A Week Off or A Week of Wating

This week at CTCA, even with the barium swallow test and a specialist visits, the week actually went pretty smooth. First of all, due to all the damage, changes, radiation, and scar tissue in my throat and now the addition of a paralyzed diaphragm on the left side, I was a high risk candidate for silently aspirating food or drink into lung. The good news is, outside swallowing a large mouthful of fluid, nothing went down the esophagus. So chugging beer is out (haha), other than that I’m good to go. One of the specialist, my pulmonologist’s partner wants to continue to watch my paralyzed diaphragm since we are not seeing any decrease in quality of life at this point and give it more time to heal on it’s own. Also we met with my plastic surgeon (the other specialist) to look at my neck. Now that we are off the Erbitux he is beginning to see some change and change is good. He also wants to watch and see if it will start to heal on it’s own now. Chemo went smooth.

Speaking of chemo, this was my third dose in my second cycle. So that means I am off next week to complete Cycle 2. And as of November 30th, I will have a new PET/CT scan. It will be time to be “re-staged”. Dr. Randolph and Lori and I will see a few different options. Either the cancer is gone and the chemo will be done or the cancer is going away and we continue with more stages of the same cocktail, or their is no real change or changing the wrong way and that means another formula for the cocktail and a different cycle. Obviously, we are praying for these in the order I have listed. No cancer – no chemo would be optimal. Less cancer – continue what we are doing is second since it means we are eventually on our way to no cancer- no chemo.

We finally saw Joann of James an Joann C. even though we never were in a place where we could see James. His cancer has not changed at all even though he has not had treatments in quite sometime. They are going to check him once a month or once every three weeks to make sure the cancer has stabilized. It was great to see Joann. She is always full of cheer.

So pray for my friends James and Joann, our dear friend Gene who felt some effects from his chemo but has made it back to work. And pray for Lori and I as we try to remain strong for each other as we wait for me to get restaged and my family who will not be silly enough to try and be strong, they will just be truthful and prayerful. Pray Lori and I can set our pride aside and pray together about the worry and concern we both feel and that the Holy Spirit will get right in their with us and comfort and strengthen us.

I want to thank you for taking time to read my blog. Make sure that you read Links, Prayer Request, and Random Thoughts. Help me with the Prayer Requests, and laugh at what comes out of mind in Random Thoughts. Links are important connections that you can make if your interested. If you have a friend that knows me or would benefit from reading about the path God has me on, get them to subscribe, too (at the top of the column on the right.)

Love all of you in the Love of my Christ,

Alan, Booger (according to Lori)

Tough Day

I knew I would have to pay for the last two  days. They were fantastic. No side effect, energy beyond anything I could expect. Well today is not one of those day, but I still thank God for it. I am extremely tired, joints hurt like flu symptoms, not hungry but struggling to eat. I laid in bed until 3:15 and the rest of the day I have been in my recliner. Oh well this is another great day that the Lord has made. I’m sorry I could not fully enjoy it like He would want me to but I enjoyed it the best I can. Days like this remind me that the chemo is the Kung-Fu chemo we have prayed for and it is kicking that cancers butt. I knew that there would be good days and bad days, and that didn’t bother me a bit. Because I knew that there would be no day that God was not by my side. So, I’ve thanked God the past two days when I felt so good, and thank you Lord for being with me on this bad day. Knowing you are with me makes it tough to call today a bad day. I love you Lord and I love my 10959342-gold-christianity-crossfamily, friends, and prayer warriors.

Y’all have a great day knowing God is right there with you, too.

Sincerely,

Alan

Good Morning Sunshine

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Good morning sunshine!!

This morning has been quite a God thing. I have had energy like I haven’t had in months. Arm doesn’t hurt (jut tingles). And I got up and jumped on a to-do-list that must be 6 months old if it’s a day.

I hope this God thing becomes a regular thing. I may end up paying for this later but I am going to enjoy every second of it.

Let me give you a run down on this week at CTCA. Dr. Castro, who is with “Quality of Life”, was my hero this week. My arm was hurting so bad and she came to my rescue during infusion and gave me morphine to stop the pain immediately and she changed my meds to a type that works on the nerve to stop nerve pain instead just covering up the general pain. This nerve pain med takes 4 or 5 days – 3 doses per day to build up in my system to take effect. But this morning (only after 2 doses) I have no pain. That is why I call today a God thing. Other than that, the time at CTCA was lighter and smoother than we have had in a long time. After lab draws, meeting with our PA to set up chemo, scheduling for the following week, and infusion we were out of there.

We did not run into Linda and Jonathan, even though we communicated on Facebook while we were there and looked everywhere to see if we could see them. Pray for Jonathan as he is on a 5x a week chemo regimen. I can’t imagine how that has to effect him.

Please continue to Pray for Gene. The last we heard, his first chemo injection was supposed to be today.

Connie an Doug I. still need our prayers. We have not been able to reach them for Doug’s exact status but God knows exactly what he needs.

There are other prayer request on the “Prayer Request” page so browse those as you have a chance.

God is so good to us and I love to be able to share what he is doing in my life. Today I feel well enough to go with Lori to pick up the kids from school for the second time, which is a milestone. This is usually way out of my capabilities.

Love all of you guys! I hope you are having a good day, too.

Sincerely,

Alan

Here We Go Again

Tonight we are packing and will be leaving out as soon as the kids are off to school. I pray this week doesn’t turn into a duplicate of last week. {CRAZY!} So far this week appears to be a quick in and quick out. No specialists, no tests, no scans, scheduled to stay on site.

I seem to be having two major side effects from chemo lately. First, and most troublesome is the pain in my left arm (shoulder, elbow, wrist). Secondly is fatigue. I have some new meds that are working on the fatigue (I was diagnosed with hypothyroidism due to radiation damage and will be on meds for it the remainder of my life. As far as the shoulder, I just can’t get relief sometimes. I have (2) strong meds for breakthrough pain that barely put a dent in it. I am using (3) different types of rubs and I have just about worn out a heating pad. Dr. Nathan has talked about giving me some shots at some trigger points to help me with the pain. He feels the nerves might be impinged farther up my shoulder/neck (sounds similar to my paralyzed left diaphragm – I wonder if we can kill two birds with one stone) and this could stop the pain above the source.  I am also experiencing peripheral neuropathy in my left arm which is making me lean more toward the nerve scenario as being the source of the pain, too. Unfortunately, my appointment with Dr. N is next week.

So I am asking this week that my prayer warriors pray for comfort, and increased energy level for me. Also keep Jonathan in your prayers along with Teena. We met these two (separately) at CTCA last week and each are fighting their own fight. Also keep our dear friend Gene in your prayers. He is doing better now and is at home. His chemo should start this week as long as his test come back OK.

Also keep Lori in your prayers. As I sit and watch her do all the things that she does to keep us floating I am more and more amazed and more and more appreciative of what all she does for me. I have said it before and I am sure I will say it again, I could not do this without her. It’s just that simple. Caregivers cannot be overlooked so also add Jonathan’s mom, Teena’s husband, and especially Jeannie, Gene’s wife to the prayer list as caregivers. I pray they will hear and understand the scripture below, cross-tattoos-272as we all should.

I lift up my eyes to the hills.

From where does my help come?

My help comes from the Lord,

who made heaven and earth. (Psalm 121:1-2 ESV)

God bless you all!

Alan

WOW What a week


What started out as a normal week became a very busy and very long stay at CTCA. Let’s see … where to start.

Dr. B, my pulmonologist was scheduled for a follow up on my biopsy / paralyzed diaphragm. He was not able to make it so we had to meet with his partner who was fully up to speed on my case. You see, Dr. B was unable to make it because he was at his own follow up Dr appointment. Dr. B was hanging upside down in a door frame making a funny video and fell, dislocating his shoulder in the process. He is such a cut up and always keeps us laughing so this is not hard for us to visualize. I love Dr. B. After finding out I was a fellow Mason, before surgery he hugged my neck and rubbed my head and told me he was going to take good care of me.

The paralyzed diaphragm (left side only) was nerve related. We just have to wait it out to see if in time will heal. Otherwise, my body can learn to compensate and adapt. Or if the symptoms become more problematic there are other options. Secondly, he wants to do a swallowing test next week. They will put me in front of an x-ray movie machine and have me swallow difference consistencies fluids and solids. This is to rule out silent aspiration (food/liquid entering lungs) due to my issues. Physical Therapy showed me several exercises to force transfer of air in that left lung to keep the air moving and reduce the possibility of developing pneumonia.

We were able to move my plastic surgeons follow up from next Monday to Wednesday afternoon to save ourselves a trip down next Monday just to meet with him. He is glad I’m off of Erbitux and hopes that things begin to heal in neck (fistula). Wound Care Specialist, Beth, is very encouraged in the progress that is being made on my donor site on my leg. She said that some may be a raised scar but at least it is healing, since the Erbitux is out.

Also, my endocrinologist asked to move her appointment from next Friday to this Friday. This added another day to stay. My thyroid meds were working but did not have my TSH at the optimum number. With the thyroid, if you are going to medicate you might as well shoot for optimum.

Staying the extra night turned out to be a “God’s timing” thing. This AM at 5:00 I woke up to use the restroom. My urine was darkly blood stained. As the morning progress it lightened up but still has a tinge of blood even now. This could be a side effect of my chemo, which is less likely since I did not respond this way the first (3) times I have had this particular mixture of chemo drugs. On the other hand, Lori had noticed on a PET scan write up that the reader noticed several 3-4 mm stones in my left kidney. My Quality of Life doctor, Dr. C, is leaning toward the stones either irritating my kidney of bladder, or possibly I had passed on and it had aggravated me on it’s way out. Either why, we are waiting to see. Any change and we will take it to a doctor here or back to Quality of Life next Wednesday.

We met some very nice people this week. First of all, Jonathan and Linda U. from AL. Jonathan is fighting cancer on his lung. Jonathan has a great God story that I will add in another post. Secondly, Teena and her husband from NC. Teena has been fighting kidney cancer for 5 years.

I am reading “The Shack” by Wm. Paul Young. I know this book created quite a stir when it came out but I really enjoy it. It’s the 3rd or 4th time I’ve read it and I enjoy how it takes some extremely complex theological issues and simplifies them inside a gripping story. In Romans 8:28-30 Paul throws put some serious meat. No milk here. 28 And we know that for those who love God all things work together for good, for those who are called according to his purpose. 29 For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. 30 And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified. (Romans 8:28-30 ESV) In “The Shack”, Young takes on this topic especially how we are to be conformed to the image of His son. The only way we have any hope of approaching this seemingly impossible task is that out of love for us Jesus made himself, choose moment-by-moment to live fully human. cross2He led a human life fully surrendered into the hands of God. Fully in relationship with God and fully in touch with the power of God. The miracles performed by Jesus were al by the power of God, after prayer, even though Jesus could have simply willed the miracle to happen. We are after all talking about the Word. 1 In the beginning was the Word, and the Word was with God, and the Word was God. 2 He was in the beginning with God. 3 All things were made through him, and without him was not any thing made that was made. 4 In him was life, and the life was the light of men. 5The light shines in the darkness, and the darkness has not overcome it. (John 1:1-5 ESV) Why would he have to rely on God to provide the power for the miracles He performed while He walked the earth? Out of undying love for you and me. That is the only way we could ever “conform to the image of His Son.”

That is a powerful love and gives us a lot to live up to. I am glad that love is God’s character and that is what we have to shoot for. As for me, I’m really trying to learn to love everyone, even those who have hurt me. Not saying I can or will forgive/forget but love can transcend.

Love to all my family, friends, prayer warriors, church family, and those that are in similar situations in their faith walk and physical walk. Please pray especially for my left lung, unknown source of my bleeding, Teena, Jonathan, Gene J. – Mr. Alabama (who should be starting his treatments next week, based on what I have heard), And especially Mara. Pray that she will see that the pain now is nothing if such a sickening revelation had come after her wedding. This was God’s timing to save her from more pain down the road.

Sincerely,

Alanred-wings-logo

P.S. (3) Detroit Red Wings over (2) Carolina Hurricane in overtime. Great game. So glad hockey is back. New goalie rules might make this season interesting when it comes to scoring.

 

 

Doug and Connie I.

UPDATE 6:26PM 11/1/2013:

Hospice doctors have informed Connie that Doug has only a few hours left. We will be updated as the situation changes and so will you. Please put on your prayer warrior cloaks for Connie and her family right now as the time seems to be drawing nigh.

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More Then We Can Handle

We have all heard the saying that God will not give us more than we can handle. I read another blog this afternoon (a pastor) and he was pointing out that this sentiment is not actually in the bible. The closest we get is that we will not be tempted with more than we can withstand (paraphrased – see 1 Corinthians 10:13). The real meat lies in the words of Paul where in 2 Corinthians 1:8,9 he talks about his afflictions in Asia. “For we were so utterly burdened beyond our strength that we despaired for life itself. Indeed we felt we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead.”

This slams me directly in one of my most constant sins, “man pride”. So many time I spout out “I’m fine.” In which Lori typical corrects me and makes me tell the truth about how I have been doing. That is when God shows up and people see how He has moved in my life. Personally, on the days when things are crashing down around me (just home from surgery, son in the hospital with collapsed lung, I can’t be there) and I’m reduced to tears because I have nothing else to give, that is when God is there with me. Assuring me it will be OK, Assuring me CAB and I will make it. After hearing that the cancer has come back for the third time and all Lori and I can do is fake being strong for each other, but really felt blowing up in tears. God was there holding us and wondering why we were faking what we felt.

When I rely on myself, my mind is too full to see or feel God’s presence (even though he is there.) I really need to work on my “man pride” and let people know more exactly where I am so they can more readily see God moving in the life of me, Lori and my family. Please help me pray for this because it has been a long time sin I have had. It predates cancer by as many years as I can add.Point to Him

I love all of you; Family, Friends, Prayer Warriors (even those I have never had the pleasure to meet, including the prayer warriors at Central Baptist Church, Henderson, N.C.), my church family, and my CTCA family.

God Bless!!

Alan

You Can’t Out Give God

I have heard this statement all my life and I have believed it for over half of my life. This week, Lori and I received a note via mail that had a check inside. The person who sent the card simply stated that after paying bills for the month, there was some left over and they knew that “you just can’t out give God.” The card ended saying that we were lifted up in prayer daily and wishing us well. We have never met the person who sent us the card. God sometimes works in ways that are mysterious or hidden to us. Other times, God just flashes like this and you can’t miss His handiwork.

God is also working on me, too, today. Since I have had the week off from chemo, I am really starting to feel a little closer to normal again. I am really glad that my thyroid medicine is beginning to help. My internal thermostat was out of whack due to radiation damage to my thyroid. I have hypothyroidism now and I would be freezing when it’s warm, pour sweat when it is cold. It was crazy. Finally, I am beginning to get stabilized. Other medicines I have been prescribed are starting to help also with my fatigue but that is only counteracting the lung issues (65% lung function). So things are relative. I am so ready to get my body back to a point where rehab can focus on stamina, strength, and range of motion.

Sorry I am really starting to ramble. So I will let this post come to an end. God bless you, God bless our anonymous benefactors, God bless those who pray for us, and those extend love to us in so many ways.

Love always,cross2

Alan

Only Constant is Change

First of all, we that know Christ know this is not ultimately true. But for all the temporal situations, relationships, etc … that we have to face while we tread this sod, it’s about as true as it gets.

Life has definitely changed for Lori and I, and within that change I can point out a hundred different ways it has changed within the main change.

One of these minor changes is what I am reflecting on now. This change has happened before and almost feels comfortable somehow.

As time passed and I healed from surgery and my body slowly ridded itself ofIMG_20130920_145145_067 Gemzar, the chemotherapy that had pushed back my cancer, my hair started to come back in. As seems be the case, my hair was different than prior to chemo. My hair was darker and wavy/curly. I said it looked like a poodle’s butt. We had to do something about that. Even a high and IMG_20130925_201902_816tight military cut could not completely rid me of the waves.

As we got our last PET and started working on what chemoIMG_20130925_210308_622 cocktail I was going to use, I knew that my hair would fall out again. It gave me pause to wonder what my hair would look like the next time (and last time) it comes back in. Would it be darker and curlier, redder and frizzy. Personally, I would prefer to have white hair and a white goatee. I feel that would be more 726px-Michael_McDonald_(singer)distinguished looking on me. Not that I am a huge fan of Michael McDonald, but if I had his hair I could do something with it.

On a more serious note, our friend Gene (Paw Paw) had rehab today. I even saw a picture of him walking up the hallway at the hospital. I am so glad to see him making some progress. Please continue to pray for him.

All this to say, life changes and is unexpected. My relationship with Christ is truly constant. I know that no matter what happens as this life ebbs and flows, that He is always there for me. In the times Lori and I have celebrated good news and the times when so much bad news has come it doesn’t even draw a tear, we know that He is with us. If you do not have this relationship please talk to someone close to you that does. Or you can reach me through this blog. If I can’t answer your questions, I have friends who can.

Please continue to pray for me as I start my second cycle next week. Pray that this is the Kung-Fu Chemo that we need to push back and kill the cancer this time. Pray for Lori as she is my care-taker, my wife, my kids’ mom, and I have no idea how she does all she does. Pray for Gene, the patriarch of the Johnson clan, sage and wise, a lover of Christ and a lover of all the people and children that God puts in his path. Also pray for our dear friends that are facing life’s changes, especially loss.

Love you guys! God loves you!

Alan

P.S. Thanks all of you for subscribing to my blog. I am over whelmed at the number of people who have signed up already. If you haven’t, at the top right side of the page there is place to enter your email and subscribe. I am trying to work away from Facebook as that is a much less efficient way to spread the word that I have added to the blog. Thanks again.

 

Subscriptions

Thanks to CJ we now have subscription capabilities. On the “Keeping Up” and “History” page, at the top right column, you can enter your email and will be notified via email when I make updates to the blog. I will continue to post to Facebook however, I will taper off as I get more and more subscribers. Please take time to add your email. I love to stay in touch with all of you.

Thank you!

Alan