Support Can Be Beautiful

(and it sure has been for me)

When someone we love encounters any speed bump in life, the impulse to solve their problem or take their pain can feel crippling at times because it’s not possible, even though we wish it were so. On this side of heaven, we will suffer, full stop.

I am a woman rich in friends and family who have been incredibly supportive during this odd time of life. Chief among my cheering squad and support team has been my rock, my Beloved. He has unwaveringly stood by my side, asked questions I wouldn’t think to ask, encouraged me when I was sad, assured me that I was still beautiful regardless of the number of boobs with which I was left by the end of this, and whether or not they were the same size. He held space for me to be sad, sat with me when we were both nervous, and just allowed me to feel the feelings as I felt them for however long I needed to feel them. He took on as much as he could take on, and was a soft spot for me to land when I had to take on the rest alone. And of course, because I love Jesus, I know I was never alone, but I’m talking about the physical experiences and medical needs.

My friends and family will never know what their kindnesses meant to me. There are so many people who reached out, and in doing so, they made me remember that I wasn’t alone. They were God’s hands and feet to me during this process.

As I want to help others who come behind me, I’m sharing what was helpful to me, since I was so well supported, and what I would recommend as both a patient and remind myself to do as a friend (based on my experience with cancer).

  • Texts are great. Why? Sometimes patients have to share so much over the phone or have so many appointments that having a sweet text come in is just comforting. It’s always nice to know you’re on someone’s mind. I was often too mentally exhausted to want to speak to anyone. Especially right after diagnosis. I tend to turtle-in and retreat until I feel safe again. I suspect I’m not alone in this.
  • Cards and letters are great. They encourage and can be re-read in low moments.
  • It’s tempting to rush in and give help right away, and I was lucky in that I had tons of support right away. But cancer is also a marathon, not a sprint, and sometimes we won’t need help right away, but could really use a meal or a visit or a note a month down the road. For example, I was diagnosed in May, but most of August and September was in significant pain and fatigue from radiation. Was super grateful for a dinner brought by then, and for those who continued to check in.
  • It can be awkward (for both sides) not knowing what to say. Here are some ideas of what worked for me and allowed me to share or not share as I felt able: “How are your spirits today?”; “How is your pain level?” ;”Do you want to go for a short walk?” ; “I’ve been thinking of you and want to know if there is anything specific I can pray for.”
  • As a patient, it’s also hard to say the following, because you don’t want to hurt someone’s feelings or be a drag on the friendship, but here are things I wanted to say sometimes: “I want to see you, but I am so slap worn out that I’d rather be in bed.” ; “I have nothing to give you right now, but please still check on me, because I’m feeling fragile and need to know you care.”
  • Ideas for how to help/love/serve?
    • Gift cards for Door Dash or Uber Eats are fabulous because they can be used by anyone in the house.
    • Gift cards or sweat equity for yard work or housework or home caring- e.g. if it’s fall and you’re decorating your porch, grab a pumpkin for someone who isn’t feeling well. Or, if it’s Christmas time and you can afford it, grab an extra wreath for their door.
    • If you have a tangible gift or service, just bring it or do it – do this rather than asking if they need anything. I almost always said I didn’t need anything because I didn’t NEED anything–or couldn’t think of a need offhand. But often those things we don’t need are still nice. “I’m bringing you dinner tomorrow. Do you have any allergies? Oh, tomorrow doesn’t work? Cool. I’ll freeze it and bring it by and you can eat it whenever.”; “I am taking your kids to the park and to ice cream tomorrow at 2 if that works for you.”; “These were my favorite reads over the summer, here. NO rush getting them back to me.” ; “I’m going to Costco. Do you need coffee, dog food, etc.”; “I’m dropping off margaritas in 20 minutes.” ; “I’m going to have a pedicure this Wednesday evening. Can I make an appt for you to come too?”
  • By far, though, the biggest blessing was simply receiving any acknowledgement done in love. Truly. My feelings were very hurt when some people didn’t acknowledge what I was going through. But this was ever so eclipsed by those who did. Any gesture is better than nothing at all. I promise.
  • Lastly, it was drilled into me to write thank you notes to people. “If you can accept the gift, you can write a thank you.” In theory, this is true. With the exhaustion of cancer, I often fell short in this department and felt so badly about it. Please know that your friend is very much grateful for anything you give. When they are feeling better, I know they will love you back in kind.

Topless and Toasted

(radiation therapy)

The first day of radiation, I walked in, got my temperature checked, and gave an attestation to the nurse at the door that, other than cancer, I was the picture of health. I entered the dressing room, changed, and sat in the waiting room with the other radiation customers. It’s in this instant that I felt the ugly fullness of cancer’s grasp and I was emotional on behalf of the people in that room who had cancer. Over my weeks of treatment, I sat among some who were going through painful chemo or immunotherapy treatments, as well as radiation. Their visible weariness pained me on their behalf. I felt lucky, guilty, even for my relative ease. Perspective. I chatted with a dear woman who had lung cancer, despite never having smoked (more common than you might think). We just talked about her grandchildren as she sat with her eyes closed and a smile on her face. I sat near a guy who was on his 22nd of 40 treatments, but he was grateful they didn’t hurt. I sat among other breast cancer patients. The Cancer Club is a club no one wishes to join, but as I sat among the fellow sojourners, I felt the powerful presence of the grace of God. Everyone there had families, stories, wishes, hopes, dreams. And cancer. Each, in their own way, was living with cancer – managing the speed bump or road block handed to them one treatment at a time with courage and grace.

As I entered the radiation suite (it sounds grander than it was), I lay in the same position as in my sim appointment, arms up, head turned, keeping company with 3 of the kindest people on the planet. They would ALWAYS ask me how I was, whether I needed a blanket (always no thank you!), and verbally walked me through every part of the process. Then they would yell out a bunch of coordinates and roll my body into just the right position (millimeters of adjustment), and leave for the safety of the radiation booth. I had to hold my breath during each 15-30 second blast shot zap whatever it is when they shoot cancer causing beams into your body which are used to kill cancer. Why? Because my tumor was on the left side, and friends, under your left breast and left chest wall and left lung is your heart. They had me hold my breath to protect my heart. The techs even put a fancy device right near my diaphragm to measure how I was breathing, and I was instructed to either inhale or exhale just a bit until I was holding in just the right amount of air.

And that was it. The machine whirred, I held my breath, and in less than 10 minutes, it was over. Repeat x5. Each week.

Oh, and at that time, it was impressed upon me that I needed to begin to protect my skin from the effects of radiation. Time to lube the boob. Apparently skin breakdown occurs (if it’s going to) after about 2 weeks in, but you’re supposed to start your skin protection before then. So, I bought the recommended vitamin E oil, and some other creams, and moisturized the whole left side of my chest 3x a day from day one.

Also, as a member of the bustier side of people with breasts, I had to get used to a non-underwire existence. This was actually suckier than you might think, because either you go the sports bra route which squishes them into unibreastdom, or find soft “normal” unwired bras which give the support of a limp noodle. Both of these options look so fetching under one’s clothes. BUT the key is they didn’t want any wires causing skin breakdown on already impacted skin. My poor husband said nothing as all the packages from Walmart, Nordstrom Rack, and Zulily came in for me to find bra Nirvana. Related: there is no bra Nirvana.

Reader, I’m so happy to be back to more supportive bras these days.

It’s the little things. And speaking of the little things, that’s where I’ll pick up again next.

Radiation

(oh, the ear worms)

When I began radiation, two songs kept playing in my mind, because I am, apparently, weird. I heard Queen’s Radio Ga Ga (the chorus only, because that’s what makes it an ear worm) repeatedly in my head. And for younger folks, I also heard the chorus of Imagine Dragons’ “Radioactive” rolling around in my head.

Why, Lord?

I had healed for about three weeks when our most of our little family, including the dogs, drove down to the Oregon Coast for a much needed vacation. It wasn’t so much a scheduled vacation with lots of things to do as it was an exhale–time to relax and enjoy the beauty, take walks, and simply be. Up to that point, our whole late spring and summer were busy with cancer: diagnosis, appointments, and surgery. The following Monday, I was scheduled to have my radiation follow up appointment, when the Radiology Oncologist would give me my plan, based on my path report. Gratefully, my pathology showed that they got the cancer they were chasing and I had clear margins surrounding it (no microinvasions). However, the Friday prior to that on the last day of our trip, we received a call that my mother in law was gravely ill, and my husband needed to leave to be with her right away. I wanted to go, too, but he was adamant that I wouldn’t miss my meeting with the doctor. So, I stayed, with plans to fly out as soon as my appointment was finished. I’m so glad he got to go when he did, because my mother in law passed away right before my appointment. I hated being away from him and the rest of the family during this time, but wanted to honor his wishes that I get my treatment started as soon as possible. I had wanted to be finished with radiation before my school year started, if possible, so I wouldn’t have to juggle. Here’s where I believe God intervened, holding those treatments in perfect timing. Had I already been in the midst of treatments, it would not have been good for me to skip them for travel (or probably even to travel at all). But since I hadn’t yet begun, I was free to participate in the very important (to me) funeral planning and subsequent service for my mother in law.

I began radiation the Monday after we returned from the funeral.

I was prescribed twenty visits of radiation (or XRT as the cool kids abbreviate it), with the first 15 being broad blasts to the entire breast area, and the last five being a “boost” (it made me nervous to hear the words “boost” and “radiation” in the same sentence) to the tumor site, itself.

The first part of radiation treatment is the “sim” visit. The sim visit is the set up for all of the subsequent appointments. For me, that meant lying down on a table, with my shirt off, and my arms over my head, in arm holders, head turned slightly to the right. Everyone was super nice, but I must share that lying like that felt very vulnerable.

It’s in this position that I received my radiation tattoos. These were landmarks, if you will, to help the radiology techs line up the blast zone radiation treatment area. I received pinpoint tattoos on the lateral sides of my chest, under my arms, and one right between the girls, on my sternum. These didn’t hurt, and one is barely noticeable. The one on my sternum is pretty noticeable, but that’s okay. It’s a reminder that I had cancer, and now I don’t.

The sim appointment took under an hour, and then my daily appointments were set up. Monday through Friday, about 15 minutes each day, except on Thursdays when I would have a doctor visit right after radiation. Reader: that’s when they would check to see how “well done” my boob was baked. After that, I visited the nurse who told me which lotions to purchase to protect the skin in that area. She noted that everyone reacted differently. Some people had no skin breakdown at all, and others basically got a sunburn to the area. Guess which one I was?

And that’s where we’ll end it for today. Up next: the actual treatments.

In Which I Get Antennae

Part 5 – Surgery

Well, sort of.

In order to prepare for surgery, I had to have a bracketing procedure, to guide the surgeons specifically to the tumor area. Because, remember, it was small, and probably didn’t look much different to the eye than all the other tissue in its environs. But they needed to be able to not only get the tumor, but take margins around it, as well, to check for invasive cancer.

Trigger warning for squeamish ones: I had to have this done under compression, kind of like how my biopsy was done. *”Dig if you will the picture…” of me standing in front of a 3D mammography machine, squeezed in ouchly snuggly, not moving, and receiving not one, but two long-ass needles around the target area, acting just like little orange batons guiding in an airplane…”can you my darling, can you picture this?”

Cool. Except for the 4 hours before surgery, know what I had hanging out of ol’ Lefty? Feelers. Antennae. Thankfully the surgeon would remove these while I was in surgery, so I didn’t have to become a pupa.

I have to give it to the medical assistant who was with me that day in the mammography suite. She rigged up a little frame out of the bottom of a styrofoam cup and added a whole.bunch.of.tape. to make sure those suckers didn’t move. Because the only thing worse than boob antennae is boob antennae which get bumped or jostled out of place.

And because it’s not enough fun to experience both pre-op and surgery at the same location, My antennae and I had to be transported from the mammography suite via cabulance to the actual hospital where I’d have my lumpectomy.

About 30 minutes after I got to the final destination, my beloved came, with an abundance of PPE. Poor guy steamed up his shield a few times. I’m so glad he was with me.

After 5 people came in and asked for my name and birthdate, and what medications did I take, and if I knew what they were doing and did I have any questions, the anesthesiologist came in. These just may be my favorite people. I mean, sleep, am I right? I told them I tended to be pukey with anesthesia, and they gave me every anti-nausea drug known to man. Good people, those anesthesiologists.

Next thing I knew, I was in recovery, and taking sips of water.

No. More. Antennae. Thank you, Jesus.

I was discharged less than an hour later.

No big dressing, no drama, just a big blue stripe of glue 1/2 way around my *”gloriola”. Also, a few tiny ice packs, a few oxy, and tylenol.

How lucky was I? I mean it.

Here’s where I really do give thanks for this simple (not necessarily easy) procedure. I was in and out in 6 hours. Had I undergone a mastectomy, the stay might have been at least overnight, and I would have been sent home with drains. But for me? Ace bandage around the sports bra and dreamland for an evening and part of the next day. I even showered the next day.

I was to have about three weeks to recover, and then I would begin radiation treatments, which is where we’ll pick up again. #summerofhealing.

*(apologies to Prince and Seinfeld)

Genes, Genes, the Magical Fruit

(So this is cancer, part 4)

Turns out I had one more person on my team – the genetic oncology nurse practitioner. She was lovely and so patient with us. Basically, she took all my family history, and turned it into a family tree of the probabilities for disease and death. She also explained the fact that when I chose to get a genetic panel, I wasn’t just looking for BrCA1 or BrCA2, we were looking for other genes which could be culprits in both breast and other cancers. Aside: BrCA = Br stands for breast, and CA stands for cancer. Not only was this testing important for me, if I carried any of these genes, I had passed them on to my kids.

If I was positive for any of the let’s just call them “shitty” genes, then my plan would change from lumpectomy with radiation and Tamoxifen to double mastectomy. Why? Because the likelihood of recurrence would be significant. Now, a double mastectomy was not something I looked forward to, but some of my friends had done well with them, so I figured I would, too. I was learning and still am learning to keep my heart and hands open. I control next to nothing except my responses in life.

Thankfully, all genetics were negative for cancer causing genes.

As thankful as I was about this – and I was – I was also filled with a bit of guilt and shame that I hadn’t treated my body better, and that probably meant that I caused my cancer. I mean, if it wasn’t genetic, then???????? Environmental, anyone? I’m sharing this thinking because I am sure I’m not the only person who has gone there, and it’s a hard place to be. Here I was given this incredible body, and because I love Taco Bell, and have a hard time saying no to comfort eating at all times, but especially during COVID-19, I gave myself cancer.

No. It’s not healthy to think that way. I knew at a brain level that this was flawed thinking, but my heart was still so sad. Thankfully my husband and a few friends with whom I shared these shameful, embarrassing feelings told me that if cancer were caused by being heavier than usual, no thin people would get it; conversely only fat people would get it. And we know that’s not true. And furthermore, no one deserves cancer -fat, thin, young, old, NO ONE. Again, I’m sharing this because I’m a 52 year old woman who couldn’t just be happy that she didn’t have the genetics for cancer – I had to pull my poor body image and sense of failure at being whatever weight and size culture says I should be into my thinking.

Speaking of thinking, I DO actually give thanks for this ride I’m on, because it has given me time to think. I’m often thinking about how each day truly is a gift, and how I spend my days matters. Cancer is a great perspective shifter and clarifier. It also helps me think about whom I would like to be and what my dreams and priorities are. And yes, one priority is to treat my body better – all of my body – including my mind. So, that’s a project in progress.

After receiving the genetics news, we went ahead and scheduled my surgery for 29 June.

There was a little hiccup called the Seattle Heat Dome (100+ degree temps for days in a region where fewer than 50% of people have a/c) around the time my surgery was scheduled, so it was canceled, not 24 hours before it was due. The emergency room experienced a huge influx of visits from people suffering from heat related illness. Reader, I am not proud, but I did not handle this news well. For about two hours, I vacillated between having a tantrum and being distraught because my surgery was canceled and I wasn’t given a new date. Again, brain vs. heart. I knew that the heat dome sent many to the hospital with heat related illness, and that they absolutely deserved to be seen. I also knew that anyone with an emergent situation should go ahead of me. And yet, it takes so much mental energy to prepare for any kind of surgery that it was tough news to swallow. In the next day or two, I received a new date, 6 July, 2021. And that was fine. It ruined a planned visit we had with our family from CO for July 4th celebrating, but meh, COVID times had gotten us pretty used to disappointments, so…we were just grateful I had a new date.

Tomorrow, I’ll talk about surgery, and surgery prep. So much fun. And yet. I’m oddly glad they’re behind me.

Oncology, oncology, oncology!

Meeting the team…

No sooner than had I begun to wrap my mind around the words cancer and oncology, I was sent to three types of oncologists: radiation oncologist, medical oncologist, and surgical oncologist. This was my team.

I needed a team now.

On 4 June, the COVID-19 regulations had relaxed such that no one gave me side-eye when Beloved accompanied me to each consultation. I had a 1/2 day of appointments, with approximately an hour with each practitioner. And each practitioner wanted to examine my breasts. Why? Did they not read the report? Surely, there was no need to look and palpate. Nope. Apparently, they all needed to see what they were working with.

Reader, my doctors were all men. Aside: I have always chosen women doctors-even when I had my babies. So, guess who had to get over herself quite quickly when she realized every last one of them would want a gander?

Now, I KNOW that we are all comfortable with different things. Many people would be absolutely fine with having male doctors. And, I really was, too, as long as they didn’t have to, you know, look at my boobs! Listen, I know that they are professionals. I know that to them, parts is parts. But these are my parts. And having these perfectly professional MEN doctors was one of those experiences which reminded me that we lose a little bit of agency when we’re sick or injured. We go where we need to go, and do what we need to do.

I ended up really liking my team. They were all kind, gentle, and answered all of my many questions as if I were the first they’d ever heard ask them.

I was surprised and a bit embarrassed that I started crying when I was with the radiology oncologist. He told me I would have a great outcome, but that I would likely need radiation. I guess I thought we were still at the “here are your options” phase, when really we were at the (his words, “Spoiler alert: you’re going to need radiation.”). I think I was just still mystified that a teeny tiny tumor could up-end my life so much. It hadn’t spread. It was “best case scenario” (other than not having cancer), and yet, here I was talking to someone about radiation.

My meeting with the medical oncologist reviewed the fact that my tumor was positive for estrogen and progesterone. What this means is that this type of tumor feeds from those hormones, and the key for preventing further growth or recurrence is taking a medication to block those hormone receptors. Tamoxifen. Tamoxifen has been shown to decrease a person’s likelihood of recurrence significantly – up to half. And yet, side effects can be as “mild” as mood swings, hot flashes, and night sweats, and as dire as blood clots and uterine cancer. Well, that took a turn quickly. The plan was for me to begin Tamoxifen after my radiation, which was to be scheduled three-four weeks after my surgery.

Speaking of which, the surgeon’s appointment was pretty simple. According to this doctor, a lumpectomy was going to be sufficient–with equal outcome to having a single mastectomy, and my insurance might not even cover a mastectomy – because it wasn’t medically indicated. So, lumpectomy it was. When I asked how much tissue he would need to remove (again, for this teeny tiny tumor), he said, oh, just about two ping pong balls’ worth.

Okay, then. Two ping-pong balls’ worth.

So that was the plan…unless the genetic testing revealed that I had the genes for breast cancer. Then I would plan for a double mastectomy. (pivot!) For about three weeks, while I waited for my test results, I vacillated between wanting one option or the other (not that it was in my hands) until I heard back from the genetic oncology nurse practitioner.

And that’s where we’ll pick up for next time.

Part 2 – So This is Cancer

Diagnosis and Sharing

After telling the kids, there was “the big appointment” where I was supposed to find out my results.

Aside: The security folks at the hospital nearly did not let my husband of 31 years come in with me to my appointment. You know the one – where you’re supposed to bring someone because in your shock, you won’t remember all the details? If I had been having a baby, he would have been welcome; but because I was only hearing life changing news, he wasn’t allowed to join me. Just another service COVID-19 provides. Reader, I fought this. Sometimes being your own advocate means questioning a dumb rule, and asking if your husband, who is fully vaccinated and willing to wear a hazmat suit can join you. “I’m finding out about my cancer today. Can he please come in?” They finally relented and let him join me. I’m so glad, because you know what? Caregivers matter, too. He was facing this just as much as I was. Another aside: The healthcare staff in my appointment was all very kind and welcoming. They don’t like the COVID-19 precautions any more than I do. And they are exhausted. I give them all so much credit for showing up to work.

The nurse practitioner was an older millennial, so she knew that I had access to my results. So she quite appropriately greeted me, and then said, “What do you know?”

I said, “Well, can I just blurt out everything I think I know, and have you tell me whether I’m right?”

“Absolutely.”

So I did. And it turns out, I was pretty on target. I had a very small tumor, which had been caught early. It was housed in the milk duct, with no spread, and it could only have been found on my mammogram. Basically, it was a detected due to a group of calcifications growing in a cluster. Calcifications on their own are benign. When they grow in certain patterns, they signify possible malignancy. To be clear: I never would have found this as a lump, as it was the size of a small pea in the midst of a fatty, lumpy breast. So, my cancer stage was zero. Typically cancer is staged 1-4. So having a zero stage cancer was good news. That meant that there was a small tumor with no spread. Soapbox moment: Some people have the audacity to call this pre-cancer or not cancer at all because the nature of cancer is that it spreads. I call bullshit on that. If even one cell would have burst through my milk duct, I would have had stage 1 cancer, or “real” cancer. Let me tell you, my treatment program was for cancer. Moving on…the stage was 0, the grade was 3. That means I was correct; it was a quick grower (grades are given 1-3). And, my tumor was highly positive for estrogen and progesterone. So, my low dose birth control pills, used for a little relief from hot flashes and night sweats did not CAUSE the cancer–but they fed the cancer. Bummer. Had to stop those.

By the end of that appointment, I had several more on my calendar: consults with the radiology oncologist, surgical oncologist, and medical oncologist. And shortly thereafter, with the genetic counselor for oncology. I was so grateful to have a team which would work together to treat this, but I also grew a new label and became a new statistic in a pink sisterhood. Breast cancer patient. Oncology would be a new vocabulary word which I would see often, as well as cancer. I went to a cancer partnership for treatment. I saw oncologists. Shit was real. Cancer, cancer, cancer. For someone who had “the best case scenario”, my life sure was about to change a lot. Lumpectomy, mastectomy, hormone positive, Tamoxifen, perimenopause, post-menopause, side effects, and radiation were also new vocabulary words.

After my big appointment, it was time to make phone calls. I am pretty transparent on social media, but I didn’t want my closest friends and family members to find out that way. I did post on social media after a point, because I was so tired of making calls and telling the same story. In many cases, I felt like I had to be brave and comforting when I told people. It’s hard for folks to hear bad new about people they love. I get this. But it’s exhausting to the person sharing the news. At least it was for me.

Tomorrow, I’ll share about my appointments. Woohoo!

So this is cancer…

(and what have you done?)

It’s about to get a really pink all up in here everywhere, because October is breast cancer awareness month. I love the color pink, so I guess I’m not bothered by people using my favorite color for a good cause. If there’s anything I want people to know, it’s that they must be their own healthcare advocates and check their boobs, balls and skin, and make appointments for those mammograms, skin checks, and colonoscopies. Early detection saves lives. It really does.

Another reason I’m writing is because when we think of cancer, of any kind, we might immediately think of quick or eventual death from the disease.

And that happens sometimes.

But I’m here to share my experience, for what it’s worth, because I also had cancer, but unless I told you, you probably wouldn’t know it.

On 21 May, I was getting ready for a long weekend away with my beloved. We were packing and almost ready to leave for our beautiful mini-vaca in our “backyard” of Washington’s Olympic Penninsula. Then I saw a notification on the medical app on my phone. Apparently, my test results were in from a biopsy I’d had 5 days before. Reader, the right thing to do was wait until my appointment on Monday to discuss these results with my nurse practitioner. Reader, I did not do the right thing. Also, I was semi-preparing for bad news, because when I had undergone a biopsy years ago, they called me right away to tell me it was benign. The woman on the phone said something like: “We didn’t want you to worry all weekend unless there was something to worry about. Your appointment for Monday is canceled.” That’s a fine way to be notified, until you have a subsequent biopsy and the phone doesn’t ring.

So I read: Ductal Carcinoma In Situ.

Guess which of those four words I focused on?

I may not know much, but I know what carcinoma means.

Cancer.

Now, gratefully, I have somewhat of a medical background, as I used to be a medically focused speech language pathologist. I knew “ductal” meant milk duct. I knew “carcinoma” meant cancer, and I figured “in situ” was probably better than not, because it means “in place.” I saw that my tumor was hormone positive and a nuclear grade 3. Shit, I thought. It’s in place, but I bet grade 3 means it’s a fast grower. Still, I was numb and speechless when my husband walked in to see how my packing was going.

“What?! What’s the matter?”

“It’s cancer.”

“You got your results?”

“Yeah, cancer.”

(takes my phone to look and reads on, with tears threatening, but not falling) “Do you want to cancel? We can totally cancel.”

“Yeah I do. I’d like to curl up in bed for a while. But…I think we should go. If there’s one thing I know, it’s that nature is healing.” As a Christian, I have always felt closest to God when I am outside. It’s like a layer of distance, if you will, is removed. I know this isn’t truly the case, because God is wherever God wants to be, and time and place are no barrier for Him. But for me, outside = thinner, closer to my Great Comforter. And I needed some comfort.

So we went, knowing that cancer would be on our minds the whole time, regardless of the immense beauty we would experience. And boy, it was spectacular. There is something so perspective changing and to walk among trees which are hundreds of years old, and beside a surf which pounds rhythmically and relentlessly along the shore. “This is so amazing. I’m so glad we did this. Sigh…How will we tell the kids?”

I’m here to tell you, of all I’ve been through, gearing myself up to tell my kids was the hardest thing of all.

Reader, it’s not right to look up Doctor Google when you get a diagnosis. I know this–no one should not go doom scrolling for medical information. But I knew at least two websites would give me decent information to tide me over till my appointment, so I went only to them: The American Cancer Society, and The Mayo Clinic. I took a peek at those, because I needed to wrap myself around my diagnosis just enough to figure out what to tell my kids. And, for the record, I was optimistic, yet still obviously in shock after I read them. I could have waited till the appointment on Monday (no, I could not have), and gotten the scoop entirely, but my daughter and son were both home at the same time (which is rare with adult kids), so after we got back, my husband and I took the plunge and told them. 10 out of 10 do not recommend telling your kids you have cancer. It sucks as much as you think it will. But it’s so important to be clear with your family. And I’m so glad we could tell them in person.

End part one. Since this is a bit of a tale, I’m parsing it out over a few posts. Don’t want anyone to fall asleep in their coffee. I think I will publish one a day until this tale is told.



Pssssst. We’re Over Here (Shhh)

Today’s musing may only be relatable to my Christian readers, but everyone is so welcome to weigh in! My hope for this blog is that it would ignite a conversation between us,  rather than be just a one-way dumping ground. I like to mull over things in my mind; and it’s nice when others share their thoughts, because I then gain another perspective, which helps me learn and grow.

Today’s topic is about what I’m going to label as Christian cloistering. I’ll tell you how it came to mind: One day, while I was at work, a woman told me she was so ready to leave the Seattle area and move the heck outta this state. I think I commiserated with her re: the endless rain. I mean…it really is endless between January and March. Most of us have asked our doctors about installing gills, and we eat Vitamin D like it’s candy. At least I do.

Anyway…she said something like, “Yeah…plus, my taxes are going up, and I just hate the values here–everyone is so l.i.b.e.r.a.l.!  OMG, a fate worse than death! Let me tell you something – to all my Jesus following friends, I am pretty darn liberal, and to all my non-Jesus following friends, I’m pretty darn conservative. These labels…oy. Can you envision my eyes rolling with the love of Jesus? I didn’t roll them in front of her. Because I used my faulty-but-better-than-nothing filter. At any rate, I gathered enough intel to understand that she is a Christian, trying to raise her family in what is, quite honestly a very spiritually dark area of the country. The Northwest is not an area where one typically hears a lot about Jesus. It just isn’t. In fact, we hear a lot NOT about Jesus. When I drive my son to one of the most renown universities in the state, I see store which clearly sells and celebrates items from the occult. I have rebuked Satan often as I drive by–rebuked his influence from these young, curious, incredible minds, who were made in the image of God, Himself. So, I can see how it would be much easier and more fulfilling to move to a spot where more people shared the same religious and moral beliefs. It’s tough to be a fish out of water, so to speak. But when we believers choose to cloister ourselves from others, how does that help them? Shouldn’t we be more ignited to share about Jesus in these dark corners, rather than giving into our comfort, convenience, and fear by moving away from them? Jesus told us to love Him more than anything else, and love our neighbors as ourselves. He also shared many parables about how important lost people are to Him. Hit me up if you want to read any, and I’ll link you to some. Lastly, his final instructions to us included saying that we needed to go out and share His love to the ends of the earth, noting that He would never leave us, and would even send a Helper (Holy Spirit) to indwell us! We have no reason to ever feel alone, because if we accept His gifts, we know we aren’t alone. Again, this is easier said than done, I grant you. Why? Because when we live in an area that doesn’t reflect our personal values, we can love Jesus all we want, but, being human, the lack of community hurts. So, when we find people who ARE OUR PEOPLE, we cling to them. Or at least I do. And, yeah, it’s very important (and Biblical) to seek out the community of like-minded believers. But it’s equally important to reach out, after we’ve been “filled up” with that like-minded love.

Look, as Paul says, “I am the worse of these (sinners)”, and I really am when it comes to what I’ll call mini-cloistering. I’m not moving off the grid into a compound, but I can honestly say that it’s muuuuch easier for me and usually more fun for me to be with my similarly believing friends, whether in regards to politics, religion, or preference for Taco Bell. Anyone feel me? And there is time for that. But God isn’t about my comfort as much as He IS about His glory and loving the lost ones–our neighbors, both near and far. In my opinion, Christian cloistering, whether mini or not (sin is sin, no?) is a real show of a lack of faith. Yes, we must guard our hearts and be in and not OF the world. But if we’re so busy trying to protect ourselves that we fail to live and LOVE EXTRAVAGANTLY and SACRIFICIALLY among people who don’t think the way we do, to me, that’s a lack of trust in Jesus and the Holy Spirit in us. Christians will be persecuted, whether by sneers and jeers, or even by violence–and that sucks. Most of the disciples were martyred for their faith. Certainly Jesus was martyred for His. We must trust that God is with us, even to a bitter end, because we also trust the eternal picture of life after this blip on earth. I’m exhorting us all to live out our trust by loving those who aren’t like us. We are free to love as Jesus loved, because he loved us, first.

What are your thoughts on so-called Christian cloistering? Do you see it where you live? Is it hard for you to love and hang out with people who don’t know Jesus?

Much love to you.

 10 The thief’s purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life.

11 “I am the good shepherd. The good shepherd sacrifices his life for the sheep. 12 A hired hand will run when he sees a wolf coming. He will abandon the sheep because they don’t belong to him and he isn’t their shepherd. And so the wolf attacks them and scatters the flock. 13 The hired hand runs away because he’s working only for the money and doesn’t really care about the sheep.

14 “I am the good shepherd; I know my own sheep, and they know me,15 just as my Father knows me and I know the Father. So I sacrifice my life for the sheep. 16 I have other sheep, too, that are not in this sheepfold. I must bring them also. They will listen to my voice, and there will be one flock with one shepherd.

17 “The Father loves me because I sacrifice my life so I may take it back again. 18 No one can take my life from me. I sacrifice it voluntarily. For I have the authority to lay it down when I want to and also to take it up again. For this is what my Father has commanded.” John 10:10-17 (NLT)

this is my first blog post – and it’s a bit of a PSA. i have no idea why.

Well hello there! Welcome to Musings with Gretch. I introduce myself more fully in the “howdy” post, but basically, the tagline on my blog says it all: I have too many words, and need somewhere to put them, because my poor, long-suffering husband? His ears must be exhausted. 🙂 I also like to share–mostly to encourage; sometimes simply to laugh. I’ve had this blog for 8 months, and this is my first post. Why? Oh, tons of silly little reasons. But I’m here now. This post is a bit of a unicorn for me, as I’m actually sharing reflections not only to encourage, but also to inform.

For the last eight months, I’ve been serving a preschool population of children within a local school district. I also serve a handful of elementary kiddos, but over 2/3 of my job is spent with the nearly three-to-5 year old population. I’m a speech-language pathologist (or speech AND language pathologist, if you prefer – or “she’s my speech teacher” also does in a pinch) so my jam, at least in the educational setting, is anything to do with speaking, listening, and expressing thought through language. Although I have a few preschoolers on my caseload for therapy, my main job is to evaluate them for possible communication delays. I prefer to use the word delay rather than disorder, because the word delay implies “not yet”, while disorder suggests more permanency. I like to promote hope and sit in the “not yet” for as long as I can.

I want to be an encourager, and as someone who has walked the road of special needs within my own family, I know God has prepared me for such. Aside: I am a Jesus freak, so I mention God all the time. If this annoys you, I’m not sorry. But I hope you’ll stay with me, even if you’re not a Jesus follower, because I promise I don’t bite. God is just so much of who I am that to NOT mention Him on my blog would be disingenuous.  Anyhoo…I want to encourage others, so actually working with the parents of this population of children is more my mission, than working with the children themselves. MOST of the parents, regardless of their level of education, race, or socio-economic status, have been wonderful and advocate well for their child/ren. I am so pleased to see this. I am even pleased to work with the annoying  demanding  extremely concerned and vocal parents even though they exhaust the crap outta me because I know they are working to give a voice to someone who may not have one. I was one of those parents. I am one.

Be annoying.

I mean, don’t be annoying unless you must; but your child is worth a secret eye-roll and deep cleansing breath of his/her practitioner at your expense. I think most of us went into our professions to help others. But knowing there is a difference between what we want to provide, and what we are ABLE to provide, can be a bit of a grind on our psyches. Most therapists, teachers, medical staff  (especially in the public schools) are serving you in a system that is over-taxed and underfunded. Things take much longer to turn around (e.g. reports and getting kids into therapy) because there is always someone else waiting in line who needs help. But we can only change care for the better if we all speak up. If your child needs something, please speak up! You know your child best of all. YOU are the most important part of his/her healthcare/educational team. YOU. S/he is at the center of activity, but parents are the project managers of their child/ren’s lives.

The primary reason I bring this up, is that I have been tempted to judge a few parents for NOT advocating, and my heart was convicted. Perhaps they are rotten people, who don’t love their children, but I think it’s more likely that they love fiercely, but don’t know what to ask for on behalf of their child/ren. Back in the 1900s, when I attended gradual school, a wise professor said: “I have never met a parent who said, ‘This is BEST and this is second best. I believe I’ll take second best, please.'” As a clinician, that perspective has never left me. Oh, sure, it needs to be dusted off and brought to the forefront of my mind every now and then, but it’s true. Most of us truly want the very best for our children.

With that in mind, I want to help you advocate for your child/ren by sharing some tips regarding normal speech and language development. This is not an exhaustive list, but a place to start. If you have concerns, speak to your pediatrician or call your school district, or do both.

  • Generally speaking, kids begin to speak at about one year old. First words may include: “mama”, “dada”, “dog”, “milk”, “juice”, “ball”, etc.
  • Kids are putting words together at about 2 years old (e.g. “mama juice”, “go outside”), and speaking in phrases and small sentences by 3 years of age.
  • Kids all simplify speech by using what’s called phonological processes. These are things like saying, “ba-ba” for bottle, “pagetti” for spagetti, etc. This is developmentally normal, as speech sounds are acquired in a specific-ish order and it’s quite a load on the brain and body to learn how to say each sound. However, if they simplify their words such that you can’t understand them at all by the time they are preschool age, they may be demonstrating a delay.
  • By preschool age, most children should be mostly understandable to their parents and other familiar listeners. And they should have no problem understanding you – e.g. able to follow directions, engage in a discussion, tell a story, etc. If you’re the only one who understands your preschooler, I think it’s worth exploring with your doctor or school district.
  • Your child does not need speech therapy if s/he is understandable, but can’t produce R’s at age 2 or 3. R is a later developing sound. This link is super helpful in determining the acquisition of sounds.
  • By kindergarten, your child should be producing mostly adult-like speech. Consonant blends and later developing sounds might show some errors, but in general, they should be easy to understand.
  • This link is from the American Speech Language and Hearing Association, and gives great guidelines not only for development, but for what you can do to facilitate growth and development in a child’s communication.
  • Ear infections matter. A child with a history of re-occurring ear infections likely has had a swiss cheese-like exposure to speech and language. They will show strengths and holes in development. When the ear is full of fluid or gunk, that creates a mild hearing loss for the period of time the child has that fluid/gunk in the ear. Let’s say a child is sick for even just a week – think of how much language we hear in a week’s time. If you multiply that by the number of ear infections which last a week, this is a significant loss of exposure to language. If your child is susceptible to ear infections, keep an ear/eye on his/her speech/language development, and remain in communication with your pediatrician. It’s very common to see delays with these kiddos.
  • Please, for the love, READ out loud to your child/ren. Often. This is far superior than putting him/her in front of a TV show or app (even better than Mr. Rogers, but he’s pretty darn amazing). But it takes time and energy to read. I get it. If you happen to have older siblings, have them read to their younger ones. I cannot underscore this enough.
  • Please, for the love, READ out loud to your child/ren. 🙂

Parents, you are doing such hard, holy work in raising humans. It seems endless, but it is so worth it. Long days, short years. May God bless and protect you and your babes. Please comment below if you have any questions. I’ll do my best to answer or find the answer. Much love to you.