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Thinking about future

Forums General Melanoma Community Thinking about future

  • Post
    Daisy2018
    Participant
      Hello my fellow melanoma fighters and families.
      I was thinking lately about future. One of the pressing things on my list is my car. My 16 years old Toyota Sienna is getting too old to the point of being unsafe. I m becoming a regular at the car shop every week for a last month throwing more and more in it. Reading car reviews. People are praising cars for looking forward driving them for next 10 years.
      I ask myself. Do I have another 10 years? Would I be able to work? Should I just get some reliable little car I would be able to drive to my treatments? Should I get the car I always dreamed of since I may not get to my retirement age where people get the car they always wanted. I have some retirement money saved up for a rainy day. Is it a day to use it? At least I can enjoy my ride to the cancer treatment place.
      There are so many uncertainties. I am a planner. I have no control over what is going to happen no matter how much will power I will put in it. I m stage 3c now. Still recovering from lymph nodes removal and it’s slow and doesn’t look like I can have the drain out after a whole month of having it in. The incision looks weird everyday. In the morning it looks good. In the evening it looks all red. Seeing surgeon in 2 days.
      I m greatfull to be able to work from my couch and had I had to work on my feet or even from the office I would have had to take FMLA last month. Looking forward of getting Keytruda for next year. How would it work out, side effects? Getting anxious and uncertain.
      I always thought I can take care of myself no matter what as long as I m healthy. It looks I have to live day by day. I wish a had crystal ball to know what is the plan.
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    • Replies
        ThinkingPositive
        Participant
          Hi Daisy,
          I certainly understand being a planner! Thats important, whether it is buying our next car or developing a treatment plan with our surgeon and oncologist. Given that you are dealing with the yucky drain issue, I can see why that’s causing anxiety. For me, after the plans are laid out, and healing has begun, I try to stay in the moment. I feel no anxiety in the NOW, and that helps calm me, even during surgical healing. I can see there is still much life and spunk in you, so keep looking for your ideal car and let us know what you choose!
          Cindy
          Johnjk04
          Participant
            Daisy, Daisy – don’t ever let melanoma take control of your body and mind. There are so many people on this forum, they fought as stage IV patients and are now cancer free. Little over eight years ago, I had melanoma in the brain, spinal cord and almost every organ. After surgeries, radiation and immunotherapy, I have been cancer free for eight years now. One more set of scans and my oncologist will be cutting me loose. Daisy, you got this, live your life. Once your Keytruda treatment starts, I believe that you will succeed in a big way.
              mrbill16323
              Participant
                Thank you. It means so much that newer patients hear the success stories!. Very encouraging! God bless you.
              mrbill16323
              Participant
                Daisy you do what is right for you. You own your life and your finances. But since you’re asking for advice, here’s mine. Financial pressures can ebb and flow, right? But financial freedom takes a ton of stress away from one’s life. I don’t know your financial situation but I would not use my retirement funds to make an extravagant purchase. I’d rather get a basic set of wheels to get me around to my appointments and what’s needed in my life – something you like but truly reliable. Something very affordable. Perhaps even a lease situation – there are great deals out there. If you get to a point where you have a great urge to hit the road, rent a fun car for a weekend and do some road trips. Explore in a safe way (COVID you know). Not saying you can’t splurge on some things, but remember goals. Live this life now and remove as much unhealthy stress from it that you can. Wishing the best for you.
                Bubbles
                Participant
                  Looking forward is difficult for everyone. But, it takes on a whole new complexion when you are carrying a potentially lethal diagnosis. I was diagnosed with Stage 3b melanoma in 2003. My children were 10 and 12. Obviously, no effective treatments were available. Against the advice of many, I opted to finish the Pediatric NP program I was in. It required a three hour commute (1 way) 2-3 times a week and necessitated my taking an incomplete in the semester I was in the middle of when I had a complete lymph node dissection (we didn’t know any better then) and the required WLE. In order to continue, I was forced to complete that course work along with required new courses the following semester. It was hard. I have not regretted it once.

                  Jumping forward ~ in September of 2010 I had just healed from having my head zapped for brain mets and the upper lobe of my right lung removed due to Stage IV melanoma metastasis. NONE of the current targeted or immunotherapies were FDA approved. I could not find a trial that would take me, because thanks to those procedures I was NED. Further, no trials allowed entry to someone who had just had a brain met. Facing all that – I wrote this:

                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/09/looking-forward.html – which reads ~

                  “Looking forward…
                  …for someone who always loved planning the trip and looking forward to the wonders the upcoming phase of life might hold, almost as much as the trip itself….it is odd to find that looking forward has become uncomfortable.

                  As I try to explain, I must start with looking back. And I find comfort in the fact that I am truly able to say, ‘I have no regrets.’ That doesn’t mean that I have done everything that I wanted to do. Nor have I done all things perfectly, but I am assured that whatever I have committed myself to, I gave it my all, with energy, enthusiasm, and hard work. Of this I am glad. I am proud that a little girl from Alabama with big dreams has been able to see so much of the world, attained a masters in nursing, took care of children in a way that she always wanted to, and created a family of her own. I am so grateful to whatever force that drove me, the professors at UAB who aided me, and my family who supported me through my last 2 semesters rolled into one that allowed me to finish my PNP degree at a time when I was not at all sure what would happen next. My ability to do my work has been a great joy for me and hopefully some small help to the children and families who allow me to be a part of their lives. I am beyond grateful for Brent and Fred and Rose. How I was so lucky to share my life with such wonderful, funny, kind, brilliant, and caring people I will never know. I am not ready to leave, but when I must, I am forever grateful that I got to see Rosie hitting her stride at Georgia Tech, having no doubts that the world will be forever changed in the best possible way by her busy, creative spirit. I have seen Fred, my little chubby, spitty, dumpling of a baby grow into a wonderful man. A person to whom others look for help, for fun, for a steady caring hand. I am certain he will find his place and lead others with his innate gentleness, humor, and grace. I am blessed to have been witness to the creation of two incredible adults.

                  I am content to have made it this far. So many, do not “come within sight of the castle of their dreams.” I know. I beat the odds to have made it this far, and to have had such a beautiful ride along the way is a fortune beyond measure. Yet, I am greedy still. I would like to see graduations, and small joys, and even be there when disappointments come…as they always will. But, I don’t know what will happen. And while that is true for all of us, I guess I do feel there is more room to question here. A few years ago, I would think about the kids being gone, and how much I was bound to miss them, but how neat it would be to have time with Brent and all the things we would be able to do together. But now that it is here…I have a hard time allowing myself to dream, to plan the trip. It is hard to buy a pair of pants…who do I know who could use a size 4 tall?! I can’t stand the thought of wasting them!!! It is hard to arrange to have your teeth cleaned. I mean, that could be a waste of time and money, if you end up dealing with other things….and you spend so much time at doctor’s offices anyway. On the other hand, getting things done for others seems very pressing. I want to be sure that certain things are accomplished, acquired, set up….in case I am not able to do it later. I guess this sounds rather strange. But it is my world these days.

                  Yet, Brent perseveres despite my protestations, as he has always done. Though we had known each other for over 4 years, we did not go on our first date until June 14. (Shockingly enough, we went running together! I wonder how many miles we have run together since!) Shortly after, he invited me to go to the Pediatric Intensive Care conference that was being held in October in San Fransisco with him. I politely declined, thinking that there was NO WAY I was flying across the country with this weird little man in couple of months!!!! We were married on August 26, that same summer. Toward the end of September, he brought me an envelope. Within were 2 tickets to San Francisco. Incredulously, I asked when he had acquired them. “When I asked you,” he replied. (Not really sure, even today, how I feel about being a foregone conclusion!!! Crazy man!!!) I obviously went and had a glorious time. Now, 22 years later, he’s done it again. We are going to the Pediatric Conference in San Francisco in October. (This time I agreed to go from the start.) Each day is a little bitter sweet. And I am trying. I have told my kids their entire lives…”Live each day as though there will be no other, and you will have no regrets.” I am not entirely pleased with my every move on every day…but that has been my guiding mantra. And so it will have to be, even more so now. I did get the pants…for San Francisco. I’ll call the dentist tomorrow.”

                  Back home from our trip, in October of that year – I developed another met on my tonsil. We actually considered leaving it so I could have “measureable disease” and possibly gain entry into a clinical trial. However, given that would obstruct food and airflow, I had it surgically removed. Finally, in December of 2010, my husband found a phase 1 trial in Florida at Moffitt Cancer Center for a weird drug – MDX1106. I live in TN. Despite the risk, the travel and the expense – I took a chance. I took that drug, along with 30 other ratties, for 2 1/2 years. My last dose was in June of 2013. I remain NED for melanoma with no further treatment. That drug turned out to be Nivolumab (Opdivo).

                  I cannot know what is best for you. I certainly cannot advise you regarding things that affect your finances significantly. But, as a melanoma patient – SEVENTEEN YEARS LATER!!!!!!!!! – I can say – LIVE!!!!! I’m glad I chose to finish my degree. I’m glad I bought the pants.

                  I wish you my best. celeste

                    Daisy2018
                    Participant
                      Hey guys. I keep reading what you just said. It’s so wonderful you guys spent your time to write all this. It’s really really helpful. There is lots of darkness around in my personal life now, choices and decisions we make. I appreciate you a lot. Bear hugs to all of you!
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