It's Been Awhile...

 

I want to start out by thanking everyone for the outpouring
of love and support throughout this journey and, particularly
over the last four months, since my last blog entry.
Due to some unexpected turn of events, I’ve been unable to
keep up with my posts, as much as I would have liked to
thank you all for your patience and understanding. Your
notes of love and support (all the wonderful cards and posts
on Facebook) mean so much and help to brighten my days.
 

My last post was a while ago, back in early February after
we received the news that my metastatic breast cancer had
moved beyond my femur and was now also in my hip and
buttocks (aka my “ass cancer”) and were preparing for a
visit to Boston to see renowned Breast Cancer Specialist
Dr. Eric Winer. So I’ll start from there and fill in with what
has happened since then.
 

13FEB15 | BOS, Dr. Winer and Friday the 13th

As Alan was unable to attend, a very good friend came with
me so it was a “girls only” Boston trip. We left SLC on the
12^th and arrived in Boston to the aftermath of multiple blizzard
conditions. On the recommendation from a friend and Boston
native, we enjoyed a delicious dinner at Legal Seafood dining
on clams and the biggest crab legs I’ve ever seen. What a meal!

The following morning thanks to another kind Boston friend,
we were personally chauffeured from the hotel to the front door
of the Dana Farber Cancer Institute so we didn’t have to worry
about getting a taxi and trying to navigate the traffic – a blessing
given the growing pain in my hip and leg. 

What a gift our visit was to have my case reviewed by Dr. Winer and get his opinion on treatment options and any insight he might have about my diagnosis. The goal of our meeting was to (1) get a handle on managing the pain in my hip and leg and (2) figure out how to stop the cancer from spreading.
 

We first met with Dr. Stover (a fellow of Dr. Winer) and went over my case history, discussed how the cancer has mutated (now showing spindle and squamous cells), and different types of pain block options. Next, we met with Dr. Winer and talked about his plan for pain management and basic philosophy for treatment. He said we need to get my pain meds in order – basically I’m on too much break-through meds (Oxycodone) and not enough long-lasting meds (Oxycontin), so we’ll make adjustments there. For treatment, Dr. Winer recommended concurrent chemo (Xeloda) and radiation therapy and we also discussed other options if the Xeloda didn’t work (Xeloda is an oral antimetabolite chemotherapy used to treat metastatic breast cancer that has stopped responding to Taxol, Taxotere, and Adriamycin).
 

I asked Dr. Winer how much time he thought I had and I loved the way he responded: “Well, how much time do you think you have?” I said about two years, to which he replied, “Yes, your intuition is right. Based on what we have available to us today and where you’re at, I would say about two years.” He then went on to mention that I know my body the best and to stay in tune with what is happening and act quickly if I notice anything changing. Although it was “Friday the 13^th” it was a good day and a good visit.

14FEB15 | “Heart Attack”

We returned to SLC the following day, Valentine’s Day. I came home to a “heart attack”: I was literally surrounded by love!!! I didn’t even know what to say. I’m humbled and grateful and love my husband, family and JetBlue family so much.

Over the weekend Alan and I joined some close friends and spent the weekend together at a cabin in the mountains. We stayed up late being silly and having fun. We decided that we all needed to take a trip together to a warm and relaxing tropical place. Good times and good laughs.

17FEB15 | I’m an “Unusual” Case

The following Tuesday, we met with Dr. P to talk about the visit with Dr. Winer and go over his recommendations for pain management and treatment. Since the beginning, this journey has been filled with unexpected twists and turns, so it’s no surprise that I am an “unusual” case when it comes to the way the cancer has progressed and metastasized. While it is in the bones and soft tissue (butt, lungs, etc), for some unknown reason it’s not showing up in my bloodwork. I suppose it’s the inherent nature of cancer to be mysterious and unpredictable.
 

You know that saying “the wheels of justice turn slowly?" Well, so do the wheels in the world of medical insurance. We were anxious to start on the dual chemo and radiation treatment plan recommended by Dr. Winer but had to start with just radiation for the first two weeks while waiting for approval for the Xeloda from the insurance company (it was finally approved 10 days into it). SO disappointing and not how I wanted to approach my treatment.
 

Speaking of radiation, because of where the tumor was in my hip and leg (I had to lie on my side directly on the tumor), the radiation treatments this time around were literally the most excruciatingly painful thing I’ve ever experienced. EVER. To make matters worse, what should’ve been only 10-15 minutes of agony, ended up to be more like 40 minutes to an hour. The pain was so bad, even the morphine I was administered didn’t help. Each time I would have different technicians – some would take longer than others and some were new and inexperienced; and we were even told that there was something wrong with the machine. Dr. A was NOT happy when she heard how long each session was taking and immediately took steps to make sure it never happened again. As it turns out, the problems were due to technician error, so Dr. A made certain that I always had the same technicians from that point on. I remember thinking that I wished the cancer I had wasn’t the kind that caused so much pain, but unfortunately that is not to be.
 

MARCH 2015 | Xeloda - Stable and Doing Well

March was a good month. I was able to do two rounds of the Xeloda (oral chemo) together with the radiation therapy as Dr. Winer recommended. Each day I felt stronger and stronger – I progressed from the wheelchair, to a walker, and then to just a cane, and I was even able to return to work for a bit. I was also working really hard to get off of the pain meds, something I was determined to do. It felt good to start feeling like myself again.
 

We also decided to embark on that tropical adventure with friends. We were going to St. Lucia and made plans for a one-week trip in mid-April before starting round three of the chemo and radiation.

 

18-25APR15 | Trip to St. Lucia

I was getting stronger and almost completely off of the pain meds by the time we left for St. Lucia (our first time ever going on vacation with friends). Such a great feeling!  On the way to St. Lucia, Alan and I stopped in NYC for one night. We stayed at our favorite boutique hotel in the city (The Gem in Chelsea), caught a great Broadway show, and enjoyed the most wonderful Italian dinner at Alan’s favorite gluten-free Italian restaurant, Bistango.

The next day we continued on to St. Lucia. Our friends had gone ahead of us a few days prior and upon arriving realized that there was no way I would make it through the crazy long twisty-turny bumpy drive to the resort (Sandals Grande). They were so kind and arranged for a helicopter to take us so I wouldn’t have to endure 2 hours of bouncing about in the bus. We decided to plot together and make it a surprise for Alan. The only catch was how to convince him to pack our swimsuits in the carry-on bag (which would come with us on the helicopter, while our luggage would not – it would go on the bus and arrive hours later). For those of you who know Alan, he wasn’t satisfied until I told him WHY we needed our swimwear in the carry-on.
He’s impossible to surprise but at least I tried.

The helicopter ride was quite fun and got us to the resort in no time (12 minutes compared to 2 hours). We instantly got changed and headed down to the pool. We were pretty hungry so Alan got us some salads from the poolside bar. We barely started eating when out of nowhere came a torrential downpour. As we scrambled to get out of the rain, I missed some steps and nearly fell (the stairs weren’t marked). I went one way and the salad went the other way into the pool. We found shelter under a little thatched hut, together with a homeless man (although security made him leave after a bit).
 

Although I was almost completely off the pain meds at the start of the trip, the pain began to flare up again in my hip and leg. We attributed it to the flying and the change in altitude. As the days went on, the pain grew increasingly worse and I started to lose mobility and feeling in my toes (left foot) and they began to point a bit (like a ballerina en pointe). The only thing besides the pain meds that would provide any sort of relief was being in the pool (as the physical properties of water – buoyancy, viscosity, hydrostatic pressure – helped minimize the weight placed on my hip/leg while also providing resistance and support). In the pool I could really stretch out, float, and as funny as I probably looked, do “underwater Twister” to help relieve some of the pain. 
 

Aside from the pain, the Sandals Grande resort was beautiful and relaxing. There was the most delightful little English pub that we immediately fell in love with. We spent our afternoons at the pool where I discovered my new favorite drink: The Piton Sunrise (white rum, coconut cream, orange juice, banana, grenadine; aptly named after the gorgeous Piton Mountains for which the island is famous for).

25APR15 | ER Visit to Jamaica Hospital (Queens, NY)

The return trip home from St. Lucia required an overnight in NYC so to keep it simple, Alan and I just booked a hotel near JFK.  I had all of my pain meds with me and was doing okay on the flight, but by the time we got to the hotel, the pain was so bad I knew I wouldn’t make it through the night. By now, it was around 1:00am and the nearest hospital was Jamaica Hospital in Queens.
 

The Jamaica ER experience was beyond dreadful and something literally out of a horror movie. The facility was tired and rundown; with what seemed like crazy/homeless people in the waiting room. The service level was non-existent and any interaction with the staff was abrupt and on the verge of hostile. You got the feeling that being a patient was an inconvenience to them and you pretty much had to be critically ill near death for anyone to even notice you. While I can certainly appreciate the ER triage system, it was obvious that tempers were wearing very thin in the waiting room.

Alan and I sat there waiting, and waiting, and waiting, and I tried to distract myself from the growing pain with the cute new purse I had treated myself to for this trip. After what seemed like an eternity, a new nurse appeared at the admitting desk. No “Is there anything I can help you with?” or “Have you been helped yet?” Rather, she unsympathetically said (with a brusque NY Queens accent): “Do me a fayvah and get that THING (referring to my purse) outta the way!” That pushed me over the edge and I began to cry. Crying because I was tired, frustrated, and in so much pain and I just needed someone, anyone, there to help me. That seemed to shake them up a bit and they finally got me into a room with a table so I could at least lie down. Unfortunately, it was an OB/GYN room (women only, and the only room available with a table at the time), so they wouldn’t allow Alan back there with me (although eventually we were able to sneak him in). The conditions were terrible: there was blood on the floor (really!), and everything was tattered, worn, and water stained.  When I was finally seen, I wasn’t actually treated – I was simply given a prescription (which we had to get filled at a pharmacy elsewhere) for just enough pain meds to get me through the flight back to SLC. We left the ER around 3 am, and by the time we got back to the hotel (after getting the prescription filled) we didn’t even sleep. We just packed up and got ready to head to the airport.
 

When we finally got home to SLC, the pain had gotten so bad I ended up in the ER again that night (Daybreak IHC). Two days later, because of all the pain medication I was back on again, my body couldn’t handle all of the toxins in my system and I ended up going back to the Daybreak IHC ER, this time by paramedics. They assessed my condition and recommended that I be immediately admitted to Huntsman.
 

01MAY15 | May Day

Happy May Day (from Huntsman Cancer Institute)! Beautiful flowers and ribbon decorated pole trees mark the beginning of warmer weather and more family time fun for all.

Due to ongoing pain and toxicity issues I was admitted to Huntsman. I’ve reached the max dosage levels for the pain medication I’m on due to the combination of my body building up resistance to the meds and the increasing pain in my hip and leg. So, we decided it was time to implant an intrathecal pain pump, which should help better manage the pain.
 

04-08MAY15 | Pain Pump

On May 4 (day 8 in the hospital) I had a pain pump implanted between the muscle and skin of my abdomen on my left side. The pump is programmed to slowly release medication via catheter over a set period of time and deliver the pain medication directly to the area in the spine where the specific pain receptors are located. It’s really quite remarkable how it works. The pain pump system also has a bolus dosage feature that allows me to give a self-administered booster dose when I have break-through pain. 
 

While the pain pump certainly has its benefits in terms of pain management, one of the side effects is that it also desensitizes everything, including the bladder. This makes it difficult to completely empty the bladder, which leads to the need for a catheter, then bladder infections and antibiotics, and potentially toxicity (due to the build-up of the meds in the body). Fun times, but I was glad to at least be making some progress with managing the constantly increasing pain.
 

09MAY15 | Mother’s Day

My Mother’s Day gift was being able to leave the hospital. I felt better now that I was home but still faced some big issues. Although the pain pump is helping, the medications still need some modifications and my urine output is still a big concern as is my oxygen levels (too low so I was sent home with O₂ canisters). Just glad to be home after 10 days in the hospital.

 

11-17MAY15 | My New Fashion Statement

I began physical therapy for my foot and started using a brace for my leg and a wheelchair to get around. Pain continued to be an issue, but my oxygen levels have improved to the point where I would hopefully get off of the O₂ tanks. I was also getting stronger and stronger with the physical therapy. My physical therapist had been very helpful and we even talked about the possibility of going back to work for an hour or two sometime soon.
 

The brace I was wearing for my leg wasn’t the correct size but it did help my foot from flopping about. I loved that it helped but grew tired of it after a while. Shoe shopping with the brace was certainly an interesting experience – I had to buy 6 pairs of shoes (2 pairs each of the same style but in different sizes – a pair in a larger size for the foot with the brace, and a pair in my normal size for the foot without the brace) in order to end up with 3 different options of shoes to wear. Shoe companies should really consider selling left and right shoes individually.
 

21MAY15 | Months, Not Years

Because of the side effects of the pain pump, I had to have a Foley catheter, which resulted in ongoing bladder infections and rounds of antibiotics. Between the discomfort of the catheter and the cumbersome urine bag I had to carry around, I just wanted it gone.
 

My appointment with Dr. P that day did not go well. Based on the results of a PET scan I had earlier in the month, she had bad news to share: a change in my diagnosis to months, not years. This was Dr. Ps first attempt at breaking this news to us, and she “sandwiched” it between other peripheral issues. She didn’t want to tell us the bad news, and we definitely didn’t want to hear it, let alone talk about it. We moved on to discuss the possibility of removing the “ass cancer”, and also the increasing pain from the bone cancer. Every time I’ve gone in to have the pain pump filled, they’ve had to increase the dosage because it’s so incredibly painful and it just keeps getting worse.
 

On the 25^th of May, we received a follow up call from the Daybreak ER regarding my bladder infection and test results. It was the Klebsiella virus this time, and required IV antibiotics for 7 days because the oral antibiotic I was on wasn’t strong enough. Fortunately the IV could be administered from home so I didn’t have to be re-admitted to the hospital. I did have to go in to put the IV in and they also changed out the catheter while I was there, but as I said earlier, I was so done with the catheter and wanted it out all together once the IV antibiotic sessions were finished. To add to the complications, IVs were starting to become an issue because it was getting more and more difficult to find good veins.
 

28MAY15 | Last Resort

We met with Dr. P a few days later to discuss what my treatment options were at this point. I had met with two different surgeons a day prior to my appointment with Dr. P, to discuss removing the tumors with the main goal of providing some much needed pain relief. Both surgeons, Dr. Antabach and Dr. Jones shared with me that the tumors were deemed inoperable - this was due to the size and location of the tumors.
 

Up next. What about radiation? Another no. Radiation has already caused so much damage to muscle and tissue, along with the damage caused by the tumor itself. In addition, I’ve already had so much radiation that I would be at risk for radiation poisoning (one can only sustain so much exposure.)

She also said that the tumor was the reason for the fallen foot (where it is sitting on a nerve) and is the reason for the increasing pain (and not the result of the placement of the pain pump, which we were concerned about since it was located on the same side as the tumor). I asked about amputating the foot and/or leg to relieve the pain, but again the recommendation was no, amputation is not an option. The surgery itself would be such a big operation and too much for my body to take, and that the location of the tumor was too high in the hip.
 

So that left us with IV chemo as the one and only option. The last resort. That being said, Dr. P believed we would only see 5-10% of meaningful benefit and that she didn’t want to give us false hope. I asked her if the chemo would help with the pain and she said only if it could shrink the size of the tumor. Again, she was laying all her cards on the table and said she didn’t expect that I would receive any pain relief from the chemo. I asked what types of chemo she would consider if I opted to pursue it and she recommended Gemcitabine, but warned that the biggest side effect would be lowered blood cell counts which meant decreased ability to fight infection, and nausea (and we all know how I feel about throwing up).
 

Given the more aggressive pace of the disease, Dr. P said it’s all about treating the symptoms now. We discussed the possibility of doing a mutational analysis to match for an investigational drug (that would take about 2 weeks), and also a port placement because my veins are shot and if we did go forward with the chemo, it would be better to have a port for lab work and to administer the drugs. We scheduled the port placement for early June and got on the calendar for chemo, but I wanted to discuss as a family before we made a final decision about moving forward with the chemo.

It was so unexpected to be told “months, not years” after all we’ve been through and that there was only a slim chance for hope with chemo as the only option at this point. We’ve been going around and around the topic so much, asking so many questions, doing everything the doctors recommended in order NOT to die, only to be dealt this hand. It felt like being fired from life.



16JUN15 | The “H” Word

After getting the port installed the week prior, I was scheduled to start the 7-week round of chemo on June 16^th. Like chemo treatments before, we thought it would be a routine chemo visit, so it was just me and my Dad. We were in the room getting started on the pre-treatment lab work with the nurse and she said “Why are you doing this (meaning chemo)? What is your end goal? You know that chemo is a 7-week period.” Confused, I said “I’m doing this because this is the only option left for me.”

Then she said the “H” word: Hospice. WTF. By now, Dr. P had come in. Still stunned, I straight up asked her: “How long do I have?” “2 months.” was the reply. “Chemo is not the right path for you anymore.” It was very emotional and we definitely weren’t expecting to hear that. What do you say? There are no words. 

So this brings us to the present. We’re talking through the reality of hospice, what the next 2 precious months will be like, and all of the things that must be discussed as the end of the journey approaches.

… and finally … The Celebration of Life.

I was asked if I had any words of wisdom for my family and friends so I share this with you - Waste NO TIME!  Do what makes you happy. And, cherish every day that you have.

Love you to the moon and back!!

In honor of me, Alan wrote my name on the street a short distance before the finish line of the Huntsman 140 bike race that he participated in on June 20, 2015.

What on Earth? Another Strange Diagnosis

My last post shared the decision to remove myself from the clinical trial.  Boy – was that the right decision.  My health almost immediately started to improve.  I’m eating well again, gaining weight (mixed feelings about that one) and overall feeling like myself.  Then – the next thing decided it was time to start– even if I didn’t feel ready. 

Since the surgery – I’ve had increasing pain in my left upper butt cheek.  Glamorous – I know and easy to attribute it to the pain of healing from surgery.  Every night – I would rub Icy Hot into the sore spot before climbing into bed.  One night – I realized – there was a rather large lump there.   “Poof – Out of Nowhere”.   The pain was also getting more difficult to manage.   I was able to get into the Orthopedic Oncologist (Miles) and be seen the very next day.  An x-ray and MRI were performed and a few days later a biopsy.  Although very unusual – the breast cancer has chosen to metastasize in my butt cheek.  Alan and I are lovingly referring to it as my ‘ass cancer’.  J  Another case of – ‘What on Earth’ to add to my memoirs.    Due to all this – the cane has come back and I walk with it wherever I go. 

Last Week – Alan and I went on a week vacation to Key West.  An absolutely beautiful, laid back and colorful island.  The temperatures were in the mid-70’s and we enjoyed eating the locale fare, sun bathing on our little piece of sandy beach.  Alan was able to go on a dive which he enjoyed – as well as snorkel.  It was a great experiencing – getting away from the noise of daily life and just being  a couple.  There were lots of great conversations on how we navigate this new phase – followed by lots of hugging and maybe some tears.

 It was my first experience taking the airport wheelchair from curb to gate and gate to curb as we traveled.  I now have a bit more empathy for those with disabilities that need this service.  As a bit of a control freak – it was challenging not being ‘in charge’ of what others were choosing to do with my body.  Some were very courteous/thoughtful – others were oblivious.  I think they were race car drivers in a former life.  I’ve learned that asking permission or consulting with the person in the wheelchair is an important part of the service.

This week we have a litany of doctor appointments on Tuesday– which is good as the ‘ass cancer’ appears to be getting larger and red/angry.  We’ll get that checked out.  Also – we’ve been given the privilege/gift of having my case reviewed by a renowned Breast Cancer Specialist – Dr. Eric Winer at Dana Farber in Boston this Thursday, February 13th.   Alan is unable to attend but I have a very good friend flying out with me.  It will be a bit of a girl’s adventure.  He’s has all my patient history from all the various facilities – and I’m curious to hear if he has other treatment options or if he might be able to provide a bit more insight related to my prognosis. 

Otherwise – all is well.  There is a lot going on and an incredible amount of learning along the way.  Love to all of you.  We couldn’t do this without your constant love and support. 

Goodbye Clincial Trial - Embracing Now

It has been a very long couple of months.  I’ve thought about writing and updating everyone on this blog but the fight has been challenging both physically and emotionally.  It was important to me to be in the right place mentally to share the experience.

The clinical trial proved to be very difficult.  The medication quickly took its toll on me.  I was vomiting frequently and diarrhea was a constant companion.  Despite my best efforts to eat regularly, take prescription medications to offset the symptoms – I was simply put - miserable.  Vomiting constantly and without warning has given me the badge of honor of ‘christening’ almost all the toilets in my house – I still have one to go.  Also – I have come up with a new eating plan which is basically…would you be alright throwing this up?  Meat is off the table…and recently…rye bread.  I typically love rye bread and Alan made me some toast on a rough morning.  Unfortunately – I lost the battle and it came back to visit.  Let’s just say when I closed my mouth and realized I was chewing on a rye seed…it went to the top of my ‘no’ list.  J The horrifying realization caused another onslaught of throwing up.  When I shared this whole experience with Alan - we had a bit of a chuckle over it. 

Despite this – my progress with my leg continued to improve and I moved past my cane and am able to walk with a minor limp.  It does get worse as the day goes on but still – it is nice to see the improvement.  

As Christmas came – my vomiting/diarrhea worsened.  I started to skip taking the clinical trial medications and the symptoms lessened.  I finally made the decision that I was done with taking these pills.  The Doctor was very excited about the documented life extension that this medication provided but for me – the extension of life without the balance of wellness was not worth it.  At my next appointment in early January – I officially withdrew from the study.  Since then, my wellness has been improving.  Diarrhea is completely gone – and the vomiting has become more intermittent.  I believe I can get that under control by figuring out my pain management methods.  My sciatic nerve causes me pain especially at night but my body cannot tolerate prescription pain killers very well – even in conjunction with anti-nausea medications.  So – Aleve and sleeping pills work better for now. 

I am happy to say that I’ve been able to more consistently put in hours at work.  It is nice to see everyone and have things be ‘normal’ in some capacities.  Every time I am there – I do want to jump in and start going like a mad woman but I have loving but straightforward peers/leader who explain the need to take it slow. 

Christmas was a lovely time with family.  Quiet and joyous…it was nice to have everyone in attendance and see the joy on the faces of my nieces and nephews.  My kids were doting and again took care of the vast majority of the holiday prep.  I have truly been blessed with some sensational kids. 

Emotionally – that is the journey that is most private and difficult to share.  Let’s say that when you feel lousy…you can start to inhabit some dark places.  My main focus is to think about the here and now…and the powerful memories I can make with loved ones.  My thoughts can quickly turn to what life will be like for them when I am gone and all the precious moments I will miss at least in my physical form.  The battle has been to fight back those thoughts and concentrate on the beauty of now.  The chatter of my niece.  The smile on the faces of my kids.  Quiet moments with my sweetheart.  Sharing laughter with friends.  Life is beautiful and precious…and I plan to eat it up with both hands. 

Test Results and the Start of Medications

The past couple of weeks have been dedicated to medical tests, receiving the results and starting the various medications necessary for my treatment. 

I met with Dr. Stinett and received my first medical infusion of Zometa.  This medication is meant for individuals with osteoporosis.  It will help strengthen and heal some of the damage to my leg from the cancer and surgery.  While patients for osteoporosis receive this infusion once a year – I’ll receive it once per month.  Once started, the infusion only lasted 15-20 minutes but was reminiscent of having chemotherapy.  I was glad to get in and out of the chair so quickly. 

The next day I woke up achy and feeling ‘flu-ish’.  Unfortunately, I had to pull myself together and climb out of bed as it was the day for my CT scan.  Drinking the necessary Lysol and Crystal Light flavored drink was not fun – but I was able to drink all 32 ounces as dictated.  The test was quick and painless.  That afternoon/evening; however, found me throwing up for about 3 hours.  It was a possible combination of the drink and infusion…but not very fun at all.  Anyone that knows me well knows that I ABSOLUTELY HATE vomiting.  I recovered and the symptom went away as quickly as it came on.   Not being mobile and having to throw up in a bucket – traumatic for me and my care takers.  Poor Britty and Dad!! 

A couple of days later, there was a Bone Scan which was very simple to complete.  They had a nice picture of a fall scene on the ceiling and I was able to make shapes out of the clouds as I lay quietly for about 30 minutes.  The scan indicated some issues with both knees so they followed the scan up with an x-ray of both knees. 

The following week, we received the test results.  In addition to the cancer we knew about in my upper left leg, right lung and one lymph node under my right arm – there was proof of cancer in my right leg just above my knee.  While it is not the best news – it also wasn’t the worst as I am pleased it is still fairly confined at this point.   We received the first shots of Faslodex – one in each butt cheek.  It was surprisingly painful and felt like they were pushing syrup through the syringe.  This doctor appointment lasted for an eternity as it was necessary to finalize the approval for the clinical trial medications.  We arrived at 0900 and left the office at 1230 only to have to return for more blood work at 1430 (to determine the absorption rate of my first dose of the pills).  I was tired, shaky and nauseous by the time the day was over and my hopes for spending a couple of hours in the office were dashed.  We went home and I slept well.  The second dose of medication had to be taken in the middle of the night due to the need to be 12 hours apart from the first dose. 

The next morning – was rough.  I woke up to more vomiting.    I think it is safe to say that the clinical trial I am on is the real deal and not a placebo unless someone has a very sick sense of humor.  I spent the morning on the bathroom floor, wrapped up in a blanket.  I texted Alan and he canceled an appointment with a psychologist I had that morning.  I texted Dad and he helped me get anti-nausea medication in me and back in bed.  Have I mentioned – I hate throwing up?  This weekend has been all about slowly changing the medication time frame (an hour at a time) so that I can ensure I eat up to an hour before the dosage of the pills and then again an hour after.  I don’t eat a lot but I eat often which seems to keep the nausea under control.   I also will take an anti-nausea pill fairly quickly if I start to feel sick.  With this under control – I now am just fighting fatigue and diarrhea.  It was tough but all in all – I think I’m winning this particular battle.  I just had to learn how to play by the rules dictated by the drugs. 

I’m slowly doing better with walking with the cane.  I’m able to take the stairs up and down one leg at a time with cane in hand instead of having to step on the same step with each leg before moving on.  It isn’t easy and I have to concentrate but I’ve been able to do it.  I went to work a few times for a max of 2 hours a day but the frequency is still sporadic.  I am hoping to find a good rhythm in the near future. 

Meanwhile, the family is pulling together to create Christmas.  The tree is up and most of the gifts are bought.  I recommend not going to Target on a Saturday while driving an electric cart…it was insane.  J  Luckily the girls and Alan were there to be the legs and go up and down the crowded aisles that I couldn’t fit through.  I am loved and pampered everyday by my loving family.  Friends shower me with sweet messages and check in frequently.  Life is good. 

Radiation: Complete

I’m happy to share that radiation is complete after two weeks of treatment.  Every morning at 0830, my Dad and I would arrive.  It was always very quick and typically painless.  My femur would sometime ache afterwards and as time went by – my fatigue level increased until I’ve been sleep almost 12 hours per day.  Sometimes that would even not include a couple hour afternoon nap. 

The first weekend after treatment, Dad and Alan went hunting as they finally drew out for the Elk Hunt after almost 13 years.  My sister came and ‘babysat’ me and it was kind of like a sleep over after 30+ years.  We shared a room throughout our childhood and teenage years – it was kind of fun to do it again.  She made sure I kept my medication schedule through the night and drove me to my radiation appointment.  Nathan (my brother) took me to my last appointment as I still can’t drive (due to medications) and need assistance walking as well as getting in and out of the car. 

Right now, I am making the transition from walker to a cane.  It is a little scary as it doesn’t provide as much balance support but it is very nice to not have the awkward mechanism to get around – especially at night in my bedroom – trying to make it to the bathroom in the dark.  J

It took a while to get my pain medication regulated but we did finally figure it out.  While I don’t love being on the medication as much as I am, it has helped with the bone pain from the cancer as well as the pain from surgery.  I’m slowly starting to wean off the medication but have been advised by my surgeon that it may take up to a month to be completely off of it.  Right now, I take four morphine pills at 8pm and another 4 pills at 4am.  I was able to discontinue the 3 pills at noon about 4 days ago.  I still have the oxycodone for break through pain but that is rare these days.  Can’t wait to get rid of the foggy medication brain and start functioning again but am incredibly grateful to have the pain under control after so many months of having to deal with it night and day. 

This week we have an appointment with Dr Stinnett and I am anticipating an infusion of a medication to make my bones stronger and help stop the spread of the cancer cells in my leg.  We also have two appointments for tests – a bone scan and another CT scan.  I anticipate the maintenance drugs will start the beginning of December after the injection they gave me to ensure menopause has been in me for several weeks.  That was a requirement of qualification for the drug trial.  I’ll also be looking for a physical therapist to assist me with learning how to balance and strengthen my new reinforced leg. 

Otherwise – I’m just resting and taking each day at a time.  I wish the process for healing would go a little faster but again am learning humility and patience.  It must be I need a little extra help in this area – as I keep having to learn this lesson.  I have my good days and my bad days.  The good days typically are those that I focus on today and those things in my control - like getting stronger and exercising.  The bad days are those that I focus too much on the future and those things I can’t control.  Each day is a gift and I’m happy to live it, with my family and friends, to its fullest. 

Thank you all for your love and support.  The cheerful notes, phone calls, flowers and small gifts – they make me smile and feel so loved. 

Our Current Battle Plan: No Chemotherapy for Now

The current plan is determined (but will continue to morph as time goes by) :  No chemotherapy in my immediate future

We met with Dr. Stinnett (oncologist) and Dr. Miles (orthopedic oncology surgeon) on Tuesday.  Each appointment went very well.  They applauded my recovery and tell me that I’m doing very well after such a tough/invasive surgery.  They did up my dose of painkillers to see if I can’t do a little better with managing the ‘breakthrough pain’.  I’ve been advised that I may be on my lovely, decorated walker for about 6 weeks.  Good thing it looks so pretty – thanks to my adorable nieces. 

Stinnett discussed the reports on the PET scan and the bone biopsy.  He confirmed that the cancer in the bone is secondary breast cancer. It looks a little different than the primary breast cancer did…but the main things are the same.  Not exactly the news we wanted – given that this means stage 4 and incurable but this was diagnosis we were expecting.  The PET scan has indicated one small/measurable spot on my right lung and several smaller unmeasurable spots as well.  I also have one lymph node under my right arm that has cancer in it.  The assumption is that all of it is metastasized breast cancer and we’ll treat accordingly.

Speaking of treatment – we discussed that the main focus of treatment will be on the cancer in my femur/bone at this time as it is impacting my ‘quality of life’.  We have the metal rod in place to ensure no breaks (which were imminent otherwise).  They scraped the bone for the cancer they could.  Now I will be having radiation on the entire femur/hip to ensure that any cancer that may have been dislodged by the rod being inserted will be radiated.  As I already mentioned, for now - treatment for the lung and lymph node is ‘wait and see’.  The overall approach is to ensure quality of life which is why eliminating bone pain is our primary objective. 

On Wednesday – we met with Dr. Avizonis.  She is a character and I quite like her approach and quirky sense of humor.  She is no nonsense but also has a great bedside manner.  She will be doing 10 treatments – 1 treatment per business day for two weeks.  She stated that the radiation symptoms should be much less impactful than it was with breast cancer.  The burns should be less painful etc – mostly due to location and duration. 

Besides radiation treatment – I will be changing to a new daily ‘cancer pill’.  I had been taking Tamoxifen but with the assurance from some blood test that I am in menopause for sure (as well as its obvious failure at restricting the cancer from growing again)…we will be changing this drug and seeing if I can qualify for a clinical trial to also have a ‘booster’ test drug combined with it.  This new hormonal drug – is how we will manage the cancer in other places.  On Thursday, November  11^th – I will be going in for an IV drug which will limit the spread of the bone cancer. 

Ultimately, I feel good about the appointments and the plan.  I also feel hopeful (for the first time since the ER visit) with the prognosis – as Dr. Stinnett stated that it would be years at this point and not months before this disease ultimately wins.  He mentioned that he has two ladies he treats in a similar situation as mine and they are at 7 and 8 years of survivorship past the Stage 4/Metastasized cancer diagnosis.  I recognize that is not the norm – but love the sound of the possibility. (Norm is more likely 4-6 years or according to some internet research – chances are 22% for a 5 year survival rate) So with the disease spread being fairly ‘small’ throughout my body at this time – we won’t be doing chemotherapy but will hold it in our arsenal of potential tools down the road. 

I recognize that this conversation – is not comfortable or easy for anyone.  The purpose of this blog has been – from the beginning – to share this journey with my loved ones as well as with other cancer survivors.  It has my hope/fears/difficulties…and everything in between.  Please know – I have not given up hope and do plan to fight hard.  But – I will also be honest/truthful…and realistic.  There will be times when I will be angry, happy, in pain, sad, in denial or at peace.   I’ve experienced any and all of these emotions – within minutes of one another sometimes.     You will be privy to the ugly moments as well as the good moments.  It is therapeutic for me…and helps proactively answer the ubiquitous question – “How are you?”.   

I continue to be in such awe of the love and support I’ve been receiving over the past week.  It has humbled me in so many ways – and helped me stay strong during some of the difficult times.  I love you all.   Thank you so very much and from the bottom of my heart.