The “C” Word – Day 271 Settling down and relaxing

We were very fortunate that the shingles ended fairly quickly.  The sores healed up within about 10 days.  George’s face is still tender so he cannot yet use his CPAP machine, but he has been managing okay in spite of that.  The only weird thing we encountered was when the MD asked if we had told the oncologist.  We were puzzled by this but did what he asked and scheduled a follow up with the oncologist along with lab work.  All involved were curious that George had a second outbreak of shingles (his first one being about 30 years ago) and more puzzled still that it was in a different location.  Apparently if you have a second outbreak it should be in the same location as the first one.  The oncologist suggested that the regular doctor do an immunological test whenever the next labs are ordered up.

An evening caregiver is now in place and after having to stay home at night because of the shingles, we are now able to get out and about for a little bit in the evenings during the week.  How nice it is to be able to come home and just make dinner and relax for the evening.  A welcome respite for me, indeed. 

I had my own health issues in recent weeks having to do with intestinal tract stuff.  So far it appears to be nothing serious - - and could actually be that my diet needs to be the exact opposite of George’s.  Mine being high fiber and his being low fiber.  I have to figure out how to “marry” these two needs and come up with a plan that satisfies both without too much extra work.  Guess I have to go back to planning out meals accordingly. 

This weekend George has resumed going out “man land” and doing some small wood working projects.  We found out yesterday that his favorite store to find good wood is closing at the end of June.  Not a happy day for him!  It is good to see him absorbed in his hobby – time certainly flies by more quickly for him when he is busy doing what he loves. I have had to go out and remind him that it is time to eat or time to come in for the night! 

And me, I get to go on vacation at the end of this week.  Much deserved and much needed time off from all responsibilities for 9 days.  I will be travelling “home” which for me is Connecticut, and visiting family and friends during my stay.  It has been nearly two years since I have had a vacation and, while I will not be able to replicate all the plans I had for last fall, I will be seeing a handful of them.  I look forward to these little reunions and visits very much.  I am sure the time will quickly fly by.  I so look forward to being able to relax and just enjoy having only me to take care of - - and come back home rejuvenated after a very stressful nine months. 

The “C” Word – Day 240 New complications

A few days ago George had a headache.  He woke in the morning and I noticed that his face looked sort of splotchy.  He also complained that his cheek hurt.  He stayed home from work yesterday because he just felt bad.

When I woke up this morning I noticed that his CPAP unit was off – he had taken it off because it was irritating his cheek.  He was concerned that he might have a sinus infection, ear infection or something with his teeth.  I told him he should call a doctor. 

By mid-morning I spoke with him again and he was still concerned.  I had to remind him that, since he has no spleen, he really needs to be proactive in his health care and make the phone call.  I figured it would be easier to get in to see his doctor than his dentist.  So he called and got an appointment.

I got a call from him after his appointment – the diagnosis is shingles.  He was so upset with that.  To top that off, the nurse said that because there was a lesion on his nose, that indicated that there could also be shingles on his optic nerve and he needed to see an ophthalmologist right away (tomorrow) to get drops to take care of that.  If he doesn’t do that he could lose some vision. 

Geesh, this is so frustrating.  Sometimes I feel like we cannot catch a break.  We have gone over two months “tethered” to the house because there is no evening caregiver for mom.  And next week a caregiver starts, but George could be down and out with the shingles.  It is in the early stages and it may take weeks to peak – but without a spleen to help fight off infection, this could be a very different bout than his previous one (more than 20 years ago). 

One step forward, one step back…. This is so hard on George.  He actually filled the prescription for pain meds (even though we have some on hand from surgery), because he remembers how painful shingles can be.  He doesn’t like to take pain meds, but he is preparing for the worst. 

The “C” Word – Day 235 Baseline Scan and Oncology follow up

On March 13th George had his first baseline CT scan.  This was preceded by a lot of varying emotions as can be expected.  Every blood test, every scan raises the anxiety level when the Big C is in the picture.

We had assumed that if there was contrast to be used it would be administered during the scan.  However, the day before the procedure we received a call that we needed to go to the hospital and pick up the contrast.  They left the message on the house phone, of course, so we did not get the message until 4PM.  George was pretty disgruntled when he heard about this.  He ran over to the hospital to pick it up… and to make matters worse found he had to drink the first bottle 4 hours before the scan - - which in our case meant 4AM!!  The second one was to be consumed at 7AM.  He did note that having this “glitch” helped some.  It made him more angry and less anxious!  Sort of a trade off!

The surgeon had said that we would probably not hear from him after the scan. He also said that he expected that the radiologist would see “stuff” as there would be scar tissue and areas that are still healing.  He noted that any questionable areas would be the areas we would watch for on future scans to determine if they are worrisome or not.  We had a follow up oncology appointment scheduled for a few weeks later and figured that if anything looked really bad we would find out then.

A week or two after the procedure I happened to log on to the hospital portal site and found that the radiology report was showing.  There are good things and bad when you can read reports online without the direction of the doctor.  On the good side you can see how things were done, maybe find things the doctor left out of his verbal report (as we discovered after reading the surgery procedures from last fall).  On the bad side you can over-interpret things and fall prey to fear with the verbiage.

In this case, there was cause for disappointment.  While we pray for NED, we saw that there are a few areas of “concern”.  These may or may not be reoccurrence of disease but for now we will not know that answer.  This is what we read:

1.  New or developing density at the tail of pancreas is identified. Recurrent disease is a differential possibility.
2.  There is nodular density identified just to the right of midline and superior to the prostate measuring 3.8 x 1.8 cm and previously measured 3.3 x 1.6 cm.  This may also reflect area of focal disease.
3.  Ill-defined density around the distal stomach is identified which is difficult to measure.  There may be additional disease in this region.  Follow up imaging may be helpful.
George looked up the phrase “differential possibility”.  According to Wikipedia the definition is: “In medicine, a differential diagnosis is the distinguishing of a particular disease or condition from others that present similar symptoms. Differential diagnostic procedures are used by physicians and other trained medical professionals to diagnose the specific disease in a patient, or, at least, to eliminate any imminently life-threatening conditions. Often each individual option of a possible disease is called a differential diagnosis (for example, bronchitis could be a differential diagnosis in the evaluation of a cough that ends up with a final diagnosis of common cold).”

What it basically means is that there are several reasons why this area shows up and they cannot rule out that it is possibly a recurrence of cancer.  I think to be safe they have to include this in the report as it basically covers their butts so one cannot go back and say “why didn’t you see this before now?”  After reading this, George’s mind was somewhat eased but not entirely.

Since we would not be seeing the surgeon for another 5 months, I asked the oncologist to speak with Dr. Bastidas regarding these three concerns so that he would be able to speak to us about them at our appointment.  This he did.  And, honestly, he did not really tell us anything that we did not already know.  It is likely that these are scar tissue formations but we will not really know until future scans are done.   

Prior to seeing the oncologist, George accompanied me to my endocrinologist doctor appointment.  I was having a thyroid ultrasound scan (routine) and thought he might like to see how that is done and what the doctor looks for.  I have two nodules on my thyroid that the doctor keeps an eye on (they were tested benign a few years back). There is apparently a third one now to keep an eye on.  The doctor is quite knowledgeable and talks in a patient friendly manner.  He knows of the oncology office that we go to and is aware that they have been purchased by Stanford.  He indicated that he is surprised that they use the LabCorp for testing and not a Stanford lab as Stanford charges more and receives more money from insurance.  Given that, we were not entirely surprised when, as we made our follow up appointment with the oncologist, we found out that the offices are moving to a new building, Stanford Cancer Center, and they will have their own lab onsite at that facility.  As patients, though, we can request to continue to use a different commercial laboratory.  Just another twist and turn as our oncologist went from being private practice to being swallowed up by Stanford.

So, our first baseline scan is done and out of the way.  While it is not exactly as we had hoped, it appears that at least for the time being we should not worry too much. The scan in September will enable us to know more about where we are at than this one did.  That being said, I think we should plan to go away on our fall vacation before we get the results back from the scan.  In that manner, we can enjoy the time off and just relax!

Health-wise George is doing well.  He has now been back to work a full two months.  Stamina is still low (per pre-surgery activity) but he is venturing out into the garage making some small wood turned projects.  We have been able to get out of town about once every 6-8 weeks just for the night, having attended my nephew’s wedding in Carmel Valley last week.  Because there is no evening caregiver for his mom right now, with rare exception we are tethered to the house 7 nights a week and have been so for about 2 months now.  We are hopeful that a new caregiver will start in about 10 days so we can relax and enjoy life a little more and get out to visit friends once again.

The next five months or so we should be “doctor free” which is nice to know.  We do both need to get in for a regular office visit with our regular doctors but aside from that there will be no cancer appointments!  Yippee!!  That in and of itself is a relief as we have had more than our share for the past eight months!  Looking forward to things calming down a bit so we can relax and enjoy things more – family time, friend time, etc.  We are grateful to have crossed a major hurdle (thanks to many, many prayers from people around the globe) and we pray for continued recovery and healing.

                                      

The “C” Word – Day 209 Vocabulary, relationships & revelations

We have learned a lot of new words in the past six months and they are becoming increasing intrinsic to us.  Every corner we turn, we see them.  We hear about them.  They bring emotions to the surface – sometimes joyous ones, sometimes frightening ones, sometimes downright angry ones.

We are learning new acronyms.  Things like:

PMP:  Pseudomyxoma Peritonei …. Cancer

HIPEC:  Hyperthermic Intraperitoneal Chemotherapy – one of the few treatments that works on PMP as well as CRS, Cytoreductive Surgery.

MOAS:  Mother Of All Surgeries.  So named because the surgery that must take place involves opening the belly and removing all evidence of disease. The surgery can take anywhere from 5-15 hours. In many cases it means taking out a number of “parts” such as spleens, gall bladders, appendix, colon and sometimes liver or parts of the stomach.

NED:  No Evidence of Disease.  Someone posting that they are celebrating five years NED.  Others posting they are praying that their next scan will show NED.  They want NED to be their BFF.  We, ourselves, are in this particular position with George having his first post-surgery CT scan last week.  We pray that it, too, shows NED.  As long as there is NED, we can keep positive thoughts and energy in our lives.  Should NED become ED, I am sure that will cast a shadow over our lives.

This last one, NED, we learned after joining a very active group on Facebook.  In order to be part of this group you have to have a relationship to PMP-Appendix cancer.  Trust me, if any one of these folk would have a wish it would be to not have a relationship to PMP.  While we may never meet the people who are “friends” on this page, having a place to go to post updates, challenges and prayers gives everyone a chance to connect and support one another throughout the journey of this particular cancer.  Because of the rarity of this cancer it is easy to feel isolated and alone as the treatment is different than that of most other cancers.  Finding others “just like you” leaves you feeling a little less isolated.

And then there is that one “small” six letter word that reverberates over and over again… CANCER.  It hangs heavy in the air at times, still has the ability to shake us to our core.  Unexpectedly it creeps in and seeks refuge in our heads or in our hearts.

It did that tonight.  We have a dear friend who has end stage prostate cancer. His name is Bernie. He and George have become buddies these past few years – all because George offered to put up a new light in their garage so they wouldn’t fall down in the dark.  Bernie is in his 90’s I believe.  He saw this act as a gift from God and every time we see him he gives George thanks and praise for his act of kindness.  Ever since then we have kept tabs on them and this relationship became even stronger after George’s surgery as Bernie called out of the blue one day to talk to George.  He asked how George was doing.  He had not heard about the cancer because he had not been to church in a while.  As it turns out, Bernie had been diagnosed with cancer as well and we had no idea.  So we make as much effort as we can to stay in touch with our friend and his wife.  We paid a couple of visits.  Phone calls are exchanged back and forth.  Bernie is in a lot of pain and discomfort and is ready to “see the face of Jesus”.  His biggest worry is what will his dear wife do without him – they have been married over 60 years.  I think if it weren’t for the fact that he is afraid she cannot live without him he would have given up long ago.  But he has been waging war with the “C” word. 

Our dear friend called tonight – presumably because he wanted to hear George’s voice.  He also wanted to let us know he was having some surgery on Wednesday and would be in the hospital for a few days.  He asked for prayers – and of course we will be praying for him. 

 Yet once the phone was placed back in its cradle all kinds of other emotions kicked into gear.  George became angry – he HATES the “C” word.  He hates what it has done to him – and to others.  Until this happened to him he did not understand how consuming this disease can be.  He hates that Bernie is in such pain.

Yet we also wonder if there was another reason that Bernie wanted to call George.  Should we be listening for the still small voice of God to figure out what it is?  A part of us is wondering if this is God’s way of letting us say goodbye to a dear friend – giving us opportunities for conversations – so that should the inevitable happen we will have no regrets about having stood by this wonderful, sweet man in his time of need these past few months.  The bond that Bernie and George share is special.  Bernie is always sharing words of God and even though he is in pain he is an ever faithful servant, giving words of encouragement to those around him.

We pray for the pain to be lifted from Bernie’s body – yet we know that this truly may not happen until he is in the arms of His Saviour.  One of his little daughters has been waiting for him for decades and he cannot wait to see her either – but he isn’t quite ready to leave his love here on earth.  He is torn between two “homes” all the time it seems.  We weep – because we love him and we feel his pain.  Every moment of time spent on the phone or with him is precious to us as we know it could be the last.

Here are some of our favorite memories of Bernie:

Hearing “Hallelujah” shouted out at the end of a particularly good hymn or song of praise at church (and then looking around the congregation and seeing people smile because they all know who it was that said it!)

Having him refer to the installation of the lightbulb in the garage as “a light from heaven”

Having him leave phone messages, always ended by him singing one of his favorite hymns

Getting wonderful, warm hugs each and every time we meet and part

George is more focused on relationships since being diagnosed with cancer.  He never realized how powerful they could be until he heard from so many people that prayed for him for those months following his diagnosis and throughout his days in the hospital and in recovery at home.  People he barely knew – many he does not know as the prayer chain circled the world. 

Like many of us, he feels so insignificant, unworthy of all the prayers – “Who am I that I deserve this attention?”

God knows him.  Just like God knows each and every one of us.  We know that God cares for the “lilies of the field” and for us who are also part of His creation.  We are not insignificant in His eyes.  There is a plan for us we just have to listen and be open to that plan when it is revealed.  God puts people in our path all the time – sometimes for a reason and sometimes for a season. 

I think God put Bernie in our path for a reason.  As I sat with George and wept with him over Bernie’s phone call, something occurred to me.  Their relationship started because of a $2 store item and a five minute job of installing a simple light bulb.  It really is the “little things” that make a huge difference to others.  While they are seemingly insignificant to us (A light bulb?), those little things can mean much more to someone else.  Maybe God doesn’t want George to take on a huge project in his “next life”…. Maybe he wants him to pay more attention to the small stuff.  Maybe he wants George to use his capable mind and capable hands to help the less fortunate with small tasks that make a huge impact on others. 

I think maybe there is something here for all of us.  My devotional today says that our real heart is revealed by what we do in secret when only the Lord is watching.  It is when we are doing the little things that do not call attention to ourselves that we receive eternal treasures.  It is in the smile we give to a stranger, the hug we give to a friend, the encouraging word we give to someone in times of despair.  It is in changing a light bulb for someone who cannot do it themselves. 

I couldn’t help but read the title for tomorrow’s devotional and realized that it, too, is sending a message to us.  It says that sometimes we forget that life is about the people and relationships that God has put around us.  We must not discount the value of others.  We need each other as friends, family or even just passing acquaintances in order to live successful lives.  The prayer reads, “Lord, help me know when it is time to drop the task and run to the relationship.” 

Hmmm… Is God using Bernie as a tool to reveal something to us?  I have no doubt about that. Thank you, Lord, for putting people in our path to enlighten us, to enliven us, to enable us to learn not only about them but about ourselves as well.  Thank you for our long time friends and for our “little while friends” (the ones who enter our lives only briefly but make an impact on us).  Help us to recognize the importance and significance of these relationships.  Amen. 

The “C” Word – Day 192 Five Months Post-Op

Today we met once again with the surgeon.  Dr. Bastidas has become more like a “friend” each time we see him.  He is very congenial, has a sense of humor, but also knows his business.  He strolls in with his white jacket, bow tie and black clog shoes, takes a seat on his rolling chair in front of George, and simply asks “How’s it going?”  He addresses any questions we have and, if needed, backs it up with research data. 

Today’s question from George:  Does the HIPEC have any residual effect?  The response was that the actual chemotherapy does not… but the heated factor does.  He noted that there was a doctor at Sloan Kettering that, from the late 1880’s up through the 1950’s, injected a ‘toxic bug’ (I think that was the term he used but not sure) into cancer patients in order to cause them to break out into a high fever.  This high fever then, in turn, used to kill the cancer cells.  These days, Dr. Bastidas is doing another clinical trial where they do a whole-body heat up during chemotherapy to help eradicate or slow down cancer cells in women who have been diagnosed for a 3^rd recurrence of breast cancer and have no other options to try.  It has been fairly successful thus far.  He said that the “heat” somehow boosts ones immune systems and kicks it up to fight the cancer. 

Also, today we have arranged for the baseline CT scan which will take place in two weeks.  George asked what should be expected of this scan.  Dr. Bastidas said that most likely it will throw red flags to whomever reads the scans.  He expects there to be visible scar tissue as well as some of the abscess which he says is quite small compared to where it was 4 months ago but is still there.  There will be spots and things that the radiologist will not be able to confirm are cancer or whatnot, but those are the areas that we will be able to watch in subsequent scans.  This is “baseline” – the starting point.  He told us he might call or email us if anything shows up but he does not need to see George for six months.  Note: By then it will be time to schedule up the next CT scan and then it will be one year between future scans. 

All in all – a good day mentally.  Physically, George is having a hard time with his back today.  He also has started to get a sore throat so is not feeling well.  Will need to keep an eye on that – and this is probably a signal that he needs to start going back to his regular doctor to keep an eye on things as well.  He hasn’t been ill since surgery and without the spleen to fight things it will be more difficult – and he will need to stay on top of it so things don’t get super bad which will make it harder to fight.  

The “C” Word – Day 175 Four Months Post-Op

The “C” Word – Day 175

Four Months Post-Op

One of the devotionals I read this week spoke of “contagious laughter”.  In it is the story of Sarah, whom God blessed with a child very late in her life.  When God gives Sarah the news that she will bear a child she laughs in disbelief.  Just as I “laughed” at what the Lord put in front of us nearly six months ago.  On that day of August 9^th, here are excerpts of what I wrote:

“I am not sure if I understand God’s humor and his wisdom right now.  I have yet to determine just exactly which one he is imparting on us right now.

Our day had started off ordinarily enough… to accomplish a few errands.  In the middle of one of those errands George looked at me with a strange face and said, “Oh no.”  At first I was thinking he forgot his credit card but he then said that he was having the start of the same kind of pain he had when he passed a kidney stone back in 2007.  Although we made it into a room  (in ER) quickly, we ended up waiting longer than the prior trip for a doctor or nurse to come in… And then we waited and waited.

The doctor finally made his way to our room …and then the next words out of his mouth were shocking.  The radiology report indicated peritoneal cancer “seeds” that had metastasized…  And just like that our lives are turned upside down..

Is this God’s sense of humor trying to make us scared and telling us that we need to appreciate what we have – because maybe it isn’t cancer, maybe it’s something else.  Maybe it will turn out to be something serious but something that is treatable and curable?  Will we laugh when we look back at this?”

Like Sarah, we wondered if we were asking God for the impossible.  Yet God asked us then as he continues to do throughout our life journey, “Is any thing too hard for the Lord?”  (Gen. 18:14)

Six months ago I wrote:  “I can only pray that this is a treatable and curable cancer as that is easier to swallow than the other option. But God has a plan…. and now we have to wait a few more days for this plan to play out in our lives.”

Just as God promised a child to Sarah and her dream became a reality, so too our hopes and wishes have become a reality.  As George continues his progress of healing, our lives become more bright, we express joy for what He has given us.  As things head more towards normal there is, once again, more laughter in the house… and this laughter is contagious.

In the devotional it says that “when Satan bombards us with lies… it is time to look back at God’s Word and remember Sarah.  Imbed in your mind the truth that with God, nothing is impossible (Matt. 19:26).  And then, in the midst of the storm, in the darkness of the night, in the crux of the trial, laugh, letting the joy of God’s truth be your strength.”  Trust that God can do the seemingly impossible. 

And here we STAND, nearly six months after our lives were shattered by the “C” word and exactly four months post-op from a life-altering surgery, stronger in faith than we were – and, for George, stronger in body as well.  As we sit in the midst of all of this, we feel like this is taking "forever" to get better, yet in the eyes of the medical professionals and those who see George they are amazed at the progress he has made.  Somehow, when you are the one living the ordeal, nothing seems to go as fast as you would like it to.

There is still a long road ahead.  We haven’t yet found out what George’s new “normal” is as it is still evolving.  While he continues to gain strength he is far from being where he was four months ago. 

Yet the next milestone will be reached on Monday when he is set to return to work.  He returns with mixed feelings because this journey has changed who he is from the inside to the outside. He is not sure if he can handle full time work but chooses to give it the good ol’ college try to find out.  After months of sitting in a recliner, sitting in an office chair for eight hours a day will no doubt take some adjusting. It will take some time for him to keep his brain turned on for the entire day, to settle in to the routine again.

But we will take each day as we have the past six months…. one at a time.  We will deal with each hurdle…. one at a time.  We will get through this next transition… one day at a time, one moment at a time if necessary.  And we will continue to pray for strength.  As we meet and beat each obstacle we will try to remember to be joyful in the morning for what God has given to us.  There will come a time when we can look back at this period of our lives… and laugh… for we have been given new life in the face of adversity. 

The prayer at the end of the devotional simply states: “Oh God, Your Word says that You will give use the desires of our hearts (Psalm 37:4).  I trust in that, Lord.  I trust in Your Word.  I believe You can do the seemingly impossible.  Help me to rest in that assurance and to laugh with Sarah, who was given her hearts’ desire.  Amen.”[1] 

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[1] Daily Whispers of Wisdom for Women, Barbour Publishing, 2008.  

The “C” Word – Day 159 Oncology update

We had an appointment with the oncologist this week.  Before every appointment there is a blood draw to aid them during the appointment.  While not all of George’s number are totally normal, they are all very close to where they should be.  Based on the last couple of readings they are still moving in the right direction.  YEAH!!  That is good news.

The doctor has signed off on George’s return to work papers which will be February 2.  I think George has mixed feelings about going back to work at this point.  While he is bored of sitting home he sort of enjoys not having to work.  He also does not know what awaits him when he walks back in the door.  The company is not known for its’ stability these days!

Each day George tries to do a little something.  A visit to see his mom.  A trip to the grocery store.  A walk around the block.  He does not require a two hour nap after he runs errands though he does get tired pretty easily.  These are “visible” signs of progress – ones George can easily measure and thus they give him hope. 

He has been sleeping better these days, not making trips to the living room to finish the night out anymore.  I have been sleeping in a separate room for the past week - a direct result of George not being able to sleep on his side so the whoosh of air from his CPAP unit is annoying to me.  I have been sleeping very well also!!  While this is not the ideal sleeping arrangement, for now it is something we are resigned to.

This weekend we will take our first overnight trip since before surgery.  It is our last opportunity while Mom is still in rehab and we don’t have to arrange for babysitters for her.  I am looking forward to getting away.  One of the days I will spend with two of my daughters as we celebrate the life of their dad who passed from this earth 15 years ago this coming week.  It is an annual ritual that we derive much enjoyment from.  George will get some much needed “guy time” with our son-in-law as well as some grandpa time with the twins. 

I will write again once George is back to work and let y’all know how that is going.  I imagine it will probably take some time to get back in the swing of things and get used to being back in the throes of the woes of work.  It has been a LOOOOONG 4 ½ months.  His coworkers who have not seen him will most likely be awestruck with his new, slim figure!  And he will tell those who asks that, although he “looks good” now, he would not recommend this “diet” for anyone!