Welcome to My Pity Party

This post was going to be an update on my healing process from the melanoma, but it took a little turn because I’m frumpy and grumpy and Grinchy and Scroogey today. That’s your warning to stop reading now if you all agog with holiday cheer and wish to stay that way.

Today I upgraded to a N8 processor for my cochlear implant. That is the outside part that rests behind my ear and connects via magnet in my skill and “talks” to my cochlea, allowing me to hear. I’m excited for the new technology and that it is smaller (yay! Less behind my ear is always welcome!). 

I went through the whole rigamarole, which includes learning about the new device, and most time consuming, going into the booth to check my hearing. We check with no devices, with one device, with both devices. We check for beeps and then word recognition. Then sentence recognition, and my nemesis “sentence recognition with background noise.” Let me back up a minute and say that I didn’t see my usual audiologist. I had to reschedule the appointment for today, but no one told me I wouldn’t be seeing the only audi I’ve seen during my entire cochlear implant world. That woman knows my massive struggles in the beginning, that I was a hybrid patient (first one done in the region, nice write up in the StL PD). She knows that I will never benefit from my cochlear implant the way others do, and we do not know why. We suspect I have auditory nerve damage that didn’t show up in the required MRI prior to authorization. Small whoops. Anyway, I was feeling off not having the one who figuratively held my hand for years. 

If you have hearing loss, you know that booth time is exhausting. When I first got my CI, they would map me (create and adjust my program), I’d live with it for a bit, then come back and go to the booth to see how I was doing. This was a routine that went on for a year. You are concentrating so hard to hear beeps and words and sentences that one….well at least I,…feel exhausted and I don’t believe I’ve ever left without a headache. Today was no different. At the end, the audi came in and said things looked good, not really any change, and that I am understanding about 75% of speech when there is background noise, and that is WONDERFUL as most patients don’t achieve that. Okay then.

Lemme tell you about background noise. This is not bar noise. This is not 250 middle schoolers in the cafeteria noise. It’s a few people at a table at a restaurant. Maybe my book club when we’ve finished discussing the book and are having several mini convos with each other. So for me to get 75% with mild background noise, I have to concentrate to the point of a headache, strain my ears, have no distractions (no washing dishes with the kids asking me where their homework is, no being at a new restaurant and looking around at it while someone talks to me). Oof. That feels like no way to live. By this evening, I was ready to toss my new processor (the N8) across the room. It is new technology and it will take time for my brain to acclimate, same as it did when I got my first processor. Everything sounds too loud; the the pan on the stove grate nearly sent me to my knees, and the kids gaming and chatting about it loudly nearly made me want to cry. This will pass. It is a phase to get me to better hearing. I know this. I KNOW THIS.

But when she told me I have 75% and I’m paraphrasing, but “isn’t that great”, I wanted to cry. Is that all I’ll ever get? (Yes, yes it is). As I get older, I expect to see “normal” age-related loss in addition to my wackadoo loss caused by genetics, ototoxic drugs, none of the above or a combo. My best hearing is behind me, and that is a big pill to swallow. This is as good as it gets.

I’m hoping to meeting a friend out for her birthday this weekend. She’s inviting other friends of hers that I don’t know. I already am anxious and have a lump in my throat with the worries that it will be too much for me, and then those old fears creep in: I won’t hear so I’ll kind of back off. Will they think I’m snobby? I’ll repeat something they say, for accuracy, and it will be comically wrong and I’ll be the ditzy friend. I’ll get a headache from trying to keep up. I won’t bother keeping up because I don’t want a headache. 

I say all of this knowing I’m beyond lucky to be a strong advocate for myself and to have taken this journey at all. To tell everyone I encounter “I can’t hear” and then repeat it when they forget. To position myself physically where I can hear the best in a group situation. To have amazing friends who look out for me when planning outings, so I can be part of them and not be miserable. I know how lucky I am. But today I felt crappy. 

I’m in a group on Facebook that basically supports those who struggle with their hearing loss. An older gentleman said he wasn’t sure why he was on there because his loss doesn’t define him and he’s doing well, etc. WELP. I wondered if he’d feel that way if he worked in a school lunchroom. Had meetings in various environments several times a week. Had to wash dishes and answer questions at the same time. Needed to look at my friends lips as we walked through a holiday light display, so I could “hear” what she was saying, not getting to see as much of the light display as I wanted. I made a pretty mild comment back that not everyone feels the way he does and if feels a little dismissive for him to say so much. Then I got a comment from someone on the same thread. I’ll get that to that in a second….

I’m fully aware that I’m sensitive today. Early audi appointment, forgot to change before heading to work at school (and therefore wore very uncomfortable boots, even if I DID look damn good), and was frustrated at my dentist appointment because my gums hurt and because I had to say HEEEEEYYYY, I HAD A MALIGNANT MELANOMA ON MY RIGHT BUTTOCK, SO CHECK MY MOUTH WELL FOR OTHERS. Then I let head go all George Bailey’s “Why do we have to have all these kids?!” to why is dinner necessary EVERY NIGHT to thinking I’ll never repaint the trim on my interior doors, to how it’s not my fault I don’t like coffee and why can’t Starbucks take it down a notch, to I’m 5 years younger than a coworker, but thought I was 25 because I think I’m still 30. So yeah, I read his post about ‘don’t let your hearing getcha down” and let it get to me. 

Then, this happened on the thread: 

Oy. Pulled the angry wind right out of my sails. Don’t get me wrong, I’m still in the throes of my pity party, but I also realize that this is so much bigger than me. My blog is my way to cope but also my way to advocate. I’m not having a high-horse moment of believing I’ve reached bazillions of vulnerable people, and have figuratively held their hands. But man, one person remembers a post that is 8+ years old and it helped her. And for tonight, that is enough.

PS: I took my cochlear processor off. I didn’t throw it, I didn’t set it down gently, and I did glare at it. And tonight I won’t be touching it, even with a 9 1/2′ pole.

PPS: As one who prides herself on proofreading and good grammar, I have no idea how this will read. I can’t proof my own stuff and this word vomit was way more a coping mechanism than a real blog post. I hope you can adjust your judgment this one time.

Her Hair is Growing Back, But She Is Not Fine

For October, Breast Cancer Awareness Month, I wanted to write about my friend and some of her journey. I don’t use her name, but I know that many of you know this person either by extension through me, or in real life. This was hard to write. It’s hard to think about. It’s impossible to imagine this could be me. Can you imagine if it were you? So many go through these battles daily. You never truly know what others are dealing with. Any more than others know what you are dealing with. While this is based on my friend, it really applies to all people dealing with chronic conditions and illnesses. Reach out to your people; friends with cancer or those whose smiling faces show no signs of anything wrong. You never know who you are helping. I hope this helps someone(s), too.

Her Hair is Growing Back But She Is Not Fine

Earlier this week I went with a friend to her oncology appointment. She’s completed her main treatments of chemo, radiation, and a mastectomy this past summer. Her breast cancer responded very well to the aggressive treatments, and now she takes medication daily to keep cancer at bay, as well as takes monthly infusions to keep her bones strong. She may take these medications, in some form/strength, for ten years. Today’s appointment was bloodwork to check many levels of many things, bloodwork that will tell her if she has any cancer in her system through a very fancy test (it can pick up cancer even if it is not presenting any symptoms and is not visible), to go over her current treatment plan, to make an appointment for future scans (to also screen her for any visible cancer recurrence), and to have the infusion. She says every time she goes back for these appointments it is triggering. Legit PTSD. 

Her hair is growing back. Her eyelashes and eyebrows are back. She’s back to work. To many, it appears her rigorous, highly-stressful, painful, exhausting journey is over. It is not. She is not fine. She is not “happily” living with cancer. One pill she takes daily suppresses her estrogen, because her cancer is estrogen-fed. The suppression of that hormone puts one into immediate menopause. What does that mean? Put very simply, at puberty women start their periods and their female hormones start going a little nuts as they figure out how to work in your body. I’m in perimenopause, the precursor to menopause. In peri, my hormones are saying, “Welp, you had your chance to have kids, so we are tired and are going to slow down. Our numbers will drop. You might feel kinda shitty and have things like hot flashes, night sweats, irritability, mood swings, dry skin, lack of libido, menopause belly (look it up…fun!), brittle hair, utter exhaustion, increased wrinkles,  and much, much more. But we TIRED and you are on your own.” Everyone is different and reacts differently as their hormones change. A family member found out she was already through menopause from a blood test. In hindsight there may have been some symptoms, but she isn’t sure. Most do get symptoms, however. As someone in peri, I take hormone replacement therapy (HRT). I have done very well with it, but still have symptoms that aren’t addressed. At one point I asked my primary doctor if it was normal to get super “rage-y” around the middle of my cycle. Like, rage-y where I wanted to kill my husband because I didn’t like how he made the bed. He nodded, coughed, then said, “let’s double your dosage.” It helped me, a lot. My friend can’t take HRT. To think that if I couldn’t, my dear husband might be dead. I don’t say that to be flippant as my rage was freaking real. Imagine if you had that and were told there is nothing we can do to make you feel better. That is my friend.

The sudden lack of estrogen also makes you achy in your joints. So my friend might wake up with a sore wrist or shoulder. Or stand up in the middle of the day and her hip aches. Her first thought is “the cancer is back and has spread”. This happens every.single.day. Multiple times a day. That is no way to live. The pills she takes make her exhausted. She works full time and has three children. She wants to sleep all of the time. She can’t. She’s a mom, wife, friend, daughter, and employee with obligations. She doesn’t want you to know she’s exhausted because she might see the fear in your eyes. The fear that she has, churning in her belly every.single.day. Is she tired because of the medicine? Because she’s 50? Because she’s in menopause? Is she sad because every day she wonders if the cancer is back or because she’s 50 or because she’s in menopause? Does she cry more than ever before because the cancer is back or because she’s 50 or because she’s in menopause? 

Today she asked about anti-depressants. Or, I should say, she beat around the bush until the doctor suggested it. They agreed on a medication and dosage, and went over expectations/side effects. Then moved on to other things. At the end of her appointment I asked the doctor if it was common to have depression in a patient like my friend. She said something to the effect of YES, of COURSE, you have been through so much, your body is tired. The mental game is long and the physical effects on your mental health are huge. My friend cried. She needed permission to feel sad. She NEEDED to feel that permission. Very Gen X. Fake it ’til you make it isn’t cutting it here.

She has lymphedema in her right arm, as it was her right breast that was removed, along with 31 sentinel lymph nodes in her armpit. Without the lymph nodes, her lymphatic system doesn’t work well and doesn’t drain the fluid from her lymphatic system. The lymphedema can come and go, and some days/weeks are worse than others. Sometimes her arm is very swollen, and looks noticeably larger than her other arm. That is the fluid build up. She wears a compression sleeve to help prevent this. She has cording in her arm that prevents her from raising it very high without massive tightness and pain. Sometimes she can’t move it above her shoulder. For this, she gets physical therapy. They massage the cording until it “pops” out. It sounds terrible and while I’ve not seen hers, the pictures I’ve seen online of cording look terrible, and painful. 

There is a machine she can get to help with the lymphedema. It is $7,000 and insurance “should” cover it, but they are making her purchase it first before they will definitively say it is covered. OR NOT. The company that makes the machine has a 30 day return policy. No way will her insurance have the claim dealt with before the 30-day return window. So she could be stuck with a machine and owe $7,000. What is she to do? Battling with her insurance wasn’t on her bingo card before her diagnosis. Now it is a top 10 menace, all the time.

Her hair is making her nuts. It seems like a small thing, right? Hair in exchange for life? But the short hair screams “I have cancer”. Sometimes, because she doesn’t want anyone to think she CHOSE her short hairstyle, she wears shirts about cancer so others will realize “ahhhh, that hair isn’t on purpose, she is fighting cancer.” Then feels guilty for wanting people to know that. 

The genuine compassion and loving fawning over her at diagnosis and during the nearly year-long main treatments is over. Many have stopped sending text messages, or gifts, or asking how she is doing. Gone are meal trains and offers to run to the store. Her friends and family need her to be better. They want her to be better. SHE wants to be better, but she is not okay. She doesn’t want the fawning, but doesn’t necessarily want people to think she’s back to normal. But saying she’s not back to normal makes it more real, you know? Fake it ’til you make it….that again isn’t cutting it. 

She is beyond grateful. She is proud of how she advocated for treatment when her first surgeon ignored her on three separate occasions. She is gracious, and giving and kind to all. She is an amazing person, and was first in line to be there for me when we discovered my melanoma was malignant. She is a walking inspirational quote. And she is not fine. 

She wasn’t sure about the idea of me posting this, but also wants people to know the good, bad, and ugly. We both know how important advocacy is. Others feel less alone, they get annual mammograms or wear more sunscreen or, like one family I know, established themselves with a dermatologist to get annual skin check ups. And as stated above, this isn’t all about my friend. This is for the every-woman/man living with cancer. Living with a chronic condition. Living with what may seem like an invisible illness. I hope by writing this it gives people to FEEL what they feel and BE in the place they are, at this moment. It isn’t always pretty. In fact, it is a lot of ugly. But there is such love there. There is such compassion there. There is hope. There are dreams of feeling better. There are winces and signs of relief at knowing it could be worse. She will be okay. She’ll have more good days than not. She’ll not think about cancer for 4 hours, then 8, and so on. She’ll acclimate to the changes in her body. She’ll seek support, and give it. She WILL be okay. But not yet, not today.

50SPF for Life

**Trigger warning: photos ahead**

Yesterday I was sore, sore, sore! My whole body felt like a huge rolling pin went over it. Could be from the position they had to get me in to do the surgery, and/or the anesthesia. I’m less sore today, but coughing and laughing are not really on the table. I’m shaky…could be from pain meds or anesthesia. I’m typo-ing like crazy and it is driving me nuts. I did sleep better last night, and rested a lot this morning. That helps! 

I want to be honest and upfront, which is why I’m including pictures. Warning. The incision isn’t pretty, Neither is the leg/butt around it. The melanoma isn’t pretty, either. I’ve cropped the heck out of these picks for **modesty**, but for reference the melanoma was about the size of a quarter and was flat. It looks raised in the picture, but it is not. 

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The front incision (right where my c-section scar is) feels very swollen and doesn’t really allow for sitting. Feels too big, hurts too much. The incision in the back, which goes kind of from my hip onto my butt, is 7.25” long (wut) and is also sore. I’m leaning on my right hip. Like a fancy lady would on a chaise lounge, if I were fancy or had a chaise lounge

I’ve heard from many who have had melanomas removed or know someone who has. I don’t know anyone who had lymph nodes removed as well. Is that an aggressive approach? Cautious? Is something from the initial melanoma or pathology more concerning than what I’ve heard about from friends? All questions I’m just coming up with. Next steps, as I understand it, all depend on pathology (7-10 days from 9/15). **Me on MyChart: REFRESH, REFRESH, REFRESH**

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So 80s tanning with baby oil, foil to reflect, iodine for color not good. Burn to a tan? Not good. 80s-90s tanning beds, not good. To answer some questions, I have no moles. I have no idea how long the melanoma was there. 

Todd has been amazing. Running the whole show and keeping positive. I’ve folded some laundry, cleaning my ceiling fan (I can’t help it!) an only vacuumed a bit. IYKYK. Thanks again to the awesome village of friends surrounding us. Everyone has been amazing!

RIGHT BUTTOCK and Blessings

I’ve really struggled how to put into words something that feels so foreign and surreal. Did I dream that cancer thing? Man, that was fast. The incisions I have and my sore booty tell me otherwise. But really…did this happen to me? Did I read it in a book? It was 19 days from spotting the melanoma to being declared free of cancer. Like, how? 

When my surgeon called with the results, he said all the best things: Low-risk tumor, low risk of recurrence, and my favorite part: if you are going to get a melanoma, the kind I got is the kind you want to get. I. Will. Take. That. WHEW. Immediate relief. When I read the pathology, lots of which was just medical jargon and I couldn’t decipher, I did get that very clearly I am a lucky duck. I also think if I read “RIGHT BUTTOCK” one more time in my life it will be too soon. I really was hoping they were going to go with “Right Outer Hip”. Not BUTT and GROIN. Get allll up in my biznass, doc. And nurses. And the anesthesiologist. And all the other people it took to take care of me. Just get on up in to all the places I try desperately to hide with clothes. 

Once the results registered with me, I went from relief to immediate embarrassment. Shit, maybe I shouldn’t have told EVERYONE. Maybe I should have waited for the final diagnosis. Maybe I shouldn’t use the term “cancer” as it was 19 days from start to finish. Maybe I can’t use the word cancer when I have a friend going on 15 months of with living with cancer. One just finishing 30 rounds of chemo and a surgery to go. A friend who is literally a warrior, but has no breasts, no hair and is rocking it. I feel like I should whisper it. Or not say it at all. Yes yes yes…I know what I’d be saying to me if I wasn’t me. I know my feelings are valid. I know ALL of that. But I can’t feel that. I just can’t accept that. Not just yet. 

How I’m doing: It is taking awhile to feel comfortable. Longer than I’d like. Sitting is still not fun. I prefer to lean to my left, the opposite side of my incisions. The incision in front where lymph nodes were taken is now barely bothering me. As it should be, since it was a shallow cut and only a couple of inches long. My seatbelt runs right across both incisions, so it’s taken me awhile to do more than a few errands at a time. I ended wearing myself out a week ago and going back on more regular doses of ibuprofen and ice packs and doing everything I could not to sit on that side. It helped. Archie keeps reminding me it hasn’t been that long since I had surgery. God love him. The doctor also said my exhaustion could be from pain, anesthesia, and not being able to get comfortable at night. He did NOT say, “lady, you are old. You’ll never have a good night’s sleep again.” #winning

I went on a girls’ trip with some of my book club friends this past weekend. Todd didn’t want me to drive because he knows the seatbelt didn’t feel great. I shoved an icepack between the seat/seatbelt and me, and I did great. Had a BLAST with my friends. Enjoyed the cooler temps, beautiful lake, hilarious games, celebrated 2 birthdays, all with the level of comfort that you only get with people you’ve known forever, and who have seen your RIGHT BUTTOCK. 

I do have to say, you know it is a good girls’ trip when you end up calling your doctor at 7am on a Saturday, and you leave the weekend with your hearing aid duct taped together. First, I woke up Saturday soaking wet around my RIGHT BUTTOCK/mid-section. I mean wet. This is a morning after drinking, so logically I was a little, ahem, not put together. I’m grabbing myself all over trying to feel what is wet and not, and discern how many holes I have and what might have come from where. A friend and I shared the bed and I woke her up and we were just stumped. Turns out I had a pocket of non-infected wound fluid that is normally absorbed by the body, but as I laid on the side of the incision for a few hours (as it is hurting less and less), it leaked out of the RIGHT BUTTOCK incision. The incision, I might add, that never once had a bandage on it, bled, had weeping, or anything of the sort. But 3 weeks after surgery, I’m like a hose on a hot day in summer. Gross. I’ll spare the details (and I know you are like um what? Have you spared any so far?! Fair). I’m still having some WOUND JUICE issues. I’ll work it out with my doctor.

As stated, I do feel incredible relief at my diagnosis. But with that, and now that things have slowed down, comes the reality and gravity and blessings and pure luck of the whole dang thang. Reality sucks…they say that for a reason!

Scares: there was niggling at the back of my head and heart through all of this. How many people in my world have had/have cancer? Foremost, I thought of my dad, who passed of esophageal cancer when I was 12. Archie is 11 1/2. That damned information kept poking at me, poking at me. And I just kept pushing it down. I literally didn’t have the bandwidth to process the similarities. How many people feel like I did, but then don’t get better? Why do I take on that guilt? How could I imagine leaving Todd to raise our kids like my mom raised us, without my father? Oh hell no. Unimaginable. 

Scares: One of my biggest fears was if I needed additional treatments, or things spread or got worse in any way, that my BFF would want to help me. She has her own health issues and needs to solely focus on making the best of each day, getting rest, handling her pain and fears, being the best employee, mom, and wife, and living “life with an illness.” And it would tear her apart to not be able to help, and it would tear me apart knowing she wanted to and couldn’t. Thanks the Gods that we don’t have to worry about that. 

Blessings: About 2 week ago, when I was watching the Taylor Swift game, I started getting crabby. Then finally told Todd I was going to bed (I am not a go-to-bed-early person). In bed I had a huge, whole-body cry, triggered by nothing I can figure, that lasted a good dang while. I don’t know that I did this when mom passed….I felt I absolutely had to keep it together to get us through the memorial, Archie’s birthday, Christmas, and Todd being out of town for 2 weeks immediately following her death. I still had a toddler at the time! Fast forward to a dear friend who was diagnosed with an illness about 15 months ago. No time to cry for that! Time to get busy and get her better. I was not going to NOT be there for her. I wouldn’t have it any other way, ever. But guess what? That shit catches up to you. I think I cried for a whole bunch of stuff that night. It was an OUTSTANDING cry. Snotty, puffy eyes, crying so hard you can’t breath and just overall cathartic. I woke up the next morning with a metaphorical skip in my step (an actual skip would lead me to falling and and getting a ‘help I can’t get up’ lifeline). My eyes were killing me, puffy, and I looked 100 years old. I’ll take it. I’d like to cry like this more often. If you are old enough, there is a great movie called Broadcast News and the lead, played by Holly Hunter, just sobs at her desk probably weekly. My kid self didn’t get it when I first watched it. My adult self is standing up and saluting her purge!

Blessings: a family member recently had a health scare and I was ready to pack up to be with them. Lots of back and forth about how things were going, and I finally headed that way. Got 30 minutes into the trip when I found out they were getting discharged. At my diagnosis, this person offered to come to me, immediately. This would be a huge hardship, given her day-to-day life, but I knew they meant it. Next-level family greatness right there. Also super weird as I thought I was helping her? I’m the helper, not the help-ee. 

Blessings: Thank you to the friends that tell me to shut up, sit down, and chill. And to those that don’t ask what I need and just bring stuff because they know I’ll never be able to ask for anything, and even if I could, I wouldn’t know where to begin. Thank you for the HUMOR that has made this bearable. Nothing like having shit go down on your RIGHT BUTTOCK to humble you. 

Blessings: In case it isn’t clear, I’m horrified that the melanoma tumor was on my RIGHT BUTTOCK. A friend asked for a pic of it and I sent one. It’s more my right hip and no laws were broken in what I sent. It just wasn’t the thing I ever wanted to send to anyone. EVER. This sweet friend turned around and sent me a pic of her RIGHT BUTTOCK, at the same angle, in an act of solidarity. THAT is a good friend.

Blessings: My community is so much bigger and generous than I ever knew. We were and are overwhelmed with how coworkers, friends, friends of friends, family, my kids’ teachers, and EVERYONE who rallied around us. I’m still overwhelmed. Cards, flowers, gift cards to make our lives easier, meals, books, magazines, funny stuff, serious stuff, texts and texts and texts checking on Todd, me, and the kids. I’m still overwhelmed. I want to write thank you notes, but It almost seems futile because how can I ever express how much their caring and kindnesses have meant to us?

Final blessing: Having met all the deductibles possible (this little tumor asshole cost about $40K), I’ll be getting a new hearing aid (without duct tape) which will be a nice upgrade, and the latest Cochlear processor. I’m about to be a hearing warrior! Or at least have the latest technology to hear as best as possible. Friends, don’t get excited. I’ll still mishear/not hear you and say “what?!” a lot. Sorry. 

Next steps: Check ups every 3 months, alternating with my surgeon and my dermatologist. Becoming a melanoma advocate (shout out to the friend who just established herself with a dermatological practice for her whole family to get checked. WOOHOO!). Lots more thoughts ahead, I’m sure. 

For now, at the end of the day I can say I’m okay. My family is okay. We will be diligent about sunscreen and body checks with the dermatologist. I’m okay. 

Home Sweet Home

I’m home and doing well. Healing is next, while we wait for pathology. They took 2 lymph nodes and the mean ol’ tumor. Everyone at Barnes West was fantastic. I felt well taken care of! They numbed up the area where the tumor was (WAS!!!! PEACE OUT!), but not the groin area where the lymph nodes were taken. That area is sore. Little cut on my lip from the breathing tube, and my throat is a bit sor as expected. Shout out to my community, friends, and family for all the well-wishes, and amazing gifts. looks like a florist shop, candy shop, library, gift card kiosk in here! Your generosity in spirit and in all ways is appreciated!

In Surgery

Just a quick update. Steph is in surgery and will be out in 3 hours give or take. Updates to follow as they are available. We appreciate everyone’s support!

What a Difference a Week Makes

One minute you are chilling on a holiday weekend, the next you are about to take a shower and before you get in, you decide to check out your back fat (true story). But what catches your eye is a quarter-ish sized thing on you leg. Is it part of a leaf that stuck on me from yard work earlier? A concentrated-looking bruise? You can’t twist to see it with your own eyes, only by looking in the mirror. You proceed with your shower, then try to take a pic of it yourself, then show your husband whose eyes become big as saucers as he says ‘you need to have that thing looked at.’ I asked him to take a picture. I knew immediately it was B.A.D. Fast forward to Tuesday (Monday was a holiday), and you call your derm and explain the sitch. They can see you late October. You go to the patient portal, send a picture, and you have an appointment an hour later. You walk out having had a punch biopsy and are just a few minutes late to work. Results in 7-10 days. 

Four days later, about 1/2 an hour before work, you get the news: malignant melanoma. Ok. Ok. Ok. Wait, what? Ok. Ok. Ok. What is next? “Pick a surgical oncologist so we can send pathology over today. And, our offices close at 1pm.” That gave me three hours, 2 1/2 of which I would be in the cafeteria, dealing with middle schoolers. I start the calls/texts/emails trying to make a choice. A former Book-clubber friend’s husband is a big wig fancy pants doctor at Barnes/Siteman and more. His email signature is longer than my hand. The book club friend always offered to us the opportunity to contact him if we needed a doctor recommendation. I have done that a handful of times over the years, looking for doctors for friends. I contacted him, and clearly was confused by his hand-long signature of fanciness, that I was shocked when he said “this is literally how I make a living.” He had me scheduled for Monday the 11th and got the path from my derm before I could blink. 

In 3 hours I went from diagnosis to having a consult scheduled and telling my boss I wouldn’t be in on Monday, and why. And I worked! Whirl.Wind. 

I hoped to hear that the melanoma could be removed in-office, with maybe a Mohs procedure, where they shave the melanoma down until they get clear margins, go a little further, then call it good. All done with local anesthetic. 

I was told instead that I would be going to the hospital, and under general anesthesia (outpatient) they would remove the “tumor” (I shuddered when he said that word) and clear margins of 2cm around it on the surface, and regarding depth, remove it down to the muscle. Hopefully that is precautionary. They are also taking a corresponding lymph node that will tell if the tumor/cancer has spread. The punch biopsy at the derm’s office showed that the tumor tested was all malignant, therefore  he couldn’t really give me a stage because they don’t know how much deeper it goes. 

So, I have cancer. That is nuts. 

I’ll end up with about a 6 inch scar around the tumor area. Recovery is take it easy all weekend, then see how things go. My work is on my feet, and I’m jostled all the time by kids, so I’m taking at least 2 days the following week off, then will reevaluate. I got FMLA papers today. 

We came away knowing it needs to be removed, and not much more. Pathology from that should take a week, and then we’ll have firm answers and a treatment plan, if necessary. 

Surgery is this Friday. It is a week ago today that I saw my dermatologist. Whirl. Wind.

I have not looked up treatment plans, if warranted. I’ve instead been making sure my kids are handled on Friday (they are) and that their therapists are aware of what is going on. I’ve contacted all of Archie’s teachers, which are also my coworkers (ugh) to have them keep an extra eye on my very stoic, but sensitive, mama’s boy. I also worry about the kids at school finding out. Some of my lunch buddies are sensitive kids. And/or just tiny humans that have feelings….it doesn’t take being sensitive to have this mess with you. 

The overlap of my work, my child’s school, me being that school’s parent group president….lots of weird overlap. But lots of kindness and support. I’m so happy Archie is there and he has so many eyes on him. I have not yet contacted Lucy’s teachers/school, as I have not had the time. One of my concerns are my lunchroom friends finding out and struggling. 😦

I called a friend today to ask “so, I have cancer, right? Like be honest, I know it is a weird question” She said yes. I called another friend with the same question and got the same answer. I don’t know if I’m in denial, or I consider skin cancer less-than other cancers (I would never say that about someone else with this, but with me it feels different, right or wrong).  A friend thought something was wrong with her breast and her doctor dismissed her 3 times. She had to fight to get care the care she needed for her breast cancer.  Another person went through months of discomfort before seeing a doctor and getting his diagnosis. Cancer or not (though yes, it is), that word “tumor” shook me up. That my doctor can’t tell me what is next or that this is no big deal, shakes me up. 

My kids know cancer as what killed my dad, and what a dear family friend has dealt with for a year. That is their experience, and that is the lens through which they see my situation. Not sure how to feel about that. 

How am I doing? No clue. Truly. Haven’t wrapped my head around it at all. I know it is weird being the one having something and looking to others for help, vs the other way around. I for sure prefer being the helper, not the one needed help. Happy Tuesday. 

Year Three

Dear Mom,

I dream about you. Sometimes it is vivid, and I can hear your voice. Sometimes I just know you are there. I think about what you are missing. What I am missing. Our late-night talks. How I’m now older now than you were when you were widowed with 3 kids. Could I handle that? I’m incredibly grateful you haven’t had to witness this pandemic, and be isolated from all of us, or stranded at home, or worse, taken ill by Covid. If all of that didn’t kill you, worrying about us and the world might have. I’m selfishly grateful I don’t have to add caring for you to my List of Worries. And then immediately I feel guilty.

You would marvel at what a lovely young woman Lucy is becoming. You would sympathize and secretly smirk about the challenges I have as her mom. You would be so proud of Archie’s accomplishments, and in awe of what a little man he was born to be. He wants a bundt cake for his birthday cake because he’s 8 going on 80! It’s your lemon cake recipe, that we make with so much love. You would be sympathetic and empathetic to our pandemic/schooling struggles, putting your own second, third, or fourth or last.

I miss having a MOM. The one who wants to hear the mundane tales of your life. That laughs and delights in your children’s’ accomplishments, however big or small. Who says your child is just like this person or that, people you can’t quite remember, or remember well enough to justify a comparison. I miss your snorty laugh, the way you said “precious” when referring to the kids, and the sarcastic eye-rolling look you gave me above your glasses. I miss how you watched me pack the dishwasher, watched me turn my back and leave, then repacked it. It was a ritual. Only you said my name with two syllables….Steph-nee. I might not miss that, but I sure smile when I think of it.

Not having you here makes me tired and sad, guilty for not being grateful for what I DO have. Yet, I grew up with grandparents, aunts, and uncles in our daily lives. They came to every birthday, recital, game, event. My kids don’t have that and OMG it makes me so damn mad. How much would they have loved an Uncle Earl with his Christmas box? Granny laughing at me in dance class? Poppa and Kathy ALWAYS showing up, being present, being part of our lives. So many people loved you, and in kind, us. We were so lucky.

I’m abundantly thankful for our neighborhood friends, and our awesome friends-like-family. How much you would have loved this for us. It would comfort you, not living up here, to know we are cherished by some great local friends and family. They have made the pandemic bearable, and help us keep our sanity. All of this has reminded us vividly, if not forcibly, what is truly important. Perspective and all.

This year isn’t about sobbing, or lashing out, or binging Hallmark movies…or whatever weird way my heart/mind determines I need to grieve. This year, marking the third without you, I feel great love and nostalgia and memories. I feel that tugging at my heartstrings when I think of you, and put out your Christmas decorations. In that first year, I so desperately wanted that tugging, and not the feeling that my heart was being ripped out of my body. It’s definitely more of a tugging, now.

Soldiering on, honoring you, doing my best to pass your awesomeness down to your grands,

Stephanie

Take Me Out to the Ballgame

Two years. I can’t believe it has been two years since we lost mom. I remember when my therapist said it really takes two years to grieve a person, not the 6 months society gives you. So is this it? Am I done?

I have amazing memories. I was privileged to have precious, tender, quality moments with my mom at the very end. I remember everything about her. Sometimes I recall minute details/mannerisms/smells/expressions that I’ve never shared, and wonder if she would have recognized them as her own. Yet sometimes those same memories are all just fuzzy and seem out of reach.

I will never get over the injustice of her missing out on her grandkids’ lives. How much time is enough time with a grandparent? Of course kids and grandkids are meant to bury grandparents, but dammit….so soon? Injustice or just stupid circle of life? Bah humbug.

The heartbreak, as I once hoped, has definitely turned less into “break” and more into a tugging of my heart strings. I have so many sweet memories of an incredibly strong woman, selfless to the very end, unfathomably courageous, lovely, funny, and just the best GG in the world.

I wrote once that I lost my center when she died. I still wonder about that. When we lose someone, people talk about how much time it takes to “get over” something. I don’t believe in those words when it comes to loss like this. Nor do I believe that we regain what we lost. When your core is shaken, when your North Star is dimmed, when your example of what is right and what is love is gone….man, I don’t know. A new center, star, love doesn’t just jump in to take the place. I’m not sure how that happens. If that even happens. Maybe it has and I just don’t realize it. Maybe not.

Gone are the days that when I mention GG/mom that my kids tense up, eyebrows raised, breath held, to see if I’ll cry. There is a little pause, just to make sure it’s all good, then the thought/story/memory is completed and we keep going. We do not move on, but we do keep going.

After decorating the Christmas tree last year, I tried to move it a bit and accidentally knocked the whole thing over. Fearful that I broke ornaments from mom to me, or ornaments that were mom’s, and just moody about the whole damned holiday and death anniversary situations, I fell into puddle of ugly tears. My tears lead to the kids crying, which lead to the kids and me crying in a hugging heap amongst the broken ornaments and fallen tree (Todd escaped the fiasco as he was at work). After cleaning up the wreckage (literally and figuratively), Archie made me a new ornament, to replace the lost ones. It is a simple heart, with the words “I love GG!” on it. I bawled again, but he understood that these were “joy tears.” Tonight he reminded me he made that back when I was “so sad and mad.” Oh, buddy. How has all of this changed our relationship? My parenting? What has MY grief done to my family?

At mom’s memorial I gave a heart-felt eulogy, fueled by caffeine, a little anti-anxiety medicine, and my hardcore efforts to not make eye contact with anyone in the congregation. I was so unsure of my ability to do it, that I had set up a signal with the preacher….so he’d know whether to introduce me or move on to the next part of the memorial. In the end, I gave him the thumb’s up, I did the eulogy, did not cry, and am pretty sure I didn’t screw it up. Honestly, it is a little fuzzy to me, along with that whole day, and some days before and after. Regardless, standing up in front of her loved ones and friends, in the church she’d loved for over 50 years….I have never done anything for which I am more proud. We ended the memorial by all singing Take Me Out to the Ballgame. I think it was unexpected, as intended. I saw smiles of surprise and appreciation, tears of sadness and unconditional love, and friends/family swaying to the music and remembering my mom.

We put up at least a dozen cardinal bird/St. Louis Cardinals ornaments on the tree last night. Today I’ll wear Cardinal red to honor her. I’ll interrupt my loop of Christmas music to listen to Take Me Out to the Ballgame a few times (the one below is a fave). I’ll end the day more nostalgic than sad, I hope, and then, as one does, keep moving on.

Beasts and Tornados

Mom passed on November 25, 2017. Of course I have to write something (writing = therapy). I know this isn’t for everyone…writing stuff like this or reading stuff like this. But, it works for me.

I miss her…giant understatement. I miss who I was when she was here. I miss the GG she was to my kids. I miss the (mutually) adoring relationship she had with Todd. I miss her advice, her wisdom, our 2-hour conversations that almost always started with one of us saying “I just wanted to tell you one thing really fast…” Those convos were so damned grounding and therapeutic. No one cares about your mundane life more than your mom. She listened to and cared about every detail. I wish I could tell her about the past year. She sure would relish the stories of Archie the Old Man, and delight in Lucy’s sense of humor and the young lady she is becoming. I constantly found myself looking for her advice to get through the past year, but she wasn’t there to give it.

I wrote once that I couldn’t wait to for the day for when memories of her tugged at my heart strings, versus stuck a knife through my heart. I’m more there than not. My therapist told me society gives us 6 weeks to grieve. I completely agree with that. I didn’t even know my own name for 6 weeks; I certainly wasn’t anywhere near being “done” grieving. But people are done patting you on the head by then. Your grief makes them uncomfortable. They need you to move on. And that IS understandable, if completely unrealistic. My therapist said that in reality, it takes 2 years. But 2 years to what? Be done grieving? Find your new normal? There is no “new” normal. I am forever changed. I just hope I am changing in a way that makes me grow, and not become stagnant or worse, wither.

I’ve lost a lot of what centered me. I lost my dad when I was young; too young to know how my life is changed from his death, outside of the obvious “didn’t have a dad around” stuff. But this year…whew. I knew exactly what I was losing. I have no living parents (nothing worse than an old lady orphan!). She was an only child. My kids have no grandparents on my side. No grandmothers. I have no childhood home to visit (we sold it this summer). There IS no one above me in the hierarchy of my family. My Christmases have been at one house for over 40 years. We are working on new traditions, here at home. But those will take time to create. This sounds so super silly…but there is no one to buy me a present at the holidays, outside of Todd. Isn’t that just weird? It FEELS weird. Who is going to buy me stupid socks?? Who is going to ignore the “from” on the tag and write “love?” And of course it isn’t about the present. (**And please don’t go buy me socks…**)

Grief is a fickle, devious, shitty, and shifty beast. Not only does he hurt you in ways you didn’t think possible, and often throws the ugly cry your way (most often when you are in public), he makes it so that others around you do not know how to act, what to say, what to do. I’m still angry about some of that. I don’t know if I should be or not, but I am. Oh, how I’ve judged some of those people. AM judging those people. Those who didn’t know what to say, said nothing. Or maybe some just said nothing because they thought I was fine. Or, maybe they just said nothing. “Nothing” stinks. My circle became small. I didn’t know how to “be” in my own world. I didn’t know how to meld life before she passed with my life after. How could they both exist at the same time? It is still a struggle. I’ve got 30 lbs around my middle to show for it.

I got out our Christmas decorations a few days ago and tried to figure out why it looked like a drunk tornado packed up my precious things

New engraving. Don’t think I don’t notice how it doesn’t match. SMH

 

last year. I was the tornado. We made it through Thanksgiving, Archie’s birthday, 2-weeks of Todd traveling (he had to fly in for the memorial, and back out the next day), Christmas, New Year’s, and several trips to Springfield. All in about 5 weeks. As time passed, I survived on no sleep, predictable Hallmark movies, and the fact that my kids were cared for every day in school, and every night by Todd. I only handled what I could, which didn’t seem like much. I threw what I knew out the window and started volunteering full-time in the out-of-my-comfort-zone world of local politics. I think I had to start something new to get through the old. I can not thank and love my husband more than I have and do. He let me “you do you” and work my way through things, my way, even if it made no sense at the time. He encouraged me, supported me, and held me together, and us together as a family. His own mom passed on Christmas Eve a few years ago. We’ve been dealt a hand, for sure.

There have been some amazing highs. There are the friends who constantly checked in, and those who simply said “today is horrible and that is okay.” Several friends shared their own stories of grief and loss with me. The “I couldn’t get out of bed for a week” kind of stories. How brave and kind and vulnerable of them to open up old wounds in an effort to help me with my own. These people are old friends, new friends, people I don’t know very well at all. These people are amazing, courageous, and beautiful. There are those who shared stories about my mother. Those are just the bestest. I had an elementary school friend just tell me recently that he remembered my mom from school…probably volunteering in some way. I savor these tidbits. There isn’t one too small.

I had the privilege of writing mom’s obituary. It was one of the greatest honors of my life. We had an absolutely lovely memorial service for mom last December. Speaking at that memorial l was a feat fueled by determination, the sense of inflated ability that only shock, grief, and sleeplessness can induce, and one tiny Xanax. We ended her service by singing Take Me Out the Ballgame. I think she would have gotten a kick out of that.

Tomorrow we are going to honor my mom by wearing cardinal red, and going down to Bush stadium to find mom’s brick. It says, “Mama Bird.”