Monday, December 30, 2013

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

Saturday, December 28, 2013

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.

Tuesday, December 24, 2013

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.

Tuesday, December 3, 2013

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.


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.

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.

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.


Tuesday, November 19, 2013

Cancer Takes Slowly

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, just resting.
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?    

This will only get worse.

Self-pity consumes me.


Move forward two days…

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 have lived.

Tuesday, November 12, 2013

Cancer Stable, Same Treatment Continues

The 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 cancer cells.)  

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.
“Subcentimeter  hypodensities 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.

“A 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. 

“There 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 ever since.

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.     

Monday, October 28, 2013

A Child's Pain

Oct 26, 2013

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 faces. 

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 possibility.    

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 with later.

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 now.

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.



Tuesday, October 22, 2013

Chemo #9/next CAT scan, chest pain

Chemo #9 

I made it through Chemo #9!  And, I am feeling pretty good this morning.  Now if I could only stay this way…

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 said.

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 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.

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 more cancer!