Tuesday, September 10, 2013

A journey? Nah, A nightmare is more like it.

2nd Chemotherapy Treatment
May 29th 2013
Once again I am waiting in a small room overlooking the street below.  Soon my oncologist will let me know if I can have treatment based on my blood test results.  My white blood cell count has to be checked along with my liver function.  The liver is responsible for eliminating the drug Taxotere from my body, so if it is not functioning properly there would be no chemo for me today.  Before the oncologist arrives, a young man entered the room.  He wanted me to be part of a study concerning lifestyle and how it is related to breast cancer.  This study would not benefit me, but could possibly help those that come after me.  All that would be involved was a blood sample taken from me and my authorization for tests to be done on it.  The results would not be provided to me.  I actually would have liked to have seen those, but I can’t imagine the test would reveal anything I didn’t already know.  An interview of about 1 hour or more was required as well.  This could be done during my infusion time.  It seemed simple enough so I agreed.   The young man was able to use some of my blood that had been taken from me already.  That saved me from being pricked again.  He also had time to interview me today.  This was turning out to be really easy.  As soon as the bag of saline was dripping into my vein to ensure that I was hydrated before the treatment started, the interview began. 

The Lifestyle Study Interview
The questions focused on how healthily or unhealthily I live and have lived my life.  Several questions were quite hard to answer.  For example:  How many cigarettes would you say you have smoked per week in your life?  Well, since I smoked from age 21 to 28 and then would smoke only occasionally in my 30’s, I found this question difficult to answer.  During my 30’s I smoked maybe two evenings out of a whole year.  This would occur when a friend would come in from out of town who smoked, and I would socially smoke with them while we sat on my back porch talking.  I am 48 now, so I tried to figure the total number of cigarettes I had smoked at 1 pack (20 cigarettes) a day for 7 years.  (I didn’t always smoke a pack a day so this added to the difficulty in answering the question.)   Then take that number and divide it by the total number of days since I was 21 to the present. Estimated in this way, the number of cigarettes a day was about 5, but that does not account for the fact that my lungs had many years of being cigarette free which was certainly good for my health.  From what I understand about smoking, after a number of years, 7 I think, the lungs can look like that of a non-smoker.  So, as I said, that was a difficult question. 

The same was true for this question.  How many drinks containing alcohol a day would you say you have had during your lifetime?  Good grief, in my 20’s I drank considerably more than compared to my 40’s in which I hardly have any alcohol at all.  I could not estimate how many packs like I could with cigarettes.   I didn’t keep track of the days I drank wine, or mixed drinks, or beer.  It was very random.  So, how can I answer that question?  Definitely, this answer was a wild guess indeed. 

Another question involved how many hours a day do you sit?  Since each day for me has a different amount of sitting, I took a wild guess at that one too.  Throughout the questioning, there were several questions that were similar to these questions but were asked in a different way.  I tried to answer the questions as I had answered them before, but really I felt like my mind could not keep it all straight.  So, I am not sure if I helped provide good information for the study.  Even so, the interview made the time pass pleasantly. 

The 5th day after the Infusion
June 3rd.
My second chemo infusion occurred on a Wednesday instead of Monday because of the Memorial Day holiday.  The last treatment I had left me feeling as if I had lost four days of my life.  Lost due to how much sleeping I did over the first weekend after the infusion.  My body also couldn’t fight off a urinary tract infection and conjunctivitis.  And, I had a nasty fall that left me bruised along my right side.  How I felt over those few weeks made me worry about how my body was going to handle the treatments ahead.   The nurse navigator, Ms. B., told me before my first infusion that the side of effects of each treatment can be different.  Three years ago, my side effects didn’t seem to change with each of the 6 treatments I received.  I sure hope what Ms. B. said will prove to be true.  

Today is the 5th day since my cancer killing day.  This time I feel better.  Ms. B. was right!  Yes I am tired, but I am not sleeping entire days away.  I am so glad.  Now I think I can do this for a little while.  These drugs just have to be working!  It is so scary to think that on average, people like me with metastasis to the lungs only live 2 to 4 years.  I wish I could trade this body for new one.    

Side Effects
Diarrhea is one of the worst side effects.  It can make it hard to go out in public.  I know where all the good restrooms are in town, so that helps.  The magic of Imodium has made it possible for me to take my daughters to their college summer school classes without incidence.  I remember watching a morning show on television shortly after Al Roker from The Today Show told his story about losing control of his bowels when he was in the White House back in 2006.  One of the women on a show I had on for background noise was commenting on his story.  She could not understand how something like this could happen to someone as it had not happened to her.  Obviously, she has never had Irritable Bowel Syndrome, gastric bypass surgery, or chemo or any other condition that can cause events like this.  Surely there were other people like me, sitting on their couches, or cleaning their home like I was, who were thinking to themselves, how can this woman not be more sympathetic to the audience she is rambling to?  The morning talk shows seem to be full of nonsense anyway so why did I have the television on in the first place.  With no dish or cable for me, I am stuck with basic television watching and this makes for limited show options.

My muscles in my shoulders and my hip joints did hurt after the Neulasta shot.  That shot helps to increase my white blood cell count as chemo can reduce it.  If the immune system really plays a role in identifying cancer cells with the help of drugs like Perjeta then Neulasta is an essential addition to my treatment, but I think that is still up for debate.  The drug is supposed to help me fight off infections that I might encounter in daily living, although it must have been a bit slow to help after my first chemo.  I am still grateful for the shot.  Thankfully the side effects only last a few days.   I could really feel the soreness when I lay down at night, especially in my shoulder muscles.  The over-the-counter allergy drug, Claritin, is supposed to help with the pain, but I did not remember to buy any when I was in a store that sold it.  Last time my hips would feel like they would lock-up and then release.  That was pretty painful.  That actually is most likely a result of the chemo drugs and not the Neulasta.   So far that has not happened again. 

I have been rinsing my mouth with salt water at least twice daily in an effort to keep ulcers away.  The ulcer that appeared in the corner of my mouth during the last treatment is still causing me some pain.  I am hoping the salt water rinsing will keep it from getting as big and painful as it did before.  

June 4
Today is Tuesday June 4th.  My intestines are unhappy, but if that is the worst of the side effects then I suppose all is well.   Each morning it takes a while for my intestines to settle and then I might have little bouts of trouble during the day.  I ate popcorn just after the first treatment and boy did I pay.  Such a shame, I love popcorn.  This time, no popcorn and I have had a little diarrhea that has been perfectly manageable.   With Irritable Bowel Syndrome (which is what doctors say you have when they don’t know what else is wrong with you), I have had for years with on and off problems, so really today it is hard to tell if this is normal me or chemo me.

I want so badly to be the 1 to 3% that lives longer than 4 years.  I am so hopeful that the new drug I have been given, Perjeta, will keep the cancer from growing.  A grim reality hit me yesterday when I realized that my mother-in-law may be the person who takes care of me when I can no longer take care of myself.  I really don’t want her taking care of my personal needs.  I guess I can’t worry about that right now.   

If I can continue to have side-effects with each new treatment similar to the side-effects I have had with this treatment, then I know I can do this.  Yes, I am tired, but I am alive and can breathe.  I must say, not being able to breathe is my biggest fear.   Several months ago I was having asthma symptoms and could not breathe well when I went up the stairs in my home.  My youngest daughter and I had a stretching routine and every night to warm our muscles we would walk up and down the stairs. I would become quite breathless.  It was a horrible experience.  That is why I began seeing a pulmonologist.  I speculated that I was allergic to cats.  I was never tested, but my 14 year old cat had started living inside our house and that was the only change in my environment that I could think of.  Once I started on an inhaler, I could now handle the stairs with no closing of my airways.  Could have been another allergen, but I am going to blame the cat for now.  My oncologist said my lung tumors were too small for me to have any type of symptoms from those.  

Good Grief, Cancer Sucks!
My doctor in Chapel Hill, Doctor R. has said twice now, “This is incurable”.  Instead of thinking about what I might do next year, she told me I should only think of my life as what I will do next week.  That doesn’t seem like she thinks I will be around very long.  It doesn’t seem as if she even is excited about trying to keep me around for awhile.  My relationship with her is still quite new so I will give it more time and see what happens.  Even though my relationship with Dr. A. is no longer, he did bring the positive aspect of saying he believed I would be around for a long-time.  Even though there was no way he could prove that this was true, I as a patient needed that kind of positive attitude.  So, I really wish at times Dr. R. would throw a little positivity my way.  I am in such desperate need of some positive feedback about my cancer.  Maybe I could be the small percentage of people that sees an NED. (no evidence of disease) on my CAT scan.  That would just make me so incredibly happy.  Yes, I have read that even though some patients reach NED, the cancer will always come back.  I knew that stage IV breast cancer was bad, but I did not understand until now that there is absolutely no chance of a cure at least for everyone except for about 1%.  The medical community does not talk about a cure with this type of cancer.  Other types, yes, but not this one.     

I want to stay in this world, but the cost to keep me alive is so extreme.  I am not prepared to say I don’t want treatments cause I do want to live, but the financial aspect is daunting.  Greg told me this morning that so far each treatment in Chapel Hill is approximately $38,000.  Thankfully, we have good insurance where there is a cap of how much we will have to pay out of pocket.  I am tremendously grateful to all the people who buy insurance with this company because it is truly helping me.  We were already financially stressed from tying to recover from a failed business.  This just compounds the problem.  I worry that we will, or rather my husband when I am no longer living, will go bankrupt over this.   Why did this have to happen?  Three kids in college too.  I hate thinking about what my illness means to the family.  Yes, there is nothing I can do.  I must have the treatments so I can stay on this planet as long as I can.  

Having cancer really puts a new perspective on being financially strapped.  Before cancer I was suffering physically from our financial situation.  Sometimes I would have such anxiety about it that I felt I was having trouble breathing.  Now that I am facing this deadly disease, I really would rather be completely broke with no end in sight then to have this cancer in my body.  Cancer is worse than any failed business.  It is worse than worrying about how to pay for college.  It is a nightmare.  Whoever decided to call cancer a journey was really trying exceptionally hard to find the positive aspect of this disease?  “Journey” to me is a fun adventure.  This is not fun. 

June 7th
My youngest daughter’s last day of Gymnastics, at least for a little while, was on June 7th.  She looked so happy showing all of us what she can do.  And she made a friend during this time, so that made these classes even more special.  I have seen a vast improvement in what she can do.  Plus if she works at it, she will have her straddle completely flat on the ground.  I have enjoyed every moment I have watched my kids in their various activities.  I truly love being a mom.

The Brain MRI
June 8th
Friday, I had my MRI of the brain.  It scares me immensely to find out the results.  One of the worst aspects about Her2 neu breast cancer is that it likes to go to the brain.  I keep chanting in my head for the medicine to “kill the cancer”.  The drugs I am treated with do not cross the blood brain barrier because their molecules are so big.  That is a cause for worry, but if the medicine is able to do the job it is supposed to, it will stop those tiny cells from spreading to the brain by killing the cancer before it reaches that part of my body, at least that is the hope.  If it is in my brain or ever goes to my brain, I am pretty sure that means my time here is even shorter.  Ok, I know I need to stop harping on the bad things that can happen.  I do need to be aware of it though so I can somehow mentally prepare for it if it does.  At least that is my theory.  I like to be prepared.

The MRI machine was quite loud as it took the images of my brain.  I was given ear plugs to muffle the sound which it did although it was still very loud.  Many times the machine would make a knocking sound.  My daughter told me she read about how it works after she had a MRI of her ankle after she injured it while dancing.  She told her sister and me that the knocking that I heard was the magnets realigning to set-up for the next set of images.  I won’t find out the results for a few days.

June 10, 2013
The nurse navigator from Chapel Hill called today.  No cancer can be seen in my brain!  Yaaaay!!!

No comments:

Post a Comment