Giving Back/Reaching Out/Sharing My Story, Part 4 – Helping Others Through Their Own Treatments: Trained Friends for Life – Peer Mentor/Navigator

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.

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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.

Presentation – Feb. 6th at Anderson Public Library

Sneak attack anxiety – brought to you by Cancer-related PTSD

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.

This is not my life…

Thoughts from September 2016:

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.  

My Revision Surgery Day…

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 floor

Awesome hot breakfast bar, got the food and ate in the room 🙂

My view out the huge bedroom windows

Ventured outside to walk a couple of times.

It’s all good…

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…

Twas the night before surgery…

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.

Still Immuno Compromised, another rough week 10/31-11/5/2017…with a calmer week to follow it up

Days 5-9 out from the start of my treatments for C.diff I was feeling awesome!  Not awesome enough to eat pizza yet, but definitely back to my usual active self.  I went to William’s School Fall Festival on the 27th, then the church Halloween Party on the 28th, and then to church on Sunday the 29th.  I thoroughly enjoyed myself at all three.  With my boys, my Mom, and/or my hubby with me at each to ensure that I didn’t lift or reach for anything, it was like being pampered. I was even feeling good enough to still have our traditional Trick-or-Treating with our friends around our own neighborhood on Halloween.  It really was a grand few days!  And I really enjoyed our time with the kiddos and good friends.  But….I guess I had picked up a horrible head cold from one of the three public activities I had been to in the last three days.   Around 9pm on Halloween night, 9 days out from start of treatment for C.diff.  I started feeling tired and irritable, and I was sneezing like crazy.  The next day it was full blown head cold, and I was miserable.  I was drained of energy and wasn’t sleeping well, and of course I was still having to sleep on my back from the post-op restrictions, so Shawn wasn’t sleeping well either (I snore).  I felt so horrible that I told my mom on Wednesday night that I might have to reschedule my 2 week follow-up set for the next morning.  Shawn opted to stay home the next day, talking me into going back to bed until it was time for the doctor’s office to open.  I woke up feeling better enough, so we decided to go ahead and keep the appointment.  I was actually doing much better for several hours, but later in the day my energy levels started waning.  Then that night the head cold dropped into my chest and developed a cough in place of the sneezing.  Shawn insisted that I go ahead and go in to my Nurse Practitioner in the morning to make sure it wasn’t turning into pneumonia.  I was feeling a lot better Friday morning and didn’t really want to, I’d just been there a little over a week ago, and I really just wanted to wait it out, but I followed my husband’s counsel.  I talked myself into it by saying I needed to pick up my post-treatment stool sample kit, anyway.  My NP checked me over, never once making me feel silly for being there with a common cold that she knew was going around town.  No signs of pneumonia.  She asked what I was taking for the symptoms up until now and then suggested that I take “actual suphedrine” instead of the weaker stuff on the shelves.  She gave me a prescription for it as well so my insurance would cover it and told me to take it through the weekend and let her know if it didn’t improve by Monday.

She also gave me the green light to be around other people, I would no longer be contagious.  This was just the crud left over.  Relieved, I went about my day, which included an eventful trip to Lexington and back with my Mom, Grandma, and Amelia.  Then, we decided to go ahead and clean the church house that evening and go out to eat with my parents afterwards for fun.  Cleaning was okay, I did little jobs I knew would be okay for my arm.  Enjoyed the time with my boys and hubby.  It took longer than planned, but we did a good job and were ready to go eat.  I noticed that my eye had started “gooping”.  Something it has done in the past when I have seasonal allergies act up.  I assumed I had just stirred up some dust or something like that, and went about the rest of the evening.  By the time we finished eating at the local Chinese buffet, my energy levels were bottoming out again, and I was starting to feel really drained.  I dismissed it as just being a long day, and that I was just ready to be home.  As I drove home, I began to notice that my right eye was feeling weird, and oozing regularly now.  Hmmmm, I must have gotten something in my eye.  As soon as I got home I went straight for my allergy eye drops, put two drops in, and worked on putting the boys to bed.  It was late, we were all tired.  Then as I passed a mirror, I realized that my right eye looked like someone had “popped” me in the eye.  The upper eyelid was swollen just a bit in towards my nose, but even more alarming was the lower lid, it was swollen all the way down from the tear duct to just under my cheek bone.  I started looking for a bite mark, thought about all the times I had been near my wiggly 5 year old, looked in my eye for redness, etc.  Nothing gave reason for this to be happening.  My eyes were clear, nothing was itching, no mosquito or bug bite marks, no rash…so why were my lids so swollen and why was my eye still gooping?  I showed Shawn, then put a cool wet rag on my face, and continued to get the boys ready, figuring it was just a weird allergy thing…afterall I hadn’t had bad itchy eyes since before chemo…maybe this was the new normal for my seasonal allergies.  I needed to give the drops some time to work.  The rag always worked when I was a kid, too.

I let it rest overnight, giving the antihistamine drops and cool rag a chance to work,  with the plan to go to the Urgent Treatment Center in the morning if it hadn’t gotten any better, and the ER during the night if it got worse, or painful.  It didn’t get any worse, but it definitely wasn’t better the next morning.  So, I got things settled at the house and headed to the UTC.  The Physician Assistant was a new one for me, but she was kind and knowledgeable.  She asked the usual questions, “How long has this been going on?”, “Any other symptoms?”, etc.  After pressing on my face a bit, noticing the tenderness towards the lower end of the swelling (right around where my sinuses would be), she decided to check my ears as well.  There was now swelling in my eustachian tubes, no infection yet, but with the swelling there and the swelling and tenderness near my cheek bone she explained that in some cases the sinus cavity will actually fill with mucous and thickened ick and then back fill into the tear duct area.   With the swelling in my ear canals, she could tell that there was a lot of pressure in my sinus cavity.  And, with the lack of redness in my eye, and odd way the swelling was shaped (down and up instead of around the actual eye), she could tell mine had done that.  I was surprised.  My regular NP had just looked at me not even 12 hours before the swelling had started.  I asked the PA, if maybe we had missed something the day before.  She then explained to me that not only does the lowered immune system cause me to catch things easier and often take them longer to get out of my system, but it also causes them to progress at a much faster pace as well.  Duh, I’ve had this happen before.  I just didn’t think I would still be this “fragile” this far out from Chemo.  Doctors keep telling me that its the norm, but just wow!  Still?!?  My pre-infection wouldn’t have been visible even just a couple hours before the swelling appeared.  So, no my NP and I hadn’t missed something the day before.  She then prescribed a steroid drop to be used to bring the swelling down and then discontinued, with an antibiotic drop to fight off infection in that area to be used until the end of the regimen, and a nasal spray to soften up the gunk in my sinuses to be used twice a day for at least 15 days, and suggested that I go back to taking Allegra instead of the cold medicine seems the antihistamine in the Allegra is more powerful and effective at clearing the sinuses.  She told me to continue taking the “real Sudafed” prescribed by my NP, and to give the NP a call Monday morning to update my records on my situation and what the new prescriptions were.

It took the eye a couple of days to get totally back to normal, but the nasal spray helped immensely, especially for sleeping overnight.  My cold just seemed to disappear as the swelling disappeared.  I still have the occasional “productive” cough, but other than that, I’m all good now.  I managed to get through it without any new antibiotics either (that was plan B if the nasal spray/Allegra/Sudafed combo didn’t work).

This has been a not-so-gentle reminder of how vigilant I still need to be out in public.  Washing my hands, using hand sanitizer, taking advantage of the wipes for the grocery cart, and then being more vigilant and choosy about the types of medicines I use to clear up any colds I do pick up (less expensive and combo meds aren’t necessarily the same as the “good stuff”).  I am a bit wary to be out in public, but no where near the phobia-like feelings I was having last year at this time.  So, please don’t be offended if I don’t “rub-shoulders” with you too much in the next few months.  And, as I plead last year, please don’t come around me if you know you are sick.  But, I am in no means going to hide away in my little hole.  I have gotten my “at-risk” flu vaccine, even though it doesn’t cover ALL of the flus.  I have hand sanitizer wipes and a bottle in my purse, and I know how to wash my hands.

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Now, all that being said.  I did actually have a pretty good week, mood wise, and I would feel like a brat if I didn’t add this to my post today 11/5-

What I’m Thankful for this week 10/31-11/5 –

I got several hours of good health to casually walk around the neighborhood with my kiddos and some really good friends for our traditional trick-or-treating.

Good Physician Assistants and Nurse Practitioners that don’t make me feel like my concerns about a “common cold” are silly, and give me good advice and don’t over prescribe medicines to me.

A husband who pushes me to go ahead and go the doctor even though I think its nothing and it will just go away in a couple days.

A Heavenly Father who still puts people in my life that help me take care of myself.

Kiddos that remind me, “Don’t reach, Mommy” when I forget in a moment of habit.

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And today (11/6)…today I am almost 100%.  I have thoroughly enjoyed an evening walk with my husband last night.  I woke up almost all smiles with the boys this morning.  I had enough energy that I didn’t have to fight the temptation to go back to bed after everyone else left for school and work.  I took my time doing some things around the house.  I made some phone calls, then turned on some music to cook to.  I prepared food from scratch for my family!!!!  And then, I sat down at the computer to finish the three blog posts I’ve been making notes on for these past couple of weeks.  In a few minutes, my youngest will get off the school bus and he and I will wander to the grocery store to get some fresh veggies for lunches and dinners for the next week, while we wait for time to go pick up the older two boys from Academic Team practice.  Today, life is sweet…a little chilly, but sweet 😉

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And now seems it took me almost two weeks to get this post written, I want to add:

11/13/17

I am glad that I was back to 100% in time to care for William when he succumbed to the same horrible head cold.  And even though he drove me nuts because he doesn’t slow down even when he’s sick, I’m glad I was able to enjoy the couple of days with him as he had to stay home from school.

I am thankful for kiddos that LOVE school, and for teachers that encourage them to do their best and to be themselves at the same time.  Teachers that I am able to trust to teach them when I can’t do it myself at home.  We have been truly best with a great group of teachers in our schools here in Lawrenceburg.

I am incredibly grateful for a wonderful weekend, with lots of good moments with our kiddos, a spur of the moment visit from our daughter “to help Daddy cut wood”, I am thankful that my husband CAN cut wood again, and I am thankful for the energy to get a lot of cleaning and to-dos done at home with the two little boys while they cut wood.  It was a good weekend.  And, I am also grateful that I had a down day today, to recuperate from the weekend, lol.  Yeah, I still need that too!

I love my life and my family, I love that Heavenly Father knows me and knows what I need, what I need to do for others, and that EVERYTHING is possible through the Savior, Jesus Christ!

1 year Breast Cancer Surgeon Checkup and 3 month Plastic Surgeon Checkup – July 14th

Sorry, this one took me awhile to even WANT to type out, then life happened once I did want to and today I finally had the chance to finish it up for posting, its mostly a rough draft, just had to get it on out there:

Updates From 1 year Breast Cancer Surgeon Checkup and 3 month Plastic Surgeon Checkup

So, this past Thursday I had my 3 month check up with Lynch AND my 1 year checkup with Dr. Rogers my Breast Cancer surgeon.   Tuesday, I started having some real issues with anxiety creeping up on me for my appointment with Lynch.  I didn’t really figure out the root issue until one of the times I popped awake in the middle of the night Wednesday.  I don’t remember ever feeling quite this way about my appointments with him  There were other nervous times, in fact I get nervous before most of my appointments still, but Lynch is one of the docs I look forward to seeing because I come out feeling comforted and bolstered with some real HOPE and confidence to keep me afloat until the next appointment or surgery.  I found myself aggitated and irratable and easily dropped into tears.  My epiphany Wednesday night…I realized that I was scared that he was going to see how much more the left side of my chest has pulled and squeezed up my left expander, and then tell me that the only thing to do was to hope that the scoring procedure he would use at the implant swap surgery worked.  I was afraid thathewouldn’t have anything else to offer me, that I would be stuck with a severe difference between my right and left breast shape and location for therest of my life.  I was also afraid that we would need to cancel or put off my surgery for another year.  You see, I have realized over the past week and a half that part of my “worries” and image issues have stemmed from something that I thought was all just in my own head…I think my left breast area is still shrinking, still lifting and squeezing the expander even further.  Maybe it wasn’t really, maybe it WAS just all in my head.  Either way, I was having a really hard time seeing how ANY surgery could ever make enough of an impact to get me even close to “normal” looking at this point.  Yeah, Thursday morning wasn’t a good morning.  I was full of anxiety and worry.  I was so consumed by it that I didn’t think to get down on my knees that morning to pray.  I did say some little panicked generalized prayers in my mind as I went about getting everyone ready to head out that morning.  “Please help me hold it together today”, “Please help me be able to talk to Dr. Lynch without becoming a blubbering puddle of tears”, “I’m so grateful Shawn is going with me, but please help me to not make him think I’m going crazy”.  Stuff like that.  I was so consumed by it that I was having a hard time even wanting to make casual conversation on the drive there.  I remember thinking, I’m going make Shawn worry about me if I don’t talk about something…but I couldn’t pull myself out of that cloud my head was stuck in.  I couldn’t even figure out a way to talk to him about this yet…somehow if I did, it was going to make the image I had of myself real, because then he would see it too.  How could I do that to him, to myself.  After all we were just joking around about nipple prosthetics, tattoos, and such a couple weeks ago ( the icing on the cake, the final step in reconstruction).  Now, I would be looking at taking a step back into the major stuff again, letting the “fun” part of all of this slip away again.  

We made it to the parking lot, I held Shawn’s hand while we walked into the building.  We had a longer than normal wait time (new office staff in training, didn’t get my file from the printer to the “ready” folders).  That didn’t help my sanity any for sure, but in a way it did.  I was able to grapple my anxiety through my frustration and speak up for myself to get things rolling.

Once we were back in the exam room, (waiting longer than normal once again, as Dr. Lynch was now with the two patients who came in after me), there was alot of silence mingled with joking about implants (they have a few on display and literally tell you to feel free to play around with them in the decision process).  During one of these silent times, my nerves got the best of me.  I am not sure exactly what part of our joking got me going, but I was suddenly weeping while I sat on the exam table in my hospital gown, telling Shawn all about my fears, watching his eyes register and return the concerns I had been having but also trying to help me remember that we needed to talk it out with Dr. Lynch, asking him to re-explain the procedure he hoped to use to get that capsule around my left implant to release.

Just as I was trying to get myself composed again, Dr. Lynch knocked on the door and came in.  My face was still teary and red.  He was not used to that face on me, remember I’m usually one of the more upbeat, eager, and stable patients he has.  His usual jovial face turned to concern and he asked if everything was okay.  I began unravelling all of my concerns and worries about my appearance and my surgical outcome.   And then my frustrations with how little progress I’m making on the physical therapy and such. I guess the two of them could kinda see where my mind had gone…I thought I would be done with this stuff by now…Dr. Lynch reminded me that this reconstruction business is ongoing.  He also explained to me that he had more “tricks up his sleeves”.  He started out with the expanders and implant plan as plan A, hoping for the best outcome, but he knew radiation might change that so he has plan B and C held in reserve for that.  He explained that he still thinks the scoring method with work, but even after that he plans to do some Fat Grafting to create a more natural shape; and if the scoring method doesn’t work the Fat Grafting will help with that problem as well.  “There are options, I’m not going to leave you deformed, I wouldn’t be doing my job if I did.”  

In the course of this discussion, I did find out that my tear drop shaped implant isn’t an option any more, plus a couple other “plans” changed as well.  I left his office a bit less distraught.  I was still worried and still anxious about the “unknowns”.  I was still super bummed about still having possibly another year of processes and procedures to go through until I was “me” again, or at least as close to “me” as possible.  But, at least we had had a good talk, I understood I wasn’t STUCK with my new deformities, and I had a bit of Hope for that area of my life again.  The all consuming anxiety was set aside.

Update: September 14 – I have since realized in my own mind that the issues I have had with my irradiated skin is the reason he didn’t just go for a FLAP or DIEP type reconstruction straight out.  If I had gone through a tissue transplant to recreate my breasts, that tissue would be damaged and deformed now…the expander has helped the original tissue take the beating without the major deformation. No matter what the height difference is, its still in the correct and malleable shape it needs to be for the permanent reconstruction to be done.

It’s gettin’ real, people…

The last couple of days have been a bit of whirlwind, when I look back on it, but in the moment seemed kind of slow and easy going as soon as I got the official phone call from the hospital (to notify me of my arrival and surgery time slot).  I really do better when I can plan precisely :).  And I’m proud of myself, I was even able to deal with a time change a couple hours later fairly well, only a little panic, then I took a deep breath and used my Mom’s brain to jump start my own and then I was back in action.

I report to the hospital at 5:30am tomorrow morning.  Sooooo, yeah, a 4a.m. shower with the Hibiclens soap they asked me to use Pre-op, and then out the door at 4:30am, just to be sure we get there in plenty of time to find a parking spot in the parking garage and time to walk to the entrance and find the right place to check-in.

Shawn and I made a last minute decision Friday night (thanks to a dear friend giving us a fandango gift card) to go out on a date.  One I’ve been yearning for for a few weeks now.  My mom graciously accepted the request to babysit once again, with the same kind of thoughts we were having. Go “while I’m up for it”.  So, we got Subway and saw a movie at the movie theater.   We weren’t as giddy and silly as we used to be on dates, but we had fun and had laughs and got to spend some couple-time that wasn’t related to medical issues or car repairs.  It was good.  We decided that we would just kind of get up when we felt like it on Saturday.  Shawn asked me what I wanted to get done, and listened and was willing to make sure it happened.  I made sure the list was well prioritized: not overly busy, but still getting the necessities and some of the “wants” done.  About halfway through the day we decided to take the 3 little boys to the movies and out to eat.  Shawn had originally had an awesome plan to go take the boys and I for a hike, but then I remembered I wasn’t supposed to do anything to re-injure my toe.  Bummer!  He refused to leave me behind, he wanted us to have “FAMILY fun”.  So, that’s how the movies came about.  We got most of my list done, the stuff I couldn’t do today, and then spent the rest of the day enjoying the boys.

This morning we got the boys up and ready and headed to church.  I thought I was doing pretty well, no real panic going on or anything.  I was relaxed.  I was happy to be there, happily watching my boys, occasionally correcting them or shushing them, enjoying the wonderful talks on Gratitude, remembering off and on things I needed to do when we got home, people I needed to talk to after the main meeting…then the thought entered my mind…I need to ask Bishop Snell to help Shawn give me a blessing.  I kind of brushed it off, thinking, Oh that’s okay, I can just have my dad come over this evening and help…then Oh, well that might make Josh (our home teacher) feel bad that I didn’t ask him…then Ok, I’ll ask him after sacrament meeting.  Well, that wasn’t good enough.  I suddenly felt extremely dizzy, it was a passing dizziness, and I was sitting down…but it caused me to reach out and grab hold of my 11 year olds shoulder for steadiness.  It passed.  Then as I sat wondering what that was, it wasn’t scary, I wasn’t worried for some reason, the thought entered my mind again…I NEED to ask Bishop Snell to help Shawn give me my blessing right after Sacrament Meeting, and I need to ask him as soon as possible, he needs to be asked.  Ok then!  I quickly scribbled a note to Shawn to ask his permission to pretty much do his job, lol, and ask Bishop Snell to assist him and if he was okay if we did it right after this meeting, because Bishop Snell looked like he might need to go home pretty soon.  Shawn’s answer was a yes, with some provisions that I hadn’t thought of.  I then quickly wrote a note to Bishop Snell with the request and asked a friend in the row between us to pass it back.  Yeah, I was passing notes in church, lol.  Something I NEVER do.  I waited long enough for him to have time to read the note and then glanced back to receive a smile and a nod.  Now, for some perspective, this man has been a very strong influence in my life these past 7 years, and strong supporter of me listening to the spiritual inspiration I have received in my callings and in my own personal life.  He has trusted me in my thoughts and actions and has thus pushed me to do better and see myself in a more confident way.  This man has had a huge impact on my husband and my oldest son.  And this man, has had just as rough a year as I have, if not a bit more (even though he tells me it’s just different, not more).  As we talked after Sacrament Meeting, I came to understand more fully why I needed to ask him today and right then.  I am extremely grateful that I went to church today, that I was in the right place at the right time, and in the right frame of mind to feel the Holy Spirit whisper to me.  To allow a man, that has done and given so much time and energy into my family’s well being, to feel needed by us again.  To have another chance to help us in a very real way, when he is not able to do much for anyone right now as he focuses on his own health and family.  I am thankful that in doing so, he was able to not only assist my husband in my blessing, but also to feel the need to offer to give Shawn a comfort blessing as well, something that Shawn needed but probably wouldn’t have asked for on his own.  A blessing that was full of wonderful counsel from the Lord for Shawn and for me as well.  I LOVE having the real and full priesthood of God in my life!  I LOVE having the ability to receive REAL and pertinent inspiration from my Heavenly Father, through the Holy Spirit!  And I LOVE having an understanding of God’s eternal plan for His children, so that the bad stuff we have to go through, or watch our loved ones go through, is bearable (not fun, but bearable)!

And now, I’m going to go fold some laundry, finish packing my hospital bag, then feed my family, then early bedtimes for us all.  The next two days are going to be full of alot of things!