22 Percent Tumor Shrinkage But Still So Much Stress

I am breaking my promise. I am not taking a mental break but I have decided that I WILL have a mental break. and post 😀  What can I say? 22 Percent Tumor Shrinkage But Still So Much Stress!!!. How is that possible you might wonder?  Ug! Let me tell you. Maybe this should be considered a “keep fighting” post. We are celebrating but I don’t want to be unrealistic….we still have a lot of points of stress.

22 Percent Tumor Shrinkage

First, I cannot put into words how thankful I am to God and my doctors that I have tumor shrinkage after only receiving 50% of the medicine that I am supposed to receive but we must be realistic.

As you must know, we are under constant stress because of my sickness. It never ends. I know you know this but this blog is good for me to let things out and maybe help others who are going through similar things. Even after the PRRT treatment, which makes me sick, I am still nauseous, fatigued, dizzy and experiencing constant problems with my bowels. No, I cannot live a normal life. It’s just true.

Mr. Kaull, You Have Cancer

Yes, I have 22 percent tumor shrinkage but that leaves 78 percent still there. We have shed endless tears because of this and the stresses in life continue to build.

It’s funny, because just when you think people understand you realize that they cannot because they are not going to die from this disease. Their husband is not going to die. If things take their course I will die and my family will be torn apart. Nobody can understand this ultimate stress unless they are living it.

On top of all of that, we have holiday stress. Like we need this on top of cancer. Still, let me tell you how we got there.

Ross Perot?

Yes, that is who I think of when I open my wallet or look at my bank account. Why? You may not remember this but when Ross Perot was running for president he was against NAFTA. To illustrate why he said that America would hear a “Giant Sucking Sound” and it was jobs heading to Mexico. You can read more about that here. Any how, I think of that phrase when I think of my wallet. The money is gone and is still going. So far, our insurance has not even responded.  So, that is point of stress number 1 – Money or the lack of it.  😀

David Can’t Read

No, not literally but he has missed a ton of school and we have been told that if David does not keep up then he will be left back. Yes, the school is trying to work with us, or at least they are saying that, but we are still very stressed. David loves school but we have had to hold him back because we moved in the middle of his kindergarten year because of our crazy cancer life. He was very discouraged to be held back and it worries me to hold him back again. I hope this will not happen.  Point of stress number 2 – Will David suffer academically because of my cancer.

Herding Cats Gets Old

If you’ve never seen that commercial well here it is. I will explain below. 😀

 

That is exactly what it is like getting your 8 year old son out the door, through a crowded airport and on a plane. We’ve done it three times now and it doesn’t get any easier. In fact, it gets harder. Let me paint the scene.

At first the wonderment of the elevators would not end and OH, the moving sidewalks how they beckoned him. They were the perfect reward for a well behaved boy. He’s even got his own luggage. My little traveler.

But now, the elevators have lost their appeal and the moving sidewalks are only places to run and play. Zig zagging in between other travelers is only half the fun. I’m sorry and excuse me have become automatic for me. I even say it in my sleep now. No, forcing him to hold my hand is not the answer since I am fatigued and cannot hold him like I used to. My wife is juggling the luggage. Yes, there are punishments that work but such stress. Yes, we get through it but it gets harder every time and he does not understand because he is 8. This last trip was our third trip of multiple airports on each trip. Finally, this is all being done while I am in a wheel chair. Point of stress number 3 – Herding Cats Gets Old.

Saying “Goodbye” Doesn’t Get Easier

So, we have successfully herded the boy through two airports at a minimum and we are on our way to our loving family because they have offered to watch David while I get my PRRT treatments. Lisa must come with me for more than 1 reason.  One of which is that it I do not have the energy to handle this on my own. My lovely wife has done so much for David and I. How can I repay her? I think I’ll get better. 😀

So, we arrive and settle in….no we are not in our own house and yes we are invited but we still feel bad that we cannot help more. We are exhausted and I know they understand but we still feel bad.

OK. Time to say goodbye and fly to Texas for my cancer treatment. Sweet, little, innocent boy….come here and give us hugs. He knows I am getting medicine but does not understand. I have tried to explain life and death to him but he is still too young. When we see a dead bug, a dead bird or even catch a fish then I try to explain a little bit of life’s hard lessons. He does not understand that this may be one of very few Christmas holidays we might spend together. The hugs get longer with each and every trip. He says “Daddy, I hope you feel better after you get your medicine.” 😀  Sweet, innocent boy. I say “Me too” and I give him a longer hug. Last time, I was told that he burst out crying after we left. He is already talking about my next round of PRRT. He is obviously worried. Point of stress number 4 – Saying Goodbye Doesn’t Get Easier

 Saying “Stay Away” Doesn’t Get Easier

If you didn’t know, after you get PRRT you must stay away from your family and friends for about 1 to 2 weeks. Children and pets are especially sensitive to the radiation and so, I have to stay away from David. Yes, after hearing that David burst into tears on our last trip I can now only give him a short hug and tell him to stay away from me. Of course, I say it with love and explain that I have medicine in me that can make him sick. This last trip he got very upset. We closed the door and told him it was only for a short time. He accepted it but was not happy. “So, no cuddling with Dad, right?” he asked. “Yes, we said “but only for a short time.” Did that make it easier for him or me or his mother? NOPE but we have to deal with being apart while being together. All that Lisa and I can think about is “What if….???”  What if I don’t make it? How will that affect him. Point of stress number 5 – How will he react if I have to stay away forever?

Family And Friends

This is NOT true of ALL family and friends but, some of the ugliest things I have ever heard during my cancer fight have come from those who are closest to me. Have you experienced the same? I don’t get it. Everything from accusing me of lying, ignoring my condition completely, acting insulted when I am sick in front of them and implying that I am rude for doing so and even personal attacks on my family. I have even had people gossip about me. Yes, things can be forgiven but some things leave, as they say, a permanent wound….they leave you damaged and hurt forever.

I guess the worst part is when you get stress added to your already existing burden when you are trying to avoid it and move on.  If you are reading this and have issues with family or friends maybe consider dropping those issues and just moving on. Sometimes wires just get crossed and nobody is at fault. Maybe it’s just bad circumstances?!

If you’ve said things that have wounded those around you with disease maybe consider apologizing and making it right. Don’t assume that it doesn’t matter or that person got over it and moved on. The hardest part of our cancer fight is staying positive. If you help somebody stay positive you will be doing good even if you have done something wrong in the past.  Point of stress number 6 – Some People Still Do Not Understand?

Christmas Stress!

So, on top of all of this we had to make last minute travel arrangements because Excel Diagnostics needs to wait for the labs to come back. We had to shop for gifts and get them to everyone on time….and yes, spend more money, stop our mail, set up our tree so David had a Christmas and was not the only kid to have no lights on the house. Everyone wants to know what we want for Christmas and will not be patient enough for me to pull together a list for all 3 of us. I get repeated emails which add to my stress. To top it all off, we are struggling to finish organizing our house from our move. Lisa has been in tears many times about this. “I’m sick of this” seems to ring a bell and I don’t blame her. Point of stress number 7 – People fail to understand that we cannot always meet their “needs” during the holidays.

Have A Drink And Relax

Isn’t that a great thing? You come home and pour a nice glass of wine and take the edge off. My only problem is that I can no longer do that. If I have any alcohol I get sick. It seems that all of the things that I used to use to take away my stress are no longer available to me. For example, I am too fatigued to exercise. I used to be very active but not any longer. Point of stress number 8 – We have no healthy way to remove stress from our lives. 

Are you stressed?  Yeesh, I hope not but maybe it’s good to be honest too. You may not have ALL of these stress points but just one can add so much to your cancer fight that it can be overwhelming.

22 Percent Tumor Shrinkage But Still So Much Stress!!!  We are all going through stress but cancer just adds this incredible burden of stress that cannot be conceived of by people who have not gone through it.

FEEL FREE TO VENT IN THE COMMENTS BELOW.  😀
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3 Comments

  1. Ed, I have had many of the same problems as you; none of my family apear to believe I have terminal cancer as I have lasted too long. PRRT has shrunk my tumours but i will still die of nets. You are right just don’t bother with those disbelievers and bringers of stress any more.

    My heart goes out to you, particularly over your son, one thing I will say is it is never too late to learn and at some point when his life stabilizes he will catch up. You can encourage him to do so saying he will be doing it for you. Any time you manage together is far more valuable though, so just love him and don’t blame yourself.

    Put all your time and energy in to your family at least you will know you have done all you can for them.

    I wish there was a magic wand, the best I can do is to send you love and pray for you and your family.

    love Christine

    • Christine,

      Your words have really brought me so much comfort. I don’t understand why people cannot understand that I am sick and don’t need added stress on top of everything else. I will try to take your advice.

      Merry Christmas, Happy Holidays and Happy New Year to you.
      God bless you.

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