The “C” Word – Day 127 Surgery follow up

Yesterday we had another follow up with the surgeon.  From the reaction, we gather that they feel George is doing stupendously.  We feel things are moving slowly – but they are more than pleased at the progress he is making.

We discussed nutrition and diet some to see what can be done to assist in getting George’s organs to function more closely to normal.  The doctor said this part is experimental and will depend on George to monitor things.  Take something out and see if it makes a difference.  Try this, try that.

Our first mini-step will be taking milk and cheese out of the diet for a couple of days.  If that works, then we maintain that for a while.  If it doesn’t, plan B will be to try some Metamucil and/or Immodium to see if that helps.   One of those three things should be of help. 

The doctor is still suggesting that George try some sort of high-protein thing once a day as well as add in some additional electrolytes (i.e. Gatorade, coconut water).  He also said he should be taking a multi-vitamin.  These are all things I have offered to him and suggested to him but he still is giving some push-back on.  Coming from the doctor (again), perhaps he is starting to listen??

The one thing that concerns George is that the largest of the abscesses is apparently not all the way gone.  He is wondering if there is something he can do to help that but he forgot to ask the doctor.  Not sure that there is anything except allowing the body time to absorb the fluid.  The doctor did not seem concerned. 

The good thing we found out is that even though the oncologist indicated that he thought the first CT scan would be in January (the 3 month mark), Dr. Bastidas said that due to the slow growth nature of this cancer that he will do it between the 4 and 6 month post-surgery period.  This would be our baseline CT scan for future “watch”.  He does not want to do it yet because there has been so much done internally to George plus the additional abscesses that to do it sooner would have to many other obstructions in the way to get a good baseline scan.  After the first year he will do one annually.

Our next appointment will be at the end of February! Whoopee!  The appointments between the oncologist and surgeon are starting to be stretched out a bit.  That sure is a nice feeling.  It has also now been about a month since George’s release from the hospital (the 2^nd time around) – and we have not had any major incidences - - so we are grateful for that.

After the appointment and after some lunch, George went on a short shopping trip.  His skinniest of skinny jeans were not small enough so I had purchased an inexpensive pair of the next size down.  He wanted to get a pair of trousers to wear to church on Christmas Eve and also a belt that fit.

This weekend I hope to get some serious baking done so I have some goodies to give people!  I got a few things done last weekend.  This is an attempt at “normalcy”!  Last weekend Steph helped me put the outside lights up.  George said that there are a couple of areas where they are drooping a little bit.  My comment, “At least they are up!”  He agreed. 

On a side note: For the past few weeks we have had to deal with George’s mom having viral pneumonia.  This has meant additional care for her as she could not go to daycare.  George’s sister spent a lot of time at the house taking care of mom during the day while the caregivers still did their morning and evening shifts.  She appears to be doing better in the pneumonia arena but this has left her very weak and unsteady on her feet.  She started back to daycare for just a few hours a day for the past couple of days – today we will try for her normal Saturday routine of about 6 hours and see how she does. Tomorrow I will be on-duty with her – and will allow her to sleep in until her body says she is ready to get up.  This house is sort of a mixed up “sandwich generation” where I care for hubby and mother in law rather than mother in law and young children.  When I went to the caregiver meeting last week and said that I also care for my mother in law who has Alzheimer’s (and laughed while I said it), they all looked at me with amazement.  I said, “Hey, at least I am still laughing!”  God has some warped sense of humor sometimes… and laughter is a glorious way of coping. 

The “C” Word – Day 114 Two Months post-surgery

November 30^th – I suppose this is a milestone.  September 30^th will forever be a major milestone every year.  For now, each 30^th of the month that ticks by is a milestone marker determining any progress made. 

George asked me last night how I thought his progress is going.  I was not sure how to answer that.  After all, I have never been through this before so I do not have anything to gauge a proper response.  Sure, he is making progress - - but is he ahead or behind expected progress?  I don’t know if anyone can measure that.

I remarked that I thought it was going much slower than I had expected.  He agreed.  Did the abscess set him back?  Was it something else?  Is this normal progress?  In his mind his original return to work date was the first of the year.  The oncologist has determined it will, at best, be February 1^st.  At this point I would have to agree.  While George can walk nearly around the block, he has to sleep afterwards.  His stamina is pretty low – so staying alert for at least an 8 to 9 hour work day would be very taxing. 

His brain is not fully “functional” yet either. He forgets things easily sometimes.  Not sure if this is due to malnourishment, vitamin deficiency or what at this point.  The fact that he is just sitting all day long with the boob tube on probably doesn’t help.  I have tried to encourage him to by giving him couple of ideas to get his brain active but he does not appear to be motivated to do so.  Sometimes it feels like I have two Alzheimer’s patients in the house.  I was not prepared for George’s memory to be like this at this point in recovery. 

‘Tis the season to decorate the outside of the house.  I am either going to have to ask for help – or am going to have to figure out how to do it myself as George is not up to attempting to do it.  Perhaps I can get him to stay outside and supervise??  This has been his job to do (mine is to take care of the inside decorating).  These past few months I have had to learn how to carry a lot of the “load” for maintaining the house, the bills, etc. in addition to doing the things I normally do.  Some things have become less important and put off for the time being.  Trying to  remember to do the things I am not normally responsible for is sometimes hard! 

After speaking with George about where he is in the recovery process and what issues he is frustrated with, I encouraged some pro-active steps.  A special seat cushion would help.  I told him to look it up online.  I told him to find one and order it up.  He says, it looks like they have them at Walgreen’s or Target. I tell him that it is easier to order it up and have it in two days then have me run around to find out if the stores actually have one in stock!  It is not like I have a lot of spare time.  Today I have to keep an eye on Mom all day – and she is not feeling well so once she is up it will require extra effort to care for her.  The other thing he needs to do is track what he is eating, how much he is eating, and what effect those foods have on him.  This will not only help us determine nutrition and calorie intake (he is still losing a couple of pounds a week) but also enable us to figure out which things do not process properly given that he has a few less organs to help them.  If he can do that, then perhaps we can meet with the cancer nutritionist to come up with a plan to get him back on track and get the most bang for his buck.  As much as I have tried to help in this area I have been pretty much a failure – and George has come to resent my assistance in the nutrition arena. 

George is tired of the constant discomfort in his body yet he has spent minimal time trying to figure out other ways to change that. (This is not to say he hasn’t spent a lot of time thinking about them – he just has not been able to come up with an adequate solution.)  I am trying to give George some active responsibility for making changes by suggesting these two ideas.

So, where do we stand two months post-surgery?  If you measure it by where we were a month ago then he is doing much better.  He is having some success with taste (there are still many things that are still not quite right) and therefore is at least eating a little bit.  He is a moving a little bit more.  He is awake more of the day.  His wounds are all closed and healing well.  He does not have any edema.  He has less bouts of nausea.  He can speak in full sentences without coughing or losing his breath – in fact he can carry on full conversations for long periods of time.  Yes, progress has been made.  There is still much more to be made, but compared to where we were a month ago, this is definitely better. 

The “C” Word – Day 55 CAREGIVER

Caring
Able
Resourceful
Educated
Generous
Irreplaceable
Vibrant
Energized
Reliable

Being a caregiver for anyone comes with a lot of decisions and responsibilities.  Being able to make on-the-spot decisions, becoming educated about the person you are caring for, putting forth your best efforts to watch out for their well-being are just a few of the things you may encounter on your journey.  Every journey is different. 

The position of being a caregiver for a spouse is very different than caring for a child, parent or other adult.  Spouses often to not like to take direction from their loved one.  It can be difficult to enforce those very things that your spouse may need but he or she does not feel up to it.  They will more easily take direction from anyone else but their spouse.

Today has been a difficult day.  George has been very sleepy due to the pain medication.  He also has been refusing to try to eat most of the day.  Given the fact that he is receiving no nutritional supplements via his IV, it is important that he take in food by mouth.  It is also important for the food to make its way through his body so that it can learn to function properly again.  Logically he knows this.  But his brain is not functioning at 100% these days.  I tell him the same thing I tell his mom when she doesn’t feel hungry, “I know you don’t feel hungry but you need to eat.”

The nurses have been busy today and rather than having two patients in side-by-side rooms they are separated.  This means that I have rarely seen a nurse outside the room able to observe through the window.  It means that I have had to be the one to be available to help George when he wants a sip of water or needs help holding his wound while he coughs or wants the bed up or down.  He has become quite adept at using the control for his pain medication as a tapping instrument against the side rail to get my attention. 

I am trying to learn what is going on with his “new” body so that I can help as much as I can, but I am not the paid professional here.  The knowledge I need is to understand what the various machines do so that I am aware if something needs attention.  It also helps me to understand how to “coach” George whether it be to move, to breathe, to eat, etc. 

And then there is advocating which is a bit touchier at times.  For instance, it is now 7:10PM and his dinner has not been served.  I know he’s not hungry and he doesn’t care.  But when I spoke with the nurse just after shift change he made it clear that we need to make sure George eats even if he’s not hungry.  At 6PM I told him that dinner had not made it and he said sometimes they run a little late.  Another nurse said she saw the cart making its way around.  How can a hospital forget to get food up to its’ patients??  I sure hope there is a better variety for George to select from because all they have sent up today is a cup of broth – for breakfast it was chicken and for dinner it was beef.  George ate none of it.  Honestly, it does not sound very appetizing.  [Note:  I finally just asked the nurse for a popsicle or apple juice which he brought right away.  We never did find out what happened to his dinner tray.] 

The care for the first two nights was phenomenal.  Lots of attention.  If there was someone in the next room they were either definitely being ignored or someone else had to step in to help because his nurse was in the room nonstop for hours getting him set up.  There is supposed to be a 2-to-1 ratio here in ICU.  But they often get called to assist in other rooms or get called away for various reasons.  So it is important to almost always have someone in the room with the patient.  For the amount of money that it costs to be here (especially in ICU), you would think that it wouldn’t have to be that way.  Don’t get me wrong, the nurses have been very kind and patient and always explaining to me what they are doing or what they are giving him and what it is for.  They know that I am interested so that I can better understand how things are progressing.  But the fact that in ICU it can be an hour or more between checks at times is a little bothersome.  I have to be the reliable and responsible person in his life to ensure that he gets what he needs and that he does what is required to get him well again.

Vibrant and energized qualities are sometimes difficult.  I got only about one hour of sleep the first night he was in ICU, four hours the second and six last night.  I can feel the lack of sleep catching up with me a bit so will try to get at least another six hours tonight and not go in as early tomorrow morning.  I need to be there to feed him because the nurses do not do that and he is not yet sitting up enough to feed himself at least in the early part of the morning. 

I can also tell that my patience is being tested because I am frustrated that he does not feel like cooperating with the things he needs to do to get well (aside from sleep) – and that is eating, moving around a little bit, and keeping his eyes open for any length of time.  I know that will get better, I am hoping for marked improvement tomorrow since he is off the high dose of pain meds.  When I left this evening he was sleeping so he won’t be pushing the button much and perhaps some of the grogginess will be gone. 

I want my husband back and I am feeling somewhat helpless to get him motivated, to want it so bad he will try hard.  The nurse tonight said that I need to remind him that he went through a big surgery to give him back his life and he needs to work hard even when he doesn’t feel like it in order to get well again.  Right now it is taking all of my energy to keep an eye on him, to coach and encourage him, to love him. 

I am so thankful for my girls who have helped make sure that I get food now and then, who have helped George a little bit and who have kept me company throughout the week.  This is not one of those “fun” experiences but they wanted to be part of this process and that means a lot to both of us. 

The C Word – Day 34 and 35 Get Away

George and I finally had an opportunity to get away for an entire night (considering this was supposed to actually be the tail end of our two week vacation, something is better than nothing).

I reserved a room for us at a quaint bed and breakfast in Half Moon Bay, about a 45 minute ride from the house.  We left home at about 10AM after a leisurely morning.  It just so happened that George’s best friend, Larry, had to do a transfer for his volunteer job (at the Marine Mammal Center in Moss Landing) in Half Moon Bay.  An extra treat that we were able to have lunch with him and spend time visiting together.

We arrived at the Mill Rose B&B at 3PM and were shown to our room.  It had a private entrance and private bathroom.  This particular room had a view on two sides, nothing spectacular, but nice.  The room comes stocked with bottles of water, sodas, a decanter of wine and also decanters of brandy and sherry.  If we were the drinking kind of person this would have probably been heaven on earth.  We are not, so though those are nice touches, they did not touch us! 

We took a nap after getting there and just listened to some music on the television.  We decided to go out for dinner and the innkeeper was able to quickly get us a reservation up at Miramar Beach restaurant.  Yummy, Coquille St. Jacques for me and shrimp for George.  We opted to have our dessert back at the inn as they provided homemade cookies and cakes for their guests as well as an ample supply of various teas or coffee. 

We left the “boob tube” off for the evening and opted to spend the time talking about whatever was on our mind – and of course what is on our mind is the upcoming surgery.  We shared a few tears, cuddled and hugged, and just had time for the two of us alone without any interruptions. 

We awoke leisurely this morning, were served a scrumptious breakfast at the B&B and then packed up to start heading for home.  We were not in a rush so we made a few short stops on the way home, even pausing for an hour at Good Samaritan hospital where a dear friend of ours is preparing for surgery tomorrow morning. 

It was a nice to get away – to just have time to ourselves with no particular agenda.  We decided to try to do more of those in the future as it is good for us.  It is good for ALL couples, but especially for those who are enduring any sort of stress. 

Now we are back home.  We are having to implement a new procedure for mom with regards to eating.  No more just serving up her meals and walking away.  We have to sit with her, turn off her television to prevent distractions, and have her eat very, very slowly, one part of her meal at a time (i.e. meat, veggies, etc.) with small sips of water in between.  Apparently right now that means spending about 30-40 minutes with her for this process.  Fortunately it will only affect us on the weekends, especially on Sundays when we have three meals to serve her.  On the “up” side, if you can call it that, we no longer have to thicken her water or beverages.  Her meals are still pureed.  So I guess it is like one step forward and one step backward.  Rosemary says mom did not cough at all last night – so maybe there is some rest in mom’s future after all.  We will be able to call that four steps forward at that point!

The C Word – Day 33 Life’s Little Rewards

Today I had the opportunity to get away from the office scene and spend some time in the out-of-doors.   The clients had an outing with the Los Gatos Rowing Club up at Lexington Reservoir.  I got to accompany them to the site and help them learn how to be crew on a 12-14 man skiff.  Six of the eight clients were totally blind – and all were totally excited to learn something new.  They provided enough volunteers to help walk them down (and down some more) a very steep hill, get them loaded on the skiff and take them out on the water for an hour and a half.  Most of them came back and could not stop talking about the fun they had.  And seeing the joy of accomplishment on their faces was really quite wonderful.  It was a great day out of the office. 

Tonight we were able to spend nearly two hours with some very dear friends at dinner.  It will be nice to be able to do this more now that we have an evening caregiver.  Wow…. To most this probably doesn’t appear to be a big deal - - but when we have literally been tied to the house for nearly a year it is a real pleasure.

Tomorrow we head out for a night away from home.  I am taking George to a Bed and Breakfast over on the coast.  We will have about 36 hours to just be away from home, get some sunshine and fresh air and just relax.  That means there will not be a blog tomorrow as I intend to leave the electronics at home.  Sweet dreams everyone.  Be back in two days!

The C Word – Day 32 New Down Time?

This week we George’s sister is training a new caregiver for mom.  This new caregiver will work from 4-8PM five days a week (Monday through Friday).  It was inevitable that more caregivers would be added to assist with mom.  George’s health issue has forced us into transitioning to the next care phase for mom sooner than we expected.  It is not unwelcome, but it is a change for everyone.   

We have been telling mom for about a week that there would be a new caregiver in her life.  She has been fighting us tooth and nails on this issue insisting that she is just fine by herself.  She has been cranky, combative, crying.  Just minutes prior to the caregiver arriving for the first time she had been arguing with Rosemary.  Then, when the caregiver arrived, she jumped up and hugged her and told her it was nice to see her again (though she has never met her before).  I call this the Dr. Jekyll/Mr. Hyde syndrome she has.  She will be gnarly with us and turn around to her caregivers and daycare and turn on the sugar.  It can be quite frustrating!

Having added caregivers will enable George and I to have a little more down time, time to go out for dinners, time to sit and relax, take a walk. It should reduce my stress level just a tad bit.  This will have more impact on me since I am the one used to jumping up every twenty to thirty minutes to make sure she has her dinner and her medications, make sure that she is not doing things she should not be doing. It is a strange feeling to have some of the load lifted.  I am not used to just sitting down in the evenings with no place to go.  I don’t know what I will do with all this extra time!  I am sure I will get used to it.   

For now it will allow me to go play my monthly Bunco (like tonight) – without having to remind George what does or does not need to be done.  It will enable us to have dinner out with friends or just go out on our own and not have to rush home. We can even run out and do some shopping!

In a few weeks it will give me the time I need to concentrate on George’s healing from surgery.  That will be my primary focal point for a while.

We are fortunate that George’s sister will be able to step up to the plate and handle the other “off hours” (8PM to 7AM) for the times that I need to be away from home or when I need the extra sleep. 

This period of time will be all about allowing others to step up and help where it is needed. In a “I can do it myself” world, this is a hard change to make.  Necessary, but still hard. There will be more changes ahead – even if there was no cancer in our world there would be more changes – and we will need to adapt to those changes in our lives like shifting sand . . . as gracefully as we possibly can.

The C Word – Day 31 Clinical Trials – What are they?

I decided to look at some other blogs today to get some ideas for mine.  I hit a gold mine in one about a young woman, young mother, who has Stage IV breast cancer.  When I clicked on her most recent link she spoke about what the various phases of clinical trials are.  Since what we are about to embark on is, indeed, a clinical trial, I found this quite informative.

I followed through by visiting the National Institute on Health website and this is what I found for definitions:

Question: What are clinical trial phases?

---

Answer:

Clinical trials are conducted in a series of steps, called phases - each phase is designed to answer a separate research question.

·         Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.

·         Phase II: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.

·         Phase III: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.

·         Phase IV: Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use.

We will be participating in a Stage III clinical trial.  It has a very, very long name: Clinical Trial of Intraperitoneal Hyperthermic Chemotherapy Utilizing Cisplatin, Doxorubicin and Mitomycin C in Peritoneal Surface Cancers.  It has been going on since August 2006. I don’t know if that is a long time for a clinical trial or not.

According to our oncologist, the research head-honcho at Stanford is not prone to believe that this HIPEC procedure (which is included in this trial) is effective.  However, it is the only game in town.  And this particular game is being played right here near our home so we do not need to travel for it. 

The good news about being included in a clinical trial is that in some states (and California is one of them), the insurance companies cannot deny payment for them.  The bad news, of course, is that we have to be part of the trial because we have cancer.  The good and the bad. 

Good:  We have a wonderful team forming and unfolding right before our very eyes, we are close to home for treatment, we will have a very good hospital involved and we expect the care there to be very good, we are in close proximity to our supportive families and friends, data collected will hopefully lead to a Stage IV clinical trial where there is even more reason for people who have this type of treatment to have more hope for their futures.

Bad:  Two words – cancer and surgery; side effect is pain, possible nausea and whatever else goes along with surgeries, chemo and pain management. 

While neither of us would choose to take this journey (if we had a choice), it is of some comfort to us that we may be helping those in the future.  And, though it is the only game in town, we are anticipating a future of many more years to enjoy life, friends, and most importantly, family.  May God grant us this wish.  

The C Word – Day 30 How I will get through this

On days like today it is easy to forget that we have something large looming on the horizon.  Getting up in the morning, getting ready for work, going to work.  Caught up in the tasks of the day I can be lulled into a sense of security feeling like all is right with the world. 

Yet, throughout the day there are still reminders that bring the focus back to the “C” world.  I have a binder of notes, business cards, lab reports, and such.  I have a list sitting on my desk of things we still need to address.  A quick glance at the calendar tells me that there are several upcoming appointments.  And there, at the tail end of the month is a quick note, “Surgery, 7:30 AM, Good Sam”. 

It seems so simple.  I know it is not.  I know that there will be some very long days and I am prepared for that on one level.  I have my Kindle for reading, my computer for writing, my yarn for crocheting.  I know how to occupy my time while I sit and wait.  I can almost trivialize what is going to happen.  That probably sounds very strange.  I think my brain wraps itself in a ball of cotton to protect itself from harm, waiting to cushion any blows that come my way.  Am I hard wired to believe in such a positive fashion?  Or am I telling myself lies in order to get through this?  Maybe it’s a combination of the two?

When I tell George that everything will work out just fine, I do mean it.  When I tell him that I can handle this, I also mean it.  That doesn’t mean that I don’t feel it will be hard, that it will try me in ways I won’t know until I get there.  It means that I will figure it all out in real time, when it is absolutely necessary to do so.

It reminds me of the time I went to a dentist out here.  I told this dentist that I did not want Novocain when he was doing simple cleanings and minor fillings.  I grew up without Novocain.  To me it was a pain in the you-know-what to get the injection of Novocain (you know, that pinch that you feel when they insert the needle), then wait for the Novocain to take effect and after the appointment the hour or two of drooling and tingling until sensation returns.  And for what?  Maybe a quick jolt of pain?  I told this particular dentist that I could handle things without the pain medication.  I promised him I would not bite him.  This poor guy spent the entire session worrying.  He constantly asked, “Are you okay?” and I would simply nod, “Yes”.  After all it is hard to answer with instruments in your mouth. ]I almost felt sorry for him and felt I should have Novocain just to put him at ease!  [ At the end of the appointment he commented, “I can’t believe you didn’t feel anything.”

My reply, “I never told you I wouldn’t feel anything, I told you I could handle it.”  And I did just that. 

It is not that I don’t worry.  I have moments where I worry (or wonder, or think) about the “what if’s” that might occur during surgery.  I wonder if there will be any decisions that I will have to make or approve throughout the day.  I hope there is not.  I hope that everything goes smoothly. 

I know that it will take George awhile to get through the first days and weeks.  I pray he remain strong and motivated to regain his strength after surgery.  I am sure that there will be times that I will get tired between making sure he stays on his meds (which might require getting up in the middle of the night) and making sure his mom is okay (meaning that she doesn’t get up out of bed more than once in a night which will set off the motion alarm up in my bedroom). 

I am grateful for two wonderful bosses who will allow me to take whatever time I need off in order to ensure that things are going smoothly at home.  I appreciate their willingness to give me some flexibility during this time.

I am not saying this will all be easy, but I know that I will be able to handle things as they come.  I try not to worry about all of that now as it may be wasted time.  I have been through much harder times.  I know that I have much support surrounding me and I hope that I am able to “let go” and allow those people to step in when I need it (and hope that I am smart enough to ask for help when it is needed).  

The C Word – Day 29 Diversion = Football

Alas, football season has officially begun.  This will provide some much needed diversion for George.  It is better when there are actually teams he cares about winning or losing!  Today we are 49er faithful fans as they play against Dallas.  On days that the teams are not among our favorites, there is ample opportunity to take catnaps.  At any rate, it is good to think about the fun things in life while we can!

With our family gone the house is quiet again.  Normally we take a deep breath and say “ah, it’s so peaceful”.  We love having the twins here, we really miss them when the leave to go home, yet we also appreciate the silence.  Not as much now as when things go quiet in the house George has a difficult time not thinking about what is coming up for him.  That’s why I am grateful for the constant deluge of football games on Sundays.  It gives him a chance to root for his favorite teams – and gives me a chance to take a nap!!  Gotta love football season!

The C Word – Day 28 Four week check-in point

It is hard to believe that four weeks has passed since our surprise diagnosis in the emergency room.  It seems much longer.  Perhaps this is due to the flurry of activity that has taken place and the avalanche of emotions which have been felt throughout these twenty eight days. 

We have gone from utter despair to cautious optimism and every other emotion in between as we have endured more testing and further evaluation by doctors and oncologists.  They, too, have gone from hopeless to hopeful.  That gives us something to grasp and use in the battle. 

The road is far from over.  We have surgery in a mere three weeks.  There will be much to endure with that and the initial road to recovery.  As part of the clinical trial there will be more tests, more waiting and more watching for at least five years and probably much farther.  But when you consider we didn’t know if we had even one year in the cue, we are grateful for five or ten or more! 

Today we experienced wonderful normal.  With the grand kids in town we have had constant energy running around the house.  Poppy (George) helped the girls build small birdhouses from kits that Chris brought with him.  It was fun to watch him share his skills with the kids. 

I spent the afternoon with the girls at The Jungle (an indoor play area) where they got to enjoy time with their cousins.  George stayed home and spent a little more time turning over some of his family financial duties to others in the family.  This will enable him to concentrate solely on battling this cancer without worrying about all of the day to day things that tend to burden us.  Once he is recovered enough he can determine which, if any, he would like to take back again. 

This evening as the twins took to singing on their makeshift stage (fireplace hearth) using their makeshift microphone (made from Tinker Toys) they wanted our undivided attention.  Poppy wanted to watch his DIY.  When he said, “Because they want to sing I have to stop my show” my reply was, “These are the moments we have talked about.  Stop and appreciate what you have sitting here right in your home!”  Touche!  These are the moments that THEY will remember… and we will too (especially when we record them!)  All we are guaranteed is today so we must remember to turn off the electronics, the televisions, etc. and take part in the living of life.  Sometimes that means doing things that we may not exactly want at that moment, or need to endure (okay, the kids are not always on key when they sing) all for the sake of being in the moment.   

Family – gotta love ‘em.  Kids – precious moments shared.  They all help ground us in the here and now.  They are a few of the reasons we live!   

The C Word – Day 27 Uplifted

That is a good word for today…. Uplifted.  Feeling encouraged, feeling good, feeling energized.

I spent part of my day taking care of me… First stop was Doc Tina, my chiropractor.  My neck has been crackling a lot lately so I knew it was time.  They told me it has been 9 months since my last visit.  I think there was at least one visit in between there somewhere.  It felt good to get adjusted!  Then I continued on to Quli, my acupuncturist.  Ah…. An hour just laying around with some needles and some relaxing music.  I think she told me she would put some needles in the “de-stress” zones. 

This afternoon we had two appointments.  The first was the oncologist.  During this visit we clarified who was doing what to whom.  I mean, we have him … and the surgeon… and the gynecology oncologist… and the general doctor.  Dr. Sheh says that he and the surgeon will be the primary points of contact post surgery although we may also see the G.O. as he is the primary on the clinical trial and he will be performing the chemotherapy portion of the surgery.  As the doctor spoke to us he noted that he was optimistic about this procedure based on what our 2007 CT scan showed in comparison with what we see today.  Ever wonder what a sigh of relief looks like?  Take a look at George this afternoon.

After seeing him we met with the palliative care team from the center.  One is a nurse, the other is a social worker/counselor.  They helped us clarify what things to be aware of while George is in the hospital and told us who we should seek while there to help handle the details of George’s homecoming.  Basically, the right people are in place at the hospital to help figure those things out when it is time.  That is good news.

We then spent over a half hour with Beth (easy name for me to remember), the social worker.  We explained that we were looking for other ideas to help cope with the anxiety and stress.  Our other therapist gave us only one thing to try…. Just take a couple of deep breaths.  I told Beth that while this may be a good thing to do, it just wasn’t George’s cup of tea as it doesn’t really help. She then gave us a couple of exercises to try.  One did involve a portion of what our other therapist said (The Stop and Take a Breath part) but her example went a couple of steps farther than that.  After Stop and Take a Breath (or two) then Observe (your thoughts, physical sensations, emotions, feelings, etc.) and give them a name, but give them an accepting name or give the name in kindness (i.e. acknowledge it without judging it) and then finally Perceive and proceed (with what is most important for me to be paying attention to right now?)  In short, Stop, Take a Breath, acknowledge the feeling (i.e. nervousness and feeling tight in the chest) and then let the feeling know that right now it is important for me to be in this moment (maybe admiring the blue sky, or the company I am with).  This is called STOP for short (as noted in the bold letters above).  That was an excellent concept for us to grasp and visualize. 

We had a good session today – we are feeling good and positive in this moment.  We are looking forward to spending time with family this weekend as our special twins will be with us.  It is hard to not be “in the moment” when they are around because they are constant sources of energy. 

Everything is coming into perfect alignment.  We are finding the right people at the right time.  We are confident that the team that is building is a good one.  They will do everything they can to physically and mentally help us through the coming weeks and months and even years.  When you couple them with all of our faithful, believing family and friends we know we have the best of the best surrounding us in tender loving arms.  We know it is because of everyone “out there” that prayers are being answered.  We cannot tell you how much your thoughts and words mean to us, there are not words to express it.  If our arms were long enough we would reach out and give you all a huge hug. 

“Our God is an awesome God”!  

The C Word – Day 26 Tears of Life

Tears... When did it become easier for them to flow?  I don’t remember doing a lot of crying while I was growing up.  Unless you count the ones that were used to manipulate my parents, (“Mom, my brother is pinching me!” “Mom, make him stop bothering me”).  Being the smallest and being a girl could have its advantages. 

I think the faucet started turning on when I got married.  I can distinctly remember crying while my friend, Ellen, sang at my wedding to Mike.  I had given Mike a few tissues to stuff in his jacket pocket "just in case".  I remember him looking over at me and upon seeing my tears he quietly slipped his hands into his pocket, retrieved a tissue, and unbeknownst to our guests, passed it over to me.  Happy tears.  I have shed tears at nearly every wedding I’ve attended since then.

After having children those tears came more easily.  Tears of joy over the birth of a child, tears of anger when frustrated by their behavior, tears of anguish when they were hurt by others.  I shed tears as I sing lullabies to my granddaughters.  Soft, intimate moments with those precious children. 

Tears of despair, of disappointment, I've had my share of those especially lately.  Wanting something so desperately that when it falls apart and slips away from reach sends tears cascading down my face. 

Tears of loss, those are the hardest.  While some of those tears are over the loss itself, most often it is tears of sorrow for the family and friends left behind.  Tears of empathy.  I know what they are going through and I relieve my own losses.  It doesn't matter whether I know the person well or not - still, the tears come. 

When things touch my heart, I shed tears.  There are certain songs that make me cry.  Mostly Christian songs... or certain hymns.  Music is in my soul and those songs reach in and tug at my most inner thoughts, desires and prayers.  They remind me that I am not in control of my destiny.  There is someone much greater than me.  In those moments my spirit succumbs to that power and my vulnerable self surfaces. He knows me as I am.  He loves me as I am.  That is powerful 

I cry when singing "Silent Night with the throngs of worshippers in a dimly lit sanctuary on Christmas Eve.  Why?  I am not altogether sure.  Perhaps it is the tenderness of the song coupled with the fact that I am with people I love dearly and am also remembering people who are no longer here to celebrate the holiday.  I also am deeply moved when the Lords' Prayer is whispered or sung with the congregation.  Soft, intimate worship experiences. 

When people touch our hearts we cry as well.  George is learning that there are so many people out there praying for him, thinking of him.  He receives notes and cards from people he doesn't even know very well.  He cries because this humbles him.  He is grateful for each of those thoughts and prayers. He cannot imagine why all of these people are praying for him, why he deserves such beautiful gestures.

Like many people, I prefer to shed my tears in private.  They might flow in the calm, stillness of the night while the rest of the world is asleep, dripping quietly on my pillow.  They might flow while I sit at my computer listening to music or writing words that yearn to be on a printed page.  It is rare that I show this vulnerable self to others.  I know it should not bother me, but it does.  Needing to be strong front, knowing I can absolutely be strong - but even the strongest of the strong have weak points, weak moments when there are cracks that break open and spew out  much like a volcano erupts from all the pressures of the earth. 

We have shed many tears these past few weeks – anger, frustration, despair, humility, fear, relief.  You name it, we’ve reacted to it, and often with tears.  But tears can be healing, they can be cleansing. Tears allows some of the pressure to be relieved.  Tears are a necessary part of our lives.  

The C Word – Day 25 Glasses – Half full or Half Empty

How one views a glass of water is sometimes how they view life and all that goes with it.

Mine is half full.  Actually, mine is fuller than that.  I have been accused of seeing the world through rose colored glasses, of turning a blind eye to reality, etc.  In other words, “too darn optimistic”.  To some degree that may be true, but I am far from being naïve.  I can see some of the bad stuff going on around, I choose not to dwell on it.  I choose to believe that things happen for reasons. That may seem rather flippant to some people.  I am not always hopelessly optimistic.  I do have fears that creep in at night, usually over stupid stuff but they eat away at me.  Maybe it was something I felt I did wrong at work, or something I said that I should not have said.  I have hidden certain feelings or fears from George and, in the past, from my mom.   Probably for the same reason, too…. I knew what the lecture would be and I did not want to hear it.  I was probably already playing that tape recording over and over all by myself, I did not need it to be reinforced. Perhaps I also did not want them to know that I was less than perfect (you would understand that feeling if you were raised in Christian Science).  Whatever the reasons, I admit that I do sometimes have fears, some valid, some not.  I admit to feeling guilty about things I have said, not said, done or not done.  I don’t like those feelings, so I bury them or cover them up.  Sometimes I eventually forget about them, sometimes I still think about them but can’t change them so there’s no point to them anymore.

That being said, though, I usually am upbeat and optimistic.  I see a challenge or a problem and I think of ways to work through it.  I start on that path.  It doesn’t always work out so I re-assess and go to Plan B or even Plan C.  This is not a direct, concise science.  I just know that eventually things will work out the way they are supposed to be so there’s not point getting all worked up.  I know, that sounds cliché.  Chalk that up to my having faith that God will get me through whatever it is that is going on.  (I probably give more credence to the “big stuff” than the “little stuff” that I tend to worry more about. Go figure.) But that thought process has gotten me through some pretty tough times as noted in earlier blogs.

George looks at things as half empty.  Plan for the worst, if you get better than that than it’s a good day.  We talked about that today.  We talked about how that can be a really energy waster, draining emotionally.  Someone that views things that way always has to be planning, re-calculating, planning, recalculated – and they forget to stop and smell the roses along the way.  It does tend to take the fun out of life at times.  There are times George and I butt heads because our ways of thinking are totally and completely opposite.

The therapist said today that George was probably hard-wired that way from the beginning.  It will take a good deal of work to overcome that way of thinking.  It will require a lot of thought and a lot of motivation to want to change. 

Today at therapy we talked a little bit about fear.  “What is your biggest fear about all of this?”  Put it into words, share it out loud.  Give it a name so you can work on dispelling it and giving it less power over you.  Good place to start.  When one has so much fear whether it be having enough money to survive or not being able to find a job or wondering if you will survive a deadly disease, that fear can be all consuming and waste so much precious time.  So take that fear out of the closet, talk about it, learn about it, then figure out a way to deal with it so you can put it aside even if it is only for a little while.  When you do that you start filling up your glass again so you will be ready when you have to climb another hill, hit another bump in the road or when life throws you another curve ball. 

 Trying to help George figure out how to cope has been difficult.  I can offer advice, I can prod and I can coax.  It is easy to give advice when it is not your life, not directly anyway.  Sometimes the message gets skewed or misconstrued along the way.  I know that telling George to figure out ways he can “get out of his head” is easier than him actually doing it.  But in my experience (and others I know), when you get out and do for others you actually make yourself feel better too. There have been times when I was feeling lousy, either physically or emotionally, and going out and doing something for another person totally takes my mind off of “me” and the bad feelings have gone away, sometimes temporarily and sometimes for good. It just makes sense to me that this would work for him too. 

Some may ask how I am coping, am I taking care of me?  My answer is that I am doing the best that I can.  I am trying to maintain my exercise schedule as much as possible.  I have a job I can go to and escape the fact that life at home can be draining between mom’s needs and George’s needs.  Those can drain me a lot at times and I do what I can to “escape” – whether it’s doing yard work, retail therapy, going to work, etc. Again, I am not being naïve. I do know what is coming.  I know there will be some rough patches.  However, I absolutely know that we will get through this with lots of love and faith.  Faith in the living water in that glass.

John 4:14 - But whosoever drinketh of the water that I shall give him shall never thirst; but the water that I shall give him shall be in him a well of water springing up into everlasting life.

Isaih 58:11  And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail.

The C Word – Day 24 Some degree of normalcy

For at least a few days and, if we are lucky, a few weeks we will get to have some degree of normalcy at home.  With surgery four weeks out we have a chance to take a breath and go about life as close to normal as possible.  A few appointments here and there but no further diagnoses looming in the air will enable us to continue to digest all that has happened and will happen. 

I got up at 4AM and went to the gym at 5, got my twice weekly workout in before the day began.  George was up and out the door for work as usual.  Nothing special happened at work, just “normal” stuff.  I even managed to reschedule a few things from my calendar – things that had to be cancelled and put off until things returned to something less chaotic and I could find the spare time for them. 

To maintain his strength, George and I take a nightly stroll around the block.  Unlike some of the blocks were I grew up that could be quite large, ours is perhaps a half mile long. Today George walked it at a pretty good clip, the best he has done thus far.  His appetite has been good although he now notices that he gets full pretty quickly.  That is due, in part, to the fact that he has masses of “jello” inside his abdomen putting pressure of various internal organs. 

All in all, today was a good day.  It was nice to have a relatively quiet day to just be “normal”.

The C Word – Day 23 God’s Will

We have had a number of people comment to us about the fact that we were never told about the small, calcified growth found on the small bowel back in 2007 and the fact that the radiologist had suggested, at that time, that this should be further explored with a full CT scan.  The reactions have been from those of pure anger and rage to surprise that the doctors let it slip through or maybe even never saw this scan. 

We had a lovely conversation with our dear Christian friend, Dinah, yesterday.  She is the one I have spoken of in the past when who, after a tragic turn of events ended up with husband her husband going blind, responded to her pastor with “Why me, Lord?”  Her pastor said to her, “Why not you?” 

For we, as Christians, are told that God will never give us more than we can handle.  We often find that hard to believe, we struggle with life’s situations, we do battle with the Lord’s will, we do not always enjoy God’s timing or His sense of humor.  In hindsight, though, we often find that we have grown tremendously during those struggles and have figured out how to rise above and conquer the trials that befall us.

Dinah shared some profound thoughts about why it was that the 2007 scan went unmentioned, untreated, and so on.  She said that “back then” our choices for treatment would have been minimal at best.  Finding an experienced surgeon in our locale would have been more difficult.  In fact, the surgeon who will be performing the surgery had only entered into clinical trials with this disease in 2006 and in 2007 would have had limited exposure and practice with this HIPEC technique. 

So, while it is true that George’s condition continued to grow and spread in seven years, it is truer still that this procedure has become more widely known, improved upon and the surgeon now has eight years of experience under his belt.  Those are all things that improve the odds of a more successful treatment. 

The fact that we are able to provide the surgeon a CT scan from 2007 so he could actually note that the changes have occurred slowly and can verify that this is likely a low grade cancer is a plus.  Nothing can change the fact that there is cancer, and it’s not a good one, but the odds for improved health and prolonged life have become better with the passage of time.  All things happen for a reason – all things are revealed when they are to be revealed.  Had George not gotten another kidney stone we would not have knowledge of this disease and, had it been allowed to progress much further the odds of survival would have grown increasingly lower. 

God’s Will and His wisdom?  His hand is written all over this script.   

The C Word – Day 22 “Get to”

On the way home from Roseville yesterday, there was a lot of time to think.  For me it was thinking about the party going on in Wolcott at the same time we were driving.  It was also thinking about the other two events taking place this weekend that I will be able to Skype or Facetime with and at least see some people face to face – even if it is with just a computer screen. 

A thought came to me then.  It was something I had heard a long time ago and have heard a few times over the years.  It has to do with attitude.  It is a simple way to make you put things into perspective and give things a positive spin.

It goes like this….  Replace your thoughts and statements that being with “HAVE TO” or “SHOULD DO” with the words “GET TO”.  I will try to adjust my attitude using this process.

Instead of “I have to stay home right now”,

  I GET TO stay home, a home that I have earned, that I have spent hours making it comfortable, with a yard that is pleasing to the senses both visual and auditory. 

Instead of “I have to stay here to help George”,

  I GET TO stay here with George.  I get to have time to spend with him, to love him, to help him. 

On days that I may struggle getting out of bed because I am tired, rather than “I have to get up and get ready for [work/workout/appointments]”,

I GET TO go to a job/gym/doctor and am glad that I have these places to go to.  There are many people who cannot do these for various reasons.  I am blessed to have them available to me.

And, while I did not get to go to see my college roomies this weekend, I did GET TO use some wonderful technology and share with them just as if I was in the same room.  We shared some laughs, reflected on old times, caught up on today times, and loved one another just as we did those 30-aught years ago.  Tomorrow I will do the same with my family.

A quote by Charles R. Swindoll: “Life is 10% what happens to you and 90% how you react to it.”

Mahatma Gandhi says, “Keep your thoughts positive because your thoughts become your words. Keep your words positive because your words become your behavior. Keep your behavior positive because your behavior becomes your habits. Keep your habits positive because your habits become your values. Keep your values positive because your values become your destiny.”

The power of positive thinking has proven valuable over and over again.  When one thinks negative there is so much energy (not to mention time) wasted that cannot be gained back. Sometimes it takes a little effort to stay positive, but it sure makes things easier to swallow, especially when going through difficult times. 

Today I GET TO choose how I live my life. My goal is and always will be to remain as positive as I can.  I will not always succeed, but that is my goal.  It has helped me survive those things, those glitches in life that try to bring me down.  Today I GOT TO share with some very, very dear friends.  Thank you Linda, Sherri, Olenka and Daria for making my day so special.  Thank you for being a part of my life, a very special part.  We may not see each other often or even talk to each other often, but I know you will always be there and I look forward to the next time we will actually GET TO be together!

The C Word – Day 21 Taking a Breath

Today marks three weeks since we went to the emergency room for a kidney stone and emerged with the diagnosis of cancer.  It has been a long, arduous three weeks.  When you think death is staring you in the face you start facing a lot of other fears. 

For me, it was not so much as fear as figuring out things like: how will the girls and the granddaughters react; how will I comfort these people; are all of our legal documents in place for ease of transition; how can I get George to enjoy the here and now moments; how will I enjoy this house if he is not in it.

For him, he was paralyzed in fear.  There was nothing that you could say or do to ease that.   He was afraid for me and wanted to know I would be alright.  He was afraid of leaving people behind without him being able to care for them.  He was afraid that the doctors would wash their hands of him because he was hopeless to save with the cancer being in the advanced stage. 

The look on his face, the physical look of terror, was hard to witness.  So many tears, so many fears, overwhelmed him.

Some of the things that came up over the course of the last three weeks, the fears and insecurities, are definitely topics that need further scrutiny with the therapist.  This will not be easy as it will require him to learn how to observe a glass as half full rather than half empty.  When his whole life has been lived one way, that change will not come easy. 

In the course of my consoling him I said or did things that made sense to me but I fully admit that I am not in his shoes right now. My gut instinct told me that he would be fine, that the surgery recommended for PMP would allow him to get back to living.  My instincts are not usually wrong. When I voiced to him that I believed he would be okay, he took great solace in that but he still clung to the evil voice that had been hanging over his shoulder these past weeks.  To hear from the surgeon yesterday that they can go in and do battle with this disease, that gave him his greatest hope. 

With surgery scheduled for one month from now, we have some preparations to do and we still should tackle some of those legal and financial things to ensure all is in order.  These are mostly things we just need to double check as we have our wills and trusts in place already.  It never hurts to double check or make adjustments (that is my word of wisdom for anyone out there who doesn’t yet have such things).

For today, we are going out and enjoying a day with the granddaughters (and their parents, of course).  This will be George’s first visit to their new house.  A barbecue in their beautiful back yard.  A day off from this “C” world.  Breathe in, breathe out, relax, enjoy.  

The C Word – Day 20 Never give up hope

Today I awoke with a Twila Paris tune in my head.  She sings, “He (God) will never give up on you, and neither will I”. 

Today we met a surgeon, Dr. J. Augusto Bastidas.  George awoke with much trepidation.  So much fear that the news would not be good.  We arrived and were greeted by his nurse, Diane.  She and I have spoken a couple of times this week and she has been very reassuring.  We handed her all the paperwork, the CD of the CT scans, and test results.  She was pleased to see how organized I was in having everything at the ready.

The doctor came in and asked a few questions to get to know who George was, his living situation, his job, etc.  He then proceeded with what cancer is and what the various modes of treatment are for all of them.  Then he told us about our particular cancer and what the best treatment would be.  As expected, the cytoreductive surgery (CRS) with the heated chemo (HIPEC) is the best course.  He is one of only two locations that perform this surgery, the other one being Kaiser.  He knows Dr. Sugarbaker and is very informed about his procedures.  The procedure is still considered clinical trials and Dr. Bastidas has presented papers on his findings during the first three years of performing these surgeries.

He looked at George and said that the fact that nutritionally he looked to be in good health that there would be no problem having the surgery done.  He showed us parts of the CT scan and explained things that we asked him.   Because the cancer is a slow growing one, once he has surgery he will need to be checked out annually in what is called “Watch and Wait” as there may be a time in the future that the surgery would need to be repeated.  It could be a few years, eight years, ten years or even a matter of months. 

Today George cried happy tears.  Tears of relief.  Tears that there is an end, of sorts, to this nightmare.  We have surgery scheduled for September 30, 2014.  Surgery will be approximately 10 hours, hospital stay is 10-12 days unless there are any complications.  Back to work in 2-3 months.  They may need to remove partial other parts but they won’t know that until they are in surgery.  That’s a road to cross later.

For now we are seeing evidence of the faith that all of us have been showering on him these past 3 weeks.  Faith that things will work out.  We are blessed to have so many people with so many prayers around the world.  While we are not totally out of the woods just yet, there is much to hope for.  George is smiling today for the first time in weeks.  We even went out to movie.  That is the closest thing to normal I have experienced in a while.    We will have more of that before the next phase of dealing with this “C” word. 

Neither will I (only partial of the song here)

I heard your name today
I heard it from a wiser voice inside
And it broke my heart

I got down on my knees
Reminded that the Father of your soul
Has been the One to care the most

And He is there to lift you up and hold you close
His love is strong, so strong

And He will never give up on you
And neither will I, neither will I
Know that we still believe in you
And if you will try, if you will try again

He will never give up on you
And neither will I, neither will I, my friend

Keep walking on
And keep on looking straight ahead
And when you feel like turning back
Turn to Him instead

He will never give up on you
And neither will I, neither will I
Know that we still believe in you
And if you will try, if you will try again

He will never give up on you
And neither will I, neither will I, my friend

Songwriter
Twila Paris

The C Word – Day 19 Down but hopefully not out

I awoke in the middle of the night having a strange dream.  It involved George’s mom and the details are just weird and not something I can or should put into print.  As I tried to go back to sleep my mind started wandering.  A song came to mind and now, for the life of me I cannot remember what it was.  Then I started thinking about the fact that today was the day I was supposed to start my vacation.  I had planned this trip for a year and a half.  I was the one that actually got the ball rolling on the 40^th high school reunion and helped as much as I could from across the country.  I also managed to plan a full out reunion with my college roommates.  I know I was looking forward to that the most.  Even a family reunion.  To not be able to go has been devastating for me. I will never, ever be able to recreate this chain of reunions again.  I would be lucky if I could make even one of them happen again.   

I feel selfish feeling this way.  I mean, George is fighting a battle right now not only physically but mentally.  He had a rough day today – in part due to how I was feeling.  This whole thing affects more than him.  We all hate it.  Hate that we have to deal with it.  Hate that this “C” word has intruded on our lives.  Hate how it is ruling us right now.  It is normal that we are all going to have rough patches – and as hard as I want to be strong, once in a while I am bound to falter.  Today as that day.  Tomorrow I will buck up and face whatever lies ahead. 

Tomorrow we meet a surgeon and pray that he says he can help and he has hope for George.  George needs to hear that.  He needs to hear that someone (besides me) feels that he will be fine…  Though there is no cure, it is treatable and survivable.  He needs to hear those words from a doctor.  If he hears that he will fight harder.  Right now, though, he is terrified and there is not much I can say or do to ease that terror.  It hovers around him, weighs heavily on him.  I pray for positive news tomorrow.

The C Word – Day 18 Making lists

I am always making lists.  Menu and grocery lists.  Housekeeping lists.  Lists at work for who to call and what to do each day.  I think I have been making lists for a long time as it helps me to focus on what I need to remember to do as I can get easily distracted.

I never thought I would be making these kinds of lists…

… legal paperwork – being sure trusts are up to date

… banking – making sure the right accounts are put under the trusts

… lists of who will be doing what over the next few months

… questions to ask the oncologist, the surgeon, the chemotherapist

… lists of actions that need to take place before surgery… after surgery… hospital bed?

… notes to remind to add to lists or make new lists.

What?  When did my life go from the mundane to the life changing sorts of questions?  Every day the need to write down lists of new thoughts or questions comes into play lest we forget to remember something or ask something.  Lists are harder to make when here are so many nuances or when you are not sure what the next appointment will shed light on or if things will go in a totally different direction.  Lots of uncertainties so you try to figure out what those might be and add them to one of the myriad of lists. 

Today we were able to pick up copies of all of the CT scans, the 2 most recent ones and one done back in 2007 when George had a prior kidney stone.  Of note was the fact that the radiologist had suggested that further CT scans and tests be done because they observed a 4mm calcified growth near the small bowel.  Interestingly, this was never discussed by anyone in either the emergency room or with the general doctor.  We are not even sure he ever saw the scans as the kidney stone went away.  This growth is nearly doubled in size though still relatively small as growths go.  The oncologist said that this verifies that whatever is going on is happening at a very slow rate.  We have that “on our side” – that decisions we make are not critically urgent so we can review information, doctors, etc. and not feel the pressure that this needs to happen yesterday.  We do, however, want to get this taken care of and sooner than later as it weighs heavily on us (especially on George).  As he puts it “I just want this nightmare to be over.” 

I am confident that all of the prayers going on all over the world are leading us down the path we must take.  It will place the right doctors in our path and the right treatments for the best results will happen.  While this is a nightmare, we have had some very nice people to deal with thus far and I have no reason to believe that the rest of this journey will be filled with them as well.  My confidence will need to carry George through all of his doubts in his journey.  I pray that I can remain steady and unwavering in faith as we continue to walk this road.