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 the need, 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!


Monday, May 14, 2018

Because Stage 4 Cancer Isn't Enough-Part 2

      As I sit down to try to write Part 2, I'm finding it difficult to put my thoughts together.  I haven't yet wrapped my head around the events of Part 1, and even wonder if I don't have some post-traumatic stress going on.  Thinking that, with the home physical therapist's directions, I was walking around, including stairs, with a broken femur for four days makes me cringe.  On top of that, due to the fracture, I bled so much into my hip that my hemoglobin fell to 5.0 g/dL, (normal range for women is 12.0-15.5 g/dL).  The American Association of Blood Banks' guidelines recommend transfusion at  7-8 g/dL. Although I received four units of blood before the second surgery, as I said good-bye to Wynn, Nathan and Nina, I worried that I would not make it out of that surgery OK.     

     The second surgery with my new orthopedic surgeon, Dr. J., went well.  Here's the X-ray:

     The five bands around the stem of the artificial hip are there to support the fractured portion of my femur. The break is hard to appreciate on this X-ray, but it's on the left side of the stem and splinters downward.

     During all the drama, there was a moment that made me and my family laugh...

     As I was waking up in the the recovery room I was confused, and loud.  I heard male and female voices, that I didn't recognize - which turned out to be Wynn, Nathan and Nina's.  So I started shouting questions:

          Me:  "Where am I?"
          Nina:  "You're in recovery.  You just had surgery."
          Me:  "Surgery?!  For what?! What happened that I'm here?!"    
(Remember, I'm yelling. And I have no idea why these people are giggling.)
          Me:  "Who are you people?!"  
(Then I looked down at my chest and I saw the hospital gown I was in.)
          Me:   "Whose clothes are these?!  Where are my clothes?!"
(More giggling.)
          My thought:  They're so rude.

     Oddly, I remember this recovery room tantrum with great clarity.  With anesthesia and an amnesiac, most folks wouldn't.  This memory is one of few moments of levity I can muster up.

     Several days later I opted to go to a rehab hospital rather than going home.  Along with skilled nurses to watch me, I would get PT and OT twice a day, rather than twice a week, (in home therapies), if I went home.  As far as rehab hospitals go, mine was a very nice one.  It was clean, nicely decorated and most importantly to me, it didn't smell funky.  I was there 10 days, getting stronger with therapies, until I started spiking fevers. 

     So...I was sent back to the large med center, where I had more tests, (blood, ultrasound with hip aspiration, and MRI).  I was found to have a good sized abscess in my hip, along with three pockets of hematoma.  My surgeon explained that the abscess needed to be removed to maximize the effort to fight a suspected infection.  Additionally, hematomas, (solid areas of clotted blood), are a great place for infections to grow and they, too, needed to be removed. A few days later, I was back in the O.R. - my 3rd surgery in 24 days.  Dr. J. debrided my hip of the abscess and hematomas, irrigated with lots of saline, applied antimicrobial sprays, and placed antibiotic beads in the joint which, overtime, slowly release an antibiotic.  He sent biopsies for culturing to the lab to check for infections.

     The results indicated that I have a staph infection in my hip, infamously known as MRSA, (methicillin-resistant staphylococcus aureus).  Being told I have MRSA felt like I was being told I have head lice. (Yuck.) The infectious disease specialist explained how common MRSA is, especially in patients that spend as much time in the hospital as I had.  I, of course, Googled it to learn more.  Here's what the Mayo Clinic website on MRSA has to say:

Most MRSA infections occur in people who've been in hospitals or other health care settings, such as nursing homes and dialysis centers. When it occurs in these settings, it's known as health care-associated MRSA (HA-MRSA). HA-MRSA infections typically are associated with invasive procedures or devices, such as surgeries, intravenous tubing or artificial joints.

Another type of MRSA infection has occurred in the wider community — among healthy people. This form, community-associated MRSA (CA-MRSA), often begins as a painful skin boil. It's spread by skin-to-skin contact. At-risk populations include groups such as high school wrestlers, child care workers and people who live in crowded conditions.


     It took a lot of reading for me to find a comfortable place to be with MRSA.  The good news is there are relatively new antibiotics that are now used and many of us beat the infection.  I started I.V. Vancomycin in the hospital and switched to I.V. Daptomycin when I was discharged.  Due to some side effects, I switched back to Vancomycin, which is a 90-minute I.V. therapy, twice daily.  I've had to juggle my appointments to work these into my day.  I'm also taking an oral antibiotic.  Right now, the end date for these treatments is planned for May 30th.

     Once I was set with the antibiotics, I was set to go home.  But of course, I was missing one last possible complication.  On the morning I was planning to be discharged, an astute 5th-year orthopedic resident noticed that my breathing seemed a bit labored.  He asked me if I was "short of breath".  I told him that I didn't think so, but it made me hyper-aware of my activities and my breathing.  By mid-afternoon, I realized that I was short of breath.  A CT scan found a small pulmonary embolism, (PE), a blood clot in a lung artery.  Further testing found a deep vein thrombosis, (DVT), a blood clot in my calf, not uncommon is patients with decreased mobility.  The most common cause of a PE is when a portion of the DVT breaks off and makes it way to the lung artery.  My hopes of going home that day were dashed.  I was immediately placed on a continuous I.V. of a blood thinner for a few more days.

     By then, I was so sick and tired of being sick and tired.  My dear friend, Brigid, came to visit me and I announced, "You may not want to be here.  I'm cranky and bitchy.  I really need to get the hell outta here."  Brigid laughed and said, "I like seeing this."  That day, when each of my doctors came into my room, I asked the same question..."What do I need do to so you'll let me go home?"  I wrote down each goal and started the process of checking off the list.  Four days after discovering the PE, I went home.  It had been over a month since my initial surgery.  Being home has made a huge difference in my recovery.  I'm eating better, sleeping more soundly, and in general, am much happier.

     There is no doubt that I've gotten healthier and stronger since I've been home, but I'm not out of the woods yet.  I'll wrap this all up in Part 3.

[Photo: Copyright: <a href=''>pakhnyushchyy]

Sunday, May 13, 2018

Because Stage 4 Cancer Isn't Enough-Part 1


     This is a long and windy story so the skinny, metaphoric version is this...I was hit by a Mack truck, and didn't die.  The long version is this...(and it is long so I’ll post it in parts).


     For the past decade, or so, I have struggled with arthritis in my left hip.  Given my stage 4 cancer status, I didn't think a hip replacement was possible.  However, because I've done so well on my oral chemotherapy, Xalkori, I've been able to be pretty active...cycling, Pilates, workouts, etc.  My ongoing, progressive pain was starting to get in the way of my life.  After meeting with multiple orthopedic surgeons, including an ortho-oncologist, I was encouraged to get a hip replacement, despite my cancer diagnosis.  I ended up choosing Dr. R. because he offered a minimally invasive procedure (back to work in 6 weeks), has successfully done several friends and colleagues hips, and I liked his bedside manner.  In my first meeting with him, he asked the most questions about my cancer and explained differences in techniques he may need to consider. I was most comfortable with him.

      Surgery was scheduled for Friday, March 23rd at a large, well-known medical center and teaching hospital in Chicagoland.  Although it went well, later that day complications occurred causing the entire month of April to be a traumatic blur. 

      These days hip replacement surgeries can be outpatient procedures.  Some folks go in early for surgery, are walking a few hours after surgery and doing stairs a few hours after that.  If all goes well, they get to go home later that evening.  I was told that having metastatic cancer in my hip increases the bleeding risk during and just after surgery, AND then because I have cancer, the risk for clotting goes up. As a precaution, I was to be watched carefully by blood testing and given an anticoagulant.  I was a patient that would stay at least one night in the hospital, maybe two.

      I reported for surgery at 5:45 am.  Everything went as expected and I was in surgery by mid-morning.  While I was in recovery, Dr. R. spoke with Wynn in the waiting area.  He was very happy with how the surgery went;  I "tolerated it very well."  He told Wynn that he fitted the new hip into place and the post-surgery X-ray looked great.  Soon after I woke up, they’d get me up and walking.

      Here’s where my story goes south.  It’s such a nightmare that even as I write it now, it still doesn’t feel like my story...these things don’t happen to me.

      On my maiden walk with the physical therapist (PT), a few steps from my bed, I suddenly heard “clunk” and felt pain shoot down my thigh.  The PT asked if I bumped my walker and I said, “No.  That was my hip.  I’m afraid because I have pain now.”  She got me back into my bed and immediately called the resident who said that they’d likely need to get an X-ray, but that he would call Dr. R.  Unfortunately, Dr. R. decided an X-ray was not necessary.  My post-surgery X-ray was picture perfect and the pain I reported was likely due to the significant joint replacement surgery I'd just had.  

     The decision against an X-ray at this juncture was a huge mistake...the hugest.

      Later that day, a PT returned to my room and we walked some more.  We walked to the floor’s stairwell and she showed me how to go up and down.  The following day, after showing a PT that I could bear some weight on my new hip and could go up and down the stairs, I was sent home and a home health nurse and physical therapist were to be at my house the next day. The nurse came to check my vitals and draw a blood sample to assess the amount of blood thinners I needed to be on. The PT came to help me continue to bear weight on my new hip, and get around more and more. 

     In an effort to make a long story a little shorter, after four days at home, trying to follow the therapy instructions I was given, I realized that each day I was getting weaker. I was so weak that Wynn made the decision to have me taken to the local hospital by ambulance.  The first thing the ER physician ordered was a hip X-ray and I was found to have a femur fracture with bleeding into my hip, and my new hip was dislocated.  I was transported back to the large med center by ambulance where I was found to have a hemoglobin of 5 and I received two units of blood.  My left thigh was so swollen due to the bleeding that it looked three times larger than my right thigh.  After reversing the anticoagulant therapy for a few days and getting two more units of blood, I was back in the operating room, a week after my initial surgery, with a different surgeon.  He removed my new artificial hip, put in another one and placed five bands around my femur to shore it up at the sight of the fracture. Several days later I went to a rehab hospital where I could get PT and OT twice a day.  

     I was optimistic I was on the road to recovery, but there were more complications.  That's Part 2 of my long and windy story.

[Photo: Copyright:'>denyskuvaiev / 123RF Stock Photo]


Saturday, March 10, 2018

Learning to Find a Purpose

     Aside from being a lung cancer ninja, I've been a genetic counselor for 35 years.  I love my job.  I don't have any difficulty getting my morning routine going so I can get to work because I enjoy being there.  Up until 8 months ago, I was working with a medical geneticist in a Pediatric Genetics Clinic.  When the medical geneticist retired last summer, I was moved to Maternal Fetal Medicine.  I now see pregnant women who are at an increased risk for having a baby with a problem.  On most days, I'm able to give my patients reassuring information that their baby appears just fine.  But because Maternal Fetal Medicine practices see 'high risk' pregnant mothers, the nature of our business is a poignant reminder that things don't always go well. However, I feel that the work my team does makes a positive difference in the lives of our patients.  

     This past week I saw a patient that is making a difference in my life.  I've been thinking about her for days now and feel a need to write down what she said to me...words that I cannot get out of my head...and my heart.  

      This patient was added to my schedule the day before I saw her, referred to us in her 2nd trimester because she had an abnormal prenatal blood screen and abnormal ultrasound findings that were seen on an exam in her regular OB's office.  She and her husband are in their 40's and they have two healthy children, (one in grade school and one in junior high). Although this was an unexpected pregnancy, they were happy to welcome another child into their family.  The patient let me know, early-on into our meeting, that she and her husband are "very religious."  

      Among many issues, we talked about her abnormal screening result and the abnormal ultrasound findings in the report from her OB.  It's not unusual for parents, in their effort to be hopeful and optimistic, to seem as if they are not grasping the gravity of the situation.  I knew and felt how difficult it was for them to re-hear bad news.  I knew how difficult it was to process the words that were being said.  My heart ached as I watched and listened to this couple, across the desk from me, vacillate from asking appropriate, thoughtful questions to making irrational, irrelevant statements.  

     Following my meeting with them, they were going to have an ultrasound by our high risk obstetrician, so before they left my office, I said to them, as gently as I could, "Because of the abnormal screening test, the high calculated risk for a chromosome abnormality, along with the significant ultrasound findings, we are very concerned about the viability of this pregnancy."  After a long pause, the patient again said, "We are very religious."  Then she said to me...

      "We have two beautiful children at home and we've had three miscarriages.  We gave up on another baby because we thought we were just too old.  When I got pregnant, it brought my husband and me closer together.  Then when we found out there could be problems, my husband and I got even closer.  When we shared our news with our family, our family got closer and when we shared our news with our religious community, our community got closer.  So...if this baby had a purpose."

      These words have moved through my mind, body, and soul ever since she said them.  They reflect her wisdom and her ability to find meaning while on a most difficult and painful journey.  I was slow to react to her words.  I was only able to nod in understanding because I couldn't find the right words at that moment.  I don't know how she thinks I took them, but I wish there was a way that I could tell her how much she has moved me and how grateful I am that our paths crossed. 

     It's not possible for me to think about what she said without reflecting upon my own situation.  Her words are making me deliberate deeply and broadly, and I really hope that I am able to use this pearl of wisdom to help me find meaning and purpose, as I travel on my own journey.    

Thursday, December 7, 2017

Another Birthday...who knew it could happen?

     Today I am celebrating my 59th birthday!  I woke up with a really bad cold this morning, feeling miserable with typical bad cold symptoms.  When the morning mind fog cleared and I realized that it was my birthday, I was energized to make the best of my day because I never thought I'd make it to 59 years.  One week shy of five years ago today, December 14, 2012, was the day I learned that I have stage 4 cancer.  At that time, the chance that a stage 4 lung cancer patient would ever become a 5-year Survivor was a measly 2%.  TWO PERCENT!  I found a more recent stat from 2016 indicating that the 5-year survival rate is now up to 14%.  With new treatments and technologies, that's a whole lot better, but an 86% death rate is still pretty crappy.  

     Along with my new iPad, (thank you, Wynn), my other big birthday gift was my most recent brain MRI result.  The small tumor that was CyberKnifed back in March continues to look like it's dying away and there were no new tumors found.  For now, that's a huge gift...given that I expect more in my future.

     So today, I'm filled with gratitude that I'm beating the odds.  I'm not sure why my luck's been holding out, but it is and I'm really hoping for more time and many more birthdays.  

     To my beloved family and friends, your ongoing love and support are making my journey do-able.  From the bottom of my humble heart, THANK YOU!