Yesterday, May 16, 2014, was a personal milestone for me. You see on May 16, 2012 I had my cancer surgery and found out I have stage 4 cancer. So, on the one year mark I told everyone that perhaps I should celebrate that date even more than my birthday. That must sound funny, but I have a very poor prognosis with my cancer, so to me every year that I am here on May 16th feels like a gift. Everyone seemed to think that was a great idea. Well, yesterday I celebrated another year. It’s a day for mixed feelings-happy for another year, but the other side is the reality of my situation. But I celebrated my milestone alone, no one remembered. I know people are busy with their own lives, but this is a huge part of my life. I guess it shouldn’t be a surprise as just about everyone forgot my birthday last year. You might think I sound like a whining spoiled child, but I live with the knowledge that time is no longer my friend and that every day truly is a gift. With that I am making the effort to celebrate everything with my son, so it would be wonderful for my friends to share in our celebrations. But no matter what anyone else does or doesn’t do I will continue to celebrate any and all milestones and appreciate the gift of each day.
Category: Cancer
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.
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.
A Night Out at a Bar-With Music
I have been pushing myself for a long time now to expand my comfort zone. When my mother died in 2010 I pushed to be as independent as possible and take care of what my son and I needed. With a lot of work and determination I accomplished that goal, but as always I hope to do more. Well, then in May of 2012 I was diagnosed with stage 4 cancer…that has certainly changed things. It has pushed me even harder, not only to do more, but also to live more. It is amazing how important things can become when you find out you have less time to do them. I have pushed myself so far from my comfort zone that even I am shocked!! As I keep telling everyone ‘life is short’!!
So in that mindset I had the opportunity to go to a local bar called Gallagher’s and hear my friend’s band play. It was an amazing night; I have not been in a bar for about 23 or 24 years. The best part was the band, Jack N Peg (photo below), their performance and music were great!! I loved it, as did the rest of the crowd. The very talented members of the band are Buddy Nuggetts, Mind Blower Pete, Cool Breeze K and Midnight Swami. It was fun to be in the crowd, sitting on a barstool, drink part of a beer and enjoying one of my favorite things-live music. And best of all there was no anxiety or panic-just fun!!
It was a great night-one I hope to repeat soon!!!!