nettheworldonfire

[nettheworldonfire]

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.

[nettheworldonfire]

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!

[nettheworldonfire]

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...

[nettheworldonfire]

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

[nettheworldonfire]

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

[nettheworldonfire]

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.

[nettheworldonfire]

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

[nettheworldonfire]

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

[nettheworldonfire]

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 - 

[nettheworldonfire]

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:

[nettheworldonfire]

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. 

[nettheworldonfire]

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!

[nettheworldonfire]

I should have posted yesterday, because I got the results in RECORD TIME (I left my CT scan around 9:15 am and got a call around 11:20 am). Dr. Teitelbaum said that the tumors are shrinking!!! She said that’s VERY rare and VERY good and that we couldn't possibly ask for anything better. (I mean other than not having cancer at all I guess). Plan is to stay on the Lanreotide injections and to hope they keep shrinking these bad boys. Most patients on Lanreotide experience stasis if it works, not shrinkage, so for the first time (maybe ever), I’m the good kind of medical anomaly! (And this is the good kind of shrinkage.)

Hopefully this means the drug will work longer for me (the average is 3-5 years) and that if it stops at some point, it will have at least set things back enough to give me more time to try the other options. Time is all I can ask for right now!

Dr. Teitelbaum is working on getting everything set up for my next injection and bloodwork in October through Penn. In a perfect world, these will happen in my home to disrupt my work schedule as little as possible. In 2020 fashion, I’ll probably have to drive all over creation and fight with a bazillion people to get things done. But I will get things done.

Finally Some Good News (and another Seinfeld reference) GIF:

[nettheworldonfire]

My morning “coffee” tastes different today.

So anxious about getting these results. Fingers crossed!

[nettheworldonfire]

Quick update!

Today may have been the last time that I visit the staff at office 302 in Nazareth hospital’s oncology department. Seventh injection has finally graced my left (upper) buttcheek and I can feel it working already. Just kidding, but it sounded good.

And because I forgot to post this screenshot yesterday, here is the final (and successful) call (shortly before it ended). Notice the one hour and thirty five minute time lapse.

I did speak with a manager later that night who was just checking on me (probably because I sounded homicidal when I spoke with her earlier in the week and because her name was Samantha too and maybe she was worried I’d give the name a bad rep if I went postal and ended up on the news) and she is going to call me back on October 1st so we can make sure this doesn’t happen again. Thanks, Samantha.

My rockstar hubs is going to run out to Valley Forge on Monday or Tuesday to grab my delish contrast drink so I can take it two hours before my CT scan on Wednesday morning (a yummy 6:30 am breakfast, I’m sure). Can’t wait to see these results and hopefully take another deep breath. Here’s to moving forward!

[nettheworldonfire]

Tribulations

The last few weeks have been, challenging, to say the least. 

On July 30th, I had my sixth injection, and all went well.  Dr. Rose told me he is, in fact, retiring, and I am working on getting everything transferred over to Penn/Dr. Teitelbaum.  Half a year of cancer, new normal, and monthly injections.  Seems surreal that so much time has passed, but here we are!

Then the end of August crept in, and we started “back to school mode” which spiked my anxiety.  My district teetered between special education students being virtual or in person (and there will still be some changes) and the unknown has made my head spin and heart palpitate.  Between the normal start of the year jitters, Covid-19, and now virtual synchronous and asynchronous instruction, I’m all over the place.  And I won’t even get started on the insane amount of special education responsibilities our department has on top of it all.  Need to give a huge SHOUT OUT here to my special ed team, CSD colleagues, and friends - who are the only reason I haven’t ripped all of my freshly box-dyed hair out of my aching head.  Thank you for being YOU. <3

The home phlebotomist couldn’t get through to me via phone for some reason and just showed up mid-PD session on August 25th (my first day back in “session”) and I got my blood drawn.  It was definitely a shitshow moment to start the shitshow school year - but it got done, and all was fine.  I also learned that my phlebotomist, who is from Jamaica, prefers cooler weather to the insane heat, a stereotype that I must admit I am guilty of perpetuating (people from tropical climates prefer hot weather).  Anyway, that was corrected and I’ll do better.  Bloodwork came back normal!

The next day, August 26th, one day before my 7th injection was scheduled, I was told that the meds had still not arrived at Dr. Rose’s office.  This was annoying, because I had made specific plans with work and childcare to ensure I could go to his office at 10 a.m. on my first week “back” at work.  Still, it happened before, so it wasn’t totally unexpected and I knew I could handle a slight change.  Laura (my personal buttocks injector and nurse extraordinaire at the office) said that it could come on Friday or Monday and to plan for that (but she would call).  Long story short, it didn’t.  It didn’t come that week, or the following.  I’ve spent hours on the phone with Dr. Rose’s office, Alliance Walgreens Pharmacy, and Independence Blue Cross Personal Choice.  So has Laura.  I’ve offered to pay the approximate $10,000 out of pocket (with a promise of reimbursement of course).  I’ve offered to go to different locations.  I’ve emailed Dr. Rose and Penn doctors begging for a solution.  I morbidly complained to every person I called that THIS IS THE DRUG THAT IS KEEPING ME ALIVE.  Like hey dude, I know you just answer phones and transfer calls and all, but this medication STOPS my CANCEROUS TUMORS from PROGRESSING.  This cancer WILL KILL me one day.  I don’t want that day to be today.  Thanks.  

Unfortunately, there was some paperwork error and literally HOURS AND HOURS of “let’s call this department” and “I’ll escalate it to my manager” and “we have to get this person on the line” and finally, today, I’ve spent over an hour and a half on a call and I THINK it’s being handled (I am still ON the call as I am typing this).  Today I am weeks post-due date for the injection (and unless it’s gets overnighted tonight and makes it to the office before noon tomorrow, I won’t be getting it this week at all).  I am livid.  I am sad.  I am anxious.  I am painting my nails so I don’t bite them all off.  I am biting off the polish and repainting them.  

Dr. Soulen and Dr. Rose both said that this delay shouldn’t have any long term lasting effects on my treatment or progression of tumors, but I imagine it can’t help, right?  I mean, it was WORKING!  Now what?  Next week I have a CT scan and I am worried that we will see progression.  Or that there won’t be any more necrosis (which their hopefully would have been).  I am just so annoyed and stressed and disappointed by all of this.  

Phone call has finally wrapped up.  The issue had something to do with the drug being listed as pay now and be reimbursed, versus pre-authorized for coverage...and apparently they don’t allow that to happen when the drug is so costly because they cannot guarantee reimbursement.  Why this happened on injection 7 and never before, no one seems to know.   They said that everything is now sorted out, and I should be good to go (meaning once the audit department reviews my case and pushes it through, it should go to shipping, and be overnighted to the doctor’s office, so there is a slim chance I will be able to get my injection tomorrow (only 15 days late).  If not, Monday or Tuesday.  

I wish I could say I was relieved this is my last injection with the Jefferson team, but I still have no idea how Penn is planning on doing them, and I worry it will be just as complicated.  

In other news, last week (the first live-online-teaching week), I got my flu shot on Monday and some sort of reaction on Wednesday.  I was so violently ill (vomiting, chills, fever, shaking, bed-ridden) for about four hours.  It was HORRIBLE!  I got a wave of the same issues the following day, but nowhere near as bad.  Then I had about a week of feeling like I was hit by a bus - incredibly sore (abs, obliques, ribs, etc.), headaches, and weakness.  I felt so drained.  I finally feel like I am out of that cloud today!  (Getting old is the pits, by the way).  Then Trixie was having some pee problems and I had to get her into see the vet (she is totally fine and I think I was overreacting, but now I am committed to paying like $800 to making sure she’s in pristine health - other than being like super, duper fat, of course). 

So now it’s September.  I am back at work and so very grateful to my mom and Owen’s parents who are caring for the kids four days a week so we can stay safe and keep everyone healthy (other than the death-flu, obviously).  I don’t know what I would do without our amazing support system.  My little family is very lucky. 

I am feeling like a medical disaster, a bad mom, a horrible rescue board member (really have zero time to get things done for Lucky You, which kills me), and a half-assed online teacher.  I don’t know when this feeling will let up a little, or when I will be “myself” again.  Hoping soon, because this chick is cray and Owen may be looking for his next wife BEFORE I kick the bucket if I don’t play my cards right.

* Next steps:

9/2020 - Injection #7 (last Lanreotide at Dr. Rose’s office)

9/2020 - Need to pick up my contrast for my CT scan in Valley Forge 

9/16/20 at 8:30 a.m. - CT scan in Valley Forge (instead of my super close Willow Grove location)

9/22/20 at 9 a.m. - Telehealth appointment with Dr. Teitelbaum

10/2020 - Bloodwork and Injection #8 (TBD with new Penn plan)

2020 Teacher GIF:

[nettheworldonfire]

Less Than.

It’s been awhile.  Let’s catch you up to speed.

June 13th I had a CT scan that showed NO progression, and POSSIBLY necrosis on some of the tumors on my liver.  (Necrosis = death, so yay!) Dr. Rose said that was as good as we could have hoped for and thought we should move forward with possible embolization through Penn since they seem to be the experts in NETs. He wasn’t sure if the clinical trial of chemo/bland embolization was running currently due to Covid, so he said I should reach out.   I scheduled the consultation appointments, which were originally not until August, but got bumped to July 22nd.  

My in-home phlebotomist was a no-call, no-show on the 30th, so I called my office and found out there was a mix up, and they were scheduled to come the same day as my injection, so I had to go to Labcorp in person.  I was pretty anxious about that since we aren’t do to much real-worlding these days, and they may or may not be doing Covid testing there, but I mustered the courage, and went.  There was only one person in the waiting room and only two employees, one of which dealt with me from beginning to end exclusively.  Everyone was masked up; it was smooth and painless. (Shout out: I ALWAYS have a good experience at the Labcorp on Easton Road in Abington, near the hospital.  They are rockstars!) Those results came back looking a-okay. 

I had my 5th Lanreotide injection on July 2nd and met with a very stressed Dr. Rose who still may or may not be retiring, due to some major changes with the hospital. He said labs and scans were good, and to keep him posted about my appointments with the folks at Penn.  Overall, I felt fine after the injection.  My GI issues are still relatively prevalent after the Whipple, so I never know if what I am dealing with is “normal” or an issue.  And right now, with you know, the world crumbling, it could just be stress.

So fast forward to the 21st, the day before my appointments, and I get a call that Penn doesn’t have the scan images or pathology report and that maybe we should reschedule my appointments (you know, the ones I’ve been waiting a month for).  They said the problem with this was that the doctors like to look at them in advance.  Although, a point I brought up to the nurse, I don’t see how much advance looking was going to be done after 6 pm the night before.  So we rescheduled my 10:30 a.m. call with Dr. Soulen to 6 p.m. so there was time to review, in the hopes that SOMEHOW I could get both reports and images to their office between the call and the appointments. Without any other options, my gracious husband made the one hour drive, and carted them into Penn at 7 am on the 22nd.  (Only to spend 20 minutes there looking for the building, since I was never told any information as to where the doctor was located with my appointment being through telehealth, and like a dummy, didn’t ask.)  Images delivered, and I get a call at 9:45 ish saying Dr. Soulen is still calling me at 10:30  again (and now my mother, the child pacifier, won’t be here in time, since I told her to come later when the appointments were rescheduled).  

My first call was with Dr. Michael Soulen in interventional radiology.  I introduced him to the two-legged noise makers who would provide a classic toddler soundtrack, and he seemed pleasantly on board with the situation.  

My mom did show up during the call just as things got hairy (Charlie had all the cushions off of the couch and my cat litter barricade was no longer stopping Olive from making a bee-line for the steps).  Gram to the rescue, as per usual.

Dr. Soulen liked my June scan.  He said it was great because that meant we didn’t HAVE to embolize (despite him mentioning several times how seeing a liver like mine makes him drool because of how much he enjoys embolizing livers).  Dr. Soulen said that the treatment plan should be “to ride the horse until it gets tired” because we only have so many horses.  Therefore, we stay on the Lanreotide until it stops doing what it is supposed to before trying something new, as the treatment options are limited and there isn’t data on whether or not they can be repeated multiple times successfully.  Especially with someone who has a history of a second cancer (Hodgkins) and chemotherapy.  He also clarified some things about the embolizations.  He said that a bland embolization and chemoembolization both cut off the blood flow to the liver, something we cannot do, because during my Whipple they removed a duct that helps my pancreas get rid of bile and bugs, which now filter into my liver.  Normally, this isn’t a major issue, but when you embolize a liver like this, it will cause a liver abscess in 20% of patients, landing them in the hospital for a while (because a serious infection like this requires IV antibiotics) and obviously with two little ones and Covid, that’s not something I’d like to risk right now.  There is a third type of embolization - radioembolization - that instead of cutting off the blood flow, shoots in little radioactive beads that are attracted to the tumors and give a very direct dose of radiation to them.  This makes patients a bit more fatigued, but only has a 5-7% rate of abscess or infection, which is better, of course.  That being said, none of this is the plan for now, and may not be for several years, as long as the Lanreotide keeps doing its job (he estimates 3-5 years at best).   

With all of that information and hearing that the Lanreotide is not expected to work forever, I really wanted a more accurate prognosis, although nothing is certain in the world of cancer.  He said that he has some patients who do these drugs and trials and make it into the double decades - but those are usually the grade 1 tumor patients (I am a grade 2, grade 3 being worse).  So, he said a single decade is more in tune with what patients in my situation should expect - but that 5, 10, 15 years is possible.  While I WANTED to hear some real talk, and I didn’t expect to hear that everything is good, that was still a little jarring.  At 37, and with a 1 and 3 year old, 15 years might not even get me to high school graduation, and that’s the high end.  Thinking about leaving my family in the next 5-10 years is beyond terrifying.  He said that my liver right now is functioning as it should.  It’s “more cheese than holes.”  I should be glad for that.  I am.  

Here you can see my two scans.  Left is June, right is February.  This may not be the perfect shot (I was trying to take a screenshot while we were talking), but you can kind of see some of the white spots (cancer) with some blackness (necrosis), so, that’s cool.  

The second call was with Dr. Ursina Teitelbaum, the oncologist who specializes in neuroendocrine cancer.  She was awesome to chat with, as always, and agreed to take over my care - something I needed to ask because Dr. Rose is ready to pass me along like the worst re-gifted patient ever.  I also asked her some morbid questions and was particularly surprised to hear her response, too.  She said had my June scan indicated progression in any way, it would have likely meant a 1-2 year prognosis.  I am a little annoyed and confused as to why no one said anything like this to us in previous visits.  I mean, you’d think someone with toddlers deserves to know that they may only have 12 months to live, especially when they are currently spending their time in quarantine and not doing any of the things that mean the most to them.  She agreed with Dr. Soulen, we should hold off on the embolization for now, and wanted to see me again (virtually) in September.  She also said she would get another scan scheduled for me for before that appointment and that we could plan for someone to come to my home to do the Lanreotide injections, rather than have to get into Penn each month for that when I am trying to work and parent this fall.  

One thing that she said that stuck with me, was that she believes this pandemic is going to get a lot worse this fall, and that regardless of what happens, we should be careful, but not limit visits with loved ones.  We need our family and friends around us for support.  We need that connection.  While maybe her message was to “live like you are dying” because I am, in a way, dying, I think she is living this way too.  I think she believes that the damage that months and maybe years of this will do to our psyches may be greater than the risk of getting Covid (not worse than actually getting it, but again, being “safe” and careful, in masks, etc.)  Just something to think about, especially for my family.

In other news, my anxiety has been through the roof (not surprisingly so - I did get diagnosed with cancer exactly a month before we got hit with a global pandemic, ya know).  After a talk with my primary, we upped my Lexapro dosage from 5 mg to 10 mg last week.  According to my OBGYN, that’s still a very low dosage (they said they prescribe 20 mg to woman for PMS sometimes, so there’s that), so we will see.  I really think I need something for panic attacks, other than a 32 ounce frozen margarita from Mad Mex.  They get costly.  My primary has given me a couple Ativan doses to hold me over as the new dosage of Lexapro kicks in and wants me to follow up in three weeks.  Til then, expect more of a “hot mess” than you’ve seen before.  Please note, hot does NOT indicate I look good right now, and “seen” is perhaps the wrong word, too, since, I barely SEE anyone.  Just forgive me, I’m losing it.  

* Dark side: Change in plans: Cancer probably WILL kill me, afterall.  

* Bright side: Being chronically ill may help to keep me working from home this fall, instead of returning to the cesspool known as high school.  Maybe.

* Next steps: 

7/27/20 between 8:30-10:00 a.m. - home visit from phlebotomist 

7/30/20 at 9:30 a.m. - Lanreotide injection #6 and appointment with Dr. Rose

9/20 - Next CT scan in Valley Forge (instead of my super close Willow Grove location), date TBD

9/22/20 at 9 a.m. - Telehealth appointment with Dr. Teitelbaum

Morbidly accurate GIF: