Transition - Coming Home

September 26

We got back to North Carolina last evening and it is so different to be here.  Wisconsin was cool, fall was in the air.  Here it is warm and humid, back to shorts and a tee shirt.  On Friday I had a fire in the fireplace, here we need air conditioning.  It is amazing how things can change in one day.

The trip was relaxing; a lovely drive through farmland at the harvest and big city skylines, but the highlight of this drive is always the mountains.  I love the mountains with their strength and ruggedness, their shades of blue and green and brown.  The colors are barely starting to turn, but there were bright splashes of red, orange and yellow.  It was a bright sunny day for most of the trip, the perfect day for a drive.

As we entered North Carolina the sky became dark and then the rain came down matching my mood as we got closer to home.  I didn’t want to come back.  I already miss my friends and my home on Lake Michigan.  The fun and the vacation feeling of the last month was fading fast as we got closer to Mooresville.  I want to be sitting on the porch looking out at the eagles, not getting ready to do laundry and clean the house. 

The reentry from vacation back to reality can cause some unexpected tension.  Going from a time when the biggest responsibility is getting somewhere in time for dinner back to the responsibilities of running a house and having an organized life intrude on the peace and tranquility we came to expect during vacation life.  This can be stressful and in our case it led to a fight.

I’m not going to go into the details of the disagreements, but let me say that I felt taken advantage of while Gary felt unappreciated and insulted.  Both of us took things personally when that should not have been the case.   The positive feelings of the last weeks dissolved into anger and hurt.  Why does this happen?  Why does the re-entry shock bring out the worst in us?

My lesson here is that we were tired from the trip and ambivalent about returning home.  I loved the relaxed times with friends, the time the two of us had without the reality of life interfering.  On the other hand, I wanted to reconnect with my new friends in the south and looked forward to visits from northern friends and family from during the month of October.  It also was the transition from it just being the two of us to the added complication of Gary’s 28 year old son who lives with us.  There is a huge difference when a third person comes into the picture.  Being tired and newly in transition does not make for a good time to have discussions about conflicts and irritants.  We are hyper-sensitive and need to stay in more neutral territory until life settles in. 

The advice here is to enjoy the moment and then, give yourself enough time to make transitions and intentionally look at the positive side as you move into the next steps.   This is especially true when moving from a very stress free time into one where you have responsibilities and demands.  It is easy to get stuck on what is wrong when you’d rather be somewhere else, perhaps it is better for us to make a decision to look at what is right and celebrate that as we look at where we are, not where we've been.  Keeping our focus on those things that are good has another payoff, being positive is better for us on all kinds of levels.

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Friendship is the Best Medicine

September 23

As I pack the suitcases and empty the refrigerator, there is awareness that I am not the same person who came here 4 weeks ago.   The past few weeks of being back in the town where I grew up have led me to the absolute conviction that family and friends are the best medicine for whatever ails you.  Almost every day of the past month has been filled with visits and phone calls from and to those people who have been in my life for years and who know like no one else can.  My energy is better, I feel and look healthier than a did a month ago.

I have spent this time laughing, reminiscing, catching up, crying, and hugging.  People who I’ve not seen in years stopped by or phoned to reconnect, my family and dearest friends were there.  The weeks flew by so fast that there was not nearly enough time to see everyone who I wanted to see nor to do all that I wanted to do. 

It is so hard to leave!  The time here has reminded me that Kewaunee is my home, my roots are here and a part of my heart is attached to this community.  When I go to North Carolina I lose that sense of my history.  Those I see who knew my family back a generation or more, those who remember me as a kid, that is a part of being in my hometown.  The small town feeling that makes a community part of us is a difference from the feeling I get in the suburban araea where I don’t know any of my neighbors by name and don’t know a soul at the grocery store.  Here I not only know that girl checking me out, but I know her parents and grandparents and maybe even the name of their dog.  It is a different world.

So how do we create that sense of community and develop deep friendships in those areas where people are transient.  Can we build that “home town” feeling?  I hope so. 

This month has taught me how important friendship is to well-being.  There is an intimacy that comes from sharing a lifetime of memories and with it comes a depth of caring and trust.  However, I am not sure that the years of history are absolutely necessary for deep friendship.  Can that feeling of connectedness be developed without the years?   That will be the question to ponder and explore when I return to my new home in the South.

You are welcome to take the opportunity to comment on this blog

or leave a private email at jodiekacer@aol.com

Keeping it Positive

A previous entry looks at the negative side of communication, setting limits and clearly letting people know where we do not want to go. As reflected by a friend, it talks about how to stop and avoid those situations, but it does not address the positive side of changing those behaviors and helping others learn.  We can look at the “teachable moments” provided by someone who speaks from the place of their own fears and discomfort and we can give them the gift of awareness that will help them feel less awkward and more sensitive.

So how do we help others toward that awareness?  First of all, we can take the opportunity to provide them with information from the heart.  Letting others know what our comfort level is provides a good start.  For example, I am very comfortable sharing my own feelings and details about the diagnosis and treatment.  Questions about prognosis are more private for me because it is an area full of so many unknowns and pessimistic projections.  If someone drifts into an area I find too intimate or negative, I will use a technique I learned years ago called “dismiss and redirect.”  Saying “That is an area I don’t fully understand and am uncomfortable talking about (dismiss), what I do know is that this medication is considered very successful in my particular situation (redirect).”  I’m fine talking about treatment, predicting how much time I have left is something I don’t guess at. 

Another I’ve learned lesson is that humor is good.  Being able to laugh and see the humor in situations is healthy.  I remember my dad, during his last days with pancreatic cancer, telling me that he loved the nurses who came into his room with a smile and even some gentle teasing.  Those that he found less pleasant were the very serious and solicitous.  He wanted to enjoy life and part of that was not being treated as one who is dying, but as one who can see the bright side in spite of the illness.   

Helping others understand that this is another stage of life, that I am grateful for the richness of the 60 plus years that I’ve lived so far and that I intend to look at each day from here on in as a precious gift is part of what these conversations can also include.  Making illness a part of the life cycle and not a taboo or uncomfortable subject is my goal.  If we can graciously help people see that this is the next step of a full life, that it is full of lessons and full of opportunity, then we are being of service.  It is a scary time and it is filled with unknowns, but it is also a time of reflection, growth, and hope.  That is the message that I would like to share.

Advice:  That life is finite is something many of us do not want to accept or even think about.  If you wish to help others understand that they can speak of illness and the final stage of life with compassion and sensitivity, you must be compassionate and sensitive yourself as you guide them to a level of comfort.  Adding humor and changing messages to have a positive spin can also help.  An example here is when a friend saw me for the first time with the “chipmunk cheeks” of steroid use and her comment was “Well, you have puffy cheeks, but you no longer have wrinkles.”  We not only laughed, but it reminded me of how inconsequential those chipmunk cheeks were in the big picture.

What About the Loved Ones

Living with and loving someone who has cancer might at times be even harder than being the person with the diagnosis.  A former colleague, friend, and breast cancer champion expresses it this way:

One other thing that I realized through my journey is that those around us try to be good soldiers, the helpers, the people who will do everything they can for us. But, they are struggling too… in a very different way. No one can give them a journal of how to feel. No one can guide them on their journey of helplessness. They are the by-standers, looking in, hurting, and wanting to help, but they don’t know how. I found this in my husband, and I am always reminding people who experience the journey first hand, like we have, to also remember that the foot-soldiers need nurturing too. They almost have it harder, you know? They want to help but don’t know how. They are trying to help us fight the battle, but they can’t really help us fight the battle. That comes from within us.  That comes from our decisions, our attitude, our gumption and drive to FIGHT. It’s almost innate, the will to survive. No one can appreciate that until they are living it, though they really do try to understand our journey.

Connie’s words are so true and are something that I struggle with daily.  I know that my partner Gary, my family, and others around me want to help, want to be there for me.  Who is there for them?  We can be, friends and family can be, but often they get forgotten and sometimes that isn’t enough. 

I remember a moment a few weeks ago when we were buying a refrigerator and looking at the warranty, there was one very expensive model that had a 25 year guarantee.  Gary said, “We don’t really need a 25 year guarantee.”  And then there were suddenly tears in his eyes.  I could read his mind, the thought that we might not be together in 25 years and that he might have caused me pain by an inadvertent remark referencing mortality.  Another time I was later getting home from an appointment than he expected and I had not turned on my cell phone. He tried calling and didn’t get a response.  He worried and I was oblivious.  Six months ago that would not have been a concern.  Perhaps the strongest memory, however, is of him at my bedside in the hospital holding my hand with tears running down his cheeks.

How do we, the patient, and others provide support?  How do the caregivers, partners, loved ones find the support they need as they deal with the fear, the sadness, and the anxiety of watching someone they are close to go through a process that is so filled with unknowns.  How do we help them cope with not knowing how to make it better?  What is it that they need and how are we to know?

For some it is enough to talk with family and friends, others keep their own counsel.    Still others find that the common bond of a group for family members is what best meets their needs.  The point is that it needs to be talked about, resources need to be explored and the best fit, based on the personality of the individual, needs to be the choice.  Your local oncology unit, physician, social worker, or clergy can guide you to the place that best suits your needs.

To explore this, I called Gary in from the garage to ask him what he needed.  In typical “male fashion,” he said “I don’t need support.”  As he thought about it, he modified this to “Well, when I know what we are facing, then I might know what I’ll need.”  We sat in silence for several moments and then he revealed the thought at the core, “My biggest fear is that I’ll become too dependent on you and then I’ll lose you.”  It was the idea of being alone after being a part of a couple, a partnership.  The fear of being alone stays with the one who is left behind; they face life without a partner.

What this shared insight led to was talking about distancing because of what might be in the future.  We talked, both of us with tears in our eyes, about what our relationship can be and what we want it to be regardless of the time we have left.  The fear of caring too much, of having that person as the center of your life and then facing loss, is so frightening.  His fear is that doing things together will make it that much harder to do them alone in the future.  But, should it mean that you limit the intimacy because there is the potential of it ending or should you explore the depths of the relationship with the belief that it will enrich you regardless of the future?  From the bottom of my heart, I hope this is the later.  I trust that talking about it, that holding each other close, sharing the fears and the rest of this journey will lead to more intimacy and not less.  The greatest hope is that we will have the gift of a long life together, one where we can explore the adventures and the challenges that we are given in order to build a life that we will treasure and will enrich each of us.

Advice:

Most important, we all need support and we need to remind ourselves that it is not just the patient who is in pain.  As my friend Connie (quoted above) says, those close to us rarely ask for what they need because we are the ones who are identified as “needy.”  The person sitting on the sidelines wants to help but doesn’t know how; they too feel helpless and scared, but often need to be seen as the strong one.  The challenge is to determine the individual needs of partners, children, parents, caregivers and friends.  In some cases, the support might be each other, but that is very difficult, it may be your employer’s EAP (Employee Assistance Program), it may be through your faith community, it may be a formal support group or it may be a family member or a good friend.  During different stages of the illness, the needs may change and other resources may need to be explored.  The point is that regardless of whom you see, the needs of the caregiver must not be forgotten or underplayed.  It hurts them too.

You are welcome to take the opportunity to comment on this blog

or leave a private email at jodiekacer@aol.com

Thinking Beyond Ourselves - Volunteerism

As we age, retire or accommodate a diagnosis that will change our lives, one of the things that becomes central is how we spend our time.  Eighteen months ago I worked full time in a job that I loved, I spent about a month per year volunteering abroad, and spent many hours as a volunteer for local nonprofits.  Now that I have cancer and have retired and moved 1000 miles from my former home, I need to look at the changes required to continue to stay active and involved in my new community.  

I do know that staying at home and watching television or reading novels is not going to be good for me either physically or mentally.  It is far too easy for someone who has a chronic and potentially fatal disease to retreat from the world and become centered on themselves and the disease process.  That is not a healthy choice and can easily lead to a downward spiral.  Instead, we need to focus on what we can do for our communities and for ourselves.  A bonus with volunteering is to take our minds off of ourselves and on to others who have needs that we can help them to reach.

My volunteerism for the last decade has been centered on the activities of the Maasai American Organization and involves working with schools and clinics primarily in Kenya, but also in Guatemala.  Once back in the US, we sell crafts made in those countries to support projects in education or healthcare, many Saturdays are spent at local craft fairs selling beaded necklaces.  In addition, I have taught ESL classes, worked with a local agricultural heritage program, and volunteered in healthcare settings and my church.  I get satisfaction from using my gifts to help others learn or find more joy in life.  That is part of what makes me feel like I contribute to society and I know that I get back far more than I give.  This is not totally altruistic; I love the adventure and the social aspects of what I do.  Living with cancer and a shaky immune system made me rethink travel to third world countries where Malaria and other infectious diseases are common and health care is not at the level of quality or availability that we expect here.  I need to find new outlets that fit my new boundaries.

Giving back to the community can enrich the giver as much or more than it does the ones served, there is recognition that we make a difference in the lives of others and that feels good.  When living with cancer it can give us a focus outside of ourselves.  For me, that focus helps keep my own situation in perspective as I work with people who are far less fortunate than I am.  In January I worked with a group of primary school kids in Kenya whose schoolroom had a dirt floor and who used sticks in the dirt because they had no paper.  I  taught them the song “The Wheels on the Bus go Round and Round.”  Hearing them master a new song and seeing the joy on their faces was a delight.   Helping a mother and her young daughter realize a goal of that daughter going to school instead of the usual alternative of marrying at age 13 made me so conscious of how fortunate we are in this country and how much impact a volunteer can have on the life of an individual.    

Now that international travel is on hold, I wonder how I will satisfy my need for adventure and for giving to others in ways that my body will allow.  That challenge is what I’ll be exploring when I return to North Carolina.

  I think we all need to find a way to stretch beyond ourselves and our families, to give in a way that reminds us that we contribute toward making our community and the world a better place.  Knowing that you made an impact, knowing that you add value to someone else’s life can counter so many of the negative thoughts that come from being ill.  We need to find areas of our life that are filled with positive feelings and helping others can be a great way to get there.

Advice:  Look seriously at your interests, what you love, and at your strengths.  That is the first step because you must match the activity you choose to what “turns you on.” Volunteering should be about enjoying the process and doing good work.  Don’t say yes to doing something that will not bring you joy.

 Then explore the needs in your schools, hospitals, churches, museums, libraries and local community activities.  There is a huge need for volunteers in many areas and if you make a few phone calls or talk to friends who teach, work in the helping professions or volunteer.  They will help you  find a match for your skills.  It might be mentoring a young person or building a house, but whatever you choose, it will fill your days with positive energy and serve as a reminder that you are contributing to others.

You are welcome to take the opportunity to comment on this blog

or leave a private email at jodiekacer@aol.com

Coming Home

September 3, 2011

We arrived in my home town of Kewaunee, Wisconsin one week ago at midnight after an eighteen hour road trip.  Kewaunee is a small town on the western shore of Lake Michigan about 30 miles east of Green Bay.  Driving down the hill of the main street in town brought memories flooding in from both my childhood and recent years.  We passed the high school, the home where I grew up, the site where our family business was for four generations, and finally, the driveway of my much loved cottage.  I was home!

The first day was spent with family and dear friends who also have roots in Kewaunee.   Lea is the President of the Maasai American Organization, for which I volunteer and which has provided me with incredible adventures in Kenya and Guatemala along with feelings of accomplishment over the last eight years.  It was wonderful to see them and to experience Lea’s absolute comfort with talking about my cancer diagnosis.  She first asked if I was comfortable talking about it (which I am) and then asked very detailed questions.  I am convinced that the way we become comfortable with this still rather taboo subject is by talking about it.  She asked about my fears, about what things most bothered me, about how I was dealing with this issue on a day to day basis. 

Later in the week, several of my high school friends got together for lunch.  We didn’t talk at the level of intimacy that Lea and I had, but it was not treated like the elephant in the corner, nor did we dwell on the topic.  It was so good to laugh about our high school antics, reminisce about the 45 years since we all lived here and all of the changes that happen in our lives between 18 and 60. 

We’ve stopped in to visit my niece and nephew and their two little ones and got the best hugs ever, stopped at the homes of friends and surprised them, had dinner with neighbors and have had friends stop in.  We went to a local festival where I had the opportunity to greet and hug several people and made plans to see others.  It has been a whirlwind of activity and exactly what I needed (I also needed naps on a couple of those days).

What I’ve learned is that surrounding oneself with old friends and family is the best morale booster there is.  These days have energized me and have shown me how much people care and how important it is to stay in contact with those we love.

Advice:   Social contact is healing and it helps us both come to terms with the diagnosis of cancer and see that the cancer is not the most important thing in our lives.  People are.  Make the effort to see old friends and include them in your life.  Even if your cheeks are puffy and your hair is falling out, they will love you like no one else can.  If that isn’t enough to convince you,  research shows that those with social contacts live longer and have more fulfilling lives than those who close themselves off.

You are welcome to take the opportunity to comment on this blog or leave a private email at jodiekacer@aol.com

Drafting The Will

When faced with a devastating diagnosis, the first thoughts we have may be facing the possibility that life will be cut far shorter than was “the plan.”  To say that I need to make plans for my demise is a stark reminder of this illness and all that it may do to take control of my life.  As I type the words, thinking of the future needs of my grand-niece and nephews, I am reminded that I may not be here to see them grow into adults.  That thought breaks my heart.  It also reminds me that I need to make sure that my will is in order and that other practical issues are taken care of even if I do not intend to leave this world for a long time.  Those practical issues have emotional responses that can sometimes leave me reeling. 

So, often I write through tears.  I want to be here to re-evaluate this will in a decade or so, to make decisions based on these kids being adults.  I want to grow old with the man that I love and figure out how that next stage of life will unfold.   I want to take vacations and buy airplane tickets.  I want to spend time at my cottage on the shores of Lake Michigan, watch the sunrise, spend time with friends and family. 

But, I need to write a will.  A will reminds us of our mortality, there is no doubt that it is a sobering experience.  Writing that will when we have a potentially fatal disease magnifies all of the fears around that mortality.  What I remind myself to do is to balance the negative thoughts that creep into my psyche with positive messages, with visualizations of my healthy body and with optimism.  We all need to address the possibility that we may die sooner than we planned.  We need to make sure that what we want for the future is put in place, but we also need to make sure that there is balance, that we don’t get caught in a downward spiral.  To balance, we need those positive messages, some deep centering breaths and a reminder that we must put our focus on the outcome we desire.  Optimism is powerful in terms of helping us stay healthy emotionally and physically.  We can find hundreds of studies that indicate the power of the attitude to impact both longevity and the quality of our lives.

My other comment here is about the interaction with the lawyer who drew up the will.  I chose someone I’ve known of for decades, but didn’t know well.  What impressed me, as it has with other professionals I’ve dealt with, was his compassion and willingness to meet my needs.  As we struggle with the steps of coping with disease, it is a comfort to be treated with care and gentleness by those we choose to support us along the way. 

Advice:  First, no matter where you are in life, if you have assets, make a will.  Call a lawyer today and make the appointment.  Also, make a list of those items that would not go into the will, but that you love.  Both describe them (Aunt Minnie’s silver bowl, received as a wedding gift in 1899) and direct where you would like them to go.  Your family may have no idea what the history is of some of your most treasured heirlooms and this will be a gift to them.

Should you be in the position where you are told that your days are numbered, talk about the will with your family and review it with your attorney.  Talk to trusted resources to help you explore your options. Depending on your wishes and individual circumstances, think beyond family for your legacy. If you choose to make a gift to your community or a national charity, make sure that your directions are clear and that someone who shares your feelings will be carrying out your wishes.

But DO IT while you have the time and the energy to give thought to your plan.

Avoid the Negative Influences

July 12, 2011

Negativity and Know-it-Alls can make our lives miserable if we let them.  Don’t.   I suggested avoidance of those who might be negative in their focus, but, this goes beyond that level of relationship to the people who have at one end of the spectrum the stories with the theme of Old Aunt Tilly suffering for months and then going through the agonizing death throes.  The other end, and more benign is the person who says with an eye roll, “Well, they may have told you that your hair won’t fall out, but it will, just you wait til one morning your pillow case is covered with hair and you look like a billiard ball.”  This is just not helpful and it beats me why anyone would feel that it is either helpful or supportive to scare the pants off someone ill with cancer. 

In these cases we have to take control and do a bit of teaching.  For whatever reason, there seems to be some empathy block or other reason that people feel a need to go down a path that the person with cancer is not interested in traveling, and they may not have the sensitivity to pick it up even with very clear cues. 

Just the other day I got that hair message, almost with a sneer, “Oh, its going to fall out alright, it always does.”  I started with the research that says, “Expect a bit of thinning that only you will probably notice” from the website of the drug.  She was not impressed, so I switched gears, held up my hand (traffic cop style, “STOP”) and said, “You know, we seem to differ on this and my goal is to stay positive about it.   I’d appreciate it if you would look with me on the bright side and expect the best.”  That worked.   She smiled, caught herself I think, and the rest of the conversation went well. 

Another situation involved a woman who was clearly going down a path of intimacy in her questions that I didn’t feel that our relationship supported. Her questions were very probing and financial in nature and I just plain didn’t want to go there.  So, I said “That is just something I’m not comfortable discussing.”   She asked the same question in another way, my response, “I’m not comfortable going there” and again, I put up my hand and said “Stop, that is not a conversation we are going to have.”  She stopped.  We do not have to engage in those conversations and YOU need to be the one to control them. 

People are not comfortable with the language of cancer; they feel awkward and wonder what to talk about.  We can help them during these teachable moments to learn that there are ways which support and ways that don’t. 

Advice: As kids we were taught to answer questions because it was not polite if you didn’t.  Change that rule in your head.  If someone asks an intrusive question or is rude we have no obligation but to be polite in our refusal.  Then we can move on to another subject or end the conversation.  Set clear boundaries, say “STOP,” play the broken record if you have to.  You are in charge of what you share and with whom you interact.  Do not forget that.

The Initial Shock- Cancer

June 7, 2011 started like any other Tuesday. I was on my way to assist with an ESL (English as a Second Language) class at the Davidson, North Carolina YMCA, a volunteer activity that has been near and dear to my heart since I started with the program this winter.  I woke up with a headache, but since those have been in my life since my teens, it seemed inconsequential, life goes on.  When I got to class, things started changing, visual disturbance was easily put off as a migraine aura.  That was the start of an experience that has changed my life forever, and the story I want to share on these pages.  A story of shock, a story of fear, and finally a story of hope and gratitude.

I’m a healthy retired woman, 61 years old. My forty year career was in Health Care and I believe that we need to be responsible for making good choices for our health.  All of my life I’ve watched what I ate, exercised, lived life with the goal of living to at least 93 like my mother did.  I have never smoked. Health has been a basic expectation and I’ve lived like it is important to me.  So, what happened?

I was fortunate to have support immediately and the Coordinator of the ESL and dear friend drove me to the local Emergency Room after calling my partner with the request to meet us there.  I don’t know of a time that I’ve ever been so fortunate to have support.  By the time we arrived I was disoriented, confused and struggling to talk.  My last memory is handing my insurance card to the admitting clerk and asking if their neurologist was Board Certified.  I thought I was having a stroke. 

The next thing I knew I woke up in the ICU at Presbyterian Hospital in Charlotte with my hand held by the man that I’ve come to love and appreciate more every day, my partner of two years, my friend, my lover, Gary.  Also in my room was the physician whose task it was to tell me that the MRI and CT scan indicated that I had Stage 4 Lung cancer with a 6 cm primary tumor, two lesions on the occipital lobe of my brain one cm on the left and two cm on the right and others noted in my liver, my bones and my lymph nodes.  Had this not been found and treated, he said, the brain lesions would end my life within 3 months.  But I was fine that morning and the sun was still up.  How could this be?

To say I was frightened doesn’t describe the terror that Gary and I both felt.  For the next 5 days there were tests that included what felt like every scan known to modern medicine, the bronchoscope that retrieved the tissue sample for the biopsies to confirm the type of tumor, blood work that was drawn what felt like every hour.  The building of a “halo” to serve as a head holding device while they zapped the brain lesions with stereotactic radiation designed to burn out the tumors.  I was experiencing the most advanced medicine that could only have been imagined in my days of clinical training in the 1970s, it felt like a miracle.  

In addition to the medical side of this initial stage of discovery of this turn my life had taken, we had to tell family and friends the news.  This was perhaps the hardest part, since I was always the one who took care of other people, letting them know that I was going to be needing them was not something that came easily for me.  And, hardest of all was that my family and friends are almost all in Wisconsin, my home before moving to North Carolina to be with my man just over a year ago. My largest support system was 1,000 miles away and Gary was going to need to be my rock.  Lucky for me, he tells me at every opportunity that he is “a good catch” and this experience has shown me just what that means.  He made the calls to family, to dearest friends and reported back to the bedside.  July 11

Side Effects are the given in Cancer Treatment.  These are powerful and often toxic drugs and to think we can avoid some nastiness is naïve.  The unknown is that each “chemo cocktail” is different and each patient responds in their own way.  The plus here is that treatment dose levels, targeted therapies, and more understanding of methods of administration have made the receipt of chemo much less onerous than it was even a short number of years ago.  For example, in my case, new nausea medications are administered in the IV starting before the chemo is attached and I did not experience a moment’s nausea during or after my first chemo treatment.  My first week after chemo was almost side-effect free, but I was not totally spared.  I lost my taste for wine and coffee.  Nothing else.  And I liked wine and coffee as part of a ritual to rev up in the morning and wind down on a weekend evening.  Now I drink water.

After about a week, other side-effects developed.  It was a 2 fold surprise that seemed to suck the water from my GI tract and deposit it in my cheeks.  So, now I looked a bit like Alvin the singing Chipmunk and had everything from dry lips to constipation to the dreaded hemorrhoids.   So for this one, drink lots of water, eat whole grains and fruit, and if that doesn’t do it, the gentle stool softener Senekote did the trick to get things going, . Try to catch these things early and call your nurse just to make sure that the solution is compatible with whatever meds you are taking.  This is what worked for me and I want you to know there is relief out there.  You do not have to suffer in silence, but even OTC solutions should be checked out.

Advice:  Ask questions, keep a list and write them down whenever you think of one.  Some might mean a call to your nurse or your physician. It is your right to have your questions answered and your responsibility to ask them.  Your comfort and perhaps even the efficacy of your treatment may rest on your full understanding of your treatment.  It is also your responsibility to read the information that is given you and follow directions to the “T.”  That will be the biggest predictor of successful treatment and it is why I advocate for good notes and taking someone with you to every appointment, so you can have another person there to hear and document what is said.

Ask the questions and expect the answers.  Tell people what you need and want.  This is not the time to by shy, it is your life.

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