NET the World On Fire @nettheworldonfire - Tumblr Blog

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Home today and attempting to work. Feeling okay - just groggy and tired - kind of like flu symptoms. My incision seems to be fine and relatively pain-free (at least when I don’t bump it). I’m so dehydrated and thirsty - drinking cups and cups of water only to be dying of thirst again 10 minutes later. Not sure what that’s about. So, I was up and at it from about 7-9 am, had a healthy breakfast, and handled some emails and grading.

But then I literally couldn’t keep my eyes open. My head felt like it weighed 200 lbs, and I caved in. After a 1.5 hour nap, I woke up feeling a lot better. (Obviously a big shout out to my furry nurses).

Got things set up to do some work again but interrupted by a call from the obgyn, so I figured I’ll write up the details of yesterday’s procedure and then follow up about the gynecological stuff soon. Sorry again that you’ll be time hopping with me through these next few informational posts, but I’m a bit of a disaster these days…

I have known about the radiation options for quite some time (I think my first convos about them all happened nearly five years ago, but I had at least two appointments with the liver directed specialty teams in the last two years as well) but since the lanreotide injections have been holding my tumors at bay. No one thought it was time to go this route yet. Fast forward a few scans and maybe 6-9 months…

I think I’ve explained in a previous post or two, but they thought that the time had now come to be a little more aggressive with my treatment. That meant starting oral chemo and evaluating if that was enough or moving onto liver directed treatments.

The CT scan from my time on just the chemotherapy showed that there was minimal growth and that it may have been working, however, not working enough to minimize the size of the tumors or stop their growth so they decided that the liver directed therapy was the next step forward. Being that they told me the recovery time for these procedures was fairly short, and that the biggest side effect is exhaustion, which I feel always, I felt comfortable moving on to this portion of the treatment plan. There were some concerns about having had chemo in the past and also having the Whipple procedure done, the chemo being something that is hard on the body and many of my organs and the Whipple procedure aftermath creating complications with the radiation through catheterization - sometimes leading to life-threatening infections. There is protocol in place to prevent infections that they said typically works in 70% of cases and hopefully will work in mine. If for some reason I do get an infection it would probably mean a hospital stay so that I can be on IV antibiotics and recovery time being more like 2-3 weeks than 2-3 days. Additionally, I think it would push back my time line for the second treatment.

So two weeks ago (March 25) I had a mapping procedure done at Penn that allowed Dr. Soulen and his team to determine if the radioactive beads would go to the right locations when I had the real procedure. They shot in some blanks and I had a CT after to locate where they went. They determined it was a successful mapping and my appointments for April 8 and May 6 were solidified. They said the recovery for the mapping would be less than the actual radiation, which makes sense, however, I had a lot of pain at the incision site and it made it difficult to walk or stand for long periods of time. It was pretty gnarly looking, and when I first got up from the bed in the hospital, there was a lot of blood which they told me was normal.

I felt weak and had consistent pain for almost a week, but no complications. Owen was with me that day (and yesterday too) and my mom helped with the kids and I actually rested. Lucky to have my family and friends in this time for sure!

There are two appointments/procedures are required because they do one lobe of the liver at a time and wait 4 weeks in between for the body to recover. I had to change my chemo schedule a bit to align perfectly with these procedures so it made my Sunday-Saturday pill case a bit less helpful as things change week to week, but I am figuring it out.

The procedure (called Y-90) involves going in through a small nick in my groin/thigh area, think of the spot where brief underwear leg hole starts. They put a catheter in which allows Dr. Soulen to maneuver some sort of robotic technologically genius device to shoot small radioactive beads through my artery and into my liver with the goal of it targeting the tumors directly and not impacting any other parts of my body that don’t need the radiation. (I like to think of this like an “Innerspace” or “Tron” type process where hw uses a joystick….but I’ll also try to get some actual pics or whatever for the sake of science). This Y-90 procedure, when done in tandem with the chemotherapy, I am receiving, allows for a level of synergy between the chemo and radiation, which can sometimes shrink the tumors or at least stop their growth for as long as several years. This process is pretty new and only done in a few hospitals at this time. In fact, it’s all part of a research study right now in hopes to help more people, and Penn is one of the leading hospitals for this research. There are only a few case studies, I think less than 100 that have had this treatment now twice. On average patients are able to go back to just the lanreotide injections because their tumors are shrunk or stable for about three years. This procedure can happen again in that time and therefore having it twice could extend my prognosis for up to six years. And maybe even beyond then if I am some sort of anomaly. Additionally that buys us time for other research to take place and new treatments to be available. And time is my goal people.

I need to take a break to get some work done, so I’ll update again soon. 🩷

May cause dizziness…your cancer cannot be treated with surgery…take exactly as directed…prior authorization needed…inject 10 units daily…minimally invasive…take two capsules by mouth three times a day with meals…you are agreeing to take part in this research study…X-ray images and contrast dye…

If you have any questions…

I have all the questions. So many I can’t seem to think clearly enough to ever ask at the right time, and so many that I send portal messages to three or four different doctors multiple times a week. No one ever told me that managing chronic illness would be simple, but my ADHD and anxiety ridden brain simply can’t keep up with all of these appointments and directions, while being a teacher, mother, wife, daughter, pet parent, friend….(and of course making time for self care and personal growth.) However, I try.

Today I had my first radiology treatment - formally known as NM Therapy SIR-spheres and XA Visceral Arteriogram - also referred to as Y-90, directed liver radiation therapy. The procedure seemingly went well (fingers crossed) and aside from being exhausted and quite loopy for a while when I got home, I am doing okay. Not experiencing as much pain as the planning/mapping procedure caused me two weeks ago, but they did say that sometimes the pain comes on a day later, and I was given narcotics this time — which is a little worrisome. Fingers crossed my body is accustomed to femoral artery incisions and it’s another “no biggie” in my gamut of medical pastimes.

I don’t have the time or energy to provide a full update right now. but I promise to Tarantino this story and give you the deets on the last few months and plans for the next couple. Hopefully 🤞🏼 I’ll be able to handle that tomorrow in between the IEP writing, grading, and progress reporting!

The second month of my new treatment crept up on me!

Last week I got a call from the oncology Pharmacist at Penn and Optum home delivery because there was an issue with my order. Had I realized I needed the new meds by Saturday in order to start them Sunday, I might have called them sooner, but I had lost track of time over break I suppose! Even with my pill case being on the last few days of week 4.

I must have gotten a dozen phone calls during the school day Friday, which was tough. Literally every five or ten minutes another person called. There must be some kind of system at Penn where your name goes from one, to the next, and so forth because it was so efficient and didn’t overlap.

They hadn’t scheduled my bloodwork (or my telehealth oncology check in) and wanted me to go to a Penn lab (which is at least 45 minutes from my house and only Monday-Friday during work hours). They said I could go to Labcorp but it was risky that I wouldn’t get the results back before my Tuesday 1/7/25 appointment with Dr. Fredo (doctor who works alongside of Teitelbaum).

But with work and picking up the kids, I just couldn’t make Friday work, and I thought waiting until Monday was even more risky because of the storm. So I went to Labcorp early on Saturday as a walk in, was one of only three patients and was in and out in just a few minutes. Lucky, too, because when I was leaving there were about 20 people sitting in the waiting room. Results were ready by later that afternoon and in Penn’s system this morning, so all is well.

Generally my numbers look okayish. Only a few were high or low (out of range). So I’m interested in hearing what Dr. Fredo says tomorrow and hope it means I can keep going with the treatment. Then in two months I should be getting a scan to see if it worked or had any effect on the tumors. Hoping to get that on the schedule sooner than later.

While I don’t feel anywhere near as bad as last month when I had the stomach bug on top of the new meds, I definitely feel off. 🤢 Not sure if it’s just that there is way too much going into my body at this point (and my GI system is pretty much always a mess), or maybe it’s anxiety, or maybe it actually the meds that are making me feel off, nearly impossible to tell at this point.

Currently, I’m at my wellness exam with my primary. I had to reschedule my appointment from the fall when we were under the weather, and my doc was a little annoyed I think. Since he handles a few of my meds he wants me to come in every few months, so I have to keep on their schedule since it’s impossible to gey an appointment less than two months out when you call.

I’ve already been scolded for not having a recent Pap smear and I’m sure they won’t be happy that my diabetic eye exam is late too, but I guess getting in trouble with doctors is not so scary for me anymore. When you have five or six appts a month, with different practioners and hospital groups who all have different things to chide you about, you get used to screwing things up.

Hoping to update again after my appointment tomorrow afternoon. Fingers crossed that these meds are good to keep taking and kicking these tumor’s booties. 🤪

Day 10 update

Today marks the tenth day of taking capecitabine, and tonight will be my first time taking the temozolomide.

I started my 14 days on Sunday, December 8th, and I was pretty sure I was having a terrible reaction to the meds, nausea, headaches, dizziness, exhaustion, vomiting, body aches, etc. I honestly felt so depressed about it all, worried I’d feel this way pretty much all the time for the next year or so. Luckily (?) our whole family had a horrible stomach virus, and by Thursday I started feeling more like I normally do.

I still have stomach issues most days, headaches some days, and general fatigue, well, always…but I’m hopeful the really awful symptoms were from the bug, not my new treatment!

So I may end up back here, complaining about the way I feel after I start the more challenging part of the captem duo tonight, but wishful thinking my body will tolerate it and allow the drugs to do their job! Saturday will be the final day of this round of medication, so I have a few days to recover before Christmas and hopefully two good weeks ahead.

Life is Like a Box of...Pills. It's a pillbox.

It’s been quite awhile since my last update. It’s hard to keep up with this because I never quite feel like I have processed things enough to write about it clearly. And then after a little while, it becomes the new norm for me, and I don’t feel like it’s update worthy.

The last two weeks have been busy. In addition to our HVAC breaking and spending a few days freezing our booties off, I’ve had lots of appointments. Generally speaking, it was time for my scans…but due to a horrible week-long headache that wouldn’t go away, even with all the meds, Dr. Teitelbaum suggested that I get an MRI of my head/brain. Well, at first it was a suggestion, then a “let’s move all your scans up a week and add this one.” And then, I was getting a phone call at 11 a.m. on a Wednesday asking if I could come into the city for an MRI at Penn by noon that day. So things seemed a little more… concerning. Since I wasn’t able to just leave work midday and get into the city in that timeframe anyway, the MRI was scheduled for the following Friday evening at Chester County hospital, giving me a fun-filled Friday night.

Here is what my calendar looked like:

11/22/24 - MRI of head/brain

11/25/24 - A1C blood work (for endocrinologist)

11/26/24 - CT scan chest/abdomen

11/26/24 - Endocrinology appt. With new endocrinologist

11/27/24 - Lab Work for Dr. T.

11/27/24 - Oncology Appointment w/ Dr. Teitelbaum

11/27/24 - Lanreotide injection

12/2/24 - Dentist appointment (random, but still necessary)

12/4/24 - Pharmacist phone appt. To review meds and delivery/pick up options

12/4/24 - Educator appt. To explain plan and side effects of new meds

12/6/24 - New meds delivered (check out this awesome eco-friendly ice pack!)

It’s been pretty consuming.

In order to make sense of the last two weeks, I probably need to back track a bit. Over the last year or so, Dr. Teitlebaum has been questioning when is the “right time” to move onto next steps in my treatment. Unfortunately, there is no way of knowing how fast my tumors will grow, how long it will take for them to start having a negative impact on my liver function (or even metastasize elsewhere), or how my body will respond to different medications or treatment options.

And boy did I have anxiety about it. The waiting, the unknown, the what ifs…they are all really hard for me. I have the normal “scanxiety” before all of my CT scans, MRIs and Gallium PT scans. I have the anxiety caused by fear of the unknown; how much time do I have left? How will my death impact my children and their development? How will the loss of my salary impact Owen and my family’s lifestyle? And my least favorite - How much am I going to miss out on? But, at the last few appointments, the anxiety has been different, because even with the good news of, “no substantial growth” there still is minimal growth. And minimal growth plus minimal growth plus minimal growth eventually equals substantial growth, right? My team has been meeting more frequently, my name is on the docket for the “tumor board” meetings every few months, and the question of when is the “right time” continues to come up. While I completely trust in my team, and I know they wouldn’t intentionally steer me wrong, there isn’t a clear correct choice.

So then the medical professionals, who are trying hard to evaluate all options and do the right thing, turn to me, the patient and say – what do YOU want to do?

I have been carrying this weight on my shoulders for some time. I have this horrible fear of playing God and making the wrong choice. And then feeling guilty. Am I avoiding making a decision because of the side effects and the inconvenience of it all? Part of me hates the idea of moving forward because we can only do that so many times and admitting we need to start the next thing means that I am moving closer to the end of this parth. The other part of me is terrified that I wait too long to go on to the next step - and one day my family looks back and thinks, “why didn’t she do this a month sooner?” – which riddles me with (pre)guilt. And a small bit of me thinks, maybe if we just ignore it all I can avoid making any decisions…right? Up until recently, the way my appointments would end was generally the same. There is growth, but not a ton of growth. We could keep doing what we are doing, or we could start a liver directed therapy. And since neither the doctors, or I, had a significant opinion one way or the other, we just decided to stick with the current treatment and reassess in three months. Every time. It meant an endless cycle of “wait and see.”

But this time was different. Dr. Teitelbaum wanted to see me in person. Owen came along for the first time in a few years, and while the doctor said this was the best 30 minutes of her day, it was a little more stressful for us. We are starting the next phase, which is chemotherapy. The drug combination, known as captem, is a combination of Capecitabine and Temozolomide. It’s 14 days of Capecitabine (twice a day), combined with 5 days of Temozolomide (once a day) on days 10-14, and then 14 days off from both, to allow my body to recover and my immune system to rebuild. This will happen for three months in tandem with the lanreotide, as long as my body can tolerate it, and then there will be another CT scan. Dr. Teitelbaum will meet with me monthly, and I’ll have bloodwork done each month too. If after three months, the tumors have necrosis or have shrunk, they will pair this treatment with liver directed therapy. Dr. T. says that if the captem is effective, it typically has a synergy with the LDT and can really have a positive impact. Dr. Soulen and his team would perform the Radioembolization, which involves injecting microscopic radioactive seeds into the bloodstream to the liver. In order to undergo this treatment, they will do a test run (to make sure the little seeds don’t head to my lungs). If that works, then there will be two more treatments (one for each lobe of the liver). I am hopeful these will be relatively easy on my body and that they will buy me some more time.

Side effects are likely to include fatigue, nausea, hair-thinning, dry skin and dry mouth, diarrhea, constipation, and general crappiness. Nothing I haven’t dealt with before - just really not looking forward to feeling worse than I already do as an almost 42 year old mom of young kids who works full time and loves naps.

I am pretty sure the chemo meds are something I could be on for up to a year. The radioembolization could also happen again, not right away, but down the road if needed. Best case scenario, both of these aren’t needed again for a few years and I can go back to just the lanreotide in between (which I’ll stay on for the foreseeable forever, at this point).

After my appointment that day, I still had my lanreotide injection that night. Believe it or not, I think it was my 62nd injection!

My new medicine regime is a tricky one. We had to order one of those 28 day pill boxes. I have pills to take in the morning, pills to take after breakfast, pills to take before certain pills, pills after dinner, and pills at bedtime. I have a variety pack of anti nausea medicine, as well as something for anxiety at bedtime. Those are at least as-needed, so they don’t need to be in the box of doom. Which is good, because right now, on days 10-14, I am taking 17 pills a day.

In other (related) news, I still have Type 2 diabetes from the Lanreotide (taking Metformin for that) and Type 1 diabetes from the Whipple (taking insulin for that) and back to wearing a glucose monitor all the time. My A1C hasn’t been consistently under 7, so I need to do better.

All of this is going to be a huge learning curve for me since I am terrible at remembering to take pills, but I have an angry nurse (Owen), who says he can keep me in line. I’m not looking forward to a whole new level of “which medicine or ailment is causing me this issue,” but I’m pretty grateful that I am still here and have the miracle of modern medicine on my side.

#nettheworldonfire #cancer #survivor #medicaljourney

Headed in the right(ish) direction...

Today I had to get my tooth fixed. It's a tooth that had a cavity in 2020, was filled, and then the filling broke. Was redone, and for the last year has caused me pain whenever I bit onto something. I've been to the dentist 6 times in the past 8 months to resolve it. They adjusted the bite, then dug it out and redid it, then adjusted the bite three more times before getting me a consult with an endodontist. Then they found a small hairline fracture. Today they chiseled that bad boy down and put on a temporary crown. In two weeks, a real one. Please send me some good tooth juju that this is the fix. I think I've been to the dentist more in the last two years than the previous 10!

I told myself I was going to try to stop drinking coffee, but I was tired and decided to stop at Dunkin and request a sugarless iced coffee with coconut milk. Added in some of my own stevia and *I think* I'll stay out of the glucose monitor doghouse (it's quite jarring when the alarm goes off and I'm not expecting it!)

But I'll take it as a sign from the caffeine gods, because the car in front of me paid for my coffee, so I paid for the car behind me. And that felt nice.

It's been really easy to keep carbs under 50 grams a meal for now, lots of salads, veggies with yogurt dip, tuna, cheese, corn tortillas, eggs, avocado, nuts, and some fruit. Other than eating meat and eggs multiple times in a day, it's not too different than my normal diet (minus eating bread and sugared coffee).

New meds seem okay, however, my stomach is definitely feeling it. I've recently upped my Zoloft and added in a small dose of methylphenidate as per my psychiatrist, to tackle my immense brain fog and adhd issues. Plus, I had my Lanreotide injection this week, so my body is probably on high alert from all the new crap coming in. It will definitely be worth it if I feel better (and live longer) though, so I'm okay with the GI issues. Will write another post soon, lots of changes, but never enough time.

Okay, so I did that thing again where I fell off the face of the Earth for a bit. And in full disclosure, my memory is so bad these days, I don't know what you've "missed" while I was "gone," but I'll do my best to play catch up.

In September we got Covid (after successfully avoiding it forever) and had to reschedule our DisneyLand trip. Luckily, we were able to move flights and hotels and make it work). This meant though, in October, while floating through "It's a Small World" with my family, I got the call from Dr. Soulen -- the liver specialist. Through the spotty reception and tiny multicultural voices, I was able to hear his short, expert opinion - the Lanreotide injection has been doing its job, but probably won't by this time next year. The happiest place on Earth meets impending doom convo kind of left me a bit lost. And to be honest, I'm still not sure how I feel about it, because it means we're into the next phase - and while this is a "marathon not a sprint" it also will eventually end. Despite any weird feelings the call caused, and maybe because of it? I savored the trip with my family and I'm so glad we were able to make it work, even with the Covid curve ball.

Then, in November I had jury duty that was expected to last a week, and my upcoming Gallium scan got me dismissed. The scan showed very minimal growth (as expected) and Dr. Teitelbaum again discussed me at a conference for good measure. She keeps telling me she doesn't want to get "complacent," and I appreciate her being diligent. So, in December the docs decided to continue the Lanreotide injections, at least until my next scan in April.

Later in December, I had bloodwork (as always) and a physical with my primary where I had the pleasure of learning that the injections have given me type two diabetes. I've known this was a likely side effect (along with thyroid issues), but I was hopeful I was avoiding it. Like all issues with me, a metastatic anomaly, no one wants to just form a treatment plan without me seeing 500 specialists. I made an appointment with an endocrinologist at Doylestown Hospital (that was a month out) and then was given another appointment with Penn for the same week, so I canceled my first in effort to keep my doctors in the same circle. (Joke's on me because this circle is in West Philly and a 2 hour drive apparently). Took a day off, because Charlie also had an appointment at CHOP. My mom and Olive came along, so we could make it all work. Left the house before daylight, only to get pulled over for a left turn my GPS insisted I make. (Neither my mom or I saw any sort of sign saying I couldn't). I got a $165 ticket and was late to my appointment and couldn't get the whole "new patient" treatment so I had to schedule yet ANOTHER appointment. Fast forward to today -- took a two hour drive into the city -- I took a half day since my appointment was at nine, but I was still there with the docs at 12:20 so I had to call into work to take the whole day. Had I known I wasn't going to work, I probably would have dressed for comfort at least.

Now, I've finally had my specialist appointment with Dr. Sachum and a consult with Dr. Burns. They want me to eat a low carb, high protein diet (which I completely understand except my other gastro issues from the Whipple make me feel crappy when I eat veggies and meats, so that's fun). Currently I am wearing a Libre 2 meter (which is attached to my right arm for two weeks) to monitor my blood sugar. It gives me port vibes and I don't like it. The kids, however, are intrigued and Olive fell asleep caressing my arm (as usual) making sure she was touching the device. Weirdo.

I also have to test my sugars ocasionally using the finger prick meter (One Touch). That is not fun.

Everything is Bluetooth connected. How crazy is that? And what's super cool is that since they are linked to my phone, I get notifications and alarms sound to let me know it's high (or low, or just for fun maybe?) and they tell me that I cannot disable notifications, and it's all being reported to the diabetes police. (It's legitimately going off as I write this).

This should identify my patterns of highs and lows, and when the doctors see how things are working (or not working) we will formulate a plan. I've started Metformin (which they expect will cause me GI discomfort, but what's new) and they intend to slowly increase the dose over the next month or so. They may add another med if this doesn't do the trick alone. If cancer doesn't kill my liver, I'm pretty sure the 98 medications will.

So, I'm feeling annoyed and somewhat defeated by this all, which I'm sure is normal, but it's hard to keep up with life when I feel tired, nauseous, and generally down all the time. I'm working on the mental health stuff (new therapist) and hope to start feeling more like me again soon. I know there are people who have to deal with diabetes their whole life -- and I can certainly suck it up and deal with it as long as I have to. Hopefully, when the Lanreotide isn't working anymore and we move onto a new treatment, the effects of it will also go away and I won't need any of this crap. We shall see.

I plan to meet with Owen's aunt Monica, who is a nutritionist, and perhaps get some tips. Happy to accept any good recipes or ideas for school lunch (or coffee replacement options since I don't enjoy black coffee and can't justify wasting my carb intake on sugar).

Friday, I have my 36th injection - it's been about three years. It's insane. Let me say a hallelujah for that being an in-home visit. I couldn't handle going to Penn every month. My next scan is April, then a telehealth visit with Dr. Teitelbaum. May is the follow up with Dr. Sachum and then I hope any other appointments can be virtual because my PTO is being annihilated. Til next time!

The post that almost wasn’t...

I started writing this post in April. Yes, April. Five months ago.

Then I got sidetracked and tried to finish in May, but the end of the school year had me too crazy to actually finish it. Then it was summer and well, I couldn’t be bothered with opening a computer most days. Too much fun in the sun to be had. Now it’s the beginning of the school year and I’ve never been more stressed out and tired, but it’s Blood Cancer Awareness Month and I’m due for a post...

So, be patient with me as I retell this story(ies?)...and try to keep things reported in a timely fashion from here on out.

On Sunday, August 14th, I had my 30th Lanreotide injection and tomorrow I’ll have my 31st. It’s been two and a half years of this medicine, and it has been working to keep my tumor growth to a minimum. I am very thankful for that.

Back in mid-April, I had been experiencing significant pain under my right rib for about five days, and since that’s the general spot my liver is in, I was super stressed that it was my tumors acting up. After some convos with oncology, they asked me to come into the Perlman Center at UPenn to see the oncology urgent care team and get my scans done a bit early. (They were scheduled for May 3rd). So on April 26th, I made the hike into the big city. I forgot about how annoying it was to drive into West Philly (damn you, Schuylkill!) since I was re-diagnosed in February 2020 and only had one in-person appointment at Penn due to the pandemic. I hate figuring out parking and being lost in a hospital, then anxiously hanging in waiting rooms. I don’t mind meeting new nurses, techs, phlebotomists, and nurse practitioners who are always pretty incredible. But since the logistics of huge hospital systems gives me heart palpitations, I always ask the person who schedules me where I should park and how I’ll find my floor and the office I need — and the scheduler this time was also super helpful…until I got there and multiple roads were blocked with police and construction. I ended up parking a little ways away and taking a shuttle which wasn’t so bad - even if the driver was repeatedly screaming that she was gonna punch someone right in the face. I would have had anxiety leaving my car in a garage with my work computer and other such valuables, however because I haven’t cleaned out my car in forever — it definitely appears like I live in it — and certainly doesn’t look like it would be holding anything of value — so I think joke’s on you, robbers!

They took me back to get my CT scan pretty quickly but then I had to wait while they asked about doing a scan of my chest as well as the pelvis/abdomen, as my CT scheduled for the following month was for both and insurance likely doesn’t want me getting two CT scans within one week. Once they got that approval, I got the scan with and without IV contrast of my abdomen, pelvis, and chest. It’s cute how they always ask me if I have an underwire bra on or any such thing. I have to remind them — I’m a pro. (Who wore a metal-free slob suit to work also). I didn’t have to drink a Barium smoothie — so that’s a plus. As the CT tech was taking out my IV, he asked if I wanted him to leave it in because I was getting an infusion afterwards, which was news to me since I haven’t had an infusion in 10 years. So he took it out, and I went to “infusion” where it turns out they sent me for a blood draw and would have used the same IV had we left it in. Another needle in the opposite arm, and all is done. Then I waited for a nurse practitioner, Marie, to go over things with me. In the meantime, I got a notification that my bloodwork results we’re already in my portal (less than ten minutes after they drew it). Holy quickness. Things looked normal to me, and I was told someone would call me to review. Marie said that they would get results of the CT scans that day, but definitely not for a few hours — so I should go home and wait there. She did call me later that night and assured me that all was status quo. Nothing looked like it changed and my liver was probably not taking over my body like an alien life form.

Dr. Teitelbaum and I had our normal follow-up telehealth appointment the next week and she confirmed, things are still growing so very slowly, there is nothing to worry about it. It didn’t appear that my liver was causing the pain, and since the pain subsided in time, there wasn’t much else to do.

I had my injection in April, May, June, July - and then had new scans done. This time, still only minimal growth, but Dr. Teitelbaum said she doesn’t want to become complacent, and asked me to schedule an appointment with Dr. Soulen in interventional radiology to see if he things I should be moving to next steps. I was originally told this medicine works for 3-5 years in most patients, before the cancer outsmarts the meds. It makes me pretty nervous to be creeping up on the low end of that timeline. Especially since any cancer of mine is of course going to be smarter than the average cancer, right? So I can’t be shocked if they say that next steps should be considered soon. But I was kind of getting used to the idea of just pretending it’s not there and getting my backside injected once a month, forever. I thought the appointment with Dr. Soulen was this past week, but realized I missed a call where it was rescheduled for October 5th -- so I will update again after that one.

In addition to all of my routine cancer screenings/scans/treatments, I have also been subjected to other diagnostics recently. My OBGYN has been increasingly more demanding and the appointments are all so time consuming. I went in for an annual visit and the doctor recommended an endometrial ablation. Two weeks ago I had to get a mammogram (simply because I am nearly 40 and well, that’s the kind of fun stuff you do when you’re middle-aged). It took 8 days, but I received a little letter in my electronic file that started with this sentence...

WOOT WOOT! Again, not that we (or anyone) had any concern about my breasts -- but hearing that a part of me is cancer-free is always so uplifting. However, the radiology results lag makes me a little stressed, because I HATE waiting. Apparently there is a major radiologist shortage right now. And every other kind of shortage, but I can handle waiting a little for food or slightly longer lines places...

A few days later I got my ultrasound reports (abdominal and transvaginal) which also appeared normal (although they couldn’t find one of my ovaries, so I guess they can only say they are 50% sure they are normal). This Thursday, I have an endometrial biopsy and then HOPEFULLY NovaSure -- the endometrial ablation. Just one thing I’d like to get under control, ASAP. Fingers and Ovaries crossed that it comes back normal or whatever is needed so I can schedule this procedure. In the meantime, I am not opposed to rain-dances for menopause or an approved hysterectomy.

In December, I will have another Gallium scan -- you know the one so wild they only do it on certain days of the week at certain times and they tell you not to hold your kids after for a day or so because you’re still radioactive -- cool, cool. And that’s to make sure it’s still only in my liver and not traveling elsewhere, without a passport.

And to end this with a dose of kid-comedy... This weekend my kids asked me why I get the injections at home and I told them I like when the nurse comes and gives me a shot in our house...and they translated that to, “Mommy likes getting it in her butt in the dining room.” Hoping this isn’t the overshare they decide to present in school this week.

So that’s the update for now -- more to hopefully come soon. Love to you all for being patient in hearing “news” for me, but no news is typically, “Sam still has cancer but she’s alive and her normal, albeit crazy, self” (aka good news, I think?) Until next time...

Prognosis Pressure Popping Point

Every few months, after my scans, I have a telehealth appointment with my highly respected Penn oncologist -- Dr. Ursina Teitelbaum. She is a warm, knowledgeable, and down-to-Earth doctor. I love her. However, I like brashness. I like clearly defined diagnoses and treatment plans. I like explicitly calculated timelines and direct answers to my wildly disorganized stream-of-mind questions. In the medical world, no one EVER wants to give you this. Why is that? Well, science (something many people have recently been taking as theory, rather than researched conclusions) is constantly criticized for it’s ever changing rules. Those in the medical profession are never given the benefit of the doubt -- always ask for a second opinion, right? Medicine, by nature, is one of the most complex guess-and-check industries in the universe. So how can you blame doctors for giving vague responses, rough estimates, and a lot of “let’s cross that bridge when we get to it” mentality.

Does that make me any less of a psychopath demanding to hear the kind-hearted Dr. T. identify a date of departure like she’s a fortune-teller? No, no it doesn’t.

On my 39th birthday, after discussing a lot of “what does this mean, what does that mean” with the good doc, I bluntly asked her about my prognosis for the gazillionth time, to which she obliged.

My tumors are growing, ever so slightly, as a good NET does. The medicine is likely slowing that growth down tremendously. It’s working right now. At the rate it’s working, it would appear to keep working, enough that nothing else needs to be done, for 2-3 more years. This means, I don’t need to do anything other than scan, inject, inject, inject, repeat for quite some time. When the lanreotide injections stop working, some form of targeted liver treatment will occur (like embolization). On average, that works for 2-3 years and in rare occasions, it works a second time (so 4-6 years maybe). Then there are more “last ditch effort” treatments such as PRRT and a new trial that is in the works (and so far so good) right now. All of this information, I have been told, and told again -- but it still was so vague and didn’t really answer my question...

How long do you think I have?

Of course, I peppered in the assurance that I wouldn’t hold her to anything and wouldn’t be upset if she was wrong, but that I simply wanted someone with more knowledge than me, to give their best guess so that I could prepare for a life that will end early and the life of a family who will have to continue without me.

Dr. T. said, in five years, she thinks I’ll be “comfy” but she’s a lot less sure about ten years from now.

I wanted to hear this. Well, no. I wanted to hear that I was on a pilot episode of a Punk’d reboot and this was all some kind of sick, decade long joke. But if something is going to kill me, sooner than I should be killed, then I’d like to know when. Or at least I thought I did.

Maybe it was because it was on my birthday and turning 39 feels like the end of something. Maybe it was looking at my kids and thinking, I might not see them hit their teens. Maybe it was dealing with multiple trauma-related issues that arise in the students I teach daily. Maybe it was just the gravity of my situation, finally sinking in, after keeping it ever-so-slightly distant in my mind for the longest time. But it hit me hard.

I’m not ready. Not ready for death. Not ready for sickness. Not ready to plan for either. I’m so tired and drained by daily life, that I don’t have the energy to think about the what-ifs, even though they are more like the when this happens...

It’s hard to think about a timeline when it’s as long as this is. If someone said you had 6 weeks or even 6 months, you could say, well fuck. I’m quitting my job, traveling, spending every moment experiencing life with those I love. But 6 years, or 10, is like..well, I still need to put money in a 403B, just in case, and I need to plan for the hubs and kids during the A.D. years, too. You can’t go buck wild on life for 8 consecutive years while having kids, a full-time job, and general adult responsibilities. So, I go on with the daily rituals. I have stress and anxiety, I battle with weight and aging, I argue with people who have different beliefs, I worry about things I cannot control - and then I reflect on whether any of this even matters or if I’m just wasting my time.

I live for the weekends and down time, revel in the end of a marking period or semester, and feel a sense of relief as I get the kids to sleep -- and then I think about how stupid I am for letting time slip away so carelessly.

In the past two weeks, I’ve tried to think more about the positives, the things that I accomplish, the wins.

I asked for a definite prognosis and the remainder of my life was given a numeric value. Now, it’s my job to increase the actual value of the life I live.

Definitions belong to the definers, not the defined. - Toni Morrison

Scans, Birthdays, and a Good Old Fashioned Death Virus...

This past week or two, the kids and I have been super sick. A death virus that rivals the ‘rona, plus ear and sinus infections, has had us coughing a symphony of woes since the holidays. While I am super grateful that we’ve had a zillion negative rapid and PCR tests, I am seriously getting tired of dealing with this “cold.” We’ve all had multiple doctors’ appointments, antibiotics, and so many homeopathic and OTC meds. I actually went home early from work and took THREE sick days this week. I don’t know if I’ve ever done that, for something other than surgery/recovery/childbirth. I just can’t stop coughing. Long story short - I’m miserable. And now, Owen is starting to get sick too - so this is just fabulous.

On Monday 1/10/22, I had my CT scan (this time 4 months out). I drank a delish Barium smoothie, and radiology sent my report THAT VERY NIGHT to my oncologist. Unfortunately, I didn’t get the results (or word from a professional) until I badgered the office via the patient portal. If you have ever been waiting for diagnostic results -- you know that scanxiety is real, and it’s horrible. Being super anxious and quite annoyed, while super sick, was just the snotty icing on my phlegm cake.

Thursday 1/13/22, the report entered the portal -- and I was able to look at it and read that there was only “marginal growth” -- which is certainly a good thing. I was a little freaked out that there was a 5th tumor included in the measurements that usually is not there (despite having like 30-50 tumors, they consistently only measure and report change in growth on four of the largest). And I felt really frustrated that I didn’t get a call or more info from my oncologist right away. Dr. T. wrote me back later that day saying that it was a good scan, but she was going to look into it more because I asked her to tell me, how much “marginal growth” can happen until it becomes real growth? Today (Friday) afternoon she called me and said that after speaking with the tumor board and the NET radiologist, the growth is really minimal and she thinks this treatment will continue to work for years (obviously this is a super broad amount of time), and that when it does stop working, we will probably move to targeted liver therapy (chemo/radiation directly to those spots) -- something we’ve been told about but never really explored yet. (See image below wirh report - left is new, right is old).

I want to feel super positive about this, because it’s again, the best it can be. However, I can’t help but to just feel stuck. I’ve been stuck in cancer-land forever it seems, stuck in a pandemic, stuck in a tough job, stuck in parenting, stuck in health/weightloss, stuck in hobbies (or lack thereof), stuck in sickness this week...just stuck. And I just feel drained. I don’t feel like myself. I keep thinking about Tuesday being my birthday, and while I haven’t had much of a birthday in a few years, like the rest of the world, I feel like this year’s celebration may be a box of tissues, bag of lozenges, and an 8 pm bedtime.

And as I am writing this, Charlie comes running through the room hacking up a lung, only to vomit all over me when I attempt to help him blow his nose. Parenting, man. Side note — I’m super thankful for my mom and Owen’s mom who have been juggling our childcare during this shitstorm of a month!

I have an actual telehealth appointment with Dr. Teitelbaum on Tuesday (a true birthday present) and I hope to ask her more questions and get more of an opinion about things -- but I am pretty sure I’ll just hear the same vagueness I always hear, leaving me waiting for the other shoe to drop.

We are in a good place right now, and I am going to try my best to get into that good mindset, as well. Here’s to only three scans a year, marginal (or no growth) and seeing 39 years here on Earth. <3

Today was injection number 21. Hard to believe that this new normal is creeping up on two years.

My last scan in September was status quo, nothing new to report. I’ll have another scan in January (which is four months now, instead of three).

Recently, I’ve been reading the letters from Blue Cross that come to my house each month, stating the total expense for my care. Without insurance, Penn Home Infusion would be about $20,000 a month. How totally insane is that?

So today, I want to say I’m thankful for this huge-ass (literally) injection each month. (Shrek DVD for size comparison). And thankful that it’s free to me.

And thankful for all of you, rooting for me.

Just a quick update to let the world know, that after waiting a FULL WEEK (when I was told I would have results by Friday), I finally got NEGATIVE (benign) biopsy results for my uterus “fluff” removed last Wednesday during my D and C. Guys, I don’t have a third kind of cancer (yet), making 2021, not surprisingly, better than 2020 in the good news department. #cuethehappydance

Stable Summer Sammy

So good news, and bad news...

The good news is -- I had a CT scan on Wednesday and yesterday I got a message with results, and my tumors are STABLE!

The bad news is -- turns out this isn’t tumor weight.

Let’s catch y’all up to speed.

For the past few months I have been doing okay. We have been house hunting in the worst market in history (vomit) and trying to make our current space less of a mess and more of what we need to be happy (yay). The limbo we are living in is KILLING me and Owen and we’re lucky we have some great days to balance out this stress (and his home theatre in the unfinished basement seems to be helping him, just a little).

I have been very anxious and my restless legs have been horrible. For those who have never experienced, I don’t even know how to describe the discomfort -- but imagine you have an ache that is so consuming you need to tend to it constantly, while you’re trying to lay still. It’s kept me up til 2 or later many nights this spring. So, I have been taking 10 mg of Lexapro, and recently upped my ropinirole for the RLS (I’m still on a very low dosage, as it’s a serious med, but this seems to be helping). I also got a medical marijuana card and started trying a CBD/THC tincture to help with anxiety. (Three cheers for legal weed!) Unfortunately, I do NOT have that sorted out and can’t figure out a way to be less anxious and not high as a kite (at totally unpredictable times, like the next day), so this is probably not my go-to solution.

On May 24th (Charlie’s fourth birthday), I had my 15th Lanreotide injection. How insane is that? Next Monday, June 21st, I should have my 16th injection. I didn’t get the call yet - but usually that happens on Fridays. Med delivery on Sundays, someone comes out to the house on Mondays, all good for four more weeks. Still no serious side effects from the meds and no major pain (except that day usually). However, I do get this weird phantom pain the days leading up to the next injection -- which is super bizarre. But if I’ve learned anything during my medical struggles is that nothing about the human body isn’t bizarre. Especially mine.

Wednesday was the last “asynchronous” day of the year and after “school,” I had my CT scan in Valley Forge. I love my tech there, and hope she and I have a long, every three month relationship -- haha.

Yesterday, I had my monthly bloodwork at Labcorp (which has not happened since I returned to in-person teaching, even though it’s on the way home from school, because I am incapable of functioning on any sort of schedule anymore because of covid). Everything was fine(ish) -- some levels a little above average, some a little below, but overall, good.

At 2:45 today, I have a presurgical consult/appointment with Abington OBGYN regarding some lady part issues I have been having. Last month, I had a endometrial hysteroscopy and they saw some questionable (non cancerous, they think) things, so on June 30th, I will have a Hysteroscopic endometrial polypectomy (I think?) to remove polyps, fibroids, tissue, whatever. I am going to request these are all biopsied as well. Can’t hurt. Well, I mean, the procedure may hurt...but you get my point. I’ll update when I have more information about this...adventure.

Today is the last day of school for us teachers. It’s been an insane year. Truly. I am so thankful for my people and for a job was flexible and manageable (most days) during this pandemic and allowed me to receive the diagnostic and treatment care I needed. I am super nervous about how to manage life-long cancer when the world goes back to “normal,” and I guess I will see how that works in the fall. Until then, I can’t wait to spend the summer “living” life “normally” (almost sort of) with the fam and friends. Lots of love to you all! <3

Happy(?) Anniversary(!)

It's been awhile since I've updated the old blogster, so I wanted to provide you all with the latest and (not so?) greatest. Nothing is particularly bad, but this is a cancer blog, so...

On Monday March 1st, I will have my 12th Lanreotide injection. 12 injections. I can't believe it's been a year. It was Tuesday, February 11, 2020 that I got the call from Dr. Rose. I had a CT scan the week before (Friday, Feb. 7th) and he got the results on Tuesday afternoon and asked me to come in first thing Wednesday morning. Fast forward through lab work and biopsies and scans and more lab work, and my first injection was March 9, 2020. I've had cancer (again) for a year. And to think this was discovered because I had heartburn and a doctor who didn't trust that my body was doing anything normal, as it has a history of being a bit of a jerk.

Today, I went to Labcorp and got my monthly bloodwork done for my oncologist, and then also got the bloodwork prescribed by my gynecologist (I'll explain). It was a quick in and out kind of thing, but since I was listening to a department meeting via airpods, it was a little tricky. Luckily, my "sorry, I'm also in a work meeting," didn't seem to faze them...sign of the times?

In addition to my oncological adventures - I have also been dabbling in dental crises. I had a filling break in 2019 and I made the mistake of thinking I would wait until I was done breast feeding/my insurance kicked back in to get it taken care of. Then Covid happened and I avoided any non urgent appointments. Then a second filling broke and again, I was just going to wait (except it was jagged and bothering me). So I made an appointment for the holiday break so that I didn't need to figure out childcare (we didn't want to expose anyone else). Fillings were drilled out and refilled, only to leave me with a HORRIBLE pain in my mouth. So when I went on leave, I made another appointment, and was prepared for a root canal (as they believed I would need). I thought I wouldn't need childcare and this would be okay, but then I was called back to work. Luckily, I didn't need the root canal - and they were able to fix things - but it was such a hassle and anxiety ridden event. And because one additional issue is never enough -- I also have had some questionable "lady" issues that I won't delve into here, as I don't want to scar any children (or men reading). So I had a telehealth appointment with my OBGYN forever ago and they recommended going in for a mammogram and chest ultrasound (scheduled for March), and a pelvic ultrasound in February (results were normal), additional blood work, and a glamourous procedure called an endometrial biopsy. Fingers crossed I am not starting a cancer collection, but rather just going through menopause - something I may actually be looking forward to at this point. In other news - I am currently teaching virtually, as I did from September 2020 through January 2021, until the district made a two week attempt at hybrid instruction - which undoubtedly failed because the teachers - perhaps me, specifically - were out and sabotaging the students...I'm not triggered, you're triggered. So between snow days and schedule changes and asynchronous learning days and teacher changes, my students are all sorts of confused and I am losing my mind trying to track them down and get things back in order...hopefully just in time for us to switch back to hybrid again, you know. I am still not sure of my plan regarding coming back - as I have received two doses of the vaccine (hooray, cancer! and hooray, special education!) - because I haven't spoken to my doctor or family about it definitively, but I hope we get a bit of a warning so I have time to make a thoughtful decision.

March is a big month of medical fun and I can't wait. Stay tuned for some updates before April (I hope)! And I promise to not play any weird April Fools jokes about cancer or covid or anything of the like.

*Bright Side: NORMAL pelvic ultrasound! Guys, I'm normal. There's a first for everything.

*Dark Side: Diagnostically overwhelmed and still pandemicing. (Is that a word?)

*Next Steps:

3/1/21 - Lanreotide Injection #12

3/19/21 - Mammogram, Ultrasound of chest, CT scan

3/26/21 - Endometrial Biopsy

3/27/21-4/4/21 - SPRING BREAK, Y'ALL!

*Working from behind a screen GIF -

Déjà vu-mitting

Last night I got really sick. Horrible upper abdominal pains, vomiting and unable to keep anything (even water) down. I know I am totally crazy for thinking this - but this is the exact same thing that happened last January. Coincidentally, the first Thursday in January, 2020. This episode was so scary, almost ER visit scary, that it forced me to go to the doctor, who said she would be most comfortable with me seeing my oncologist, and several appointments and scans later -- cancer.

On Tuesday I had an appointment with my primary regarding my horrible restless legs syndrome, resulting in starting ropinirole - a drug I took back in 2009-2015ish. I stopped when I stopped taking traditional birth control, as my restless legs also got increasingly better without the BC. Then, during pregnancy, the restless legs got bad again, and kind of stayed that way through breastfeeding/second pregnancy, etc. I have been thinking about going back on medication for awhile now, and decided it was finally time. I had a little hesitation, because when I was on it previously, and also on birth control, I sometimes would get REALLY violently sick and nearly pass out. After many doctor’s visits, and discovering it was happening the first week after my period, my gynecologist finally figured out that it was an issue with drugs clearing through my liver. With the RLS meds and the BC being stronger during the first week of the cycle, my liver couldn’t hack it and it was making me ill. I started to not take as much RLS medication the week of the new pill pack and this resolved.

Now, I can’t help but to worry that issues with drugs clearing through my liver, a liver that is riddled with cancerous tumors, or drug interactions (when I am on Lexapro and Lanreotide, both now), could be more serious or problematic.

I have a call into my primary and plan to also email Dr. Teitelbaum to make sure I am not doing something dumb (I did check in with her before going on the new meds, and was told it shouldn’t be an issue).

Perhaps it was just my body violently reacting to the utter chaos in the world. Trying to get 2020 the hell out of here so the real 2021 can begin. Between what happened in DC, post-holiday blues, starting virtual school back up this week and being in the process of deciding what is best for me, the family, and our finances in February when CHS goes hybrid, I think it’s enough to make anyone puke.

Here’s to a weekend of recovery (and some family time, since our post-dentist quarantine is up and the Pepinos have been out of school for a few weeks). Let’s hope some social normalcy, some TLC, (and maybe the 25th amendment) help to sooth my broken body.

** Update - primary says may be a drug reaction. Stop the RLS meds and take Xanax to sleep. Every night. This seems excessive.

#2020begone #neveradullmoment

Feeling like ass GIF:

Physiologically - stable. Mentally - wobbly.

Last Wednesday (12/16/20), I had a CT scan with contrast, and my first echocardiogram - after my tenth injection of Lanreotide earlier this month (12/7/20). ( I shared an ever-so-tasty Mochaccino Barium smoothie picture on Facebook).

Results came in, and I had a call with Dr. Teitelbaum on Friday afternoon. I am happy to share that I am “stable” (at least the tumors are, my mental health leaves something to be desired) and that the treatment is working! My tumors had no growth (or so I was told by Dr. T.), but in fact it appears that the two largest both shrank by one millimeter in width each, according to the radiology report. I feel that this itsy bitsy victory is celebration-worthy because, well, 2020 is the worst - and even a teeny tiny win is worth cheering, right?

I imagine, if I could email my body right now - it would go a little something like this:

Hey tumor-fighting-cells,

You rock! You made a very small amount of progress and I see you trying and I know you will persevere. We’re in this together. Reach out if you need anything. I am here (virtually).

- Mrs. Sakovics (cue corny 2020 teachable moment music)

Echocardiogram was all good - although my lab work has been pointing to an iron deficiency/anemia, the heart is still pumping, probably full of some ice cold metalloid at this point -- a reference to both my ever-so-miserable demeanor and my over-involvement in Chemistry this year. Additional labs will happen this next time and hopefully determine what is going on (and maybe we can add more supplements/injections/medical intervention to my ritual). Dr. T. says I don’t need another echocardiogram for 2-3 years.

I think Lexapro (10 mg) has been helping my anxiety and keeping me more level - although I still have the occasional attack and definitely lose my patience at home, pretty much daily, it’s better than it was. I also think it’s helping me pack on some sweet winter lbs - on top of this thing called eating all the time, my new “what the hell else is there to do” covid-friendly hobby. Luckily, no one has asked me to wear clothing with zippers in like two years.

Overall, I am healthy, we are healthy, and I’m currently keeping cancer at bay. I mean, I am letting it hang out rent-free in my liver for the next, ever, but it’s on strict quarantine orders. And the radiology report said that everything else in me is “unremarkable” which is, actually, remarkable (to me). I have never been so happy to be unworthy, unlikely to be noticed; common, ordinary.

Side note - TEN INJECTIONS! Did you see that? That is pretty damn close to a year. Can you believe I was (re)diagnosed almost a year ago? I feel like time is both flying and standing completely still (and possibly doing that thing it did on LOST), and I have no idea how this year happened. It definitely didn’t help that I had a baby, took off work, tried to write a dissertation, got cancer, and three weeks later the world imploded with COVID (cue race riots, election drama, and FB World Wars, etc.) Fast forward to December 2020, the moment we’ve all been waiting for, the end of the crappiest year ever...which is clearly going to continue right on through 2021. (Hip Hip!)

So, in the spirit of a new year, and a new me, and a blog that I barely write in - I am going to try to keep everyone up to date, here and there (since now my scans are probably going to be every four months instead of three), and also try to keep things positive and humorous and honest (as per usual).

Some quick next steps:

Lab work (including iron/anemia panel), Injection #11 - January

Lab work, Injection #12 - February

Lab work, Injection #13, (hopefully) unrelated Mammogram & Breast ultrasound - March

Lab work, Injection #14, CT Scan - April

For your enjoyment - here is my NC17 chest/crotch shot for y’all.

THIS IS WHAT MY INSIDES LOOK LIKE! I’m practically a biology book.

Today is World NET Cancer Day.

In celebration, here is a quick and general update.

1) I had my ninth injection, at home, yesterday. The home nurse (from Penn) came out this month and last month. Rather than every four weeks, I’m now scheduled every thirty days. I don’t know why. While the home injections are nice, with Penn I’ve had to go to labcorp instead of the home phlebotomist. At least I can get that done 15 minutes from home.

2) My bloodwork has all been fine, except my glucose levels have been rising. This worries me because they were never high before. One of the potential Lanreotide side effects is diabetes and I just can’t handle one more thing at this point. Or giving up vices. Come on, universe.

3) I am so drained and not myself. Between the pandemic, virtual teaching and the end of first marking period, two toddlers, and the election, I feel like all of the life has been sucked from me. Leaving Owen with a zombie wife who just spins in circles picking up toys and cat hair, writing IEPS, making food, running laundry, and wiping butts all day long. If there wasn’t a global pandemic, civil unrest, and you know, work, I’d just disappear to an island for a little. Or a lot.

Next steps (summarized):

I’ll have an injection early next month (I don’t know when since it’s “about thirty days” and not exactly four weeks). And then severals appointments (an EKG and a CT scan) and a telehealth appointment with Dr. Teitelbaum. I’ll have had ten injections under my belt and hopefully they’ll still be working. 🤞🏼 It’s so crazy to think this has been happening for 3/4 of a year already. Time flies when you’re having fun, right?

And to sum things up - here I am enjoying some new WFH attire I got!

P.S. I want to give a quick shout out to Jill and Sarah who ran for stripes last weekend in my honor! I feel lucky to have such an amazing extended family!

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