Year 2, Monthly Check Up 2 and the Echo, Echo, Echo

I had my monthly check up last Friday via video phone call with my oncology NP. Blood draw the day before. My cancer antigen marker went up even more to 3.1 from 2.3. I really didn’t expect that and found it alarming, so I texted my oncologist right away. Last time I panicked about it, I waited until my appointment, and the doc told me to just text and not sweat things for so long. 

The NP put in an order for a PET scan for next month, instead of my regular CT. I told her I didn’t know the difference between them except a PET means I get to lie down in a quiet room by myself for a half an hour. Haha. She said that the PET is more sensitive, so it might show us if something is growing somewhere that we haven’t been able to see on the CT. 

I asked her if my expectation for the cancer antigen marker to level out was reasonable and what she expected to see too. Maybe I had been worried really over nothing and misunderstood. She said that they expect to see it level off too. I don’t know how long it can take for that to happen and thought that I would reach it after it bottomed out last winter. I guess not. It is still very, very low, and I’m grateful for that. 

Since I had fluid around my heart last year and Tagrisso, my targeted treatment chemo pill, affects the left ventricular ejection fraction, whatever that is, I get routine echocardiograms. I had mine on May 19th. I don’t get concerned about these anymore. I have been kicking my own butt on the stationary bike downstairs HARD! A little too hard a couple weeks ago. Made my whole body hurt. Oops. Anyway, I got a different tech this time. She was pretty serious. I always joke at the end about the tech checking out my breakfast because the last part involves pressing the wand against my tummy. I got a little laugh out of her. I was in and out in about 15 minutes, which I took as a good sign. The tech said I have a very photogenic heart. Thank you? 

My follow up appointment wasn’t for another week after the echo, so I expected to wait for results. My oncological cardiology doctor is more than on top of it. I had results from her that night that I woke up to see the next day. I love getting good news in the morning! My heart is clear and doing great, sounding great! I used to have an echocardiogram done every 4 months, then six months, now annually. It’s like I’ve graduated to the next level of health. 😀

I still had a follow up appointment with a cardiac NP on the 26th via video call. We had some technical difficulties. All went well eventually when we opted to just talk on the phone. She told me some signs to watch for that would mean a heart issue might have started, like unusual ankle swelling and shortness of breath. She said staying as active as I can will keep my heart healthy. 

Let’s see. What else? I’m still going to PT for my back and hip. Mostly the back though. Woof. Fridays are still my worst days, and I’ve been going on Wednesdays and Fridays the last two weeks. I’ve also learned that going in the morning is way more chill than the afternoons at the clinic. 

I’m still working from home and loving it. I feel like I can be everywhere I need to be and support everyone I need to support. When I’m in a location, I often feel like I’m in the wrong one because something will happen at another one. 

We have been digging up our grass and dead trees and planting plants in the backyard. We have so many weeds. Weeds and more weeds. I bought some vinegar weed killer yesterday cuz I’m not using any of that chemical stuff! I have organic fertilizer to try to get the grass to grow more and squeeze out the weeds in some spots. It’s probably a long shot. Also, all of the plants are experiments. Some will make it and some won’t. I’ve never been talented with gardening, and neither has my husband, so we’re learning as we go and having a whole lot of fun! We also see more fuzzy bumble bees and butterflies in the yard now, too. 

Alright, well, my painkiller is kicking in for my back that is so sore today after gardening and going for a long walk yesterday, and it’s time to start thinking about coffee and getting ready for work. 

Hope you all have a great day and enjoy the sunshine! I love this time of year! Mwah!

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Heal Part 2

Husband and I talked about all of this when we woke up yesterday morning. He had wanted to know why I couldn’t sleep the night before, so I told him what had been on my mind.

He thought that I was blaming myself for cancer because there is no why. I know from experience how hard it is to let that go. If unresolved issues were to blame for cancer, we would know about it. I told him that I’m not looking at it as blaming myself. I feel like I have these mental burdens to work through and heal from, and that bottling them up may not have caused cancer, but they can’t be good to hang on to either. I want to work through them.

I’ve made progress. Forgiveness is hard. I have only started in the last year to feel compassion for my abuser from childhood. It’s not my fault. It’s not his fault either. I made a lot of progress in my grief over my first husband’s death, too. Going through the group therapy grief program last summer gave me a lot of tools and helped me heal more.

Anyway, Husband says that I suffer so much that putting the cause of cancer on myself isn’t going to help anything. That yes, forgiveness is hard. He is still working through his own issues and forgiving a couple of people for unintentionally harming him emotionally. He used the word ‘never’ and I know how that feels to find forgiveness incomprehensible. It took years to really, truly forgive Ex for killing himself. I could be understanding and compassionate but the final push to forgiveness? Tough. Achievable, but tough.

The gene that I have that mutated has always been there. I have always had it. We may not find out why it mutated. I know that research is going on to discover more about how lung cancer gene mutations work. I receive the best cancer care and participate in all the studies. I hope any data my case provides helps others in the future. Am I still going to explore other routes to heal? Yes. That’s why I go to physical therapy instead of getting the spinal nerve block that the pain clinic recommended. Meditation? Heck yes! The mind is powerful!

Most of all, I reminded myself that I am healing. I have healed so much since March 2019. Targeted treatment cancer drugs are very effective.

Husband told me yesterday morning that I’m inspiring. I’ve heard that before. It comes down to attitude, and I have an infectiously positive one.

Take care.

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Heal

A week ago on a high pain day, I clocked out from work early, popped a painkiller, and nestled myself downstairs on the couch with extra pillows behind me to support my back, two blankets to keep me warm, and Netflix to keep me company.

I didn’t really have anything in mind. I had seen the documentary ‘Heal’ show up in a search I had done earlier in the week for a different show. My boss had told me about it either right when I found out I had cancer or when I came back to work after recovering from heart and femur surgery. Anyway, I’d been meaning to watch it, and I had the time and no will to do anything but rest.

The documentary explores the idea of self-healing. Some would consider the ideas in the movie a little woo-woo, as my dad would say. It explores alternative healing methods, like energy healing, Reiki, sound therapy, nutrition, and overall attitude.

Questions have run through my head since my diagnosis: ‘Did I cause my cancer? Did I do something to cause my genes to mutate? Or not do something? Did my unresolved issues present themselves as cancer? Did the years I spent unhappy, self-loathing, low in self-esteem, depressed, ashamed of childhood trauma and grief over my first husband’s death affect me and cause me to develop cancer?’

I don’t mean to self-blame, though I’ve been good at doing that in the past. Not sure if it’s a woman thing or growing up in a patriarchal religion and culture that preached it. I have had this feeling since there’s medically no why to these genetic mutations, so I have felt there’s more to it, more explanation we haven’t discovered or hasn’t become mainstream or accepted.

‘Heal’ talks about cancer patients having personality traits of not wanting to be a burden and having a hard time asking for help. Uhh, me and me. Crap. I think I’ve talked about it before that I got better at asking for help last year when I couldn’t do a whole lot on my own, like walk, go to the bathroom, get dressed, reach anything, stand and brush my teeth and wash my face, shave my legs. You get the picture.

Even this past year while I’ve dealt with a long recovery from back surgery, I have learned to set boundaries at the beginning of every weekend with my family by communicating that my pain level is here today, and I need help carrying laundry, de-shedding the dog, cleaning. My husband always supports me and tells me to take care of myself, chill on the couch for a day, take it easy on my walk when I’ve already ridden the bike that day. My son is usually willing to help out and do his part. I’ve gotten better at listening to my cues and lying down when my body says lie down. Most of the time. Sometimes things have to get done, and that’s the way it is. And sometimes I need the help of a painkiller in order to do anything. It’s true. No shame. No guilt.

Back to the film, it follows a couple of cancer patients who have advanced cancer through their journey to heal. With some work on themselves, they heal from the cancer. They face those hard issues, work through them, and heal. Advanced cancer retreats.

At one part, one of the patients talks about how lucky she thinks people are when she’s sees them out jogging. I totally relate to that. I miss running sometimes. It’s something I took for granted until I couldn’t do it. Now I’m just jealous. A HIIT class right now? I wish! I’ll get there. I’ll get my strength back.

At physical therapy today when I switched from sitting to lying down, I first told my therapist, “Check this out!” I laid down without rolling to my side first. He was pretty impressed. It’s a little thing. And I haven’t been able to do it for a long time without a lot of pain. He told me about one of his other patients who is recovering from shoulder surgery. That patient shared with my therapist that he celebrated being able to wipe his tush with his dominant hand recently. Therapist said it was TMI, but I jumped in with agreement that when I could do that again several weeks after femur surgery, I was pretty stoked too!

Well, watching ‘Heal’ inspired me to get back on track with my own emotional healing. I was on track about 4 years ago and went down a very dark tunnel soon thereafter. It’s time. Even though it’s going to have challenges, I’m worth it. Healing old wounds is worth it. Another thing I read in a lung cancer newsletter at my oncologist’s office was that focusing on healing from cancer is a more positive mindset than fighting cancer. When I meditate or think about my cancer, I focus on the word ‘heal’. I’m a believer in positivity.

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Year 2, 1 month check up May 1, 2020

I love this time of year! It’s very early in the morning right now, and I can hear birds chirping before the sun is even up. I love how light it gets and how much easier it is to get up when you can see where you need to go. I think May and June are my favorite months of the year. Also, of all the times of the year to maintain stay-at-home orders, it’s been ideal to happen in the spring.

I had my check up this past Friday in-person. It’s really not too scary to go to the clinic. Everyone is masked, patients and providers. The waiting room isn’t super packed with people. You can sanitize your hands every few feet if you want to. I didn’t. I prefer soap and water, so I made sure to use the bathroom at the clinic and before I left infusion at the end of my appointments.

I got my favorite nurse for my blood draw. She always gets the vein on the first poke. And she’s fun to talk to. I watched Instagram videos after that while I waited for my doctor’s appointment. Oh, I love those guys from Queer Eye!

I saw my doctor. It was good to see him! He asked me about my everything, and I said my everything was doing really well. My fingernails and toenails are healthy. I do a salt soak every Sunday for my feet to prevent paronychia, nail bed inflammation. That stuff hurts, especially when it turns into staph infection! My periods have come back more often than every 90 days, and my energy levels are up, like more normal. I’m sure working from home has something to do with increased energy. My back and my leg continue to get stronger. I rode the bike for 27 minutes last Tuesday and got sweaty like I had been running.

We reviewed my blood results, and every one was in a normal range. Every. Single. One. My cancer inflammation marker went up .10. I did not freak out this time. We will probably do radiation to my main tumor, if it continues upward. I get to wait a little bit for my next scans until the end of June. I got my bone shot, and I’m going to get it every other month now instead of every month.

Since Denver flattened the curve and I got face masks (thanks Mom!), I felt more comfortable about going to PT again. I had my first appointment in 6 weeks last Wednesday. I always feel so amazing after those! Like I can breathe and move my neck around. It’s been rough to go without PT. I got to tell my therapist about doing yoga and making it through about 20 minutes of very easy sequences. My hip did pretty well. My back does not like twisting. I took a painkiller immediately after yoga. I was really excited that I did as much as I could and that I have enough strength and stamina to do warrior poses and the hard part, raise up into them.

I don’t know what or why, emotionally, it’s been tough to handle having cancer, and super tough to be my son’s only parent. I mean, there’s co-parenting going on that’s amazing and makes me a better parent, but you know what I mean. At the end of the day, I’m still it. I know that being at home constantly has opened up some thinking space. I work my 40 hours or more and don’t have to commute. I have fewer distractions and more free time. We’ve had an intense weekend and some long talks. I’m looking forward to my palliative care appointment this Thursday via telehealth. I’m so glad we have that support!

Next appointments are in 4 weeks and not in-person. Hope you all are enjoying your time at home, and the awesome lack of traffic! Seriously, I could work from home long-term and be very happy with this set up! Let me know what shows you’ve been watching!

Air hugs and kisses!

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1-year check up April 3, 2020

March is a momentous month for me. The last year has felt so long and so quick all at the same time. I have so much to be grateful for. March 2019 I got my cancer diagnosis, found the house we bought, got engaged, got married, met who would become my oncologist, had emergency heart surgery and started a hospital stay where I agreed to putting rod in my femur.

Aside from some lingering back pain, March 2020 felt so much different. I feel really good. I don’t rely on ibuprofen all day to survive. I don’t cough. I can breathe and it doesn’t hurt. I can eat a lot of things that I couldn’t tolerate a year ago, like bananas and chocolate.

A year ago, I would never have guessed that I’d be directed to work from home full-time starting March 13th due to a viral pandemic.

A year ago, I had serious doubts that I’d still be alive for March 2020. With all the pain I endured, I didn’t know if I wanted to keep living. My everything hurt so bad then. I have a lot of sympathy for people who have MS, fibromyalgia, and any other painful, chronic condition. It takes a toll. Even my bad days now are difficult and emotionally draining. Every day, I’m thankful to be alive and well! And targeted treatment is very effective!

So for April’s checkup, I still had to go in to have my blood drawn the day before. My doctor let me skip my bone shot this month. I had appointments to see my providers via web call. Opposite of last month when I talked to lots of strangers, this time I only talked to the medical assistant who drew my blood. The chairs in the Cancer Center’s waiting room had been spaced apart from each other and double-seaters removed. Even people who came to the clinic in pairs could not sit very near to each other.

Blood work came back normal again! My anti-inflammatory marker rose slightly, and I might have had some anxiety about that. I did. I had a lot of it. With tears. My doctor and the secondary physician said not to worry. My back pain (was terrible that week!) could be throwing it off, and that it’s still really low. They are not worried. More tears of relief after seeing my doctor via online video appointment. It’s so reassuring to hear that! I also promised to take it easy because dang, I did too much the weekend before, and it took my back a week to recover from it!

Palliative care went well, and even over a web call, I still really enjoy those appointments! They’re so positive! We talked about all the good things about working from home where I can control my environment, i.e. cleanliness and hand-washing. It’s way less stressful than being at work. I love getting to sleep in. I don’t do it on purpose. I’m just sleeping better without the stress of making sure I get up on time every day. I super dig that the kitchen is sparkly every day! And I get to spend time with my favorite people and go on more walks with the dog than I normally do.

Take care everyone! Reach out when life feels overwhelming on top of the pandemic going on. We’re all feeling out of sorts and can relate to each other.

Jennifer

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11-month check up & scans March 6, 2020

I am way overdue on this post! You may scroll to the *** for the juicy, medical bits or keep reading about me talking to strangers, like Malcolm Gladwell suggests in his new book, Talking to Strangers.

The CoVID-19 pandemic got serious in Denver, and I started working from home on March 13th. I have to admit to feeling somewhat screened-out since then. I am not looking up at customers or co-workers throughout the day and getting a rest for my eyes. On top of that, having the virus on my mind and not being able to be at work to help my team was really stressful, especially the first week. I haven’t even been going to physical therapy for the last 2 weeks. I am maybe going to start again this week. My back is not happy with skipping sessions!

My leg/glute has gotten so much stronger! I’ve been going for challenging walks in the neighborhood and crushing it! Also, the dog LOVES having everyone home all day every day and getting daily walks, which we normally don’t do. We don’t normally have the time or energy to walk him after I’ve spent up to an hour commuting home, then we make dinner, clean up, and we’re both done for the day! Husband is really good about taking the dog to the park to play. Also, with the boy home doing remote learning, it’s easy to ask him to walk the dog when he’s done with school work.

Ok, ok, so back to medical stuff. I had CT and MRI scans done on Wednesday, March 4th. I leave my phone in the locker room when I go in for scans. It was the end of the day, and I met a couple other cancer patients in the waiting area. One of them really made me laugh! She has some obscure endocrine cancer, had smoked her whole life, and thought it ironic that I have lung cancer and didn’t smoke. She was like, “Of all the things!” She said she still smokes, just the wacky tabacky now. Lots of it! So funny. She swears that it kills cancer. She got a kick out of my hospital gown and giant hospital pants that fall off if I’m not careful. I had forgotten to bring non-metal clothing and had come straight from work. This funny patient said I was lucky to be able to keep working. She was right, and I sent out some gratitude for my health and wonderful employer. After seeing my IV, she and another patient recommended getting a port. My veins had NOT cooperated that day. They saw the nurse and hid! I also ran into one of my former workout buddies from the HIIT gym! She’s a PET Scan tech at the hospital, and we got to catch up. ❤

Scans were easy, as always. I had taken half a painkiller when I got to the hospital because my back can get pretty uncomfortable during the brain MRI. The tech brought me a fresh, warm blanket, then sealed in the warmth with my body temp blanket. Best MRI I’ve ever had. I was so comfortable!!!

Last time I had scans in December, I had a terrible reaction to the contrast and thought it was because I didn’t drink enough water. It wasn’t. I learned from my doctor on Friday at my check up that you can develop a sensitivity to the contrast, so he noted it in my chart and said that I’d get something to offset that next time (June). After my CT scan this time, I drank a bottle of water. I had another bottle of water in the car and a sparkling water. I drank them both on my drive home. Unfortunately, the muscle cramps in my back and chest that I experience from the contrast had already started in by the time I got to my car. Drinking more water helped me feel less yucky the next day. I still felt yucky that Thursday, made an appointment for PT at 1, and left work early.

I had some anxiety about scan results this time because one of my inflammation markers crept up in my blood levels on my February visit. My doctor said not to worry about it and we’d see what the scans showed. He sent me the results on Thursday morning around 10:45. I looked at them immediately and saw his comments on both that results were “Amazing!” I held back my happy tears. I was so relieved! I shared the news immediately with Husband and at PT later that afternoon. So happy!

On Friday, I had my monthly check up. Veins hid from the nurse again, so I got poked on the outside of my forearm by my wrist. Some months are better than others. Blood levels had normalized even more. I expected my iron to be low for two reasons: I had just had a period (yay for the quarterly period) and I switched to a mostly vegan diet in January. C went mostly vegetarian a week before me in January. He still eats dairy. My stomach seems much happier without it. We both still eat everything, on occasion, more as a treat than a regular staple. Bad cholesterol went down for both of us at our annual blood draw in February! Also, iron has stayed normal, not even low. 😀

Back to the doctor’s appointment! I had forgotten my phone at home that day and again went straight to the hospital from work. The Cancer Center was busy that day! Three Jennifers in the waiting room! I stood up multiple times and got, “No, not you yet,” from the nurses. Haha. Anyway, with no phone, I had brought my book, but I ended up talking to strangers that day. I met a woman who was kicking ass at colon cancer. I got some tips from another lady who had oxygen and recommended some nasal products. My nose is still crazy dry and had been bleeding A LOT that week. And then, I struck up a conversation with another young person in the room whose name is also Jennifer.

I had seen her there before. It’s easy to notice the young people in the room, since we’re not common. She goes by Jenny, and we talked the whole time between blood draw and doctor’s appointment, so not quite an hour. She also wasn’t on her phone and had a notebook out on her lap. Turns out she’s a teacher, was working on lesson plans, and has been living with cancer for 11 years! She had sought less traditional routes for treatment, so I picked her brain on acupuncture (she hadn’t tried it). She told me about some outdoorsy groups for cancer patients that she’s enjoyed, some through the hospital. I had told her how much I’m looking forward to hiking this summer and working really hard in PT. She told me about a cold laser treatment for nerve pain that she gets through her osteopath. My ears perked way up at something else I could try for my back. She experienced nerve damage in her neck as a result from radiation. I filed that information for later, too.

I got called back for my appointment and exchanged niceties with Jenny. I had just run to the bathroom and back when I heard footsteps approaching the room I was in. In walked C!!! ❤ 😀
He surprised me by coming to all of my appointments that afternoon. He said he hadn’t been in a while and thought it was time. Aww, it was a great surprise.

***
The doctor came in, and we went over my scan results. No changes in the bone tumors. The main tumor in my lung shrank more!!! Did you hear that??? I KNOW! Also, my fractured rib from Christmas Day 2018 has healed! It was still fractured when I had scans in December. I had a feeling it had healed because I hadn’t had any pain there during February. 😀 The doctor said that in the future, if my treatment pill is still keeping all other symptoms at bay, and the tumor starts growing, we can do a special kind of radiation to the tumor that has been proven to keep it shrinking, or at least not growing more. I am all for it! Love radiation! That stuff works!
***

I told my doctor that I had switched up my diet, and he was fully supportive! C and I asked about Coronavirus exposure and how much I should worry about it. The doc said not to worry too much. Wash my hands a lot. I told him that I do, and it’s dang near a problem sometimes. Haha. I’ve struggled with OCD since high school and obsess over everything my hands have touched before washing them, and when it’s really intense and things feel super out of control, I keep track of things everyone else has touched.

C came with me to get my bone shot and go to palliative care, which is always fun and a great way to end the day. We laughed a lot, and it was great for him to be there. My palliative care team asked how they could support him. He talked about how he struggles with hope and reality. They assured him that he’s looking at things the right way, and that we can hold hope together and keep it real. It was pretty cool!

I texted my doc today, and my next appointment will be via telephone this coming Friday. Told you I’m behind on posting.

Until then, wash your hands with soap often, disinfect your phone daily, and don’t touch your face!

Byeee!

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The Note – Grief Wave Warning

We’ve been doing some thorough cleaning around the house lately due to uninvited guests that stayed with us a few weeks: mice! First, Husband and I cleaned out the garage and found what had attracted them in his backcountry bag. He had left some energy bars in there on the bottom shelf of a unit, and OMG, we had to throw that bag out!

My anxiety has been a little higher than usual lately, especially the night we caught a mouse in the house. Also, one of my employees has been sick, and I’ve been so concerned! My mind goes immediately to cancer. The doctor she saw said gastritis, so I felt hugely relieved last Thursday. Up until then, I had trouble sleeping and decided to clean under the kitchen sink one night last week.

I had noticed droppings when getting the counter spray out. If I could have thrown out the underneath area of our kitchen sink, I would have! I had stored loose grocery bags down there, and they provided some great cover for those critters! I sprayed bleach and water mixture on everything, wiped up the floorboard dotted with droppings, then wiped the bottles stored under there, then the floor where the bottles had been while I cleaned. I get a little nutty sometimes about cleaning. Cleaning sufficiently tired me out and calmed my mind that night. I went to bed around 12:45, about 3 hours after I like to be asleep.

In the home office, Husband resituated our filing cabinets, so we can access them now. I had a box in the closet to unpack and decided this past Sunday that it was time. My good art supplies, paints and pencils, went in the top, and paperwork went in the bottom. I opened an unmarked, 9×12 envelope. Woof. It had a bunch of estate documents for Ex’s estate, not that there was much too it but a ton of debt.

The envelope also had a copy of the note he had left the morning he died.

Double woof.

Seeing his writing and unhelpful words stirred up some grief. Thinking about it now makes my eyes water.

“[Named friend] get all my tools and [the dog], if Little Guy can’t have him.

Bury me in the mountains.”

Yeah, for effing real.

I went to the bathroom and cried as quietly as I could. When I calmed down, I texted another widowed friend for support. Normally, I just grieve alone, and I’ve realized that I don’t have to. I have people.

Husband had been putting together another shelving unit in the garage and organizing more. He came in a little after I had calmed down. He took one look at me, I nodded, and he came over and put his arms around me.

I told him that I had run across Ex’s note. He said, “Oooh, that’s a lot!” I agreed. We sat down together and I explained that it reminded me of how frustrated the note made me feel. It just didn’t explain anything. I feel bad for Ex. He didn’t have an easy life, and he didn’t seek out help either. Also frustrating. He felt less-than a lot of the time, and other times, he could be so superior, like when it came to his work.

My husband asked me, “How old were you when you met him?”

I was 19, had just gotten my driver’s license and was about to graduate with my undergrad degree. He was 32, almost 33. Sigh. The foolish things we do when we’re young. I was so stubborn.

Husband then said, “If my sister were that age and dated someone that much older, what would you say?” (His sister is in her 30s. It was just an example.)

I was like, “I know. I know! No one was going to tell me ‘no’ or what to do at that time in my life.”

Anyway, we got married just after I turned 21, which I don’t recommend to anyone! We had Little Guy five years later. Got divorced 3 years after that, then Ex died 6 months later right after I had turned 30 and Little Guy had turned four.

I told Husband that I was glad for everything that I’d been through because it got me to where I am now. Who I am now. And I’m pretty dang happy!

Oh, and my friend called me back about an hour later. We had a good chat about things that we find that then whack us over the head with temporary sadness.

****

A couple days later, yesterday, I wondered why I’ve kept Ex’s note for so long. I suppose for Little Guy. Do I have to? I’ve told him a lot, and I think Little Guy would find the note as cold and unhelpful as I do. Why don’t I just let it go?

I think I’m going to let it go. It’s not like I’ll forget it. I have it documented elsewhere. Here, for example. I won’t have to worry about opening that envelope, which  I have now labeled!

Just let it go.

I feel lighter having made that decision.

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