Friday, December 7, 2018

My 60th Year...what a doozy.

     Today is my birthday.  I am 60 years old and am delighted to be alive.  Really. Since I started blogging in 2012, I've been able to get to a happy place about my birthday.  I've been grateful about living, surrounded by my incredible posse of family and friends.  This birthday feels different because, without a doubt, this past year been the most acutely challenging year of my life.  All three parts of that "triad" I often refer to, (my mind, body, and spirit), were beaten up...beyond recognition.  

      Since my diagnosis, my health challenge has been my cancer. This past year, however, my life has been consumed with recovering from an elective hip replacement, and every conceivable complication possible, including a femur fracture, crazy infection, blood clots and internal bleeding.  It has now been 8 months since the last of three surgeries I had in 2018, and despite my total commitment to rehab, it has only been about a month since I've been able to walk without a cane.  

     Everyone's heard that old the proverb, "with age, comes wisdom", and during this past year I've aged, and had the opportunity to grasp a few of those pearls. I'm writing them down to share with my children, Nathan and Nina.   

     #1.  Shit happens...despite good planning.  I did my due diligence and scheduled surgery with the best orthopedic surgeon I could find. Shit still happened. 

     #2.  Weakness begets weakness.  Very soon after my femur broke and well into my rehab, I experienced indescribable fatigue, loss of muscle mass, and dwindling mental fortitude. The weaker I got, the weaker I got.  
     #3.  Strength begets strength. Rebuilding one's body takes a long time and requires the patience that often escapes me.  Somewhere along the rehab road I realized that I had less pain and more strength.  And then there were/are days when I only have pain because I've pushed myself too hard in workouts; a hazard of impatience.  But the pearl of wisdom I hold onto the hardest is that the stronger I get, the stronger I can get.  Strength builds upon itself.   

     #4.  When maintained, our bodies are amazing machines. I thought for sure that my body wouldn't be able to recover from my hip replacement/femur fracture fiasco and fight cancer.  I was wrong. 

     #5.  In a strong family, life doesn't happen in a vacuum.  A few days ago I told Wynn that 2018 has been the worst year of my life. He responded, "Mine, too." 

     So for this birthday, I'm going to do my best to look forward to my 61st birthday and hopefully by then, I'll be able to get back to that, more celebratory, place.  In the mean time, wish me luck!


     In celebration of living with stage 4 lung cancer for 6 years now, I am raising funds for further lung cancer research - the kind of research that is keeping me alive.  If you can, please consider making a donation that will advance research in ROS1-mutation driven lung cancers - a rare cause of the #1 cancer killer.  Here's a link:


...and THANK YOU!

Thursday, November 8, 2018

Change is Good

Remember this?

Palatine police arrest Dr. Wynn Sheade as he and about 400 others protested Saturday outside the Palatine Township Republican Organization office in Palatine while U.S. Rep. Peter Roskam was inside talking to organization members.
Daily Herald, February 5, 2017.  Courtesy of Sanford Morganstein

     In early 2017, I blogged about my husband getting arrested while trying to attend a meeting with our Congressman, Peter Roskam - who was in our town to discuss healthcare and the Affordable Care Act.

Get this...

"Democrat Sean Casten declares victory over U.S. Rep. Peter Roskam in pivotal 6th Congressional District"
Chicago Tribune, November 6, 2018, 10:55 PM 
     Wynn and I worked hard to defeat Roskam. We attended candidate forums and "meet and greets".  We put our money where our mouths were.  We both phone banked for the Casten campaign and Wynn canvassed nearly every weekend in the months preceding election day.  Roskam voted 60 times against protections for Americans with pre-existing conditions - and we needed him out.    



Tuesday, October 30, 2018

VOTE, Like Your Life Depends On It...

    ...because it does. 

Tuesday, November 6th is Election Day 

     For me, I'm voting for IL-6th District Congressional candidate, Sean Casten.  He's a new comer to politics - he's never held an elected position before.  He's a scientist and clean energy entrepreneur, which speaks to my passion to protect our environment for generations to come. But more urgently for me and for all cancer patients, Sean Casten supports protecting the pre-existing conditions clause in the Affordable Care Act, (ACA).  If insurance companies are allowed to drop members with pre-existing conditions, I will die.  No drama here, I mean it.  My medication costs $15,000/ month and if I lose my health insurance because I have cancer, I won't be able to afford my lifesaving oral chemotherapy on my own.

     Casten's opponent is our incumbent Congressman, Peter Roskam.  He's voted 60 times to allow insurance companies to drop members with pre-existing conditions.

     Take a quick glance at this list of pre-existing conditions under the GOP health plan proposed last year.  It was published by Business Insider in an article by Lydia Ramsey on May 5, 2017.  With the conditions listed here, the Kaiser Family Foundation estimates that 27% of Americans under age 65 years could become ineligible to get health insurance.

Alcohol/drug abuse with recent treatment
Severe mental disorders such as bipolar disorder or an eating disorder
Multiple sclerosis
Rheumatoid arthritis
Fibromyalgia and other inflammatory joint disease
Muscular dystrophy
Severe obesity
Cerebral palsy
Organ transplant
Congestive heart failure
Coronary artery/heart disease
Bypass surgery
Crohn's disease/ulcerative colitis
Parkinson's disease
Chronic obstructive pulmonary disease/emphysema
Pending surgery or hospitalization
Diabetes mellitus
Pneumocystis pneumonia
Pregnancy or expectant parent
Sleep apnea
Hepatitis C
Kidney disease
Renal failure

     Below is a list of other conditions that could make it harder, (more expensive), to purchase a health insurance plan, according to the Kaiser Family Foundation.

Basal cell skin cancer 
(a type of skin cancer that doesn't tend to spread)
Ear infections
High cholesterol
Joint injuries
Kidney stones
Menstrual irregularities
Migraine headaches
Being overweight
Restless leg syndrome
Urinary tract infections
Varicose veins

     The above lists are exhaustive.  (They left off hangnails.) EVERYONE at some point in life will have at least one of the above conditions, and if not you, someone you love will.

     Please VOTE for Congressional and Senatorial candidates that will ensure health care for all Americans and protecting those of us with pre-existing conditions. 

Find out what District you're in and who your Congressman is:

Find out who your Senator is:

Do your homework to learn about the candidates and  


     Other Illinois Congressional Candidates in my area that support protecting the pre-existing conditions clause in the ACA:
Image result for Raja Krishnamoorthi for congress logo
Raja Krishnamoorthi is the incumbent for IL-8th District.  He has a consistent record for protecting Americans with pre-existing conditions.

Image result for lauren underwood for congress logo
 Lauren Underwood is the candidate running against incumbent, Randy Hultgren, in the IL-14th District race.  Hultgren votes against pre-existing condition protections.  Underwood, a registered nurse with a pre-existing heart condition, shares my fears of losing health insurance. 

Saturday, October 20, 2018

Update: Summer Setback, Fall Recovery

     This update is definitely overdue.  Thank you to friends who have contacted me to see how I am doing because I haven't posted a blog in a while.  

     I'm much better now.  July was another rough month.  Back in April I had a deep vein thrombosis, (DVT), and pulmonary emboli (PE) - following my series of surgeries and subsequent inactivity.  Anticoagulant therapy is standard following such clotting events. While still in the hospital, I was on a continuous heparin IV for a few days and went home on an injectable form of heparin called Lovenox.  Lovenox is no fun...either Wynn or I had to give me a shot in my lower abdomen, twice a day.  Being on multiple medications can be problematic and I started getting large hematomas at the sites where I got injections.  They were numerous and painful.  My hematologist, (who is also my oncologist), checked into alternative anticoagulants.  My choices were limited because I was on several medications that have adverse interactions with the alternatives.  We settled on an old, stand-by medication called Coumadin, which can be tricky.  The actions of Coumadin are influenced by dietary Vitamin K - which is in many foods that I eat, (ie. green leafy veggies, cabbage, brussels sprouts, etc.).  I was told to eat my usual diet and come in for blood testing a couple times per week and the Coumadin dosing would be adjusted to keep it at a therapeutic level. After a few weeks of adjustments, the sweet spot was found and blood monitoring became far less frequent.

     I was good, for about a month.  Then in mid-July I had internal bleeding causing my hemoglobin level to fall to 6 g/dL, requiring a few units of blood and a 5-day stay in the hospital...4 in the ICU. Coumadin was discontinued the day I was admitted, followed by an upper endoscopy, colonoscopy, and flexible sigmoidoscopy.  No source of bleeding was determined...but thankfully, the bleeding stopped.  The GI specialist recommended not doing anything, for now, unless I have another bleeding event.  

      The next question was whether or not to restart the anticoagulant.  The opinion of two oncologist/hematologists was to stop the anticoagulant because despite knowing that cancer patients have an increased risk of clots, for the 5+ years prior to my hip surgeries, I’d never had one.  They felt that my clotting event was far more likely to be related to my surgeries and inactivity than my cancer.  On the other hand, the GI specialist thought that I should go back on an anticoagulant because a GI bleed is more survivable than a pulmonary emboli. (I really hate it when my doctors have differing opinions.  I go to the doctors I go to because I trust each of them.)

      With trepidation, I stopped the anticoagulant.  Making the assumption that my clots were associated with my surgeries, the standard duration for anticoagulant therapy is 12 weeks.  I took them for 11 weeks before my bleed, so the two oncologist/hematologists felt that that was "close enough."  (If thought to be associated with my cancer, I would be on an anticoagulant for the rest of my life.)  However, I was, and am, nervous of getting another PE.  So...I bought an Apple Watch.  Prior to discovering my PE in the hospital the first thing I noticed before becoming short of breath was my rising resting heart rate.  Now I can check my resting heart rate everyday and make a mental note.  Maybe I can catch another PE early, before becoming symptomatic or dying suddenly. 

     Physical therapy has been vital to my recovery.  In the beginning, I went 3 times per week.  When I returned to work I scaled back to 2 times a week.  I, however, did the exercises the PT instructed me to do everyday.  Earlier this month I was discharged, after five months.  Although I was still walking with a limp, my PT and PT Assistant felt I had all the mechanics for a successful recovery, and that I just needed to get stronger.  I continue to workout on a daily basis, and I'm happy to report that my limp is definitely becoming less pronounced.  

     After going through three surgeries, joint infection, DVT and PE and spending a month in the hospital, I was very worried that my body would not be able to continue to fend off my cancer.  My last brain MRI and CT scans were in July.  I'm so relieved to report that all imaging and blood work indicate that my cancer continues to be stable on Xalkori.  My next series of MRI and scans are coming up in November.  

     Thanks again, everyone, for continuing to reach out to make sure I'm OK.    

Recent visits with friends and my brother-in-law:

     This past summer, we enjoyed a nice dinner with Laurie and her son, Jaime, who is working in Chicago until the mid-term elections.  


                  Stephanie came to visit twice this year!  Along with Laurie, we all met in grad school...37 years ago.

     Although we missed my sister-in-law, Tracey, on this trip, my brother-in-law, Bruce, met us in VT to enjoy the Fall colors.  If you haven't been to VT in the Fall, put it on your bucket list.  Burlington is a city with a great vibe!

     With other lung cancer ninjas at the Lungevity Hope Summit in Chicago, 2018.

       Kerry and I have been friends since junior high.  While on a road trip to the East Coast, he stopped by for a visit and joined us to see Nathan's comedy showcase. 

     Enjoyed an afternoon with Bill and Gwen...friends from my college days.  


      Dear family friend, Sumi, made a stop in Chicago on her way to Omaha and her 55th high school reunion.  Go Eagles!


     Family and friends...old and new...continue to make my very complicated life so do-able.  I couldn't be more grateful for their support.

Friday, June 22, 2018

"Who's My Quarterback?"...Navigating In-patient Care

     My recent surgeries and extended stays in the hospital were an eye opener into our in-patient healthcare system.  Despite the doctor missing my fractured femur, I feel I otherwise got good medical care.  But, I sometimes also felt confused and overwhelmed.  There was a team of physicians who saw me during my admissions:
  • Hospitalists, (5 different ones)
  • Surgeon, and surgical residents
  • Oncologist/Hematologist
  • Infectious Disease specialists, (5 different ones)
     The hospital is a large medical center and teaching hospital, so I expected there to be residents and medical students.  What I didn't expect was the number of different attendings that would be involved in my care, and my resulting confusion...I needed a medical point person. With so many physicians coming to see me every day, I started to ask them each, “Who's my quarterback?"  Interestingly, there wasn't one answer.  Most said it was the hospitalist, but two of the hospitalists said it was my surgeon. 

Here are a few highlight experiences:

     1- Every time I met a new hospitalist, I had to tell them my long and complicated medical history...including my stage 4 cancer diagnosis, hip replacement, femur fracture, and multiple complications.  Each hospitalist seemed to know some parts of my history, but none knew my whole story.  I wanted to trust that they had each read my chart, but it didn't seem like it.

     2- Although I only dealt with one attending surgeon at a time, there were 4 orthopedic surgery residents that I saw. Of the groups of doctors, this sub-team seemed to have the best communication between each other and with me.  But, there was confusion about which analgesic medications I should be taking since a few of them wrote orders for different pain meds.  In total, I was offered 6 analgesics: Norco, acetaminophen, oxycodone, tramadol, gabapentin, and Celebrex. If I was inclined to do so, I could have taken all of them.  (Any questions why we have an opioid problem in this country?)  Not knowing which painkiller was the best for me, I asked to speak to a Pharm D., who came to see me after she had reviewed my chart and pain scores.  I told her I would ideally like to be on a non-narcotic agent that would treat mild to moderate pain.  After a long discussion and based on the type of pain I was experiencing, we settled on gabapentin and tramadol, (a milder narcotic.) I took the reins on this one.

      3-  A day or two after my 3rd surgery, a nurse came into my room with an arm-load of IV supplies.  She told me that Dr. ??? (I didn't catch the name) called in an order for an IV medication and she was there to start it.  I told her that there must be some mistake because I've never seen Dr. ???.  The nurse told me that Dr. ??? is an infectious disease specialist.  I clarified that I had never met Dr. ??? and would never agree to an IV medication ordered by a doctor who had never examined me nor spoken to me.  The nurse paused, stared at me for a moment, then turned and walked out of my room with her armload of IV supplies.  Several hours later Dr. ??? came to my room, introduced herself and explained the need to start the IV medication.  With this discussion, I understood, and it was started.  

     4-  I'm on 7 medications now and when I was in the hospital, I was on a few more.  I became concerned about the interactive effects of being on multiple medications.  I Googled "drug interactions" and there are several helpful resources.  Input your medications and they give very important information about the effects of multiple medication use. I encourage everyone to check out their meds.  Here's one site:

     In theory, the hospitalist, (usually an internal medicine physician), coordinates an in-patient's care.  In my experience, because a different hospitalist came to see me on most days, the care felt very fragmented.  In a move of necessity, I became my own quarterback.  I got a notebook and wrote down everything...medications I took and the time I took them, the names of the physicians who came to see me and what they said, when I went to physical and occupational therapies, my vitals (blood pressure, heart rate, temperature), and how I felt that day.  This detailed log turned out to be very helpful to me and my doctors.  Some, rather than reading my chart would ask me their question, I would reference my notes, and decisions were made.  I will always bring a notebook to any planned in-patient stay I may have in the future.  

     Medical care has become very specialized that specialists don't always seem to have the ability or time to see the big picture of the patient.  Additionally, in my experience, hospitalists are spread thin and were not able to make me feel assured that they were coordinating my care.  So I say, 

             "BE YOUR OWN QUARTERBACK!"  


Wednesday, June 6, 2018

Quick Update: Hip and Cancer

Spring at Wynn and Luna's

     As of yesterday, I've been home six weeks.  In this time, I've gotten significantly stronger, but I still have a ways to go.  
  • No more walker and the rental wheelchair has been returned.  I need to use a cane, but am trying to get around the house without it for increasing longer periods.  (My limp is  significant, however.  Gotta work on that.)
  • Wound vac...gone two weeks ago.  This was a big step forward for me.  No more being attached to a 4 lb. pump by 4 feet of tubing. The incision is slowly healing and I only have to see the wound care PT once a week now.
  • IV antibiotics...done last week.  Now I'm on three oral antibiotics, but with the end of home IV treatments, I'm done dealing with tubes. 
  • The hospital bed was returned three weeks ago because I am strong enough to make it up our stairs.  
  • After a few practice runs, I'm back to driving. 
  • PT 3x/week continues to go well. 
  • I'm going back to work this coming Monday.  My employer, AMITA-St. Alexius Medical Group, and in particular my manager, Marianne, have been incredible in supporting me as I negotiate this unexpectedly long time off.  I don't qualify for FMLA because I'm not a full-time employee, but Marianne and my director, Holly, have assured me that my job will be protected.  I opted to take this time off as unpaid, so my employer doesn't have a way to deduct my health insurance they are billing me directly.  I need this job because I need (great) health insurance, so I want to get back as soon as I can. Plus, I miss my buddies at work and our patients!
  • Although I don't have any imaging studies until next month, (brain MRI and CT scans of chest, abdomen, pelvis), my most recent blood tests for tumor markers were all normal.
     Thanks, family and friends, for your continued love and support.  I'll do my best to keep you updated as things progress.

More Spring at Wynn and Luna's

Friday, May 18, 2018

Because Stage 4 Cancer Isn't Enough-Part 3

     I did my best to present Part 3 as concisely as possible.  I am aware that my family and friends, who have been incredibly supportive to me, may be approaching the point of "Luna Fatigue".  As exhausting as my health complications have been to me, I see that supporting my recovery is taxing to them, too.  

Our Conversation with Dr. R., (my first surgeon):
          -Several days after my second, reconstructive, surgery, Dr. R. came to my hospital room.  It was around 7pm and Wynn was with me.  We had looked forward to meeting with him.
           -One of the reasons I chose Dr. R. as my surgeon was because he has a gentle manner.  Although that night he did not say the words, "I'm sorry,"  his demeanor was that of contrition.  Appropriately so. Whatever he said to us that night, it has been enough for me to work toward finding my peace with his mistake and doing my best to move forward.  I realize that I not only need to heal physically, but emotionally as well. 

Coming Home:
Compliments of Nathan
           -...required a lot of prep.  Wynn and Nathan made arrangements for a hospital bed (and wheelchair) to be delivered and moved furniture around to create a bedroom area for me on our first floor.  They stocked the 'frig with my 'usuals & favorites' and equipped the bathroom so it is accessible for me.  I was so relieved to return home and felt so welcomed. 

Current Therapies:
          -Because I had three surgeries so close together, with subsequent complications, my incision is having difficulty healing.  So, twice a week I am seen at a wound care center.  For the past month I've had a wound vac, which helps draw off the excess fluid in my hip to encourage healing. So far, things seem to be headed in the right direction.  Slowly. Nina's been especially helpful not only getting me to my appointments, but patching my dressing when there's a leak.
          -I go to physical therapy 3 days/week and do my exercises daily.  I hate to brag, but I'm kicking ass in this department.  
          -Using my chest port, I'm infusing an antibiotic twice a day.  I don't mind doing it, except each infusion takes about 2 hours. I'm also taking an oral antibiotic.  The IV medication ends at the end of May and then I'll probably take two other oral antibiotics for several months.
          -Because of the DVT and pulmonary embolism, I'm on Lovenox, a blood thinner.  Unfortunately, it's an injection into my abdomen twice daily, for three months.  
          -I'm taking two medications to help me manage pain.  I find them necessary, especially prior to PT appointments and home exercises.  
          -I still take my oral chemotherapy, Xalkori, twice a day to keep my lung cancer in check.

         -I have identified three different sources of pain; bone, muscle and incision.   The bone and muscle pain seem to get incrementally better each day.
The most problematic is the incision. The pain medications I take make all the pain tolerable throughout my day.

On Having MRSA:
          -Just before Mother's Day, I called my infectious disease doctor's office.  I told the nurse that my extended family was having a brunch and little children and babies would be there.  Before I could ask my question, the nurse said, "Oh Honey...hasn't anyone told you that you're not contagious?  The infection is isolated to your hip." No one had said that to me and she put my concerns to rest.

The Future:
          -If I can beat this infection, then I all I need to do is continue rehab.  Right now I'm using a walker, and am learning to tolerate more weight on my bad hip.  Independent walking as soon as possible is my goal.
          -If I don't beat this infection, I'm looking at two more surgeries.  The first surgery would be to remove the infected hip appliance and replace it with a temporary antibacterial appliance.  Apparently, the material the antibacterial hip is made of isn't intended for permanent use, but absorbs antibiotics well. I'd have this temporary appliance for about 3 months, and then go back to surgery to get a permanent hip.   
          -It's a waiting game, so in the mean time, as I get stronger, I hope to go back to work in early June.  My surgeon continues to say, "We'll see how it goes." 


     So... that's where I am right now.  I'm working hard to be as healthy and strong as possible just in case I need more surgeries.  I'm also working hard to find my peace with this whole mess so I can move on with my mind, body and soul as intact as possible.

Please, wish me luck!