Lifetime Dosage – Adriamycin Cytoxan – AC Chemo

As the chemo nurse came in to administer #4 out of 4 Adriamycin Cytoxan Chemotheray to my sister, Diann, she said:  “Good news!  This is the last of your lifetime dosage of Adriamycin Cytoxan!”   Diann, who is going through treatment for Stage 3 breast cancer, was beyond relieved that she never has to get another dosage EVER of the Red Devil.  It is so strong that your lifetime dosage is measured!  What an accomplishment to finish that drug.  But the grueling side effects remain for quite some time before Diann begins Taxol, her next drug for 12 weeks. Any of you who have been through AC, know that you feel like dying through Adriamycin Cytoxan chemotherapy.  I certainly did.  When women write me for encouragement getting through AC, I tell them it is normal feelings to want to give up and die.  The drug does that to you!  It is torture, but it kills cancer cells – along with a lot of good cells.  You feel the death of all of them.  But once you are 3 years post-chemo like I am, you never take a day for granted that you did it, that you did not give up, and that you are still alive!  Diann and I did it and you can too!!

Here is some advice from Diann for those going through AC Chemo:

1)   Infusions –  #3 AC is the worst both emotionally and physically.  By the time you get to #4, you are so glad it is over, mentally you are better able to handle it.

2)   Mouth sores and metal taste – Biotene really helped me.  It can be purchased over the counter.  But make sure any nausea has subsided before you rinse your mouth with it or I would start gagging.

3)   Dry heaves and nausea –  be sure to take your anti-nausea meds ON TIME even though most Oncologists say “as needed.”  Don’t wait because you think you are okay.  The nausea will sneak up on you and then it takes much longer for the medicines to work.  If one medicine doesn’t seem to be working for you, call your Oncologist.  They can prescribe many other anti-nausea meds to help you.  Compazine worked for me better than Zofran.  But Zofran worked better for a friend than Compazine.  We are all different!

4)  Good Days – If you are having one of those rare good days, get out of the house and do something that you enjoy!  Even if it is just a change of scenery over to a family or friend’s house because of low energy and sit in their recliner rather than yours.  Anything helps to get off of the sick bed, couch or recliner!!

5)  Energy – Plan anything that needs more energy in the morning while you have it.  If it is necessary for you to go to the grocery store (try to get someone else to do it, though), do it in the morning.

6)  Work – If you are attempting to work through AC Chemo, try to make it part time.  Fortunately, my boss was very flexible.  I was able to work for 4 or 5 hours on the days I could.  During AC #3 and #4, those days became less.  But I did find it helpful to go to work as it made me feel more “normal” for a little while.  On my best days, I only lasted until 2:00 pm.

7) Naps – Take them as needed and take them as often as you can!  It really helped me both with nausea and energy.

7)  Children – As a single mom who raised 3 children on her own and now I am a grandma, I kept thinking of women going through AC Chemo who had small children and wondered how they do it.  If you have small children, you will need help and lots of it.  Say yes to the people who offer to help you.  Little kids give you energy as well, but you definitely will need help.

8)  Accepting Help – And speaking of accepting help, it will be most challenging, but learn to receive.  I needed help and absolutely hated to ask for it.  But I had no choice on some occasions.  This was one of my biggest lessons.

Diann gets tired of people telling her she looks great when she has her hats and headgear on from my online store http://www.hellocourage.com  because she feels so bad physically.  But we can all agree, she does look amazing even during Chemotherapy!!  Diann’s favorite headgear from my store is the Breezy Collection which she can wear over a wig like she has done in this picture!

Click on her pic to get to my store and in Diann’s honor, get an additional 10% off already discounted prices with Discount Code   DIANN

Diannbaldchemo2

Chemo, Steroids, Mood Swings and Bitchiness

My poor sister is in the worst of Adriamycin Cytoxan (AC) right now.  When the bottom falls out of her cell count, she feels like dying, she knows she is being poisoned, feels the death of her body, can’t get off the La-Z-Boy, and is so miserable there aren’t words to describe it.  If you have been there, you know.  It is so painful for me to watch.  I rarely cried during my own chemo nightmare because it made me feel worse.  Watching and empathizing with Diann, I cry.  I feel what she is feeling, and I’ve been there.  It is worse watching and listening to her than it was for me going through it.  But, on the other side, I laugh a lot too, at Diann’s expense.

Steroid Bitchiness – there really isn’t anything more pleasant you can call it. “Mood swings” may be a little more gentle, but the mood is always swinging in one direction.  And no medical person really tells you to expect a different person to emerge.   My mild-mannered, kind hearted, rather soft spoken sister has become a truck driver swearing, outspoken, raving maniac!!  The other night I took her for a drive so she could get out of her house.  As the drive began, I heard more swear words coming out of her mouth beginning with a “B” and an “F” than I had heard from her during her lifetime.   I can’t help but laugh at her because her personality is so opposite her usual pre-chemo self.  Yesterday I told her, “Diann, I’m not going to lie to you, I’m a little afraid of you!”   Then we both burst out into laughter!

bitchinesssmileyface

I did warn her this personality change would occur.  Now I was leaning toward the menopausal side of bitchy before chemo, but it still really reared its ugly head to the extreme.  Some examples stay with me and cause me to laugh even now!  My insurance agent dropped me and gave me to a new agent because during chemo when my insurance carrier wouldn’t cover severe storm damage and every other house in my neighborhood had coverage, words came out of my mouth I didn’t even think I knew!  I created a scene in Walmart when a woman ahead of me had about 84 items in a 20 item or less line. You understand the frustration of that one, but this time I could not hold it in.   It was such a scene that the entire line of people behind me and this filled-to-the-top cart person erupted into applause when I got done with my tirade!

My family members and a few understanding friends laughed at me as they thought I was funny.  Now I understand as I listen to Diann!  People who don’t know you that well or don’t understand about steroids, chemo and the impact they have on your mouth and moods really don’t know what to do with you!

If your loved one is going through chemo, they really cannot help or stop their behavior!  Chemo and drugs took the filters away.  The filters do come back, but it just takes awhile. And in the meantime, the anger helps them deal with the suffering they are experiencing.   Laugh with them, cry with them, and understand their moods and behavior.  It is not easy, but do it anyway!

Please check out my online store http://www.hellocourage.com by clicking on the hats! Many great summer sun and swim hats for everyone, not just cancer patients!

CollageJune2015swim

Adriamycin Cytoxan AC Chemo – Understood Less Than Five Percent

My only sibling, my sister, Diann just had her first Adriamycin Cytoxan (AC Chemo) Infusion this past week for Stage 3 Breast Cancer.  This drug is so hard it is called “Red Devil” and “Red Death.”  It was beyond challenging for me to watch her get the tubes of Adriamycin Cytoxan pushed into her veins in the same chemo chairs that I was sitting.  Five days into her first infusion, Diann called me with deep emotion in her voice.  “Denise, I owe you an apology.  I’ve been thinking about this.  I had less than a FIVE PERCENT understanding of what you were going through during chemotherapy.”  Lessthan5%graph

Looking at that graph put things into perspective for me.  Now, Diann was with me often during my own chemo struggles – she was there for Mastectomy surgery, for port placement, several times to infusion, to Oncology checkups, she cleaned my house, she drove me places when I was too weak to do so, and she called me several times a day every day for the duration of my treatment.  And after all that, the fact that she understood what chemo was like less than 5% amazed me and brought much clarity.

If you are going through Adriamycin Cytoxan Chemotherapy or any chemotherapy right now — be encouraged when family, friends, and strangers say what seems like stupid stuff to you, don’t offer to do anything to help you, or ignore you out of their fears. Remember my sister’s words:  “I had less than a FIVE PERCENT understanding of what you were going through during chemotherapy.”  Perhaps it is your husband, your child, your mother or your best friend who has abandoned you.  Try to give them the benefit of the doubt, because they absolutely have no idea what you are going through.  Chemotherapy is one lonely road.

My words to women going through Adriamycin Cytoxan Chemotherapy always include this:  “No one can understand what you are going through no matter how kind or compassionate they are unless they have been through it.”  My trusted sister’s words to me made this even more clear.  I hope it helps you as well.

Diann has amazed me thus far exhibiting a determination and strength that make me wonder if I had half of what she has.   I was always been a medical sissy up until cancer, so her stamina has shocked me!  Diann has what it takes to get through Chemo. But it is just so damn hard.  Diann is more than strong.  She has been going into work for 5 hours per day on weekdays, has already learned you have to store up what little energy you have, and have to rest or you will just pass out in a heap.  She told me she felt like a little child today when she either had to lay her head on her desk and sleep or go home. She went home.  Diann has learned that you have to save up all your energy for the day to just stop for milk since going to a grocery store seems almost impossible.  This morning she told me she thought about a small grocery store in her neighboring town that is about one-fourth the size of the mega grocery stores.  Diann was excited to see if she could pick up orange juice and bread and felt that store might come in very handy.

If you are going through chemo, you definitely understand about how daunting grocery stores seem!  You will make it through!  You and Diann can do this.  You can get to the other side.  If you feel like giving up today, keep going.  Tomorrow will be better.

_____________________________________

Diann will be shaving her head after her next infusion since on average the hair starts to go 14 to 17 days after chemo begins. Thankfully, she has a good selection of caps and scarves from my online store  http://www.hellocourage.com to get her through her bald days. I told her being bald will be better than she imagines. Thinking about it is the most difficult part.

Redemptive Suffering, Breast Cancer, and TEEN Magazine

Anyone remember TEEN Magazine from the 1970s and 1980s?  In it, they had a section for Pen Pals. Even at age 16, I had an interest in writing to people from all over the world, so I asked for a Pen Pal from Australia.  At the same time, a 16 year old girl from Australia wanted a Pen Pal from the USA.  And thus my almost lifetime friendship with Helen began.

Helen and I wrote countless times through our teenage years exchanging stories about our countries, our families and our lives.  Whenever Helen’s letters arrived, I immediately ran to open them and see what new adventures she could teach me as Helen grew up in the middle of the Australian Outback!

When I was in my early 20s, Helen wrote and said she was going to visit the USA, could she come to visit me?  We were both thrilled that we would finally meet.  It was so much fun meeting this friend as it felt like we had known each other forever.  After her visit drew to a close, Helen shared the bombshell with me that she was discerning a call to be a nun – and not just any nun!  A contemplative nun in a cloistered monastery where prayer is their main ministry.  I was shocked!!  Even though I was a practicing Roman Catholic, I found it hard to believe that this young woman that often talked with me about normal teen and young woman stuff – LIKE BOYS – was going to be a cloistered nun!  Helen did discern that she had a calling.  We wrote through her transition from Postulant to Nun, and so my Pen Pal exchange has continued with now Sr. Helen for all these decades.

Sr. Helen is in a lovely monastery in Australia.  Although I’ve never been there, from her vivid descriptions and pictures she has sent, I feel I have.  The nuns in her community prayed for me all the time I was going through breast cancer treatment.  And ironically, one of their Sisters was going through Breast Cancer and chemo almost simultaneously with me.  Literally, I felt their prayers.  One of their sisters uses email and  the internet on behalf of their community, so I was able to keep them posted with my progress.

The Sisters prayed for my mom and her breast cancer diagnosis.  And then when Diann, my sister, was recently diagnosed with Stage 3 breast cancer, one of my first emails was to Sr. Helen’s community to ask them to pray for Diann.  I knew without a doubt that my old friend, Sr. Helen, would make sure that happened and would pray faithfully for Diann and all her family!

Yet another day arrived I had been dreading for Diann:  Her post-surgery consult with her breast surgeon and first meeting with her Oncologists to discuss pathology, her chemo schedule and treatment plan.   Standing in the driveway, getting into my car, the postal truck pulled up and my familiar and friendly carrier handed me my mail.  Immediately, I spotted a letter from Sr. Helen.  Sr. Helen’s Aerogramme’s with a beautiful Australian stamp have looked much the same for these 40 years!  Eagerly, I stuck it in my purse to read LATER as I got in my car to pick up Diann for the all too familiar 120 mile round trip trek to Ann Arbor, Michigan.

LATER came while I was waiting for Diann while she was in a medical test.  My compassion for Diann, what she was going through, and my fear of the appointments that lie ahead were overwhelming.  Sitting at the Cancer Center at University of Michigan, where I have spent more time than many of its employees,  the weight of Diann’s diagnosis, my mom’s, my own, and my father’s death from pancreatic cancer seemed absolutely unbearable to me.  My heart was filled with tremendous grief, and I felt overcome with emotion and fear for Diann.  My suffering seemed more than I could bear.   In an attempt to distract myself from my emotions, I reached for the 6-month old Christmas Good Housekeeping magazine lying on the waiting room table while making a mental note to  donate current magaines on my next trip.  Then, thankfully, I remembered Sr. Helen’s letter.

Opening the letter, Sr. Helen’s words were balm for my breaking heart, and I knew God was speaking them directly to me.   I believe you will find great meaning in Sr. Helen’s words no matter what your religious beliefs:

My dear friend Denise,

…When Sister brought your email to me while I was cutting the altar bread sheets (into round hosts), I knew it held bad news with such a delivery.  While I wait for the sheets to dampen down in a large humidifier, I do my spiritual reading.  The book I was reading on that particular day was Austen Ivereigh’s book, “The Great Reformer – Francis and the Making of a Radical Pope.”  Just before your email arrived, I had read about Pope Francis’ suffering when he was 21 and had part of his lung removed.  His mother and others were telling him to displace his thoughts, it will soon pass, etc., which was NO HELP AT ALL.  It was only when his old high school teacher, Sr. Dolores told him that “with your pain you are imitating Christ” was he able to find peace.  What had been pointless, was now redemptive.  The pain was no less, but bearing it became possible.  Later in the book, Pope Francis is quoted as saying, “Christ’s suffering on the cross was intensely lonely.  In any deep suffering, physical or spiritual, what a person needs is people who love them, who respect their silence, and who pray that God may enter into that space which is pure solitude.”   Ivan Ivereigh also quotes Victor Frankl (Holocaust Survivor) “…the secret to enduring great suffering is not to try to imagine its end, but to find meaning in the present.”

Denise, I KNOW you can resonate with this.  I cry with you concerning the breast cancer diagnosis of Diann.  And Diann’s anxiety must be great as she knows what you went through.  We are praying that her ordeal will be kinder.”   My love and prayers, Sr. Helen

I marveled at God’s timing, because as I read Sr. Helen’s letter, my fears literally vanished. Pondering what all it took to get to that precise moment – my email magically going across the globe to a nun’s computer at a cloistered monastery, arriving on a different date than when it was sent although only seconds apart, the perfect timing of the hand delivery of that email to Sr. Helen, Sr. Helen reading a beautiful book with just the right words to write to me with her great spiritual wisdom, and her letter arriving via snail mail at precisely the time I needed it.

And so TEEN Magazine circa 1972, thank you for matching me with my Pen Pal, Helen, from Australia.  God does indeed work in mysterious ways.

Traveling Ahead of My Sister and Her Breast Cancer Diagnosis

Many of you are writing asking updates about my sister, Diann, who was recently diagnosed with Stage 3 Breast Cancer – ER+ PR+ Her2Neg.  Diann just had a Lumpectomy with Lymph Node Dissection – margins cleared, awaiting final pathology report about how many positive nodes.  Diann will begin chemotherapy the first week of June.  It has been a rough month for Diann and those of us who love her.  She was scanned, scanned and scanned again.  Because of scans, she had to go to a kidney specialist in between all the breast stuff.  But fortunately that was “watch and wait.”

Observing someone you love cope with cancer, makes you realize what they are made of and how they handle extremely stressful situations.  Diann has amazed me with her fortitude, courage, and hope.  Raising three kids as a divorced mom, she has reservoirs of strength that amaze me.

Many women absolutely hate the word “journey” related to a breast cancer diagnosis as often they would like to save that word for more pleasant times, like a vacation.  I’m one that happens to think the word “journey” is very appropriate. Breast Cancer takes you places you never thought you would be, there are many valleys and some mountaintops, and the road is very, very long.  Sometimes it is a straight road, but other times it is winding and you cannot see around the next corner.

So in pondering “journey”, this same imagery keeps going through my head.  I feel like this is a modern-day version of two sisters going west in a Conestoga Wagon at different times and in between our mother made the trip, too.  Necessity forced me to blaze a trail west into unknown territory.  Our mom had a relatively easy trip.  But now it is Diann’s turn to head west.  ConestogaWagonThe modern-day version comes into play because in our western journey, we have cell phones.  I am able to warn her of trails to avoid and trails to take, but it is still her trip west and her wagon is equipped differently than mine.  And Diann is in charge of her wagon. She will end up on different roads than I took, some by choice and some by happenstance, and all I can do is offer advice when asked and keep quiet when not asked.  And let me tell you, that is no easy task for me!

For example, her daughter, Danelle and I are in recovery with Diann post surgery, and the nurse is going over post surgery information.  It seemed like she was reading a novel, and it was taking forever.  We were mentally and physically exhausted, and our blood sugars were running low.  The nurse told Diann that her arm may be numb because of the cutting of the nerves from the lymph node removal, but it will get better.  Rather than just shutting up, I blurt out, “Heck no it won’t get better.  My arm is still numb three years later.”   I could have chosen better timing for that truthful remark.

And so we all learn as this new journey begins…

_______________________________

In honor of a new journey, http://www.hellocourage.com has a new logo:

LogoHelloCourage2015

My Sister’s Advanced Breast Cancer Diagnosis – Dense Breast Tissue the Culprit

My sister, Diann, has Stage 3 Breast Cancer – a 3 cm tumor that has infiltrated to at least four (4) lymph nodes.  We were shocked as it was so much more advanced than we thought.  The culprit of not finding it sooner – DENSE BREAST TISSUE.

Anyone who has read my blog for any length of time knows I am constantly preaching about DENSE BREAST TISSUE.  If you have it, you can be Stage 4 before you know anything is even going on as often tumors are not picked up on mammograms. Dense breast tissue appears white on mammograms and so do tumors.  I’ve heard from COUNTLESS women about this fact many have gotten their yearly mammograms and got the all clear right up until diagnosis.  Now, my own sister had dense breast tissue, didn’t realize it and was told only once by our family doctor back when she was having children in her 20s and 30s.  She really did not know what that could mean for her and was never told.  On her regular mammogram, which was a 3D technology/tomosynthesis mammogram which is supposed to be better at detecting tumors in dense breast tissue, an area of compressed tissue showed.  That’s all.  THANK GOD our local hospital biopsied, not because they thought it was cancer, but based on family history of my diagnosis and my mom’s diagnosis, they wanted to make sure nothing was hiding behind that area.

Well, hiding it was.   Diann’s breast surgeon at the University of Michigan says it is a 3 cm tumor (well over an inch in diameter), and she could not even feel it in my sister’s breast, and Diann is a B cup.   I mean that seems almost impossible to believe!   Diann said because of me, she gave herself breast exams weekly as she was so paranoid.  She never felt a thing.

Now Diann is forced to endure surgery, chemotherapy, radiation – thankfully, she was Her 2 Negative, so she will not need Herceptin.  They will do a Lumpectomy first, then treatment, then after the genetic testing comes back, she may opt for a double mastectomy with immediate reconstruction after everything else is finished.

This makes me MORE DETERMINED to get the word out there about dense breast tissue.  It is not something easy to talk about it.  If you post it on Facebook, some uninformed men make lewd comments – I have had it happen.  But the discussion is necessary.  Your life depends upon it.

This from breastcancer.org about dense breast tissue:

Dense breasts have less fatty tissue and more non-fatty tissue compared to breasts that aren’t dense. One way to measure breast density is the thickness of tissue on a mammogram. Another categorizes breast patterns into four types depending on which type of tissue makes up most of the breast. Still, no one method of measuring breast density has been agreed upon by doctors. Breast density is not based on how your breasts feel during your self-exam or your doctor’s physical exam. Dense breasts have more gland tissue that makes and drains milk and supportive tissue (also called stroma) that surrounds the gland. Breast density can be inherited, so if your mother has dense breasts, it’s likely you will, too.

Research has shown that dense breasts:

  • can be 6 times more likely to develop cancer
  • can make it harder for mammograms to detect breast cancer; breast cancers (which look white like breast gland tissue) are easier to see on a mammogram when they’re surrounded by fatty tissue (which looks dark).

Twenty-two states have laws that say women who have dense breast tissue must be notified.  Obviously, this doesn’t always happen.

So what to do?

1)  Ask the question of every health care provider you have if you have dense breast tissue.

2)  If you have dense breast tissue, even if your mammogram comes back okay, INSIST, INSIST, INSIST on an ultrasound.  Call your insurance company.  Tell them you have dense breast tissue.  In most cases it covers.  If it doesn’t, ask to talk to a Supervisor.  If you can’t get them to pay, do it anyway.  Make payments.  Your life is worth it.

3) If anything is questionable on the ultrasound, INSIST, INSIST, INSIST on further testing.  What is further testing?

A breast MRI or the newest technology – Molecular Breast Imaging (MBI).  I just wrote about this technology in February, 2015 as recent studies have shown it quadruples detection of breast cancer in women with dense breast tissue!!  https://denise4health.wordpress.com/2015/02/04/molecular-breast-imaging-mbi-quadruples-detection-of-breast-cancer-in-women-with-dense-breast-tissue/

PLEASE, I beg you, have this conversation with your doctors, with your mammogram provider, and with your friends.  It is absolute hell to watch my sister go through an advanced breast cancer diagnosis.  It is far worse emotionally than my own diagnosis was.  You do not want any one you love to go through this when it could be prevented.

Breast Cancer Strikes My Family Again

My only sibling, my sister, Diann – not just my sister, a best friend to me, a confidant, a mom of three, a young grandma, was diagnosed with breast cancer this week at age 55 – the same age I was when diagnosed.  I am  absolutely devastated as is the rest of my family, especially her kids.  As many of you know, my mom was diagnosed just last June, 2014 with breast cancer.  I was diagnosed in October, 2011.  We are all that is left of our nuclear family.  My dad died from pancreatic cancer at age 65.   Especially, I feel for my 81 year old mom who lost her husband to cancer, is a breast cancer and melanoma survivor herself, and now is now forced to watch her second daughter fight breast cancer.

Diann and I took one look at the doctors face as she entered the room, and we knew before she told us.  As we sat in the same place at our local hospital where all of us received “the news”, no one could believe it, including the nurses and doctors.  I feel so distraught, more than I did with my own diagnosis.

So once again we are forced to face this.  The only thing that makes it easier is we know what to do and who to call.  My Oncologist agreed to take Diann as a patient even though he is not currently accepting new patients, and my mom’s surgeon will perform whatever Diann needs for surgery.  We will be putting thousands of miles on our cars making the drive to the University of Michigan Comprehensive Breast Care Center in Ann Arbor, Michigan.  The geneticists at University of Michigan thought it was a fluke that both mom and I got breast cancer.  When we made the first call to the Breast Care Center, the nurse said, “I have already put the geneticists on alert.”

It baffles me because family trees on both sides of the family have been done back generations, and no breast cancer on either side of the family.  How did three of us end up with breast cancer???   Did the relatives just die young before they were diagnosed.  Did they have huge tumors in them when they died of something else?  Was it environmental?  Did I grow up in a cancer cluster?   Was the electric tower across the street from my neighborhood the culprit, or what?  The questions keep swimming in my head.

My sister and I are very different.  She is very private, while I didn’t hesitate to blab my cancer journey to the world.  Diann trusts her doctors and doesn’t want to read much about her diagnosis (although she will not know much until next week).  I read everything I could, and in retrospect, most things I should not have read.  Diann likes to stay busy and will probably try to work as much as she can during whatever treatment is necessary for her, while I had to process things more quietly.

Diann will have to face this journey alone as it is one lonely journey as many of you know firsthand.  I already promised her I will not try to force my way of handling breast cancer unto her, which as the older sister, is always my temptation.  Everyone keeps telling us it is good Diann has me to help guide her.  That may be true to some degree, but every cancer journey is entirely different.   Certainly, I know this from hearing from thousands of cancer patients.  I’m just so angry…I didn’t want Diann to be one of them.

My family would appreciate your thoughts and prayers.  So many of you are like family to me and have become friends over the years…Thank you!!