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.

Lymphedema explained

*Note:  Taxotere made my lymphedema worse.

My appointment with Dr. R. went well yesterday.  My fingernails  are no longer infected.  What a relief. But, my lymphedema is rearing its ugly head.

Lymphedema in my right arm, hand and fingers first appeared in 2010 about a month after my surgery to remove a local recurrence in my skin along the inner right side of my chest.  At that time, one lymph node was taken from my armpit to determine if the cancer had spread.  Cancer in the breast typically spreads to the under arm lymph nodes first before it spreads anywhere else.  (A small percentage of lymph fluid drains to the nodes in the middle of the chest.  That is where my cancer spread.)  The first indication that something was wrong was the development of a golf ball sized mass at the incision site under my arm where the lymph node had been removed.  This swelling was drained of clear fluid three times before it finally subsided.  In 2005, when I had my bilateral mastectomy, two lymph nodes were taken from that same area of my armpit.  My lymph nodes for both surgeries were cancer free.  As a result of this additional lymph node being removed, the drainage pathway for the lymphatic fluid was further compromised resulting in my lymphedema.

LYMPHEDEMA EXPLAINED

Here is a description of how fluid gets trapped in the limbs of the body.

The lymphatic fluid is carried by the bloodstream first.  Once it reaches the capillaries, this fluid penetrates through these membranes and spills out into the surrounding tissues providing those cells with necessary nutrients and gases so the cells can function properly.  This fluid in the tissues then picks-up wastes from the cells, dead blood cells, toxins, and cancer cells from the tissues.  About 90% of this fluid enters back into the blood stream.  The rest enters the vessels of the lymphatic system.  As this clear yellowish fluid travels through the lymph vessels, it enters lymph nodes along the way.  These nodes filter-out various harmful or not needed components from the fluid in order to prepare it for entry back into the blood stream.  If the lymph nodes detect a pathogen, it sends lymphocytes (white blood cells) into action.  Lymph nodes also trap and destroy cancer cells, but the nodes can become overwhelmed by cancer just as it cannot control all bacterial and viral infections. 

Lymphatic fluid travels in one direction.  That direction is always toward the subclavian vein in both the right and left side of the neck where the lymphatic fluid reenters the bloodstream.  There are one-way ducts throughout the lymph vessels so there is not back-flow of the lymph fluid.  Since the lymph fluid is not pumped by the heart, the body uses other methods to do this job.  The skin provides compression and aids in this movement of lymph fluid.  When swelling occurs, this no longer functions properly.  Compression garments help by applying pressure against the small vessels near the skin and aids in the fluid movement. There are also smooth muscles along the lower larger lymph vessels to move the lymphatic fluid. 

When there is damage to the lymphatic system, as there is when lymph nodes are removed, there is a disruption in the flow of this fluid causing fluid to accumulate.  This is lymphedema. The worst type of edema is called elphantitis.  This tropical disease damages the lymph system and is horribly disfiguring.  My lymphedema is considered mild, thankfully.  My hand is different in appearance from my left hand and when my fingers are swollen there is a tightening of my skin that was mildly painful in the beginning, but none of that prevents me from doing any activity.  Although there is swelling in my arm, it is not as noticeable as the swelling in my fingers and hand.  When the lymphedema first appeared, I could press on my wrist and top of my hand with my fingertip and it would leave an indention on my skin where it had been.  The pitting would remain for less than a minute and then disappear.  As time moved on, this pitting became less and less and I found I didn’t need to wear my compression glove and arm sleeve to help control the swelling as much as I had been.  I was so happy to see veins visible on the top of my hand again and my fingers no longer were as swollen.  But now I again can see the pitting in my hand when I press a fingertip into my flesh.  I have started wearing my compression glove again.  Perhaps this is just a flare up as my oncologist today said that some of her patients have experienced.  I sure hope so.  It is such an ugly reminder, along with my separating fingernails, of what hell my body is experiencing.

If you experience swelling in the arm or hand after removal of lymph nodes, see you breast surgeon for a diagnosis.  If it is lymphedema, compression garments are essential.  A physical therapist can do lymphatic drainage techniques to aid in removal of the excess fluid which may help.  That person can also teach you how to do it yourself which is easier on the wallet.

LOSING BLADDAR CONTROL

My oncologist and I have spoken in the past about my losing control of my ability to stop urine from leaving my body when I cough or sneeze.  This problem began for me after beginning treatments of chemotherapy for this third diagnosis of cancer.  Recently, I have found that when my bladder is really full, I am experiencing leakage.  Dr. R. explained that this can happen when women get older.  It can be the result of having children and losing estrogen as the body moves into menopause.  That is me, had children and now in chemo induced menopause.  Dr. R. said, when I had spoken to her previously about this, that the chemo drug, Taxotere, could be a factor.  If it worsens, I could be seen by an urologist for testing to determine if there are other causes.  In the meantime, I could do those Kegal exercises that doctors tell woman to do when they are pregnant to strengthen the pelvic floor muscles which may help prevent the urine from leaking out.  This is just another fun bodily malfunction from the life and times of me.

POSSIBLE ELIMINATION OF TAXOTERE

I also discussed with Dr. R. about possibly eliminating Taxotere from my treatment.  At a previous appointment, I mentioned to her about my discovery on the internet of women explaining that Herceptin or Herceptin and Perjeta were the only drugs used in their treatment.  This occurred because their tumors were appearing on their scans as stable or their tumors were classified as NED (no evidence of disease).  Dr. R. had said we could discuss this further at a later time.  Since, I have bypassed the 6 month mark I again asked if this was an option for me.  She said that it was, but before any decisions were made she would first like to discuss this with the other 5 oncologists on staff.  Perjeta is fairly new, released for use in June of 2012, so most of the oncologists in her practice have not had much experience in determining the best time to consider removing Taxotere from this particular treatment regimen.  (only 30% of breast cancers are Her 2 neu)  She is going to ask the team if and when they might consider treating me with Herceptin and Perjeta only.  I am excited about this prospect due to the side-effects of Taxotere.  I did ask, if I stopped Taxotere could I ever go back if it is discovered that the Taxotere was the drug  keeping my cancer stable rather than the Her 2 neu targeted therapies.  During my last discussion about stopping Taxotere, I thought she said I could not return to that drug.  Today it became clearer that what she meant was another regimen would probably be offered because the Herceptin and Perjeta would have shown to be ineffective and there are so many other good treatment choices to keep my cancer under control.  But if it became necessary we could consider Taxotere again in the future. 

As we continued our discussion of possibly discontinuing Taxotere, Dr. R. said that studies have shown that some woman have stable tumors for long periods of time with only Herceptin used in their treatment.  She said of course for me or anyone there are no guarantees, but she felt that it was a good possibility that my cancer will continue to respond to Herceptin based on how I am responding presently.  If she had to make an educated guess, she said she would say that the Herceptin and Perjeta are the drugs that are keeping my cancer stable not the Taxotere alone.  Most patients with Her 2 neu positive tumors will receive some combination of drugs that includes Herceptin for the rest of their lives. She also gave me some interesting information about Herceptin.  This drug can stop working and for some reason when a patient is taken off Herceptin and then re-introduced to it sometime later, Herceptin begins to work again. 

Dr. R. was very thorough today in answering my questions and gave me much hope for the future.  She mentioned that my cancer tumors are so small that if we didn’t know for sure that one of the lymph nodes contained cancer cells, someone might look at my scan and suggest that I am NED (no evidence of disease) or at least really close to it.  She said that there is still a possibility that my tumors may shrink or disappear from a scan because of their size.  If I was a patient with widespread tumors that possibility would be highly unlikely.  Since my tumors have responded positively during this first line of treatment, it may be an indication of how my tumors will respond in the future. No guarantees, but for now all good news to me.  This appointment left me with some much needed hope.

Getting rid of the Taxotere chemotherapy drug decision will be made after my next scans in January and the recommendation of her team.  I hope it goes positively because I would like to have a full head of hair again.  Taxotere would no longer be present to kill those fast dividing cells.  My hair would grow normally again.  Plus food would taste better.   

Speaking of hair…my hair continues to grow on my head.  It is thin, but visible.  But, for some reason, where I need it most, on the top front of my head, it still is not filling in as nicely as the sides. Bummerrrrr.  My bodily hair is still barely noticeable.  Yes, no underarm shaving is necessary. 

That is all for now.  Thanks for reading.

Lisa