To take a break or Not is the Question

My recent post on Facebook where I shared about "considering taking matters into my own hands" has generated a great deal of well-intentioned advice and supportive commentary. Believe me when I tell you I am fully aware of the seriousness and severity of such a decision. The "what it's" are all making themselves known and I am trying to diligently weigh them in the light of the consequences I will face. Everything under the sun has consequences. This forty year old man here is fully aware of that. And how I wish now I had made right choices along the way so as not to have to suffer the devastating consequences of the present. More so, how I wish I could spare people around me the consequences they are undoubtedly building up for themselves by their poor choices. Just as I refused to listen way back then I know I will not be heard today no matter how hard I try.

In getting back to the decision weighing heavily on me, I have spent the last few days pondering what I should do regarding the matter of stopping my chemo. sessions. I guess it all weighs heavily on what my Oncologist will tell me this coming Wednesday when I go for what could be my last chemo. session. I plan on letting her know that I feel my body needs a break. Not indefinitely mind you but long enough for my body to have a chance to heal up for a bit. From the responses I have been getting lately I guess I must have made it sound as if I was saying I would never go back to it. That wasn't what I meant. I just need a break...some time off...a siesta in the middle of my toxic induced days and nights.

It may be too late for my poor nerve endings. Hoping and praying the neuropathy in my feet and hands is not permanent damage. Doctors can't say definitively how long this pain and discomfort will last. Everyone is different and the side effects not only vary but the duration and intensity that each survivor has to endure is completely unpredictable. I'm trying to limit the amount of narcotic painkillers that I become dependent on but I'm afraid I am going to have to speak with my Pain Management Specialist (PMS) Dr. Glare and request to maybe go the next level up in pain management. There are moments and days I wish to my sweet savior I did not have to walk or move my feet. The pain has become so bad I have completely stopped wearing any kind of closed footwear and opted for the feet friendlier open-heeled Crocs. Oh, and did you know there exist"diabetic" socks that have enormous stretchability and softness which gently cover my aching feet? There is a whole world I knew nothing about that suddenly has opened up to me. All thanks to this stabbing persistent pain which has become my uninvited guest.

I say none of this to garner sympathy or as they say in my culture "Ay, Bendito" but to make it plain to you and anyone who cares to know...I need a break! A few weeks of unmolested recovery and uninterrupted rest. Better yet, give me the month of April to close my eyes and rest. Forty days in the desert where I may take off my shoes and allow my feet to walk on holy ground.

Just pray for me and watch from a distance. Let my feet lie on a pillow and slowly mend. That is all. Come May I'll be right back in the torture chamber modern civilization calls the Treatment Suite offering my veins and major arteries to receiving the lethal dose of consequences brought upon by the once reckless and promiscuous actions of a misguided youth who never once stopped to consider how bad things could or would get.

Facebook Status Update: 3/19/11

Every day I awake with the blessed hope that "today will be the day of my eagerly anticipated physical healing", but as the sun begins to set I once again have to comfort myself with the thought that tomorrow will be the day because I know I have not been forgotten or forsaken. I just need to pray a little harder I guess and not give up hope! Nothing good or worthwhile comes easily.

Update 3/17 @8:57pm

Facebook Status Update:    Keep me in prayer. Planning on taking matters into my own hands and discontinuing Chemotherapy for awhile. This toxin in my body is slowly but surely destroying and damaging the nerve endings in my hands and feet, as well as wreaking havoc in other parts of my body. I need a break...a time to think and regroup.

Crooked Notes by Idilio Rivera is licensed under a Creative Commons Attribution-No Derivative Works 3.0 United States License.

My Three Amigos in the Valley of Cancer

Slowly adjusting to having a Home Attendant...very slow. Not sure if this will be the best thing for me in the long run. While I enjoy having another human being I can talk to and someone to assist me with my day-to-day needs I'm not so sure or convinced I may need the assistance.  I guess I'm coming with the perspective of someone who every day continues to hope and pray for his complete healing and physical restoration, Miss Amanda may be out of work any day now. 


Amanda sat in my room for the bulk of the six hours she was assigned to be with me and in that time as we conversed and got to know each other I found out Amanda hails from Mexico and has been in the United States for the last sixteen years. Her English is very limited. I had requested a Bilingual attendant in the hope of enjoying the daily company of another person of Hispanic ethnicity. I also wanted my parents to be comfortable and at ease during their visits (especially my Dad who after almost half a century in this country has yet to feel the need or urgency to speak English. I guess at this rate he never will). I really wasn't looking forward to speaking mostly Spanish but luckily for me it is not an issue of great concern. I can hold my own in either tongue. "Espanol" it will be I guess. 


The only issue that I am starting to realize is that Amanda offered to cook for me if need be but since she hails from South of the Border and it just so happens to be one of my least favorite cuisines, I won't be taking her up on her offer. Unless she can cook American or non-spicy dishes I will not be requesting her to cook any meals for me. I did send her to the corner bakery for freshly baked bread and I will definitely appreciate her running food errands for me since at the present moment my ability to get around and fetch my own things is nowhere near the flexibility it once was, I will definitely count on her for such favors. I am also greatly relieved that I have someone who can walk downstairs and answer the door (another source of inconvenience for me) and fetch me a glass of water whenever I am in need of it. Aside from that, there really isn't much else I require assistance or want help with. I refuse to let anyone bathe me. I can feed myself and as for changing and/or cleaning my colostomy bag, I have learned to do so on my own.  As for help around the apartment I discovered today that Home Attendants are not required or expected to do so. It all depends on each individual's personalities when it comes to such tasks. By the look of things I don't think I'll be getting any help from Amanda in this department. Good thing I am fiercely independent and for the most part keep everything tidy and in its place. This latter part will no doubt cause my parents to complain and criticize the poor woman. My mother thinks Home Attendants are put here on earth to be pseudo-maids and servants. She will undoubtedly freak when she finds out Amanda prefers to sit nearby and keep me company rather than grab a mop or broom. The same goes for my Dad. Case in point, I was assigned a guy this past weekend when my parents were here for a visit. After a few hours of immobility on the part of the attendant, my dad came into the room and asked me in a loud voice: "Is he your friend or your worker because I haven't seen him do a damn thing since he walked through the door!" How embarrassing. I immediately apologized on behalf of my father. Luckily the young man was well aware of his duties and made it clear that he was not hired to clean or provide maid service. Home attendants only provide light maintenance work (i.e. washing any utensils used by the client during their particular shift) and assisting clients with their medical and physical needs. Needless to say, my father refused to accept ths and insisted they do more than just keep clients company. 

Well, we shall see how things go.  Tomorrow will be a full house at the Chemotherapy appointment. Luis, my good friend and spiritual brother will be here to pick me and transport me to and from medical appointment. He also remains with me for the entire time I am at the doctor's office. The same goes for my beloved Heather whom I affectionately have nicknamed my "Chemo. wife" since she usually shows up to my appointments and keeps me company from beginning to end. Now add my Home Attendant who is assigned to me for six hours a day and viola I will have a full entourage with me as I go about the business of receiving chemotherapy, getting blood work and vitals done, as well as meeting with my Doctor for my bi-weekly follow-up and check-up. Sadly I have a feeling I may have to say farewell to at least one or two individuals. 

As much as I love the company, the chemo. cubicle is much too small for four of us (not counting the nursing staff) to comfortably fit in.  Truth be known, as my strength increases I have been looking forward to attending my appointments increasingly more independently and on my own. As soon as my Access-a-Ride privileges are in place I was planning on going solo since I am eager to get back to more of a sense of the independence I lost and was taken from me when my health took a turn for the worst. Once I am able to reserve and fully use the transportation services offered by Access-a-Ride I intend to only utilize Luis during occasions when I am required an escort in order to leave the premises (usually required after procedures requiring the use of sedatives and anastesia). 


Well, I guess that is all i want to write for now. Need to prepare for tomorrow. Thanks for stopping by and feel free to leave your encouraging comments. I am so blessed to be alone in this world yet so well loved and always in the best of company. I am a lucky, lucky man, Cancer or no Cancer!
Crooked Notes by Idilio Rivera is licensed under a Creative Commons Attribution-No Derivative Works 3.0 United States License.

New and improved I desire to Be!

Still feeling horrible about having to delete people from my Facebook page. It is with that in mind that I want to make every effort to keep those who follow me on my blog page just as informed as those on Facebook. Yes, new and improved is my goal.
The challenge lies in the fact that Chemotherapy has compromised and caused nerve damage. Using my hands is a painful ordeal at times. Who would have thought the simple act of typing would be so painful? Sucks. But where there is a will there is a way and it should be known that as much as people appreciate my updates on Facebook, I in turn appreciate the wave of encouragement which comes from the responses. I find encouragement and solace in and through the well-wishes of others. I have been blessed with wonderful friends and supporters. I am deeply encouraged to run this race with perseverance.
I purchased a flip video cam in the hope of adding this new element to keeping everyone updated and in the know of things. I also want to keep a video library of how my health progresses. Let's hope it pans out that way.
Well, tomorrow is another day and I wonder who will be arriving to serve as my home attendant. It is a bit nerve-wracking because who knows who I will end up with. Their is certain level of risk involved whenever you allow and welcome a perfect stranger into your home. I just hope whomever it may be that they will be found to be trustworthy, hard working and reliable. I can only hope and pray so. Yet another opportunity to continue to trust and depend on God to take care and protect you. He shall. He has never let me down. This I can be assured of.
May He continue to give me strength to persevere and endure. A bit of self-control and discipline will also serve me well in keeping this blog up and current. Deep down I hope to leave a vivid testament of God's abiding faithfulness and a visible record of my personal growth and maturity in the face of difficulties and trials. It is ever important to continually encourage oneself and remain positive in all circumstances.

In the Meantime...

As I lay here and wait for healing to manifest itself from the countless prayers being offered up daily on my behalf, I wrestle with this demon called depression. As much as I hate to admit it and give voice to it, I am one seriously depressed brother. It is killing me to have to accept I am powerless to move this process along. No matter how much I pray and others pray for me, I cannot move things along any further or any faster. Healing will come when healing comes. I have not the secret formula or gimmick to speed up this most painful and excruciatingly agonizing experience.
As much as I want to go at this alone like many other experiences dominated by the single and unmarried life, this dreaded tumor keeps me dependent on others, who ultimately may or may not be there for me when it is needed most. As grateful as I am for the many volunteers who have stepped forward and stepped into the role of caretaker and provider, there are times I still find myself alone and desperately seeking for someone, anyone, to step in and assist me. Truth be known, I cannot do anything alone or independently of others when it pertains to this dreaded cancer. I no longer can get around without the physical assistance of another being. My car sits idle in a garage while I have to depend on people to chauffeur me back and forth to and from my medical appointments. I have to depend on what I affectionately have termed "Chemo wives" to escort me to my appointments. I attempted to go at it alone once but in all reality just wasn't able to. Depressing.
I require another human being to sit with me and assist with basic needs. Getting around is slow and only adds to the physical pain I am presently experiencing. What a welcomed sight and relief it is to me when someone else comes alongside me and provides me with much needed assistance, Yet more often than not, I find myself having to go at it solo. I've had my share of lonely days at home. Being alone when your mobility is limited is downright depressing! When getting out of bed and walking thirty paces to retrieve a glass of water turns into a triathlon or walking down a flight of stairs to open a door turns into what I can only equate with climbing Mt. St. Helens, then you will begin to understand why having another human being with you is beyond helpful but necessary, you will begin to see why two is better than one.
My poor parents, who have been keeping me company since this whole ordeal began, have begun to lose steam. At their age and living out-of-state, all the back and forth seems to have worn them out to the point that they now come up with excuses for not being able to stick around for more than a few days at a time (a far cry from the three week stints they used to commit to). With that said, they'll be heading back home bright and early Saturday morning, leaving me to fend for myself once again. I honestly wish I could pack up and leave with them.
No matter how much others around me may attempt to fill the void at the end of the day, I am left alone to do my best.
I honestly don't want to be depressed about this. There have been worse situations I have been in and seen myself out of. This will be, no doubt, yet another experience to live and tell about. Depression may seep in and bring me down but it will not overcome me! This I do promise to myself. I will find creative ways to fight off these feelings and inconveniences. Spending time in Massachusetts at my parents home will not be possible right now since I have too many medical appointments to tend to here at home. I will simply have to buckle down and turn the "blahs" into an arsenal of bountiful blessings. I will overcome just like I was designed to do. Not in my own strength, of course, but with the might of the Holy Spirit. And in the meantime, never, ever give up hope that others will come to my rescue and ultimately I will not go through any part of this journey alone.
He did not bring me out this far to leave me, nor forsake me, but to display His glory and splendor for all to see and believe.

Just in Time because He is never Late

I have been battling cancer since October 2008. Having withstood and endured both the ravages of chemotherapy and radiation, I received the "all clear" sign sometime in June '09. Unfortunately for me, the pain of cancer had only subsided somewhat long enough to give me and my medical caretakers the false impression that I was well on the road to full recovery. Sadly, the tumor not only re-emerged but it had become more aggressive and had metastasized to other vital organs, which translated into greater pain and the added inconvenience of a catheter and colostomy which may or may not be permanent.

I grew up hearing a saying In Spanish..."Dios aprieta, pero no ahoga"... "God tightens, but He never drowns you". Basically, it was ingrained in me that no matter how bad things get, there is always a way out. This has been my attitude in dealing with this dreaded cancer. Countless tears have been shed and not a day goes by that I do not hope and pray will be the end of my fiery trial.

While I am tempted to scream at the top of my lungs: "I'm drowning, oh God!!!" I quickly realize what a waste of time this would be since I'm dealing with a God who thankfully does not see things from my limited point of view. He is all about stretching you and tearing you down in order to build you back up again while everything in me wants to run and hide and place the blame elsewhere. He sees the end result. He guarantees complete victory...no matter what.

It would be a damn shame to be so close to obtaining gold only to have thrown the towel in prematurely. This thought alone keeps me going, keeps me enduring, holding on. That and the sincere belief that although this body may be falling apart and in need of constant pain relief, in the end, I will live to see the goodness of the Lord in the land of the living.

I am hanging on out of pure conviction that God is never late, never early, but ALWAYS on time. Call me a fool but I'm putting all my eggs in one basket and counting them too even before they hatch (the two things I have always been advised against) simply because I believe that God will come to my rescue and deliver me. Just in time because He is never late.
Never late.
Never.