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.