Rhabdomyolysis

A friend texted me this reminder:  "The hotter the fire, the harder the steel."  Isn't that the truth, and I know that God is with me through yet another trial.

Although Rhabdomyolysis isn't related to cancer, breast reconstruction or my recovery, it does seem to be a part of my journey.

I'm not quite sure exactly what caused my Rhabdo, but do have some suspicions.  With having had breast reconstruction surgery in October, a breast revision in January and another breast revision in April, I haven't been able to exercise like I'm used to doing.  Finally finished with all of those surgeries, and with school out for the summer, I decided to jump back in last week and begin a regular workout schedule.  I started with my usual 3-mile treadmill walk since I still can't quite run yet and added P90X 3.  Friday I completed the workout called Challenge with 100 pushups and 70 something push-ups (assisted).  I felt pretty good through most of the workout, but pushed myself to finish strong.  I felt great and proud of myself for knocking out 100 pushups!

Saturday I was a little sore with arms like Jell-O, but that was to be expected.  I did a light workout and walked on the treadmill.  I spent a fabulous afternoon with friends and family.  We went to Nitro Circus and I felt pretty good, just a little tired.

James and I went for a mountain bike ride on Sunday.  We rode the single track Mighty Bikes at Kincaid and completed about 6 miles.  I felt really sluggish and sucked wind, but just contributed it to being tired.  I hadn't slept well because my arms were sore. 

On Monday I completed a 3-mile walk on the treadmill and a P90X that didn't use arms.  Still feeling sluggish and having sore arms, I felt like I could push through and would start feeling better by Tuesday.  After Tuesday morning's workout, I knew that it was more than just some sore arms from working out.  I couldn't really bend my left arm to touch my nose and definitely couldn't straighten my arm.  I looked at my arms in the mirror and thought Pop-eye!

No funny mirrors were used for this picture!

I Googled "swollen and sore arms after workout".  What came up was "Rhabdomyolysis".  After a quick read of the causes and symptoms, I was pretty sure that was what was going on and I headed in to see a PA at primary care.  The PA said she'd seen Rhabdo before and was sure that all I did was strain my muscles.  She sent me home and told me to take 500mg of Naproxin every 12 hours.  I went home and took the Naproxin, but after two hours, knew that there was more going on than strained muscles.  The pain reliever wasn't really touching the pain either.  With that, I called James and then had Jared take me to the ER.

The ER is always such an adventure.  There's such a range of medical needs:  someone intoxicated, another lady with some nerve damage causing half of her face to go numb, a young girl miscarrying, a kid arriving by ambulance with a broken limb.  Made me feel like my medical needs were minimal, so I waited patiently for 2 1/2 hours before they got me back to evaluate me.

I let the doctor know right away that I thought I had Rhabdomyolysis, and that it probably drove him nuts that patients Google their symptoms and diagnose themselves, but he didn't seem to mind.  He did however give me an ultrasound of my arm to make sure there were no blood clots and an x-ray of my arm before taking a blood sample.  The blood sample came back an hour later with creatinine kinase levels over 20,000 which meant they were admitting me to the hospital.  Normal CK levels should be nearly undetectable. 

What have I learned?  Rhabdomyolysis is the rapid breakdown of muscle caused under extreme conditions, usually from trauma to the muscle like an accident or by chemical means like toxins or drugs.  The breakdown of the muscle causes the protein myoglobin to leach into the bloodstream.  The kidneys try to clear the harmful protein out of the bloodstream, however they can clog the kidneys causing damage or kidney failure.  Although Rhabdo is considered rare, exercise induced Rhabdo is considered extremely rare. 

The symptoms that tipped me off that I had Rhabdomyolysis were

• weak muscles
• intense pain at the affected muscles on my arm
• swollen arm
• inability to straighten my arm
• fatigue

There are many other symptoms such as bruising, tea-colored urine, fever, vomiting or nausea, and confusion or agitation.  I didn't experience any of those, unless you perhaps ask James and he thinks I was agitated.  

Tuesday, October 27, 2015

Finally, heading home to Anchorage!

I had a great weekend visiting family and friends.  James, my designated drive for the past two weeks because I can't move my arms, was able to drive us up to Bellingham on Saturday to visit James' parents and his brother's family.  While there, Colleen was able to pull the right thigh drain that was ready - loved that!  I love visiting Jon, Colleen, Anna Corinne and Emily.  We have lots of fun together and they've got a little farm which I enjoy.  Loved meeting the llamas!

Isn't she cute?!

Sunday we were able to drive down to Tacoma and visit some long time friends from Fairbanks.  It was great to see Diana and Mary.  They made us a delicious lunch which we needed to get us through the I5 traffic as we headed north in the afternoon.  We stopped in Issaquah to visit Jennifer and Jon, James' sister and brother-in-law.  While there I went to the restroom at the restaurant and returned uneventfully.  Jennifer then went to the restroom and returned asking if I'd seen the picture of David Lee Roth.  Nope, I missed it.  I returned to check it out with this selfie as evidence.  What a laugh we all had!

No caption needed...

Yesterday, I had an appointment at UW with the Physician's Assistant.  Ann checked for infection, checked stitches and checked breasts.  Everything looked great.  She was able to remove the doppler wires from each breast.  She explained that they have a dissolving rubber bulb on the end where it is connected to the vein or artery.  The longer they are left in, the more the bulb dissolves, the easier it is to pull out.  She removed the tape covering the exposed ends and gave a tug to the wires on the right breast.  Came out like a breeze!  She removed the tape covering the exposed ends and gave a tug to the wires on the left breast.  Not so easy peasy, which made me a little queazy as blood came running out.  She patched up the hole and I was ready to go.  Unfortunately, I still had one drain in my left thigh still draining over the 30cc allowed per day.  On the bright side, because everything looked great, I didn't need to follow up with Dr. Said today.

This morning James was able to pull the final drain.  The PA suggested pulling it before flying and then wearing compression stockings for the flight home.  In addition to the compression stockings, I've continued to need to wear my compression sleeve because of the Lymphedema in my arm.  I'll follow up with medical providers in Anchorage.

After 4-6 weeks I can resume activity, taking it easy athletically.  In December I have a follow up appointment with Dr. Said where he'll outline the second part of the reconstruction.  This ends part one of four for this next part of my journey.  More to come at that time...

Friday, October 23, 2015

Since surgery and being released from the hospital, it has been a week of ups and downs. The first hurdle was waking up in the hospital with a severely swollen right arm, Lymphedema.  Lymphedema is not curable and results from damage to or loss of lymph nodes.  Lymph nodes are a part of the immune system and not having them prevents lymph fluid from draining well, and the fluid buildup leads to swelling.   Lymphedema is a life long problem.  Because I had so many lymph nodes removed during the bilateral mastectomy, I've had to be cautious with my right arm.  I wear a compression sleeve when I work out, run, mountain bike, do strenuous activity around the house, fly on an airplane...you get the idea.

When James first realized I had Lymphedema and pointed it out to medical staff, they seemed a bit unconcerned.  The thing with Lymphedema is that not only is it uncomfortable, but it restricts the range of motion in my arm and it is painful.  So painful that I couldn't straighten my right arm without sharp, intense pain - while on pain medication!  The medical staff didn't know anything about Lymphedema and were unable to help.  Fortunately, I brought along 2 compression sleeves and James ran home to get one.  A week later and the swelling is about gone and there is little pain when I straighten my arm.  The Lymphedema specialist at UW is out of the country so I'll follow up with a doctor when we get back to Anchorage.

A second little scare was when my right flap lost color and felt cool on Monday night.  We called in to the medical staff who asked us to watch it overnight and call in the morning if we were still concerned.  Tuesday morning, the flap was still white and cool.  They asked us to come right in, however when we got into the examination room and Dr. Said looked at the flap, it had color and was warm!  He assured us that he believed us and we weren't crazy.  He explained that with the new veins and arteries in the flaps, blood would sort of clot and slow causing the flap to go white and become cool. When the "blood clots" broke free, the color and warmth would return.  He had me add an aspirin daily to thin my blood.  Since taking aspirin on Tuesday, I've experienced no further flap complications.  While there, they pulled one of the four drains.

A Monday evening walk along Golden Gardens Park.

The third, and I hope final scare was when I woke up on Thursday to a red, warm, swollen inner right thigh just above the drain and around the donor site area.  After waiting for a call back, we were finally able to be seen at 3:00.  It was in fact an infection and they started me on antibiotics.  On a positive note, they pulled another drain.  Now just two drains left!

Thursday night we went to see Owl City at the Neptune Theater next to UW.  Another really cool theater and the band was amazing.  I did have a small episode of, "James get me a chair quick before I pass out."  When he got me to the hallway, he said I was as white as a ghost.  I guess the infection was taking a little bit of a toll.  After sitting for a few minutes I felt much better.  I really wanted to see this band, so we went back inside the theater where James found me a barstool to sit on and we were able to enjoy the rest of the concert.  I woke up Friday feeling much better!

"Flowers" on NE 43rd St and University Way NE before Owl City.

Beautiful view from our VRBO.

Thursday, October 22, 2015

I was in ICU until Saturday.  The first 24 hours are most critical, so the nurses checked the blood flow in each flap every hour.  They check it by listening to a doppler machine connected to some metal wires coming out of the flaps.  First listening to the right side and then flipping a switch to listen to the left side.  They also have a small stitch on the right flap where they can hold a doppler tool to listen to blood flow in the artery.  They leave the machine running day and night.

They also monitor all of the usual vital signs.  Even though I had a third IV in an arterial vein near my wrist to monitor blood pressure, they still took my blood pressure each visit.  They also gave me antibiotics through an IV and I could use patient controlled morphine pump through one of the IVs.  They ended up taking the morphine pump out on Saturday morning, as I wasn't using it.

I shared the room in ICU with Mr. Pfefferkorn.  He had been in ICU for 16 days when I arrived.  I couldn't wait to get my own room as I could hear him at night crying "get me outta here" over and over again along with the names of family and friends. Unfortunately, I had to spend a second night in ICU but I was only being woken every 2 hours to have my flaps and vitals checked and I was able to get up and out of bed by myself, with a bit of a struggle.

I forgot to mention that when Dr. Said went over the pre-op information two days before the surgery, I learned of my restrictions:  can't lift over 10 pounds (a gallon of milk is 8 pounds), can't lift my arms to the side more than 45 degrees, can't reach behind me, can't reach in front of me higher than 90 degrees and....can't drive for 4 weeks!  So getting out of bed means all abs and James' help because I can't push myself up.  I also can't lift my legs out sideways which means I'm sitting and spinning to get in and out of the car and bed.  Doesn't feel so hot on a bottom full of stitches!

Saturday evening I was hoping to leave the hospital, but because discharge was going to take so long and they had a private room on the surgery floor, we opted to move.  I was no longer hooked up to any machines or IVs, however I still had in two IVs and the doppler wires.  Those were all finally cut loose on Sunday morning when we were able to leave the hospital.

Fortunately, James' job is allowing him to stay with me the entire two weeks, and Jared and Caleb are being taken care of by family and friends.  Thank you to everyone for the calls, texts and prayers.

Wednesday, October 21, 2015

Surgery day was Thursday, October 15, 2015.

When the alarm went off in the morning, it was straight into the shower for an antibacterial cleansing then off to the University of Washington Medical Center.  We checked in by 5:45am and were back in the pre operation room five minutes later.  The room was a revolving door of nurses, doctors and anesthesiologists from my surgical team introducing themselves and getting me ready for surgery.  One of the anesthesiologist placed the first of my three IVs with ease.  James and I enjoyed talking to him about Africa, a place I would someday love to visit!  He had just returned from visiting his family there.  James tried to get his mom and dad's name so we'd have a place to stay, but no such luck.  :)

Dr. Said came in with Dr. Miller and they sketched out the incision sites on each of my upper thighs.  James said it wasn't pretty.  They marked along my bikini line from the middle back of my thigh to the front of my groin, about 12 inches and then a vertical line about 6 inches long from the middle of my groin down towards my knee.  That's about what I've got for stitches right now - Yikes!

One of the nurses from the surgical team stopped in and introduced herself.  James asked her what the  doctors do for lunch and breaks...10 hours is a long time to be in surgery.  She giggled and assured him that they go in prepped with everything they need and it isn't a big deal.  As Dr. Said told us, it is just another day at the office for him, although he also said he understood that it wasn't for us.

It wasn't too much longer and the anesthesiologist asked me if I wanted some valium before heading back.  I told him no, as I was completely at peace knowing that God is at my side.  James gave me a kiss and I was on my way down many back hallways to the operating room.  When he wheeled me into the room, the surgical team was gathered around a large monitor looking at what appeared to be the CT scan of my upper legs.  They were looking at the veins and arteries.  They slid me over to the operating table and everyone from the team of 15 greeted me and shook my hand.  They strapped me to the table, put a mask over my nose and mouth telling me to breath deeply.  I was out for 10 1/2 hours.

James received updates from the head nurse every two hours.  What a long day for him.  About 6 1/2 hours into the procedure, the microsurgery portion was about complete and they were monitoring the newly transplanted tissue for blood flow while they began sewing up the donor sites.

Dr. Said came out after surgery letting James know that everything went well and then I was taken into ICU where they monitored my newly placed skin flaps every hour.  They watch the flaps very closely the first 12 hours as that is when 80% of the complications occur.

Waking up in ICU.

If you're wondering what a TUG Breast Reconstruction Surgery is, check out this site:  http://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/tug

Wednesday, October 21, 2015

In preparation for the TUG breast reconstruction, last week I had a pre-op visit with the surgeon as well as a CT scan on Tuesday.  The contrast CT scan is used by the surgical team to map my veins and arteries, planning how they'll stitch the flap together.  Absolutely amazing!

We spent Tuesday evening and Wednesday enjoying concerts.  The Wind and the Wave was a small concert at the Sunset Tractor Tavern in Ballard.  They were a fun band in a small setting.  Here's one of their songs.

Wednesday night we went to the Paramount Theater in downtown Seattle.  This theater originally opened in 1929 and seats about 2,500 people.  It is absolutely beautiful inside this venue.  We were fortunate enough to get seats up front right outside the standing room only section to see Chvrches.  They were another amazing show, and another Scottish band.  We saw the Scottish band Of Mice and Men this summer in Seattle.

Then it was home to bed and set the alarm for 4:30am so that we could be at the University of Washington Medical Center at 5:45am to check in for surgery.

Tuesday, October 20, 2015

A lot has happened in the 2 1/2 years since I last wrote this blog.  There were many times I thought about writing and wished I had kept up with it.  I finally decided that it isn't too late to jump back in and now is the perfect time.

About six months ago I began pondering breast reconstruction.  I wasn't unhappy with my body, but there were definitely times when I was disappointed I couldn't wear a certain shirt or dress.  And putting on prosthetics was certainly a reminder of Breast Cancer.  Not that it was a good or bad thing, just that it was.

During these past months, I spoke with a friend who recently underwent breast reconstruction and consulted with two surgeons about my options.  My friend was open and honest about the process.   I appreciated her willingness to share and admire her greatly for the light she sheds on cancer and all that she does to support the American Cancer Society.  Thank you, Becky!

When I consulted with the surgeon in Anchorage, she shared the process she'd recommend which was  inserting expanders and then implants.  She used words like probably, likely, might, and possibly.  Those made me a bit uncomfortable.  Going through a major surgery to possibly get an "A" cup just didn't seem like something worth the risks.

James and I celebrated our 20th Wedding Anniversary in Seattle a few weeks after the consult with the Anchorage surgeon.  I decided to seek a consultation with a doctor at the University of Washington Medical Center.  Within the week that we were traveling, I was able to get an appointment with Dr. Said.  When we met with him, he asked how I was able to get the appointment at the clinic off campus.  I just emailed, they called and voila!  I had an appointment.  It was a God thing.

While at the appointment, the plastic surgeon explained the various options and the success rate and data for each type of surgery.  He explained that trying to stretch my radiation damaged skin and insert implants was maybe a 50/50 percent chance.  He said he would not recommend that surgery for me.  He then looked at the second option which was a DIEP Breast Reconstruction where they take muscle, tissue and skin from the abdomen to build breasts.  He said that also was not a good option as I didn't have enough abdomen tissue to build two breasts.  He then talked about the latissimus dorsi flap which uses muscle and tissue from my upper back.  He didn't like this option for me either because it uses a "good" muscle.  Are there any bad muscles?

The next two options were the gluteal free flap which uses muscle and tissue from the buttocks, and the TUG or transverse upper gracillus which uses muscle and tissue from the upper thigh.  Of the two, he explained the TUG would be my best option.  Success rate for this surgery is above 95% - much better odds than the 50/50 for expanders and implants.  All of the benefits included higher success rates, using my own tissue for the entire surgery, long-term higher satisfaction among patients, and never having to mess with the site again as I would with implants.  After the consult, I immediately knew that I was going to have a TUG Breast Reconstruction with Dr. Said.  James was 100% supportive and the next part of the journey began.

A trip to Mexico after completing a year of cancer treatments.

James & Lisa

We had our picture taken here 20 years ago!