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.

Pain:
         -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!

          

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.

[https://www.mayoclinic.org/diseases-conditions/mrsa/symptoms-causes/syc-20375336]

     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.

  

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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.

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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 dies...it 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.    

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!

Hot Pilates and Stage 4 Cancer

     I've got a lot going on.  Couple stage 4 cancer with routine, run-of-the-mill, maladies and I end up seeing a bunch of doctors.  Just in 2017, I've meet with seven new doctors and will probably meet two more by the end of the year.  Upon meeting me for the first time, the last three doctors said some version of  "You look better in person than you do on paper."  Each time, I took it as a complement...but it also reminded me of how sick I am.

      Last week, I met a gastroenterologist.  As he read over my records, he said the line..."You look better in person than on paper."  So I told him that my personal and, until now, private goal is to be the "healthiest looking, sickest person I know."  I told him that I'm trying to eat right, sleep right, and exercise daily.

     Decades ago, I became a jogger as an efficient way to keep my weight in check, manage my cholesterol, and stay aerobic.  I've never been an athlete, but I've always enjoyed being active, so my family and I also hiked, cycled, kayaked and skied, both downhill and cross country. I can no longer do many of the activities I used to do.  My body hurts when I try.  So, I've had to find new activities...ones that would help me manage my chronic aches and pains.  

Brigid

     Several months into my cancer diagnosis my dear friend, Brigid, suggested that I try a hot Pilates class that she had been going to.  [Brigid and I have been workout buddies for over 20 years...running, (including a Chicago Half Marathon), yoga, TRX, Zumba, weight rooms, and even backpacking the Havasu Trail in the Grand Canyon.]  I love working out and getting sweaty, but the thought of being in a hot, (100 degree), humid room was so utterly unappealing.  It took me nearly two years to finally agree to trying hot Pilates.  

     The first few classes were pretty awful. I was so red-faced and wrung out that I had to step out of the room a few times to cool off...pacing in the lobby area and arguing with myself about why I should go back in.  At the end of those classes I was soooo spent. 

The studio where I take hot Pilates...downtown Palatine.

     Well...fast forward to now.  This week marks 3 years that I have been attending hot Pilates classes on a regular basis.  I, not only got used to exercising in a hot room, but now feel like I NEED to be there at least twice a week.  Working out in a hot room makes my body feel so much better.  My joints are looser and the heat allows me to be more flexible.  Being able to move easier has definitely made me stronger.  

            I highly recommend it!
(...with modifications whenever needed, e.g. with my bad hip.)

With instructors, Robyn (owner) & Piera.  (Ashley is my other instructor.)

     So...along with cycling (indoors during Chicago winters), time on a rowing machine, weight workouts, calisthenics, and stretching...hot Pilates is definitely helping me meet my goal. 
 

CT Scans #14 and Joint Disease in Cancer Patients

     Well...I was very close to being able to do it.  I was almost able to wait a full 6 months between CT scans this time. I initially scheduled this round of scans 6 months from my last ones, but unfortunately in late September, I had a couple weeks of feeling really crappy, (more than the usual fatigue and not just some achiness, but down right pain, especially in the bones of my left hip).  As I have done before, whenever I feel crappy for more than a few days, I convince myself that my cancer has figured its way around my chemotherapy and that I've entered the phase called "disease progression."  Despite trying to be as reasonable and rational as possible, I know that I'm not over reacting...the clinical trial report indicated that the average ROS1 lung cancer patient on Xalkori will have 19.2 months of disease control.  I've been on Xalkori for 55+ months.  (Pretty soon that will be 3-times longer than expected!)  

     Certain that my cancer was growing again, I moved my CT appointment up by a couple weeks. So last Tuesday I was in the CT tube again. I asked the radiologist to not only compare these scans to my most recent scans, but to also compare them to older scans.  I was concerned that, perhaps, the changes in my body were so incremental that the only way any demonstrative changes could be appreciated was by looking at scans from a few years ago.

The good news:  
     The day before yesterday the radiologist called me.  He looked back at my scans from 2015 and feels confident that my cancer is stable. Yay! So, for now, Xalkori continues to control my cancer below my neck. 

The bad news, mixed with some good news:
     The degenerative joint disease (arthritis) in my left hip, coupled with metastatic disease, appears to be worse.  The combination of arthritis and cancer in my pelvis and head of my femur have resulted in progressive joint deterioration. Hence the pain, and I now realize that dealing with pain is exhausting.  The radiologist said that, "...Under different circumstances, a person with a hip like this would talk to someone about a hip replacement in the future." What he meant was, people with stage 4 cancer don't get to get new hips.  I told the radiologist that I had just returned from the CancerGRACE Lung Cancer Patient Forum where I spoke to a ROS1 specialist, Alice Shaw, MD, PhD from Mass General in Boston.  Suspicious of significant joint disease in my hip, I asked Dr. Shaw if patients like me ever get new hips and she said, "Yes!".  Since we are living longer on new therapies, and our quality of life is such that we are able to continue to be active, she has a few patients who have had joint replacement surgeries.  Successfully.  At Mass General, these patients are seen in consultation by a sub- sub-specialist called an ortho-oncologist.  

     So...onto my next health adventure.  I made an appointment for later this month with a local orthopedic surgeon who specializes in hips.  Then, as needed, I'll seek a second opinion with an ortho-oncologist, and knowing myself, a third opinion as well.  

     Oh, also, my next brain MRI is scheduled for mid-November.  I'll keep you posted. And...

...as always, please wish me luck!

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