Radiation, Left Breast Cancer, and Deep Inspiration Breath Hold

My sister, Diann, recently finished Radiation for Stage 3 breast cancer of the left breast.  One reason she drove 120 miles round trip daily for 7 weeks was that a newer technology called “Deep Inspiration Breath Hold” was available.  This technique helps protect the heart and lungs from radiation while the left breast area is being treated.  The patient dons scuba-like gear and has to hold their breath for 10 to 25 seconds periodically during the radiation process so the chest wall pulls away from the heart and lungs and thus, the radiation stays away from the heart and lungs as well.

When I had radiation three and a half years ago, also for left breast cancer, I did not have this, nor did I know it existed.   This is a marvelous breakthrough to help women prevent heart and lung damage.  I suffer from both heart and lung damage from cancer treatment, so I am grateful my sister was able to have this technology.

If you need radiation for left breast cancer, I would URGE you to seek out this type of radiation treatment.  It will most likely take some research on your part, but it will be well worth it.  I hear from so many women that have heart damage years later because of radiation damage.  Just this week, I spoke to a 77 year old woman who needed a valve transplant due to damage 10 years after radiation for left breast cancer.

This picture of Diann shows her with the apparatus– the interactive device between patient and radiation.  Notice the glasses as well.  The patient interacts with the radiation technicians and the computer screen which is visible to the patient through the glasses.

IMG_0766

Deep Inspiration Breath Hold Radiation Left Breast Cancer

 

This following is a terrific video from the United Kingdom that explains in simple terms more about this technology.   PLEASE take this into consideration before you get radiation for left breast cancer!

 

Pity Parties – When to Have Them, How to Stop Them

If you have found yourself having daily Pity Parties, it is time to change it up. If you are in active treatment for cancer, experiencing great loss, or any other devastating blow, Pity Parties are necessary and keep you sane.  But if you have had constant Pity Parties for years, and they are a part of your daily routine, it is time to change it up and do something positive for yourself!

After going through two years of treatment for Stage 3 breast cancer with heart complications and then Lymphedema, I tried to have only occasional Pity Parties.  UNTIL, my 80 year old mom’s diagnosis with Stage 1 breast cancer.  I had to rethink my plan for how often Pity Parties were allowed.  While still rethinking it, my only sibling, my sister, Diann, was diagnosed with Stage 3 breast cancer!  Three family members in three years about did me in, and I wasn’t sure what to do about it!

pity partyI knew that if I didn’t want to turn into a depressed basket case, I would have to give of myself even more, beyond my Blog and http://www.hellocourage.com, my online store for cancer patients.  But I knew I needed it to be easy.  I couldn’t take complicated or be over  committed for my health.

My mom, sister and I have been to the University of Michigan Cancer Center collectively over 200 times.  They saved our lives and we have nothing but glowing things to say about our physicians and caregivers.  It is an honor to be a patient there, and we all chose to go there. However, it is a 120 mile round trip so it’s been like driving from New York City to Los Angeles almost 9 times!  Okay, indulge me for a Small Pity Party.  When I hear someone complaining because they had to wait an hour for their general practitioner on their one and only annual checkup appointment, to be honest, I want to choke them.  Okay, snap out of it, Denise, get back to your story!

I decided that I needed a simple attack.  Since I dreaded spending so much more time at the Cancer Center,  my plan was to engage a cancer patient in conversation every time I had to go to the Cancer Center.   I prayed for guidance so I know which person  I should speak with, and often that guidance is just the pick of the empty chair available and who happens to be sitting next to me.

Here are just a few of my conversations:  Herb, a 50 something guy who was told he had less than 6 months to live with Esophageal Cancer.  He changed hospitals, and now Herb was at the Cancer Center for his bi-annual checkup – HE IS ALIVE 9 YEARS and cancer free!!

Then there was Barbara –  She was diagnosed with Stage 4 Breast Cancer out of the gate with bone metastases.  She was in her  50s at the time.  That was 17 YEARS AGO!!  She has never been without cancer that entire time, but she has had treatment after experimental treatment and was now in her 70s!!

Meet Doug, the 28 year old determined and energetic  newlywed with testicular cancer that was in the adjacent chair while my sister was receiving chemo.  He had only been at a new job for two weeks, when he was diagnosed.  His new boss said, no worries, we will make this work.  That made me cry as I hear from so many people who lose their jobs after being a faithful employee for years because of a cancer diagnosis!

Denise the early 50s extremely inspiring pancreatic cancer patient who was living life to the fullest even though she knew her days were numbered.   Robert, the 85 year old melanoma patient on a trial chemo drug because he had more life to live.

Today, I accompanied my sister to her 25th Radiation (she is getting close to being done – hooray!),  and I noticed a man holding his head and sort of napping in the waiting room.  He looked in pain.  I knew he was the one today!

As we began to converse, Tom told me his story that he was diagnosed with an extremely rare sinus cavity cancer that was inoperable.  He was in a clinical trial so he could help others in the future.  This necessitated him to stay for four months away from home at a facility called the Wilmot House in Ann Arbor for long-term radiation patients.  He was receiving radiation and chemotherapy simultaneously.  While telling me his story, he began to choke up and tears rolled down his face.

It has made such a remarkable difference in my attitude when I have to go to the Cancer Center yet again, as I now think how blessed I am to hear all these amazing peoples’ stories. Hopefully, I can bring them a tad bit of hope just because I am a Cancer Survivor and have been there!!   I carry these precious people in my heart every day, so whenever I start sinking into Pity Party Mode for whatever reason, the thought of them snaps me right out of it!

I challenge you — if you are engaging in ongoing Pity Parties long after your pain, you must change it up or it will consume you forever.  Here are some tips to help you move forward:

  1.  Write down what the chatter in your head is constantly saying.  Sometimes you can overlook it, as playing the negative has become such a habit.  Write as many pages as you need to and look at the reality.
  2. After looking at the cold, hard facts, make a list of 5 things you could do to change your life in a positive way.  For example,  my friend, Linda, took immediate action when her only child went 1,000 miles away to college.  Linda was devastated, but she knew she would sink into a great depression so she began to work full-time with autistic children.  Linda had not worked full-time in over 18 years, but she knew it was time to take action.  Gone are the Pity Parties from Linda’s life as she is so much enjoying her new rewarding and very fulfilling career.  Linda is thrilled her daughter is thriving in college.
  3. Ask for help – if it is all too overwhelming and you have no idea what to do first, seek the immediate help of a licensed counselor, Psychologist or Psychiatrist.  Just relaying your story to someone who understands will help move you forward.

Take action, make that change – you know what it is – just do it!  I guarantee your life will be better because of those changes!

________________________________

Check out the cute winter hats at http://www.hellocourage.com on sale now!

 

 

 

 

 

 

 

 

 

God’s Guidance…Providing Hope during Cancer Treatment and Trials

There is much Divine Guidance along the cancer journey for those who can listen in the midst of the fear, anxiety, great suffering, and grief.  It has been much easier for me to see this while watching my sister, Diann, navigate the rigors of cancer treatment than it was for me to see it when I was going through it.  Now I am an observer, not the patient.  I had just as many occurrences, but often it was difficult to believe in them.  Now as a caretaker for my sister, I have had a ringside seats to many of these “Divine appointments and occurrences.”  There have been so many to bring hope in the midst of great darkness.

During the past 8 months during  Diann’s diagnosis, surgery, chemotherapy and radiation which is beginning this week, I learned God shows up in different ways for different people.  My experiences were more traditional.  And my sister’s were more non-traditional.  Just like our personalities and beliefs!

I observed it when my sister was newly diagnosed, and she knew immediately she wanted to get treatment at the out-of-town cancer center where I had treatment.  We met with the insurance navigator at the major cancer center.  In the weeks before diagnosis, my sister had been in the process of switching to an Obamacare health insurance plan before she had her mammogram, not suspecting any breast cancer.  A series of “strange events” kept her from signing up – like the insurance agent got the flu, she had to work late and couldn’t meet with him, and this went on and on over the month’s time previous.  Had she signed up and let go of the insurance plan she had, she would not have been eligible under the Obamacare plan to seek treatment at the cancer center where she knew she had to be. By remaining on the plan she had, she had coverage at the cancer center of her choice.  Thank goodness for those delays!

On the day of my sister’s pre-op appointments, an extremely stressful day, another strange series of events landed us at a Holiday Inn for lunch.  We were delayed during lunch because the waitress was very friendly and extremely  chatty!   Upon exiting the hotel restaurant, my mom, sister and I all decided we needed to use the restroom before the 70 minute drive home.  The hotel lobby restroom had a handwritten CLOSED sign scotched taped to it with an arrow pointing us down the hallway of the hotel.  All three of us missed the second clearly-marked restroom.  Instead, we kept walking and walking and walking, and I was pretty irritated I must say when we ended up in the hotel’s conference center area.   Unbeknownst to us, an extremely spiritual woman named “Mother Meera” from India was at the hotel for a prayer service in a rare United States appearance. An appearance, later we found, that was not only rare but very difficult to get tickets to attend.   Just her gaze has been known to heal people.  Diann and my mom were standing in the hallway unaware what was occurring as we waited for the single-stall restroom to empty.  Just then, the diminutive Mother Meera left the auditorium escorted by a hotel guard, walked by my sister and mom.  Then Mother Meera stopped and just gazed at Diann before leaving the area. Later we found out about the significance of that encounter and why we ended up in that unusual place!

Every time Diann got extremely discouraged during chemo, she would either sit next to someone in blood draw or another chemo patient would be placed beside her during chemo.  Almost weekly, whatever she was struggling with, the other person had been through it and gave her encouragement.  It was beyond amazing!!  Hope showed up just in the nick of time!

Recently,  I turned on Good Morning America which I rarely watch.  Robin Roberts caught my attention as I thought how good and healthy she is looking after all of her cancer trials.  Just then, the phone rang and it was Diann.  She was in the midst of the many side effects from her last chemo a few days previous.  Diann was feeling extremely discouraged and felt like the suffering would never end.  Trying to cheer her up, I told her about Robin Roberts,  the Good Morning America journalist who went through cancer twice.  This was a conversation we had never had before.  I told Diann I had Robin’s latest book, “Everybody’s Got Something” as my friend, Anita, had given it to me as a gift.  Diann said she would like to read it, so I put it on my end table to remember to deliver it to her.

Within two hours, Diann sent me a link her away-at-college son had just texted her.  He said his college choir had just sung this song that reminded him of his mom and aunt and our fight for survival.   If you have not seen this musical video, it is very inspiring!!  If you need encouragement for anything challenging you are going through, this will help!  Diann and I both watched with our mouths hanging open!  Make sure you watch from the 30 second to the 45 seconds of the video and you will see why!

If you are going through much suffering, look for the signs of encouragement along the way…

CYBER Sale going on at http://www.hellocourage.com   Use Discount Code   CYBER for additional 20% off reduced prices on CHEMO HATS with FREE SHIPPING!

 

 

 

The End of Paclitaxel (Taxol) for Breast Cancer by Diann

Denise, Diann's son, Tyler, and Diann

Denise, Diann’s son, Tyler, and Diann

Special thank you to my sister, Diann, for writing this Blog Post to share her experiences with Taxol during her 5 months of chemotherapy for Stage 3 Breast Cancer.  She had her last Taxol on October 20, 2015     Denise

____________________________________

First, I would like to thank all the women out there who have written Denise, my sister, about my breast cancer diagnosis and sent your prayers and support. It means so much to me! This road is only understood by someone who has walked the same road!  I told Denise I thought I understood breast cancer treatment because I watched her go through treatment.  Going through it myself, I realize I had LESS THAN a 5% understanding of what extreme suffering a breast cancer patient goes through!

When my sister first asked me to write a blog post about my experiences with Taxol, I was a little hesitant as I had never written a blog post.  But, I will give it a shot.  These are my experiences with Taxol (Paclitaxel)- I had the 12 weekly dose version as my Oncologist said they have find there are less side effects by spreading it out.

I have found all of chemotherapy to be very trying. Adriamycin Cytoxan chemo did not treat me well. I felt like giving up. . Everyone told me Taxol would be better, and while it is better, it is not as good as I had thought it would be in my head! And because of that, I struggled with acceptance of the road I’m on.

I get chemo on Tuesdays. The thought of going and preparing for chemo is always worse than getting the actual infusion. After the infusion, I feel quite good and can go out to eat on the way home. I don’t sleep well on Tuesday nights though—I feel like I’ve had 12 cups of coffee! I’m told it’s  the steroids.  I am on an extremely low dose of steroids, the chemo nurses told me, however.  So I am grateful for that aspect!

Wednesdays I still feel pretty good, though fatigue hits after work. On Thursdays, I wake up fatigued, but I do go to work and manage about 5-6 hours. After struggling to get home, I’m in the recliner with my feet up. It seems like I live in that recliner.  Fridays and Saturdays are the same – living life from the recliner!

I watched Downton Abby, the award-winning PBS series to pass some of the time in the chair. So I pulled it up on Amazon Prime, and I watched all five seasons (like 50 episodes) in two weeks!  That tells you how much sitting I do!

I did have one Tuesday when I got the flu (vomiting, diarrhea, and a low grade fever). I was seeing the doctor that day for my infusion so I went, not knowing if the side effects I was having was the flu or just a side effect of chemo. They sent me to their cancer urgent care area and gave me 2 hours of fluids and meds to stop the diarrhea. No chemo that day! And the result was after the flu passed in a couple of days, I felt better than I had in months. This was a welcome break for me.

Here are the side effects I experienced during Taxol:

Heartburn often very severe

Extreme fatigue

Significant Coughing and mucous

Bloating

Some nausea and gagging

Chemo rash on my face

Constipation and diarrhea

Then even MORE Fatigue

High heart rate (110+)

Elevated liver enzymes

My blood counts stayed really good throughout Taxol, so said my chemo nurses.  I tried not to pay too much attention to them as it would make me feel worse!  Everyone is different in this area!

My Food Cravings:

During AC – hot dogs and onion soup (salt I guess)

During Taxol – Tomatoes, watermelon, more onion soup

I’m trying to drink 68 oz of water a day (especially the 3 days following chemo) and taking a regular Claritin daily. I’m hoping the water will flush out the chemo (I hate smelling it in my urine!) and the Claritin stops the cough I developed.

I do ice my hands and feet during chemo. I did this one for my sister! I didn’t want to do it because I would have rather reclined in the chemo chair and relaxed during the chemo infusion.  Denise finally convinced me it would definitely help me from losing fingernails and toenails, and maybe even help or stop neuropathy which is a common side effect of Taxol.  As of my last infusion,  I still have finger and toe nails with occasional numbness in my hands and feet which comes and goes.  My Physician’s Assistant said it is okay if the neuropathy comes and goes, but to let her know immediately if it stays.  So far, I am happy to report, it has not stayed.

Let me say I’m very happy to be closing the door on Taxol.  Wiith God’s grace, I won’t be back.

My next step is Radiation.  I will let you know my experiences with Radiation.

After Many Seasons of Suffering, Light Appears

Some days the stars align, and you know, not just hope, that God is in control.  That happened to my family today.  My sister, my mom and I have had hundreds of medical appointments over the last four years for treating breast cancer in all three of us. We have separately and together driven thousands of miles to commute to our cancer center in Ann Arbor, Michigan.  But on October 20, 2015, it culminated in six medical appointments within a few minutes of each other at the University of Michigan Comprehensive Cancer Center.  You couldn’t have planned it that way if you tried.  Some of the appointments had been made a year previously long before my sister’s diagnosis in March, 2015.

At 11 am, my sister, Diann, was receiving her sixteenth and final chemotherapy for Stage 3 breast cancer in the chemo infusion area after 5 grueling months, my mom was in an exam room for her 6 month check-up for Stage 1 Breast Cancer with Megan, our Physician’s Assistant, and I sat in another exam room with my (our) trusted Oncologist, Dr. Daniel Hayes for my semi-annual checkup which included a yearly mammogram.

The circumstances that led up to all of that happening at precisely 11 am at a busy cancer center were mind boggling.  None of it was planned as my sister had her last chemo postponed one week because she had the flu on an earlier infusion date.  My mammogram had been scheduled a year out and ended up being several weeks later than it should have been.  Mom’s checkup was changed and her appointment had been made 6 months earlier.  None of us realized that all of this was happening on one day and time until a few days prior to the appointments.

As we were leaving Diann’s house at 7:00 am in the pitch dark, Diann’s neighbor was out walking her dog with her sister who was visiting from out-of-town.  Her neighbor, also a cancer survivor, told Diann her entire church had been praying for her.  Then her neighbor introduced her sister to Diann.  Her sister’s name was “Joy.”

desertpictureAfter arriving at the cancer center, Diann and mom went to blood draw while I went to Mammography.  The blood draw area at the cancer center was packed. The tech you receive to draw your blood is randomly chosen out of many, many techs on duty.   Diann’s name was called.  The woman who would draw her blood on her last chemo infusion day was also named “Joy.”

Diann then went on to chemo, mom went to her appointment, and simultaneously in my exam room, Dr. Hayes had just reviewed my “CLEAR MAMMOGRAM” results from my remaining breast which had been administered earlier that morning.   Dr. Hayes questioned me, “Can you believe it has been four years since your diagnosis?”  I laughed and said, “I never thought I would be here four years later.”  Dr. Hayes sort of shrugged his shoulders, his body language saying he hadn’t been too sure either!   We have developed a doctor/patient rapport over the years and he jokingly said, “I should send you a fruit basket or something because of all the business you’ve brought us.”  I bantered back, “Absolutely you should.  I used to have a day away coming to Ann Arbor for medical appointments, now I have to bring the whole family with me!”

After test results, more appointment scheduling, reviews of Diann’s radiation schedule, a flu shot, the chemo drugs arriving an hour earlier than usual, and a myriad of future tests and evaluations for genetic testing, Diann, mom and I met up again in the blood draw area to walk together to the car.

While exiting the parking garage and handing over 50 cents to a new garage attendant,  I casually asked him, “Where should we go to lunch?  We have to celebrate my sister’s last chemo.”   Ann Arbor is known to be one of the restaurant capitals of the world, so I was expecting him to say somewhere close to the hospital.  Instead, the young man said that his favorite restaurant was 20 miles south.  I responded that we were headed south, so tell me the name of the restaurant.   He responded “Roy’s.”

In the car there was an immediate gasp, a knowing smile, and I saw tears fill Diann’s eyes.  You see, Roy, is the name of our beloved father/husband who died 16 years ago from pancreatic cancer.  My dad wanted us to know he, too, was in on the celebratory events of the day!

What a day of coincidences and good news.  Plus, two Joys and a Roy brought us much hope and encouragement!

______________________

speaking of seasons, check out the new hats arriving

for fall winter at http://www.hellocourage.com

PicMonkey Collage

The Two Kinds of Cancer Patients – A Survey – What Kind Were You?

Diann, my sister who is in the midst of chemotherapy for Stage 3 breast cancer, was settled into the bed at the cancer center as the Oncology Nurse, Erin, came in with the drugs. Erin had been Diann’s nurse a couple of times before, so Erin knew that we were sisters and that I was a breast cancer survivor who had been through chemo at her cancer center.  We had  developed a rapport with Erin. She said to Diann, “Your blood counts look good.”  Diann’s response:  “Great.”  I’m sitting in an adjacent chair and ask Erin, “Can she get a copy of her blood counts?”  The nurse smiles and hands Diann the copy.  Diann immediately hands it to me as she was not interested in looking at the numbers.

As Erin is hooking up the drugs, the steroid shots looks a little different than usual.  I say to Erin:  “What dosage is she getting today?”  Erin smiles at me and then gently laughs and says:  “You know, you sisters represent the two different kinds of cancer patients I see.  One is laid back and lets the nurses do the work and asks no questions, and the other kind needs to know everything going on.  Neither kind is better and as chemo nurses, we appreciate both kinds of cancer patients.”

And we all laugh!       firewater2

Diann and I have different styles – we always have, we always will.  I envy her style and she envies mine.  Well, she might not tell you that, but she has to, don’t you think?  But I believe she is the better patient.  She trusts her doctors, her nurses, and lets them heal her.   Certainly, I trust them, but I need to know details, facts, studies and statistics over the past 10 years.

Please answer the following poll – thank you!

New fall hats arriving daily at http://www.hellocourage.com

PicMonkey Collage

 

25 things to do for a Cancer Patient

I’m always being asked, “what should I do for a cancer patient??  My answer is always the same:  “It doesn’t matter what you do, but please do something!”  Every kindness is never forgotten.  Many friendships are lost because cancer patients are ignored during treatment.  Being 3.5 years out from Chemotherapy, I have never forgotten one kindness extended to me.  Watching my sister go through Chemotherapy, it becomes even more real. And I learn from my sister that many cancer patients are stubborn!  When I ask my sister, “What can I do to help you?”  her usual response is, “Nothing, I’m trying to act normal.”  Knowing firsthand, there is no normal during chemotherapy, I ask her:  “How is that working for you?”  Finally, I get truth from her when she answers, “Not very well.”

If a friend or loved one is going through chemotherapy, trust me, they can use some help and lots of it!  Here is my Top 25 list of ways to help:

1)  Offer to take them to Chemotherapy and give them dates that you are available to do so.

2)  Drop off muffins at their front door — most cancer patients can manage to eat a muffin.  Lower fat content is best.

3)  Money is always an issue with 98% of cancer patients.  Cancer is so expensive no matter what insurance they may have.    A grocery store or drug store gift card, no matter what the denomination, would be extremely helpful.

4)  Send greeting cards and send more than one.  One of my dear friends sent me a card every week for one year!!

5)  Flowers are always welcome but ask the florist to send the least fragrant kind.  Some cancer patients are not able to be around fresh flowers, so if in doubt, ask a family member before sending.

6)  Mow their grass.

7)  Drop a small gift at their front door.  Often the cancer patient is just not up for visitors.  But a small gift will bring much hope.  I found many a gift just sitting at my front door!  What joy it brought me!

8)  Offer to weed their garden or water their flowers during warmer months.  My cousin and her husband came and planted my outside flowers when I was too sick to do so.  Their kindness still brings tears to my eyes.

9)  Offer to pick up groceries for them.  Going to the grocery store is one of the most challenging things during chemotherapy.  A dear friend of mine called me every week to see if I needed anything.

10)  If they have children, offer to watch the kids, offer to take the kids to school, or pick them up for school events.  This is so helpful for moms going through chemotherapy especially on their worst days.  Moms going through chemo are the women I most admire!

11)  Drop off soup or a casserole for the family — if you are dropping off food for the patient, be sure to ask what they are able to eat.

12)  Send them a cute chemotherapy hat as a gift.  This will lift their spirits.  Check them out at my online store FBlogoI will include a gift note card and special gift wrapping at no additional charge.

13)  Pedicures and manicures are not allowed during chemotherapy because of the risk of infection.  If it is a close female friend, offer to paint her toenails or fingernails.

14)  Offer to clean their house for 2 hours.  Set a time limit because staying too long will exhaust the patient.   Cleaning is on the bottom of the list of things cancer patients are able to do.  Offering to sweep for them, dust for them, or change their bed clothes would be much appreciated!!

15) Do their laundry.

16)  If they have a cat, change their cat litter for them.  Chemotherapy patients are not supposed to change cat litter because of germs!  This is something I do for my sister on a regular basis which she greatly appreciates and so does her cat!

17) Many agencies offer services or food or money to cancer patients, but the cancer patient does not have the energy to pursue this.  Do it for them, but be sure to ask their permission!!

18)  Send a card to their spouse or significant other to show they are not alone. The cancer patient will so much appreciate your support of their caregiver.

19)  If the cancer patient needs constant care, offer to sit with the cancer patient to give the caregiver a break.

20)  Offer to fill their gas tank or wash their car!

21)  Tie balloons at their front door to cheer them up!  I will never forget my aunt tied a “Congratulations” balloon at my front door on my last day of chemo!  It still brings me joy to think of it!

22)  Send them a list of things you are able to do for them with your telephone number – let them know you are really serious about helping them.

23)  Ask them if you can research something for them – often older patients who don’t access the internet, don’t know things that will help them feel better during chemo.

24)  Take out their garbage, especially if they live alone.  I finally got my sister to admit this was extremely hard for her to have the energy to dump her wastebaskets and haul her garbage can and recyclable bin to the street for garbage pickup.

25)  Ask if they are up for a 30 minute visit.  Do not stay too long.  It is very tiring for the cancer patient, but a short visit helps lift the spirits!