A New Year - almost....

An End Of Year / Holiday Update - 12/31/15 What a year it has been. I am grateful to be able to see this year out still alive, being ambulatory and being of relatively sound mental status. My New Year’s “resolutions” for 2016 are to: *Be here at this time next year and to be at least as healthy as I am now. *To still be in remission from the cancer they cut out and radiate. *To not have any more problems with the thyroid cancer. *To be Hep C free. *To have, at most, minimal physical “issues”. *To be securely living in my current home. *To maintain and deepen the friendships with those who have and will be sharing my journey. *To continue to be able to give back to others the gifts of time, experience, strength and hope which have, and are, being so freely shared with me. *And lastly, to do those things which will make the list above a reality. It has been good to be reminded of the importance of having other human beings be an active part of your life. I have been able to spend some good quality time with an old friend and his family this past few days. I was reminded of how important it is for me to be an active participant in life. Living an “active life” this past few days has served to distract me from my day to day “routine” and the ongoing physical issues I must deal with. It sounds so simple but it has taken me some moments to be reminded of this. My doctor/nurse/lab appointments continue. Life … continues. I am grateful for every moment. I will even be grateful as I have my colonoscopy. Once again … in closing, the reality of my financial situation continues to be what it is…. not good. I am asking all to give what you can and to remember that no amount is to small. Every little bit helps. I am living month to month, and without the support I have received I would not still be living in my home. A big “THANK YOU” to all who have shared their experience, strength, hope, time and resources over this past year. I don’t remember about 2 and 1/2 months of it but folks have told me I was there and I was a lotta fun to be around. ***Please note that the 12/3/15 post in my blog is one which I encourage you to share freely.*** Please read and share my story. www.gofundme.com/j55wek And read my blog at: riksjourney.blogspot.com

Special Christmas Update - 12/23/15

This is a special Christmas update. I am so thankful to be here and I need to share something I wrote many years ago. It is that time of year and coincides with the anniversary of my cancer surgery. My feelings are beginning to catch up with me. To know something intellectually and be able to talk about it “objectively” is something I have been able to do over the past months. What is beginning to happen is I am now feeling about what's occurred over this past year and a half in a much more profound way. The layers of the onion are falling away. My understanding regarding my survival of this disease, the losses I am enduring as a result of this disease and the support I have received is reaching new depths. I am shedding a lot of tears and characterize myself as a grateful mess. More is being revealed. So on this note I share the following… This is the time of remembrance, of quiet reflection. Remembering all which the Creator has given and revealed. Remembering that I am the result of my ancestors endeavors, faiths, hopes and dreams. To remember my strength is unlimited when I acknowledge my connection to all my relations. To remember the ground I walk on is sacred ground for it is the dust and blood of my ancestors. To remember all of my relations and my connectedness to all things. I am a part of the circle of life. This is a time to reaffirm my faith and to give thanks as I continue my journey on this sacred path laid before me. This is also a time of new beginnings, a time of renewal of the spirit. A time to give thanks to all who have shared my path this past year. I encourage you all to listen to and follow your heart. Expect guidance to come in many forms. It is my prayer that all of your hopes and dreams come true and to, once again, say thank you for sharing my journey and for the gifts you have bestowed unto me. May the Creator grant you faith, courage and wisdom to follow your heart and to remember you are never alone. Mitakuye Oyasin - We Are All Related And in closing, the reality of my financial situation continues to be what it is…. not good. I am asking all to give what you can and to remember that no amount is to small. Every little bit helps. I am living month to month, and without the support I have received I would not still be living in my home. ***Please note that the 12/3/15 post in my blog is one which I encourage you to share freely.*** Please read and share my story. www.gofundme.com/j55wek

Weekend Update - 12/20/15

A very Happy Holidays to all. For me this is a season of remembering, gratitude and of a reckoning. The remembering, in hearing the stories of where I have been this past year…especially where I was one year ago at this time. Hearing the stories of how I looked and my “mental status”, I marvel at just how out of touch with reality I was. And I am thankful I do not remember much of this period of time. The pieces that do “flash” before me are a sobering reminder of just how sick I was. The gratitude is for all of those who gave of their time and resources walking with me during this time. They say there are layers of the onion and I am finding new layers of just how thankful I am for the love shown me. I cannot say this enough. I remain profoundly grateful to the human beings who shared my journey this past 14+ months. My hope is I can give back that which has been so freely shared with me in the coming months/years. I am once again becoming an active social worker in my volunteer work. A reckoning in coming to terms with my faith and what I do believe in and following through with action on my beliefs. A part of this is showing up to where I am called and the peace I am finding in doing so. I am also finding just how “grey” this part of my life is at this time. One “size” does not fit me and I am becoming more at peace within myself and subsequently with the world around me. Live long and prosper, Mikakuye Oyasin, peace be unto you, namaste and may the force be with you. May you find peace within yourself and walk in harmony with the world. As for my day to day affairs…. more doctors… and if it was possible to give more blood I would be donor on a vampire series. More will be revealed, but things look OK for now. And in closing, the reality of my financial situation continues to be what it is…. not good. I am asking all to give what you can and to remember that no amount is to small. Every little bit helps. I am living month to month, and without the support I have received I would not still be living in my home. ***Please note that the 12/3/15 post in my blog is one which I encourage you to share freely.*** Please read and share my story. www.gofundme.com/j55wek And read my blog at: riksjourney.blogspot.com

Weekend Update - 12/14/15

Oh the memories from last year at this time. Well, in fact, I really do not remember much at all. I have a vague memory of being in the ER at some point(s) but beyond that I am clueless. In talking with those who were with me last year I have been told that I was pretty much “out of it” and spending time with me made for great entertainment and exasperation. I do remember my primary mantra was “this is only temporary”. I was often told (as I have been reminded) that change would come and I would probably remember very little, if any, about this period of time. Indeed this has proven to be true for me. The reasons for this I am told were a combination of “anesthesia brain”, as a result of my initial surgery, and the drugs I was taking at the time. Currently I am doing much better. The many doctor/nurse/lab appointments continue. I am making good progress in all areas and they continue to keep a close watch on my thyroid. Now is the time of watching and waiting …. especially waiting over the next several months. The one most apparent area of concern and impact at this time is the radiation colitis. This is greatly affecting my day to day activities. I have learned to “be prepared” at all times. I am also trying to not let this keep me confined to my home. This will not get better and learning to live with it is the order of the day. One of the gifts of my cancer journey that will keep on giving. I am showing up. I am now volunteering at Winship Cancer Institute. Once a social worker, always a social worker. This is one small attempt to give back what was so freely given to me. I am also applying to do more volunteer work. I am enjoying the holidays in ways I have been unable to in the past. I am practicing a much more active spiritual life. I am much more at peace with my past, my present and my future. I am focused on being here present in the now and being profoundly grateful I have been given another chance to live. I also know I would not be here if not for the grace and gifts of those in my life. I cannot say this often enough, … Thank You. And in closing, the reality of my financial situation continues to be what it is…. not good. I am asking all to give what you can and to remember that no amount is to small. Every little bit helps. I am living month to month, and without the support I have received I would not still be living in my home. **Please note that the 12/3/15 post in my blog is one which I encourage you to share freely. Please read and share my story. www.gofundme.com/j55wek

Holiday Update - 12/8/15

“The 12 Gifts of Cancer” - The Holiday Edition The following is a homage to my cancer and for the great gifts it bestowed upon me this past year. Last year, around this time, I was back, for the second time, in the emergency room following my cancer surgery. Oh the memories from this past year. A urostomy for me. 2. No more testicles for me. 3. No more “urge incontinence” …. and no more bladder for me. 4. A prostate gland no more … where it all began. 5. 43 lymph nodes disappear. 6. Radiation and the everlasting radiation colitis. Nasty. 7. Two-thirds of my thyroid gland removed, with a teeny tiny bit of cancer still to go. 8. Crippling debt. 9. Discovering whole new levels of friendship and family and finding out I am wanted, needed, expected and loved. 10. Experiencing a new level of the meaning of perseverance. 11. Finding out my losses were the source of my greatest gains in how positive I now view the world and the human beings in it. 12. I am grateful for what I have, acknowledging I have the ability to be a more positive force in the world and to be at peace with myself. I am very aware of just how fortunate I am to have the family and friends I have as part of my life. I am extremely grateful for the gifts I have received. Thank you. And the old saying is true. Once a social worker, always a social worker. Volunteering to assist other cancer patients and it feels so good. As the holidays are here, I ask all who would like to give to please donate as my greatest need continues to be paying my bills. And in closing, the reality of my financial situation is what it is…. not good. I am asking all to give what you can and remember that no amount is to small. Every little bit helps. I am living month to month, and without the support I have received I would not still be living in my home. **Please note that the 12/3/15 post in my blog is one which I encourage you to share freely. Please read and share my story. www.gofundme.com/j55wek And read my blog at: riksjourney.blogspot.com

Special note - this for sharing with everyone

Below you will read the story of a long-time friend of mine who is asking for help. He is a former social worker, retired due to disablility resulting from a near-paralyzing collision many years ago (not his fault). This is a legitimate request and a true story. I ask you to read, give what you can, and to share my friend’s story. Richard’s Story - Rik is a Medicare patient due to his disability status, not his age. Beginning in 2011, his PSA level began to creep up until it reached a 10, at which point his primary care physician referred him to a urologist. He also had various urininary problems, all of which were common problems for older men. His PSA count continued to climb and he was diagnosed with BPH (benign prostate hypoxia -- enlarged prostate) and a bladder infection. However, his symptoms slowly became more of an issue and his PSA level went to the high teens, then the 20’s, 30’s and up into the high 60’s. I also had, for three years in a row, biopsies of the prostate. Each showed nothing new - still BPH and a recurrent bladder infection. NOTE: The doctor who was treating Rik “left” that practice very suddenly and a nurse called to tell him that his new doctor (the head doctor at this practice) would now be taking over his treatment. The nurse said "Oh, my! Your PSA level is really high and we need you to come in ASAP to see the doctor." Rik came in a few days later. The new doctor said that yet another biopsy was needed, and he performed it right away. This one came back positive for cancer in August 2014,' Rik also had an MRI at this time, which showed cancer in the surrounding lymph nodes.His PSA at the time was at least in the 80’s. He had two bone scans, which were negative, and then a followup “targeted” needle biopsy which showed positive for cancer. The outlook was not good and he was told that the prognosis was terminal and there was nothing to be done. This doctor's only treatment options initially were hormone suppression and targeted radiation and radiation seeds. At my last visit to this practice, however, Rik was only able to meet with a Physician's Assistant, who encouraged him to begin the hormone suppression therapy and told him there was really no need for him to try anything else or seek a second opinion. The doctor did not see him and would not look at Rik, even though Rik could see him sitting in the office area. This doctor spent very little time with Rik during his visits and avoided him like the plague. After this, Rik followed the strong advice of friends with connections to the Winship Cancer Center at Emory University Hospital and went there for a second opinion. In Rik's words, he finally found (at Winship) "a doctor who actually cares about his patients and in this case the patient was me." A PET scan run at which showed the cancer had progressed beyond the prostate and its surrounding lymph nodes and well into the bladder. Further tests revealed an unrelated thyroid cancer. Because the doctors at Winship persuaded him that he had a life worth saving, Rik underwent the following operations and treatment: - November 2014: The initial operation removed my prostate, bladder, 43 lymph nodes, and remaining testicle. This procedure resulted in his receiving a urostomy and having to recover at home for the next 3 months, with the help of friends. Rik has no family members who care about him, except for one very supportive older cousin in Indiana. His close circle of friends in Atlanta have been his lifeline throughout his illness. - February 2015: February marked the beginning of several weeks of daily (M-F) radiation treatments, which lasted through March. - May 2015: Post-radiation, he underwent a thyroidectomy, which resulted in the removal of more than 65% of his thyroid. - June 2015: Biopsy of remaining thyroid, which produced five samples. Four of the samples were inconclusive for cancer and one was negative. Later that month, physicians that the thyroid cancer was in remission. In the following months, Rik has been diagnosed with diabetes, hepatitis C, and other physical “problems” related to my cancer treatment. All of these have further increased his medical costs and severely impacted his life. HOW YOU CAN HELP While Rik is lucky and all of us are grateful that he is alive, his struggle to survive cancer has come at a considerable financial cost and he needs your help. He is a 62-year-old disabled/retired social worker living on a fixed income and was unprepared to absorb the breadth and depth of medical costs associated with the procedures, treatments, and ongoing examinations to ensure he remains in remission. Before these events started, h was able to perform some “odd jobs” at times to bring in minimal extra funds. The “odd jobs” consisting of helping people clean their houses, going to the store/shopping for and with people who needed assistance, and going with people to their doctor’s appointments. Once a social worker always a social worker. Due to the physical toll of my operations, treatments for the cancer and other health issues, he is no longer able to continue performing any “odd jobs” to bring in extra funds. Please be aware that With his fixed income, he would be able to meet normal bills and remain in his home. He cannot, however, handle this crippling medical bills on his fixed income. Medicare only pays 80% of the medical costs that it covers. That 20% of bills like Rik's is a crippling amount for someone who has no way to supplement his income. You can make a huge difference in this one life.Your kind and deeply appreciated donation(s) can help a wonderful person remain in his home, pay down medical/other bills, and reduce the added stress of financial fears piled on top of dealing with severe medical problems for a fellow human being. Achieving his fund raising goal would allow him to pay off enough of his bills and remain in his home. (Although I would like to see him raise a little more so that there is a cushion against future medical bills.) I know this has been long reading, but thank you for sticking it out to the end. Please consider doing whatever you can for Richard Hill. In closing, I ask all of you to help my friend to keep his home. To donate please go to: www.gofundme.com/j55wek

Weekend Update - 11/28/15

Weekend Update - 11/28/15 Life does indeed go on. I have had a little “excitement” on the medical front over the past couple of weeks. After some tests it has now been determined I have “radiation colitis”. This is one of the gifts that will “keep on giving” as a result of my radiation treatments. However, as the doctor and I looked at each other while discussing this diagnosis, we agreed that having this is much better than having cancer. I have not delved into the symptoms I am experiencing due to the nature of said symptoms. I have almost completed my Hep C medication treatment and all my bloodworm looks excellent so far. Only time can confirm these results. My energy level is up and it feel good to be able to do more than one thing each day. My loss of the ability to assist others and perform “odd jobs” for folks has been another cost of this disease. I am realizing the physical impact of my surgeries and other treatments are fundamentally changing life as I once knew it. This is new territory for me and I am still attempting to come to peace with this. Life goes on. I am becoming more aware just how fortunate I am to have the family and friends I have as part of my life. Thank you. As the holidays are here, I ask all who would like to give to please donate as my greatest need continues to be paying my bills. And in closing, the reality of my financial situation is what it is…. not good. I am asking all to give what you can and remember that no amount is to small. Every little bit helps. I am living month to month, and without the support I have received I would not still be living in my home. Please read and share my story.

Weekend Update - 11/20/15

Weekend Update - 11/20/15 One year ago I had 3-5 months to live. Only as a result of some good doctoring and the compassion of my friends and family am I here today. The following is a list of my “thank you” to all. Although I feel this is very inadequate, this is the least I can do. Thank you all for being willing to be of service. I am reminded every day there is good on the world. I am so grateful for all of the gifts I have received over this past 16 months. I cannot value one more than another. All are sacred to me and all were needed. I am a very fortunate human being to have you all in my life. The following are my recollections of some moments with each of you that not only saved my life but have given me a life worth living. Friends, who upon hearing my terminal diagnosis, did not minimize contact with me or disappear. Instead they maintained our regular contacts and encouraged me to do the same. Thank you for being willing to talk about death and how best to prepare for it. I can strongly recommend to have your will, DNR, and other personal papers/arrangements already prepared and to not wait until death is literally staring you in the face. The peace you all have given me in this process is very precious to me. Thank you for your gifts of spending time with me, listening to me and sharing your experience strength and hope with me. Reminding me continuously that I am not alone and would not be alone as my cancer journey unfolded. And thank you for the cards and gifts. Tangible proof that you care and that humor is good. Thank you for being honest with me by “pulling my head out of my ass” and turning the lights out and shutting the door to my “pity party room” while at the same time letting me know I was, and am, loved and am a valuable and necessary human being. Thank you for all the trips to and from the doctor, hospital and pharmacies. Thank you for the trips to see other people and helping me to remember the world was still out there. Thank you for being with me before, during and after my surgeries. Note to self and all of you …. never, never never, have a surgery anywhere near a holiday. Thank you for transporting me to the ER (twice after surgery) and sitting with me as those events unfolded. If there is a hell, waiting in the ER is one floor of it. Thank you for listening to me - and putting up with me - as I recovered from my surgeries. I do not remember a lot of this but the stories a few of you have shared with me let me know just how “out of my mind” I was. Thank you for the “personal care” given. Everything from the enemas and bathing to the wound care. I am so glad I did not look at my incision until later into the healing process. Thank you for being willing to -literally -see “all of me” through these events. At least you can say you have seen the dark side of the moon. And a special thank you to my nurse for the wound care and great advice about how and when to take my medication. You really helped chill me out and teach me to not be such a pain in the ass. Thank you for all the food and trips to the store. Thank you for just visiting and spending time. Thank you for your gifts of money and other resources. I am able to still be in my home only as a result of your generosity. And I must say thank you for the gift of your time. The nights spent watching over me and the days spent with me. Please know that I have adopted you all and consider you family. I am a very grateful human being and will do what I can to pass on what has so freely been bestowed upon me. Much love to you all. As the holidays are here, I ask all who would like to give to please donate as my greatest need continues to be paying my bills. And in closing, the reality of my financial situation is what it is…. not good. I am asking all to give what you can and remember that no amount is to small. Every little bit helps. I am living month to month, and without the support I have received I would not still be living in my home. Please read and share my story. www.gofundme.com/j55wek

Weekend Update - 11/13/15

Note to self: You have no idea what is going to happen. My journey continues with more adventures on the way. I continue to do little better every day. More energy and more gratitude for the people in my life. Not much more to say at this time. The bills keep coming with new ones on the way. As a friend says, “I’m living the dream” …. but I am living and I need to remember that. Assisting a friend with their chemo continues to give me that most precious of perspective. I am a very fortunate human being. The 21st fast approaches and a celebration I will have. On another note, and in closing, the reality of my financial situation is what it is…. not good. I am asking all to give what you can and remember that no amount is to small. Every little bit helps. I am living month to month, and without the support I have received I would not still be living in my home. Please read and share my story. www.gofundme.com/j55wek

Weekend Update - 11/6/15

One of the sayings I have been least fond of is “more will be revealed”. I am tired and I am reminded, once again, that those who practice medicine - the doctors and other healthcare practitioners - are “practicing”. This is one of those times where patience is the virtue I am in most need of. Also to be reminded - again - I do not know what is going to happen. I am very grateful I have people in my life that continue to teach me how to be a better human being. Their gifts of time and resources shared with me along with the sharing of their ongoing “trials and tribulations” and the normal day to day “stuff” give me one of the greatest gifts I have ever received. Said gift being the gift of perspective. This gift has allowed me to look up and see the world, to live actively in it, and not be so self-consumed I become a miserable human being. And I am able to begin to see the gifts I have to offer the world and act on them. The resulting feeling of gratitude is a very good thing. In a few weeks is the anniversary of my surgery. I consider this my second birthday. So, being almost one year old, I plan to do my happy dance on 11/21/15. Wherever you may be I am inviting all of you to do a little happy dance at some point during that day. On another note, and in closing, the reality of my financial situation is what it is…. not good. I am asking all to give what you can and remember that no amount is to small. Every little bit helps. I am living month to month, and without the support I have received I would not still be living in my home. Please read and share my story. www.gofundme.com/j55wek

Weekend Update - 10/30/15

Life does indeed go on for me. Good news this week. I will not have to see my oncologist for another 6 months. Blood work/scans all good. There is a colonoscopy in my near future. Also my viral load is now very very low and the medication appears to be working. Only 4 1/2 weeks to go on this medication. For the results so far I will continue to deal with my “poo poo” undies and the fatigue. Lots of labs to go and months of followup, but my dream of only going to the doctor/hospital every three months just might become a reality in this coming year. The rollercoaster of emotions continues. Most days are good and writing is helping. As the holidays are fast approaching (some might say they are already upon us) and considering that last year, at this time, my cancer diagnosis strongly indicated I would not be alive for the next holiday season, I am grateful just to be here. And I am grateful to all of those who gave of their time, resources and spirit so that I am able to be here now writing this. Thank you is not enough. All I can say and do is to let you know that you are much loved and appreciated. I am in your debt and I will pass on as much as I am able the gifts you have given to me. In the upcoming weeks is the anniversary of my surgery. I consider this my second birthday. So being the almost one year old I am I will do my happy dance on 11/21/15. Wherever you may be I am inviting all of you to do a little happy dance with me on that day. On another note, and in closing, the reality of my financial situation is what it is…. not good. I am asking all to give what you can and remember that no amount is to small. Every little bit helps. I am living month to month, and without the support I have received I would not still be living in my home. Please read and share my story.

Weekend Update - 10/23/15

Reporting live from the Mothership. My journey continues. I am continually amazed at the bills rolling in. My goal is to not have to be seen by any doctor/nurse/lab/hospital for 3 months. The time from “date of service” to when I find out how much said service costs me is sometimes longer than the gestation period of a human being. Even when you try to find out what bills are in the pipeline, no one seems to know. As I have stated before … cancer is expensive. There is a lot of money to be made in the cancer business. There can be, at least in my case, a lot of money to lose if your a cancer patient. Regarding my physical progress…. I continue with the Hep C treatment. So far, so good. Just some fatigue and “bowel problems”. A friend asked if I was going to dress up for Halloween, and if so, what would I be. Well my friends, if I am able to dress up as anything, this year it would be as a big baby wearing only a diaper. And to add to the reality of my costume, my diaper would be “slightly soiled” because it really would be at this point. I am still writing and this is good. There is nothing like writing to encourage those “moments of clarity” that I wish would come more frequently. I do wish that there was not so much pain in the world. Today I am trying my best to live my life so as not to add to it. My financial reality continues to suck, so once again I am asking for everyones continued support. Every little bit helps. I am living month to month, and without the support I have received I would not still be living in my home. Please read and share my story.

And now for a special announcement = 10/20/15

One year ago today I received a terminal diagnosis from my doctor that would severely impact my life. The news being that my prostate cancer had spread into my bladder and said cancer was “on the move” and of a very aggressive type. The million dollar question was what to do now. I had previously been told by my previous doctor there was nothing much anyone could do and all he could do was to put me on hormone therapy. I later found out this doctor’s treatment was horse crap … as said treatment would be like trying to put hot butter up a wildcats ass. In other words this treatment would not do anything other than cost me money until I died. Of course it would also make him a steady stream of income until I died. My new doctor told me he did not believe in doing nothing and proposed a radical surgery which would remove my prostate, bladder, testicles and assorted lymph nodes etc. This would be followed by radiation treatments and I would also end up with a urostomy. This procedure may not “cure” me but would at least buy me some time. The choice of me doing nothing would result in my death .. and my death would not be long in coming. I chose to have the surgery, which is the only reason I am able to write this now. Being told you have terminal cancer was not what I had planned for that day. Being alive and writing this far exceeds any hopes I had upon learning about my cancer diagnosis. For the full story please read my blog. My lesson for today is “I do not know what is going to happen”. So on this, my “cancer anniversary”, I would like to give another round of “THANKS” to all who have walked with me this past year. Much love to all for all of your support and patience…. and love. HAPPY ANNIVERSARY TO ME!!! My financial reality sucks, so once again I am asking for everyones continued support. Please read and share my story. www.gofundme.com/j55wek And read my blog at: riksjourney.blogspot.com

added update from 10/17

Weekend Update - 10/17/15

My treatments continue and the world continues to spin. My revelation this week has been “Once a social worker always a social worker”. I have been able to support a friend who has begun chemo and radiation treatments. As people were there for me I am now able to be there for someone else. This has been the highpoint of my week. It feels real good to be of service. My life continues and my writing continues. 

There is a beginning of a purpose for my life to come. I have come to the realization that the powers that be are not done with me yet so I need to get off my rear and “get busy”. 

While my life is impacted by my physical disability and there are added limitations due my cancer journey, there are a few things I can do to be of service to others. It is good to have healed enough to begin to discover the options I do have. It is good to be of use and not view myself as just a burden. 

I do have bad days but also good ones. I am finally able to show up and be an active participant in life. 

To borrow a phrase, “just for today” I will do my best to live and not just survive.

My continued thanks to all who are walking with me. Your gifts of time and resources are much needed and appreciated. 

The financial reality is also once again asking for everyones continued support so please read and share my story.

www.gofundme.com/j55wek

My continued thanks to all who are walking with me. Your gifts of time and resources are much needed and appreciated. The financial reality is also once again asking for everyones continued support so please read and share my story. www.gofundme.com/j55wek

Weekend Update - 10/11/15

This has become a time of reflection for me. A time of looking back on the past year and a half. This time period has been one of tremendous pain and sublime joy. During most of this rollercoaster ride I have been at peace with whatever the outcome might have been. 

I do know I am truly grateful to those who have traveled with me. Those who quietly, and not so quietly, listened, laughed and showed me love. Thank you for sharing with me the things I needed to hear no matter how “receptive” I was. I thank you for showing up and just being the brilliant and wonderful people you are. I would not be here if not for your support.

It is also the time to look towards my future and I am so grateful to have a future. There are challenges to be met and changes I will have to live with. I am 62 years old and between the “age factor” and my physical issues this is a whole new world that I am learning to live in.

I am also writing about how I have arrived at this point in time with the peace I have about my future. That is another part of my story which will be shared here. Like peeling an onion I am finding layer after layer of how and why I am here in this moment and what I truly believe in and about life itself.  There are lots of new lessons being learned by this human being.

My continued thanks to all who are walking with me. Your gifts of time and resources are much needed and appreciated. 

The financial reality is also once again asking for everyones continued support so please read and share my story.

Update - 9/30/15

This is a time when my journey consist of putting one foot in front of the other, continuing to breath in and out and to continue to do my best just to do take the next right action. The impact on my life as a result of my “health issues” over the past year is becoming more clear. 

Being previously disabled (before cancer, etc) I had learned to “work around” and/or do my best to ignore the limits imposed by my physical condition on my day to day life. I came to accept these limitations and act accordingly …. for the most part. 

Now I am facing new limitations on my day to day life and learning what these limitations are as well as what they may be in the future. The impact of this new reality for me is most sobering. I am deeply reflecting on the loss of activities I am no longer to participate in. I am sad. I am also determined to, once again, “work around” these new limitations and to do my best to show up for life as much as I am able.

Part of this journey is looking at my life and becoming more aware of the regrets I have. I will share this much. I regret not being brave enough to trust my family or friends with who I was as I was growing up. I was terrified of being rejected and being alone. There is a part of me which is aware that “I did the best I could with what I had” and “hindsight is 20/20”. 

I can accept how truly clueless I was and the pain and sadness I created for those in my life. I am truly sorry for this.

Please note: I am also quite aware of just how clueless I still am. There is a great peace with knowing you do not know and are just along for the ride. My plans are to work hard so have a great end to this ride.

I am still waiting to hear regarding the Hep C treatment. I have been approved but am waiting on whether or not I will receive financial assistance for this. I was told my co-pay for the drug would be $3500.00. More will be revealed about this …. hopefully soon.

Living with diabetes is an added expense and inconvenient but has been a blessing in regards to my diet. I am still amazed at how much crap I was eating while I thought I was eating “healthy”.

I was also reminded that while I do have my problems there are others out there who are in far worse shape than I am. My visit to the hospital today reminded me, once again, of this fact. Perspective…. is good.

I do believe this update is long enough. 

My continued thanks to all who are walking with me. Your gifts of time and resources are much needed and appreciated. 

The financial reality is also once again asking for everyones continued support so please read and share my story.

Update - 9/20/15

Once again I am at the crossroads of whether or not I should be honest about where I am emotionally, physically and spiritually. The reason being is my concern “what other people think” and how they react (or don’t) when my news is not all “good cheer”. As a result, I must share the following. 

I am not looking for “magic words of wisdom”. I do believe there are times when there are none to be had. The best gift is one of time spent with a good ear and the peace that comes with quiet. Add to that good  discussions with and about others lives. A great way to help me look around and be in touch with the rest of the world and not be so self-obsessed. This perspective is worth its’ weight in gold. My sincere thanks to  those who continue to share their trials and tribulations with me.

Emotionally there are times when I feel like a “nut” and times when I don’t. Through all of these hills (mountains at times) and valleys there has been that part of me that knows I will be “OK”. I also know that for me there was a greater peace when my prognosis was terminal. I had a definite plan of action and my worries became almost nonexistent. 

Now that I am in remission (except for the questionable bit of my thyroid gland left) and doing much better, in spite of the new illnesses (diabetes and hepatitis C), my continued survival has brought with it very legitimate concerns as to how I am going to pay my bills and be able to hold onto my home of the past 15 years. Of course living as a cancer “survivor” comes with its’ own set of concerns and emotions. 

Physically I am now being reminded why I was already disabled when my journey with cancer began. Chronic pain is now back on the menu, not that it ever left. And, to be polite, going to the bathroom will never be the same again. Enough said about that.

Spiritually… I am now writing about the times when I have come face to face with life and death. I will share this part of my story when it is done. I am finding this is difficult to write about but I am finding this very necessary to do at this time. As I have shared with many others ….. better out than in. I also believe this will be of service to someone out there, just as the writings of others have been of service to me.

My continued thanks to all who are walking with me. Your gifts of time and resources are much needed and appreciated. 

The financial reality is also once again asking for everyones continued support so please read and share my story.

Update - 9/11/15

Another week of doctor appointments and an MRI of my abdomen and pelvis. Good news on the liver scan as there is no evidence of cirrhosis. The doctor is asking for approval for treatment which will begin as soon as said approval is granted….hopefully.  

My blood sugar levels continue to improve and I must note that I never thought I would eat this healthy in my life. There is still much for me to learn about living with diabetes. Also found out it is type 2 diabetes. My thanks to those who have shared their experience, strength and hope regarding “living with diabetes”. This is very much appreciated.  

The doctor also has started me on thyroid medication as this will help inhibit the growth of the thyroid cancer. My voice continues to sound like Harry Belafonte. I declined, at this time, going to an ear/nose/throat doctor to further evaluate the condition of my throat/voice changes due to the thyroid surgery. I am seeing enough doctors for now.

As to how I am doing….. I am OK. My energy levels continue to improve and I must say exercise is good. I am able to walk without falling down as my stability has greatly improved. Humor is good and I am grateful to be able to laugh at life and some of the people in it (including myself).

My continued thanks to all who are walking with me. Your gifts of time and resources are much needed and appreciated. 

The financial reality is also once again asking for everyones continued support so please read and share my story.

Weekend update - 9/5/15

The journey continues and what a rollercoaster ride it has been. A very positive week overall. 

I have my next scan on this coming Wednesday. Hopefully this will be the last one for a while. No news would be excellent news for me. 

All other medical conditions are coming under control. It is possible to lead an almost sugar free life. More will be revealed as to the treatment I will receive for the hepatitis C. I do have the most prevalent type which works out best for me.

I am keeping this short and please wish me luck and as someone reminded me… prayer never hurt anyone.

On this note, I end this update. 

I ask everyone to please share this. Hopefully it will be of service to someone out there. 

And the journey continues……..8/31/15

I had a doctor visit this morning and the news was good. While I do have hepatitis C, the hope is my blood work will show I can be treated with the new drug therapy now available. This new treatment is less time-consuming and comes with minimal side-affects.

*Of course there will be another MRI/scan done to confirm the condition of my liver and to hopefully show that “nothing else” is going on in my body prior to actually treating the hepatitis C. Always have to look out for the cancer…. 

On the diabetes front I am still in the process of learning how to help control my diabetes thru diet and exercise. The big learning curve for me is discovering what to eat (and when) in order to control my sugar levels. My sugar levels have come way down and are now below 300. I cannot wait until my levels are below 200 or lower (actually back into the “normal” range). To say I feel a little better is an understatement.

As to “how I feel” about all of this……….. 

I am relieved my health issues appear to be leveling out. All of this, while serious, is not a big deal compared to the cancer. Needless to say, but say it I must, I do hope nothing else health wise shows up. I have had enough and need a break as well as no new bills.

At times I am stressed out and depressed. Not so much about the medical issues/cancer, although it would be nice to not have to have tests/scans looking for cancer for a while. I am primarily concerned with my finances and whether or not I will be able to remain in my home.

People have shared with me that “things will work out”. There is that part of me which has made peace with the “cancer”, but there is another part of me which is very concerned with what this disease has and is costing me as I continue to be a survivor. I will not say more at this time.

Sometimes I am just not able to talk about rainbows and sing “Zippity-Do-Dah” it’s a wonderful day.

Other times I am at peace and can really laugh at life and all of it’s absurdities. As I have said before, with out humor what do we have.

On this note, I end this update. 

I ask everyone to please share this. Hopefully it will be of service to someone out there. Once again please see below…..

To help please go to:

www.gofundme.com/j55wek

Update - 8/26 /15

Sometimes it is not the cancer but everything that comes after the cancer. 

I would so like to be able to not have to discuss this. “This” being my ongoing journey with cancer and the after effects of my diagnosis/treatment and now the new diseases (hepatitis C and  type 1 diabetes) which are currently being addressed and evaluated. 

At this time I can do nothing but wait until I see the hematologist on this coming Monday. I, hopefully, will receive some information as to what exactly is going on with my liver. 

I would love to say something very profound and awesome at this time. I can say I am breathing in and out. I continue to manage my diabetes with the help of friends and the folks at Emory. So far so good. Slow and steady wins the race.

Update - 8/19/15

New news! It’s official. I can now add diabetes to my medical resume. Yes, I am now officially a diabetic. I spent another great day at the hospital.

Between my astronomical blood sugar levels and the “weirdness” with my liver I am just going to keep on keeping on. As to how I “feel” about this latest development….who knows! Well I do a little bit. I am still processing the but feel good that they did find this and it is very treatable, but I am overwhelmed just a bit. Time for me to do my part, that being more exercise and paying close attention to what and when I eat. 

I see the hematologist on Monday, the 31st. The folks at the hospital are most anxious that this happens, as am I.

With all of this come more bills. Try as I might to ignore them they are still there and ever increasing. It is month to month now. I will ask once more for all of you to please share my story. Thank you

Update - 8/14/15 

New news. I have an appointment with the hematologist on Monday the 31st. I see my endocrinologist this coming Wednesday. Now I wait for more answers once again. 

In the meantime .... my eyesight has worsened over the past 3 weeks, quite radically according to the eye doctor, but the good news is my eyes look good (except for a little cataract) and new glasses will solve this. I had just ordered new glasses this past February .... nothing like getting older.  

My fatigue continues and as this and my eye issues are the most inconvenient problems at this point in time, I am extremely grateful that cancer is not, at present, the “issue”.

And now for a note of gratitude to all those who have and are giving me the gifts of time, patience and listening as I verbalize my way through each day. I do hope to return to a time where cancer/illness are not the primary topics of conversation. 

I must thank, again, the friends/family who have told me what I need to hear in a most loving, caring and direct way. In short, thank you for pulling my head out of my you know what by reminding me I do not know how my story ends. 

Lately there have been times when I have been overwhelmed, afraid, depressed and profoundly sad. This too is part of my journey. The “unknown” regarding my medical status combined with the bills and future bills, which just keep rolling in, are making my future not look to good to me. 

In spite of all of this, I do believe I will be around a lot longer. I do hope to be able to remain in my home of the past 15 years. Once again I am reminded I do not know what is going to happen. More will be revealed. 

I wish to thank all those who have given of their time and resources which have allowed me to remain “sane” and continue to live in my home.

I ask you all to share my story.   

Update - 8/8/15

Another week of waiting for results of my blood work and ultrasound. And there is some news. I found out I have the hepatitis C virus which is (hopefully) the main and only culprit in my liver “problems”. Hep C is treatable as far as I know. I am very grateful for this. Of course with the treatment come more medical bills. I was really hoping to get to a point where “new” bills would stop, at least for a little while.

I am waiting on the hematologist office to call with my appointment time. I am hoping to hear from them by Monday and have an appointment set for next week. 

I can tell you the fatigue is intense and I am drinking a lot of water due to cotton mouth. I am tired. My eyesight has also changed where new glasses are definitely in order. 

*Please note: there is also a part of me jumping up and down for joy due to the fact that this has not been diagnosed as cancer at this time. 

I will not find out everything until I meet with the doctor and in all likelihood have more tests done. At this point I am dealing with this latest development as an “inconvenience”. And an inconvenience it is.

As always I was trying to wait until I had something more definitive to report. But as a friend reminded me today, I need to share what is going on to allow people to walk with me and not try to walk with this alone. This seems to be something I need to keep working on.  

So my journey continues and my thoughts and prayers go out to all. 

 

Update - 8/3/15

The journey continues... I have had more blood work drawn today following my ultrasound on this past Friday. Not much to say about exactly is going on medically other than the focus seems to be on my liver and blood. 

A friend asked me the million dollar question ... “How are you feeling?”. At this point I am numb and staring fear in the face. The amount of horrible outcomes I have come up with in regards to this latest medical mystery is fascinating to me. What will be will be. More will be revealed. 

I was reminded by another friend to remember I do not know what will happen and to “follow my gut” as different treatments are recommended. I have to remember I do have the last say as to what treatment is or is not done. 

Above all I need to remember I am not alone. To remember this I am finding takes active work on my part. That means fighting through the negative thoughts in my head ie. - nobody really wants to hear this sad story / it is wrong for me to “burden” others with this /  nobody really cares anyway .... just to mention a few. There is a part of me that does know better as there is and has been massive evidence to the contrary.

So once again I thank all who are walking with me. Without you I could not continue this journey.

Update - 7/29/15

The journey continues... I go in for scan at Winship on Friday morning. Please send positive energy and for those that do...pray harder. My continued thanks to all who are walking with me. 

Update - 7/28/15

The journey continues... Just got word from the doctor that I am being set up for an ultrasound of my abdomen in a few days. Liver blood work continues to be off. As I know more I will share it. One of the lessons this journey continues to teach me is patience. What can I do but laugh and continue to carry on. My continued thanks to all who are walking with me. The gifts of perspective, patience and the fact that I do not know where this journey goes or how/when it will end are just a few of the many you all have shared with me.

7/25/15 Update: The healing continues with a “bump” in the road. I found out this past couple of weeks that my blood work is “not quite right” in a few areas and have had a couple of tests and a medication change. I have also felt “not quite right”. I have more tests this coming week and I do hope this issue will be successfully resolved. As I habitually underplay some of my health issues it is concerning to me the doctor was not “laughing along” but was seriously concerned. I will inform everyone as more information becomes available. 

Well my journey continues and I am reminded again this week that cancer is “bad”, to put it mildly, and getting more expensive every week. Dealing with the stress of what will happen to me and not know if I will be able to remain in my home I am quite sure is not “helping” my recovery. 

I am reflective of the experiences I have had, and while some have been absolute horrors, each one was necessary and has enabled me to be here now in this present moment and to be grateful I am still here. I must remember I do not know how this (my) story ends.

So, I must keep breathing in and out and must continue to ask for help .... which I am doing now. This is hard for me to do but reality is what it is for me. I need help.

As I the future unfolds I was reminded by a good friend yesterday that while my situation is what it is, there are others out there with problems greater than mine. 

I am trying to recover as gracefully as I can and am very grateful for all of the assistance given me. Just for today, I am a very grateful human being.

Just a note to mention the added stress of dealing with the bills associated with my illness. It is astounding to me how much the right hand does not know, or appear to care, what the left hand is doing.

One conversation of note today....regarding mounting medical bills. 

A conversation with a bill collector who called about a group of bills dating from February of this year for which I have not received any information. I was also informed at this time I would be receiving a letter in a few days time regarding this group of bills which would let me know what exactly these bills are in regard to. 

So, I have a group of bills (which I am unaware of) already in collection and am being informed of this in a phone call. I had to laugh to keep from crying. Below is a small sampling of this insanity. The following begins midway in this conversation.

Me:   Could you please e-mail this information to me?

Bill Collector:   No, we can’t do that.

Me:    Why not? 

Bill Collector:    We do not have the ability to communicate with you        or handle your account on-line thru e-mail or for you        to pay this account on-line.

And later in this same conversation.....

Bill Collector:   Would you like to give us your e-mail address?

Me:   I thought you said my e-mail address would not be of any help           to you?

NOTE: I never got an answer to this. 

I am very aware this happens to many others and all I can do is pray for everyone and do the next right thing regarding this situation. I am so grateful for my friends who are walking with me. I could not do this alone.

The following is a brief history of my journey with cancer and some lessons learned. The beginning of my written story was begun on December 20, 2014. I will update my story as my journey continues. Once again it is my profound hope my story will be of good service to cancer patients, their families and friends, as well as to the community at large.

THE BEGINNING -

It has taken me sometime to begin to tell my story of my ongoing relationship with cancer. I do view this as private and have hope that by sharing my journey thus far I can help others whom might have to confront receiving a cancer diagnosis.

PART 1

Over the past 3 1/2 years my PSA level began to creep up. When it hit 10 I was referred to a urologist. I had trouble peeing - starting, stopping and urge incontinence - common problems for older men. My PSA continued to climb and I was diagnosed with benign prostate hypoxia (enlarged prostate) and a bladder infection. However my symptoms slowly became more of an issue and my PSA level went to the high teens, then the 20’s, 30’s and up into the high 60’s. I also had, for three years in a row, a biopsy of the prostate which showed the nothing new - still BPH and a recurrent bladder infection. The doctor who was treating me “left” that practice suddenly and I was informed over the phone that my new doctor (head doctor at this practice) would now be taking over my treatment. 

When I was informed of the change of doctors the nurse on the phone with me said “oh my, your PSA level is really high and we need you to come in ASAP to see the doctor. I showed up a few days later. This doctor informed me that another biopsy was needed and was done. This biopsy came back positive for cancer. I also had an MRI which showed the cancer in the surrounding lymph nodes. My PSA at the time was at least in the 80’s. I  had 2 bone scans which came back negative and another “targeted” needle biopsy which of course showed positive for cancer. The outlook was not good and the information shared with me was that I was pretty much screwed. This doctors treatment options were hormone suppression and targeted radiation and radiation seeds. At my last visit to this practice I was encouraged to begin the hormone suppression therapy and told there was really no need for me to go anywhere else by a PA --- the doctor did not see and would not look at me even though I could see him sitting in the office area. This doctor spent very little time with me during my visits and the and avoided me like the plague. 

My lessons learned to this point in the story are as follows:

1. Men, when your PSA  level hits 20 - demand an MRI to see what is really going on. If necessary - go get a second and third opinion if needed.
2. Avoid “fee for service” doctors. Find a doctor that is going to treat you for what you need and not look at you as a walking cash machine. This practice was willing to watch me die as long as they could bill me.  
3. When you have a reservation as to how you are being treated by your doctor and their practice..... go somewhere else.
4. Ask questions and feel free to take someone with you to your appointments. Write any questions down and ask them. Good doctors appreciate this and if a doctor gives you any grief for these actions walk away.          

Part 2

After being treated like crap by this doctor and many conversations with friends I followed directions and went to a teaching hospital for a second opinion.

What a concept to find a doctor who actually cares about his patients and in this case the patient was me. There was some verification as to what the hell was this other doctor was doing. I got scans done which showed the cancer well into the bladder also. 

The scans also revealed problems with my thyroid (which is really enlarged), which will have to be removed after treatment for this cancer is completed. 

 This brilliant doctor said there was something that could be done as opposed to sitting back and dying. 

I had a major surgery to remove my prostate, bladder, testicles and surrounding lymph nodes. My recovery from this has been difficult and is ongoing. I will start radiation and hormone suppression in a few weeks once I heal more from the surgery. I now have a urostomy which is permanent and which I am learning to live with.

The key thing is that I am alive and have a chance to stay this way for at least a while longer. 

I would not have this chance at life if not for the many people in my life who have given of their time, life experiences and resources to walk with me on this journey. You know who you are and please know I acknowledge the sacrifices you have and continue to make to support me as my journey continues. As a good friend reminds me - nothing is ever easy. That sums up my journey so far. More will be revealed.

It’s Sunday morning, 5:18 in the AM and I am up. My Sleep schedule needs some work. I do have another lesson to share with all. This is # 5….

5. This experience has taught me the medical record (the record of what occurs during your doctors visit) is written, at times, more to cover your doctors ass than to be a record of what actually takes place during your visit. A solution to deal with this is always to document for yourself a record of what questions and information is exchanged and let your doctor know you are doing this. Good doctors will appreciate this. 

My bad doctor, you remember the one who would have watched me die while billing me all the way (fee for service), wrote notes that read like one of the greatest sci-fi fantasy stories of all time. I have copies of these and am still amazed, angry and disgusted at how full of crap (out right lies as to what occurred during the course of my visits) these medical records are. 

So the other part to this is to request copies of your medical records periodically to see if they are accurate or “fantasy”. If there are issues …. walk away.

Monday, December 22nd

Notes for today ——— I am a month out from the surgery. The first 3 weeks were a fog of dehydration (resulting in 2 return trips to the hospital for fluids and finally a medicine that helped with the nausea), emptying and measuring the drainage bulb and urostomy (pee) bag every 1 to 1 1/2 hrs - to 2 to 2 and 1/2 hours, trying to drink fluids and eat, taking my medications at precisely the correct time ……… all with me trying to be “in control”.

This resulted in sleep deprivation which made these activities even more difficult for me and for the good people that watched over me. My profound thanks to them for the over nights, meals delivered, personal care (wiping my booty among other things), words of encouragement from the profound messages and notes of hope to the words of profound wisdom to me to “Chill the fuck out and sleep”. And a message reminding me that nothing is ever easy. 

The lessons I am learning include that I will never again take for granted the abilities to: wipe my own behind; to bathe myself; to bend over to pick something up; to be able to travel anywhere without assistance; to clean up my home; to prepare and cook food; to read something longer than 2 sentences and have it make sense; to watch tv for longer than 2-3 minutes and be able to follow the program. 

I must offer again my profound gratitude to all who have and are showing up and supporting me in this recovery and who walked with me as I was “out to lunch” during this process. 

Someone once told me my greatest strength would be my ability to ask for help. I had not begun to understand this until now. Now that I can think clearer and have begun to regain some of these abilities I am finding out just how hard it is for me to keep “asking for help” even though I need it. But as a friend shared with me, this is where you have to get over yourself and ask for what you need. My goal is to do this. 

I am beginning to feel the feelings of loss, and that is another part of this journey. As someone who tends to stuff feelings, this part of the journey will be undiscovered country for me. But it is country that I need to explore so I can heal and live the life I have. I know the feelings are there as I am crying at times and when watching Xmas movies and even commercials. More on this later.

Tuesday noon - Got out of the house today for the first time that did not involve a trip to the hospital or the doctor. Saw a good old friend, shed a few quiet tears and am now more determined than ever to get out and about as quickly as possible. The cabin fever has set in. My thanks to K for driving me. It was good to see the world is still there and people still don’t know how to drive. 

Finding out the issues of living with the urostomy and the limitations which I will have to learn to live with. My ostomy supplies are late so I am having to use different bags which has caused almost a daily need to change, not to mention problems with leakage. It’s also the holidays so the home care support is not on time. 

On a more real note the feelings are here and I am trying to get out of my own way and allow myself to feel them. The fear of the future with the continued cancer treatments coming up,  the ongoing financial fears and fear of -- well -- being alone, becoming even more dependent, the loss of sexual function and desire are all overwhelming at times. I am on that roller coaster of feelings. The fear of even talking about this because who really wants to listen and the fear of people staying away due to the intensity of the subject matter.

While I know I am not alone and people will show up and I have to ask for this support the feelings are still there. No magic answers - just putting one foot in front of the other and trying to maintain some perspective and humor. I have to be able to laugh at some of this, be grateful it’s not any worse because it could be, and get more used to my plastic penis with an on/off valve.

That is enough for today. Time for more bad xmas movies and some tears.

Well, it’s xmas eve. The nurse just left. The wound is healing nicely but wound care must be done daily. Another reason to ask for help. Most importantly the urostomy supply situation appears to be resolved. Hopefully supplies by Friday and have a fallback bag that they do have in stock. 

More feelings and questions of why this happened to me. A lot of anger and sadness. Trying to do the next right thing and take great care of myself. This is where faith comes into play for me. I believe what I believe and this does give me a good framework from which to continue this journey. There is an intense feeling of aloneness as I allow myself to walk through the feelings involved. This, to this point, is the center point of my journey so far. No one can travel this for or with me. It is me and all that I am that must walk this path. I draw strength form all my ancestors who have come before me and from those who have befriended me. I know I am not alone and there is nothing to fear. This is something to hold onto as my journey continues.

I hope this in some small way is of help others.

Several years ago I wrote what follows. I share this now because it seems the right thing to do.

This is the time of remembering, of quiet reflection. Remembering all which the Creator has given and revealed.

Remembering that I am the result of all my ancestors faiths, hopes and dreams. That my strength is unlimited when I acknowledge my connection to all my relations.

Remembering the ground I walk on is sacred ground for it is the dust and blood of my ancestors. 

To remember all of my relations and my connectedness to all things. I am a part of the circle of life.

A time to reaffirm my faith and to give thanks as I continue my journey on the sacred road laid before me.

This is also a time of new beginnings, a time of renewal of the spirit. A time to give thanks to all who have shared my path over the years.

It is my prayer that all of your hopes and dreams come true and to say thank you for sharing my journey and for the gift you have given me. 

May the Creator grant you faith, courage and wisdom to follow your heart.

Mitakuye Oyasin --- we are all related

Now back to the xmas movies and some more tears.

The day has arrived. Happy Xmas to you or Happy whatever for whatever you do or don’t believe in. I rejoice in what ever a human being “believes” in if it causes no harm to others and helps people to be respectful and kind to one another. In other words, practicing spiritual principles in dealing with others as well as yourself. It would be nice if the “world” would do this every day and not just pay lip service to it “during the holidays”.

I am fortunate that the people in my life are beautiful and caring all year long. For this I am grateful. 

A lesson I am reminded of today ---- If something is on sale and you do not have the money to buy it, you are not “saving money” by buying it. 

The feelings are here, tears are coming and going. There is nothing like a good emotional douche. The healing process continues..... 

My continued thanks for all the support.

Well, it’s Boxing Day. Time to keep breathing in and out; to not make any bad decisions; to do the little things I can do to take care of myself. It is difficult to not to be able to take care of yourself and to know this will not change for a while yet. It is depressing. To have nothing to offer other than depressing circumstances and having to still ask for assistance does not feel good. My self-esteem and confidence are getting beaten down and it is becoming more difficult to accept this situation with grace. I have the thought of running away from myself. 

I am trying to maintain perspective but this has really been a difficult mountain to climb. The aloneness of this part of my journey continues to be overwhelming at times. So - I will continue to breath in and out, put one foot in front of the other and look forward to the time where I can wipe my behind, bathe myself and go to the store, doctor appointments, etc without assistance. My hope is I know these things will happen but getting from here to there is one hell of a journey. 

Well this is the news of the day. Happy BoxingDay.

This was a day. Good day and then a very long long long day. And that is all I will say today. My continued gratitude to all.

A more will be revealed week coming up. Meet with medical and radiation oncology. On the learning curve with the urostomy and the changes it is and will have on my life. I was reminded today that I am not alone on this journey and this journey is far from over. A change of perspective was welcome. 

On another note I will be relieved when this year is over because for me it has really sucked. Come on 2015!

Reality check day for me. I had an appointment with my medical oncologist today. One lesson for today is to always take someone with you who will ask the questions you refuse or forget to ask. Great doctor and our conversation grounded me as to the timeline for my recovery and ongoing treatment. More will be revealed as I meet with my radiation oncologist tomorrow. My recovery will be more prolonged but given what I am dealing with I am doing well. This will take time (months) and I need to chill out and enjoy this journey as much as I can.

I will have time to not just smell the roses but plant a garden, watch it grow, smell those roses and sell dozens as my journey continues. 

Lesson two for today is to laugh when and where ever possible. Without humor, what do we have. So as I continue to manipulate my plastic penis I wish everyone a good day. 

Indeed, this has proven to be a “more will be revealed” day. Had my appt with radiation oncology. I am very impressed with the doctor(s) and staff. Good information as to my disease and the future treatments necessary. I will have another bone scan and MRI and it looks like a seven week course of radiation beginning in a few weeks once I heal more from the surgery. I will share that my last PSA test before surgery was 142. It has now dropped to something much less ridiculous. This will be a longer recovery than I planned on. I was planning 6-8 weeks and I would be good to go. Feel free to laugh all you need to (my friends are). The recovery time will indeed be measured in months. 

Emotionally still wrapping my brain around this but feel very positive about the high quality of care I am being given. With the realization of the longer recovery time involved comes the fear and anxiety over the financial implications of this. I am not ready to consider the possible outcomes at this time. Way to scary. But we are not there yet so I am focussing on what I need to do now to recover. Eat well, sleep well and do the emotional and spiritual work. 

On a lighter note, having ones testicles removed (no or very very little testosterone) has freed up a lot of time. Think of the word eunuch. So with this extra time I now have I am trying to come up with a project I can work on that will benefit all mankind. Well, at least a few of us. Suggestions are welcome.  

This will be my project for the new year as I will have ample time to work on it. Happy New Year to all and come on 2015!

I had a good day today. I am finding out I am stronger than I thought and some fear is indeed False Evidence Appearing Real. I was reminded that I am indeed the comeback kid - thanks Abby. 

Just a personal note to 2014. You sucked. 

There were some great moments with friends; finding the doctor who has given me another chance at life; the doctors and staff at Emory who have been brilliant; the friends who have taken such great care of me as this became necessary and the deepening of these relationships which are a great source of strength for me. 

What a roller coaster of late. At times I have felt like the king of the world and at others like I reached the end of the world. When in doubt press forward and see what the doctors say later. I can now dress myself enough to go out in public so I also drove myself to get gas and to the store. My first time driving since the surgery. A safe short trip. I was reminded that our native idiots are out there driving and my hope is the visitors in town hurry and go back to where they came from. 

The trip also let me know there is still the need for more recovery. Self-transportation is something I need to implement ASAP as my doctor appointments are going to be “numerous” over the coming weeks and months. I do not want to have to rely on others for these. I know folks would be there but, ..... time to take care of me as much as possible. There are many other issues too, but all things in time. Slow and steady wins the race.

My continued thanks to all those who have carried me on this journey. My love to you all.

On a more serious note, dealing with ones potential demise is something I never took action to do until my possible death became a reality.  Cancer has made me prepare for my demise mentally, spiritually, emotionally and financially. Before my diagnosis I knew I needed a will, power of attorney and a health directive but all of these were on my “get around to it” list. I did  lot of superficial talking about these things but took no action. 

I have now had to get my legal and financial house in order which has caused me to really reflect on my life and my relationships with family and friends. It is giving me the chance to say goodbye and to look at somethings I would like to do before I go. I am grateful for the efforts made to treat my disease as I now have a shot at being here on earth longer. Abby recently  reminded me that I am the comeback kid. Twenty years ago I was partially paralyzed, had several major surgeries and was told by the doctors I would be in a wheelchair within 5-7 years. Well that did not happen. And there have been other physical and emotional challenges I have survived. None of these challenges did I face alone. There were always people willing to walk with me, if I would let them. 

This challenge, while more intense, is once again providing me an opportunity to become a better human being and to allow others into my life. By doing so  I am again finding out I am not alone. For this I am grateful and hope that my experiences can in some way be of assistance to others.

A quiet day. Not much to say, but much to feel. A day of breathing in and out, putting one foot in front of the other and doing my best to be fully present here now. My best to all who are being challenged. As I am reminded again ... I do not know what will happen. Time to let the “story” unfold as it will.

Radiation continues. They were not lying when they said there might be some “bowel” issues and “slight” fatigue. Once again, thank the Lord for imodium. 

I will continue to put my “new normal” life together. I was able to get out this weekend and see parts of Atlanta I have not seen since mid-November. If you blink in this town you might miss a building being torn down and a new building having been built. My thanks (you know who you are) for being taken out for some really really good food and, as always, a great mental flossing. It was good, for the most part, to be  reminded that the rest of the world spins on, the trees are still there and people are still being people. 

A special thank you to those who continue to provide me with much needed mental floss. The amount of “residue” in my mind which needs to be cleaned out still amazes me. Denial is not just a river in Egypt.

Under the heading ... “sometimes it be that way”......

Time for some mental floss. The past couple of days I have felt that I should write something nice. You know, rainbows and puppies and mom and apple pie and, well, because no one wants to read about the dark thoughts/times. Well, sometimes there are no rainbows etc. Sometimes it gets pretty damn stormy, cold as &^%#$^ and lonely as hell. The reality of my life, at this moment in time, I am reminded of at 8:45 am Monday thru Friday. An almost daily reminder of my illness. The side-effects of the treatment also help me never to forget that all is not well with me. 

These are the times when just getting out of bed is a major accomplishment. I am attempting, and will continue to do so, to create some type of life where I feel like a participant rather than an observer. As much as I would like to be “out and about” I am surrendering to the reality that the majority of my activities will have to be planned for. I was already disabled before the cancer showed up and had to pre-plan to be “out and about”. It is extremely frustrating having to accept even more limitations and be concerned that other people may not understand because, as someone said, “you don’t look sick”. Well, in my case looks are deceiving. I am grateful that I am as healthy as I am and do not “look” like a cast member of the walking dead. 

I guess this comes under the heading of just what is a cancer patient/disabled person supposed to look like?. What am I supposed to be feeling? I do not know. I know what I look like and I know what I feel (if I really want to go there). And as I said earlier, it gets pretty damn stormy, cold as %()*&_*  and lonely as hell. It is terrifying to confront these feelings and the reality of my situation. But, I must, or else be consumed by them. Time for me to slow my mind down and realize that I am going to be able to do what I can ... and that is that. I hope this may help someone somewhere. Writing this is helping me and that is that.

I am trying to live life to the fullest. It is a little difficult when I need to be 3 seconds from a working toilet at the oddest of times. As I am reminded, (and real thank you to those reminding me) this is a temporary situation. This will end and life will go on. I do hope the imodium continues to be enough. Other than that and some fatigue, life can be brilliant. 

It was brilliant when the Spurs pulled another “rabbit out of a hat” on Sunday morning when they leveled out with West Ham in the last seconds of the game. I mention this not just because I am a Spurs fan but because it was a reminder to me that you never know what is going to happen. Time to hold on, do the next right thing, not make any bad decisions, not write the ending of the (or my) story because you never, ever ever, know what is really going to happen. 

Time to go be productive and do something that needs to be done or maybe just do something that will bring a little joy into both mine and others lives.

Thought for the day. Living waiting to die is no way to live. Time to go live the life I have. 

These are the times that are trying my soul. Day by day, hour by hour, minute by minute. Just doing the next right thing and going to lay on the slab in the morning. Not much else to say at this time. My life goes on. 

I’m back! Still on the slab every morning Monday thru Friday. My thanks for the “fireside chats” and other “mental floss” conversations over the past weeks. Sometimes this gets real old. But on a positive note I am looking forward to the end of the month. I am also doing my best to get out and about. I do pay close attention to where bathrooms are and between imodium and depends things are looking up. Still amazed at just how much “recovery” I am needing. I am grateful to be able to laugh as well as cry. 

My mantras for the day are “slow and steady wins the race” and “don’t pole vault over mouse turds”. Above all today I am grateful for the gift of perspective.  

Back on the slab this Monday morning. My word for the day is perseverance. You know, the time you “continue in a course of action even in the face of difficulty or with little or no prospect of success” …. because the alternative is not an option for this individual. Besides, I might just miss something that will make me laugh (or cry), like the Georgia Assembly currently in session. That’s all folks!

      New this week … I am remarked, retargeted and receiving increased radiation as I come to the end of my treatments in a couple of weeks. I do know now that my bowels can indeed tell the difference. My thoughts and prayers are with my family. How do I feel? Sad. 

     At times like this I wish I had a magic wand and/or could say/do something profound that would lessen the pain in the world. 

What to say. I am grateful for those who are walking with me on this journey. I am coming to the end of the radiation treatments and ill find out in a few weeks what will happen next. The nearer this time comes the more apprehensive I am becoming. Time for some perseverance… and time not to write the end of the story for I know not the end. It just might be a new beginning. Much love to you all.

A time when it is best to say nothing due to the graphic nature of these incidents. Nasty. Life goes on. Last day of radiation Monday and then it is on to the thyroidectomy! A “normal” life awaits me. And after watching Tottenham play this past Sunday I was reminded again I do not know what the hell will happen.

ONE more radiation treatment and on to the thyroidectomy! I will have a couple of weeks to recover my stamina. Life does go on and I wish the best to all family and friends. 

This is a time of new beginnings. 

There is a tradition at the Winship cancer center whereas when a patient completes a course of chemo or radiation, said patient is encouraged to ring (what I call) the memory bell. Well this morning was my turn to ring that bell. 

For whom doth the bell ring? This morning it rang for me. 

I am now going share some things I have learned over the past couple of months….

1. You cannot start your car with your house key.

2. You cannot open the front door of your house with your car key.

3. While the microwave and refrigerator are two very different things, my ability to tell the difference at times did not exist. Kind of difficult microwave a muffin in the refrigerator and to expect popsicles to stay frozen in the microwave.

4. Not being able to tell when I had to go has gotten real inconvenient. I am looking forward to the time, hopefully in a couple of weeks, when once again I will be able to not crap my pants at the most inopportune of times … if at all. I do believe in “depends” now.

5. I hope to be able to watch a movie and/or a soccer game without nodding out and will no longer take for granted my ability to “pay attention” during the course of said event(s).

It is now time to go see the doctor for the thyroidectomy in a couple of weeks. Time enough to let my body recover and saddle up for the next leg of my cancer journey.

In closing this chapter of my journey I would like to say thank you to all who have walked with me. Your love and support have enabled me to endure and to look forward with positive expectations to the future.

Just a note to check in. I needed to take a break from “being sick”. But news of note … I see the doctor on Thursday and hopefully will have a timeline on the thyroidectomy. And the follow up scans/blood work will be done in a few weeks which will determine the next steps of treatment.

My continued gratitude to all who are sharing this journey with me.

An update note - My thyroidectomy is set for Monday, 4/27. Things look good and hopefully this is not cancer. I should be in and out in a couple of days. 

On another note, it is amazing to me that in my quest to “not be sick” and to not hear or see anything cancer related ………. the longest I could go was the few hours in a row when I was gaming and when I read and go to bed. Trying to not to be reminded of this illness is damn near impossible. And yes, I am going to watch the cancer doc on PBS. 

Mood swings, but I finally have some degree of control over my bowels. Happy Happy Joy Joy

Things I can do again….

I was finally able to walk in the park, by myself. I have also started mall walking again… by myself. 

I can bend over and have finally been able to wear different shoes and have moved on to something other than “hospital” fashion. 

I thought I was on a more normal bathroom schedule … spoke too soon about this one…. but this has improved a lot.  

I have experienced that “bump up” in energy and am beginning to look forward to the day as opposed to “waiting for the day to end” at 9am. 

I am grateful for the life I have and for all those who are a part of it. You all are the reason I am still here. And I must say this. Cancer sucks.

Just a note to check in. A reality note for me that this journey is not over yet. I do hope my thyroidectomy on Monday, 3/27, will be the last for the foreseeable future. 

I got more information this morning at my pre-op appt. My thyroid has a lot of “thingys” going on in it. I will probably be staying overnight for this procedure. And I must say this again. Cancer sucks. 

Your ongoing support is much appreciated …. and very much needed.

Breaking news. I went to my oncologist yesterday, just got off the phone with the nurse about my test results, and the test regarding the prostate cancer came back negative.  My PSA is “undetectable”. 

One down and one to go … this coming Monday. I want so much to jump up and down and say I kicked cancers ass…but cannot do so yet. I hope my thyroidectomy on Monday will go smoothly and they will get out everything they need to get out and that will be that. 

It is beginning to appear that I just might be here a little while longer. I must now, more than ever, ask everyone to share my story and donate whatever you can so I can stay in my home. I have bills to pay and a life to live!

I am going to enjoy this now and go for a walk in the park. 

I was due to go in hospital for thyroidectomy today but I received a call early this am and due to a doctor emergency my surgery was postponed until this Friday. 

So the waiting continues and the final answer will not be known until then. My thanks to all. Life goes on.

The waiting is almost over. I had my thyroidectomy yesterday and the evidence showed it was indeed time to get that sucker out of there. The left side was “out of control” and when they took it out my trachea slide back into place. I still have the right side at this time .. so no pills needed. Yippee! Just waiting on the pathology report but the out look is very positive. 

I am very grateful for all who have walked with me and especially to the folks who took me to and staid at the hospital as this operation took place. Much LOVE to you. 

My problem now is to follow the doctors orders and shut up and let my throat heal so I will have the freedom to talk freely. I am sure some of you can’t wait for this to happen (smiley face). 

My journey with cancer has been the most profound experience of my life so far. My perception of who I am, of other human beings, as well as everything else on this planet has been altered in a most surprisingly positive way. I will write more on this at a later date. 

For now, I am saying thank you to all who have shared my journeys far. And now that it looks like I will be here awhile longer. 

Once again I find myself subject to reality. Where I was expecting to up and about by the end of the week…I am reminded by a good friend, and reality, that it might be closer to two weeks before I am able to drive as I need to be able to turn my head and be off the pain meds. I am mostly mobile but do need to be accompanied by a friend when I “go for a walk”. At least I should have the results of the pathology report by the end of this week. 

And again I must ask for more help. I wonder if there is a message here somewhere…….

Just an update. I should have the pathology report results by Tuesday, at the latest. I am up, off the pain meds, and mostly mobile. More questions for me as to what do I do now as regards finances because wishing in one hand and crapping in the other is not going to cut it. So please know the financial need is still very much here. I do want to stay in my home of the past 15 years. My continued thanks to those who have and are walking with me. 

The saga continues…. 

I saw the doctor this morning who informed me that while they were very happy they got the left side of my thyroid out (there was some cancer there) and I am recovering well form that surgery there are “problems” with the right side of my thyroid which has “nodules” and areas of concern in it. Of course these nodules are thyroid cancer and so another surgery will be scheduled when I see the doctor on the 28th of this month. Hopefully this crap will not show up somewhere else.

While I would like to say something clever and irrelevant…. at this time I am just tired and over this crap. Oh, and did I say that cancer sucks.  

As I wait, once again, for more information about my current cancer I must share how grateful I am to those who have been willing to share their cancer journeys with me. 

Last fall I received a terminal diagnosis and after surgery and radiation, I am now in remission (from that cancer) and do not have to see that doctor until this coming October. Meanwhile another cancer has shown up and I am again waiting. My mental state has been on a roller coaster ride. After trying to either be “cancer free” - i.e.; the cancer is gone and I can now make decisions regarding my future without “death” hanging over me like a bad fart, or being “cancer sick” and having “death” hang over me like a bad fart, I am learning to walk the middle road. 

And a big shout out to those who have and are sharing with me their experience, strength and hope in living with cancer. Also a shout out to my friend who has given me the gift of therapy with my old therapist. There is nothing like a good mental flossing.

I am now beginning to wrap my mind around the idea of just living with cancer. Knowing there will be times when it is active and disruptive to my life, while at other times it will be silent and almost invisible in my life. This is my middle road. 

While I do see the doctor on the 28th I also know that this will be the start of more scans, another surgery/recovery and possible followup radiation/chemo treatment.

Until then I am giving myself a vacation. I plan to exercise, walk, eat healthy and prepare myself as best I can for the next stage of my journey with cancer. I have also promised to not make any “big” decisions at this time. Those who know … know what I am referring to.

I am tired and there have been some very dark times this past week. I am holding on to the fact I do not know how this story ends. My thanks to all who have supported me and this effort. 

Just an FYI to all. I now see the doctor on the Tuesday, the 26th. I will let all know what is going on and my continued thanks to all.

Breaking news: No big cancer news. I will have a biopsy of my thyroid (the half that was not removed) in a few weeks. All else is OK for now. I have a “normal” lumpy bumpy thyroid and due to my family history the biopsy will be done.

Time to move on and live like there will be a tomorrow. I hear a fruit tart is in my near future. Much love to all.

NOTE: I will have a biopsy on this coming Monday. Hopefully this will be a non-event and I will be able to move on with my life. I am tired. It’s been a long haul. 

My continued gratitude to those who have and are walking with me on this journey.

Update: Biopsy done this AM. Results in a few days and I will let folks know what comes next. Another thank you to those who are walking with me.

Just an update. I am waiting for a phone call from the Dr’s office for my biopsy results. I do have an appointment on the morning of Thursday, the 25th. I will let everyone know the news ASAP. 

I am tired. Doing my best to live well. My continued thanks to all those walking with me. 

Finally heard from the doctor’s office regarding my latest biopsy. And … wait for it … the result —NEGATIVE!!! NOTE: 5 samples taken - 4 were inconclusive and one negative.

What a journey this has been to this point. I am still processing what this really means for me, so I am asking  everyone to be gentle with me. I want so much to say something clever and/or profound. What I can say now is how grateful I am for all who have shared this journey with me. I am (the understatement of the millennium)  a very fortunate human being. There are still many upcoming doctor appointments, etc. But right now it’s time to do a little celebrating! 

Time to get back to living to live. And of course trying (LOL) to pay all the bills.

I am so relieved to have received this latest test result. Twelve months ago I was diagnosed with prostate cancer. As the weeks went by I was told that this was in all probability a terminal disease. And after finally getting a second opinion, I was told that I did have cancer and because of the type and how it had spread, the result would be my death. The only question being how much longer would I live. 

The doctor I saw said there was a very small chance that with radical surgery and follow-up treatment I might yet live. I am grateful to my friends and the powers that be for walking with me. There was no way I would have been able to do this alone. And a big HUG to the doctor who proposed and performed this radical operation. You are brilliant! 

Along the way a scan revealed I also had thyroid cancer which would be dealt with after the “big” cancer was taken care of. Now that cancer has been dealt with and tests, at this point, indicate I am “cancer free”. 

I will still be followed every couple of months for the rest of my life and so I will live with this new reality. I plan to really live. I do not know how much time there might be, but whatever time there is I want to LIVE it.

     Part of this reality is now I do have to deal with the financial reality of survival. In other words I have to be responsible and pay my bills and cannot justify saying “f^*k it” and count on dying to not worry about keeping my home, let alone paying the bills … which keep on coming. 

So once again I must ask all to get the word out and any help is needed and greatly appreciated. I can say this. Cancer is expensive as well as being damn inconvenient. 

I had my appointment with the doctor this morning to discuss my latest biopsy results. The results were negative and I am now, for the first time in over a year, only going to be seeing doctors for follow-up care.  How wonderful this is…. and how different life now appears. There are challenges yet to be met and now I must meet them. I will do so with a smile on my face, a song in my heart and my cane in my hand. 

Please note that this “reality” is still sinking in. My doctors at Emory have been brilliant as I am no longer “terminal” but alive and well. Well… as well as I can be. 

I am…. in remission, “cancer free”, have at least few more years left, and am grateful these are the facts for now. 

I have lived the past year of my life with my focus being on the next test or doctors visit. Now all of those things that I had put on the back burner or taken off the stove completely are all cooking merrily away on my stovetop. Holy sheep-dip batman! What do I do now? 

I am putting one foot in front of the other, breathing in and out and trying my best to do the next “right” thing. At times I am overwhelmed and at times full of joy and peace. In other words…. back to normal, well now in my new normal. I am assured by friends that this too will evolve and I do not doubt this for a minute.

     A cold reality in all of this are the bills that are showing up and my resultant continued real need for financial assistance. Cancer is rather expensive.

This is the beginning of my new journey. A journey towards life. So I am asking everyone, once again, to please take part by sharing my story, giving any donation you can, praying, sending positive energy or by providing whatever “positiveness" you can into the world. 

And to bring a new beginning to my story .... 7/19/15

RIK’S CANCER RECOVERY & SAVE THE HOME FUND

MY STORY

In August of 2014, I was diagnosed with terminal metastatic prostate cancer.  Upon seeking a second opinion, it was discovered that the cancer had spread much further than was originally diagnosed and that I also had an unrelated thyroid cancer.  Resultantly, I underwent the following operations and treatment:

• November 2014:  The initial operation removed my prostate, bladder, 43 lymph nodes, and remaining testicle.  This procedure resulted in my receiving a urostomy and having to recover at home for the next 3 months.

• February 2015:  February marked the beginning of several weeks of daily (M-F) radiation treatments, which lasted through March.  

• May 2015:  Post-radiation, I underwent a thyroidectomy, which resulted in the removal of more than 65% of my thyroid.

• June 2015:  I underwent a biopsy of my remaining thyroid, which produced 5 samples.  4 of the samples were inconclusive for cancer and 1 sample was negative.  Later that month it was determined by my physicians that my cancer was in remission.  

HOW YOU CAN HELP

While I’m lucky and grateful to be alive, my struggle to survive cancer has come at a considerable financial cost and I need your help.  I’m a 62-year-old disabled/retired social worker living on a fixed income and was unprepared to absorb the breadth and depth of medical costs associated with the procedures, treatments, and ongoing examinations to ensure I remain in remission.   

Your kind and deeply appreciated donation(s) can help me remain in my home, pay down medical bills, and reduce stress.

Thank you so much!

  

Updates of my journey with cancer will continue...