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Day 44 – Saturday (10/06/18)

 

Next blog update will be posted by Sunday, October 14th, at midnight.

 

Hi again everyone.  This has been a very busy week, and a lot has happened.  The week started with a bone marrow biopsy.  This is common practice to check for anyone who has been diagnosed with lymphoma.  If the lymphoma has gone into the bones, it changes the cancer stage from 2 to 4.  The test was somewhat painful at certain points.  The best way I can describe the pain was a root canal for your lower back (it was really the upper part of my hip bone).  I had a root canal some 10 years ago… and this brought back memories.  Fast forward to Friday, and I got fantastic news.  The bone marrow biopsy came back negative.  This means I do not have to have another biopsy, and that I officially only have Stage 2 lymphoma.  This significantly increases the odds that after treatment, I can be deemed cancer free.  The next test I had to do this week was an EKG.  I thought going into the test, it was just your basic “put “stickers” on you, run some kind of electrical test, and you’re done”.  What I didn’t realize is this was actually an ultrasound of the heart.  The test took about 45 minutes, and the technician took about 50 screenshots/videos/readings etc.  The purpose of this test was to establish a baseline of my hearts function prior to receiving chemo treatment.  Blood work was also taken to have a baseline for all of the vital numbers.

The next big hurdle was getting my vital port installed.  I was under a wrong impression of this also.  I figured I would have IV type tubes hanging out somewhere, that the nurses would use to administer treatment.  In actuality, the port is installed completed under your skin (just below my collar bone).  In order to use it to draw blood for labs, or administer chemo, you have to “access” it.  This is a fancy piece that pokes through the skin, into the port, and has all the IV tubes hooked to it.  Then, when finished, the nurse simple pulls the piece back out, the skin heals, and the port remains hidden under the skin.  In order to install the port, it was an outpatient surgery that took about 45 minutes (in the actual operating room).  They used a “lesser” level of anesthesia on this procedure (compared to the surgical biopsy), and I woke up and was able to leave the hospital much quicker.

Friday was the big day where I actually received my first treatment.  I got a total of 8 bags of drugs/chemicals over 8 hours.  Basically, it was a bag of “side effect” deterrence, then the chemo bag.  Then another bag of “side effect” deterrence (for the side effects of the next chemo bag), then the next chemo bag.  The chemo bags were the 4 chemicals RCHOP (as discussed in the previous post).  The P is prednisone, and it is just in pill form that I take, and was not administered through the IV.  One risk that was possible was an allergic reaction to the actual chemicals.  If this were to happen, it happens while they are actually being administered.  I made it through the process with no reactions, so that part worked out good.  After all the bags were administered, they put an “auto-dosing device” on my arm.  This device is to dose one last drug 27 hours after chemo.  My understanding is this… The chemo kills off a lot of my white and some of my red blood cells.  The drug in this “device” sends some kind of signal to your brain to make your bone marrow start reproducing / overproducing white and red blood cells.  If they give this to you right after chemo, the new cells being produced would just be killed as fast as they were made.  By waiting 27 hours, the chemo should be “diluted” in your system enough that your body can start making the cells again.  The side effect of this auto-dosing drug is “bone pain”.  The nurse said that numerous patients reported that taking Claritin (yes the anti-histamine), prevented this side-effect.  Ironically, literally as I’m typing about this… the dosing device started beeping and is now administering the medicine.  They said it takes 45 minutes for it to finish.  At that point it should beep again, and I can peel it off.  It injects the medicine through a needle that felt a lot like pricking your finger to check blood sugar.

I have to give a lot of thanks to God for helping me through all the activities this week.  I was really worried about the bone marrow biopsy, because I had been told they were painful.  While it did hurt, it was not as bad as I thought.  Even more important than God helping me through the procedure, was God allowing the results to come back negative.  This was a huge psychological victory for me.  Next, God helping the surgeon with my port install, and everything going smoothly there was another blessing.  Then, as the first bag of chemo started going in, I was praying that God would help everything go smoothly and that I wouldn’t have any allergic reactions.  Again, God was there, and everything went as well as chemo can go.  Reflecting on everything so far (since they found the mass) it is clear God choose not to simply take away the mass in the form of a miracle.  Some people may ask why not.  The answer is simple.  That was not His will.  He had a purpose for me to go through this process.  That purpose may not be fully known to me at this time, but I know it includes this blog.  It includes giving me a testimony that I can use to share with others what God did for me through this process.  It includes God getting the glory in the end.  What I’m seeing right now, is that while God needs me to go through this whole process, He is also helping me with every step of the process.  There has not been one single complication so far.  All of the tests, surgery’s, chemo administration… everything has gone as good as I could have ever imagined.  I know I’m only on day 2 of treatment with another 18 weeks of chemo and 4-6 weeks of radiation ahead of me, but I have confidence that God has helped me this far, and He will help me the rest of the way.  Matthew 11:28-30 “Come to Me, all you who labor and are heavy laden, and I will give you rest.  Take my yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls.  For My yoke is easy and My burden is light”.  I feel this is what God is doing for me in this process.  He is taking the bulk of the burden for Me, and helping me every step of the way.

Dear heavenly Father, You are an awesome God.  I thank You so very much for helping the bone marrow biopsy results come back negative for cancer.  This removed a huge burden off of me.  Thank You for helping guide the doctor during the port installation.  Thank You for helping me not have any allergic reactions to the administering of the chemo.  While it was not Your will to simply remove this trial from me, You have proven faithful in helping me every step of the way.  I can’t imagine that this process could have gone any better up to this point.  I have complete confidence that as we go through the rest of this process together, on the other side, the cancer will be gone, and I will have an awesome testimony that I can share with others.  I pray that You get all the glory through this, and that You utilize me as needed to share the gospel and a personal testimony of how You helped me throughout this trial.  Again, you are an awesome God, and I thank You for everything.  Amen.

Day 37 – Saturday (9/29/18)

 

Next blog update will be posted by Saturday, October 6th, at midnight.

 

Hello blog readers.  Some of you that check in daily may have noticed this week that my posts are getting later and later, even into the next day sometimes.  Truth be told, I’m physically hurting, and some evenings I can’t sit at my computer long enough to focus and write.  I mentioned on Day 35 one of the things I wanted to talk to the doctor about was the pain in my right arm.  That pain is now “transferred”, to include both of my hips.  Whether I’m standing, walking, sitting at my desk, I have this throbbing nerve pain in my hips and right arm.  Tylenol seems to help me manage the pain at this point.  When we talked with the doctor on Friday about this (at the time, it was only my arm.  The hips started late evening today), the doctor was honestly surprised.  He said, “Looking at your scans, I’m surprised that is the ONLY trouble your having!  I would have expected you to much worse off”.  Now, he believes the pains I’m having are indeed nerve pains caused by Big Blobby B pushing everything around.  With that said, he hopes that those pains will go away, or lessen, after the 1st or 2nd full chemo cycles.  Hearing the doctors comments really made me stop and thank God.  While I thought the pain I’m having was rough, I didn’t think about it how much worse it could be.

With the above information in mind, I’m going to change the blog structure/strategy going forward.  Instead of stressing that I didn’t post, or haven’t posted each day, I’m going to start doing a weekly post only.  My plan will be to make sure that a new post comes out by midnight each Saturday.  I’ll try to jot down notes as the week goes, and do a kind of weekly summary on my health and anything God revealed to me that week.

Dear Heavenly Father, thank You for being with me throughout this process.  You have given me strength to work and keep this blog updated for 37 days now.  Google analytics show that over 500 people have visited the blog.  I feel that You are using this blog in many ways.  I also feel that You will continue to use it, even though I’m needing to change the frequency of the updates.  I pray that You would bless every reader out there, and help them with whatever struggles they may be going through.  If any blog reader does not know You as their personal savior, I pray they would come to know You today.  I thank You for all the loving, caring, praying people You have put in my life, to help me through this time.  I’m looking forward to getting treatment started next week, and pray that in 18 – 22 weeks, I am cancer free.  I pray for the bone marrow biopsy on Monday, that the results would come back negative.  Thank You Lord for all You do, Amen.

Day 36 – Friday (9/28/18)

Health Update:  Today was the big day, and I was given a massive amount of information.  I will try to summarize everything here for my benefit (and yours).

  • My chemo regiment will be 6 cycles of 3 weeks each. There will be another PET scan after the 2nd cycle to make sure things are working as expected.  There will be another PET scan after the 6th cycle to make sure everything is gone.  If there are still active cancer cells, then the regiment could be extended an additional 2 cycles.
  • After the chemo cycles are complete, I will then have 4 weeks of radiation to specifically target the large mass in my chest. The goal at the end of the chemo and radiation is that I’m cancer-free, and that blobby is dead and “shrunk”.  It is my understanding a smaller dead blobby will always exist inside of me.  It won’t complete disappear.
  • Each cycle of chemo will consist of 5 different drugs, designated by the acronym RCHOP.
    • R – Rituximab
    • C – Cyclophosphamide
    • H – Doxorubicin (hydroxydaunomycin)
    • O – Vincristine (Oncovin)
    • P – Prednisolone
  • As we go through each cycle, I will have to have labwork conducted multiple times per cycle. There are several things the doctors have to monitor for (side-effects) that can be mitigated as they occur.  Some side effects to expect include:
    • Nausea
    • Hair loss (the doc looked at my head and said “probably not a big deal for you”, haha)
    • Fatigue
    • Low blood count
    • Risk of bacterial infections needs to be closely watched
    • Bowel issues
    • Numbness in hands and feet
    • Uric Acid issues (leading to gout)
    • Tumor Lysis syndrome (Blobby could explode and dead tumor cells enter the blood stream and have to be processed).
  • The first chemo cycle is scheduled to start Friday, October 5th at 8:00am. In order to meet that schedule, there are three prerequisites I must complete before Friday:
    • On Monday I have an EKG and bone marrow biopsy scheduled
    • On Tuesday I will have a consultation for a port to be installed (to administer the chemo)
    • On Wednesday or Thursday, I’ll have an outpatient procedure to install the port.
  • Why do I need an EKG? We must establish a baseline for my current heart condition / functionality.  One of the drugs in the chemo regiment has a side effect that can damage the heart.  This must be monitored throughout the process also.
  • Why do I need a bone marrow biopsy? Currently, I’m classified as Stage 2.  If the bone marrow biopsy is positive for cancer, then I immediately become Stage 4.  The doctor feels this is low risk for me, but said it is something we must know.  He said the treatment plan won’t change if it is positive, but the prognosis changes.
  • The prognosis at this point (being stage 2) for a “Non-Hodgkin’s primary mediastinal large B-Cell lymphoma” (abbreviated PMBCL) is 80 – 85% likelihood of being cancer free and living at least 5 years past the date of discovery (data stops at 5 years). If I were to be at stage 4, it drops to 70%.  Out of all Non-Hodgkin cases, PMBCL accounts for only 2%, and is primarily found in adolescence or young adults.  Looks like I’m a pretty typical, atypical case, haha.

Well, I think that about covers it.  I may recall more (or be able to interpret the 7 pages of notes better) in time, but for the moment, I think I have hit all the high spots.  How am I feeling at the moment, emotionally?  Honestly, ready to go.  We found a problem.  We identified the problem.  We identified a plan.  Now let’s execute it (and blobby)!

Dear heavenly Father, You have not let me down yet.  There have been numerous “small” things throughout this process that You have worked out.  Knowing You helped with the small things helps reassure me that You will help with the big things.  It’s go time on the big things.  I know that You worked with the doctor to guide him in the regiment I need to follow.  I’m confident that I will go through the treatments, with You by my side, and we will come out victorious on the other side.  Thank You Lord for being in the middle of the storm with me.  Amen.

Day 35 – Thursday (9/27/18)

Health Update:  Tomorrow is the big day!  I will finally get to sit down and discuss everything with the oncologist, and establish a treatment plan.  I have several health items I plan to bring up with him.  I have played everything off up to this point as still trucking, still waiting… but there have been a few things that have been causing me some trouble.  About 10 days ago, my right arm starting hurting.  I found a spot near my shoulder blade that if I push on, I can shoot pains down my arm.  I have this dull pain 24/7.  Next, I have been coughing quite a lot… just dry coughs… like an irritation, not fluid in the lungs or anything.  Next, my heart rate stays steady between 100 and 120 all day, no matter if I’m sitting, standing, or walking.  Finally, I have been losing a lot of weight.  I have lost 35 pounds in 2 months.  10 of those pounds in the last 14 days.  This is not from lack of eating.  I have been eating double and triple portions, to no avail.  Nonetheless, I’m looking forward to tomorrow where I can hopefully get a game plan for everything.

Thought for the day:  Checkpoints / Goal Lines

How do you feel when you stand on the verge of reaching a long-awaited goal? Are you happy, sad, or relieved that the journey is nearly over? Are you frightened of the tests and trials that still lie ahead, or do you view your future with courage and faith in God?

Forty years of wandering in the wilderness had brought Israel to stand upon a mountaintop overlooking the land of promise.  Joshua 1:1-5 “After the death of Moses the servant of the LORD, it came to pass that the LORD spoke to Joshua the son of Nun, Moses’ assistant, saying: “Moses My servant is dead.  Now therefore, arise, go over this Jordan, you and all this people, to the land which I am giving to them – the children of Israel.  Every place that the sole of your foot will tread upon I have given you, as I said to Moses.  From the wilderness and this Lebanon as far as the great river, the River Euphrates, all the land of the Hittites, and to the Great Sea toward the going down of the sun, shall be your territory.  No man shall be able to stand before you all the days of your life; as I was with Moses, so I will be with you.  I will not leave you nor forsake you.””

After 40 years, the children of Israel were finally getting to enter the promised land.  They had reached the long awaited “goal” (or really in this case, served their punishment sentence).  Nonetheless, it was time for the next step.  Joshua led Israel into battle to conquer the promised land with courage, knowing God was with him.  As I enter the next phase of my trial tomorrow, the treatment phase, I also have courage knowing the God is with me.

Dear heavenly Father, thank You for filling me with excitement and courage as the doctor’s appointment approaches.  I’m ready for the next phase.  I pray that You would guide the conversation tomorrow, and guide the doctor to establish the proper treatment plan for me.  If there is anyone else who is approaching a long awaited goal today, and is nervous about the next steps, I pray that they would seek You and know that You are with them.  Amen.

Day 34 – Wednesday (9/26/18)

Health update:  I didn’t feel very well today.  I think it was the flu shot I got yesterday.  The doctor had told me I needed to get a flu shot prior to starting the chemo, because chemo lowers your immune system, and you don’t want to risk getting the flu while on chemo.  Other than that, Still Trucking.  Still Waiting.

Thought of the day:  On Sunday, our pastor asked if I could lead the Wednesday Night service, as he would be out of town.  I was glad to do it and was thankful for the opportunity to share my testimony and share a Bible lesson that God had laid on my heart.  God helped me through the 1 hour service without coughing much, and I felt okay during that hour.  I had prayed and asked God for strength prior, knowing I wasn’t feeling well.  After the service, it hit me…  It was clear God helped me in the little things, so how much more will he help me in the big things?  I’m cutting this short today, because I’m very tired and need to get to bed.

Dear heavenly Father, thank You for helping me make it through the day.  I was feeling pretty rough.  Thank You for giving me the strength to make it through the service tonight.  Thank You for allowing me the opportunity to share my testimony and heart with others.  I pray for a good night’s rest tonight, as I am exhausted.  Thank You Lord, amen.