Surgery a Success - Ready to finalize the battle planning

We won this round – and are ready to finish with the rest of the battle planning.

We had surgery on Tuesday of this week at St. Mark’s.  I absolutely adore my new orthopedic oncology surgeon – Jodie Miles.  She is young, smart and so personable.  I count myself very lucky to have found such great doctors in her and Jason Stinett (my oncologist).  They both answer questions on the weekend and go out of their way to be there for you when you need assistance.  The surgery on my femur went well.  They made three smallish incisions the outside of my left leg.  They put the rod into the femur through my hip and then strengthened the whole thing with screws in my knee and hip. 

I find the worst part of the surgery to be that time when you are still awake but away from your family.  You are on the gurney in the cold surgery room waiting for everything to come together and for the anesthesia to kick in.  This time – I did shed a few tears for the anxiety of it all.  Like I mentioned – Jodie Miles is so incredibly kind/empathetic…she isn’t afraid of the human side of her practice.   She was very comforting and sweet to me during this vulnerable time period.

The 3.5 hour surgery went well and I joined my family/loved ones in my hospital room.  Alan – stayed with me the entire day (except when he couldn’t ie – in the surgery room) and then spent the night as well.  My pain was very tough that first night – at around 0400…I was ‘coming out of my skin’ with it.  Luckily we were able to get ahead of the pain again…but it was amazing the amount of pain killers it was taking.  Later that same day, my father Rex was on his ‘tend Nannette’ shift.   My blood pressure started to drop as we now had too many narcotics in my system.  I loved that he was there to say something to the nurses to avoid any problems. 

After that eventful first day/night…the physical therapy started and I got to practice with the walker.  It will be great to have mine for support over the coming weeks.  I have big plans in place for decorating it into a thing of beauty….let me know if you want to help or have ideas on how to ‘supe up’ my ‘ride’.  I learned to walk, sit, use the restroom, navigate stairs and get in and out of various sized cars.  The pain is much more tolerable now that the surgery has taken place….it is more intermittent and just ‘different’ than the chronic pain from before. 

I've had a few people ask - so what does all this mean.  To be honest we are still finding out all the details BUT here is what we know so far. 

The bone biopsy is still being processed – but we found out enough to know that we are fighting a carcinoma and not a sarcoma.   That means the cancer in my leg is secondary bone cancer or metastatic breast cancer. This puts my breast cancer at stage 4 because it has reappeared in a new place and has impacted another ‘organ’.  In a nutshell – I will never be fully cured but there is hope of controlling the disease for as long as possible.  As soon as all the testing is back – this will be what our game plan involves – controlling the disease and preserving my quality of life while having it be as long as possible. 

We did also learn from the PET Scan results that the right lung, middle lobe has a very small amount of the cancer showing there.  The doctor called it miniscule and compared it to the size of a pencil eraser.  They also found one lymph node which also has signs of the metastasized cancer.  For now – I know that my left leg will be undergoing some radiation in an effort to reduce the tumors in my leg as well as strengthen the bone and help with pain management.  We anticipate more answers to come as we meet with both Dr. Miles and Dr.  Stinett next week (Tuesday) to discuss the rest of the findings from the tests and  go over the various treatment options available to us.  

To close – thank you so very much for your love and support this week.  I felt it…Alan felt it and my extended family felt it while they read your comments on Facebook.   While – I was unable to write back on every comment….it was a great source of comfort to me as we navigated the scarier aspects of the past several days.  I felt loved and support in ways I could never have imagined.  Personal notes, photos, funny quips and so many amazingly wonder items – such as various parts of the JetBlue family dressing up in pink in honor of surgery day.  I am just so touched, honored and humbled by the outpouring of love for me.…as well as for my family and friends.  I feel like with all of you in our corner – we can face and achieve absolutely anything. 

XOXO

A Girl With a Fight: Round Two

Sometimes - It only takes a few words to change your life forever.

In our case - These words were said late Friday night/early Saturday Morning (10/10 - 11). I had just returned home from a quick business trip to NYC. A young ER doctor looked at my CAT scan and then into our eyes and said - "I'm afraid it isn't good news - it appears you may have bone cancer." Alan and I just looked at each other in shock and a couple of tears escaped from my eyes.

Let me back up - Since the end of June of this year - I have been experiencing 'hip/leg' pain. It came on strong and suddenly but just as quickly went away. My assumption was my chronic lower back issues had flared. I spoke with my oncologist - and we did an MRI on my lower back with nothing abnormal appearing. Phew.  There is always a concern that cancer has come back and metastasized. We were incredibly relieved.

The months passed and the pain slowly became chronic and more and more painful. I went to an orthopedic sports doctor and did physical therapy - with no relief. I went to another doctor and was within one week of having another MRI - this time on my hip. But first - I had the NYC trip.

My intent was to walk as little as possible in NYC due to the pain in my hip/leg and my dreadful limp. Unfortunately - the yellow taxi stop at JFK had other ideas. There were no taxis available and the gypsy cabs would not take me to Long Island City as they prefer to catch fares to Manhattan. More money for them as they are almost guaranteed to get another fare/customer in the city. I ended up taking the Airtrain and Subway to my hotel. And - as is typical - there were complications on the trip which required more walking. Of course there are a couple funny stories involving a homeless man and a bag of rice...and another involving an elderly polish man who was trying to convince me to move with him to his homeland. If you want to hear those - I'm happy to share. They are both quite amusing tales in and of themselves.

By the end of the trip - my leg was UNHAPPY and my limp more pronounced. After the business meetings the next day - I went to the airport and was lucky enough to catch an earlier flight home. This welcome news allowed me to go to a family event after Alan picked me up from the SLC airport at 8pm. We left the party early (10pm) due to the pain I was having with my leg...and while walking out to the truck (with Alan carefully holding my arm)...the ground opened up under my good leg. A water main cover was loose due to an overgrown tree root and my leg fell down the hole clear up to my upper thigh. The result was a painful wrenching of my bad leg, torn nylons and a missing shoe. I was also covered with dirt.

I was in tears from the pain and we quickly made the decision to head immediately to the ER...and this is where we heard the words we weren't prepared for after the CAT scan. It appears to be bone cancer. As luck would have it - my oncologist had recently retired. I was without an oncologist to go to the next day. However, we have two very good friends - husband/wife - who have recently each gone through battles with cancer - and they were able to get us into their oncologist very quickly. Dr Stinett likewise got us over to an orthopedic oncologist surgeon - Dr Miles. They were both fantastic. The first course of action is to try and stabilize the pain (which is pretty severe). The ER had given me crutches and we bought an inexpensive wheel chair - as the second course of action is to avoid fracturing my leg. The edict - put no weight on your left leg. I guess we were pretty lucky that it didn't break with my fall. I also now have some pretty strong pain killers that I take around the clock. And the third course of action - involved a bone biopsy of my upper leg to verify this is bone cancer - as well as verify it is secondary bone cancer (breast cancer primary) and not primary bone cancer. The biopsy was painful. I won't lie but I was luckily quite sedated and have very little recollection of the procedure except when they woke me up while hammering in the needle into my bone. Right after that - I had a PET scan. This was for our fourth course of immediate action - determine if there is any other cancer in my body. It was a long test but fairly easy. This time there was no 'wild berry chalky flavored drink'. The drink was more like Crystal Light spiked with Lysol. :) Still - much preferred. No threats of vomiting involved.

So - for now - we wait for the results of the biopsy and PET scan to determine the future course(s) of action. We know that I will have surgery on Tuesday of this coming week to stabilize the weakened bone impacted by the cancer. If this is the secondary bone cancer - the surgery will entail putting a metal rod in my hip - down to my knee. The hospital stay will be two days, with therapy for at least two weeks. My hope is to return to work (at least from home) after that - although it will be with a walker or cane for a couple months.

Beyond that - we have yet to make plans until more test results are in - which I am hopeful will be Monday.  

While I never planned on continuing on with this blog - I will now reopen it to keep everyone informed.   Already - we are grateful to family and friends who have immediately rallied around us. Whatever the future holds - we know with the love of so many good people - we will be just fine. 

 

Final Post: Reconstructive Surgery

A year later – and we have hopefully crossed the finish line in regards to this journey.

Last blog post - I was healing from the second mastectomy and had the drains in place. As is my stubborn way, the drainage did not decrease very quickly and I was left with one for over 4 weeks. I return to work
with a beautiful little 'purse' I wore every day to hide the drain.

Toward the end of the four weeks - I was feeling very ill. I thought I had the flu as it was going around the office. I went down for three days and then decided 'I am better' and took myself to work. On the way to the office - I threw up after suddenly becoming ill. I didn't even make it out of my poor truck.

We started to worry that I had some sort of infection and went into see Dr. Agarwal. As I undressed for the appointment, Alan pointed out that I was covered with a rash. Come to find out - the Sulfa based antibiotic I was changed to caused a delayed allergic reaction. I was so relieved not to have an infection and was soon feeling better again.

With the drama - Dr Agarwal decided to pull the drain out. I again had a seroma (collection of fluid) that had to be drained by needle a few times. This time it was a bit more challenging as the fluid collected almost under the expander. A couple of doctors and a nurse had to work on draining it and still had difficulty.

Eventually - I finally healed and was feeling SO much better! I was working and feeling strong - and even went on a trip with Brittany to Seattle for her job interview. It was nice to walk around the town and not get tired out. I felt 'whole' for the first time in a very long time.

With the challenges I had with the recovery from the second mastectomy - the doctor advised us to move up reconstruction to October 1st. This time the surgery took place at the U of U hospital (due to space issues with the OR). Alan again stayed with me overnight in the room which always gives me a great deal of comfort. The Dr. warned us that we might have a longer stay with this surgery due to the need to move the latissimis muscle from my back, pull it under my arm and across my left breast to ensure proper blood flow for the radiated skin.

It took a while to find just the right medications. I was on Morphine and Lortab in intervals and was awake most of the night, just waiting for the next dose. In the morning, we changed to Oxycodone with Morphine and eventually just Oxycodone and that worked very well. I was able to eat, take my walk in the hall and was released that afternoon.

That said - pain was something that was challenging to manage. Alan, of course, ensured I was on a good schedule and that I took them at night which helped me stay ahead of the pain for several days. For whatever reason - I always think I'm ready to 'wean off' earlier than I actually am and that caused some problems but after about a week, I was down to non-narcotic painkillers and doing well.

The surgery required three drains on the left side this time - and none on the right. I was able to have one removed at the one week check-up and another was removed today about two and a half weeks later. The one in my back remains but I'm hopeful that we'll see that one come out sooner than we have in the past. I'm being very good and trying not to move my arm in repetitive motions. I plan to return to work next week (with or without drain) and then hopefully real life will resume.

As long as the surgery recovery continues to go well and we are pleased with the 'results' - this should be the last one. There will be some decisions related to nipple reconstruction which will either be a minor surgery with tattooing - or a trip to New Orleans for 3D tattoos. At this point, I want to feel better and get back to being myself. Travel for work without worrying about my stamina or immunities. Working out and getting back down to my goal weight!!

Many thanks for all your love and support!! I was carried along by my friends and family. I've said it before - and it remains true today- I've been forever changed by the experience. In some ways for the better - in other ways - just changed but am grateful for what this experience has taught me. I'm hopeful I can remember the lessons and not repeat them in the near future. This will hopefully be my final post.

Much Love and Gratitude. Nannette

Second Mastectomy and More Pathology

As we discussed - Alan and I made the tough decision to proceed with a second mastectomy on the right breast. A lot of factors went into this decision including the fact that the cancer in the left breast was larger/more advanced than we originally thought with a surprise second tumor. Also - the desire to not have to endure another round of chemo in the future was a factor.

It took a little bit to convince all of the doctors. My oncologist felt strongly that the risk of the surgery itself was greater than the chance of contracting cancer in the other breast - as having breast cancer in one doesn't automatically mean the other will too. In the end - we thanked her for sharing her opinion but we were determined to follow through.

Having been through the surgery before - we knew what to expect, knew what to pack and knew that I wanted Alan to spend the night with me in the room. Which - he graciously did. It was a long night of bells, alarms, medications and vitals but I did very well handling the pain and was released the next day.

We were both very glad to be home but nights were still challenging as my pain medications were still given every 2-3 hours. Alan faithfully charted them out for me and set the alarm...giving them to me very patiently. I will admit to trying to wean off the medication a little too fast - which caused a call to the doctor. We were able to get back ahead of the pain but that night we received a call from my breast surgeon with the pathology results from the breast tissue.

We were stunned to hear that breast cancer was detected in the right breast. It was only 2mm in size and thus did not show on any of the tests - MRI, Mammograms, Ultrasounds and PET Scans. Unlike the other side - this was not invasive carcinoma - but DCIS (Ductal Carcinoma In Situ). Which means the cancer hadn't yet started to 'invade' other cells. It was also a Grade 1 cancer - meaning not yet destructive/aggressive and DCIS is considered Stage 0. While we are still waiting to meet with the breast surgeon to discuss in more detail - we are pretty sure the early stage and the fact that there were no close margins to be worried about means that chemo will not be necessary - or even radiation. The mastectomy took care of the risk. Before we pat ourselves on the back for our wonderful luck and decision making skills- we'll see what the surgeon has to say on Tuesday but we are hopeful.

Now it is all about healing and the dreadful drains. I have two again this time and I, of course, hate them. They hurt, are uncomfortable and it is nearly impossible to put clothes over them. Last time it took 6 weeks to be able to remove the last one and I am doing everything in my power to not have it go that long again. Unfortunately - we aren't off to the best start. I went into the plastic surgeon to review the drain output log and was certain they would remove one of the drains today. The assistant - Dr. Blagg - reviewed the log and agreed the one looked ready to come out. Drain #1. Yay. He felt so confident that he started the procedure without Dr. Agarwal. As soon as he snipped the stitch that holds the drain in place...he said 'uh oh'. That wasn't the right drain. Typically the first drain to be removed is the top drain...but they'd labeled mine backwards and the bottom drain was the one that looked good to come out. He left to go get the doctor.

Dr. Agarwal came in and explained that he wasn't comfortable removing even the one drain because the drain on the top should be the first to clear up. So - they numbed me up and restitched the drain back in place...and I went home with both drains. I may have said one or two bad words in the doctor's office. Or more. Alan did remind me on the drive home that 'life isn't fair'...to which I may have said a couple more bad words...directed at him this time. Yeah - I get the whole 'life isn't fair' concept. I'm like the walking embodiment of the phrase. Good thing he loves me in all my cranky glory and actually just laughed in response.

So - what's next. Lots of healing time. Once the drains are out - the expansion will start on that side. We are thinking close to October, we should be ready for the final surgery - reconstruction. It will be quite extensive as well - with having to remove a muscle somewhere on my body to cover/protect the skin damaged by radiation to ensure proper blood flow. It will be just over a year since the beginning (August 2012)that we plan to close this chapter of our lives. :)

The Next Phase - 1 Test and 2 Surgeries

With Radiation over, we are looking forward to the next phase of this journey. 

My hair is growing back!  I'm please to report my eyebrows are both back - after falling out one at a time.  That was a good time. I again have eyelashes and the hair on my head is thicker.  It is still very short but now looks like a choice versus an unfortunate accident.   I'm looking forward to it no longer sticking straight up.  Unfortunately - the hair on my face is growing back and my complexion is no longer beautiful.  I feel like I'm 15 years old battling teenage acne again. 

My strength continues to improve. It feels good to be able to walk quickly again and go up and down stairs without tremendous impact. My desire for sleep continues to be all consuming with a need to sleep 10 hours every night.  The neuropathy is still there but the pain is much less.  It feels good to be able to stand for longer periods of time without it hurting and to wear high heels again.

We've met with Dr. N (Breast Surgeon) and Dr. A (Plastic Surgeon) to discuss the second mastectomy.  It was agreed that this was a good decision based on the cancer stage, the hidden second tumor and aggressive nature of the cancer cells.  There will be a follow up appointment (early July) to schedule the surgery date (end of July).  The last surgery - reconstruction will be around the month of October after sufficient healing time.  We plan to take a family vacation in between to enjoy the summer. 

Yesterday we met with Dr. L (Oncologist) and went over my numbers.  My white blood cell count is continuing to improve.  I'm just under 3000 with normal being between 4000 to 6000.  I am able to fight infection but this could explain my continued fatigue.  The only outlier continues to be my liver enzymes which are still lower than they should be.  This and an unexplained 10lb weight loss prompted the decision to do an abdominal CT scan to determine if I have 'fatty liver' and to rule out liver cancer.  This will happen next Tuesday and the results will be given on Thursday. 

I start my 5 years of Tamoxifen this week which is a maintenance drug designed to 'hook' onto cancer cells instead of estrogen.  This will in essence starve any remaining cancer cells by not feeding them the estrogen which makes them grow.  I'm not looking forward to this but understand the necessity. 

In the meantime, I'm feeling good and back to my old self (almost).  I enjoy working and being actively involved with my family life again.  It was wonderful to participate in the Komen Race for the Cure and celebrate Breast Cancer survivors and their families - as well as honor those who have lost the battle.  I was overwhelmed by the outpouring of love and support.  It was a sea of pink in every direction.  Amazing.

Radiation - So Much Better Than Chemo

Without a doubt, Radiation is much better than Chemo so far. 

Every Monday - Friday, I get up and ready for the work day.  I drive over to Daybreak for my 0800 appointment.  When I get there, I walk back to the radiation area and change into a hospital gown (from the waist up).  The ladies take me back and have me lie down on a hard metal table which is covered with a sheet.  It has the form of my upper body that was made during simulation.  Arms are placed above my head - right hand on left...and my head turned to the right. 

Once a week, they will do x-rays to ensure the machine is still lined up appropriately and that the radiation is going to the right areas. They line me to a couple laser beams which they put on the 4 tattoos (pin head sized) on my body.  They move me slightly with the sheet placed on the metal bed. 

After that - the machine will change position three times and radiate me.  It is as painless as an x-ray.  After 5-10 minutes, I'm up and out...getting redressed.  To date - there have been no side effects that I'm aware of...other than my skin being a little sensitive in that area.  Dr. Gaffney (radiation doc) meets with me every Tuesday to ensure I'm handling the treatment well. 

In the meantime, my other side effects are starting to slowly improve.  The neuropathy is much better.  My fingers/toes and hands/feet are only slightly sensitive - mainly in the very tips.  My hair is absolutely fascinating.  I swear it seems to grow every day - kind of like a chia pet.  It still doesn't look 'normal' but I'll take it.  The white baby 'fluff' is still on the ends but I can see my dark hair starting to come in - except at my temples which appears to be completely white naturally.  Who knew? 

In the meantime, my eyelashes and eyebrows have decided that it is their turn to fall out.  I've stopped trying to put mascara on the remaining four lashes because that only makes me look crazier.  If you look closely, squint your eyes and turn your head just right...you can see white baby eyelashes growing in.  I tried false eyelashes but by halfway through the day...they fall off or I take them off in annoyance.

I'm getting stronger every day and feel so much better than the day before.  I am back to being able to work full shifts and long days without major impact.  I am also able to walk up stairs without stopping to catch my breath at the top.  Alan no longer needs to slow down to accommodate my slow gait. 

Working out has been a little tougher but each day I can feel it getting closer to fruition.  I'm thinking it will be either this week or next that the routine will come back (or at least slowly starting to build at a slow walk on the treadmill).   My family is both happy to have 'Healthy Me' back..and a little remorseful.  'Healthy Me' wants to do things like clean the house, weed the flower beds and other various chores...but my strength requires that I can only instruct/supervise them.  They liked it better when my big activity for the day was watching TV.  :)

Alan and I decided to follow the sun this weekend and drove to Vegas in his new truck.  We spent Saturday by the pool in 89 degree weather.  To me - the sun now means health and feeling better after a very long, difficult winter.  I loved it!  I was careful to cover my bald head and radiation area...as well as apply 85 SPF sunscreen everywhere else. 

Spring is here!!  Or at least just around the corner...and I've never been happier to see it. 

Feeling Better - On To Radiation

It is amazing to reflect back and recognize how terrible I felt.  Each day now I feel so much better than the day before and with that I am incredibly happy. 

We are officially two weeks past the last chemo treatment.  I am able to walk up the stairs with minimal impact.  My hair is slowly growing in and resembles the hair of an infant.  I've been able to work 8 hours a day in the office.  I am able to walk around a store without panting. 

The only real issue I'm waiting to resolve, but has improved, is the neuropathy in my hands and feet.  After the last treatment - my toes and fingers were numb and cold.  It felt like a hammer had hit each finger and toe nail.  My sensitivity to cold and especially hot was off the charts.  Now - the tips of my fingers and toes are still sensitive and my feet/hands 'buzz' and can be painful but SO MUCH BETTER.  

I've taken to not wearing hats and wigs in public.  They hurt my head, make me sweat and just in general irritate me.  Now that I'm feeling better the surprised, confused looks don't bother me as much.  Children are cute as they try to understand why a girl would not have any hair.  Older adults smile knowingly and will give me 'pep talks'.  There are some younger adults that don't seem to know how to handle the situation or what to think.  Bless them - I'm happy they have not been touched by cancer yet in their lives. 

My check up with Legant went well - my blood counts are slowly returning to normal but my liver continues to struggle.  This is normal with Taxol so we are hoping time will resolve things.  I've had my two radiation simulations - one at Huntsman and the second at Daybreak.  Surprisingly the thing that bothered me the most in both situations is that they drew all over me with marker.  It makes me feel a little 'dehumanized' but in the big scheme of things - I'd rather be drawn on every day for 6 weeks than have another chemo treatment.  It is all about perspective. 

Radiation starts at Daybreak on Monday and I'll have treatment every Monday - Friday with the last session on May 3rd.  The first time period is at 1130 on Monday but luckily they anticipated my need to be at work and they made the rest of next week at 0830 with everything after that starting at 0800.  This will make it so much easier to continue working without interruption. 

Every day I am happier and healthier.  I'm slowly coming back to myself.  Thank you for all your love and support during this journey!!