Soule family Update 13 October

Pam started her radiation therapy 5 October. This will be her first full week. She will continue receiving her blast of gamma rays (I almost feel sorry for the cancer cells, they don’t stand a chance) Monday through Friday until 21 November. For those that want more details on the therapy, I have provided some notes near the bottom of the post. My job search continues well and I keep getting calls and emails from people that want to feed me lunch and offer me jobs. I will probably decide in the next few days. Beau is surviving the ordeal of being cut off from his friends, regular access to the internet, and the games on his computer, but he is not happy about it. If you are pressed for time, you don't have to read any further.

 

We have established something of a routine for the visits (it is only the first week so we have plenty of time to come up with something else). I get up first. This is not new. Pamela has always thought my early rising borders on insanity. In the past, I could use the excuse that I had to attend early meetings at work. Now that I am on leave and job hunting, that excuse is not holding water with Pamela so I have been justifying continuing to up just before 0500 by saying I want to run (this is true, I do it two times per week, three when I am not playing soccer). After I run, I start making the effort to motivate Pamela to get out of bed by 0530 so we can take a walk to get her energy level up. While Pam claims to enjoy these walks, getting her out the door takes some doing, with our conversations taking the form of:

 

Pam: “I want to take a shower!”

Me: “Take the shower *after* we walk, you’ll get sweaty.”

Pam: “I am too tired. I want to sleep.”

Me: “You will feel better later. Besides, you are already up.”

Pam: “Is it raining outside?”

Me: “No, let’s get dressed and go.”

Me: “Do you have your Nike pedometer and iPod?”

Pam: “No, I gave them to you.”

Me: “No you didn’t, I put them back in your hand.”

Pam: “No you didn’t. Do I have to walk if we can’t find the sensor?”

Me: “Yes. I will just bring my sensor.”

 

And so it goes until I get Pam out the door, then the conversation changes to:

 

Pam: “You are walking too fast, I need to get warmed up.”

Me: “I can’t keep my balance at the speed you walk, which is closer to standing quickly.”

Pam: “You are walking on my wrong side!”

Me: “What is the right side?”

Pam: “You need to be on my left so I don’t veer into the road.”

Me: “Let’s turn here.”

Pam: “Do you know where you’re going? I don’t want to get lost in the dark wandering around”

Me: “We’re almost done.”

Pam: “Can we slow down?”

Me: “No, we need to keep our pace up. You slow down *after* the walk. Otherwise, it is called ‘standing.’”

 

And so it goes until we get out the door to drive to the clinic by about 0715. This gets us to the clinic just before 0800. Pam swipes her card with a bar code under the laser reader (she feels like a cereal box going through the grocery store check out some days), trundles back to the changing/waiting area outside the shielded room where the gamma ray blaster (it has some clinically appropriate name like “Omni-crom,” I would have preferred something more like “Zappo-matic,” but that would probably unsettle patients). I am not allowed to follow Pamela to the ray gun/machine. Pamela thinks this is because other patients might be uncomfortable since they have to doff some of their clothes and don hospital gowns for the scans. I think the real reason is I was asking so many picky questions two weeks ago and offered to review the emergency procedures.

 

Since I am not allowed to accompany Pamela to the Zappo-matic, I plop myself down in the waiting room and pull out all the wifi devices I can carry (iPod touch, MacBook Air, iPad), log onto the courtesy wifi, and get as much data transferred and device synchronizing done as I can stand while listening to Good Morning America gush over Shania Twain taking pictures of herself with her fans in the brief time (ten to fifteen minutes) Pamela is getting her dose. Recent web activity has included ordering iPhones, changing my disposable cell phone plan (I blew through 400 minutes much faster than I ever thought I would), and uploading pdf documents with my signature for job applications.

 

The two main side effects of radiation treatment are skin sensitivity/sunburn and fatigue. It seems early to have much impact from either, but we are watching closely. Pamela informed me today that, when she is tired, she feels it first in her forehead. This was a new revelation for me because I have never heard of someone suffering forehead fatigue and I am pretty sure it is not listed as a side-effect in any of the cancer treatment literature we have read so we could be blazing a new trail. I love my wife dearly and this cancer diagnosis and treatment have certainly brought us closer together, but I am probably losing husband style points when I start laughing about Pamela’s forehead needing a nap. Still, this is probably why her eyelids keep slamming shut when she needs a nap. It is the downward pressure from her forehead. Since I cannot easily detect forehead pressure, the first symptom I notice of Pamela being tired is the hamster-like yawns (for those of you that have never owned a hamster, these are the kind of yawn that make it look like your mouth is going to turn your head inside out!) she starts doing uncontrollably. That and the “thunking” sound of her forehead hitting her chest and her arms going limp.

 

We are still staying at a friend’s house in downtown Norfolk, but we will soon be relocating to Yorktown, near where we used to live on Bugle Court, so we don’t have to make the commute through the tunnel. While I am the designated driver for the trips to/from the clinic (otherwise I would have to put up with interminable mirror/seat adjusting and watching Pamela’s unique way of removing the wheel/break locking device), the tunnel traffic is not bad in the mornings because we are going against the flow of traffic when we go the clinic (coming back to Norfolk is another story). Moving to a suite-hotel in Yorktown will make everything much easier. It will certainly help get Pam’s forehead to bed faster if the fatigue symptoms get worse.

 

Beau is doing well despite the lack of structure (he is no longer in school and our temporary, between jobs living arrangement make it hard to plan for any vocational training). I removed access to his computer (it is stored in boxes at my parents’ apartment) because we just did not want to subject our friends’ house to the pile of scattered game CD-ROMs, dirty dishes, and partially eaten food that accumulates near it. Beau occupies himself with watching TV (Disney Channel mostly, thank goodness for small favors given all the brain melting stuff on other channels) and complaining that there is not enough (or any) food in the house. We do not have Beau on a starvation diet (he could stand to lose weight, but that is a long term challenge), but this is what he claims is the case because he does not have the food he wants (what teenager does?). One of the special treats I get when I come home from using the library wifi just after it closes at 7pm is Beau telling me how he has eaten all the food in the house and I have to take him out to dinner because the next thing on the menu would have to be the sofa. Luckily, we always discover that his search of the pantry has skipped over the things Pam and I bought for dinners/lunches (this does not look like “food” to Beau) so Beau does not have to knock on neighbors’ doors asking them to feed him. Last night, he got a little frustrated with me so he asked me where the Ax was. Pam and I both thought he meant “Axe” (the personal grooming label, shampoos, soap, colognes, etc.) until he informed us that he wanted to chop wood (in the dark) and I recognized that would be hard to do with a can of deodorant. Pam was very concerned about the safety risk presented by chopping wood outside in the dark, but I was reasonably confident that the laws of natural consequences would prevail. Besides, chopping wood outside sure beat chopping it inside the house where we are guests! I was vindicated when Beau came back in about fifteen minutes later stating that he had to curtail the wood chopping exercise because a spider the size of a sofa jumped on him in the shed. I am surprised we did not hear the screaming inside the house. This morning, Beau started making motions like he was going to scramble six eggs at once, but Pamela convinced him to down select to just three because of the risk of his arteries clogging and having to call 911 before he finished eating them.

 

The job hunting process continues to be very interesting, but sooner or later I need to make up my mind. My current approach is to say “Yes” to anyone that wants to make me an offer, especially if it is over lunch. I don't have an artificial deadline for accepting an offer, but I am noticing that most of them are about the same so I don't think waiting longer and going to more lunches are going to make the decision any clearer. At some point, you just have to jump into the pool and start swimming. I just feel sorry for the firms that will be deprived of my talent.

 

Pamela is very energized by the whole job search process and expects a full debrief of each of my interviews and the details of the job(s) offered. I have started brining a notebook to the interviews to record the details. The interviewers seem impressed that I am assiduously taking down the conversations so I don’t let on that I am doing this primarily to keep from getting into trouble with Pamela when I am going over the details with her later. Pamela has also started giving more thought to where we should be living now that we are likely to remain in the area after I retire. I am all for doing research, but I don’t want to start paying rent until after we come back from Europe in January, presuming Pamela still feels like traveling after her radiation therapy is complete. Neither one of us is pushing the idea. We are just taking a “wait and see” approach. I have told Pamela that I will modify the youth hostel accommodation plan and pace of the trip we had envisioned if her forehead needs more rest.

 

If you are not interested in reading about details associated with Pamela’s radiation therapy, you can stop reading here.

 

Pam will be getting 1.8 Gy (Gray, the SI unit of absorbed radiation dose, 100 REM = 1 Gray) for 25 days and 2 Gy for 8 days. It is hard to put this in perspective (aka “what does *that mean?”) since many dose limits are based on whole body radiation and not what we nuclear and radiation health professionals refer to as “extremities,” away from vital organs like lungs, kidneys, digestive tract, brain, etc.  Suffice to say that the risk to Pam’s health from the exposure compared to the benefit gained by wiping out cancerous cells, which are more susceptible to radiation because they are more active, in a malevolent sort of way, than healthy, normal cells. There is a lot of really good epidemiological data on the effects of acute (all at once) radiation, but the long term effects of chronic (a little bit each day) are harder to predict. In this case, you don’t see patients typically getting cancer from the radiation treatment because they keep the doses as low as necessary, based on lots of studies, to kill the cancer cells. Still, this is potent stuff. It only takes 4 to 5 Gy to the whole body (Pam gets that to an extremity in 3 days at the lower rate and 2 days at the higher rate) to cause death in 50% of those exposed in 30 days (thus it is called the LD, Lethal Dose, 50/30). I have asked enough questions of the doctor and radiation physicist to conclude they know what they are doing. The only risk I see is if the technicians/nurses don’t operate the equipment properly. I watched them the one time (I would prefer more, but I don’t think that I get that option) and have enough confidence in the calibration and built in assessment procedures that they are very likely to do things correctly. That’s my assessment.