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Stephen's Health Updates

ANNOUNCEMENT:

My Health Updates are Migrating to CaringBridge.org!

This post marks two major changes in my health tracking web presence. First, as you'll see shortly, is that I'm migrating the hosting for this update page over to CaringBridge.org. They have a very nice, pre-packaged array of services for people in just our situations. As the patient, I want to update a ton of friends and loved ones. As my friends and loved ones, many of you also want to know what's going on for me through my walk with cancer. CaringBridge.org seems like a very good solution. For the moment, I'll go ahead and post a double entry of this information - here and at CaringBridge.org. There is a link below which will take you immediately to that site. In the future, I will reconfigure this page to simply automatically redirect over to the CaringBridge.org site.

Incidently, I'm initially setting up CaringBridge to require you to sign in. Please don't be put off by this. It's simple and your information will never be shared or "marketed" to anyone else. The minimal security means that I don't have to be sharing some deeply personal information with just anyone out there sweeping the web for such information. Thank you for your understanding.

You can go directly to CaringBridge.Org by clicking on their logo below at any time.

2 November 2010

Two weeks have passed since the last update and MUCH has happened, of course. The first of those two weeks was the final, hectic, run-up to the actual commencement of chemotherapy. Although much happened, I'll treat that week briefly by means of a few key bullet points.

• Friday, 15 October: AM: Labs for my primary care physician. Seeking permission to drop three marginally-needed prescription while in treatment. Goal is to minimize burden on kidneys and liver. PM: Two teeth extracted by Oral Surgeon Dr. Vincinzo Castaldo. Ouch.
• Monday, 18 October: PM: Meeting with research collaborators at UC Davis to plan (tentatively) how & what I'll be able to do over the next several months.
• Tuesday, 19 October: AM: Fasting ahead of port installation. 12:00 PM: Port Installation by Dr. (???). Planned Concious Sedation totally didn't work! I was fully awake while he worked. Here's how that went:
  "OK, is he under?"
  "Yes, Doctor."
  "OK, here we go." (Scalpel cut.)
  "Ow!"
  "You're awake?"
  "Um, yeah."
  (I can feel the blood trickle over my shoulder from the incision under my right clavicle.)
  "Nurse, give him another dose!"
  "Yes, Doctor!"
  "OK, here we go, again." (Scalpel cut.)
  "Ow!"
  "You're still awake?"
  "Um, yeah, pretty much so."
  "I can't believe you're still awake! Nurse, verify the meds that have been given!"
  "All good, Doctor, and doubled." {Pause}
  "Can you still feel this?"
  "Ow!"
  "I can't believe this. Nurse, give him another dose!"
  "Yes, Doctor." (Pause)
  (Touch-touch) "Can you still feel that?"
  "I can feel the pressure of your finger but it doesn't hurt any more."
  (Mind you, I'm supposed to be UNCONCIOUS!) (Pause)
  "OK, let's try again."
  Work work work work, pad pad, cut, cut, work work work..........
  "OK, that ought to about do it. Nurse, can you close up?"
  "Of course, Doctor."
  Just another day in the office. Somehow, I don't think patients are supposed to be THIS involved in their own surgeries. But hey, it was an interesting experience. (For more on the type of port I have, see here.) 3:00 PM: Chemotherapy training at Sacramento Clinic for Hematology and Medical Oncology. Excellent training!
• Wednesday, 20 October: AM: Meet with primary care physician's Assistant. Labs are fine, ok so suspend other meds but keep an eye on blood sugar level - < 120 fasting, < 140 2 hrs after meals is ideal. PM: In-Depth Audio Testing to determine pre-treatment baseline. Results show significant loss of high tone sensitivity in right ear. :-( Also PM: UCD Research Group Meeting - Missed. :-(
• Thursday, 21 October: What, nothing?
• Friday, 22 October: AM: Jodie off school; Jennie and Stephen to Parent-Teacher conferences 12:30 - 2:00 PM. After, Jennie with Jodie to Cross Country Meet, Stephen to follow-up appointment with Oral Surgeon, Dr. Castaldo.
• Last Joy of the Week: Friday, 5:30 PM: Left front suspension on Acura collapsed, destroying wheel, suspension parts, and left half-axel. Too costly to repair for 22 year old vehicle. :-( RIP, my friend. Now down to one car in the family.
• Saturday, 22 October, AM-PM: Packing up and vacating Folsom Blvd office of MicroDataware as cost consolidation and reflection of limited individual work anticipated over the next 6 months or so, anyway.

OK, so that was the first week. All I had to do in the second week was get chemotherapy. :-) And here, I spare you. The week wasn't especially pretty, though it wasn't grotesquely bad either. Basically, I had a lot of "really, really good" prescription medicines. So, naturally, I took them all right on schedule for the first day or two. Bad mistake. Missed the "as needed" part and totally over-did it, turning myself into something of a zombie, though, while weak as could be, not actually suffering very much. The anti-nausea drugs DO work, thank God! But convulsive hiccups? That one was a surprise, lasting about 2 days. Passing out and waking up on the floor a couple of times due to dehydration was not too fun, either. But, the week is past and I am feeling much better.

Saw Dr. Shihabi again yesterday. He is one fabulous doctor! I can't say enough good about him. He's very calming, very clear, very reassuring, very positive, all-the-while being very honest. He has a rare gift for comforting his patients. Bottom line, I'm probably at my low point right about now in this first of three chemo cycles. My White blood count is way down, as expected, of course, and I'm more susceptible to infection right now. My overall energy level has been disappointing, as well. If I'm up and active, especially out of the house, for more than an hour or two, I develop real illness with fever, headache, and stomach ache, even back ache sometimes. So my main challenge right now is to learn how to govern what I do so get something done while not putting myself down for the rest of the day. And this should all improve over the next two weeks, ahead of round two on November 15.

Gonna sign off now. This update is a little rough but I think that should get better as we begin to use the new site for these posts.

Once again, to all of our dear, dear friends and family, thank you for your continued support, encouragement, and prayers. We love you all!

14 October 2010

I can't believe it's only been a week and so much has happened! I have felt at least a half-dozen times that I needed to post an update, but I haven't. I'm sorry about that. My head has been spinning!

It's been something of a roller coaster that began on a definite down note, as reported in my last post, with the Radiation Oncologist, Dr. Christopher Jones. Following the Radiation Oncology consultation, I was in a fog, stunned, for several days. During that time I had a strong feeling that I would come out of the funk and return to the more confident, positive, at-peace state I had been after the first bad news (the initial cancer diagnosis). In the meeting with the radiation oncologist, he described in detail just what I was facing in the treatments, how long they would last, and the temporary and permanent effects they would have on me. These effects will be with me for the rest of my life as there will be permanent damage from the radiation. I think it was in this meeting that the true weight of what I have and am facing settled in on me. As I say, the best way to describe my reaction was "stunned." I think the truth was that I was in shock.

On Monday of this week, the 11^th, I had my second follow-up meeting with Dr. Ernest Johnson, the surgeon that took the malignant cysts out of my neck. He had delivered the first blow, the news of the cancer in the excised cysts, and he didn't do much to cheer me up in the second visit. Following removal of the massive, malignant cysts, I quickly developed a new, almost-as-massive lump in the same location. He told me this was probably scar tissue that will likely remain under my chin for the rest of my life. Great.

However, later that day we (Jennie and I) met with another new doctor, the Medical Oncologist, by the name of Dr. Samer Shihabi. Dr. Shihabi provided some further insights into the course of treatment, explained a few more things, and provided a ray of positive news. First, he explained the administration of the chemo. I'll have a port installed in my chest that will allow simple access directly into one of the major veins going into the heart. I'll go in on a Monday morning for seven hours of infusion. I will leave after that with a pump still attached to my port. I'll keep the pump for four days, returning it on the Friday of the same week. I'll then have two weeks to process and recover from that treatment. The three week cycle will then be repeated two more times for a total of nine weeks. This will be followed by seven weeks of daily radiation. Now this may not seem like much, but the good news was that in those two week periods between infusion, I should, or at least may, be able to work up to about 20 hours each week. He said I'll be tired but, depending on how I feel, there is no other reason why I shouldn't be able to work. That news, plus Dr. Shihabi's demeanor, tone of voice, and sincerity, lifted me up and broke the funk I had been in. He was just great!

As an aside, the reason the possibility of work was so important to me was two-fold. The minor reason is the income I can add into our family budget. The major reason is simply that this means I'm not rendered totally useless while I'm in treatment. As I said, it may not seem like much to others, but this was huge for me, significantly improving my mental and emotional state of mind. It allowed me the break-through I needed to return to a positive outlook. That's the huge part. I believe my own outlook is one of the three keys to my recovery. The first key is maintaining my close relationship and my total committment to and reliance upon God. Tied for second are the quality of the medical care I get and my own mental attitude. Without any one of these three I think my chances of recovery would be near zero. With them all, I believe my recovery is assured.

Following the meeting with Dr. Shihabi on Monday, the week has continued at a feverish pace with additional appointments, new things that need to be done before I enter treatment, etc., etc., etc. One of the side-effects of the radiation will be that the bone of my jaws will be killed. It will remain but without life and the capacity to heal from injury. Consequently, I was told to see my dentist right away and arrange for anything that might need to be done that would involve the bones of my jaws for the rest of my life. I need to get that work done ASAP so that healing can complete before the radiation and in spite of the chemotherapy. So, I went to my dentist, Dr. Lawrence Larson, yesterday. He examined my teeth and we talked for a long while. Ultimately, he recommended that I have two back molars extracted. He said they wouldn't last for the rest of my life and would eventually need to be extracted so we should do that now. So, that is scheduled for tomorrow morning.

And finally, at least so far this week, I had my PET scan today. This was the single most critical step in staging the cancer and determining my prognosis. Finding tumors below my neck would almost certainly have resulted in a diagnosis of Stage 4 cancer - in other words, terminal. No tumors below the neck would result in a much more positive prognosis with a good chance of complete cure. We hoped to hear the results of the scan tomorrow morning but, instead, Dr. Shihabi called at about 4:30 this afternoon. As soon as he said who he was, he told me, "There is no other cancer outside of your neck. The lungs are clear, as are the bones and all of the rest of your body." (Apparently the type of cancer I have most often spreads to the lungs and to the bones.) I responded by saying simply, "Thank you! Thank you! Thank you for giving us this news so quickly!" We talked a bit more about what needs to happen now to prepare for the chemo, but that news was literally life-giving. I was so relieved and happy that I didn't even ask him about the staging, location of the primary tumor, etc.

So that brings us up to the moment. Seems like a lot for one week, right? That's why I should have made several smaller updates instead of one huge one. But that's the way the week has gone. I still have cancer and still face major treatment challenges. But the prognosis is very good and I am very up-beat and confident. I am not forgetting Who is in charge of everything. God has richly blessed me and continues to do so. I already have a number of very good stories about how He is working through this circumstance in me for my good and for the good of those others with whom I interact. Perhaps at some point I'll make a special post dedicated to those stories.

For now, I bid you adieu and thank you all profoundly for your continued prayers, encouragement, and support. God bless you all!

07 October 2010

The news from the Radiation Oncologist yesterday was not good. He poked, he prodded, he looked. Still pending the PET scan results for confirmation, he said he believes the primary tumor is in the base of my tongue on the left side. He could see the tumor using a viewing device to look down my throat and he could feel it with his finger both under the tongue and on top, way back (gag). He also said that multiple additional lymph nodes were "involved" throughout my neck. The PET scan will be next Thursday at 11:30 AM and will be a full body scan. We pray nothing showing below the neck as that would turn the prognosis much more grim. As it stands, if no tumors are seen below the neck, and with massive chemo and radiation, he estimates a fair chance of complete remission. The treatments will lay me out for 6-8 months. The next significant news, and the beginning of chemo, will come following the PET scan.

I remain in God's hands, as are we all, and I remain thankful to Him for EVERY blessing of EVERY kind, the joyful and the difficult. He is at work in me and through me and I go willingly where ever He leads me.

29 September 2010

Thank you all for so many very sweet messages of support. I am receiving an outpouring of affection and support from every side, which is a genuine blessing. The love I feel for so many is being returned in abundance and this, after faith, is the best possible medicine.

I remain in good spirits and intend to keep that up. Strength and determination may be the second best medicine and I have both of those in abundance also, so I am optimistic. Most cancers of the head and neck are treated successfully so I am also hopeful about the prognosis I'll eventually get from the doctors.

Today's update is this. I was able to schedule my initial consult with the oncology radiologist (who should arrange for and interpret the PET scan) for next Wednesday, Oct. 6, at 3:00 pm. That's a bit more waiting than I would like but I think I'll need to get used to that. No matter how much I would like immediate attention, I surely would not have the doctors set anyone else aside who is experiencing the same wait.

I'll post again when there is any significant update. Until then, thank you all once again!

28 September 2010

Dear Friends and Relatives,

Jennie and I want to share the news we received yesterday from the surgeon that operated on me last Wednesday and the pathologist that examined the tissues the surgeon removed from my neck. We apologize for the distant mode of communication rather than personal contact, but that just isn’t possible with the number of people we want to share this news with.

The news yesterday from the doctor was bad but also incomplete, so we’re not sure exactly what it is going to mean at the moment. The surgeon removed two lumps from my neck and submitted them for examination by the pathologist. Both contained metastatic squamous cell carcinomas. Since they're metastatic, neither of these is the primary tumor. There exists, somewhere, a primary tumor which is metastasizing to other locations. We need to find the primary tumor and the locations of any other metastases in order for the doctors to recommend a best course of treatment. The pathologist suggested some more and less likely sites for the primary tumor (all head and neck but not brain) but the way to find out is with a PET scan. (What's a PET scan? Look here.) The surgeon referred me to another doctor for the PET scan, diagnosis, and treatment. At the moment, I'm waiting for a call from that doctor to arrange the time for the PET scan.

So, bottom line, we’re in limbo at the moment but I will likely face some combination of surgery, chemo, and radiation. The extent and likely impact of these on my capacity to work, study, etc., remain unknown.

The good news is that, apart from some significant bruising on my neck and a large incision that needs to heal, I'm feeling good. I have very little discomfort and only some self-consciousness about the bruising and large bandage, but that is just vanity so I should ignore that and get on with things.

We ask for good wishes and prayers on my, Jennie's, and Jodie's behalf. We believe that with God as our strength and comfort, we will simply keep on keeping on to the very best of our ability, not giving in or falling apart because we’re facing a challenge. We feel and deeply appreciate the affection and care that all of you offer at every opportunity. It is much appreciated and a great help.

Warmly,

Steve and Jennie

The picture and the shirt don't reveal the truth, which is, I've lost a LOT of weight, about 75 pounds and 8 inches off my waist at last check! This has nothing whatever to do with illness. Aside from the cancer (!) my body is in better health today than it has been in many, many years. That's a good thing!