Mardi’s Story

Site created on February 5, 2018

Welcome to The Boobie Bulletin!  I'll be using this site to keep family and friends updated throughout my journey to beat breast cancer.  I appreciate your support and words of encouragement.  Thanks for visiting!

Newest Update

Journal entry by Mardi Kaplan

It’s been a long time (2 ½ months) since my last post, and I wish I could say it’s been uneventful in the cancer realm.  When I was diagnosed and when I started treatment, I remember a lot of people saying things like “before you know it, life will be back to normal…”  And as I got deeper into the throes of cancer treatment, I heard from many survivors, and learned myself, that you never get back to “normal.”  Sure, there’s a “new normal” that exists, with day-to-day routines, work, family stuff, friends, travel, and plenty of fun (I’m so grateful that throughout all of this, I really haven’t been deprived of fun!).  I’m “normal” in the sense that I get caught up in silly stuff, I bitch about first world problems, and complain about the weather (as it seems it may never get/stay warm in Chicago this year).  But this new normal is regularly infused with cancer – research, fears, feelings (physical and emotional), body adjustments, doctor appointments, support group meetings, medical expenses, tests, trials, weird hair phases, and drugs upon drugs upon drugs.  Before going through it, I don’t know that I would’ve realized quite how much cancer takes over one’s life – even after treatment is “over” (which I put in quotes, because with the frequency of my visits to Northwestern, I’d argue that it’s definitely not over). 


And now for the details that you’ve come to expect from me… (which I write as much for myself as I do for all of you – I want to document these experiences so I don’t forget any of this (not that I really think I ever could)).  

Shortly after my last post, I took my first big/international trip since my trip to Morocco, 3 days after I was diagnosed.  Jamie and I met her uncle, Rick, and his girlfriend, Laura, in Greece.  I could share many details about our trip, but this blog is really about my cancer experiences, so I’ll just say that the trip was great!  Beautiful sights, amazing history, and so much delicious food!  One key takeaway from this trip is my discovery that I actually do like feta cheese, after years thinking I didn’t, although the feta in Greece is better than the feta in America.  :)  The reason I’m even including my Greece trip in this post is because of a cancer-related near panic attack an hour before departure.  Jamie and I took a Lyft to O’Hare, and we were pleased to have arrived early enough to enjoy our time in the international terminal before taking off.  Prior to the trip, I had emailed Lori, my lymphedema therapist, to get her opinion on when/for how long to wear my compression sleeve.  I’ve been told to always wear it while exercising and flying, but not while sleeping (as it can have a tourniquet effect if you’re sleeping, since you’re not moving).  I have a different sleeve, intended to wear while sleeping, that I wear every night.  Since this was an overnight flight, I was hopeful I’d be sleeping, though I also realized it was unlikely that I’d sleep for THAT long without moving.  Lori told me to wear my compression sleeve for the full flight, and for 24 hours after arrival (except for showering, sleeping, etc.).  So, on the way to the airport, I went to put on my compression sleeve to get prepared, and then quickly changed my mind.  It’s not the most comfortable thing, so I thought I’d wait to put it on at the airport considering how long I’d be wearing it.  (Side note, I’m so glad I stopped wearing it 100% of the time in January – life without it really is more comfortable, and thankfully, my swelling has stayed consistent and hasn’t gotten noticeably worse.)  So I put the sleeve and gauntlet (fancy name for the fingerless glove, which totally makes sense, not) back in my bag (or so I thought).  Jamie and I were enjoying our dinner at the airport, and I decided I’d put on my sleeve for real.  I started digging through my bag, and the initial worry quickly became more frantic.  I couldn’t find my sleeve.  I tried to call the Lyft driver, who didn’t answer.  Then I remembered that I had packed another sleeve in my checked bag.  Long story short – we had to leave the secure area, and we had enough time for the airline to get my bag from what I envision to be the dungeony depths of O’Hare.  I pulled out the packed sleeve, re-checked my bag, went through security again, and had an uneventful flight to Zurich, where we had a quick layover before heading to Athens.  Jamie was a trooper – so supportive and helpful while I was in tears, and even brainstorming ways to create a makeshift compression sleeve with items we could buy at O’Hare (compression socks on my arm?).  Turns out the driver found the sleeve and gauntlet in her backseat and returned them to Chicago’s Lyft office, where I happily picked them up after my trip.  Just one way that the impacts of cancer appear when you least expect them.  And a reminder to always make sure you have everything with you (this is definitely not the first time I’ve lost something I need or really like)! 

A
 couple of days after I got home from Greece, I had an appointment scheduled for a bone density test.  This is pretty standard for women in menopause.  Plus, I’m on an aromatase inhibitor (AI), called Arimidex or Anastrazole, which depletes my body’s estrogen supply.  Since bones like estrogen, it’s good to get regular views of my bone density to see how they’re tolerating the lack of estrogen.  The test itself was easy – lay on a table, fully clothed, while a tech guides the machine to look at my pelvis/hips/low back.  I guess these are the areas they are most concerned with as it relates to bone density, and whatever is happening in these areas tends to indicate how dense (or undense, if that’s a word) my bones are.  The whole thing was fast and easy, though I think it’s worth mentioning the odd technician.  At first, I just thought she was friendly and nice, when she asked for my weight and told me she was happy to weigh the same, even though she’s 6 inches shorter than I am.  I took it as a compliment.  Then she proceeded to tell me about her stubborn tummy fat, though she doesn’t really care much since her husband, who’s apparently super hot, still finds her attractive.  They even walk around in their “draw-s” (why do people refer to their underwear as drawers?).  She’s turning 60 this year, and she’s excited to have a weekend stay-cation in River North, spending time in a hotel with her sexy man, and enjoying some of the nice restaurants that she doesn’t know how others afford when it’s not a special occasion.  And I thought I was an over-sharer!  Let’s just say I was not in the least bit upset to be finished with that appointment.  I got the results at my next appointment with Dr. Flaum.  She told me that I have osteopenia, which is essentially a precursor to osteoporosis.  I was bummed to find out about the osteopenia at my baseline test…I was hoping it would show bone density within normal range, knowing that it’ll probably get worse over the next 5 years on this combination of menopause inducing and estrogen depleting drugs.  Dr. Flaum referred me to a bone specialist – an endocrinologist who focuses on bone health.  The one she referred me to isn’t taking new patients until 2020, but I got an appointment with a colleague of hers in August (which still seems like kind of a long time considering I made the appointment in early April, but better than 2020).  Dr. Flaum anticipates that the bone specialist will suggest I add another drug to my growing list of medications – an injection that’s given twice a year to help prevent osteoporosis, and improve the density of my bones.  She also told me this drug has an added benefit of potentially helping to prevent metastasis of breast cancer to the bones.  She doesn’t put patients on it for this reason, but if someone has to take it for its intended bone density purpose, then it’s a good bonus.  I’ll keep you posted once I see the bone specialist in August.  In the meantime, I’m trying to do good things for bone density, like weight bearing exercise and daily calcium and vitamin D supplements. 

On April 4th, I had my 5th lupron shot, and it was also the day I met with Dr. Flaum to begin a clinical trial, called SWOG 1207.  All of my prior lupron shots have been administered by a nurse named Emma.  She sets me up (standing, facing a chair, with one knee on the seat to relax my upper butt/hip area where the injection will go), and she always says that I’ll feel the prick and then she’ll push it slowly.  It always hurts a bit while it’s being pushed in, but it’s over so quickly that it’s no big deal.  For lupron #5, I had a new nurse, Madison.  She set me up the same way, and quickly injected the lupron.  It didn’t hurt at all…until about 10 minutes later.  Then it was sore for the next 5-7 days – think of that soreness you feel after a flu or tetanus shot in your arm.  Not a huge deal, but definitely a pain in the ass (pun intended).  J  I realized this must be the reason for Emma’s slow injection, which never hurts for more than a day afterwards.  For my 6th lupron, I had Madison again, and I asked her to push it slowly.  She did, and it was better than the prior time, but still hurt for longer than when Emma does it.  I guess it’s a work in progress, and considering I have at least 54 more of these injections over the next 4 ½ years, I assume we’ll get it down pat, or at the very least, I’ll get used to a few days of soreness.  In addition to my 5th lupron, I had my baseline labs (blood test) for the clinical trial, and then I found out about my osteopenia.  After meeting with Dr. Flaum, I met with Marissa, who is a clinical trial coordinator.  We talked through the details of the trial, including when I take the medication (2 pills per day with my first meal of the day), how I record it (daily pill diary on which I write the number of pills taken and the time), the frequency of my follow-up visits (6 and 12 weeks after starting, then every 3 months for the rest of the year), and my weekly check-ins (for the first 6 weeks of the trial, I had to send a weekly email to Dr. Flaum’s team to let them know how I’m doing on the study and if I’ve noticed any side effects).  During that appointment with Marissa, I also asked if I’ll find out whether or not I had the drug or the placebo once the year is over, and she said that I likely will not.  There’s a chance I could find out at the end of the study (10 years from now), but that’s not guaranteed.  I returned the following week, on 4/11, for a quick meeting with Marissa to ask any remaining questions and to pick up the drugs and pill diary, and I took my first pills on Friday, 4/12.  More on this later… without reading ahead, any gut feelings about whether I’m getting the drug or the placebo?

The following week, I had an appointment to see a new dermatologist, whose name is Dr. Nwe.  I made this appointment seeking help with my port scar.  My port was removed during my exchange surgery in November.  I waited until then, even though chemo was over in July, partly because Dr. Fine said he could/would do it, and that he’d probably do a better job with the scar than the interventional radiology doctors (who typically place and remove ports), since they are not trained in plastic surgery.  I was pretty pleased with the way my scar healed after the port placement, so I assumed its removal would be no big deal.  I was wrong.  Note that I also assumed the placement of the port initially wouldn’t be a big deal, since I had heard it’s typically not, and it turned out to be one of the worst parts of my treatment.  Lesson learned here – to assume makes an ass out of “u” and me.  And back to the derm… so, my port scar post removal was red, raised, painful, and itchy.  You know when something is healing and it itches in a painful way/hurts in an itchy way?  Yeah, that’s how this felt…all the time…for months.  I asked Dr. Fine and Dr. Flaum about it, and they both told me the scar had keloided (which apparently just happens sometimes, and isn’t anyone’s fault, and probably couldn’t have been prevented).  They both suggested I see a dermatologist.  For some reason, I hadn’t made a derm appointment – just kept forgetting/procrastinating, I guess.  Then when we were in Greece, it was really bothering me, and there were two ER doctors on our trip.  I asked them about it, and they said to see a dermatologist (shocking, right?), who could inject it with a steroid to help break down the keloid, hopefully resulting in a flatter, less bothersome scar.  So, after the trip, I called to make an appointment and asked if I could see the dermatologist I saw last summer when I had frostbite.  (For those of you who don’t know, after 6 years of living in Chicago, I had never found a dermatologist until that frostbite fiasco, because I loved my dermatologist in LA so much.  And since I used to go back to LA for work at least once a year, I’d see him then.  So when I needed a derm for this port scar, I assumed I’d see the one I saw last summer, since I liked her.)  Turns out her first available appointment was in August – what?!  This was the end of March!  Apparently it’s okay to wait for a bone specialist until August, but that’s not something that’s bothering me all.the.time.  I asked if I could make an appointment with the first available derm in the practice, so I got an appt 2 months later, in late May.  Then I had brunch with a friend, to whom I was bitching about this waiting process, and she suggested Dr. Nwe, who is with Northwestern, but in a different location.  I called, and he happened to have had a cancellation, and I was scheduled for April 11th!  And bonus, I really like him!  All that to say that he injected my scar with a steroid, which made it feel significantly better within a day or two.  It looked really ugly, but that got better over time too.  This injection doesn’t help with the redness of the scar, but it’s flatter, and most importantly, it feels so much better.  I had a follow-up appointment with him last week, and he injected the part of the scar that didn’t respond so well the first time.  Once again, it’s healing and feeling better.  Guess it’s a work in progress – and I’m seeing him again in late July.  I’ll probably have him do my annual mole patrol (trademark: Melody Marrero) appointment then too, since the last one was last July during my frostbite appointment.  That was the first time a derm was able to easily check for moles on my scalp… there are a few advantages to being bald {shrug} – that’s me trying to be positive.  J

I mentioned earlier that I had to touch base with Dr. Flaum every week at the start of the clinical trial.  If there’s nothing new to note, these emails could be quick, like “just checking in for SWOG 1207; all is well.”  But if I’ve noticed new side effects, or anything different since starting the drug, I’m supposed to let them know.  Around the time I started the trial drug, I noticed a tenderness/pain in my left ribs, near/under my left boob.  I really only noticed it when I was in the shower, doing my manual lymphatic drainage massage (which I do daily for lymphedema), and I didn’t think much of it.  Then a couple of weeks later, I noticed another similar pain/tenderness in my right shoulder blade.  I couldn’t think of anything I’d done differently in the way of exercise, or any injury (though I do recognize the extent of my klutziness, and it’s entirely possible that I’ve walked into walls without remembering I’ve done so…).  I noted these pains in one week’s check-in email, and Dr. Flaum told me she wasn’t worried initially, but to let her know if anything changes (for better or worse).  The next week they were both still there, and the same or slightly worse, so I included a note about it again in my trial email.  I couldn’t help but worry that these pains were signs of metastasis to my bones.  I didn’t dwell on it, but it certainly crossed my mind.  On Friday, May 10th, the day after I sent the email, I heard back from one of the nurses (who I love), Ann.  She called me to ask some questions about the pains, and then followed up with Dr. Flaum’s PA, Gina.  She then came back to me recommending a bone scan.  She said they hope for the best case situation – that the bone scan is simply a baseline look at my bones and that there isn’t any indication of metastasis.  But she also said that based on my symptoms, it would be negligent of them to not take this next step.  She transferred me to someone who scheduled my bone scan for the following Friday, May 17th.  I was traveling for work that week (side note that Chattanooga, TN feels a bit like a different country), so I was distracted and didn’t spend too much time worrying about the bone scan or the potential results until the day of the scan, at which point I was fully consumed by worry.  The scan itself wasn’t a big deal, though it is a time consuming process.  I arrived a few minutes early for my 1:00 pm appointment, and they took me around 1:15.  I received an injection of a radioactive substance that takes 2+ hours to travel to one’s bones.  By 1:30  pm, I was walking on Michigan Ave, where I stopped to return some online purchases, shop a bit, and grab a late sushi lunch while reading my book.  They told me they’d take me for the scan at 4:00 pm.  I returned early, around 3:30 pm, and they took me 5 minutes later, as a “camera” had opened up earlier than expected.  It’s funny to me that they call it a camera, since it’s a large piece of machinery that takes up a big portion of the room.  I got comfortable on the table and settled in for the next hour, staring up at the ceiling design (a sky with some tree branches and stuff… I wish it could be a movie or something more interactive).  The machine takes a variety of pictures which result in a view of the person’s complete skeleton, and they are specifically looking for any signs of “uptake” of the radioactive substance.  My understanding is that after it’s injected, it travels to the bones and gets concentrated in areas of rapid cell division, such as cancer, which then show up as dark spots in the bones.  I tried to remain positive after the scan and throughout the weekend.  I was scheduled to see Dr. Flaum on Tuesday morning, May 21st, for the clinical trial follow-up appointment, and I knew she’d have the results of the scan then.  Staying positive was difficult.  I certainly maintained hope that I would receive good news, but I couldn’t keep my brain from going to the “what ifs.”  I asked Andy to come with me to my appointment on Tuesday morning, knowing that I didn’t want to be alone if the results did show anything concerning.  The morning finally came, and it started with labs to test my blood levels, to be compared to the baseline labs from before I started the trial.  Then we waited for Dr. Flaum.  When she walked in, I quickly introduced her to Andy, and then, before even sitting down, she said “well, first off, your scan results look fine – no areas of uptake that are concerning.”  I cried.  A lot.  Tears of relief and joy.  It’s possible that it was the most relief I’ve ever felt.  A few minutes later, Andy said “well, that was the most anti-climactic exciting news ever.”  And he’s right – it was the most nonchalant delivery of news that made me feel elated (which I’ll happily take any time, btw).  This did make me think and ask why my ribs still hurt, though.  She ordered a rib/chest x-ray, which I was able to get done the same day.  Results of that looked fine – no signs of fracture or injury.  So, I guess it’s just one of those unknowns, and I hope it goes away.  I received the official write-up about my bone scan this past Monday, 5/27, and it indicates that I have areas of degenerative arthritis.  I’ll ask about that next time, but for now, I’m celebrating the line that says “IMPRESSION: No evidence of osseous metastatic disease.”  (!!!!!)

The purpose of that appointment on 5/21 was my first check-in after starting the trial.  When we were with Dr. Flaum, she mentioned a few areas of low blood counts, but everything was still in the normal range.  I asked about my cholesterol and the results of that test hadn’t come back yet.  Later that day or the next, I received an email from Gina (PA) indicating that my cholesterol levels were elevated and that I should reach out to my primary care physician.  Elevated cholesterol level is a side effect of the study drug, everolimus.  I sent an email to Dr Claybon, my PCP, and she responded saying that my cholesterol has spiked to levels that are concerning.  She said “…this would prompt me to either a) recommend stopping the study drug, or b) if you opt to strongly wish to stay on the study drug, following up with me in clinic to discuss putting you on a cholesterol lowering medication while you’re a part of the study.”  She also said “My guess is that this is drug-induced, and that you are indeed getting the actual medication and not the placebo.”  I’m supposed to talk to Gina tomorrow, but I am leaning towards stopping the study drug…I don’t think I want to add another drug for the purpose of counteracting a side effect from a drug that I don’t know is even doing anything.  On the other hand, if I stop the drug now, and my cancer does metastasize later, I’ll always wonder if it could’ve/would’ve been prevented by staying on the study drug.  Like many before it, and I’m sure many to come, this is a tough decision – stay tuned. 

It’s late, and I’m tired – time to sign off.  Thanks for reading along and staying supportive always.

Xoxo,
Mardi


 

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