Saturday, April 28, 2012

Got Air?...Want to share!

My air has been rather short lately. I went back to the doctor on Wednesday and I flunked my respiratory function test again.  I did my research because I felt that were things being overlooked. I felt that the "obvious" diagnosis wasn't the source of the problem.  Because of all my past experiences, I have learned it is good to be pro-active when it comes to your health.

I found a very good, reliable article online, and I was able to take  some valid information to my doctor about various complications that can occur and are common for people who have had a radical cystcectomy that includes an urinary diversion replaced by one of the many types of pouches.  I made some suggestions about some things to check-out with lab work.

Yesterday, I found out that my potassium level is still low, and my B 12 is also low.  No wonder I have been feeling so yucky. 

Low B 12 can cause problems concentrating, swollen and red tongue, shortness of breath during physical exertion, fatigue, dizziness, headache, cold hands and feet, heart palpitations and chest pain.  Now we have identified the problem, we can begin to correct it.  We increased my potassium intake, and I am going to be on B 12 for a while.  Soon, I should be back in the saddle again.

Things have not been all bad.  I made it to work every day this past week. There is a feature article that will be published in the May issue of Verge magazine.  I have a book signing scheduled for May 5th. at the Inner Bean beginning at 4 p.m.  One of my photographs that I took when I was at Tybee is going to be used for the cover of my colleague Dr. Kay's book, Wings of Time, that will be published soon.

I am also going to begin a pulmonary rehabilitation program next week.  That should help me get back on my feet sooner...or I should say my lungs recover from this episode.   

"Remember, if you ever need a helping hand, you'll find one at the end of your arm ... As you grow older you will discover that you have two hands. One for helping yourself, the other for helping others." ~ Audrey Hepburn

That is where I am right now, and I hope you are too. 

"Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky." ~ Rabindranath Tagore

Monday, April 23, 2012

Words for the Week on the Rocky Road




We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot. ~ Eleanor Roosevelt  

This past week had been a rough one health wise, but I think that I am on the upward trail to getting better.  I have a doctor’s appointment on Wednesday for more tests to see if, or how much things have improved with the bacteria infection. 

This experience did teach me something new about being a bladder cancer survivor.  I had never had a urinary tract infection since my radical cystcectomy.  I cannot not say that anymore. I think that bacteria was in more places than the ole Indiana Pouch because of the other symptoms I had. 

I go Wednesday for follow-up tests to see if the antibiotics worked, or if I need more.  I am hoping they did.  I will keep you updated.

"Bacteria keeps us from heaven and puts us there." - Martin H. Fischer

Wednesday, April 18, 2012

Good News and Not so Good News on the Rocky Road

This week had its ups and downs.  There were some very good things that happened, some that were not.  Monday, I went back to work for half-a-day.  I was a little shaky, but I felt better as the day progressed.  When I got home, I felt good enough to create another video using one of my poems from Pulse Points of a Woman's World.

I received an email telling me that Verge Magazine is going to publish an article about me and my book, Traveling a Rocky Road with Love, Faith and Guts, in their May issue.  How very nice of them to do this. They have both a print magazine as well as an online version.  I am really looking forward to see how it turns out

Tuesday, I worked until noon.  I had to go check on my lab results.  The kidney function was fine, and so were some of the other test. However, I have been told that I have my first urinary tract infections in the seventeen plus years that I have had my Indiana Pouch. I am now taking CYPRO to clear up that.  

The next thing on my agenda was to attend the launching of a cystectomy support group at the Cancer Center at Georgia Health Sciences University. I had the honor of being invited to be the guest speaker at this first meeting.  I was thrilled to do it because we are going to have a local support group, and I know how important that is to bladder cancer survivors.  I took a copy of my book to give to the attendees.  I hope my story will serve of some value there.

I finally made it home on Tuesday, and just got relaxed when I received a call from MO telling me that someone had broken into the house and the storage shed.  That really upset me because I had no way of knowing what they had taken.  Would you believe that my blood pressure shot up!  It did, and I decided that I needed to chill out.  There wasn't anything that could be done but call and report it to the local sheriff.  My eldest son took care of all that, and found someone to go secure the house.  My granddaughter is going to drive up there from AR to take inventory to see what is missing.

This morning my blood pressure was down some, but not enough.  I decided that I had better stay home today.  Tomorrow I will go back to work.  I really do not want to be taken out on a stretcher again. It stresses everyone there out too much. 

I think at this point I should end this entry with a quote that was a favorite of my grandmothers: "You've got to take the good with the bad, smile with the sad, love what you've got, and remember what you had. Always forgive, but never forget. Learn from mistakes, but never regret."

Stay tuned, there is always more to come.  Please feel free to leave a comment, contact me or provide feedback.  I am on Linkedin, Twitter and Facebook.

Thursday, April 12, 2012

Flunked My Test so Now I am on House Restriction

I went to see my family doctor yesterday, and she ran a lot more tests.  She is doing a blood workup, and she gave me a pulmonary function test.  I flunked it, so now I am restricted to the house on oxygen until at least Monday. Oh well, it could be worse.  At least I am home and I can sit at my computer and write.  I have a portable oxygen concentrator that I can take with me to my office.  She added another type of blood pressure medication, and is making an appointment with a neurologist.  I told my friend that I flunked the test and was put on house arrest.  She cracked up!  At least I made someone laugh yesterday!  To quote Bill Cosby, "Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it."

This is just another rock to climb, but remember I am from MO and that stubborn mule is my mascot.  This, too, will just make me stronger.  Besides, I have Tom to keep an eye on me and out of trouble...well, most of the time, the trouble part is the biggest challenge!

Next week, I have been invited to be the guest speaker at a first meeting of a brand new cystcectomy support group.  I have given presentations to all sorts of audiences on a variety of topics, but this is a first for me.  Do you think I need to share my story?  I have asked if they wanted me to organize it around a definite theme.  I am waiting to hear back on that.

If you want to keep up with what is happening in my world, just follow along.  Sometimes it is just like a soap opera!

Blossom that fell off the Poplar tree in our backyard.
"Time is a companion that goes with us on a journey. It reminds us to cherish each moment, because it will never come again. What we leave behind is not as important as how we have lived." ~ Jean Luc Picard

A flower on my patio.

A squirrel in our backyard.

Develop an appreciation for the present moment. Seize every second of your life and savor it. Value your present moments. Using them up in any self-defeating ways means you've lost them forever.” ~ Wayne Dyer

Tuesday, April 10, 2012

Sand, Ocean, Rocks, Boulders and Thunderstorms on the Rocky Road this Past Week and a Half

This past week and a half has been eventful to say the least.  I was having some major problems with my potassium level.  I got that up to low normal, but I was still not feeling my old self.  We decided to go ahead with our plans for the beach regardless.  We made sure we had a nice supply of  fresh tomatoes and avocados with us so I could supplement the potassium tablets.  Monday was a nice trip to Tybee Island.  It was a little windy and a bit of chill in the air, but very nice.  We arrived at our hotel that overlooked the beach, and stopped by the office to check-in.  Our room wasn't ready, so they gave us a room upgrade.  We had a super view of the ocean and the beach.  We went for a short walk along the shoreline once we got unpacked.  The hotel dining room is very nice, and the front of it is a huge arch (much like the St. Louis arch) that is all windows so that you have a fantastic view while you dine.  I had little access to the internet all week, but I did find out that on Friday, April 6th., the interview I had with Lloyd Paige was posted on his site, The Paige Today, at

Tuesday was a beautiful sunny day.  The sunrise was just gorgeous. Tom and I enjoyed every second of it and I was feeling fairly well.  We checked out the beach, and the shops.  We lounged on our balcony breathing the salt air, watching the people on the beach, and the birds.

On Wednesday, our friends showed up to spend a few days.  The day for the most part was very nice again until that evening when the storm clouds began to roll in from the east.  We had a couple of thunderstorms, and the wind picked up chilling the air.  I was having some breathing problems, but still doing fairly well. The sky was really interesting as the clouds for the second thunderstorm began to roll in over the beach.  There was one area that looked as if there was a large hole, the clouds were white and brightly illuminated.  The rain shower was heavy and short-lived.  The thunder and lightning did not begin until the storm was out over the ocean. The lightning shot out of the clouds like large ragged arrows aimed at the water out close to the horizon.  The waves began to build, and we watch them break farther and farther out on the ocean's surface. 

Thursday was cold and windy.  I tried to go for a walk about mid-day, but I just could breathe enough to do it.  It was as if the wind was taking all my oxygen.  I had to give up and return to the hotel.  The sea gulls and black birds were around everywhere, so we decided to have some fun feeding them.  We soon found out that the poor birds on the small parking area between our balcony and the beach didn't have a chance to get the bread we were throwing out.  The gulls that took to the air and swooped down as we would throw out a piece of bread would catch it in mid-air.  It became a game to see how close they would come to our balcony.  One of the black birds decided to even the odds by hopping on the rail to take his food before it was thrown up in the air. 

Friday morning it was still chilly and cloudy. However, the sunrise was beautiful.  I was feeling worse, and I did not want to go farther that our balcony.  Minimal walking took all my air, so we stayed in room and I sat on the balcony off and on.  Once more the birds were the main source of entertainment.  It was a pretty uneventful day, but nice to enjoy the ocean breeze.

Saturday morning we began to prepare to leave for home.  I was still not feeling up to par.  We made the trip home, and I unpacked.  On Sunday, I sorted the dirty clothes to wash and to get ready for work on Monday.  I was still short-winded.  I took one load of clothing out of the washer and put them in the dryer.  By the time I put the second load in the washer, I was completely breathless and felt as if I would pass out.  I told Tom that he would have to take over because I couldn't finish.  I decided to check my oxygen level.  It was in the upper 90's, and that puzzled me.  I decided to take my blood pressure.  It was about 258 over 158.  That scared me.  I decided I had better tell Tom.  We decided that I had better go to the emergency room to get checked out to see what was going on with me physically.

We arrived at the emergency room at about 2:15 p.m.  I told the lady at the check-in desk.  They took me back and ran an EKG.  They sent me back to the waiting room.  About an hour later, they called my name to go to the check-in desk.  They sent me back to the waiting area.  Finally, about 9 p.m., I was put in a "Decision Making" room.  I was told they were keeping me to run blood work, an echocardiogram and do a stress test.  I had not had a thing to eat since breakfast, and nothing to drink since I had left home.  I was thirsty, and hungry.  They let me have two small packets of graham crackers and some ice water.  The lab person came in and set up an IV cannula, hook me up to a heart monitor, and oxygen.  Then, another person came in to draw about five vials of blood.  I cautioned her that if she took too much, I would charge for it.  I don't think she saw the humor in my quip.  She didn't even crack a smile.

The next morning at seven in the morning, they were back again for more blood.  I was only allowed enough water to take my medicine.  Some of my medicine, they didn't have in the hospital pharmacy, and they didn't want me to take it even though I had it with me. They gave me a shot of radionuclide injected into my bloodstream.  Finally, about nine-thirty that morning they came to take me for the tests.  The first thing they did was to put me on a machine that take multiple pictures of the heart at all angles.  That meant lying on my back perfectly still with my arms above my head for about thirty minutes.

Once that was complete, they put me back on the stretcher and wheeled me to a "holding room" for quite some time.  I didn't see a clock, but it seemed like forever.  Then, a lady came to get me to run the echocardiogram.  After that, it was back to the "holding room" again.  Finally, a nurse came to get me to take the second part of the chemical stress test.  A chemical stress test uses an isotope medication that is inserted into the body via an IV. Its purpose it to take the heart to its highest extremes of stress. This is accomplished by forcing the arteries of the body wide open so that blood is allowed to flow at maximum volume.
I was hooked up to an EKG machine during the test so that my heart was monitored at all times. The temporary side effects of the test were severe.  The chemical opens the arteries in the manner used ensures certain symptoms,  and I was told could include, but are not limited to hot flashes, tingling or burning throughout the body, sweats, severe headache, nausea (and possible vomiting).

I personally thought that nothing could hurt as much as what I had envisioned for the pain of a heart attack itself.  I have never had a heart attack, but I think this had to be worse!  This test has to be as severe if not more so. Although it only takes about six minutes, the agony and pain of the test makes it feel more like six months. I felt as if my heart, lungs and every vein and artery in my body was going to explode.  I know the  purpose of the CST is to determine how the arteries respond; how well the blood flows through the heart; and whether or not any blockages are encountered in the process, and it apparently works well because much later I found out that  the doctor was satisfied with the results.  I, on the other hand, was not since it left me with a raging migraine, but it subsided fairly quickly. 

Again, I was taken to the "holding room" to wait my turn for more pictures of my heart.  I was finally returned to my room sometime after two that afternoon.  There was more waiting until a doctor came to give me the results, and to release me.  I found out about six that evening that I was going home, but it nine that evening before a doctor showed up to begin the hospital release for me to check-out.  The doctor who released me recommended that I make an appointment with a neurologist.

We arrived home about 9:30 p.m.  I stayed home today.  I am absolutely worn out, and I am not breathing any better than I was before I went to the emergency room???????  I did discover this morning that another review of my book had been posted on my Author's Den Page at:
Who knows what will happen in the near future, but I will keep you posted.  I am still tackling it all with love, faith and guts.

More pictures taken at Tybee Island.

Check back who knows what is next.  Whatever it may be, it is never a boring minute!