Why whining is necessary during Adriamycin Cytoxan A/C Chemo and goodbye to side effects+

Update: September, 2015  My sister has completed Adriamycin Cytoxan and has just moved to Taxol for Stage 3 Breast Cancer – here are some links I wrote about her experiences with A/C Chemo.  My own experience is below:

https://denise4health.wordpress.com/2015/07/22/lifetime-dosage-adriamycin-cytoxan-ac-chemo/

https://denise4health.wordpress.com/2015/06/09/adriamycin-cytoxan-ac-chemo-understood-less-than-five-percent/

A friend sent me a Facebook message that she had not heard me whining about chemo in awhile and hoped that meant I was doing better.  Well, at first I found it difficult to believe she had said that, then, in her defense, I realized it does sound like whining to those who have never been through Chemotherapy. But I am utterly and totally convinced that it is not possible to complete Chemotherapy without complaint.   But first I had to look up the definition of “whining” which is “to complain or protest in a childish fashion.” I think we need a different word besides whining.  If torture is being inflicted on a POW, if they cry out in pain, do you call it whining?   If a hostage is injected with  poisons and they complain as they don’t know if they will live or die, do you call it whining.   I think not.   The pink ribbons have really lessened the battle that goes on by Breast Cancer patients.   Pink denotes a comfortable warm and fuzzy feeling, and a ribbon is such a nice thing that you wrap on presents.  How can there possibly be a battle to fight with all that pink? The funny thing is, Adriamycin Cytoxan is a pinkish red.  Maybe that is how they came up with the pink campaign.   This drug is extremely toxic.

My Chemo Nurse told me they do not call it “red death” and “red devil” for nothing.  It can only be administered by hand into a vein, most often through a port, not an artery.  It can cause permanent heart damage, not to mention many serious side effects.   It is used to treat many forms of cancer, but can only be administered by a specially trained Chemotherapy Nurse in cap, gown and gloves by injection.  My dosage was four HUGE tubes each time.   It is so toxic you can only have it for so many rounds once in a lifetime.     And they warn you to flush your toilet not once, but twice or three times with the lid down and to wash your hands for 45 seconds during and after infusion.

But right now, it is the best weapon against Breast Cancer, it so often does its job, and we have to tolerate it until something better comes along!    For that I am grateful. ____________________________________________________ …. please check out my cute chemo caps at www.hellocourage.com my online store I started to help pay my medical bills and help other cancer patients find unique items to help them feel better.  All extremely high quality at affordable prices… I’ve searched high and low to do the work for you, so you do not have to do so!  Click on hats!

CollageSpring2015

We all know a few over-achiever chemotherapy patients who continued to work full time, go to school for their PhD, travel to Europe, run 5Ks, take care of 8 kids, and write a novel while undergoing chemotherapy.  They ruin it for the rest of us who are trying to just make it day to day. But in my case, I am through with Adriamycin Cytoxan which was administered “dose dense” which means every 2 weeks.  I am grateful that I was able to receive the drug and thankful for all the cancer cells it killed in my body.  I have Taxol to contend with for 12 weeks, but for now I am saying goodbye to the following side effects from Adriamycin Cytoxan.

These are MY experiences.  Some people breeze through AC with little or no side effects, and some people have more!  Often the younger you are, the better you make it through.  Certainly, there are exceptions to this. My experience:  Losing my hair strand by strand, losing my feminity and the ability to feel pretty, dark circles and thinning skin under my eyes, skin that has aged, not sleeping, debilitating mouth sores, horrific and constant nausea, inability to think of any food or watch food commercials on television, inability to move off the couch for a week at a time or more, neuropathy in hands and feet, bleeding hemorrhoids, metal taste in my mouth, extreme  and debilitating fatigue,  Chemo brain and mental confusion,  severe bone and muscle pain, weakness in knees, low blood counts which necessitate having to be a prisoner in  your own home, necessity to take steroids and not lose any weight even though you can’t eat, bloody noses, helplessness, loss of independence, severe heart palpitations, frequent urination 5 or 6 times during the night, severe hot flashes every 15 minutes, increased menopausal or chemopausal symptoms,  being severely out of breath because of low red blood cells, inability to even walk to the mail box, depression, chronic cough and mucusitis, horrific heartburn, blurry vision, twitching eyes, inability to wear contact lenses, inability to do simple tasks, inability to work and loss of income, loss of identity, inability to care for others, and the list goes on.  (Update:  6 months later I learned I had a heart attack during Adriamycin…I remember the night well, but thought it was side effects.  If you have ANYTHING that mimics heart symptoms, get to the hospital NOW!)

The effects of chemotherapy last over 2 years in your body once you are through it. So think before you ever accuse a Cancer Patient of whining.   Please do not say that word to them. If you are awaiting Adriamycin Cytoxan, you will get through it.  There is light at the end of the tunnel.  It will get better.  Live one day at a time or one hour at a time is even better.   And don’t listen to those who tell you to “stay positive” in the midst of it.  Some days you just cannot “feel” positive.   Put yourself first.  You will be a heroine when you are done.  You do not have to be heroic now.

And if you have been through Adriamycin Cytoxan, you know exactly what I mean.  No other words need to be spoken.  It is in the past, but it will never be forgotten. Here are a couple of posts with more A/C Chemo information: http/denise4health.wordpress.com/2012/08/20/fears-about-adriamycin-cytoxan-ac-chemo/   and   https://denise4health.wordpress.com/2012/12/19/do-not-quit-chemotherapy-even-if-you-want-to-and-other-chemo-info/

Update:  My only sibling, my sister, is going through AC Chemo for Stage 3 Breast Cancer in June, 2015.  It is so hard to watch her go through this.  I am now 3 years out, but the memories are still there watching her.  Time helps fade the memories, but I have them so I can help her now.

 

Nurturing Yourself during Chemo and Healing, What Causes Breast Cancer and Other Thoughts

Recently, I’ve spent alot of time reading about the mind/body connection about Breast Cancer.  Every author I’ve read agrees that Breast Cancer patients have one thing in common.   They know how to nurture everyone else but themselves and put everyone else’s needs in front of their own.  Also,  most cancer patients repress their emotions, especially anger, and need to learn how to release and rechannel emotions.

I’ve got a lot of work cut out for me.     So I have a plan.  I do not want a recurrence of cancer, so I am the one who has to change.  No one else can do it for me.  So I have to learn to nurture myself.   I pondered that all last night and couldn’t come up with one thing that felt nurturing to me.   Finally, this morning I knew it would nurture me to get the “sick energy” out of my house.    I didn’t need a cleaning woman, I needed someone to help me get rid of sick energy items and sick clutter in my home.

You can’t just ask anyone to do this.  But my sister stopped for coffee this morning and didn’t have anything on her schedule!  Bingo!   I am trying to learn to ask, she was present, so I asked.  Of course, I cried when I had to ask for her help.  Not as a manipulative ploy, just that it hurts me to have to ask for help!

So she took charge and told me we were getting rid of anything and everything that felt negative to me and connected to Breast Cancer.   We started in the kitchen and got rid of any and all paperwork that was from the hospital from things past.   That’s because I have a desk in my kitchen which is really just a junk collector and all these random papers ended up there.  I didn’t need it, I didn’t want it.  I threw them away.  And anything I needed to keep, was placed in a tote out of my sight.   Then we sorted food items.    Diann redid my pantry and put items that made me nauseated in the back so I didn’t have to look at them everytime I opened the cabinet door.   Medicines were next.  We made sure they were off the cupboard and put away.   What a difference.   Immediately my mood improved, my kitchen became nurturing once again, and a place to cook not collect Breast Cancer memorabilia and pink ribbons.

Then we moved to the bedroom.  She asked me what made me feel sick in there.  I said walking into a room full of wigs, hats and turbans.  Everytime I walked into the room it was a reminder that I am bald and enduring Chemotherapy.  I hate it.  So we rearranged my room and placed the wigs, hats and turbans out of sight.  Next, Diann suggested I get rid of my bed spread because I told her everytime I look at it, I remember lying on the bed and crying for days on end.    That girl is quick.  In an instant, she had it off my bed and into the Goodwill pile.  Next she found a gorgeous quilt I own that was cheerful and uplifting that was a favorite of mine and not being used.  We put it on the bed and immediately, the stagnet energy had changed in the room!

At this point, she was getting inspired, and wasn’t going to let me rest!   The closet was next.   “What makes you depressed in your closet,”  she asked.    Well, immediately I knew it was the blouse I had worn on the day of my diagnosis.  Everytime I walked into my closet, my eyes just focused on the despised blouse and could remember the horror of diagnosis day.   I wanted it out of my house and out of my life.  Bam, into the Goodwill pile.  That was so freeing!

Next,  Diann called a friend to help us move my furniture after I told her when this chemo crap is all over with, I am throwing away my couch.    So before I knew what  had happened, my living room and dining room were changed around.    All these months I had spent lying on the couch in one direction, was changed!   My living room felt less toxic and I felt more movement toward healing.   We also placed the couch where it isn’t the focal point of the room, so this feels alot more encouraging to me.

So I now knew how to ask for help and accomplish something that nurtured me all in one day.   “Maybe this won’t be as difficult as I thought,”  I pondered.

Choosing the right Oncologist for you, trusting your Oncologist, and other Oncologist observations

The most important thing I’ve learned thus far in Breast Cancer treatment is you must have the right Oncologist for you.  Sometimes the choice is made for you, and other times you do the choosing.  But whatever way you and your Oncologist end up being a cancer-curing team, make sure it is a good match for you.

How do you find the right Oncologist when you are so overwhelmed with all of the intricacies of a cancer diagnosis?

1)    Start asking other people especially any nurse or doctor friends you may have.   If this isn’t possible, assign someone you know who may be connected in this area to get information on area Oncologists.

2)   When you have your list narrowed down, research the Oncologist.  See where they went to undergraduate school, medical school, where they did their residency, and fellowship.   This is extremely important.

3)  If you live in a small town and your medical resources are limited, consider making an hour or more drive to find someone better qualified.  Even though this is very inconvenient, in the long run, it will definitely have its payoffs.

4)  On your first meeting with your Oncologist, have a list of questions ready for him/her.   If you are not comfortable with him/her for any reason, seek out the advice of another Oncologist.

5)  Make sure they have a positive attitude about the treatment of your cancer.  I have an acquaintance who was diagnosed with Stage IV Breast Cancer.  Oncologist #1 told her “Go home, get your things and children in order, and be prepared to go to Hospice”.  She and her mom weren’t buying that answer.  Oncologist #2 said, “Don’t worry, we will aggressively treat your Breast Cancer”.   She began dense dose chemo and within 2 months the metastases in her lung and liver were gone!  She is now 3 years No Evidence of Disease (NED).   What a difference an Oncologist makes!

6)  Along those same lines, if you have a Stage III or Stage IV diagnosis, you visit an Oncologist and are given a bleak outlook for your future, consider making a trip by plane or automobile to a major cancer center like MD Anderson in Houston which is the #1 Cancer Center in the USA.  Here is a list of the top cancer hospitals in the United States by US News & World Report:   http://health.usnews.com/best-hospitals/rankings/cancer          If you cannot continue treatment there, at least you will have a valued second opinion.   These centers will also recommend places for treatment closer to your home.  This visit can mean your life.   Personally, I know numerous people who are alive today because they made the trip to a major cancer center.

7)   To me, the staff at my Oncologist’s office is extremely important.  The Nurse Practitioners, the nurses, and office staff are also keys to your healing.  A well-trained office staff speaks highly about the care you will receive from your Oncologist.

8)  If you start with your Oncologist, don’t trust him/her, have bad feelings about them, look for another Oncologist.  THIS IS YOUR LIFE!  If your intuition is speaking to you that this Oncologist is not a good match for you, keep looking!

I am extremely fortunate to be treated by Dr. Daniel F. Hayes, Director of the Breast Oncology Program at University of Michigan Breast Cancer Care Center one of the top breast cancer centers in the country.  My confidence in him is 100%.  It makes a huge difference in how I feel about my cure rate.  He is  extremely credentialed.  Plus, an expert in the field of Her2Neu which is a marker in my breast cancer.  He has written countless published research about it.  What pride I have to call him my Oncologist.

Not only do I trust him, but he knows how to handle me emotionally.  When I told him I felt like giving up he said:  “Oh no you’re not.  I will not let you.”

When I told him I have no control over my life, he said with a laugh:  “That’s because I am controlling your life now.”

And when I asked him for an extra week off between chemo drugs he said:  “No negotiations.  But I can’t fault you for trying.”

Then he sat down, held my hand in a doctorly fashion, and told me I was doing far better than I realized, my blood counts were up, I have been strong and courageous, and that he was proud of me and my progress.  Then he made me laugh with a joke!   Here is an Oncologist who knew the right things to say, who cares about my whole person, and not just the cancer.

His responses were right for me.  They gave me more strength and courage to continue on this rugged road.   He instills confidence in my ability to heal and not have a recurrence.  That is priceless.  I want you to have that relationship and feeling of confidence in your Oncologist.  It is imperative!

Breast Cancer Survivor

Suddenly a tiny ray of light appears on the horizon.  I don’t know why.  I didn’t do anything to cause it. It’s been so long since there has been any, I am not quite sure that is what it really is.  But this is a new sense, a new feeling.  It is a glimpse, just a flash that there could be a new life at the end of this journey.  Instinctively I know it isn’t the same life I had.  But it is a future life that I believe is there.  I cling to that sliver of hope. 

Breast Cancer Survivor.  I never related to that labeling, but I think this is what might be happening to me.  Survivor.     That word is bantered around alot in a much too casual way.   I just looked up the definition of “survivor”:  “A person who manages to live through a situation that often causes death.”   Hmmm, I qualify and that makes particular sense to me since this was the week that I felt like I was dying, wanted to die, prayed to die but didn’t.   I lived.

Oh, we’ve all watched those Breast Cancer commercials, where they show all those women, wearing their pink t shirts, some bald, some not, some young, some old, some walking, some riding bicycles, they are all smiling, and there is some announcer saying that these are the faces of Breast Cancer Survivors.   That is so deceptive.   

I want a commercial that shows the woman crying at the hospital contemplating the removal of her breasts, facing the reality of her death as she looks at her young children and tries to explain, looking down at her scars where her breasts used to be, getting the dreaded toxic chemotherapy, and at home puking her guts out and looking like she will die at any moment.   That’s the reality.  You earn more than a pink t-shirt after all of this and a walk around a stadium with balloons and a marching band.  You have been through combat, and they give you a pink ribbon. 

I think an authentic Survivor has started to be born within me.  I feel a mission coming on. 

Discouragement during Chemo, wanting to die during Chemo, wanting to give up during Chemo

So I finally reached my breaking point this week.  It all came crashing down on me, the heaviness of this cross I am bearing.  I didn’t want to do it anymore.  I was frustrated, sick, felt like I was dying, and just wanted to die.  The feelings were overwhelming.  

Rather than fight the feelings, I just let myself feel the feelings.  Okay, no wonder you want to die and don’t care if you are cured, live 5 years, 5 months or 5 days.  It’s okay.  I felt angry, misunderstood and abandoned by God.   Finally, I gave myself permission to quit fighting, quit listening to all the “stay positive” crap, and let myself crumple under the weight of the Chemotherapy hell.   It was freeing to think that I could quit this if I wanted to do so.  I really didn’t have to listen to my Oncologist or anyone else.  I could quit and it would be up to me.   It gave me control.  I can quit this if I want to.  It’s my body and my life.

I try to be careful who I reveal these kind of feelings to as many people can’t deal with them.  Your loved ones don’t want you to feel that way as they so want you to get better.   Finally, I told my 28 year old niece how I was feeling.    Immediately she didn’t put any guilt on me.  She just said, “Of course you feel that way, it’s okay.   It’s a lie to think you can always be positive and encouraged.   That’s crazy.  It’s okay to feel the way you do.”   

Ahhhh, now that brought life to me.    Someone who loved me just validating my feelings.   It was tremendously liberating.   Where did she get all that wisdom when most other people want to try and talk me out of my feelings?  Immediately, I started to feel better and the old fight started to return.

So if you are going through Chemo or if a loved one is going through Chemo, let them have their feelings.  Don’t try to make them feel anything they aren’t feeling.   Feelings change day to day.  Today I don’t want to give up.  It’s a new day.  But yesterday I did.  And that’s okay.

Learning to Receive during Breast Cancer and Chemotherapy

This is my hardest lesson through all this drama of Breast Cancer, Mastectomy and Chemotherapy:  learning to receive.    How hard that is for me.  I’ve always been a giver.  Some of it is just my nature being a First Born and alot of it is learned behavior from my religious upbringing.   It is better to give than receive.

I enjoy giving.  It makes people happy when you give, it makes you happy when you give, and it stretches your ability to love when you give.  And through the years, some people have really taken advantage of my willingness to give.  I know that, and it is no surprise.  But I’ve always wanted to error on the side of giving too much instead of giving too little.  I think God wants it that way.   So here I am in a position that I am not able to give very much right now.    Last week I didn’t have the energy to tell a friend Happy Birthday – couldn’t make the telephone call, let alone send a card.   That is painful to me not to be able to do so, an actual physical pain.   It truly hurts me not to be able to give.

Even worse than not being able to give is needing to ask for help.  That “help” word hasn’t even been in my vocabulary through my life.   Always being a take charge woman with a grandmother and a mom who were take charge women, “I need help” doesn’t come out of my mouth very readily.   Even saying those words makes me cry.

So, guess what?  I’ve had to learn to ask for help.   I have had to accept offers to take me to the grocery store or pick something up for me.   I have had to accept offers to drive me to medical appointments an hour away, all the while fighting the voice in my head that says, “Denise, get in the damn car and drive.”   I have had to learn to graciously accept friends’ gifts of food because I just can’t do it.   I have had to learn to ask my almost 80 yr old mom to do things for me that I would rather do for myself.  

I hate it. 

Asking for help is the hardest part for me I finally understood today.  I can take the nausea, fatigue and the fact that you feel like you are dying.  I can take the loneliness of staying in the house because it is cold and flu season.  I can even take my bald head, my wigs and turbans.

But having to say those words, “I need help”,   I will never get used to it, and I don’t want to get used to it!  And that’s the way it is going to be.  I do not have to like it!   Isn’t this the part you say, “SO THERE” and stick out your tongue?

Dreams during Chemotherapy

I have had some very vivid dreams during Chemotherapy which have been very positive.  Always, I have felt God speaks to me through my dreams.  In the Bible, many people are spoken to in dreams.  My favorite Bible dream stories involve Joseph, husband of Mary, and Jesus’ earthly father.

The three specific episodes in the New Testament are as follows:

First dream: In Matthew 1:20-21 Joseph is told not be afraid to take Mary as his wife, because she was conceived by the Holy Spirit.

Second dream: In Matthew 2:13 Joseph is warned to leave Bethlehem and flee to Egypt.

Third dream: In Matthew 2:19-20, while in Egypt, Joseph is told that it is safe to go back to Nazareth.

If God speaks to Joseph in dreams, I know He speaks to me in dreams.

After all 3 weeks of chemo, I’ve dreamed I was in a basement.  Basements indicate the unconscious.  In all of the dreams, everything was in order and amazingly clean!!   Everything in the basement had been sanitized and was sparkling clean all 3 dreams!

This brings me hope, especially this morning’s dream.

There was a very safe-feeling, attractive man who escorted me down to a basement under my house.  I didn’t know I had a basement, and in real life, I don’t!  The first thing I saw when I entered the basement were these enourmous blocks of ice, piled in a very neat fashion, from floor to ceiling, all covered in white see-through translucent cloth, all connected to very detailed machinery.  It looked like something out of a science fiction movie.   I asked the man what that was.  He told me it was a very advanced water purifying process.  It was far more advanced than I could imagine.  I told him I had seen these purification processes with coolant.  He said this was far more efficient and futuristic and not to worry.

After we got passed this area, there were at least 300 bicycles lining the outside walls of the basement.  All were shiny, gorgeous, bicycles, in various colors but the same size.  There were several workers working on these bicycles.  They were in perfect order, all had their chains on, and tires pumped up.  I was shocked by the intricacies of this bicycle shop that I had no idea existed!

Then I woke up.   Immediately, I knew the dream was very important.  I am undergoing a purification process, my unconscious is speaking to me.  In dreams, you have to ask yourself what the thing or event means to you.   For me, bicycles represents a means of transportation much slower than what I would like to be driving.  I like to drive cars and go fast.  Bicycles always seem to slow to me.  When I was a kid, I liked my bike.  It was a bright blue Western Flyer bike.  But I got a little bored driving it, so I learned to ride it no handed to spice it up a bit.  I remember driving my bike no handed all the time.  I could even turn corners without my hands on the handlebars!!   And once in awhile that darn chain would come off.  That was so annoying!

So in my dream, the bicycles to me represent this slower means of transportation, kind of boring, but reliable.  And the chains were all on, brakes were all fixed, and every one of those 300 bicycles in the dream, were sparkling!  And they were being worked on by neatly dressed, mechanics who knew exactly what they were doing!

So what do I take from this dream?  I am being healed of any cancer cells as I undergo this advanced purification process.   There are many intricacies going on that I have no control and no ideas about, but the work is being done.  And although it is far slower than I would like, it is being done in perfect order.

And that brings me peace….