New Pain and Brain Drain... Accepting My Limitations

Since my last blog entry I have started to experience some fairly intense pain in my neck and shoulders.   Vicodin helped, but I started to have some itching episodes and had to switch to a combination of tramadol for pain management and cyclobenzaprine for muscle spasms.   They are helping with the pain, but .  unfortunately they cloud my cognitive functions and make any slightly complex decision making a monumental task.   I was already dealing with the "chemo brain" effects (short term memory lapses and unstable emotions), so this new complication and remedy have made it necessary to accept these new limitations and ask to be relieved from a new project at North Coast.

There was a very good article recently in the newspaper titled "Life after Cancer" that hit  home with me.  Here is some of what it said about two common long term side effects of chemo and radiation therapy:

On Fatigue -  Many people know that chemotherapy treatments can cause profound tiredness, but they may not realize that fatigue can persist in some survivors for years.   "We're not entirely sure, but it may be due to unchecked inflammation in the body," says Dr. Patricia Ganz, a professor at UCLA School of Medicine.  Treatment could possibly push the immune system into overdrive, and in certain patients, the resulting inflammation could increase fatigue "as if the body were fighting off a bad flu," Dr. Alfano adds.

On Pain - Radiation and surgery may also leave a patient with scar tissue, leading to tightening of the skin's surface or internal adhesions. "Many cancer survivors need pain control," Dr. Ganz says.  "They need palliative care like you get at the end of life.  Only here, they're not dying and suffering - they're living and suffering."

I'm hopeful that the fatigue and pain will subside in the not to distant future, but I'm also trying to keep an attitude of acceptance that this may continue on for some time and that I need to take it easier than my nature wants to.

Onward and forward in God's Light, One Day At A Time.

CT clear again

I had two doctors' visits yesterday, one to go over my most recent CT scan, and the other for a simple exam and discussion about any side effects I have been experiencing.  Both doctors were very encouraged by my "progress" and expressed that I was doing great at this point (6 months since my last treatments) of my recovery.

I weighed in at 147 lbs and my "vital signs" were all good.  They both expect that my dry mouth will improve with more time and my sense of taste will continue to get closer to normal again...with time.  The neck and back pain did not seem to be of particular concern for them.  "Continue with Tylenol and, when needed,  vicodin at night with a side of benedryl  for the itching reaction to the vicodin."  Fatigue is to be expected and within normal expectations for now.

Though encouraged by the MDs very positive remarks, I have to wonder what "not good" must be like for those who have gone through this treatment regimen.  But then as I think about the folks that shared the waiting room with me, I get a bit of perspective into what these doctors see every day and how the "not so good" patients look.  The physical, emotional, and spiritual distress that they are experiencing.  Honestly makes me a bit guilty for thinking that my progress isn't where I wish it could be.  There really are some very sick, very weak, and very depressed people hearing devastatingly bad news about their CTs and being told that their prognosis isn't good.

I am so thankful for my family and friends who have been wonderfully encouraging and incredibly  tolerant of my sometimes childish impatience with my "slowly improving" recovery.

Perspective is a humbling teacher.

Onward and forward, one day at a time.

Dave

2 steps back...

The thing about recovery is that it isn't linear or always predictable, especially after getting infused and radiated with stuff they used at Hiroshima.   Interestingly enough, when Deanna sat in with one of the radiation therapists (behind the lead reinforced wall)  one morning during a treatment session, he noted to her that much of what is known and used by today's oncologists regarding dosage etc. was learned by studying survivors of Hiroshima a Nagasaki!  Thought provoking to say the least.

It's been 5 weeks since my last post and my current physical status has changed somewhat...not all to the good.  My energy continues to ebb and flow, mostly better in the early morning and then tanking close to lunch time.  After a nap I'm better for a couple hours and then I'm pretty much done for the day and have to just rest.  I've been experiencing some real weird, and pretty gnarly, back and neck pain that intensifies as the day progresses.  I've been back to Vicodin again some nights at bed time to be able to sleep.  Thank God for Deanna who always offers a back/neck massage nightly.  My incredible kids got me a massage chair for Father's Day!

Saturday's present the biggest challenge because I lead worship and need to be the "guy folks look to" for encouragement and, at times, spiritual comfort.  I'm so thankful that my voice is back(well mostly) and I get to sing songs to our Creator and for our congregation of worshipping folks.  It is almost overwhelming at times to be able to use that gift for His purposes.  God's spirit soars in us when voices sing in perfect three part harmony.  Here's a thought for my unbelieving friends - outside of pure spiritual value can music exist for?   I'm sad for those who just don't get this.

Onward and forward in His Time and for His Will

Dave

Reeeecoverrrreeeey...

It is said , "never pray for patience" because God will answer that with plenty of opportunities to practice.  So I am taking that advice and just praying daily that God helps me to not be a jerk with others while this "too slow" recovery process takes it's course.  

While admitting that I would be glad if my energy would come back to something closer to pre-treatment levels, my back and neck would quit barking at me,  and my mouth would produce some saliva again, there are many things to be thankful for.  I try to keep a mental list of those things to remind myself throughout the day that I am truly blessed and that all "suffering" in this life is temporary when viewed with an eternal perspective..

I visited a naturopathic doctor a few weeks ago and was given some gnarly tasting supplements.  Three of them were in liquid form and were to be taken in droplets under my tongue.  Not only were they bitter to taste, they caused the nerves in my teeth to scream "are you crazy!?".   I was advised to discontinue my use of caffeine and to stop drinking Ensure.  After a few of days I decided that I needed the Ensure to keep my weight up and coffee to keep from getting even more lethargic.  So, though I haven't ruled out trying the homeopathic approach again at a later date, I'm going to stick with the MDs course for now.  

Onward and forward...ONE DAY AT A TIME.

PET Scan clean...No Doctors for 4 months!

Deanna and I met with Dr. Mell today to go over the results of a PET and CT scan I had this past Monday.  He said that it showed that the tumor was gone and that there was no evidence of cancer cells in the reading.  Those are the words we have been waiting to hear after the last 6 months of diagnosis, surgery, chemo and radiation treatments. 

My next scan will be in August and I won't need another doctor's visit until after that scan.

I'm looking forward to gaining strength and energy as the weeks progress.  Physical therapy is helping with my back and neck strength.  I am visiting a Naturopathic doctor Monday to discuss nutritional strategies to enhance my recovery.

I continue to enjoy each opportunity I get to praise God for His grace and mercy.   Worship has a richer meaning these days.

Dave

Physical Therapy for lost muscles...owch!

I was referred to physical therapy to help restore muscles (like I had a bunch in the first place) and have been to three sessions.  After the first one I was really, really sore,  but things are looking better after another two.  My neck and back have been weak and sore for several weeks and the stretching three times a day seems to be helping.

Deanna has been so good at offering to massage my back and neck every night and she's learned to find the knots and work them loose.  I have also received a couple of good chair massages from Lynn T. who has been working diligently in classes to earn a massage therapist certification.

My sense of taste is improving slowly as weeks pass.  My mouth and throat are still very dry so I'm taking some medication that might help with that.

I was able to lead (sing) three songs at our Country Gospel  worship service.  It was not easy and after two services I had to go home and "crash."  This was a a huge step for me considering that 4 months ago I didn't know if I would be able to sing again at all.  God is good and I know there have  been hundreds of good folks praying for me.

Next week I receive a PET scan and the results should show weather the cancer is gone...or ???  Keep praying please.

Onward and forward with God's grace and the prayers of many loved ones.

Spring Fever!

Deanna and I are taking a road trip  to Peoria Arizona today to watch a couple of Padres spring training games.  Spring training is the time of year when the young and still eager to excel rookies mingle with wizened injury healing veterans.  The games are played with a freshness and joy that comes from unbridled abandonment to hope for great things to come in the season just ahead.

My favorite time of year has always been early spring when "all things are made new" and budding life is showing itself in childlike splendor all around us.  Withered dreary browning plant life is decaying into mulch from which the the roots of new seeds and bulbs take nourishment.   I'm hoping that the desert is joyfully blooming after the abundant rainfall we enjoyed the past month.  I'm camera ready for it!

My recovery is progressing gradually and God reminds me constantly that His time, His healing, and His renewal will come as He wills it... not as I wish it.

I am totally off the PEG tube (though the Dr. decided that I should keep it for another month as a precaution for unforeseen complications).  A small concession in the big picture.  My sense of taste is beginning to come back and I've been trying some solid foods.  Last night I had half of a chicken breast with marinara sauce.  Not bad.

I'm  thankful to be progressing in my physical recovery from a the harsh winter of chemo, radiation, and surgery.  Although I won't know for certainty weather the cancer is gone, I am hopeful for it and will continue with each day as a new creation knowing that it is all that the Lord gives us and "tomorrow will take care of itself."

Onward and forward in God's hands, timing, and mercy.

Dave

Baby Steps to recovery

"Getting Better All the Time" slowly...

It is amazing how a simple thing like being able to swallow, or talk without gagging can bring so much joy!  I can do both now and I am getting back nuances of taste.  I have not used the PEG tube for a few days now and I'm really, really looking forward to having it removed.

The biggest deal right now is the pain in my back and neck, and that seems to be getting less and less bothersome.  My energy level is also creeping up to where I can take an hour or two to go to the Church or store without my "gas" gage dropping suddenly to empty.  Getting out into the garden when the sun is shining is such wonderful treat for me now.

I attended my Growth Group meeting for the first time this quarter last Thursday.   Boy was it great to be with them again!

I have my first doctor's appointment since my last radiation a month ago...was it really a month ago?  I won't know whether they got all of the cancer for another couple of months when I will be getting either a pet or cat scan.  The lump in my neck is totally gone now, which is a good indicator that things are looking positive for future prognosis

Again...Onward and Forward in God's grace with baby steps toward full recover (I hope).

Still One Day At a Time, but back to "My Utmost"

I just started back with reading my daily devotional, "My Utmost for His Highest."  It is a daily devotional based on the teachings of Oswald Chambers that I have been faithful to for several years now.  I put it aside about 3 months ago because my spiritual side needed less deep diving (Chambers gets down below the dust and into the deeper soil of Christian development) and a simpler approach to things.  Just asking God to keep me strong enough for this day, or this moment was about the extent of my soul's needs.  Very childlike and, at times, beseeching.

But wouldn't you know it?  Chambers busts my chops right from the get go with letting me know that "God puts us through the discipline of darkness to teach us to heed Him.  Some birds are taught to sing in the dark, and we are put into the shadow of God's hand until we learn to hear Him...If you open your mouth in the dark, you will talk in the wrong mood: darkness is the time to listen.  When you are in the dark, listen, and God will give you a precious message for someone else when you get into the light.  He gives you the gift of humilation which brings the softness of the heart that will always listen to God now."

My voice is about 80% now and I've been able to get some longer periods of sleep in.  I'm back to Tylenol for pain except for a few times that my back and neck get to barking loud enough for me to take a dose of
Vicodin.  I think my kidneys are still trying to shake out the toxins.

We got a juicer so now I'm shooting jevity (supercharged formula), green tea, water, Gatorade, and beet , apple, spinach juice into my peg tube.  I drank a bottle of Ensure yesterday, but it still tastes like no flavored Maalox -yuck.  Fortunately, I have been able to drink hot green tea (with lemongrass) and that keeps my swallowing muscles in shape.

I'm looking forward to tasting things again whenever that time comes.

Onward and forward...One day at a time.

Dave

Now for the "Recovery" part of this journey

It has been a week since my final radiation and two since my third and final chemo.  So, I suppose that puts me in the "recovery" mode of this little journey.  Well...someone needs to let my body know.  I would say that the past week has been the toughest to date.  The after effects of having all that radio active material shot into my arm and beamed into my neck are like "taking a shot of malaria to kill a cold" - Bob Dylan, from "Subterranean Homesick Blues" (I think).  Very sporadic sleep, Vicodin brain, painful sore under my tongue, wierd thoughts, etc.

Yesterday Deanna mentioned that she was going to check out a desk that she saw was on sale at Target.  I thought I'd like to get out of the house (it's been a week since I have) so I said that I would join her.  Maybe not such a great idea.  When we got there we had a bit of a walk to the entrance.  By the time we reached it, I needed to sit down and rest due to light headedness.  We got the desk.  I got humbled.  I need to force more formula into my feeding tube to give my beleaguered red and white cells something to fight back with.

The Superbowl was a much needed respite from the mind numbing stuff on T.V.  Watching two incredibly gifted teams with all universe quarterbacks play such an inspiring game gave me an emotional lift.  The image of Brees with his little boy in his arms was priceless.

I'm really looking forward to getting back to "work" at the church.  We will be relocating to the new site in April or May and I am excited and anxious to do my little bit in installing the new bookstore/cafe'.  Much to do, so I've been pondering and planning, online research for fixtures and such.  Thank you God that I am privileged to part of this time in the life of North Coast!  We are so dang blessed!

Onward and forward in God's time.

Dave

Last day of radiation is tommorrow...None Too Soon.

Early this morning may have been my "low point" to date while undergoing treatment for the past 3 months, including the surgeries.  I'm not going to detail it, but I have a real bad case of "chemo brain" and this morning "chemo stomach and chemo spirit."  Last Tuesday I had my last Cisplatin infusion and I was back there (infusion center) Thursday and Saturday to get re-hydrated.

Tomorrow we "ring the bell" at the radiation center.  It's a tradition they have to celebrate the last day of radiation therapy.

Deanna is starting to get an influx of tax clients, so she is really testing the waters of burn-out.  Doesn't show it much, but she had on her "game face" today.  Amazing though, she got up at 5AM...I think, yesterday to run many miles with some friends from church.  Check out Proverb 31:10-31...she kicks that lady's butt!

Everybody's kind words, thoughts, and prayers have meant so much to us.  If I could plead one more time for a mega-infusion of words lifted to God for more strength in recovery andfaith in His healing, I would be most appreciative. 

The Wall - A Marathoner's analogy

Deanna (my wife) has run many marathons in the past few years.  Last year she qualified and ran the prestigious Boston Marathon.  One of the things I have learned from her is that there is a phenomenon that marathoners refer to as "The Wall."  The wall comes upon some marathoners (even the best) usually at around the 22 mile mark.  For those of you not up on marathon details, the race is 26.2 miles.  So, the wall hits at around the last quarter of the race.

Evidently The wall experience is a predominantly psychological thing rather than a physical challenge.  The runner begins to have thoughts of quitting or letting go of their personal goal.  Of course there is a physical aspect to this, but the best of runners overcome the challenge with their minds through mental, or even vocal self talk.  When teamed with another runner, they can also get through this period with lots of positive coaching and verbal affirmations.

For cancer treatment patients, there is something sort of analogous to the marathoner's wall. Much like The Wall in marathons those of us undergoing chemo, radiation, and surgery can become mentally challenged with self defeating thoughts and burned out with the process.  It is at this point that having positive affirmations, strong faith in a positive outcome and,  for those of us that call ourselves believers, a continued belief in the power of prayer to keep mantra of "stay strong" a reality.

I took my first dose of Vicodin,, since starting the chemo/radiation process, tonight (I did need Vicodin for a few days following both the tonsillectomy and tube insertion surgeries).  I've been okay with Tylenol to this point, but after today's radiation, the pain needs a bigger foe.  I'm tired of getting poked for hydrations/chemo  and radiated and am dreading tomorrow.  I receive my final dose of cisplatin (chemo) tomorrow morning.  The week following the first two rounds was tough.  I have only 6 (out of 30) radiation treatments left with the last coming on Tuesday of next week. 

I know that God is with me each day.  Deanna is the wind in my sails and the prayers of others instill  hope for a cure and a cancer free life for whatever time God allows me to remain on this rock in this dimension.  Life here is really precious and there is so much left to experience (grand kids, growing old with Deanna, working in my garden, travel, and music, music, music!).

Beautiful Rain, Voiceless in SoCal

I looked at the schedule for treatment this morning and see that I have 9 more rads. and one more chemo before the cycle is through- less than 2 weeks to go.  My voice is pretty much gone with occasional surprising periods of being able to make an utterance come through, albeit not with much volume or clarity.  Deanna has had to work on some response habits in order to help me from becoming frustrated with her.  I get a bit cranky with her when I try vocalizing something and she gives me the "what are you trying to say" look.  But, all in all, we are making it work fairly well.

Continuing with stomach tube feedings or gatorade (almost hourly), salt water and green tea with lemongrass gargles (at least hourly) and aquafor or cortizone cream applications to my neck regularly.  My neck has become reddish brown and itches/burns off and on. Tylenol is still sufficient for the throat pain, but I'm getting tempted to hit the hydrocodone (vicodin) on occasion.

As I've mentioned in the past, Deanna has been a rock for me though this stuff and I'm so, so grateful for that.  She is forgiving of my sometimes childish impatience and offers head and back rubs nightly...the best medicine by far.

On ward and forward trusting God, prayers, and the healing powers He has provided.

Dave

Hounds, PEG feeding, Voiceless

A friend sent me a cute card with a picture of a hound dog with an 6 inch druel hanging from it's chops.  I relate.  The past few days have been mucous overload to the point that I've not been able to sleep for fear that I'll aspirate the gunk and choke or drown.  Thank God that last night brought some relief and I was able to get some quality rest in.  I gargle with warm salty water several times a day and that helps temporarily.

I'm now strictly on the PEG stomach feeding tube.   So my day is pretty much filled with loading the syringe and slowing depressing the plunger to receive the prescribed liquid food.  It's called "Jevity" and comes in an 8oz yellow can.   The ingredients are loaded with high octane nutrients, but it sure ain't a carnitas taco smothered in guacamole and salsa with a side order of rice and beans...not to mention the Corona.

My voice left me after Friday's radiation session.  Just kind of shut itself off  like a dial on the radio.  I now communicate with Deanna using an erasable white board.

The tumor in my lymph node is shrinking...praise God!   The radiation doctor told me that the next two weeks should accelerate the process of killing the cancerous cells.

Onward and forward in prayer and faith in all of God's healing methods!

Chemo - 2 down, 1 to go

The side effects of chemo 2 are similar to #1 with the exception that I know what to expect and how long the crummy flu-like symptoms will probably last.  So I'm less anxious knowing I won't feel like this for the rest of treatment.   My throat is getting much dryer and increasingly sore.

Today was a tough test for Deanna's and my patience with some things and people at the chemo oncology center (aka fusion center)  Lot's of scheduling snafus and insurance hiccups.  I'm so glad my sweet loving Deanna can morph into a bulldog when challenged by systematic red tape and b.s.!

Onward and Forward, one day at a time
Dave

Chemo # 2 Tomorrow

I've had a 4 day break from radiation because the treatment folks took a long weekend.  They certainly deserve it.  Their days seem very intensely filled with serving  those of us who are in need of their care.  God bless them all.

My next chemo treatment - #2 -  is tomorrow morning.  They have scheduled me for some follow up saline infusions on Thursday and Friday...this because my wonderful wife's intuition after chemo #1 convinced our chemo oncologist that I had become dehydrated. Based on her observation he, without batting an eye, scheduled them  On a side note, the medical statistics show that married men have a 4 times greater  cancer treatment recovery history than single guys!   I am so lucky to have Deanna in my corner.

The radiation starts up again today (Monday) and I'll be receiving treatments 5 days each week for the next 4 weeks.  That said, I continue to focus on keeping my head in a one day at a time frame - "Why worry about tomorrow?  It will have it's own worries."

By-the-way, in regard to Deanna's last post.  While I'm wearing the radiation mask I am pretty much continually talking to God, asking Him to guide the molecules to destroy the cancer and avoid the good cells.  Oh, and they've been playing Alison krause and other inspirational type of music while I'm pinned there.  If anyone ever had the voice of an angel, I think she is the one.

Please remember to pray for us and the wonderful Drs. and techs.at UCSD.  Surely God is with us!

Onward and forward!

Dave