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.
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
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
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
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
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
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.
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
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.
*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.
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
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.