Category: Reality

Changes

As everyone knows, but might not like, the fact is that life seems to constantly be changing.  People come and go, they die, babies are born, jobs change, there are promotions, then there are marriages, divorces, even change of mind and so much more.  I know when my panic/anxiety and agoraphobia where at their worst change was something I did not deal well with.  To try to deal with changes I would just visit my old friend denial again and make believe that things were just the same-that worked for me….or maybe not.  I fooled myself for as long as possible, I found that creating my own little world inside my house made it a little easier to cope.  That doesn’t mean I wasn’t confronted with changes, I was, but I put them into my own context.  When that didn’t work I just buried whatever changes there were, hoping never to see them again.  But then therapy came along and suddenly my previously denied and buried changes were on public display.  

I find that I have become better about handling change, at least most of the time.  But there are some times when it seems like there are more changes than I can deal with.  I feel like I have been knee deep in way too many changes lately and I am overwhelmed.   I have someone I am very close with that lives a distance away and is now moving further away.  I have had some deaths, changes in my life style, health changes, changes in the way I access medical care, changes with my son, and I am sure there are more that I am forgetting.  I think it would help if I had some sort of chart to keep it all straight.  I have decisions to make that could lead to more changes in our life.   I am trying hard to use the tools I have learned in therapy to keep it all in perspective, you’ll notice I said trying.

 

 

Is It Me or Is Time Standing Still?

I used to be a very patient person, I could actually drive my Mom crazy just by being patient-she was not in any way a patient person.  Over the years I became a little less patient and now…..well now I am beyond impatient.  Lately I feel like I am even becoming intolerant-not a trait I am happy about.  I think that life has a way of chipping away at you until it finally exposes the nerve.

I am spending this weekend waiting…..that would be difficult enough, but I am waiting for information that could greatly impact my life.  So far I have tried hard to not be anxious, I’ve trying not to think about it and I have even tried letting it go.  I have had only minimal success….all this frustration is just adding to my stress, the same stress I am suppose to be avoiding.  

So, now how will I deal with this?  I still have to wait until sometime Tuesday and that seems so far off right now.  I think I have to try to remember that I can’t change what will happen…doesn’t that sound easy?  In reality I am getting some things done and trying to rest so I will be ready to deal with what comes next.  But in the meantime it certainly feels like time is standing still…….

 

Down the Rabbit Hole-Accessing Medical Care Part 2

I was so hopeful that my health care situation was going to become clearer-but no.  I have now met with someone at clinic about the available plans and the costs-scary stuff!!  As I feared the costs are impossible for me, but clinic doesn’t see it that way.  After they expressed some serious issues with my budget I spent three days cutting, canceling services, subscriptions and I was able to cut enough so that it actually covers my costs-no more bill roulette.  But still there is not enough for all the costs of a health plan.  I could just barely pay the premium and that would leave about $30 a month toward the co-pays and deductibles.  So I met again with someone at clinic and was enrolled in the only plan they are accepting.  I have no idea what I am going to do, I feel like I am in a topsy-turvy maze that has no exit.  I am running and running as fast as I can and fighting as hard as I can–but getting no where.  I keep ending up at the same place–what am I going to do?  I don’t know.  I mean what is the advantage of having a health plan if you can’t afford to use it?

The stress of all this is taking a huge toll on me-I am short of breath all the time, dizzy a lot of the time, crying often, not sleeping much and, if possible, even more tired.  I can’t take much more, my body is already compromised by my cancer and treatment.  But if I don’t fight who will?  I am not even sure exactly what I am fight for or against who or what winning would be.  I keep trying to gather enough information to understand it all, but so far that hasn’t found any answers.  So I continue to run the maze with no exit, perhaps I should have brought some hedge cutters to this fight.  My biggest hope at this point is to figure out what to do, sooner rather than later and before my body gives out on me.

Reality: It’s Like a Kick to the Head

I often use that expression, it seems to me to be a good description of how life can feel.  With that in mind, earlier this week I toured a facility for future placement for my son, Robby.  I have fought most of his life to not place him, but with my cancer I have to make sure all the plans for him are in place.  It was a very nice facility, it was clean, the nursing staff was friendly, they have a great retention rate with the staff, there are other younger patience like my son, lots of activities for all levels of function and they can provide the personal assistance he requires.  All this was great to find, but there is one problem-I now have the visual image of Robby being in a facility and I am not dealing well with that.  I know placement is not only the right option, but it is the only option and that finding the right place is very important to me and Robby.  I realize there is no place that will be like home or provide the same kind of care he has received at home.  So now I am waiting to here back from them about whether they can take his custom bed, it not only keeps him safe, but also gives him a piece of home to take with him.

I still have a couple more places to tour and then I will be so glad to have this done and just spend time with Robby.  It will be great to put this project away, if only I could put away that image I have dreaded all these years and the anxiety/panic response that has followed seeing him in a facility.  The most important thing is to find the right place that will provide for his needs.  After that maybe the anxiety/panic will subside-although it will certainly be replaced with the next stressful thing……

Through the Looking Glass-Accessing Medical Care

After 28 years of accessing the healthcare system for my disabled son I was sure that I had seen it all.  But almost two years ago when I was told I had cancer I was amazed at what came next.  I do not have medical insurance, I had always just paid my own medical costs.  Two hospitals turned me away because I could not pay in full upfront for my surgery.  I called a third hospital dreading their response, but they told me that they would work with me-I was beyond shocked.  I then got a referral from my obgyn to a oncologist that worked at that hospital, she is amazing.  Her office referred me to clinic that could help me with my healthcare and the cost of my surgery.  The clinic did help me, they made arrangements to cover the cost of my surgery and the treatment that followed.  I have been a patient of the clinic ever since, where I pay on a sliding scale for my primary care.

Everything was fine until the beginning of this year with the new healthcare system.  I am getting a lot of pressure from clinic the take a healthcare plan that I can’t afford, I live on a very limited income.  All this was stressful enough, but now stress has met it’s friend anxiety after finding out that if I do not take a healthplan I may not be able to stay at clinic.  I have no idea what I will do if that happens. 

As of now I have done 18 cycles of palliative chemo, but I am sure this type of chemo will not be covered by any of these healthcare plans, as my chemo is buying me time-cure is not an option.  These healthcare plans are outcome based, which is problematic as my prognosis is poor.  I feel like if I am forced to take a healthcare plan it is like forcing me to decide I am willing to give up future chemo and therefore shortening the time I could have with my son-I am not ready to make that choice.  After 2 weeks of all this stress and 2 more weeks until I meet with someone at clinic to look at the healthplans my anxiety has reached a point where I feel like I can’t take a deep breath-I hate this feeling.

I thought trying to access what my son has needed all these years was like a trip to Alice’s Wonderland, but now with my situation I feel like I am peering through the looking glass and what I see is frightening.

Thoughts of Christmas-Past and Present

Each year as the holidays grow closer I find myself remembering Christmas’ past, especially the ones when I was a little girl before my Grandfather died (he died when I was seven).  There was something so special about those Christmas’, it was a feeling in the air.  It had nothing to do with presents, it felt warm, loving and even magical.  The holidays were filled with lights, family, friends, baking, cooking, entertaining and going to see Santa.  After Grandpa died those feelings of Christmas were gone, they were replaced with memories of family tension, disagreements and even anger.  This was not Christmas as I knew it and I have tried year after year to get it back, but so far I have not be successful.  

This year we had the priviledge of spending Christmas Eve with our adopted family.  Every year they have a very large open house with family and friends; it is quite a gathering.  I dressed Robby in his Santa pants and hat then Kevin, Robby and I were off.  It was amazing seeing everyone, meeting some family members I had not yet met, sharing wonderful food and conversation and seeing the kids run, play and laugh; it felt like Christmas.  Robby made friends with Grammy, who shared cookies and other treats with him.  He also watched the kids running and playing, Jo’s three year old grandson Jude had fun throwing a foam airplane at Robby and Robby didn’t seem to mind.  Seeing the excitement and joy in the faces of the children took me back to the Christmas’ with my Grandpa.  It made me think that perhaps the feeling I have been searching for is really about simple joy and love and sharing both with the people I love.

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It’s Time to Face the Reality of Cancer……Again

Living with cancer changes your perspective, things that seemed important before cancer may no longer be important.  Many things that most people take for granted have a new importance.  Time is one of those things….most people seem to go along taking time for granted-like there is a never end supply of time.  But when you have cancer, especially stage 4 cancer, you realize quickly what a precious commodity time can be.  I am trying hard to have more time with my son Robby.  To that end I have done chemo-18 cycles of chemo so far-with no regrets. 

Well, I have had a short break in my chemo, something that my body is grateful for.  But now it is time for another cancer marker blood test and exam with my oncologists-the outcome could send me back to chemo.  I am willing to return to chemo in exchange for more time with my son.  Don’t get me wrong, I certainly don’t want to give the impression that chemo is fun, it is not.  But to have the gift of more time with my son I will do as much chemo as I can.  I know there will come a time that I cannot do anymore chemo, or as I call it, the quantity vs. quality decision-but I am not there yet.

The results of my current cancer marker test and exam have extended my short break from chemo, unless something changes.  I am pleased to have at least a little more time for my body to recover from chemo.  But that being said I also feel like I am back waiting  for the other shoe to drop.  The feeling of impending doom does not help my anxiety.  The two things I need to remember right now are: my oncologist made it clear in the beginning that recurrence for me is not if, but when and for today-no chemo.  In a short time we will go through this again, except this time we will add scans-but that’s for another day…..

Being Thankful

I have always thought that being thankful was something that should not be limited to just one day a year, but that one day does give the opportunity to slow down and reflect.  Thanksgiving is a time for people who love and care about each other (family and friends alike) to come together to celebrate and that is certainly something to be thankful for. 

My cancer has reinforced my belief that you should not leave things unsaid, if you do then the opportunity may be lost and you will just be left with regret.  So I want to take a moment to share at least some of what I am thankful for.

I am thankful that my son Robby and I will be spending Thanksgiving with a wonderful family.  Last year we were invited by Angela, one of Robby’s nurses, to spend the holiday with her family, it was a wonderful experience for us.  So to get the chance to spend the holiday with them again this year is truly a blessing. 

Speaking of nurses, I am so thankful to both Angela and Kevin for the amazing care they give Robby.  They have come to be like family to us,  it’s hard to believe it’s only been just over a year and a half since they started here.  I don’t know what we would do with out them and I don’t want to find out.  In addition to caring for Robby they have also provided a variety of much needed support to me.  I’m not sure that I can ever thank them enough for all they do and for being who they are.

Another fresh perspective that cancer brings is the appreciation for even the small things and special moments in life.  Which brings me to Robby, I could not be more thankful for the time I share with him.  I am grateful for his smiles (that can melt your heart) and his attitude (good and bad); they make him who he is.  And early mornings when he and I have our time together, just us.

I am more than thankful for my ‘adopted family’-Robby and I are so lucky to have been welcomed into their family.  They are always there for us and I try to always be there for them.  We have been through much together-good and bad-which seems to make us even closer.  Robby and I didn’t really have any family until we were ‘adopted’ by Jo, Curtiss, Brandon, Dan and yes even Grammy. 

Speaking of family, I am thankful and blessed for continuing to reconnect with Patrick.  It has made it possible for my son Robby to connect with family, something that has been missing in his life.  We are also blessed with the opportunity to get to know Patrick’s partner David.  And then there is the gift of getting to appreciate and enjoy Patrick’s art again; he is truly an amazing and talented artist.

I want to thank Dr Eppler, I have been working with him for approximately 10 years now.  He has helped and supported me more than I can say, like helping me get on the right path to move in a positive direction to get my life back.  He has also been the one encouraging me to write my book and even to launch this blog.  For all he does thank you feels like it’s not enough, but that said-thank you.

I am thankful for all the new friends I have made and the things I was able to experience this year-many of which would have been impossible to do before.  I am sure that I am forgetting some things, but it feels like I have started another book here.  So I will leave with this thought….never miss the opportunity to say thank you.

 

Update-Dealing With Death

I attended the funeral for my cousin Andy and I was right it was a wonderful celebration of his life.  As I had mentioned I would be see family I have not seen for many, many years and by the time I arrived at the church I was getting a little anxious about seeing everyone.  But it was an amazing experience, I felt very welcome.  We shared memories, photos-both old and new, stories-old and new, exchanged phone numbers and email addresses and agreed to stay in contact.  I hope we do.

I have been to more funerals than I can count in my life, and missed several during the years that we didn’t go and the years that I could not go.  With all those funerals I thought I had seen and felt everything until this time.  It was different sitting there knowing that I have stage 4 cancer and sooner, rather than later, I will be the one who’s gone.  It wasn’t a sad feeling, it was a feeling of…..well I guess you could say reality.  It wasn’t scary, just a realization, but in a different way….it is really hard to find the words to explain it.  The one thing that is once again clear to me is the importance of living life in the moment….time is something not to be taken for granted.

Dealing with Death-An Ongoing Issue For Me

Today I am going to the funeral of my cousin Andy.  He died in a bodysurfing accident at the age of 54-way too young.  The loss of Andy will be felt by so many people-friends and family alike.  For a lucky group of people Andy’s death will change their lives forever, you see Andy was an organ donor.  That is truly an amazing and life changing gift.

For me Andy’s death has brought back lots of memories and presents me with the opportunity to face some of my issues, first the obvious one-death.  I have spent a lot of time and effort in therapy trying to find better, healthier ways to deal with death-not easy.  I have lost so many people I love, including my husband.  Because of that I had gotten to place where death would just cause me to shut down.  When my husband died I buried my grief in an effort to survive and function, this was a mistake.  Not dealing with his death contributed to my panic and anxiety, then my eventual agoraphobia.  I tell everyone I know that the most  important thing is to grieve and deal with it at the time or you will end up in therapy writing your life story and that sucks.

Second, I will be attending a funeral, something that I have not done since my husband died nearly 23 years ago.  And by going I will be pushing my comfort zone once again and I will be seeing family I have not seen in many, many years.  I don’t feel anxious (at least not yet) but I do feel a little nervous, I am not going to let that stop me from going.  And the funeral is being held at the church where my husband I got married-yes, another issue.

I know it sounds funny to say this, but I am looking forward to attending the funeral.  Separate from any issues I have, it is the opportunity to honor the life of a wonderful person who touched so many lives, including my own and will be greatly missed-that’s the reason I am so determined to go.