Radiation: More Frightening to Think About … Than to Go Through

Something I should have mentioned in earlier blog posts, is that radiation can be a big part of the treatment plan when dealing with Metastatic Bone Disease.  It’s very helpful in treating a specific spot or area as it should kill the cancer in that spot.

Not long after I started my original Xelada/chemo treatments for Metastatic Bone Disease, I had a course of radiation.  This treatment was done while I was taking the Xelada.  Although, I wasn’t “thrilled” to be going through another treatment, I was optimistic about the radiation helping to kill at least part of this cancer that was covering my bones and trying to take over my entire body.

This course of treatment did not last as long as the radiation treatments I went through while battling my original breast cancer.  This time, I only had to have around ten treatments.  It was centered in the area around my lower spine and upper hips.  Apparently, this area of my body was on the verge of causing me a great deal of discomfort.

The only side effects I had from the radiation were being fatigued, much more tired than normal.  Of course, during this time, I was having, more or less, the same side effects from the Xelada/chemo, so it was hard to tell which one was causing most of the fatigue.

Early in my diagnosis, my doctor explained that radiation could and would probably be added to my treatment plan on and off, depending upon my symptoms, scan results and my own personal discomfort level.  It’s been more than a year now since I went through this last round of radiation treatments.

If you’ve never had radiation, know that the treatments are not that difficult to go through.  It’s really more of an inconvenience, as you have to be there every single day, so you have to plan your life around it, but only for a short time.

The very first time I was preparing to start radiation, it was a frightening thought to me.  Again, I had really good doctor’s and a wonderful care/treatment team through my oncologist and radiologist.  The first appointment is for a consultation with the doctor/radiologist.  The radiologist explains everything that will take place, step by step.

Next, it was time to get set up with the treatment team.  I laid on the table and it seemed to be lots of measuring on and about me and lining me up with the various lasers and computers.  (I’m sure that’s not the right terminology of the equipment and machines).  Once they have all the exact measurements recorded, they gave me two tiny tattoos, so they knew exactly where to line up the lasers for treatments each time I came in.

Every time I came in for treatment, I laid in the same exact position, the treatment team lined up all my coordinates with the machines and my tattoos.  Most treatments only took around 30 minutes.  It actually took me longer to drive there and find a place to park.  It became a routine, day after day.

Of course, as time went on, my skin became more and more sensitive, very red in appearance and somewhat painful.  These treatments were focused on my chest area where my breast cancer had been removed.  This area is very sensitive to begin with, so it’s no wonder that the skin burned so easily.  I was prescribed several different topical creams that were very helpful in treating the side effects of the radiation.

Back to radiation with Metastatic Bone Disease.  I had fewer actual treatments this time, so I never really developed, what I felt was, severe visible skin damage.  As I said earlier, the biggest problem I dealt with was fatigue.

I would advise anyone going through this to ask as many questions as you need to.  AND, it’s always a good idea to take someone with you, “another set of ears,” to listen and taking notes along with you.  When you are the patient, your focus sometimes gets stuck on one thing and you sort of tune out the ongoing conversation, so having that extra person with you is very helpful when you are trying to absorb so much info at one time.  Also, helpful, is to keep a list going at home of any and all questions that you might have.  Sometimes, I even got extremely organized and typed/printed out my questions, so I could hand my doctor a sheet of paper with my thoughts and questions more organized.  This made my doctors’ visits much more productive.

Most importantly, I sometimes felt very alone while laying on the table.  It’s very easy to get depressed and feel sorry for yourself, it’s totally understandable.  However, I found it was better for me to really work on these negative thoughts and feelings of self pity.   These are the times that you “count your blessings! Our blessings always out weigh any of the difficulties we go through with treatments…

 

 

 

 

Chemo Meds and All the Other Medications and Vitamins In My Treatment Plan

My Xelada treatments have continued on for over a year now.  I am still on the treatment plan of taking two, 500 mgs. in the morning and two more in the evening for two weeks and then having one full week off.

In addition, my Oncologist has me on a few other medications.  I now get Vitamin B12 shots every other week.  This was originally every week, with a goal of getting them once a month, but I’m just not there yet…. Special note:  I get these shots at home – my husband gives them to me.  I think it’s the highlight of his day, when he gives me a shot … ha!

I have an appointment every month with my Oncologist.  They do a full lab profile prior to my actual appointment with the doctor.  After the doctor’s visit, I go down the hall to the Infusion Treatment Room and received my scheduled “injection” of Xgeva.  I refer to it as an injection as it takes a bit longer to administer than a regular shot.  (And, YES, that’s lots of medications that start with an “X.”)

For the last five years, I received shots of Prolia several times a year.  With the new chemo treatments, my doctor wanted to “up” the strength of the medication to help my bones.  To explain, the chemo can really do some damage to your bones.  As it goes through your body to attack the cancer cells, it can easily cause unwanted damage to good cells, mainly my bones.  The Xgeva is supposed to help in keeping the outer shell of my bones healthy and strong.

A bit more help to keep my bones healthy comes by taking the 1,000 mg of Vitamin D every day…. AND, I have just recently added 50 mgs. of Vitamin B6 each day.  The Vitamin B6 is supposed to be helpful in calming down the constant dry, cracking skin of my hands and feet.

As time has gone on with my treatments, I have become more and more aware of the side effects from the Xelada that build up or accumulate the longer I take the chemo treatments.   So, for right now I normally start off my 14 days regiment of Xelada feeling pretty well.   However, by the end, or last 3 days, of the regiment, I begin to feel more tired, a bit run down.  I’ve learned to pace myself.  I try to “sit down” at least 30 minutes every afternoon.  Sometimes, I have to just give in to being tired.  On those days, I actually lay down and take a nap!  Rest and sleep is essential to your health taking any chemo.

TIP:  As the chemo meds and all the other medication and vitamins I take can be a lot to keep up with every day, I recreated my own pill/medication organization.  I bought a one week, 4 times a day pill organizer.  I printed off my own labels for each day of the week, Sunday through Saturday, “Sunday morning, Sunday night,” and so on.  This makes it very easy to keep track of what I need to take and when.

ANOTHER TIP:  I have a calelndar/planner that I write each chemo treatment by cycle number in it.  When I started my chemo, I recorded on a Monday, “1/8 in the morning and 1/8 in the evening.  That meant that it was my first or number 1 cycle and I took 8 chemo pills at that time.  As my number of pills has decreased over the last year and the number of treatment cycles I have been through has increased, my entry looks more like, “18/2 in the morning and 18/2 in the evening.”  Meaning, I am on my 18th cycle and I take 2 chemo pills morning and night.  I always take my planner to my doctor’s visits.  My doctor and I always compare what cycle we each show me to be on.  It’s really helpful and important to me to be organized and informed in my treatment plan.

I try very hard to stay upbeat and go about life as usual on a daily basis.  However, on those days that I am feeling down, maybe not feeling too well and/or feeling sorry for myself, I REMIND myself that I am lucky, very lucky, in fact.  The medical advances for treating Metastatic Bone Disease are getting better every day.  This makes me feel hopeful that a cure is out there somewhere ….

pill dispenser

Starting Chemo Treatments … AGAIN!

After another gathering at my Oncologist’s office, it was time to get down to fighting this Stage IV Cancer or Metastatic Bone Disease.  I was MAD, kept asking myself, “why is this happening to ME … again!”

Although, I forced a smile on the outside, I was fuming on the inside.  In addition to that, I was scared.  I was scared that as this new prognosis seemed to come out of no where, that my life was on fast forward and I couldn’t stop it.  I was terrified of doing chemo again – “what would  happen this time – would it help or actually hurt me.”  There were so many unknowns at this point that I had to have many hard talks with MYSELF.

As the first treatment drew closer, I started a journal.  Lots of people had suggested it, I didn’t really think it would help …. but, what could it hurt.  I put into writing what I was feeling each day.  I poured it all onto the pages of the journal.  In addition, I tried very hard to write down something that I was thankful FOR, things that I am blessed with.  At the beginning, this was hard to do. However, as the days went on and turned into weeks, finding my blessings wasn’t as hard.  Putting all this in writing was a good thing.  I began to feel emotionally much stronger as I kept at it.  I, also, drew small pictures and/or symbols on my pages.  It was sort of like Bible journaling.  I drew crosses, hearts, angels, wrote out words, like “love, blessings, power, strength and so.”   Some of these drawings got more elaborate as I kept at.  Looking back, I can automatically tell what my mood was in when I worked on my journal that day.  If the colors were bold and dark, my mood wasn’t at its’ best.

So, the day came that it was time to take the chemo.  I WAS lucky.  Five or ten years earlier, my life expectancy would have been pretty dim.  BUT, there are new cancer treatments developed every day, so there is great hope.

My doctor was going to start me on a very aggressive chemo in “pill form.”  Taking the chemo in pill form will give me some freedoms that I would not have with traditional infusion chemo treatments.

My very first treatment cycle started with e taking a high dose of Xelada.  I took 4, 500 ml BIG tablets every morning and 4 more every night for 14 days, for a total of 4,000 ml each day.  The first day or two went ok with really no side effects to report.  Moving into the end of the first week, I had bouts of my stomach being upset.  My skin was becoming more and more dry, especially my feet and hands.  Midway through the second week, my energy level was dropping, my stomach had me running back and forth to the bathroom.  AND, by the end of the cycle, days 12, 13 and 14, I was beginning having problems eating,  and just looking at food in general.

My last few days were a Friday, Saturday and Sunday.  Luckily, I had a friend at church who was a chemo nurse and she offered several very helpful suggestions.  She made sure that I understood that I did NOT want to get dehydrated.   She had me eating Jello.  It’s cold and it sort of just slides down and is full of water, so even though it wasn’t a cure, it was something.   It got me through the weekend.   In addition, I didn’t try to eat a “meal,” instead, I sort of just grazed as I felt I could.

On Monday morning, we called my Oncologist and they had me come right in.   She prescribed  some medications and made various suggestions to help deal with side effects.  I already took medication for acid reflux, so my medication for that was increased.  I, also, received a prescription for what is referred to as “magic mouthwash.”  This helped my mouth from becoming so extremely dry and helping to keep sores from forming” in my mouth.

I was reminded that adjusting to the Xelada is a “trial and error” process.   We have to keep working with the dosage to find one that is going to work for me.  I REALLY wanted this to work as my other option would be to get another port and return to tradition infusion chemo treatments.

The GOOD NEWS was that I had 7 days off from treatments to rest and, hopefully, allow the side effects to diminish or hopefully disappear completely.

I rested, tried to eat better and do as much as I felt like doing without “over doing” it.  So, my next round of Xelada was scheduled for me to take 4, 500 ml tablets in the morning and “3” of the same tablets in the evening.  As the chemo medication accumulates in your system, the side effects can build up quicker with each cycle of treatment.  In my case, the dryness in my hands and feet was getting worse.  I had to stay on top of my eating by trying to closely manage my preventative medications.  I tried to remember to take the evening meds right after dinner.  This gave the meds time to settle in my stomach.   When I forgot and took the meds right before bed, I almost always ended up with a horrible problem trying to sleep, having extreme acid reflux and many times sitting up in a chair most of the night.

As the various cycles of Xelada went on, the dosage was decreased several times, but the side effects seemed to be getting more intense, especially my feet and hands.   My dosage went down to 3 tablets in the morning and 3 in the evening … then, 3 in the morning and 2 in the evening.   I finally landed at 2, 500 ml tablets in the morning and 2, 500 ml tablets in the evening.  So my schedule was taking the chemo meds for 14 days and then having 7 days off, then do it again, and again ….

My stomach issues settled down a bit, but the problems with my hands and feet continued to be a big problem.   So, Aquafor became a part of my daily routine – actually multiple times a day.  I “slathered” a huge amount on my feet every morning and put on spa socks unless I was going out somewhere.  I repeated this every night and sometimes, mid day.  My hands pretty much got the same pampering treatment.  I coated my hands in Aquafor and put on spa gloves several times a day and even slept in them.

As I write in my journal, I always try to find “something” to be thankful for.  During these months of medication trial and error, I was always thankful for my doctors and their never ending efforts in trying to help me get through this and maintain a good quality of life.

 

How I Got Where I am Now…

Eight months ago, in December 2016, I thought I was about to be free of the follow-up schedules and tests from my “fight” with Stage III Breast Cancer.  I had fought hard, I did everything and then some to rid my body of Breast Cancer. I had a tough series of chemo treatments, including the dreaded Adriamycin, known to those going through Breast Cancer as the “Red Devil.”  I had a bilateral mastectomy, even though the cancer was completely in my left breast (I didn’t want to go through all this again!).  Waking up from my surgery, I found that the cancer had spread to my lymph nodes and they were all removed.  It was back to the infusion treatment room AGAIN for another aggressive series of chemo and then, 36 radiation treatments.

I was burned, scarred and had lost all my hair and still knew I had to keep moving forward.  I had a lot to live FOR.  My youngest grandson (at that time) was born while I was going through treatment and I am so thankful that I was able to be there.  I already had 5 other grandchildren and I couldn’t imagine not being there to watch all of them grow up, I kept those types of thoughts close to my heart as went through each treatment… you do what you need to do to get yourself through it. I had twin boy/girl grandchildren entering Kindergarten while I was going through treatments.   Those two were very observant and puzzled by my hair becoming shorter and shorter and then, my wig.  It was quite some time before they figured out I was wearing a wig and we had a bit of fun with it when I made the “big revele.”

Continuing on my treatment plan, I had blood work done every 3 months to keep track of my cancer markers.  Yearly Bone Density tests were added to my regiment of preventative treatments.  I took the recommended Femara for 5 years daily – never missed one pill.

That brings me back to last December.  I was excited that I was having my final checks and blood work before my doctor put me on the yearly followup plan.  Feeling optimistic, I felt like I had made it through the darkest journey of my life.  My doctor, thankfully, insisted that I have a routine Bone Density test as I was about 4 months behind having that test due to a bad bout with Shingles the previous spring.  So, I went in for the Bone Density test and was feeling really good, as all my previous Bone Density tests showed great improvement in the strength of my bones.

I had Christmas on my mind, how I was going to get it all done and see all the family that was now spread over several states.   That night, the phone rang-it was my Oncologist.  She was right to the point, “I know this is hard news to comprehend, but your bone density test showed that my bones were extremely damaged, thin and showed large areas of cancer metastasized “on” my bones.”  She went on to explain that we had to move fast, to figure out where this stemmed from and how bad it is.  She also asked about why I had not complained about all the pain I must be in?  I did have aches and pains, sometimes really bad, but I thought it was just normal aging and I didn’t want to give in to it – guess I should have complained about it.

So there I was, ten days before Christmas and my whole world had crashed …. again.  I was overwhelmed with this news, anger, asking “WHY” and what do I do now.??  My husband was sort of shell shocked himself.  Thinking back, I think I cried all night, I really didn’t know what else to do.

The next morning, my husband and I talked and decided that we/I didn’t want to ruin Christmas for the entire family.  My oldest daughter had 5 children and my youngest daughter had the now 5 year old little boy and 2 1/2 year old twins.  Christmas should be a joyful time with all the children in the family.  So, I set up the first of my many tests and scans to come to start on December 30, four days “after” Christmas.

We had Christmas with our family here in Oklahoma City, then drove to Dallas to stay with my brother and his family for one night, we did not tell them either.  Then, it was on to Austin with our younger daughter and her family for a wonderful Christmas day and Santa activities.  I managed to keep my sadness and fears bottled up inside me, as I knew this could be my last Christmas with my family.

My husband and I waited until we were going to head home before we shared the bad  news with my daughter.  Of course, we didn’t have all the answers or information that we needed at that point, so we just shared the information about the tests and scans I was going to have.  We left there on a sad note, knowing what was ahead of me when we returned home.  Of course, we shared the bad news with our other daughter and my brother, but asked to “not” make this public knowledge until we knew more and I had more time to figure out how I was going to handle this latest dose of bad news.

The tests started:  I knew the drill, or thought I did.  I had a CT-scan and Nuclear Bone Scan.  The Nuclear Bone Scan did not show any good news.  My bones had cancer everywhere – my entire spin, neck, skull, hips, legs, ribs, shoulders and so on.  BUT, there was a bit of good news.  The CT-scan showed that the cancer had NOT spread to my spinal cord or any of my organs.   This was really GOOD NEWS.

We gathered in the Oncologist office to go over the results of the tests and scans so far.  I think it was here that I felt like the end of my life would be sooner than later – “my clock was ticking.”  My doctor went above and beyond explaining everything she could, including the fact that this “metastatic bone disease” WAS a Stage IV cancer – there is NO CURE.  Those words hit HARD. 

More tests were needed:  I had 4 MRI’s simultaneously – my skull, neck, spine, hips. It took 2 hours and 40 minutes.  My head was pounding and my body was in horrible pain after laying there that long.   After that fun, it was on to the bone biopsy.  The purpose of the bone biopsy was to determine where this cancer came from.  I was VERY sore after the bone biopsy.  It was the first time I had to give in and take pain meds …. and I slept a great deal for several days to recover.

Test results from the bone biopsy showed that the cancer ON my bones (not IN my bones) stemmed from my original breast cancer.  So even though I did everything humanly possible to rid my body of the horrible breast cancer 5 years earlier, some very tough radical cancer cell traveled through my body and set up camp ON my bones.

In the midst of all these tests, I had many, MANY more blood tests to check my cancer markers.  Some of these blood tests were sent off to other labs in other parts of the country and it was determined that my blood cancer markers did not work in managing my cancer risks.   So, even though I had Stage IV cancer, my cancer markers look great!  It is pretty rare to have this problem with Blood Cancer Markers, but it happens, “lucky me.”

In February, we traveled to MD Anderson in Houston with the blessings of my Oncologist.  The same conclusions were found at MDA and they also agreed with my Oncologist’s proposed treatment plan.  So, I wanted to go home and be at home when I started my new treatment plan.

So, home we went ……