure what was different, other than maybe my allergies possibly causing my throat to have already been agitated before the intubation (no medicines taken since midnight, meant no allergy meds either). He gave me plenty of ice chips anytime I wanted, but I could tell he wasn’t as adept at this job as the others were. I asked him to sit my bed up for me (best position immediately following these types of surgeries is only slightly reclined). I remember chatting about taking my pulse-oximeter off my finger, which led to chatting about mechanics and O2 sensors, because that’s what I always end up calling them. He got a chuckle out of that and knew what I meant because he was a mechanic prior to going into nursing, after that he wasn’t quite as awkward. Shawn was in next, filling me in on the report from Dr. Higdon, everything had gone really well. My surgery had lasted an hour and a half, all things we had planned for happened, plus a couple of extras. I was sooooo thirsty! More ice chips and a small cup of Sprite as another nursing staff member came in to do the discharge instructions as my mechanic continued to unhook machines and cables. “Get dressed and then you can leave as soon as you feel able, but we will need to wheel you out,” Then poof, it was just Shawn and I, as I dressed. The next minute I was being wheeled out to the truck we drove, it was such an odd feeling after having had so many major and serious surgeries, to be just “dumped out on the curb”, not by their mannerisms, just the swiftness of it all being outpatient. And then, Shawn began his coachman duties for the weekend, stepstool and all. I was Cinderella for a bit.
One thing that was mentioned, to both Shawn and I, was the need to get my prescriptions filled in Tennessee, before we got back into KY. We both thought it was just a precaution against the way the pain sneaks up on you as the IV meds fade away. Later, we realized one of my pain medications was a quick release version that KY state law would not allow to be filled in that form. We were headed further into TN anyway, but we went ahead and found a pharmacy as soon as we got out of Nashville, into calmer traffic and less sketchy areas. We found a Walgreen’s/Rite-aid near a wings and burger place with some really great reviews. I was super, duper thirsty still, and now starving (it was now around 1pm in the afternoon). We waited around in the pharmacy for my prescription to be filled, then headed over to eat while we waited for the hotel to be ready for us to check in at 3pm.
Once I had water (lots of water) in me, with an endless supply at my beckon call, and a easy to access bathroom, because I was now needing to pee every few minutes (my IV fluids AND all the ice chips and water were now draining from my system) I became my usual chatty-Cathy. I hope Shawn enjoyed the talking as much as I did. We had almost the whole wings place to ourselves, as we had arrived perfectly between lunch and dinner hours. It was nice, we talked about a lot of things, and didn’t really worry about who heard us, or even care. We both really enjoyed the food too, it was awesome, and not just because we were both starving at that point. I had a cheese-steak with everything on it, and Shawn had lots of wings. We had fries too, which were also delicious, but neither of us could finish them after everything else we ate. If you are ever in Murfreesboro, definitely eat at Buff’s Subs Burgers and Wings.
The rest of the weekend was filled with drinking lots of water and taking my medicines on a timer, so I didn’t miss one dose and end up hurting. I wasn’t allowed to shower or bathe, except for rag bath style. I had a surgical bra placed on me in the OR, that was to stay on until my follow-up appointment in 5 days, only to be shifted if and when my nipple dressings needed adjusting or changing. They also placed an abdominal binder on me in the OR, to help the swelling stay minimal and help the divets and lumps smooth out correctly. Our hotel was nice, full of friendly southerners who chatted with each other in the elevators and hallways (even though we’d never seen each other before). I tried to write, but as you can tell by the lateness of this post, I didn’t do much writing. I would get set up to do it while reclining and fall asleep. So I slept off and on in my pile of pillows, went walking around the balcony-style hallway circling the 10 story atrium, every 2 hours or so to keep the blood clots at bay, and then just kind of piddled around here and there in the room while Shawn was out and about at work. We went to a movie one night, went out to eat another, ordered in another, etc. Nice and relaxed.
I’m super glad I had that extra time to just BE in the hotel. It was like a hospital stay, but without the sleep interruptions and beeping and such. I was sore the second and third day, but the 4th day was better, so there again, glad I had those extra days before traveling back home. Our trip home was interesting due to work issues for Shawn, but we made it back comfortably, with several pee stops, although not quite as many since the IV fluids were now out of my system. I can’t even imagine what the drive home would have been like if we gone home on that first day!!!!!
More medical mumbo jumbo to come in the next post, hopefully I have few minutes this week, amidst all that will be our Julia coming home from her 18 month mission in Scotland and Ireland!!!
View from our room on 8th floorAwesome hot breakfast bar, got the food and ate in the room 🙂My view out the huge bedroom windowsVentured outside to walk a couple of times.
Friday’s treatment, #2 but first of the regular daily ones, was a bit rough. The setup time wasn’t too bad, but the time I spent on the actual table with my arms above my head, was wayyyy more than I expected (20 minutes). I thought it was weird that the actual treatment was taking so long. Afterall, the radiation therapists had told me that the treatment would only take a few minutes. Twenty minutes was not what I consider “a few”, but maybe they just didn’t realize how long my specific plan was going to take. My arms were very sore and I remember telling my mom, Julia, and Shawn that the appointment itself wasn’t too bad, but that I definitely need to take some ibuprofen an hour beforehand for the rest of them. I couldn’t get my own arms down again. After going through my 3rd and 4th treatment…
I’m back at the hotel after picking up prescriptions and eating an amazing L-inner at Buff’s in Murfreesboro with my hubby and basically no one else in the little wings and burgers place. Surgery pain blockers are just now beginning to wear off, started at 8:15am this morning. Hubby is doing an amazing job of babysitting this chatterbox, and now I sleep, then write more tomorrow…
And all through the hotel room, not a creature was stirring except this old mouse…
We made t out of Louisville around 7:30pm EST. Stopped at Subway shop along the way and enjoyed our drive with Cookie Monster, the Waze navigator. We arrived around 9:30pm CST. Got a free upgrade from King Suite to King Executive Suite (not sure if it was that ole Breast Cancer card coming around again, or they just accidentally gave our room away and had to give us the only other King available). It’s nice, we won’t get much use out of it, but I really appreciated the nice big extra clean shower, the comfortable couch I’m sitting on now, and the super comfy bed my Hubby zonked out on about an hour ago. I’m a bit wired, partly excitement, partly surgery-eve jitters. So I’m writing to help get some of the rambling thoughts out of my head. Gotta get up at 5am CST and pack up, check out, and head to the Vanderbilt Outpatient Surgery Center for my 6am check-in. And now, I’m off to bed.
Today, as I sat in my Relief Society class (Women’s Sunday School), I listened to the lesson with a troubled mind and heart. I had a rough morning with William. He for some reason just flat out refused to go to his Primary classes (children’s Sunday School). It was not like him, but we were also out of our routines the past couple of days and he seems to be having some blood sugar level issues, too. I ended up spending most of an hour in and out of the building trying to talk him into going to class, trying to get him to tell me a specific reason why he didn’t want to be at church today, trying to explain to him that we weren’t going to just leave and go home, etc, etc. until I ended up just sitting in the van (better than in…
Dalynn's Road to Recovery 