Bobbie Update - Jan 13, 2009

I'm afraid that I am the bearer of bad tidings, but I wanted you all to be aware.

Bobbie has been in and out of the hospital over the past month or so with abdominal pain and a general feeling of being sick (weakness, fatigue, low grade fever, etc.) and was found to be anemic and losing blood via her digestive system.  The exact cause has remained elusive and they had given her 6 units of blood via transfusion over the past 2+ weeks to remedy while they tested her trying to find the cause.  Among the tests given at Rex hospital were:

• X-ray - negative
• Endoscopy - erosion in stomach (pre-ulcer)
• Colonoscopy - 2 small polyps, negative
• Barium swallow - negative
• Endoscopic camera pill - bleeding and mass in upper small intestine
• CAT scan  - 4x masses in small intestine

Upon receipt of the results of these tests, she was referred to a specialist at UNC Hospital to perform a "push endoscopy " which was performed today, 1/13/09.  He verified that the masses which he could see appeared to be melanoma cancer and biopsied them, though we will not receive those biopsy results for 2-3 days for full confirmation.  While she was still sleeping off the anesthesia, I spoke with the endoscoping doctor as well as a surgical consultant.  It appears that there is really no other treatment option outside of surgery, so we will be meeting with a surgeon here at the hospital tomorrow to discuss the plan.  The consultation today indicated that the most likely effort will consist of removing  (redacting) a portion of the intestine/bowel that contains the tumors, though there will also probably be an exploratory element to the surgery in terms of discovering what additional tumors may be present that are undetectable via the tests discussed above.  Apparently, 20+ feet of intestines is impossible to non-invasively map.

So, we wait until the surgical team rolls through tomorrow before we know anything more.  I don't know how long Bobbie will be incommunicado, but will pass along anything I get by email and the like.  She has her cell phone by her bedside, but I don't know what they will be giving her in terms of medication that might keep her knocked out.  I won't bother passing out a room number until she is seen by the team tomorrow, because it is possible that they will move her from the general medicine floor to the oncology floor.

Bobbie asked me to send out this update, though I had already planned to do so.  I will send out another update asap after we meet with said surgical team.

Please forgive any misspellings or the like.  It has been a long couple of days.

Relgious Issues - Scholastically Speaking

We send Killian to a Christian preschool voluntarily.  I understand that.  I have no issues with doing so.  For the most part, I have no issues with many of the Christian moral teachings and will likely utilize several of them throughout his upbringing.  We send him there because it is the more affordable option for us and it comes with the bonus of educational components.

As a result of his attendance there, I make certain concessions and have certain expectations.  For example, I expect that religious practices will occur throughout the day - probably start of day prayer, grace before snack time, etc.  I make no bones about them presenting a mini sermon to us before the events such as his Christmas pageant and the like.  These are things that I deal with because it is their practice and turf.  In his time there, I do, however, have beef with two particular things that I am aware of that have occurred/been taught:

1. The first one that I noticed was when was at home one day with me and we saw an American flag and he proceeded to say the Pledge of Allegiance.  I thought that was pretty cool and cute because I didn't know that he had learned it.  However, he then followed it up with the pledge of allegiance to the Christian flag.  Apparently this is something that happens outside of just his school, I have since learned.  I don't so much have issue with the fact that there is a pledge of allegiance to the Christian flag that exists or even to the fact that they teach it at the school for the children to say.  I do, however, have extreme opposition to it following the exact pattern of the Pledge of Allegiance to the American flag.  I believe that this takes away from the purity of the latter as well as the former.  Don't get me wrong, I'm not Captain Super Patriotic that is going to go into a tirade here about the American flag and the pledge and all that.  I just think it is wrong to muddy the waters and confuse the 4 year old children by copying the exact pacing and rhythm of the American flag Pledge of Allegiance.
2. The more recent event was the one that I posted about on the Killian and Me blog.  In his Christmas pageant yesterday, the class sang Jesus Jingle (Bells), which is outright Jingle Bells plagiarized to death with Jesus related lyrics plugged in throughout.  Again, I have no issue with them teaching him a religious song (pick your favorite hymn, for example).  What I do have issue with is teaching the kids a bastardized version of a holiday classic such as Jingle Bells.  So now when I kick into a verse of Jingle Bells along with the radio, he can't sing along with me until I go through the effort to teach him the "correct" way that the song goes.  Fortunately, he wants to sing it "daddy's way", but it sucks that I have to make an effort to change what he has learned about such a simple and common thing.

These are probably completely acceptable things to those of more religious ilk than I, and as I voluntarily choose to send him into the midst of this education environment, I have not a lot of room to talk.  So, I don't.  That is to say that I don't in the form of parent to teacher feedback, but that is primarily because I know that it is public school for him come next year and kindergarten so I don't really have to worry about it long term.  However, even with him not exposed to it come that time, my opposition to the concept will still stand.  If you want to teach songs and pledges that communicate your chosen ideals, feel free to do so.  I have no problem with that.  However, make them your own.  Make them original.  Don't tread on favorites and classics to weasel your ideals in.

On a side note, I'm all for parody.  Keep 'em coming, Weird Al!

Bobbie Update - December 1, 2008

I've been meaning to get an update out since before Thanksgiving, but just haven't taken the time to do it.  We had a minor milestone today, though, so it seems like as good a time as any.  Today was her first follow-up visit with neurosurgery at UNC Hospital.

Last time on "The Bold and the Tumorless", Bobbie had just had her sutures removed, was weaning off of her steroids (her sleeping patterns were improving as a result) and she had managed to free herself from Percocet.  Since then, she has remained Percocet and suture free and had managed to stop needing Ambien, but when she was finally completely off the steroids, she started having some headaches and began to get really sleepy throughout the day.  A call to the docs ended with her being bumped back up to her full regimen of steroids which helped with both the headaches as well as the exceptional fatigue.  Sleep patterns, however, were back to minimal and Ambien was back in the mix.  Otherwise, her recovery has continued to carry along very well.

As of today's visit to the neurosurgeon, it was pretty much all good news.  He introduced another step-down plan for the steroids, so she should be back off of them in 12 days.  He reminded us that she had brain surgery less than a month ago and that even though her recovery is moving along nicely, some sleepiness/napping is to be expected, but that by the time these steroids are weaned, she'll be another 3 weeks down recovery road from where she was last time and he doesn't expect that she will experience quite as much fatigue at that time.  In addition, she was given the green light to drive again as long as she & I felt comfortable that she was good to do so.  No legal restrictions were in place since she had not experienced a seizure that had resulted in loss of consciousness (or any seizure for that matter).  Much celebration was had by Bobbie that she is good to go again with driving.  Funny how you miss the little things, but I guess it would be frustrating to have to rely on others to get you where you need to go and she has been doing so for well over a month now as she couldn't drive for almost 3 weeks before surgery as well.  Other than that, he said that the incision looked great.  Her vision and motor skills checked out as well.

From here, the next step is that she will have an MRI on January 5 followed by an MRI every 2 months for awhile, then every 4 months, then every 6 months and I think eventually annually.  She will be on her anti-seizure medication until that Jan 5 appointment, but will probably discontinue it at that time.

As mentioned before, Bobbie is open for contact by phone, visit or email, so this is likely the last update I will send out until her next MRI barring any significant news.  I thank you all again for your interest and words of comfort and inspiration along the way. It has been therapeutic for me to be able to communicate to you all in this fashion and has saved me from having to tell the same stories over many times - both good news and bad.

Significant Detour

Some of you may be wondering where I disappeared to (watch me pretend that there are even "some" people that read this). It has been a rough road for the past several weeks. No doubt there are still several related challenges ahead, but we've made some progress. About 4 weeks ago, my wife was diagnosed with a brain tumor spread from her previous bouts with melanoma. Below is a collection of status emails that were sent to friends and family throughout the event thus far to help catch you up as much as to document for myself. There may be some time gaps in there, but I think I captured most of everything.

• Oct 27, 2008

To most of you, the following will be new news. Heck, it's actually still new news to us. Not good news, just new news. I was waiting until today to pass this along because we just didn't have enough details until our appointments today to make much sense of anything. You will have to forgive me if I ramble a bit or seem at all incoherent as it has been a long week and a very long day. Also, I apologize to anyone I might have missed with this news (if you heard it from the grapevine). Please feel free to pass along to anyone that you feel may be interested.

On Wednesday of last week, Bobbie woke up feeling that her equilibrium was askew. She had difficulty walking and couldn't judge distance with any degree of accuracy. It was difficult for her to walk 2 steps without having to grab something for support. At first, we though not much of it as she felt ok while sitting or lying down. There were plenty of colds and such going around that we thought perhaps that an ear infection or something was likely to blame. We went to see our (very soon to be former) family doctor who diagnosed it as an episode of vertigo (previously never experienced by Bobbie) and prescribed Valium. When we contacted her oncologist (cancer doc) to verify that it was alright to take Valium in conjunction with the multitude of medications that she is taking to treat her melanoma, he questioned the symptoms and brought Bobbie in for an MRI of her head. As most of you probably suspect by this point, the findings were unfortunate. Her oncologist informed us that the MRI showed a tumor in her brain that is very likely melanoma that has metastasised (sp?) in her brain. So, it went from a normal day to an utter nightmare in the span of about 8 hours.

He scheduled us to meet with a radiology therapist and a neurosurgeon the next day at Rex Hospital. While meeting with the radiology therapist, the neurosurgeon called him to let him know that he was unwilling to do the surgery because he did not think he could do it with success. The radiology therapist communicated the information and referred us to a neurosurgeon and radiation therapist at UNC Hospital. This was even scarier to hear, as this, in my mind, classified the tumor as potentially "inoperable". What's scarier than a brain tumor? An inoperable brain tumor. Another MRI at UNC was scheduled at that point for yesterday, Sunday, followed by meetings with the neurosurgeon and radiation therapist today.

So, after four days of entertaining some of the most terrifying news in our lives, we met with the aforementioned doctors today. The neurosurgeon at UNC immediately put my mind at some ease when he both spoke of how he would do the surgery and that it would likely have no adverse affects. Of course, with any surgery, there are always potential complications. More so with brain surgery. In Bobbie's case, the tumor/lesion (they used both terms and said that they mean the same thing when describing Bobbie's issue) is located near the rear left/center of her brain. As described by both doctors, it is seemingly behind, but close to the motor function portion. I'll refrain from some of the details he gave us about how the operation works, but the primary take away is that the most likely of the unlikely complications involve the loss of some strength in the right side of her body (arms, legs) or a potential blurred portion of her peripheral vision on her right side. Obviously small worries compared to the benefits of removing the tumor, but of concern in any case. The radiation therapist - we were sent to him because apparently, in the area, only UNC Hospital has some of the tools they use for radio-surgery - gave us some input as to what they could do both from a purely radiation side (no cutting surgery) as well as how radiation could be used in conjunction with surgery to treat her condition. To make a long story shorter there, he suggested that if it were him, he would go the surgery route with radiation treatment to follow as the most likely success in the long term. This was in concurrence with what the surgeon had told us in the earlier meeting.

So, based on our consultations with those two doctors and their consultations with each other, Bobbie will be contacting the surgeon's office tomorrow to schedule brain surgery. It will most likely be as early as next week. Assuming no complications, they speculate about a week long hospital stay followed by recovery at home and radiation treatments. They will also do a PET scan to determine if there are any other occurrences of the cancer elsewhere in her body (please, please let there not be), but they will treat the brain tumor before that.

So, that's about as much as we know at this point. Heading into today, I had never been as worried/freaked out/concerned/panicked/InsertNonPleasantEmotionOfYourChoiceHere in my life. Even though it is still a very frightening endeavour, I can go to bed tonight with at least the knowledge that we have some options and are moving forward with treatment hopes. Needless to say, Bobbie is wrestling with emotions and concerns that we can only guess at, but she is holding up remarkably well under the circumstances. There are few women that I have encountered in life that can hold a candle to the mental and emotional strength of the woman that I am fortunate enough to call my wife and I admire her indescribably for it.

Many of you have offered your assistance in the past with the challenges we have faced in her cancer battles thus far. I am certain that those offers still stand and will readily call upon you in the coming times should the need arise and thank you in advance for your help. I ask that you continue your positive thoughts, vibes, and prayers along with your kind and supportive words as we get through this.

• Nov 4, 2008

Just an update on where we stand as of today.

We met with the neurosurgeon at UNC again on Thursday, Oct 30 to discuss the details of the surgery. This meeting made me (and hopefully Bobbie - at least I believe so) much more comfortable that we are facing a surgery with a high expectation for success with minimal to no side effects/complications. I will spare most of the details, but there is an option that they may be able to go between the two halves of the brain to get to the tumor without having to penetrate healthy brain tissue to get there. The tumor rests in the parietal lobe and if they do have to penetrate healthy tissue to get there, they will attempt to penetrate only the parietal lobe tissue. As explained by the neurosurgeon, the functions that will most likely be affected if so will be the ability to determine right and left (might have to think for a few seconds when putting on her shoes, for example) and "calculation" (not completely sure what this might mean, but we were processing so much at the time that we failed to get clarification - I'm guessing mathematics). The previously mentioned risks to her vision and motor skills remain a factor, but lesser so now, we think.

She is also participating in a test study at the suggestion of the surgeon for placing chemotherapy wafers in the tumor cavity once it is removed. This will allow for chemotherapy to be delivered directly to the affected area since the brain is apparently not treatable by chemotherapy via normal means due to the body's design to protect it. The most probable side effect of this test study is a minor increase in the probability of seizures (estimated 2% increase). Otherwise, they anticipate no additional complications related to the study and the surgeon suggests that the potential benefits outweigh the risks. So, she went in yesterday to finalize her qualification for the study. Basically, I think she just had to not be pregnant in addition to having the tumor. They also did some "before" tests on dexterity and short and long term memory recall.

At this point, she is scheduled for surgery this Friday at UNC Hospital in Chapel Hill. It is called a "Craniotomy left palieto-occipital". The exact time is unknown and won't be given to us until the day before (to accommodate emergency procedures that may be scheduled in the meantime). The surgeon expects it to be around 1-3pm for a start time and that from the time she leaves us until she is in recovery to be perhaps 8 hours, though he anticipates that the actual surgical portion should take only 3-4 hours. So, I'll start worrying around minute 7, but I won't start panicking until the 9th hour. At least that's my plan.

She has to go in for a specialized MRI on Thursday night to do a final mapping of the brain before the surgery. They have had her on steroids to help shrink the tumor for the past almost 2 weeks. The side effects of that are that she has very interrupted sleep (taking Ambien to help counter that some), difficulty in concentration/easily distracted and she stays hot most of the time. Otherwise, she is still dealing with the dizziness most of the time, but the headaches have subsided some. Overall she is somewhat normal Bobbie though - at least in personality. She is in very good spirits. Well, her temper is much shorter than usual, but they say that the steroids are likely the cause of that as well. :)

As for recovery from the surgery, the expectation is still that she will have an estimated week long hospital stay (I'll get the address, room and visitation info out once we have it for flowers, visitors, etc). After that, we plan to go to Newport News to stay for a bit so that my family can watch over her and Killian while I work out of my company HQ there. Treatment thereafter will have to wait until they evaluate the success of the surgery.

So, all told, still not a fun time ahead, but at least we are looking at a positive prognosis. Gotta keep the mind on the silver linings.

• Nov 8, 2008

Bobbie had a good night, though with very little sleep. The steroids they are giving her (for swelling) make sleep spotty and they didn't want to give her any sleep aid last night. I'm guessing that is related to brain surgery on the whole, but that is total speculation on my behalf. When I arrived this morning (they don't let you stay over in neuro ICU) she was downing a blueberry muffin and joking with the nurse tending to her. Her spirits are great and she looks well - good color, etc. She ate 2 full dinners last night before I left, so at least her appetite is in check (accelerated actually, thanks to the steroids). We were able to visit with her for about 4 hours before they kicked us out last night, so that was nice. She has a plethora of attachments including IVs for medications as well as monitoring equipment for blood pressure, pulse, respiration & heart rate. The blood pressure monitor is in an artery on her wrist and it goes crazy anytime she bends her arm but not to medical concern. It's just the way the method works. Also, she has a fancy bandage hat that looks like bad comedy hospital head bandaging. It's pretty funny. Wish I had remembered my camera before heading out this morning - not allowed to have your cell phone even powered on in ICU so I can't use its mediocre camera.

They took her down for an MRI to check things out just now, so I took the chance to toss an update out. They should be issuing a request to get her moved out of ICU today and into a normal room where she can receive visitors, call and flowers and the like. I'll pass that info along when I have it and am able.

Her surgeon is actually out of town this weekend (I just learned) and she will see his assistant during her recovery at the hospital this weekend. I imagine that the surgeon will probably swing by to see her on Monday as well, but that is another guess from me. The nursing staff has been very pleasant and nice thus far, I am happy to report.

Nothing else really to update. The big news is that she is doing well. And to those that I haven't had an opportunity to respond to directly, thank you for all of the encouraging commentary as well as your thoughts and prayers.

• Nov 9, 2008

Hello all. Bobbie was moved to a regular room last night around 11pm. They took her head bandage off today. I haven't seen her yet, but will be leaving for the hospital as soon as I click send on this message.

She saw a doctor this morning who said that her recovery is moving along very well and that it is possible that she will be discharged as early as tomorrow. I'm a little uncomfortable with that considering that the farthest she has stood up and walked thus far is to the restroom and even that requires assistance from others. I'd really like to see her be able to take an accompanied stroll up and down the hallway and have a conversation with one of the surgeons that actually performed the operation (both out of the office until tomorrow) before they give her the boot. So, I'll be seeking council with doc on staff that mentioned tomorrow's potential discharge while I am there today to discuss.

I can't remember if I mentioned this in any of the updates yesterday, so I'll toss it in here even if it's a repeat. Bobbie was having some issues with her blood sugar being high yesterday. They say that the steroids can be a contributor to it, but they are giving her insulin to control it. That is also something that I want to talk to the doctor about because I'd like to see that in check or understand what we need to do before she is discharged as well.

In any case, the fact that they are even considering discharging her tomorrow is a testament to how well her recovery is going. Her actual room info is below, but please call one of the following numbers if you plan to drop by for a visit so we can help control traffic and timing. Since she's sharing a room (not to mention recovering from brain surgery), we don't want to end up with a too big of a crowd in there or visitors while she's snoozing (which she is still not doing much of, thanks to the steroids). If you want to send flowers or anything, you might want to hold off until we find out about discharge tomorrow. That way, if you still want to send something and she has been discharged, it can just be sent to the home address or my parents' address while she we are staying there. I will get the pertinent info out as soon as it makes sense.

[Contact and details removed for internet publication]

• Nov 10, 2008

Well, looks like Bobbie will likely be discharged today. We spoke with the a surgeon at about 8:30am and it seems highly probable that they will issue a discharge for her early this afternoon. Very surprising to me, but I feel comfortable with it after having spoken with the doc. She's doing great and her blood sugar check this morning was even within the normal range. Bonus. I think at this point, the things she is looking most forward to when getting out of here, in order, are:

1. 1 - seeing Killian
2. 2 - washing her hair (which they are saying OK to using only baby shampoo)

So, at this point, assuming that she does get discharged today, the plan is for us to go home tonight and then leave for VA in the morning. So, if you want to send a get well card or flowers are anything to her, it would probably be best to send it to my mom's house where we will be staying for a couple of weeks:

[Contact and details removed for internet publication]

I will be sure to let you guys know as soon as a final answer comes down. Bobbie is well awake and available for calls she says if you want to take that route. On another note, her laptop fried when I was trying to get it setup for her at the hospital yesterday, so she may be out of email communication for awhile.

An odd side note - the helicopter that airlifts people into the hospital lands just about on top of Bobbie's room, so it actually makes for pretty interesting viewing because you can see (and hear) it coming in really close from her window.

• Nov 10, 2008

Pretty little to say here. Bobbie is officially back at home for the night. We will be leaving for VA in the morning, but she has been freed from the hospital. Barring any unfortunate happenings like seizures, her next visit to the docs will be in about 10 days for staple removal and then in early December for a follow-up with the surgeon. Woohoo!

• Nov 13, 2008

We have been in VA for almost 2 full days now. Bobbie is doing pretty well overall, with the exception of recurring serious headaches and a nice case of what we have lovingly called "juicy eye" for years. Most recently, she had a headache that kicked in at about 9pm last night and ran until about 8am today even with 3 doses of percocet in the meantime. I called the hospital at 7am to ask the neurosurgeon on call about it and was given instructions to take her to a family doc or an urgent care facility since we were out of town to have her checked out for sinus issues since she is prone to sinus infections. Other than that, they weren't really worried about the headaches since she wasn't showing signs of any other neurological symptoms such as one side weakness, difficulty rousing from sleep, slurred speech and other general signs of stroke. Basically, we were instructed that she should just take the percocet regularly to get ahead of the headaches rather than taking it retroactively. The only cause that we can tie to the onset of the headaches most recently is when she used my laptop for a bit to get addicted to facebook. After doing so, it seemed that the worst of the headaches hit, so it is likely that she won't be online again for a couple of weeks, but I will keep her abreast of any communications sent through me and will now likely have to serve as a proxy user for her and facebook. I think I'll be playing the part of mouse, eyes & fingers and she facebooks her way through the next couple of weeks. I know I'm going to regret having helped set her up for that... ;)

My parents got her to our family doc (who, coincidentally, runs an urgent care facility) this morning and she does, indeed, have a sinus infection along with a nice case of conjunctivitis (pink eye). So, she now has a couple of additional medications to add to her repertoire, but at least we know what the issue is and hopefully that will help to ease some of her headaches.

Speaking of medications, today marks her first "step down" day for the steroids. That is to say that she goes from 12mg/day (4mg 3x/day) to 8mg/day (4mg 2x/day). It tapers down every so many days from here until she is off of them (over a total of 15 days after leaving the hospital). Two positive effects there are (hopefully) improved ability to sleep more regularly and a reduction in overall body swelling, which is something that she has been complaining about for the last few days. Apparently, as told by the surgeon, the surgery along with some of her medications, particularly the steriods, will cause water retention and associated weight gain that will dissipate as she comes off of the steroids.

All said, she is still doing great and learning her way through recovery. She has received a few bouquets of flowers at my parents' house and I am sure there will be appropriate thank you cards en route to the sending parties as soon as she is feeling up to writing them. In the meantime, let me throw a personal thank you out there to everyone who has contributed anything supportive from thoughts to words to flowers to babysitting to patience over the course of this. It has been inspirational and helpful to both Bobbie (to whom I read many of your responses) and myself.

• Nov 19, 2008

A few people have pinged out to me for an update, so here we go. Not many changes since last I threw an update out there. Bobbie's recovery continues to go particularly well. I don't quite remember where I left off in the last update, but I think it was that we had been in VA for 2 days and Bobbie had a sinus infection and conjunctivitis.

Since then, they have both moved on and she has been doing great. Ridding herself of those and sticking with the Percocet regimen and beginning her weaning from that today seems to have staved off the vast majority and severity of the headaches that she was experiencing. She's even back to using the computer some each day and able to do her facebooking and emailing.

She actually got her sutures out today and the doc said that the incision was healing "remarkably well" and that it looked great. She still won't be allowed to drive until we meet with her surgeon in early December for her follow-up and he gives her the ok. I believe this is where we will begin to discuss treatment and monitoring going forward. She also continues to step down the steroids dosage and that is helping her to sleep a little better. She's still averaging only 5-6 fairly solid hours/night, but it's better than the 3-4 interrupted hours she was getting.I think that she has been in touch with many of you over the past several days by either phone and/or email. As mentioned in previous messages and indicated here, she is open for phone calls or able to respond to emails if you want to contact her directly, so feel free to do so.

Until next time...

Testing an iGoogle Module

Let's you blog directly from your iGoogle page. Pretty handy.