Pain

This picture is theoretically what my bones look like now–the tumors have been killed off or are dying, but what is left are literally holes in what should be solid.  I’m hopeful that the medication I take daily has helped, but breast cancer eats bone.  It eats it.

Before I found out that I have metastasis from my breast cancer in my bones, I thought I knew what pain was.  After all, I went through fertility treatments, extremely painful periods/cycles, I’ve had two c-sections and I labored for about 26 hours (including more than 4 hours of back labor) with my second son.  There have been no stitches or broken bones in my youth, but I did think that I understood pain.

Nope.

I had no idea what pain really was until I had surgery to pin my femurs; this means that I have titanium rods inside each femur, each secured by 4 titanium screws.  I have never known pain until I woke up with my legs throbbing and a Dilauded drip to take the edge off.  It didn’t do much and I was incredibly nauseous.

Then, my crazy body decided to start forming bone inside my thigh muscles–a/k/a heteotopic ossifications (HO).  HO is most often seen in teenage boys who have experienced trauma to their muscles as a result of playing football or some other contact sport.   I have an infusion once per month to keep my bones strong (Zometa), so it is difficult to understand how my bones have resisted efforts to fill in the holes left by dead and dying cancer cells, but form bone inside my muscles.  SMH.

I had no idea what pain was until every movement meant excruciating lightening like pain in my hips.  I had no idea what pain was until I couldn’t move quickly to protect my children from, for example, running into the street.  I had no idea what pain was until I woke up in pain after accidentally rolling on my side.  I had no idea was pain was until I was diagnosed with cancer.

Pain is overwhelming, it is awful, it is mind-numbing, it feels like drowning.  I can’t think of a perfect metaphor and I wish I didn’t have to.  Pain brings you to a point where you might just do anything to make it stop.  Anything.  No one outside your body could possibly know what pain does to a person. How you don’t feel like a person any longer, but you just feel pain.  With childbirth, the pain ebbed and flowed and there was an end point; there is no ebb, just flow, and there is no end point with pain from cancer.

So, what to do about this pain?  I’ve found some tricks and I do manage my pain better with nearly two years of experience under my belt.  How?  You’ll have to tune in on Thursday and next week for that information.

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Treating Cognitive Issues

Once my neuro-psychological testing revealed a 20 point IQ drop, the next step was to discuss treatment.  The areas identified as deficient have to do with recall, processing speed and executive functioning; exactly the areas I’d reported issues with.  I was referred to a speech therapist.

A speech therapist?

I was surprised since my perception of speech therapists is that they, well, work with speech issues.  Turns out, speech therapists are so much more than I’d understood.

In addition to the exercises I completed in person with the speech therapist, I was told to download and start utilizing the at home exercises in the application for my phone called “Brain HQ.”  I’d heard of Luminosity, which is similar to Brain HQ.  My PhD neurologist explained that while Luminosity is not research based, Brain HQ is.

The games/exercises I completed in person and on the ap didn’t feel like they were exercising my brain, but they were.  My speech therapist followed my progress in the application and after only 4 sessions in person, I was released in light of the progress I’d been showing.

Next step, repeat the neuro-psychological testing to see if the progress I’d noted was sticking.

It did.

I re-did the testing in the first few weeks of the new year and received my results from the neurologist just recently.  I’ve markedly improved on all the areas of focus.  In fact, I’ve regained all but 5 of those missing IQ points.  Doesn’t mean that I’m back to “normal” for me, though.  I still search for words and there are still those moments when I just can’t follow a conversation.

BUT

The improvements I’ve seen clearly demonstrate that if you exercise your brain, it gets better!!  Hope for the most infuriating aspects of the aftermath of chemo is available and within reach.

Now download the application and set your daily, weekly, monthly goals.  It’s worth it!

Neuro-Psychological Testing

2017 is a bit of a blur for me.  There are some moments that stick out; however, not many.   It was the most eventful year, medically, for me and the addition of chemo to all the surgeries and hospital stays and procedures, its no wonder that it feels hazy and not quite real.  Since there were so many medical issues going on and I was adjusting to so many different side effects, I didn’t say much about the issues going on inside my head. Now that I’m hitting my stride a bit more, I started noticing cognitive issues and finally brought it up to my team.

First of all, I find myself grasping for everyday words.  For anyone who knows me, this has got to be one of the most difficult to adjust to.  I’ve been a litigator all of my professional life, speaking publicly and advocating with words all day long, every day.  To then be searching for simple words to describe something to my children has been a huge humbling adjustment.  It’s never the SAT words I have to reach for, it’s the every day words, like plate or car or tree.  My kids think this is hilarious and I’ve turned the frustration into something of a Socratic method type question and answer time.  It’s still annoying to me, but if I don’t focus on the stress or frustration, it helps.

Secondly, I am literally unable to multi-task.  I used to be able to do many things at once; juggling lots of balls in the air and complete each with pretty good accuracy.  I had to be able to do this to manage all of the things in my life.  Now, if I don’t focus on one, maybe two, I get nothing right.  I once booked a plane ticket for the wrong day and showed up 12 hours late to the plane flight.  Yep, it sucks and having to remind myself to slow down is an ongoing issue for me.

Third, I forget things.  Literally forget the smallest things.  I read a book or part of a book and I have to go back and re-read or re-watch nearly the whole thing.  It’s frustrating and I’m down to only about a half a book a day rather than a whole book.  Yeah, yeah, I’m complaining about something weird, but its frustrating and makes me not feel like myself.  I can’t boast a photographic memory or anything, but I’m an auditory learner primarily and have always had a very good memory for conversations.  Now, I don’t.

When I was finally referred for neuro-psychological testing, I wasn’t quite sure what the results would show.  I was floored when the results demonstrated that I’ve been dealing with a 20 point IQ drop.

Um, what?

I’d heard of Chemo Brain and that while patients complain of the cognitive affects of chemo, doctors haven’t been sure it is really a result of chemo.  I’m not going to put all of the blame on chemo, but that certainly didn’t help.  All of the medication I’ve been on since I completed the summer of 2017 also has ongoing cognitive side effects.  Having a hysterectomy and the ongoing suppression of any remaining stray estrogen in my body also doesn’t help.

My next question was whether there was treatment that could help me recover the missing IQ points (20 does seem like a lot) and the answer I was given was yes, there is treatment. Stay tuned next week for the treatment I’ve completed.

Chemo Brain

This is a real thing.  I’ve read several times that doctors are not convinced that it exists and that it is hard to test.  Nearly everyone I’ve talked to who has undergone chemo experiences various cognitive affects.  It is hard to quantify at times, but it is a real thing.

A rather humorous example that happened to me not too long ago …

I arrived early to a doctor’s appointment and sat in the car for a bit beforehand since the AC inside the office is always set awfully low.  When I got out of the car and pressed the button to lock the doors, I thought it was odd that the horn didn’t beep.  I unlocked and re-locked the car, checking each time that the door locked or unlocked as expected.  When it appeared to work, I went inside. After my appointment, I walked out to my car and realized that it was still running.  Since my car has keyless entry, I was able to take my key inside my appointment, leaving my car running the entire time.

So, glad to know that my car wasn’t stolen, but this was a good example of how chemo affects your reasoning ability.  Any time under stress or a situation that causes heightened awareness, lowers my ability to think clearly or well.

Chemo brain is a real thing and it can have such far reaching effects in the long run.  My best solution has been to slow down, to take notes more often, and to give everyone around me the freedom to remind me repeatedly.  I forget a lot and have to rely on those around me to keep me on my toes.

Compromised Immunity

I have understood for some time that I have a compromised immune system.  It’s hard to ignore when I go to the doctor’s office at least monthly to have bloodwork done and the lab always calls my doctor’s office right away to report the feeble amounts of white blood cells detected.  Learning the medical terms and becoming well versed in the complicated way my own body reacts to the toxicity of the medication that I take every day has become a whole other learning experience.

I’ve always had a strong immune system or maybe I’ve just deluded myself into thinking that.  I would get the colds or flu “going around” especially now that I have kiddos, but I would typically be the last one to get sick and usually it would last the least amount of time.  My husband would chide me regularly for the fact that I didn’t have a primary care physician.  I never missed my yearly well woman visits and would go to urgent care if there was a serious issue, for instance, when I had walking pneumonia or when I had mono.

Now that my immune system is compromised, I still don’t get colds or ordinary stuff, I get weird stuff.  Like the two strains of E.Coli my GI doctor recently discovered.  One was no big deal, but the other one is aggressive and called for immediate treatment; however, the treatment could cause my tendons to rupture and since I take medication that makes my tendons swell, this is a real issue.  I had no idea that antibiotics have a risk of tendon rupture.  I did stop reading all the inserts that come with the medication because it’s terrifying.

My neurologist also discovered that not only do I have a strep infection hanging around in my nasal passages, I also have MARCONS, which is similar to MRSA and is highly antibiotic resistant.  Google and I have a complicated relationship–while I appreciate all the information at my fingertips, I also scare myself regularly.

I do my best to be a compliant patient and I work hard to follow the doctor’s instructions and stay consistent with my medication.  When the boys are sick, though, they need their mamma and if that means I end up having to take more medication, then so be it.  Priorities, you see, are still important, even if you have a terminal illness and are immunocompromised.

From September 26, 2018

What now?!?

Journal entry by Abigail Johnston — 

I started seeing a new neurologist and he’s working to get to the bottom of my recurring and debilitating migraines. He’s a specialist and I appreciate his thoroughness and attention to details. He reviewed all of my medical records with me and asked me questions no other doctor did. I’m hopeful for good results. The medication he gave me to use during and to prevent my migraines seems to be helping.

One of the tests he ordered was a thyroid ultrasound as he thinks that my ongoing hormonal fluctuations might be related to a thyroid or perhaps a pituitary issue. The ultrasound showed a growth on my thyroid. Not sure what it is yet, but there’s another thing to obsess over.

After getting another X-ray of my pelvis and seeing the orthopedic oncologist, it appears that the heterotopic ossifications in my thighs may have stopped growing. That’s at least what the X-ray showed. Unfortunately the same areas are lighting up even more on the PET scan. This leads my doctor to speculate that there are tumor cells growing/organizing in that area. Tumors/lesions in a muscle are substantially less dangerous than in bones or organs but it’s still so worrisome that there are any at all. Not sure yet but it’s something to watch.

Each time I think that things have settled down or I can find comfort in the new medical issues, there’s something new.

The month of October/Pinktober/Stinktober is coming. This will be the second season of peptobismal pink advertising and misleading the public I’ve had to endure since I was diagnosed. It is easiest to focus on education and making sure to ask everyone to make good choices about where funds go. I can’t ignore the bone deep anger I feel at those companies making money off of “awareness” and “prevention.” I’m enraged even more this year than I was last year. So much money that could go to life saving research goes to line the pockets of the wealthy. The lies perpetuated by so many is so very sickening.

Elliot and I will head to DC for the stampede and Die in. I am hopeful it will feel productive and give me a focus to build on. I’m such a do-er. I need focus and a goal bigger than myself to feel productive.

From August 22, 2018

A rough and overwhelming week

Journal entry by Abigail Johnston — 

Liam started kindergarten this week and it was amazing and nostalgic and fun and I had a hard time focusing. So many other things going on but I’m still doing my best to stay focused on the present and supporting him through this new transition. We love love love his new school and I’m working on getting involved and not getting TOO involved.

Anyway, the biggest fiasco this week was finding out my insurance company denied the PET scan scheduled for Friday. I HATE INSURANCE COMPANIES. With my tumor markers coming up since January, it’s so important to know what’s going on and the PET scan is the gold standard (according to my medical oncologist). I found out in a weird way since the patient seems to always be the last to know important stuff. As soon as I did find out, I got on the phone. Fast forward to this afternoon and I learned that my PET scan got approved!! After a few hours on the phone and dealing with 22 different people, I got the insurance company to do a separate peer to peer with my medical oncologist when I found out the first one was a family medicine doctor 5 years out of school (she was the one responsible for the denial). My medical oncologist is a 30 year specialist in breast cancer. Clearly not her peer. My doctor said it’s the first time that’s ever happened in 30 years, that the insurance company reversed their decision. I also might have read my entire health insurance policy and pointed out at least 10 violations and made sure they knew I’m a lawyer. A great outcome but the cost in time and energy is incalculable. I need to live my life and spend time with my kids, not fight with insurance companies. I HATE INSURANCE COMPANIES. I’m not sure I’ve been this furious since I started treatment. The gall of them. Anyway, hopefully they got the message this time and the next PET won’t be such a fight.

In other news, my neuropsychological evaluation demonstrated that I’m operating at a 20 Point IQ deficit due to the affects on my brain from chemo. That’s quite an impact. Good news is that I qualify for cognitive therapy. I have an evaluation next week and I expect to be in treatment for several months. The outcomes they are seeing from this therapy, basically targeted brain games, is promising. The neurologist thinks that I could recover most if not all of the deficit.

Finally, I’ve been having some crazy intense migraines. Days and days of excruciating pain and nausea that the medication doesn’t touch. I’ve always had migraines but nothing that worked in the past has been helping. The PET will help to know whether I’m dealing with mets to my brain (rather rare). I also will see a neurologist who specializes in migraines the first week of September. He doesn’t take insurance and his appointments are 4 hours long. I’m hopeful that adding his input will help.

So, there you have it. A difficult several weeks and why I can’t seem to get much done nowadays besides getting to doctors and driving the boys to school.