Radiation & Incurability

To radiate or not to radiate

On the 13^th of February, I met with a radiation oncologist.  My expectations of this appointment were that the doctor would have reviewed my recent scans and my past radiation treatment file from 2010 before I met with him.  This did not happen.  Instead, I discovered this doctor was acquainting himself with my health history for the first time as he sat before me.  My husband commented later that it was most likely done this way in order to avoid his not being compensated for his time if I did not show up for the appointment.  I see this as a possibility though it did not soften my annoyance. 

He began by starting from the beginning, my 2005 diagnosis.  I was perturbed a bit that we had to start from the beginning.  All of that doesn’t matter now.  Not only was he unfamiliar with my case, he further annoyed me when he said “Tell me about your first diagnosis in 2005 when you were in high school”.  Really, I look that young?  Oh yeah, and I look like a model too.  This type of talk may have at one time flattered me, but no longer.  I know better.  Cancer and its treatment does not make someone look young and vivacious, just the opposite. I have seen myself in the mirror.

With my health history covered, he next wanted to see my scans.  I thought how could he give me a valid opinion today about possible radiation when he is so clearly unprepared to do so?  He did do something no other doctor has done.  He invited me to look at my CAT scans.  I have been curious as to what those scans looked like.  My oncologist in Chapel Hill has never looked at them so I have never asked her to show them to me.  The scans looked exactly like those I have seen on TV or on the internet with one exception.  The radiation oncologist pointed out a black area on my right lung. 

“That is showing where your lung has scarring from your past radiation”, he said. 

The lungs looked great otherwise.  Soon the image of the area where the 1.2 cm tumor is located was reached.  The tumor was not easily revealed, at least in that image.  He did not look any further for a better image.  I guess he decided he had seen enough.  He turned to me and said he wanted to speak to Dr. Z, radiation oncologist in Chapel Hill, before he would give his opinion.  He said that I had had a great deal of radiation in that area.  The tumor would need a lot more than what I have had already to produce the result we would want.   The appointment ended without his opinion on treatment with radiation which was good because he did need some time to think things over, obviously.  I left with the understanding that he would call me on Wednesday. 

I went home with doubt that he would recommend radiation treatment.  There was something about his demeanor and the way he said, “This is a difficult area to treat”.  I also thought about what I would do if he said, “Yes”.  Would I want to take the risk of losing the function of my right arm?  (My tumor is close to the right clavicle bone deep within my chest.  The radiation would pass through motor neurons responsible for muscle movement to my right arm and might damage them permanently.)  Ever since the radiation oncologist in Chapel Hill let me know of the possibility of this particular side-effect I had been thinking about what I would do.  I was leaning toward taking that risk if it was possible to completely eradicate the cancer.

Wednesday came and Wednesday went.  I know I am not the only patient that this doctor sees, but when he said, “I will call you Wednesday”, I expected a phone call.    Late Thursday morning, I called his office.  A nurse said she would contact him and then call me back.  Not too many minutes later the doctor called.

Somehow I imagined that I would be given a choice about my being treated with radiation.  I thought the doctor would call me and tell me about side-effects and what the likely hood the treatment would work with his opinion included. Then I would go home and discuss it with my family and make a decision about this treatment.  This didn’t happen.  I won’t have to make a decision.  The radiation oncologist I saw on the 13^th made that decision for me.  He will not treat me.  The possible side-effects, due to my having had radiation in 2010 to the same area, could be so severe that the doctor felt the risk of damage to me was greater than the benefit.  D---! But, I am grateful that my treatment is about what benefits me and not how much money a doctor can make by treating me.

Incurability 

This life I lead with metastatic breast cancer can be so discouraging.  I am constantly reminded on the internet and in my oncologist’s office of the incurability of stage IV breast cancer.  In talking to the radiation oncologist on the phone, the words that my oncologist has said more than once raced through my brain yet again, “Your cancer is probably in other places, but can’t be seen yet”.  Another way to put what he said is . . . even if we get rid of that tumor in your chest, you are still going to die of breast cancer.  This reaffirms how impossible my situation is.  It explains why once breast cancer metastasizes doctors don’t go after it aggressively.  The goal is stability or shrinkage, nothing more.  According to my oncologist, studies have shown that getting rid of the tumor(s) that can be seen doesn’t save lives-- sneaky horrible breast cancer cells.

I did not truly understand how deadly metastatic breast cancer was until my cells found their way to this point of no return.  I thought that if it ever metastasized to an organ, if it was caught early, there would still be a chance to save me or anyone else.  Apparently, almost 100% of the time, this is wrong.  Nor did I know that 30% of early breast cancer patients will eventually be diagnosed with stage IV.  No wonder so many bloggers with stage IV breast cancer are sick of Pinktober because it creates beautiful images and stories of early-stage breast cancer patients all smiling because they beat the disease.  There is nothing happy in the pink party for people like me.   

OK, so radiation is out for now.  There may be a need to use it in the future if the cancer grows in such a way that it is necessary for my comfort to reduce it.  At least I have Perjeta and Herceptin.  I hope these targeted therapies continue to do their magic. 

Life without Taxotere

Life without Taxotere for this three week cycle of treatment has been wonderful.  I have felt tremendously better. 

·        The neuopathy caused by this drug was starting to make my feet hurt when I stood for any length of time. My feet did swell and pain was felt, but there was a definite improvement. 

·       The scalp sores I have enjoyed (ha ha) at the end of week two after treatment did not appear.   

·        I did not feel anxious by the end of the first week from the steroids taken because I did not have to take those pills.  Those steroids were responsible for lessening any nausea symptoms and reducing inflammation.  My body did not like it.  I could not concentrate on any one thing for very long.  The drug made me feel like I needed to jump out of my skin to find relief from the anxiousness. 

·        Mentally I was and am so much happier.  I didn’t go through the horrible sadness I have felt after Taxotere.

·       My mouth feels so much better. No more destruction to the cells of my mouth. Yipee! I couldn’t taste food very well for the whole week after my infusion.  Salsa would set my mouth on fire.  No amount of milk could alleviate the pain.  Now eating is fun again.  My teeth had even begun to hurt. 

·        I still feel tired at times, physically weak, and sometimes I can’t figure out why I don’t feel right, but overall this cycle has been the best since I started treatment.  There are moments when I feel almost normal – well, almost.

·        Diarrhea still plagues me.

Tomorrow is infusion day.  That will be the time for herceptin and Perjeta to attach to the receptors on the outside of my cancer cells and stop them from growing and dividing. 

Thanks for reading.      

Herceptin/Perjeta ONLY

February 3rd  No more chemo, for a while anyway

Treatment #14 

Good news, no. . . great news!  Best news I have had in a long time.

 

CT SCAN REPORT

The chest tumor is still present.  This scan showed a 1.2 cm mass compared to the November scan that showed a 1.4 cm mass.  This report noted “stable” disease, but as you can see it says the tumor is “slightly diminished in size”.  YEAH!

Notice “no evidence of pulmonary mass”.   That means no lung tumors were seen!  Either they are so small that the CT scan did not pick them up or they are no longer there.  There is also the possibility that the tumors seen in May 2013 where not tumors at all.  They could have been scar tissue from some illness in my past.  Either way, nothing was seen on this scan!

  

Today, I have been freed from the grasps of chemo, at least for a little while.  Now I will only be treated with Herceptin and Perjeta which are targeted therapies and won’t affect my normal cells.  The news gets better as I don’t have to take any steroids or nausea medication with this regimen.  I will feel physically better.   Taxotere works, but it is such a harsh treatment.  I was almost to the point that I was going to ask for a break from it.  This news brings me such relief.

Dr. R. said this is a great time to try to do without the Taxotere.  Eventually I would have to stop Taxotere anyway because the body can only tolerate it for so long.  As I have said in a previous post, Perjeta is new having only been available to patients outside of clinical trials since June 2012.  The use of just Perjeta and Herceptin is also new at least to the doctors treating me.  I am hoping this new treatment plan will work because it has several nice benefits:  a full head of hair again, physically I won’t feel so ill.  I am bursting with happiness about this.  For the next three months, I am free of Taxotere.  Then I will have another scan and hopefully another 3 months of just HP.   

I spoke to a radiation oncologist today about the possibility of radiating the chest tumor.  Because I have had radiation in the past, there are possible serious complications that could occur if radiation is given again, the worst being loss of the use of my right arm.  But before those complications are discussed, my past treatment with radiation must be reviewed to see dosage used in order to see if it can be done at all.  I really want to have radiation because this could actually completely kill the cancer in that area.  The radiation oncologist said he would be fine with the decision “not to” or the decision “to” take this treatment.  The thought of not having cancer in that area any longer is such a strong reason to take the treatment.  Losing use of my arm because of possible nerve damage to the nerves along my neck above where the tumor is located is a strong reason not to, but cancer is way uglier and is a killer where the other is not.  I really won’t know the true risks associated with radiation until my next appointment which will be with the radiation facility that treated me in 2010.  (Date still yet to be scheduled.) They will review my history and will make their recommendation.

Another plus today…I only had to take Tylenol before treatment today.  That is two pills compared to the 8 that I previously had to take.  Also, no Neulasta shot needed to help my white blood cells bounce back.  That is a $4,000 shot out of the financial equation!

Three weeks ago, I had a MUGA scan for my heart function.  It was at 68% which is good and not only is that good, my heart function has improved. 

From the American Heart Association website. http://www.heart.org/HEARTORG/Conditions/HeartAttack/SymptomsDiagnosisofHeartAttack/Radionuclide-Ventriculography-or-Radionuclide-Angiography-MUGA-Scan_UCM_446354_Article.jsp

The test measures your ejection fraction, which is the amount of blood pumped out of the heart during each heartbeat (contraction). It’s usually expressed as a percentage. For example, an ejection fraction of 60 percent means that 60 percent of the total amount of blood in the left ventricle when it is full is pumped out with each heartbeat. A normal ejection fraction is between 50 and 75 percent.

It has been such a good day today.  I still can’t believe the report was so good.  Modern medicine is wonderful. 

Pleading with Cancer

Cancer . . . it’s me.

Come later

when my life

is more complete.

Let me see wrinkles

so deep

and skin

so thin

from elasticity gone.

I beg you,

stop

the lassitude,

the pain

Cancer . . . it’s me.

Let me see

my children grow

to be adults,

to be on their own,

that’s all I want.

Death too soon

is death unfair.

It takes from me

and from them,

too.

Memories missing,

pages empty,

lost to me,

by your bombardment,

hard to bear. 

Cancer . . . it’s me.

Stop this game you play,

out-smarting, outwitting, out maneuvering

us all.

Unfurl your madness

unfurl your mystery

so others will know

and early steps into the darkness

will cease

because your dress

will finally look different

than other dancers

and my body

will see you

and take back what is mine.

Scans show your control, 
reveal your destruction.

Each day

you grow.

Each day

I slow.

Cancer . . .  it’s me.

Stop hurting.

Stop growing.

Stop taking.

Stop stealing

my time.

Rationalization of death

does not exist.

No lessons learned.

Tragedy defines

my one day forgotten life!

Cancer . . . it’s me.

Chemo #13 Scans reviewed in 3 weeks

No news today, really.  The last three weeks were typical for side-effects.  My neuropathy in my fingers improved from my last treatment so that was a relief. 

Somehow I expected to have scans done before today and reviewed at this appointment.  I was jumping ahead too quickly.  The 3 week period I am now entering is the time for new scans to occur.  On February 3, those will be reviewed.  If everything is stable or if shrinkage is seen, a break from the beneficial but evil Taxotere, as far as side-effects go, may be the next plan for me.  Herceptin and Perjeta will act alone.  I am hopeful this is the case.  This scan really makes me nervous though.  I would really like a break from Taxotere.  Anytime I want something badly, the nerves can be troublesome.  It is not a happy drug as far as how it makes me feel.  If the two other drugs can do the job without it then that is a much better treatment option.  If my scans show growth, my treatment plan will change completely.  It is quite unsettling due to the fact that I am currently taking the best drugs available for my disease.    

For this appointment, the usual side-effects were discussed and lungs were assessed audibly.  All is fine.

This morning I had the 3 month MUGA scan to look at my heart function.  Herceptin can cause reduced heart function in about 2% of patients.  I have not had any problems so far and am hoping this will be the same today.  I will not know until my next appointment.

That is all for today.  Thanks for checking in on me.     

Pictures of my finished quilts.

T-Shirt Quilt

I finally sewed the last stitch and have completed my quilts.  The T-Shirt Quilt was the hardest since it was so big, and I couldn't lay it flat enough to sew properly.  I had no idea how hard it would be until after I started.  If I had the money, I would have paid a company to put it together. Those quilting companies use huge stretching tables and machines with long quilting arms to sew the fabrics together.  That would have made this quilt much more durable.  But, I suppose it has the charm of hand-quilting which my son may not appreciate until he is much older. The Star Quilt gives me much more satisfaction.  It is also hand quilted, but was much easier to quilt because I just sewed along each star pattern.  With the T-Shirt Quilt, each square didn't always have a pattern to follow.  I am very happy to have finally finished these projects.
Oh, and I recently started cleaning out my attic.  So much to do, so little time.

Star Quilt

Desolution of Smaug

My family and I went to a movie last Saturday night.  This is a once or twice event in any given year for us and a wonderful treat that we all enjoy.  We watched the “Desolution of Smaug” in an IMAX theater in 3D. The images were visually pleasing, and a few scenes made me feel I was in the scene with the characters, well almost.  The movie was packed with many impossible human feats throughout.  Those actually verged on absurdity, but with Orlando Bloom, as Legolus, and Evangeline Lilly, as Tauriel, bringing “don’t’ you wish you could be me” heroics into many of the scenes, the movie was quite fun. 

This post is a summary of the film with some of my opinions thrown in, but it is also written to give some perspective of the film through the eyes of a Stage IV cancer patient.  This is one of the changes that my new life of Stage IV “now what” encompasses.    I see and experience the world differently now. 

Be aware, spoilers ahead.  

As I watched the movie, I was struck how this story could be compared to what is happening inside my body.  For me, it became a story about fighting cancer.  In this movie, the hobbit, the dwarves, and the elves were the characters fighting against the cancer.  They were the drugs.  The orks and the dragon were the cancer cells. 

Throughout the movie, each arrow skillfully placed in Lagolas’s and Tauriel’s bow was done with such determination to kill the enemy that it made me think about how the drugs given to me every three weeks are working against my cancer.  For 8 months, the drugs have been working with the same intent as the elves’ arrows, to strike and kill.  The wood-elves have so much confidence and strength as they fight ork after ork with such astounding and unrealistic coordination and acrobatic feats.  Despite the absurdity, I silently cheered and marveled at the eye candy before me.  Then Lagolas weakens especially when he is forced to fight alone.  He finds blood dripping from his nose after he hobbles away from the two orks he destroys simultaneously.  He plugs on, in pursuit of Bolg, the leader and strongest of this group of orks.  I worry for Legolus as he chases this ork across the bridge into the Lonely Mountain where the dwarves have gone.  He rides across the bridge to the mountain on his white horse into the next film.  He is one of the drugs.  Facing a bit of a set-back, but resuming the fight just like my cancer drugs.  Mine are working, but unrevealed set-backs could be occurring.  The shooting of arrows into each cell continues.  But cancer will win, eventually.  The arrows will stop penetrating.  The cancer will build a shield, a resistance to a drug, or a new pathway for proliferation will be made that allows this army to march onward.  Hopefully, Lagolas will be able to continue the fight.  It would be disappointing to see him defeated.  It would be more disappointing for me to have to move on to a new drug because the drug now used has stopped working.

The main plot of the story involves a group of dwarves on a quest to retrieve the Arkenstone, Thorin Oakenshield’s family heirloom, and to rid the Lonely Mountain of the evil dragon.  A special stone, “you will know it when you see it“, is guarded by Smaug, a dragon.  He slumbers beneath and is surrounded by all the treasures that once belonged to the dwarves.  In my scenario, the Arkenstone might be the key to cure the disease. It remains elusive in the movie which is true in the cure of breast cancer, as well.  Bilbo, the hobbit, has great difficulty in retrieving the stone.  He endures verbal torment and life-threatening- physical aggression by the dragon as he tries to reach the gleaming stone.  The dragon was the cancer yelling, “Oh, no you don’t”.  The scene did leave me wondering if Bilbo had actually retrieved the stone without the audience as a witness.  When Thorin Oakenshield asked him directly if he had the stone, Bilbo nervously and hesitantly said “no”.  This hesitation could have been initiated by the dragon when he said that if Thorin Oakenshield had the stone, his heart would be corrupted.  Bilbo would not want this to happen.  This will be revealed in the next installment.

It looks bad for the dwarves along with Bilbo when they are captured by spiders in the Mirkwood Forest after Gandolf leaves them as he pursues another aspect of the story which for me was done poorly and left me confused as to why he left.  Nevertheless, he is left in a very compromising position to be dealt with in the next film.  Despite Gandolf’s warning, the dwarves lose the path through the forest and trouble finds them. Bilbo saves the day by using the ring.  He becomes invisible to the spiders and uses his sword to slash the life from them and then cuts down the dwarves from their web-spun beds. 

Bilbo at this point becomes aware of the ring’s gripping influence on him.  The ring’s power of the desire to wear it and the “its mine” obsession is symbolic of my need to keep living.  Never wanting to give it up, drawn to it, like a drug.  Because of this, I subject myself with the buying-of-time chemicals that for now make me sicker than the cancer. 

The two wood-elves, Legolus and Tauriel, arrive on the scene and destroy the remaining spiders. The scene made me feel like what happens to cancer patients later when cancer is disrupting the proper function of the bodily organ.  The cancer isn’t killing them yet, a different illness is threatening their existence.  For example, pneumonia occurring from a weakened immune system can kill the patient.  Here enter the wood-elves only this time they are in the form of an antibiotic that saves the day, killing the bacteria, the spiders, causing the illness.  These elves capture the dwarves as they think they are useless and greedy.  The dwarves escape the elves with the help of Bilbo who finds the keys and opens the doors to the prisons that hold them all because of his ring.  The two save-the-day wood-elves realize they hate the orks more and place their energies in fighting the orks, the cancer, thus becoming the drugs again. 

The action continues as the dwarves enter wine barrels and enter the rushing river escaping the fortress of the wood-elves.  But then the orks arrive.  The steady confidence and skill of the wood-elves fight back the orks and gain the upper hand once more just as the cancer can be weakened and the body starts to win again.

This is the same with any war.  You can kill much of the enemy.  Then cause them to retreat and to even stop the fighting.  In time, the old enemy can rebuild its army or a new enemy will appear.  A new strategy for battle must be put in place.  This is how breast cancer works.  It changes the way in which it divides and grows or it starts to resist a drug, making it so difficult to destroy.  It may sit quietly, sometimes, called stable, no evidence of disease, or remission, and then it grows again or appears in another place in the body with a new found energy.  The battleground, the patient’s body is losing.  Time is slipping past.  I don’t want to hear the words of my doctor say, I am sorry there are no more drugs to fight this disease.  It will happen.  I suppose I will be so sick it may be a welcome relief.  With all my desire to want to stay alive, there may indeed be a point where the pain and the suffering is more than I can take.  I don’t want to see that day.  The ticking clock sends me closer.

The movie continues when the dwarves are smuggled into Lake-town by Bard, a descendent of someone who almost defeated the dragon long ago.  Bard helps them only after they make a deal with him by paying him money.  Bard has a weapon against the dragon, a black arrow that can kill the dragon, but no one knows this but his young son. The dwarves are caught stealing weapons.  This of course is frowned upon by the town’s leader so they are taken as prisoners.  But, as luck would have it, the ruler of Lake-town accepts the deal offered by the dwarves that all of Lake-town can share in the wealth guarded by the dragon once Thorin Oakenshield, leader of the dwarves and King under the Mountain, retrieves it.  The dwarves are let go and continue on their quest.

Kili, one of the dwarves, is left behind in Lake-town.  He can no longer travel because he has been poisoned by an arrow embedded in his leg by an ork.  This occurred during the dwarves escape from the wood-elves fortress.  The orks find their way to the town in the never-ending search of Thorin Oakenshield.  In their obsessive search, the orks find their way to the home of Bard and the recovering Kili and the dwarves that stayed behind to tend to him.  They attack. Of course who should arrive, the heroes Lagolas and Tauriel. The love connection made between Kili and Tauriel compels her to stay to help him heal.  This was probably her true reason for leaving the wood-elves fortress instead of what appeared as an intense desire to kill orks.  Tears came to my eyes as I watched Tauriel take a weed brought to Kili by one of the elves.  She grabs the weed, grasping it tightly in her hands then smiles and says,”I can save him”. 

I want desperately for someone to say they can save me.  But the logical side of me knows this will not be my reality.  Tauriel does indeed save Kili.  She chants in a made-up language and places the wonder weed on the wound.  I wish a simple chant and a weed would so easily wipe-out my sickness.

At the Lonely Mountain, Bilbo and the dwarves open the entrance to the sleeping dragon.  Bilbo is sent to find the Arkenstone that Thorin Oakenshield so desperately wants to have in his procession.  Bilbo awakens the Dragon unwillingly.  The dragon eventually is on its way to destroy the local town.  In my scenario the cancer is on its way to spread to another part of the body.  The dragon is flying to the town where Kili recovers and where the black arrow, unknown to the dragon, exists.  The black arrow can kill the dragon.  The cancer is unaware that there is another weapon to be used against it. 

The movie ends abruptly.  Now we wait for the final movie in this trilogy.  Most likely another year till the battle continues.  Then the dragon and the orks, and any other dangerous beings symbolic to me of the cancer cells, will be placed in remission.  Evil again appears in 60 years with the continuation of the story in Lord of the Rings.

So, now I am left hoping I will see the release of the third movie.  In the meantime, my cancer will hopefully remain quite for a long while.  The war will continue and things will be thrown at me, just as things were thrown at me with 3D special effects frightening me.  I am hoping to live this next year as the hobbit does, when not on this quest, in his quiet amazingly clean little house with the battlefront remaining quiet.  Who knows?  Maybe it is possible.

Chemo #12/ Scans to be reviewed Feb 3rd

December 23, 2013

“You are doing great, I am told”, said Dr. M.

Dr. M. is a doctor I have not met before.  He was filling in for my regular oncologist.  During my conversation with him about my side-effects, specifically about my worsening neuropathy (the tingling, numbness sensation felt in the fingers, hand, feet and toes caused by Taxotere), he let me know that the team discussed my case and that if my next scan shows continued stability of my cancer then Taxotere may be pulled from my treatment plan.  Radiation may then be introduced to treat the tumor surrounding my esophagus.  Today, despite my complaint about my neuropathy, he would not be reducing the Taxotere until the results of my scan are observed.  Getting rid of the Taxotere would be a huge side-effect reducer and would make my quality of life better.  The radiation scares me a little because I worry about swallowing issues that may be caused by this treatment.  At the same time, I am excited about the possibility of this treatment change.  The radiation will be able to kill cancer cells in the deeper layers of that tumor than the chemotherapy is able.  Shrinkage - that would be a fantastic word to hear.   

I feel my hope gaining momentum.  That scares me.  This hope could be squashed by the result of this next scan.   Yeah, I might lose a little sleep over this one.

I also inquired why my hair on my head, although thinly, is growing back. “Was this an indication that my normal fast-dividing cells were growing resistant to the Taxotere”? I asked.

Dr. M. could not answer my question.  Apparently, no one understands why this occurs.  Some women, a very few, lose very little hair.  And some women like me, see hair return.  He did say this was not an indication that my cancer was not responding to this drug.   

Report of scans to be reviewed, new treatment plan to occur, and heart function test to be done, six weeks from now.  

Side-note:  I saw my old oncologist today.  He greeted me as I was leaving his Wilmington office where I receive my Neulasta shot.  (This shot helps my bones rebuild my white blood cells that the chemotherapy diminishes.)  He was in a happy mood as he quickly moved in to hug me.  I was happy to see him, but when I left my feelings of disappointment in the way he handled my changed diagnosis back in April reappeared.  I don’t want to feel this way, but if your doctor doesn’t do what you feel he should have done, I guess this is the only way I can feel.  It makes me sad.