Cancerversary #2

On March 8, 2017, I heard those fateful words “You have breast cancer.”  It has now been two whole years since that day and everything is so very different now.

But how to talk about that?

Am I a happier person?  Nope

Am I angry? Yep

Am I depressed/anxious?  Yep

Do I think about death more often? Yep

Do I tolerate BS?  Nope, but then I never really did before.  I AM more vocal about things I perceive as wrong.

What I am is more centered, less stressed, and more present.  I don’t see breast cancer, specifically a terminal diagnosis, as a gift or a blessing or something good, but I do see the “magic” (as my friend Emily Garnett says) in what has come out of the experience.  I’ve met some pretty amazing people that I likely would never have met.

Yet, I am also presented much more often with the death of those friends.  Many of the women who have touched my life, I’ve never met in real life.  It’s an odd shift, to be invested in relationships that occur primarily virtually.  Yet, the grief when we lose one of those women is real and it is intense. The raw, deep and intense rage I feel at organizations that take money and yet don’t truly fund the cure we desperately need has been growing over time.

I helped to organize several Secret Santa exchanges over the holidays for groups that I’m involved with.  I love Christmas and I love exchanging gifts.  When I got messages from family members that one of the participants in the gift exchanged had died and that person who was actively dying had been concerned about her Secret Santa recipient not receiving a gift, my heart broke a little more.

In one of the support groups I’m in, I participated in (and recruited my whole family) to participate in making Christmas magic for little kiddos who had lost their mom this year.  I talked to my kids about this, how important it is to care about other little boys and girls who don’t have a mommy or maybe a daddy to help them celebrate or buy gifts as my heart broke for them celebrating Christmas without me.

Sometimes I think staying away from death and illness and progressions and cancer might be good for me.  At the same time, I keep coming back to these women and these groups because the people are, on the whole, authentic.

Authentic in their pain and genuine in their celebrations.

I read a “parenting book” recently that suggested that we should not wish for our children to be happy but to wish for our children to be authentic.  Authenticity is truly rare nowadays.

So, on this 2nd cancerversary, I will celebrate authenticity and genuineness and I will be vulnerable and put my heart “out there” because there is joy and love and beauty in seeing others, in experiencing life with like-minded people.   I’ve met some amazing people and I celebrate those friendships and the magic we are creating together.

I like to say that while I treasure the friendships that have survived my transition from “normal” to terminal illness, that it took cancer to find my people.  I’ve found a group of people, that include some before cancer friends and lots of after cancer friends that lift me up and answer my middle of the night texts and are raw and honest and live life each day like we’re dying, because we are.  That’s something to celebrate.

Nameste.

Connect IV Legal Services, Inc.

Toxicity is a word that describes many things related to a cancer diagnosis.  There is toxicity from the medication we take; we are concerned about the toxicity of the substances in the world around us, in the food we eat, in the things we put on or in our body; however, in my humble opinion, there isn’t much of a spotlight on the horrendous financial toxicity that accompanies a diagnosis.

Having been a lawyer all of my professional life, I’ve personally worked with and walked through a variety of crises, I was still shocked at the far reaching effects of financial toxicity.  The sheer amount of go-fund-me accounts and wish-lists and just requests for help has been astonishing to me.  I see women going through the worst crisis of their entire lives who have to get up and go to work every single day to keep insurance, to keep a roof over their heads and it’s awful.  The herculean efforts to appear normal and put together when the toxic effects of a cancer diagnosis eats away at anything that is good is not helpful

After noticing how many women are turning to Legal Zoom or online forms or forums or legal advice from non-lawyers, I decided to intervene.  No one who knows me would be surprised how I began commenting on posts or calling and doing my own research to connect women with lawyers able to help.  There is so much that so many don’t know!  I know how blessed I’ve been that I have so many attorney friends–I’ve a pretty extensive database of people I can call on when I meet someone who needs help that I’m expanding all the time.

Connect IV Legal Services was born and officially became a 501(c)(3) on January 1, 2019.  Why?  Because there is such a need and because I want to be able to offer tax deductibility to anyone willing to help.  I’ve not encountered many who weren’t willing to help and there is such a need in the breast cancer community, but especially within the metastatic community.  The fact remains that I, as a lawyer, can often get past the gate keepers and it is also harder to say no to a fellow member of the bar rather than an individual.

If you or someone you know needs legal help, here are some general tips:

  1. Most communities have local Bar Associations.  Usually this is not the state Bar Association, but one in your local community.  Sometimes this local Bar Association is named for your town or maybe your county.  Doing a google search for your community and “Bar Association” usually turns up something.  Once connected to the proper organization, the best thing to ask for is their medically needy group.  It can take some time and effort to get connected to the right place, but most organizations have this group.
  2. If a local Bar Association is not able to help, then looking at the website for the State-wide Bar Association could be helpful.  There are usually lawyer referral services that may have a medically needy component, just not as often as local Bar Associations.
  3. Contacting your nurse navigator or patient advocate or social worker at your cancer center may net some local resources.  We lawyers are often on boards or are connected to local organizations.
  4. Local law schools often offer clinics or have alumni groups of lawyers or law students willing to help for the educational experience or nominal fees.
  5. Referral organizations like Connect IV are often in specific communities.

If all else fails, send me a message.  I’ve been able to steer many fellow metsters in the right direction and I’m always willing to make some calls and ask for help.  I can be pretty tenacious when I need to be. 😉

Dealing with Pain, Part II

As you probably guessed from my previous post, I have resisted including narcotics and other interventions that would be considered “Western” medicine in favor of including alternative/complimentary remedies.  I don’t do this lightly and, while I am not a doctor, I have become an expert on my own body and being in tune with what/how I am feeling.

However, I am not so proud to admit that something isn’t working.  Ever since January of 2017, I’ve been having pain.  It interferes with so much and while my trial and error of various complimentary remedies began to help, I realized that I needed something more.  When I had to see a new orthopedic oncologist because my original doctor left the cancer center I typically work with, she suggested I consider an ultrasound guided steroid shot.

At first, I was skeptical.  Honestly, this is how I approach just about any suggestion from a medical professional.  No, I’m not a doctor, but I’ve learned a little over the last several years of dealing with my cancer that I need to be 100% comfortable with what is being recommended.  My sweet husband can often be frustrated at how I view doctors as consultants, people who have knowledge who can advise me, but that I make the final decisions.

After some research, I agreed.

It was a bit of a surreal experience–I was awake for the entire procedure and not immobilized by anything outside of locally administered lidocaine.  Then, the radiologist utilized the same skin puncture to insert the steroids directly into that inflamed bursa in my left hip area while watching the ultrasound screen.  I got to watch it too.

One caveat about being treated at a teaching hospital, which is where my new orthopedic oncologist works. She, of course, sent me to her colleague within the same system. So, when the radiologist entered the room, there were 4 or 5 residents/fellows who followed him in.  The area for the injection is high on my left hip, so I was not clothed and was relying on strategically placed towels and a blanket to preserve my modesty. When those men (and yes, all of the residents/fellows were men–the only women in the room were me and the medical assistant) all entered and lined up on the wall to face me, it was pretty uncomfortable.  Initially, there was no attempt to introduce all of the people standing around and so, once it appeared that there was no intention to introduce them, I spoke up, stopped the activity and made sure everyone did.  I share this experience because I felt incredibly dehumanized and uncomfortable to have such little clothing/protection and being stared at by a group of men.  By speaking up, I hope I demonstrated to them that they need to treat us patients as humans and not forget basic manners.

I walked out of the procedure feeling no pain.  Let me say that again, I walked out of the procedure feeling no pain.  CRAZY!!  It felt so foreign and other aches and pains (from getting older, I’m sure) because much more obvious.  Clearly, the pain in my hip has been overshadowing everything else.

The hope is that the injection will break the pain cycle in my hip and lay the foundation for less painful movement into the future.  I’m still crossing my fingers there.  One concern from the procedure is that the radiologist mentioned he could see that one of my tendons is rubbing against one of the screws/nails stabilizing the titanium rod on that side.  The radiologist said that he could see swelling in all of my tendons (side effect of Letrozole), but that that one was particularly swollen and inflamed.  Something to note.

I’m continuing all of my other pain management strategies, but thankful for the additional remedy!

Dealing with Pain, Part I

Dealing with pain is constant trial and error.  Different pain, different body parts, and different biological mechanisms means that I am always experimenting with various remedies.  These are my favorite, in no particular order …

  1. Medical Marijuana.  Before I was in pain, I didn’t understand the big deal about medical marijuana.  I’d never tried anything remotely comparable and I didn’t understand how important it is to people in pain to be able to avoid narcotics.  The first few times I took the medication prescribed to me, the side effects weren’t manageable, especially with young children and the need to be alert and focused.  When I sought out medical marijuana and began experimenting with types and dosage, I was finally able to manage my pain and function.   I’ve done this legally, obtaining a medical marijuana card and getting my products through the dispensary.  Having both CBD and THC at my disposal to be able to manage my pain during the day (CBD) and sleep at night (THC) has literally saved my life.
  2. Physical Activity.  On the days when I feel as though I can’t get out of bed, but I do anyway because I have to take the boys to school or handle whatever is going on, I feel better.  The more I move, the better I feel.  The less I move, the more tight I am.  This has been something I’ve had to get used to.  Pain is not something I ever had to manage before.  I have to also say that I’m a big believer in mind over matter.  I’ve always been able to utilize my mental energy to push past discomfort, but that hasn’t always been possible now that I have cancer.  Yet another example of how cancer has turned my life on its head.
  3. Yoga.  I attend a chair yoga class, which is also sometimes classified as gentle yoga, three times per week.  I really notice now when I don’t go how much more stiff I am.  Gently moving and stretching has so very many physical benefits and the mindfulness/meditation practices are huge for my mental health.  I’ve always honestly been a bit skeptical about yoga and other practices that emphasize mindfulness and meditation, but I’m a believer now!
  4. Massage.  We found a masseuse that comes to our home and he is AMAZING.  As a result of my surgeries and other complications in my thighs, there are some particular muscle groups that are TIGHT.  Some of you may be familiar with the IT band–it attaches to the top of the femur and then to the knee.  I can tell that my IT band in my left leg is tightening up when I climb the stairs and have crazy pain in my knees.  In fact, I have had knee pain ever since I woke up from my leg surgery.  It is possible the pain is referred pain from the screws being so close to my knee, but I do get relief after massage, so I suspect that it is primarily muscular.  My masseuse understands anatomy and his role on my team.
  5. Heat/Ice.  I’ve not found lots of relief with applying a heating pad, but I definitely see progress with icing my hip.  I recently discovered that this is probably due to my bursa in my hip being inflamed.  This is also known as bursitis.  People who don’t have cancer and rods and screws internally holding their bones together get this too.  Fortunately icing does help, some.
  6. Salt Water.  I am thankful to live on an island on Biscayne Bay and to have access to a whirlpool bathtub.  Soaking regularly in the salt water and/or Epson salts definitely helps with that achy feeling at the end of an active day or week.  Just a note, the achiness I had before cancer is nothing compared to the aches and pains I deal with now–a side effect of most of my medication is bone and joint pain; one of them causes my tendons to swell.  All of this means, major discomfort all the time.

This regimen works for me most of the time and encompasses the major recommendations of my pain management doctor; however, when my pain wasn’t controlled with all of these relatively over the counter remedies, we had to think more creatively about what would help.  That is the subject of next week’s post.  Stay tuned!!

DISCLAIMER–I’m not a doctor.  None of my comments should be construed as medical advice or dosaging.  I’m only reporting my personal experiences, which cannot be extrapolated to anyone else’s situation.

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.

Stay

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.