Cancer SurvivorSHIP – Adapting and Adjusting

An out-of-town friend who is in the midst of chemo now for Breast Cancer, wrote and told me, “I just cannot wait to get my life back.”   I cringed and of course, did not have the heart to tell her that your old life as you  knew it is gone.  She will find that out soon enough as she continues down the path.

My sister, Diann, is discovering that right now.  She is now 6 months out of chemo and 2.5 months out of Radiation.  Her hair is coming back and looks like a cute, short cut.  To outsiders, she looks “normal”.  But adjusting to life after cancer is challenging.  You are not the same person you used to be, you feel angry that you cannot get your old life back, and you have no idea what the Cancer Survivor Life looks like.

While Diann was sharing her feelings with me, I remembered this Blog Post I wrote while I was trying to find my way after treatment.  Diann said it exactly describes what she is going through and was helpful to her, so I am sharing this post below.  If you are not a cancer survivor, it is worth the read as it perhaps will challenge you just a little!

Original Blog Post from 2013– Perhaps you landed here because you are a Cancer Survivor and are having difficulties.   Or maybe a spouse, parent, or loved one had cancer, and you do not understand why they are having such a difficult time adjusting to life after cancer treatment.

Six months into being an “official” Cancer Survivor, I made this realization:  Life is not going to be what it was before the cancer diagnosis.  Somewhere in the back of my mind, I believed that someday, somehow, everything would shift and it would be business as usual, and my pre-cancer life would come back magically.   I kept waiting for it.

This all started because one morning as I was donning my Lymphedema gear, taking my medicine cabinet full of pills and supplements, trying to walk because of the severe pain (side effect of the drug Arimidex), and inserting my prosthesis in place of my amputated breast,  it finally hit me that “this is the way it is going to be and you damn well better get used to it.”

I was praying and asking for guidance about what I need to do so I can move forward and not stay stuck. The big, burly, bearded husband of television  Southern cook, Paula Deen, popped into my head.  Why is he in my head, I wondered? I don’t even know his name!  So I googled “Paula Deen’s husband” and interestingly, I found out his name is Michael Groover and he is a Harbor Pilot.   Hmmm, I thought, what does that mean for me?

I found this definition and explanation:   A harbor pilot, often known as a maritime pilot, is a boat pilot with specialized knowledge of a particular port or harbor. The pilot is needed to direct large ships into a port where there are specific deep water channels surrounded by shallower flats.     Without the services of a harbor pilot, docking ships would become a big hazard. There would be a real chance of running aground and damaging the ship and the cargo.   It’s precision work, and as with the many steps and players involved, safe docking and undocking is crucial to the ultimate success of the voyage. 

HarborPilot2Wow, I need a Harbor Pilot to help me with this part of my journey as I do not have the knowledge or tools to navigate these unchartered waters of Cancer SurvivorSHIP.  While I was out to sea in cancer treatment world, my medical team did all the captaining of my ship.  Now, I needed someone experienced in the hazards of maneuvering my ship into this new port.  And it is okay because I have never been here before, and it is all new to me.

A friend had told me a former pastor of mine from 20 years ago, who was a gifted counselor and a cancer survivor, would be glad to speak with me.   He is a survivor of a rare cancer.  He was not expected to live, but 4 years later, he is still here and celebrating life.  We shared cancer stories.  And when I heard about all that he had to deal with on an everyday basis because of all the damage done because of Chemo and high dosages of Radiation, it was inspiring and uplifting.

He then listened to me and was able to immediately assess where I was on my survivor journey.  “AA” he said, “Adapt and Adjust.”  He told me that the biggest learning curve for him in the past 4 years was adapting to what he can do, eliminating what he cannot do, and adjusting to new, yet exciting ways to live life. 

Two simple words, but because he has been there, he knew exactly what I needed.  He is a Harbor Pilot.    The imagery of my Cancer SurvivorSHIP coming into a new port, with new things, new possibilities, and new opportunities resonated with me.  Sure, in order to adapt and adjust, I have and will have to give up things that I can no longer do, no longer take care of, or that no longer serve me.   But I have, I can and I will. For the first time in a very long time, I felt real hope and not manufactured hope!   There is a big difference.

If you are a Cancer Survivor, please take time to focus on those simple words – adapt and adjust.  Perhaps, like me, you have been waiting for life to go back to the way it was before cancer.  Unfortunately, it will not go back.   But with some adapting and adjusting, you can be ready to accept the new life that awaits you.  Also, look for a Harbor Pilot to help guide your way to this new port – a support group, a counselor, or someone who has been there.  You cannot navigate these treacherous waters alone.

If you are not a Cancer Survivor, I’m not going to let you off the adapting and adjusting hook!  Perhaps it is time to review your life and see what you are holding onto that no longer serves you.  Oh, there can be many things:   a job, a relationship,  a certain way of doing things, a grudge, old habits, clutter, painful thoughts…the list goes on.  Time to adapt and adjust to new ways, new thoughts, new ideas, and new hope!  And if you cannot maneuver those waters of change, find or hire a Harbor Pilot to help you.




Lymphedema Awareness after Breast Cancer

March is Lymphedema Awareness Month.  I deliberately posted this on the last day of month because we all put Lymphedema at the end of the line in Breast Cancer.   As someone who lives with the realities and challenges of Lymphedema every day,  I am passionate about warning Breast Cancer Patients to PAY ATTENTION and get help and information about Lymphedema.  Now that my sister has recently finished active treatment for breast cancer and had many nodes involved, I am constantly warning her about Lymphedema!

Make sure you have attended a Lymphedema Class and  arranged a consultation with a Lymphedema Therapist immediately after breast surgery.  Preventative actions, treatment and knowing what to look for can help your future in a big way.    

If you even have had one lymph node removed, you can get Lymphedema. Surgeons and Oncologists may tell you otherwise.  Do not listen to them!  I have had plenty of letters from women who had been told, “Don’t worry, you aren’t at risk for Lymphedema” by a physician and then BAM!  Lymphedema hits in full force.  Some women have gotten this condition with no nodes removed, but that is more rare.

At the very LEAST, your preventative measures should include 1)  Wearing a fitted compression sleeve when you fly in an airplane – even for short flights;  There is other information out in googleland to the contrary.  Do not listen to it.  I have met two women who have full-blown Lymphedema after a quick air flight.  One had been 20 years out of cancer treatment!   2)  When you are lifting heavy items or moving heavy items, make sure to wear a compression sleeve.   3)  Lots of repetitive motion like shoveling snow, sweeping, mopping could be cause to wear a compression sleeve.  Pretending Lymphedema cannot happen to you does not work!

I got full-blown Lymphedema after lifting three heavy plastic grocery bags with my “bad” arm.  And I had been to all the classes and visited a Lymphedema Therapist.  That is all it took to bring it on and cause me to wear a compression sleeve and often a gauntlet every day for the rest of my life.  Here is a previous blog post I wrote about Learning to Live with Lymphedema that gives more information:

The following 10 minute, professional video entitled, “Breast Cancer’s Dirty Little Secret”  does a wonderful job giving more information about Lymphedema.  It is definitely worth investing the 10 minutes to watch!

Cancer Survivors Pictorial – How Cancer Changed Me

Frequently, I received emails from cancer survivors who ask these questions:  “Shouldn’t I be over cancer by now?” “Why do I feel worse years after fighting cancer?”  “Will I ever be normal again?”  Often they tell me how misunderstood they feel because family and friends do not understand why that are not “over it” and have not been able to move on.

Watching my sister, Diann, emerge from one year of active treatment for Stage 3 Breast Cancer, her story of change becomes more vivid as I watch her make the baby steps of getting to a new, different life and watching her discover who she is after treatment ends.

So I came up with a SIMPLE project that takes less than 15 minutes to do that will help give you an INSTANT picture of where you came from, where you are, and where you hope to be after cancer.  Doing this small assignment myself proved to be more valuable than therapy to me!

These are my directions:   go to the internet, magazines, or some other resource that you can tear out or cut and paste pictures of a theme that inspires you.  As you will see below, some of the women who did this assignment went with their interests – landscapes, flowers, birds, fabrics. Yours might be symbols, houses, boats, food – the sky is the limit!!   Find five (5) pictures that represent the following:

  1. Your life before cancer diagnosis
  2.  Your life during cancer treatment.
  3.  Your life after cancer treatment ended.
  4.  Your life as it is in the present.
  5.  Your life as you hope it to be in the future.
Here are the results of some of these cancer survivors’ projects:
From Melissa – an RN who lives in the Southern United States and loves flowers.  Melissa is a Stage 2 Survivor and 3 years out from treatment.  Melissa had SEVEN breast-related surgeries!!  Melissa has been through so much.  Her NOW picture is so interesting because in that photo she is looking up through those flowers as if she is a new bud yet still on the ground.  Here is Melissa’s story in pictures:
From Kelly  – who is 3.5 years out from Chemotherapy for Stage 2 breast cancer.  Kelly raises birds and relates to their beauty and habits.  In the midst of surviving cancer, her mom passed away.  Kelly’s story is quite fascinating – from L to R – Cardinal, House Sparrow, House Finch, Cat Bird, Blue Bird.   Kelly’s pictures are so telling because everything turned to gray from her colorful life before cancer, yet she has the hope of being colorful once again and taking flight!
From Diann – my sister, finished active treatment in January of 2016.  Diann relates to landscapes and their beauty.  Here is her story in pictures.    Particularly telling is the picture of the woman in the sandstorm all alone who can’t find her way.  I especially like her rainbow picture which shows she is feeling hopeful although the skies are still very dark.
From me – I chose fabrics because that is one more reason why I love my online shop for cancer patients as I get to see so many fabrics.  What was telling to me was my After picture which included my mom’s diagnosis of Stage 1 breast cancer then my sister’s diagnosis of Stage 3 breast cancer.  Clearly that picture said to me, “Here we go again!” and the up and down repetition of that fabric.  My Now shows a bunch of colorful symbols but they are still not yet fully woven together – it is colorful yet fragmented.
Seeing these pictures clearly defines why it is not possible to put cancer fully behind you as it is incorporated into the “fabric” of your being.  Just knowing that and being able to live with that fact, is extremely healing.
I urge you to try it it should prove to be very meaningful.  If you are willing to share your photos with me, I would LOVE to see your story.  Feel free to Email them to me at







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.


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, 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!


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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…

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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


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.