Form over Substance

There are usually good reasons for doing something the same way every single time.  Protocols and procedures are extremely helpful, especially when someone’s health is on the line.  When I was practicing law, I had lots of policies and procedures, especially for new hires and the people at the front desk.   When there are employees who need to be trained with bright line rules, its much easier not to give said employees the room to think things through and adjust to the patient/client in front of them.

BUT

Now that I’m on the other side of the equation, I really do have a very different view. Some of those form over substance rules get pretty freaking irritating when it happens over and over and over.  Everyone needs to think about how they are being experienced by the person who is the patient/client from the front desk person all the way to the person/people running the show.

Here are some of my pet peeves, in no particular order:

  1. I absolutely understand that if someone is pregnant, then certain tests are not possible because of danger to the baby.  However, if I tell you that I had a complete hysterectomy in 2017 and two minutes later, you ask if I’m pregnant, it just seems like you aren’t listening.  Also, that’s in my file.
  2. If information like medications and surgeries are in the medical file, why do I get asked every single time I come in, what medication I’m taking and how many and what kind of surgeries I’ve had?  Could someone take 2 minutes and look at the file?  I have a timeline and charts of medication and treatment for new doctors, but if I’m an established patient, I don’t have the patience to go over and over the same things that are in my file. Plus sometimes going through that list is triggering and ptsd symptoms are no joke.
  3. I’m 100% on board with checking for new allergies, especially drug allergies, but if you ask “what kind of allergies do you have,” how am I supposed to know if you want to know if I’m allergic to dust mites or medication or latex?  Being precise is helpful and means I don’t have to list things that you don’t care about.
  4. I’m in pain all the time.  ALL.THE.TIME.  When I’m asked if I have any pain today and I answer, yes, I deal with pain all the time at a level 3-4 on the pain scale, a little chuckle is not the appropriate response.  I wasn’t trying to be funny by saying I’m in pain all the time.  Seriously.  I’m in PAIN all the time.  Not humorous and certainly not for someone who isn’t me to chuckle about.
  5. I had a LOT of surgeries in 2017.  Sometimes I’m at a place in my treatment and my mental health that I can joke about it.  Sometimes I can say, 2017 was a shitty year.  Because it was.  However, no medical provider gets to quip, after I’ve finished going through all the surgeries I had in 2017, that 2017 was a bad year for me.  I particularly hate the southern “well, bless your heart, honey.”  Nope. Nope. Nope.  You don’t know me, you don’t know what it was like and if I’m not joking about it, you can’t.

Again, I get that patient safety is important and that some of this information is necessary; however, I really do think that applying basic humanity to the thought process or the actual experience of handling these questions can really inform the substance.

I have started asking various support staff if they would handle the conversation the same way if they were talking to their mother.  I get a lot of weird looks, but I’m used to that.  Teaching empathy is something that I’m trying to apply to my parenting and I figure that I can do that in other places too.  Each time I’ve asked support staff this question, they stop and act far different.

Terminal cancer is not fun.  I will be in treatment for the rest of my life.  These conversations aren’t isolated, they happen all the time.  I go to the doctor’s office all the freaking time. Just a few minutes is all that’s needed to ensure that the real substance of what needs to be known is obtained rather than just ticking off a checklist.

Medical Marijuana

I am not a doctor. I am not a medical provider. None of my statements in this blog should be taken as anything other than my own conclusions and personal experiences.

Anyone who knows me knows how much of a rule follower I am.  I’ve been been this way since I was quite going and then law school simply made it worse.  Much worse.  I’ve never liked feeling out of control and I’ve never liked the idea that a substance could make me either be out of control or forget what was going on — case on point, I got drunk once by accident while studying abroad and have never done that again.

Wow, how things have changed!

In previous years, I remember seeing the advocates at the courthouse asking everyone to sign the petitions in favor of medical marijuana.  I remember seeing all of the ads and the individual pleas from patients and their families to vote for the legislation that made medical marijuana legal in Florida after years of efforts.  I remember thinking that the issues had nothing to do with me and while I did vote in favor of the legislation each time it came up for a vote, I didn’t enter into any of the advocacy efforts.

I see now how wrong that was.  Just because that issue had not affected me or someone I know directly (at that time), I didn’t help when it could have helped others.  I have some regrets that I did not help support those initiatives then.

Because now I take medical marijuana daily.

It has taken me some time to figure out how to use it, how to dose myself, and how to navigate the complexities of all the different strains and options.  This is an area where my lack of experimentation earlier in my life has meant that I am not as well versed now.  I’m making up for that!

Before anyone thinks that I’m putting my children at risk, let me clarify that I only take CBD oil during the day to manage my pain and I take THC at night to help me sleep.  CBD has no psychoactive effects, which means no “high”. This means I’m not impaired in any way during the day when I’m driving around and taking care of my children.  This is important to me, that I’m able to be present and alert when caring for them.

So, a few things I’ve learned ….

  1. Everyone responds differently–just because a certain dose or strain works for me, doesn’t mean that will work for anyone else.
  2. There is a lot of bad information out there–so many websites and articles full of information that are not vetted or checked.  Proceed at your own risk!
  3. Many medical professionals, especially oncologists, are skeptical of medical marijuana–my own medical oncologist was pretty negative about my choice to avoid narcotics for pain management, but the proof is, as they say, in the pudding. She’s now comfortable telling other patients that she’s seen it work.
  4. Many medical professionals have no idea how medical marijuana can interact with any other medication, including oncology pharmacists. Doctors, like many professionals, are risk adverse for good reason, and when they don’t know, they usually recommend against.
  5. Some medical professionals who are prescribing medical marijuana are doing so unscrupulously and are not actually helpful with regard to dosaging. This describes several doctors I saw before I found my current pain management doctor. My advice is to stay away from cannibis specific practices.
  6. The efficacy of medical marijuana can vary widely by source.
  7. The cost of medical marijuana can vary widely by source.

I’ve found an amazing community online who are experimenting carefully with using medical marijuana for the treatment of cancer and the side effects of both cancer and the treatment of cancer.  Does medical marijuana actually kill cancer?  I have no idea, but outside of a few specifics, it does not appear to be causing any harm.  Taking medical marijuana to help manage my pain, my anxiety, my depression, my ptsd, my scanxiety, and helping me to sleep through the night has been one of the best things I’ve found with the fewest side effects and unintended consequences.

I’ve stayed up on the research, I’ve consulted with medical professionals who focus on the treatment of cancer with cannibis and I’ve found a pain management doctor who prescribes and follows my use carefully. Since my pain management doctor is also a palliative care doctor, she is particularly sensitive to quality of life issues, which is important to me. So many people don’t have the luxury of the same resources I’ve found and I’m always interested in finding ways to support others, to help others find the relief I’ve found from constant chronic pain without taking opioids.

While I’m not a doctor, here are a few additional details I’ve learned in my own research and experimentation …

  1. Many pharmacists and doctors say that Ibrance and CBD are contraindicated. In my research, I have discovered that this is likely because both Ibrance and CBD are processed along the same pathway in the liver. So, in my own words, if you take Ibrance and CBD oil at the same time, it overwhelms that pathway and also interferes with the efficacy of both since the processing in the liver is part of how both are activated to their highest and best use. The remedy? Take them at least two hours apart. This way, the pathway is cleared or clear enough that it does not cause an issue or interfere with the efficacy of either.
  2. The contraindication for CBD and tamoxifen is something much less simple and there does not seem to be any way to deal with it yet. I am always sad to learn that my premenopausal friends are not yet able to access this remedy while taking tamoxifen.
  3. THC is a phytoestrogen and/or increases the level of estradiol (the bad estrogen). I don’t know enough yet to understand why or how. I have discovered that most cannibis providers believe that staying until 50 mg daily of THC is best for estrogen sensitive cancer.
  4. The delivery method makes a difference. For me, the pills take way too long to affect my pain. I prefer the oil taken sublingually (under the tongue). The oil does take some time to take effect, so I have a vape pen handy if I’ve had a bad day or am expecting to be more active. I understand that Florida had just approved the ability of people to legally smoke marijuana directly (ie not vaping). I’m not a fan but that’s just my own personal comfort level. Edibles are still not legal in Florida, which makes no sense to me but I’m hopeful that will change at some point. I am frankly a big fan of gummies infused with whatever medication desired; however, I’m also aware this method of delivery can be an issue when curious children are around.

It’s been an interesting experience to delve into this alternative world that I frankly avoided up until now. I firmly believe that natural remedies can be helpful and effective when used responsibly and I am always careful to do my research and find qualified professionals to guide me.

Tell me, what are your experiences with medical marijuana? Do you know someone who takes it?

 

ATM Mutation (Originally published in Wildfire Magazine)

If you don’t already subscribe to Wildfire Magazine, go sign up now!!  It’s amazing and you will get content from a wide variety of talented men and women. A version of this post was originally published in 2018 in the Genetics edition of Wildfire.

When I was first diagnosed with breast cancer, my breast surgeon tested for the BRCA1 and BRCA2 genetic mutations only.  When that test came back negative for both, I really thought I was in the clear and my breast cancer was just a product of cells going haywire and nothing I could pass on to my two boys, then four (4) and two (2). Wow, was I wrong.

Only a few months later, we found out that despite having clear margins in my surgery and my sentinel nodes testing negative, I had actually been Stage IV since the beginning (a/k/a de novo).  With that diagnosis, my medical oncologist decided to test for the whole panel of genetic mutations, more than 40.  I wondered briefly why my breast surgeon hadn’t done that but went along. When the results came in, I discovered that I was positive for the ATM mutation.  After the inevitable jokes about getting money from the ATM, we settled down to research and share the information with the family.

As my family has gotten tested, we discovered that the ATM mutation came from my mother’s side (she is a breast cancer survivor and was tested over 15 years ago for BRCA only, which was negative).  I’m the eldest of six (6) children and I’ve cousins and aunts and uncles—there are a lot of us to test and not everyone is super excited to find out.  Understandable.

The ATM mutation is presently linked to a moderate risk of breast cancer (tell that to the crazy cancer cells that decided to mutate and spread everywhere in my body), a low risk of pancreatic cancer (1% more than the general population) and, most recently, a risk for prostate and ovarian cancer, which is still not quantified.  There’s actually more prostate cancer than breast cancer on my mom’s side of the family, which is why we weren’t surprised when the new guidelines came out with prostate included in 2018.  The other interesting phenomenon is that the cancer appears to be getting more aggressive with each generation.

When I first researched the ATM mutation, I was surprised to discover how little there is available to read.  The genetic counselor my husband and I met with verified that it is a relatively newly discovered mutation and there isn’t much available about it yet.  My sister’s genetic counselor referred to it as an “up and coming” gene.  That language is rather astonishing and we’ve joked about being more trendy than we realized – yes, humor is a good coping mechanism, even a bit of dark humor.

One note about genetic counselors — at last count, amongst the many members of my family scattered about the country, we’ve encountered, as a family, no less than ten (10) genetic counselors. The variety among the advice we’ve all received has been astonishing. There does seem to be some differences based on geography and whether the counselors are in an academic institution; however, it is important to note that this piece of our families’ journey is as much about art as it is about science.

Despite the fact that men can get breast cancer, it is currently believed that if I pass along this mutation to my boys, they won’t have a higher risk of breast cancer; however, they would need to be screened earlier for prostate cancer.  I am thankful that the testing for prostate cancer is much more precise than for breast cancer and that treatment is typically very effective.  You see, this experience with breast cancer and genetic issues has caused me to be thankful for the oddest things.  Yet, there it is.  I AM thankful that my children will be better protected than I was.

It is hard to describe my feelings about the possibility of passing along genes to my children that could kill them.  My husband and I struggled with infertility and I had to go through a lot of needles and tests and treatments to get pregnant both times.  I struggled with maintaining breastfeeding with my eldest while we were getting pregnant with our second son because of all the medication I had to take to get pregnant.  Our children were and are wanted and deeply precious to both my husband and I.

Knowing that I may give them something so deeply embedded in their DNA that is akin to a ticking bomb terrifies me.  Plus, it is unethical for children to undergo genetic testing for something that is an adult issue.  As a parent, I have struggled with this because I want to KNOW if I’ve passed something on to them.  I want to be able to tell them that they don’t have to worry if they test negative. I want to be able to remove that worry from my list of things that I stress about daily.

But, we can’t.

Since my children are so young, discussing how I got cancer or why or any of those deeper discussions are simply not appropriate yet.  They don’t understand anything beyond basic principles and we are careful how much we share with them.  Sadly, with the life expectancy I face, I will probably never be able to have those discussions with them.

The best I can do is to focus on gathering information for them and leave them the information that they need in order to be empowered at the right time.  Like the BRCA gene, so much more will be discovered, maybe not within my lifetime, but certainly within theirs.  Knowledge truly is power and with screening and early detection, this risk may not end their lives well before a “normal” or “natural” life expectancy as it will mine. If my grandchildren include girls, they may not be so lucky.

I am thankful that I have information that will help me prepare my children and I certainly do not wish that I’d never brought them into the world; however, I regret that I’ve given them something that may cause them pain.  As a parent, I desire only love and good things for my boys.  I am hopeful that they will use the information I will leave for them wisely.

A quick note for anyone at the beginning of their breast cancer treatment/diagnosis — even if it isn’t offered, ASK for the full panel. You need to know more than just BRCA1 or BRCA2. Get the entire panel done at the beginning. I wish I had.

Feeling Fragile

Most days, I have sufficient energy to keep up with the boys, to attend my doctor’s appointments and to do the things that need to get done, to do the laundry and organize homework. Most days. I’m not at my former level of energy, but with judicious rest and a LOT of help, including the pharmaceutical and natural kinds, what needs to get done each day, gets done. Adjusting my expectations to what I can actually do without having to recover in bed for a day or two is something that is still an ongoing project. There are days that I forget where we are and why. Other days, it’s all I think about.

It’s hard to describe how odd it feels to get used to a routine, a “normal” that isn’t really all that normal. I’m thankful that my boys don’t seem to remember much about what our lives looked like before my diagnosis. They aren’t comparing, they just want their mama. Or “mom” as my youngest is now calling me.

I compare.

I compare myself now to myself before. Some days the former seems better, some days the latter.

Recently, after a pretty amazing Spring Break with my kiddos and some of my siblings and nieces, we came home. While Elliot and I were unpacking, I fell down. I’ve fallen a few times in my adult life (once while pregnant) and before cancer, I’d just gotten up and back into the routine of my day. This time, it was entirely different.

I was scared. Really freaking scared.

I scraped and banged up my left ankle and jarred my left knee. My left leg is generally and overall a complete mess. The amount of pain I was feeling made me think that perhaps I’d broken something or at least pulled or stretched something. After the fall, I called my doctor’s office and they told me to come, no need for an appointment.

This is who I am now. The person who calls her doctor and they say come now. The person who falls down at the age of 40 and actually thinks that a bone might have cracked because of the amount of pain said fall creates.

WHAT?!?

Part of my brain was halfway convinced that there was a mistake, that I should just ignore the pain and swelling and bruising. The rest of my brain knew that it was serious enough to call the doctor.

So, we went. Since it was still Spring Break, I showed up with both boys in tow until Elliot could join us. The nurses and doctors joked that I’d brought the whole team to help. Neither of the boys are freaked out by doctors or hospitals any longer since they come with me at times and they know I go regularly. A silver lining, maybe?

After an examination and xrays to be sure, my doctors told me that I had not broken anything (thank God) but that I had sprained ligaments in both my left knee and my left ankle. Since ligaments don’t have blood supply like muscles, they heal much slower. Since my tendons are already swollen all the time, thanks to the Letrozole I take daily to suppress any remaining estrogen in my body, I have more than the usual inflammation in my joints all the time.

The remedy–RICE. RICE stands for Rest Ice Compression and Elevation. Likely, for months.

MONTHS

Ligaments apparently heal very very very very slowly.

The good thing is that only specific movements tend to cause pain. Walking is actually not so bad, it’s stairs or sideways movements that cause me to see stars, to consider blacking out or throwing up. So very thankful for the chair lifts in our three story condo that, while moving a bit slowly, allow me to avoid walking up or down the flights of stairs at home.

This is my life now. I fall down and face adjustments to my daily routine for months.

I’ve been that fragile for probably years now.

Yet, the feeling of fragility hitting me squarely in the face is disconcerting. No, that’s not big enough, it’s overwhelming. Actually, it’s freaking awful. It’s a slap in the face and an unexpected bucket of water upended over my head. No one likes to have their mortality, their fragility to smack them in the face or their left leg, to be more precise.

Don’t mind me, just resting, icing, elevating and compressing my left leg today and feeling fragile.

Surgical Menopause

While I have no regrets that I gave the green light for my hysterectomy back on September 18, 2017, the ongoing effects of the removal of my ovaries have caused a great deal of consternation.  I had some frame of reference for what menopause would look like, but no good resources on how surgical menopause is different from gradually experiencing the diminishing levels of estrogen.  I wish I knew then what I know now not because I would have made a different decision, but I wish I’d had a better plan in place or was ready to put a plan in place.

The symptoms of menopause, surgical or otherwise, that I’ve been dealing with, in no particular order, are …

  1. Hot Flashes.  This is a big one.  I don’t usually drip with sweat, although I’ve seen others deal with that; for me, the hot flashes usually feel like I’m getting a fever over and over and over again.  It feels so weird that I actually had no idea what I was experiencing at first.  I take medication that mostly controls the hot flashes during the day, but I still get them at night and if I’m stressed and so I constantly wear layers to take of and put on and then take off and put on … and so on throughout the day.
  2. Internal thermostat confusion.  I’ve never been so irritated that people in Florida keep their A/C set on frigid when it’s boiling hot outside. This means that the temperature differential is gigantic.  GIGANTIC.  Since my internal thermostat is in a perpetual state of confusion, I’m hot outside and then I go inside and get the weirdest combination of being hot and freezing at the same time.
  3. Dryness … everywhere.  It’s not PC to talk about vaginal symptoms, but when you hear the words “vaginal atrophy,” things start to get real quickly.  Basically, without estrogen, the lining of the vagina gets very dry and thin, prone to bleeding and pain when stretched.  This, in a word, sucks.  It’s awful.  No one said anything about vaginal atrophy and it’s the WORST.  Plus, there’s basically no real treatment for it without taking estrogen, which I can’t take.  The most effective treatment for vaginal atrophy without hormones that I’m aware of is laser therapy.  There are a variety of lasers on the market, none of which are approved by the FDA yet.  I personally had the Mona Lisa Touch treatment, which was 100% out of pocket.  It has helped, some. Also, now I use hydroponic acid (yes, I know that sounds awful) and that is also helpful, some.
  4. Bones.  As many of you already know, I have mets throughout my bones.  A lovely side effect of not having estrogen is bone health is affected.  To combat the weakness in my bones due to the dead and dying lesions/tumors and the bone health atrophy due to surgical menopause, I get a monthly injection called Zometa.  Now my bones are strong, but there are also lots of side effects to taking Zometa long term, including osteonecrosis of the jaw (ONJ), which is basically when the jaw bone dies. I’ve heard that this can be related to current or previous cavities or root canals, neither of which I’ve had, but having a good dentist is key.
  5. Heart.  Not only is your heart health impacted by chemo, menopause can also exacerbate heart disease.  Heart disease is a big issue for women and women in menopause even more so.
  6. Muscle Mass.  Going into menopause gradually means that you loose muscle mass gradually.  Going into menopause abruptly via surgery and then suppressing all of the estrogen left means that your muscle mass is affected abruptly.  I’ve never been much of a fan of working out or building muscle, but now I have to focus not just on cardio, but also on building muscle.  Jeez, I didn’t need yet another reason to have to exercise …
  7. Mood Swings.  I probably shouldn’t say much here since I’m not always aware of my mood swings; however, let me say that I feel less in control of my emotions since my hysterectomy.  Of course, since that happened in close proximity to learning that I have a terminal diagnosis, sometimes it’s hard to differentiate where something has come from; however, it’s harder to stay in control and I definitely have more moods.  If you want more information on this, you might have to talk to my husband.

I’m sure there are other things; however, one other symptom of menopause and chemo is that my brain doesn’t work as well.  I don’t remember as much as I did and my executive functioning has been affected negatively.  Menopause creates extra struggles and extra issues; however, I am still happy that we acted swiftly to deprive my cancer of its fuel.

Bottom line, if you have a woman in your life who is experiencing menopause or surgical menopause, give her some space, give her a hug, and don’t expect her to be the same. We all need some extra TLC and empathy.

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.