No News is, well...No News...

    Written by Wayne:


    Well, hello. It's been a while since I have sat down and put pen to paper, so to speak. Things are pretty much the same as the last time I wrote. Platelets are still low. One thing is different though: I have not had a treatment in almost 2 months. 
    It is very discouraging to drive all the way to the cancer treatment center, go through the process of having vitals taken each Monday, see the doctor and then be told no treatment. Both my GP doctor and the oncology team are worried about my mental state. During a regular visit to the GP I expressed my frustration at not getting treatments. He assured me my concerns were normal and if things got worse he could give me a mild sedative to ward off depression.
    Last Monday when I got the latest "no" in a series of "no's", the doctor's assistant walked Ann and me to the front desk. She told me they had medicine to help with the frustration. I declined her offer by saying between diabetes and cancer I felt that I had enough drugs in my body. I could have told her I am too simple minded and shallow of character to be depressed. Discouraged maybe, but never depressed.
    Not getting a treatment is actually a two sided coin. On one side, the tingling in my fingers is gone. I can eat small amounts of spicy food. I can use a brush full of toothpaste without burning my mouth. The little blisters in my mouth are healed. I guess this is what a cancer patient would call normal.
    On the other side of the coin, without the drugs in my body the cancer has a chance to grow. The doctor showed me a graph indicating the cancer is not moving at this time. I was also told this is a slow growing tumor. 
    However, life is good. On Fridays I go to the elementary school and read to my granddaughter's kindergarten class, which I thoroughly enjoy. As an added bonus I get to work one-on-one with two third grade boys who need a little help reading and staying focused. We are also working on being less disruptive in the class room.
    No one asked for the illness they have, yet it is what it is. My prayer to GOD daily is "if it be Your will, let the chemo add a few years to my life". I hope that is also your prayer. Not necessarily for me, but that God's will be done in all our lives.
    Thanks for your time, this time, till next time.  So long     WP

New Journey

    At last, I have completed my round of chemo treatments, 12 of 12. It should have been over the second week of April, instead it was the second week of June. Low platelets were the problem. Even the new meds kept them low. 88,000 last check but they gave me a treatment anyway. They should be closer to 100,000.
     A major concern of mine at the end of treatment 12 was "What happens next? Do they send me home to fend for myself? Take two asprins and call them in the morning?" No and no. I will continue to take chemo as long as it is working. I will have another C T scan sometime in Sept. By then the Dr. can tell if the new medicine is effective.
    The tingling in my fingers is still with me. Even the mildest spicy food seems to set my mouth on fire. I was under the impression the new drug would eliminate that sensation. So far it has not. The only side effect I have from the chemo is a constant tiredness. At times I have to will myself to get up and move around. Being tired is the only symptom I have of the cancer. I see people at the center that are in much worse condition than me.
     Some are brought in in wheel chairs, some have no taste. Some can not tolerate the temp in the room and have to be covered with blankets. I have yet to hear any of them complain. {I hope I am not the one to start}.
    On a more postive note, I can still hit a golf ball, just not as far as I used to. I can walk in the mall, just not as long. The things I can do better now than in the past is love and enjoy my family { Grace is the light of my life}. I enjoy my friends better, newly mown grass smells fantastic, and the day looks brighter. In other words, I try to enjoy every second of the time I have left. I am working on the patience issue.
    Another issue I want to address is to the people who are praying for me. I know you take time out of your event filled day and pray. When you go to GOD and pray from your lips to Gods ear and mention my name is the most humbling thing I have ever experienced. I don't know enough words to properly thank you. I pray that God will bless you greatly.
    Hopefully we will start on our new journey on Tuesday. I firmly believe the future is what you make of it. I have told many Sunday School classes life is full of choices. All the good that happens to us is from GOD. The bad is because someone made a bad choice.
    Thanks for your time this time. Till next time so long.
    

Changing things up a bit...but got a good report

    Another day, another trip to the cancer center. Hoping the fourth time is the charm (third time did not work...neither did the first or the second. In my case, the five most depressing words I can hear  are "your platelets are too low". They have been running 55,000 to 66,000 for week after week. You start wondering is the cancer gaining ground. Every spasm or twitch you ask yourself, "Is that new? Is it growing?"      
    All my vital signs are good, with my weight holding above 200 lbs. Pulse, temp, bp, hemoglobin are all good. The culprit has been and still is oxaliplatin . It will not let the white blood cells grow. Doctor told me my case is a little unusual. 
    Doctor also told he was taking me off that drug and putting me on CDT. Each letter is a $1.00 word. No way can I repeat them. He also ordered a CT scan to have a benchmark with this new drug. 
    I was told the new drug is as effective as oxaliplatin. With this new drug, I give up the tingling fingers and the aversion to cold. I will gain a new side effect of diarrhea. Going from the cold to being afraid to sneeze. 
    Had the CT scan on Thursday but had to wait till Monday to hear the results. The longer the wait the more your imagination dwells on the worse case scenario. The people I interact with and myself  know the elephant is in the room, but we don't talk about it.
    After a long weekend I went for the fourth time to get  treatment number eleven. Platelets were 101,000 but he changed the medicine anyway. Results of the CT scan were positive. The tumor is still shrinking and the liver is stable. MY GOD {our GOD} is still in hearing prayer mode.
    If you run out of things to pray for in the next few days pray for me. When praying for me pray it's GOD'S will.
    Thanks for your prayers, concern and love. Till next time so long.  Wayne

Treatment Symptoms and other "fun" stuff

    The last two treatments I took, my platelets were between 65,000 and 80,000. My thinking was the doctor won't give me another with my platelets low, so I cancelled my appointment for mid April. This will put three weeks between my 8th and 9th treatments. 
    Week two of a treatment you start to feel better. The tingling is less severe, cold does not bother you as much, you begin to get your strength back. The extra week off was great. You actually start to feel normal. Since there are no outward signs of cancer it's easy to put your condition on the back burner. However there are little subtle reminders. Your toothpaste seems to burn your mouth. My nose runs and my eyes water. You tire easily.
    Dawn of a treatment day. 8:00 am  appointment so we leave the house a 7:00. Don't know what to expect when we get there. Normally I want blood drawn from my arm and get hooked up in the back. Port has to be flushed once a month. It has been three weeks between treatments and if today I don't get one that would be five weeks. So they had to use the port. 
    Did not see the doctor but his nurse assistant. Platelets were 100,000. Time to get hooked up.
    Today was a full strength dose of chemo, back on oxaliplatin. Now a four hour sit and wait. Lady on my left had radiation for breast cancer and now a follow up of chemo. She is 79 years old and very scared. The guy on my right has a six plus hour treatment once every three weeks. He brings nothing with him to help pass the time. Me, I carry newspaper, puzzle books, reading material and an mp3 player. When lunch time comes, Ann will bring me a sandwich and drink. My friend on the right has no one to bring him anything. I offered to have Ann bring him something, but he refused.
    Doctor room treatment is over, hooked up to my little buddy and on the way home. Already I can feel the tingling caused by the oxalipatin. I have written on eariler posts that I have had no side effects. This time I felt it would be different and it was. A headache started about 3:00 pm, the tingling increased, and a slight sick to my stomach feeling came on. I told myself all this was caused by a full dose of chemo. Hope I am right.     
    Tuesday and Wednesday the headache, tingling and sick feeling continued. Got the pump off about 11:30. Had lunch at a buffet rest. My appetite was off. Wednesday afternoon was a take it easy day. Headache and sick feeling abated. 
    Thursday was a lost day. I spent most of the day in my recliner just out of it. In bed by nine and got a good nights sleep. Felt well enough on Friday to play a round of golf. May have over done it. Paid the price on Friday night.
    GOD is still good and in control. Till next time. So long.

Playing the waiting game...

Another trip to the cancer center and another missed treatment. Low platelets again. In the future I will let them draw blood from my arm and not go through the ordeal of the needle in the chest. If I get a treatment, I will let the nurses in the back hook me up.

The culprit and cause of low platelets is the drug oxaliplatin. In a previous treatment my platelets were 90,000.  They cut the drug by 20% and gave me a treatment. Platelets continued to drop, causing me to miss a total of four appointments.

The last trip to the doctor was a repeat of low platelets and a feeling of helplessness. The nurse practitioner told me I would get a treatment and they were leaving out the oxailiplatin. On one hand that was good news. That drug causes sensitivity to cold, so for a couple of days I cannot pick up a can of soda, allow cold air to hit my face or wash my hands in cold water.

On the other hand, if they are leaving oxailipatian out, how important or key is that drug to my recovery from cancer? Are the other drugs able to carry the cure by themselves? Maybe in the future I will get a treatment every three weeks instead of every two weeks.

An upside to not taking that drug is I don't feel as bad after a treatment and I recover quicker.

I felt so well I was able to take a mini vacation this week and go to North Mississippi. Good to see family members and have a meal with them. Also saw some dear friends. It was along trip, but worth it. I was tired and spent the day after we got home on the couch.

We will try again on Monday. I am a total optimist and believe in the best. I still know who is in charge and my faith has not and will not waver. May GOD bless you as well as HE has blessed me. 

Thanks, till next time and so long.

Ready for Treatment 7...

Written by Wayne:


How about this crazy winter weather? This has been one for the books.
    
In the past few weeks I have gone for times for a treatment, and four times I could not take one. My platelets were too low. Low platelets is something the doctors cannot give you a shot to improve, there is no medicine or pill they can give you to bring the count up. Low platelets are a by-product of chemo. Only a transfusion will help and I have no idea what that would entail. I start getting  pumped up the day before a treatment. Getting ready to get hooked up, resign myself to a long period of sitting still. Then to be told "no treatment today." It really takes the wind out of my sails. 


Having vitals is not bad...blood pressure, temp, pulse, question about new medicines, are you taking blood thinners, etc. Same questions each week but I realize they are just doing their job. Now comes the hard part, getting the port hooked up. The needle that goes into your chest is only 1.5 inches long. The pain that the needle generates does not last long but is very intense. Every time it happens I want to reach behind me and see if came out the back.

Don't read to much into the pain level. I am a wimp. If they ever make wimp an olympic sport, I will most likely captain the team.

On a happier note, I had a CT scan and it showed the tumor mass was shrinking. The liver is looking better. Blood level is 12.6 {12 is good}, white blood cells are good and my weight is holding at 200 lbs. Much better than in November. Thank you for your prayers and concern. I am still convinced GOD is in charge and HIS will shall be done.

In my younger days we listened to St. Louis Cardinal baseball. Jack Buck was one of the announcers, his signature sign-off was " thanks for your time, this time, till next time, so long."

Treatments and Platelets and Pumps, oh my!

Written by Wayne:

On my last treatment right after Christmas, the doctor was concerned my platelets were too low since they were at 93,000. He went ahead and authorized a treatment for that day, December 27. He told me if my platelets  were not improved by the time of my next visit I would have to skip a week. However he did reduce one of the drugs by 20%. That should help with the tingling in my fingers and lips and my  aversion to cold.

I received a call at 8:30 Sunday night, January 9, that my Monday morning treatment was cancelled. Snow and ice took care of that. Had I not got the call, I am hard headed enough I would have been on my way to Carrollton on Monday morning. I thought I might have a  call on Tuesday or Wednesday to come in. I was ready to go regardless of the conditions of the road.

On Thursday I went to breakfast with my accountability  partners. When I got home, the treatment center had just called asking if I could come in. My first concern was, "Do I have to wear the pump from Thursday to Monday?" No! Someone would meet me on Saturday to remove the pump. {more on the removal later}

By now you know the drill…co-pay, vital signs, blood work. My weight is steady. white cells are good, blood is 12.2 and the platelets were 112,000 - all good and positive signs. 

The treatment room was almost empty while I was there. I was the only patient that was to get a pump. I have a port in my chest which is not removable, except by surgery. I watch the people that have needles in their hands or arms and see how difficult it is for them to move around. They are taped pretty heavily but I have seen them pulled out. That created a bit of a stir.

Wearing the pump for 46 hours changes your life for that period of time. It comes with a belt you can wear around your waist or over your shoulder. In the evenings, I take the belt off, put on a robe and drop the pump in a pocket. At night, I stretch the hose out as far as it will go. I then put it under a pillow to muffle it so I can sleep. When the pump activates, it makes a clicking sound. When all is still and quiet, after a while, it seem someone is beating on a drum.

It's 1:00 pm on Saturday, January 15, and we meet the lady {nursing supervisor Sue} and she takes the pump off. Flushing the pump ,disconnecting from the port. putting a band-aid on the port, giving me a shot takes 7 to 8 minutes and we are gone.

Now more on the pump removal: We received a letter from the insurance company. I now have to pay a co-pay of $35.00 to have the pump removed. This is a 10 minute process tops, with no doctor present. If I had the energy I would get back on my soapbox, but it would change nothing. Thanks for your prayers and concern. 

Wayne

A little relief and some gratitude

Posted by Teri:

This Monday, which just happened to be Day One of Snowmageddon 2011, was a scheduled treatment day for my dad. He has taken four out of the required twelve, so we have eight more treatments to go. Last treatment, his white platelets were very low, which is a common side effect for chemo patients. Basically, the chemo is annihilating his immune system. His doctor is monitoring his levels, thankfully, and recommended waiting an extra week for the next chemo treatment if his platelets were still low. Well, Dad is hard headed and would have pushed for the treatment to happen regardless. So, a little relief came over me when I realized that with all the snow and ice (No kidding, tomorrow is our THIRD snow day. I'm telling you, it's Snowmageddon), he would not be receiving his next treatment on Monday.

Dad will always tell you that he is fine. Whenever anyone asks him how he feels, he busts out these compellingly believable answers: "Oh, I'm great!" or "I feel fine/good!" Let me ask you, have you ever met a chemo patient that felt great? That was a rhetorical question, so I will just answer it for you...NO, you have not. And when you talk to my dad, you're not talking to a chemo patient that feels great either. For the sake of argument though, just go with his answers and be encouraging. Believe me, Dad is more concerned about you than he is about his own health.

His treatments are getting worse though. I don't mean that the injections or the chemotherapy has changed or morphed into a more terrible poison (is that even possible?). I just mean that the way it effects him has changed. He tires very easily and just doesn't "bounce back" from each treatment as quickly as he did initially. The doctors warned us that this would happen, but it is not very fun to watch. Here's where my gratitude comes in...bet you thought I wouldn't get around to that referral in the title, huh?

I am grateful for the people who read this blog and pray for my Dad because they are helping to carry us through. I am not saying a mere "thank you" here, because it's more than that...it's serious gratitude for the people who care. There are people praying for Dad that have been friends with my parents longer than I have been alive. There are people who learned about blogging, simply so they could read this blog and stay connected with our cancer fight. There are people praying for him that have watched me grow up, and even kept me in line when the occasion called for it (It rarely happened, but we all get froggy every now and then, ok?) There are people who know only one member of our family, and they still pray. There are people who are my dearest friends, my church friends, my casual acquaintances...they all pray. The people I taught/teach with, the ones who know my Dad through school, church, or birthday parties, and even the people you think you're no longer friends with will all pray. What does that tell you?

It tells you that God is good. He has blessed our lives with amazing people. Thank you for being our prayer warriors, our sources of encouragement, our meals brought, our hugs given, and our shoulders to cry on. Thank you all for being our friends.