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...