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.
My lack of energy has brought me to a
lonely place. It prevents me from
actively participating in my life. I
float instead, still breathing, but barely.
And, the floating is occurring too far away. Yes, I am present, but I am not. I want to participate, but I am too tired.
My vim, my vigor is gone.
My eyes are open then they are closed,
I am so sad. My once active life is so different now. I will never be healthy me again and enjoy the
days where I had so much to do I felt I could not get it all done. And, then
would find such satisfaction when somehow I “did” get it all done.
Now, I sit home on my couch. Sometimes dizzy when I stand.
Do I cut-back my treatment, allowing
the cancer to grow, all for a little short-term invigoration?
Forty-nine…I am 49 years old! I am so thankful to be able to celebrate my
49th birthday today.
Self-pity does not consume me as it
did when my body was lost to fatigue. I
feel content again. My energy level is better
today allowing me to mop the floors of my home.
Wow, amazing how two days can make such a difference in the way I feel. I know those dark, lonely, exhausted days
will come again, but today, I am happy.
I am happy I will leave this world four wonderful people, my children.
They are the most important product of my life. No other aspect of my life has brought as
much joy to me.
A wonderful friend, Sandie, made
potato soup and brought it to me for my birthday. I wish my stomach could hold more. The words she wrote on my card made me feel
special bringing forth tears that I didn’t expect. Her thoughtfulness is appreciated more than
she will ever know.
Cancer will continue to take from me
all the things I love. Today, though, I
still have them. Today, I am grateful to
CAT Scan (computerized axial tomography- a
type of x-ray scan) results showed the cancer is stable! The treatment is keeping the cancer from
growing.My chemotherapy treatment with
the drug Taxotere, and my targeted therapies of Herceptin and Perjeta will
continue to occur every three weeks. (Taxotere
attacks all fast-dividing cells including cancer cells and normal cells.The Herceptin and Perjeta attack just the
With that BIG question answered and
out of the way, Doctor R. and I were able to discuss the little issues of how Taxotere
is making my life a bit unpleasant.
Usually by the third week after
treatment, I am able to regain my energy level to a point where I feel close to
normal.But, over the past three
treatments I have seen a decline.I
just don’t have the desire to get up and do a lot of the physical aspects of
taking care of a home.Sure, I still
throw in a load of laundry, vacuum the floors, and wash the dishes when I
absolutely must, but much of the other items I have been leaving until the day
I am motivated.That has happened with
the help of the steroids that I start taking the day before chemo.Those steroids give me back much of the lost
energy.Dr. R. said unfortunately the
reduced energy is the result of chemotherapy and most likely will be the trend
as chemotherapy continues.When my
energy level worsens to a point that my daily have-to-be-done responsibilities are
compromised, then she would cut-back on the Taxotere or cut it out altogether.The daily must-do-activities for me would be
the taking care of my last remaining child at home.If I can’t take her to her extra-curricular
activities or her schooling at home is jeopardized, then something will have to
change.If that is done though, I would not get to
return to that drug as a treatment.That
scares me because once a drug can no longer be utilized for treatment the list
of drugs to use will be shorter.Once
the last one is used, there is nowhere to go. The list of drugs for Her2 neu breast cancer
is longer than once was the case, but it isn’t that long.
Next, we talked about my lovely
fingernails.Taxotere again is the
problem.With this drug, it attacks not
just the fast dividing cancer cells, but also the fast dividing normal cells.Those include your hair (this is why patients
lose their hair), your digestive tract cells (diarrhea, stomach issues, mouth
sores), and your fingernails (which get such attractive horizontal ridges plus can
turn black from the blood resulting from the nail separating from the nail bed).
I have four nails, two on each hand that
have separated partially from the nail bed.Two have minor nail-bed infections.I soaked them yesterday in soapy water and then pressed the fingernail
to push-out some of the clear-yellowish fluid trapped underneath. Dr. R. didn’t like my approach of pressing on
the nail bed because this can cause more inflammation, but it did made my
fingernails hurt less.She decided to
give me an antibiotic to help my body combat this nuisance.
I have also noticed I am having
difficulty finding foods that I want to eat.Not a whole lot seems appetizing.I feel hunger, sit down to eat, and within a few bites I no longer want to
eat.Or I will look in the refrigerator,
the cabinets, the pantry, and nothing in any of those places seems appealing. I am also feeling more nausea symptoms then have
been noticed by me in the past.This is just
another aspect of the drug Taxotere adding yet another obstacle to my
life.The cancer is a much greater
obstacle and Taxotere is helping me keep this beast under control.So for that, I want to keep it.And, if the only thing I want to eat is split-pea
soup every day with some fruits in between then that is what I shall eat.
Dr. R. then listened to my heart and
lungs.All sounded normal.
Now, on to the discussion of my scan
results…As I said, all tumors appear
stable.To add some interest to those
who enjoy reading such reports I will include pieces of that report here:“Infiltrative
soft tissue in a 2R station measures 1.8 cm.” This is the mediastinal tumor
in my chest between the lungs.The “R”
means right-side.It was 2.8 cm in July,
1.9 cm in April and 1.6 cm in March.
“Subcentimeterhypodensities are again noted in the thyroid
gland, stable.” These are not supposed
to be cancerous, but a being watched.
The right lung has several nodules. Since they have not been biopsied they will
not be confirmed cancerous until growth is noted.I know one is not cancerous because it had
been followed for several years with no change.Because it is calcified it “most
likely represents sequalae of prior granulomatous disease”. Sequalae is caused
by a previous disease or injury. Granulomatous Disease could have resulted from
an infection such as tuberculosis or from a bacteria or fungi.“A
peripheral 0.9 cm nodule is stable since 3/29/13. Several other scattered
subcentimerter nodules are also unchanged.” Nothing in the report noted anything seen in
the left lung.
tiny hyodense lesion in segment VII of the liver is too small to characterize
but is unchanged since 3/29/13.”Not confirmed as cancer at this time.
is a nonenlarged para-aortic lymph node in the upper retroperitoneum,
previously described as a paravertebral lymph node.”The retroperitoneum
is the area between the two kidneys.Located
between the two kidneys is a vein (blood to heart). There is also an artery (blood away from
heart).Along the vein and the artery
are lymph nodes.There is something suspicious
about this lymph node, but I am not clear as to the why since it is indicated
as non-enlarged, but for now it remains stable.
Nothing was found in the scanned
part of the neck.
So, there is my report.Nice 49th birthday present for
me!Yes, I will be 49 on the 19th
of this month.
Today was a fun chemo day.Not usually how I would describe infusion
days, but today was different. A good
friend from high school came to visit me.We talked the entire time.I must
have over-done it because this morning I am more than hoarse. I have totally lost my voice.My one working vocal cord will need to rest today.But, my voicelessness is a testament to the
good time that I had spent with an old friend.She was the very first person who introduced herself to me at my new
school when my family moved back to North Carolina in 1976 after living in Louisiana,
Kentucky and Indiana.We have been friends
My next scan will be in February.Like all cancer patients, I keep hoping for
some reduction in the tumors, but I will take stability over growth any
day.So, it was a great day for me, and
a very happy day for my family.
In the dark, silence of the night, my 10-year old daughter came to
me.I felt her presence before she
spoke. Through the darkness, she quietly asked, “Mom, are you awake?”
I said, “Yes, what is it hun?”
Her voice was breaking and she said, “I was thinking of something I
shouldn’t have been.”
The dim light in the room allowed me to see the emotions of her
face.She was clearly shaken and
scared.As I looked at her, the emotions
she was feeling peaked.The moment her
face let go of those emotions, I grabbed her, and she fell into my arms.She needed me to stop her pain.We held each other tightly.Quietly, our emotions fell down our
As we held each other, I tried to figure out the best way to ask what
was upsetting her.But, I knew.She had done this once before.It happened in the same way.I had had a conversation on the telephone
with my sister about my condition.The
same type of conversation had occurred that night.She obviously had paid attention.
I know I didn’t say anything she was not aware of concerning the nature
of my cancer.She knows that once the
drugs no longer work, I won’t get better although she holds onto the
She has heard me talk with others about my situation before, but
tonight she couldn’t part from it.It
was hard for her to put it away in its little box to be left alone, to be dealt
I asked her if she wanted to talk about it.She said, “No, I don’t want to talk about it.
I just needed a hug.”
After a few minutes, she said she was better, and she lay back down to
sleep. As I tucked her covers in around her, I let her know that no matter what
she is feeling or thinking she can talk to me about it.
“If you are having bad thoughts, it doesn’t make you a bad person.Everyone has bad thoughts,” I told her. “If I
am ever talking to someone and you are hearing something you don’t want to
hear, you can ask me to stop.Don’t be
afraid to ask, I will stop.”
I did not ask that she reveal her private thoughts to me.She was not ready.They were better left under the covers for
I, too, lay back down to sleep.But, sleep I could not.My mind
was filled with questions.How could I
stop her pain? What will happen when I am gone?Will she get the same emotional support that I have always provided for
her?She is being impacted by my illness
and eventually will be impacted by my death.What can I do?
The reality is I can’t stop her pain.I can’t be around to make sure her father does what I have asked him to
do.I can’t be here to make sure all her
needs are met.There are no guarantees
that her father, sisters, brother, and grandmother will listen to her as she
weeps.I can only hope that everyone
around her will do what I need them to do.To make her feel safe, secure and make sure she knows that someone will
be there to care for her.And, to make
sure she knows that if I could have stayed, I would have.
She probably feels helpless in the same way I do.She can’t fix it.She can’t make me feel better.
Hugging her in an effort to put pain and fear in a different place than
at the forefront of her thoughts and telling her how much I love her is the
only thing I can do.I will do that
until my last breath.
I made it through Chemo #9!And, I am feeling pretty good this
morning.Now if I could only stay this
Yesterday, I had expected to have an
appointment with my doctor, but instead I saw a Physician’s Assistant, Ms. P.My doctor was in with another patient and
then needed to eat lunch, so I suppose they felt like I had been waiting long
enough to see someone, which I had, so Ms. P. jumped in to help.At the end of the appointment Doctor R. came
in to see me, so I was able to ask her one question that I have asked before
but can’t seem to let go.
After the introduction, Ms. P. looked
over the sheet that I am asked to fill out at every appointment.It is yellow and has questions about my
health.The instructions ask that I rate
each question from 0 (none) to 4 (worst).The questions ask such things as, Do you have any pain?, If so, where?,
Do you have diarrhea or constipation?, Any vomiting?, Chills?, Fever?, Hair
loss?, Difficulty breathing?, Numbness/Tingling?, Urinary Pain?, etc.Sometimes the person seeing me looks at it,
and sometimes they don’t.Today, Ms. P
reviewed each question.She stopped on
the one that caught her attention.
“Tell me about your chest pain,” she
Chest Pain On October 13th, I awoke with
soreness in my back on the right side along my back ribs.Every time I would breathe deeply, I would
have chest pain.Initially, I thought I
must have slept in such a way that caused my muscle to remain tense and
wouldn’t relax.The next day, the back
pain was gone, but I still had the pain when I breathed deeply.The pain would radiate out from the center of
my chest and I could not determine whether it was coming from my stomach or my
lungs.It did give me a bit of a scare
because my brain was giving me images of my chest tumor between my lungs
enlarging.I kept thinking please don’t
be that, it is way too soon for me to have to face what comes next with that
devil.I was pretty confident it was not
a heart issue.But, because it was
lasting for so many days, I was beginning to think I needed to have someone
listen to my lungs to make sure there wasn’t any fluid accumulating from
further lung metastasis.
I explained to Ms. R. that I called the Nurse Navigator on Thursday.She
felt like my chest pain was due to my stopping my inhaler.I hate using my inhaler because it causes me
to be so hoarse that it makes it difficult to read aloud to my 10 year
old.I have always loved to read to my
children.But a paralyzed vocal cord
from my cancer pressing on the vocal nerve, breathing issues and the
need for an inhaler and sinus drainage from the allergies makes my speaking
voice weak and makes reading and indeed talking difficult.The extreme hoarseness is not consistent, I
am so thankful, but lately it has been troublesome.So I stopped using the inhaler in hopes of
having a stronger voice.Well, because
of that, it seems I may have brought myself some unnecessary pain. As bad as I want to, I can't seem to do without the inhaler. Again, I started using it.
A few days later, and I had relief!
Ms. P, the physician’s assistant, and I
discussed the chest pain and she agreed that I need to have continued use of my inhaler. My allergies must be really bad right now because
when I talk it sounds as if I have to take a deep breath at the end of every
sentence. My sister noticed it when I spoke to her on the phone the other night as did Ms. P. noticed it on this day. This has happened before I
knew I had cancer.
Ms. P. also felt that my stomach could
have caused some of the pain since I have been complaining of that for the last
couple of visits.She suggested I take
some Pepcid or some other over-the-counter medicine. The steroids and the chemo
are hard on the stomach.
Before she listened to my lungs, we talk
about the rest of my list of questions.I am always prepared with a list of questions or plans to be made.During the weeks between appointments, items
pop into my head and I write them down.
Next CAT scan We needed to plan for my next CAT scan.This will look at my neck and chest to hopefully see reduction or stable
cancer which is good too.The abdomen
was looked at last time and was clear so this time it won’t be looked at. I will have the results at my next appointment
which is November 11.
Testing for Herceptin resistance My next question stemmed from the
research I have been doing on the internet.I have found information about a study that was looking at the affects
of curcumin which is found in the herb turmeric.The study broke down the different cancer
subtypes and noted the response of each to this treatment.(The initial results had some good responses
but more research is needed.) One line was an SK-BR-3-hr which was an ER- Her 2
neu + (My type is ER- Her2 neu+ but I have no idea if it is the same breast
cancer line. ).This type is Herceptin
resistant. I wanted to find out if my
cancer could be tested to see if it was Herceptin resistant since this targeted
therapy is part of my treatment.Ms. P
said that this testing was not available for commercial use.So I guess I won’t know about the resistance
unless it is seen on the CAT scan. It seems
like this would be very beneficial information to have, but only clinical
trials make that available for patients apparently.
Siemens Serum Blood Test Also, in my research I discovered the Siemens Serum
Blood test.Christine Druther, founder
of the Her2neu support group www.her2neusupport.com
website highly recommends this test to check her serum levels, of her now in
remission, HER 2 neu cancer.If the
serum levels are higher, it would appear her cancer was growing or had returned.
This is the second time I have asked
this question.The two medical
professionals I have asked did not know about this blood test or perhaps the
name is what they were unfamiliar with.As I was talking to Ms. P I realized that this could in fact be a tumor
marker test.She said it could be.This morning, I checked my thinking on the
internet, and I found out that is what it is.Question answered.I won’t be
getting this test because this group of doctors in Chapel Hill see flaws in
this testing and rely solely on imaging to see cancer treatment responses.
MUGA Heart Test The MUGA scan that I was given at my
last appointment to see if Herceptin is damaging my heart was at 61%.This is an acceptable range but is down from
the 66% heart function of three months ago.This troubles me because it is down, but it may go up a little at the
next MUGA scan in 3 months.As long as
it is between this 66 and 61%, things are good.
Grapefruit I have been thinking about eating
grapefruit lately, but I am aware of its negative interactions with many
drugs.So my next question dealt with
whether or not I could have some.I love
grapefruit. The answer to my question was just as I had expected.It figures that the Taxotere and some of the
other drugs I take on an as needed basis metabolize through the same pathway in
the liver as grapefruit.So it will be
best if I avoid it. Darn.
Next, Ms. P. listened to my lungs and
felt for enlarged lymph nodes.She heard
no unusual sounds in my lungs and said they sounded clear!The chest pain I have been experiencing is
not from fluid in my lungs.That is a
relief.And, she couldn’t feel any
enlarged lymph nodes in my clavicle area. That is another piece of good news.
My Esophagus As the appointment came to a close, Ms.
P. said she would go find Doctor R. and see if she could see me for a few
minutes.She left and returned with
Doctor R.Doctor R. sat down while Ms.
P. stood. I decided to ask her the question that has been simmering in my brain
especially when I have any kind of chest pain.The mass in my chest brings horrific visions of what could happen to me
if it enlarges.It could constrict my
esophagus, compress the vein farther that it is next to plus begin to compress
and the artery as well. Again, my
research on the internet may not always be the best thing for my mental health,
but it helps me prepare for what I could face in the future.
I asked if she knew of any cases where
the cancer was removed from this area. (Cut out like cancers are cut out of intestines
and then put back together.)I was
thinking that if it started to cause problems that removal seemed like it would
alleviate these problems more permanently than other treatments.Doctor R. said that my tumor’s position in
the mediastinal area butting up to my esophagus is not very common and she
cannot predict if it will stay the way it is or grow.Surgery is not an option as this has not been
shown to extend life.The esophagus is
not flexible like the intestines and it is secured to the structures that
surround that area making it extremely difficult to reattach.Patients, especially those with esophageal
cancers have to have all nutrients taken in through the stomach after such a
procedure is done. She did say that we may not have to deal with that issue for
two years. (What? She said 2 years, never has a number been given to me, so
seems I may live for 2 more years! ) But wait a minute, I thought no
predictions could be made.See, I know
she has in her mind what she expects to happen based on her experiences. Of
course she went over what things would be done if it ever did cause problems
such as swallowing difficulty.Radiation
would be done if no chemo was shrinking it rapidly enough or at all. And, stents can be placed to stop narrowing of
the esophagus, vein, or artery. Or the
esophagus could be stretched to allow for easier swallowing.(Probably not stretched too far since it
doesn’t stretch easily.) I read these procedures can have complications.Yikes.She told me to try not to worry about that area because the cancer may
not grow.It may metastasize to another
area that could be more life threatening. Oh, that was comforting although true.
Side notes:I have noticed that I have not recovered as
easily from the last two chemos as I did the previous seven treatments.By the third week, I was pretty close to
feeling like my old self, but these last two I am not quite there.Chemo, what fun.
My hair, interestingly, is thickening as
it grows. Now it is not the thick head of hair that I have always had, but hey,
if it keeps this up I may be able to walk around without my hat or
bandanna.The hair in the front top of
my head doesn’t look quite as nice as the sides and back.There is hair in that area but the color is
grayer than the rest of my head so it looks balder but really isn’t.
Bye Bye Chemo #9.I hope my scan looks good so Chemo #10 can KILL