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Thursday, October 4, 2012

Facebook by the Hospital Bed


I'm not a fan of Facebook. It seems an overwhelming blob of fodder constantly raining down on me. The first few days in the hospital were much the same. I have always had the ability to come out of anesthesia well and seem alert. This is good for me, because I like to be aware of what is going on around me. The down side of that is that it makes me look good. I don't mean pretty. I mean it makes me look as if nothing has been wrong and I feel the top of the world. When that is added to my effort to appear happy and upbeat, I seem to be much better than I actually am.

I love all the people who came to visit me. I would not have changed anything about how much time and effort they all went through to come all the way to Murfreesboro and visit. That is a two hour commute from my hometown. I appreciate so much that so many people care so much about me. It made me feel good to know that, and helped me to recover faster.

My advice to anyone who is going to have a hospital stay after recovery.
  • Before going into the hospital, appoint someone as your assistant (bouncer, guard, minion, secretary).
  • Let everyone know that visitation will be a scheduled event.
  • Leave time between visits for mental re-energizing.
  • Cut off all visits at a certain time in the evening.
  • Take a calendar or notepad.
  • Be aware that the TV in your room may not pick up all the baseball channels.
  • Don't forget the 'no touch' rule.
Really, most of the people who came to visit all did it on my 2nd and 3rd nights. I understand that it was the only time many of those people could do that, because it was Friday and Saturday. To make that trip to see me required weekend time out of their schedules. The down side of that is that it exhausted me. I want to participate in the visits, but was at the end of my rope by 7pm each night. For two days I had visitors non-stop for the entire day. I needed a few short intervals of alone time during those days and was unable to get it. It also left me with long days without visitors during the week. There were times I wanted people to visit, but there was no one to do so (work, travel, etc.)

So, if possible, get your assistant to contact people who they know will visit. Call those with more time and ask them to visit during the work hours of the week, when most other people cannot. Have them make sure you get a half hour or so without visitors during busy days, between visits. It's a delicate situation to maneuver  but will help in the long run if you can spread those visitors out over your entire hospital stay, so that you have a consistent set of visitors but are not bombarded.

The notepad. I learned this the hard way. I know I became irritable with the note thing, but as time passed I realized what I should have done. The number one plan would have been to take the Franklin Planner and have the assistant mark everything down. That would be easiest. For example if someone came to visit on Thursday at 11am, just put their names down at that time. If something went wrong or an extra medication was asked for, or whatever, could simply be marked down at the proper time and day. Otherwise, number two plan would be to just take a notebook. Train your people beforehand  Make sure they understand what you want. For that matter, know for yourself what you want. I was ready to come home before I realized what I wanted. I wanted a journal of everything that happened. But in the least, get your assistant trained on how you want notes taken.

Realize that your assistant may be a group of people. I was fortunate that someone was with me every day and night. My family and friends took turns being my assistant. It was a great help, made me feel better and helped to keep track of what was going on. In the end I came home with a notebook of information about things the doctor said that were important, names of people who visited (because it's easy to forget while medicated) and any issues I wanted to pursue later.

Plan ahead with the hospital social life. It will make your stay much better.

NOTE: I was just reminded by a great friend of mine about the 'no touch' rule. Your assistant will be vital in reminding visitors to wash their hands, use the hand sanitizer (by the room door, on the wall). Then inform people not to touch you. It's just a best safe practice to keep sterile after surgery.

Monday, October 1, 2012

Recovery

As of October 1st all restrictions have been lifted!

The past 7 weeks since returning home have seemed like a year or two. For the first couple of weeks I was mobile around the house, but not steady on my feet.

Getting back to normal-
This week I have burned my right hand twice and cut my left hand. Getting back to normal is not easy.

Here are some things that really helped during my recovery at home:

  • hiking stick (for getting around the house and yard)
  • grabber (bending over was just not possible for a few weeks)
  • step stool (for getting into bed, it's a high mattress)
  • chair (a good comfy recliner to lounge in)
  • bed with table (for all the things I needed to have handy at my bedside)
  • toilet seat (for a higher seat for not being able to bend over or to a low toilet)
  • shower seat (having to keep surgery area dry and not being steady on my feet)


good things about being served my food at home already porportioned (lots of work for my sister)

bad and good things about reaching milestones (too much too soon; false sense of being better)

Monday, August 27, 2012

Lab Results


I just spoke with my doctor on the phone. She said that the results from the detailed analysis were so low that no further treatment is indicated! I will not need an oncologist or chemo/radiation therapy. She reminded me to keep my appointments with her for frequent lab work and to have a colonoscopy every July. Thank God that, for the moment, I am cancer-free!

Wednesday, August 15, 2012

Post Surgery Followup


Today I went for my post surgery followup with Dr. White, the surgeon who took my cancer away. I had a good report and appear to be recovering well from surgery. It is a long, slow recovery getting back into life again. I am realizing that the end of surgery is not the end of the ordeal.

I also noticed that I keep asking "Am I cancer-free?" I feel I need to be continually reassured about that.  I even follow that question with "So there's no cancer anywhere else in my body?" I wonder how long it will take to stop doing that, if ever. I cannot convey how traumatic it was to be told I have cancer and to feel so close to death.

My greatest concern before surgery was the possibility of dying during surgery. I knew that was so remote that it should not have been a concern. Maybe it was misplaced fear of having cancer or general fear of what I call 'being on the slab'. Before I went to the hospital I went through the house and told my sister what to do with all my stuff if I were to die on the slab.

As I lay on the hospital bed in pre-op various people came in and hooked me up with IVs, gave me medicine and asked questions. They all worked to make me as comfortable as possible, but the anticipation was overwhelming. Suddenly Dr. White came in just before wheeling me into the operating room. She looked at me and asked if I wanted her to pray. I said yes and lay there amazed as she held my hand and prayed to Jesus to guide her hands and heal me. It was like a blanket of comfort covering me from head to toe.

When they got me into the operation room I could see all the pans, tools and lights. I moved over to the table (the slab) and woke up about 4 hours later going down the hallway into my hospital room- with family waiting there for me.

The rest of that evening was in and out of consciousness. It was after 7pm when I came out.

I look forward to writing about the hospital stay and what it was like to become a person again who could walk on his own. Stay with me as I tell my journey from the hospital bed, or maybe better called "Ice Chips from Heaven".

Saturday, August 11, 2012

Home Again!



I am home again!

Yesterday I was discharged from the hospital after an 8 night stay. The doctors, nurses and staff were caring and compassionate people. It was a long, hard road getting over the shock of surgery, and I will write more about that as I feel up to it.

As for now I want to say that I am virtually cancer free! It will take about two weeks for testing to bring results of all the stuff taken from my body. At that time we will know if there is anything still in me, if I need chemo or radiation therapy and how much of a risk I am for redeveloping cancer.

I look forward to sharing the rest of my story of the year I fought cancer. Please stay with me as I continue to recover. I'm very tired and slow to get back to 'normal' over the next 6 weeks. Remember my motto song from Smash Mouth as they utter: I get knocked down, but I get up again. You're never gonna keep me down.

FIGHT ON!

Thursday, August 9, 2012

Ice Chips From Heaven


This is a description of the technical experiences I had in the hospital.

I have a phrase I think of to refer to my hospital stay. I call it "ice chips from Heaven". I'll explain why in a minute.

My surgery lasted about 4 or so hours. For me it was only a second. At one moment in time I'm being put on the slab and being told I'm fixing to go to sleep. A microsecond later I'm rolling down the hall toward my room. For my family it must have seemed a lifetime. No one has talked about it, but I imagine them sitting in a waiting room or lobby, and someone getting up every now and then to walk around, get coffee or just pace. I can't imagine how much torture it must have been for them.

There were lots of people in my room waiting for me after surgery. I can't remember who they all were for the drugs in me. I do remember everybody being surprised at how alert I was and participating in the conversation. I remember my nephew and I singing songs from Rocky Horror Show about "come up to the lab and see what's on the slab". I think I was supposed to be completely out of it, but I have always been very alert and with-it after waking up from anesthesia.

For the first few days in the hospital I was unable to eat or drink anything. Seems like that on day two I was able to eat ice chips. An 8 ounce cup of ice had to be spread out over an 8 hour period. That's like one ice chip every few minutes. But, man, those were the best tasting ice chips I have ever had. A few more days into my stay and I was able to have liquid food. It was yogurt, broth, coffee, tea and water. Even then I had to string this out into a long dining period. The good thing is that since then I appreciate any food I get. I hope I always remember those days I could get nothing, so that I will be thankful for whatever I have.

On the second day here came the physical therapist. They had warned me that I would be getting up and walking around as soon as possible. I think they run into a lot of resistance about that, because people are tired, hurting and full of medication. But I wanted to get up. I knew that it was vital to my recovery, so I was determined to do what they wanted. Getting up out of the bed the first time was miserable. Just rolling around and coming to a seated position on the bed was a huge effort. As I sat there on the edge of the bed I began to sweat and my blood pressure went way up. So after a minute or so I stood up with the help of a walker (and the therapist). Then I had to stand there for a few minutes. I was completely unable to pick up my legs and move them forward. I kept trying though and finally made it to a chair on the other side of my bed, where I sat for the next hour or two. The next day I went down the hall just a little, then to the chair. Each day after that I went a little further down the hall, then to the chair. I believe by the 4th day I left my wing completely and walked all the way to the other side of the hospital. I was determined. Eventually I was able to leave the walker behind and walk upright.

I also had a device by me called an incentive spirometer. Each hour I had to put the tube in my mouth and breath in slowly and deeply. This was to keep my lungs cleared out so as not to get pneumonia. It was also difficult at first, barely able to make the little ball rise. But each day I got better at it. From what I have learned, it is vital to do this exercise. I could tell it helped me to breath better, helping me to recover faster.

During all this I started out with many wires and tubes. I had the catheter. I had the epidural. I had the IV. I had the leggings while in bed. I had the respirator at night. At one point my epidural line got kinked behind me, which led to the most painful few hours I have ever felt. It was like I was dying an agonizing death. After convincing the nursing staff of my suspicions, they found the problem and made it right again. Other than that, all those lines were not bothersome. They travel well around the room and hallway. And it was nice to not have to go to the bathroom. Of course I had no bowel movements due to not eating.

Wednesday, August 1, 2012

Email From Casey


This was sent to me by beautiful friend Casey, a cancer survivor
------------------

"I had cancer, but cancer did not have me. Cancer was not who I was. It was only a bend in the road that was my life's existence. An unexpected detour on my path. It was a lesson in the cosmic schoolroom that is human existence. So, I paused to rest and heal and study the lesson before I moved on to my life beyond cancer. I did not give in to fear and I was not discouraged by setbacks. Setbacks were simply opportunities to review the lesson. I was not ashamed of my scars. My scars were the brushstrokes in the masterpiece that was my life. I was thankful for the many blessings cancer brought into my life; People I never would have known, Love that I had never been still or quiet enough to witness, Humility I needed, strength I thought I had lost, Courage I never knew I had. I remembered that I could still have fun and that was okay- Even healthy - To be silly. I remembered that to find the joy in rainbows, I had to endure the rain and, I remembered always, That while I may have Cancer, Cancer did not have me."

Tuesday, July 31, 2012

Thoughts on Being Diagnosed with Cancer


Screening & Diagnosis
The Curtis family has been plagued with cancer for generations. It seems that most of the time there is a Curtis either battling cancer or dying of cancer. Over the years I have seen how cancer torments it's victims with fear and pain, and how it disables entire families with the stress of finances, scheduling medical visits and emotional turmoil. After the death of my uncle Beachel about one year ago when I thought to myself "who's next", I never dreamed it would be me.

Over the past 7 months I began noticing some small changes in my health. I had gained weight, developed a urinary tract infection and seen small streaks of blood in my stool. I went to the Warren County Health Department, where I was treated for the infection. While there the doctors urged me to get a colonoscopy due to my age. The colonoscopy was entirely painless and was completed in less than half a day. I was informed of a mass that was discovered in my sigmoid colon, and a biopsy had been taken during the colonoscopy. The biopsy came back as cancerous.

I was referred to a surgeon who would be removing the tumor along with several inches of my lower colon and several surrounding lymph nodes. Still a fluid situation, I am unsure about the extent of the cancer and what my situation will be after leaving the hospital. My hope is to be back to normal after recovery, but realize that there is still a possibility that I may need to have chemotherapy and radiation therapy.

Let me say that all in all, the screening is EASY. The diagnosis is downright scary. I have been fortunate to have family members and close friends with me throughout every meeting and test that has been done. I took the news better than I thought I would. The doctors have been compassionate and understanding. I can tell that they may be used to people breaking down, crying and being scared.

As of yet I have not broken down crying. I have continued with my normal life while going through pre-surgery testing and doctor appointments. At times I am in my yard and suddenly think "Oh God, I have cancer". It's a surreal feeling, almost like it's someone else's life or body I'm in. Then a few seconds later I go on about my business.

When the news came yesterday that there could be more tissue removed, I realized for the first time that my life may not be the same afterward. I may never go to the bathroom as I did before. Getting that news was very difficult. It's honestly an almost out-of-body experience. I felt as though my spirit had to rise above me for a few minutes to allow my body to not panic, faint or burst into tears. I am PETRIFIED and more fearful than I have ever been in my life.

On the other hand I realize I am alive and the process I am about to go through may keep me alive and pain-free for many more years. I also think of all the other people in the world in worse condition than myself. That is the main thought that keeps me going: It could be much much worse. I think of Job in the Hebrew Bible and know that my faith must grow rather than diminish. This is not something that God did to me, nor is it a test or a payback for my past. It is simply a bad thing that happened to a person, and bad things happen to people every day. I also think of Hunter Bernhardt, a child, a cancer survivor. I do not know Hunter, but I see his lluminarias at Relay, decorated with superhero stickers and such. I know that if he can do this, so can I. He is an inspiration to someone he has never even met. And I think of my dear friend Judy, a manager at Walmart who I saw last night. I told her I have been diagnosed with cancer. She looked at me with a stern look I have never seen in her before and said "FIGHT!" That single word was like a burst of empowerment that was thrust into me from across the isle.

Cancer Prevention Study
I enrolled in the Cancer Prevention Study the first week that enrollment began this past spring. I knew right away that it was something I wanted to do. They need my help. So simple and easy, all I had to do was go online and fill out a survey. I was given an appointment time on August 16 to come into the Chamber of Commerce downtown to complete enrollment.

After my diagnosis I realized that I can no longer participate in the Study, as one has to have never had cancer in order to enroll. But then I thought that they would want to know about my diagnosis. I knew that I was the first person in their study diagnosed with cancer, but over the years I will not be the last. Those statistics will be important to them.

They need your help. I urge everyone out there to become involved in the study. It won't help me get rid of my cancer or reverse my diagnosis, but it might keep my decedents from getting cancer. It might save the life of your grandchild.

FIGHT ON!

Thursday, July 26, 2012

The Big 'C'


I want to share with everyone my recent bad news. Two days ago I was diagnosed with colon cancer. I'm in the process of having tests to find out if it has spread or if there are any other masses anywhere else. Right now the plan is to remove the tumor next Thursday. It will be major abdominal surgery removing about one foot of my colon and about 8 weeks of recovering. As the days go by I will find
 out more about the intensity of the cancer and make plans accordingly.

I continue to be captain of our youth team and continue work hard for Relay with our Dancing With Our Stars fund raiser this November. Everyone's support and prayers comfort me.

Thank you to everyone who joins the fight against cancer through Relay for Life. Your hard work and compassion will help to end this killer in the near future. Our work is of utmost importance.

Thanks for listening. Keep me in your thoughts as I take some time to fight for myself. And in the words of the Trojans- FIGHT ON!

Darryl Curtis, M.A.
Curtistown Youth Team
curtistown.com