Bobbie Update - Jan 24, 2009

Ok, I sucked at getting updates out those last couple days in the hospital, but I was tired.  That's pretty much my only excuse.

The good news is that she is now at home and spent the night in her bed for the first time in about two weeks last night getting a good night's rest.  The cyberknife treatment yesterday took almost exactly 3 hours and they discharged her pretty much right afterward.  They switched her to solid foods (regular diet) during the day Wednesday and she voluntarily gave up her morphine trigger on Thursday.  She went the entirety of yesterday with no pain meds at all.  This was mostly for the cyberknife procedure, but still pretty impressive.  She took some before bed last night, but that was after a car ride home, a stair climb at the house to the 2nd floor and a shower without the handy stool that they have in the hospital shower.

She celebrated her return home with a Rosemary Chicken meal from Johnny Carino's and is currently contemplating when to head to VA to see Killian.  I'm going to try to convince her to stay and recover in a peaceful, empty house for about a week before making the trek, but it will ultimately be up to her.  I will take her up whenever she needs to go to appease her emotional health.

So that's pretty much it.  She has a follow-up appointment with her surgical oncologist next Thursday and a follow-up MRI and appointment with the neurosurgeon in 4-6 weeks.  After that comes discussions about where to go next with treatment.  The war is certainly not over, but at least we are in reprieve for a short time.

Yet again, thank you all for your supportive words and actions throughout the course of this so far.  I cannot adequately tell you how much it means to us both.

Bobbie Update - Jan 21, 2009

Hello all.  Sorry that I failed to get an update out yesterday, but not a significant amount to report.

I spent the night at the hospital with Bobbie on Monday night in preparation for the inbound snow and then all day on Tuesday, working from the hospital (a thank you to my employer for the allowance).  Her condition remains fairly unchanged with a few exceptions.  She is still in a significant amount of pain and continues to have a constant morphine drip in conjunction with a button that she can voluntarily push for additional doses.  They did, however, reduce her constant drip dosage yesterday in, I assume, an attempt to wean her or at least get her down to just the triggered dose.  She also managed to get bumped up to an introductory liquid diet yesterday as of about noon.  She is now allowed to have up to 12 oz/day of water and/or fruit juice.  Hopefully she will soon step up to a full clear liquids diet (to include broth, Jell-o and the like).  She hasn't had anything to eat or drink since Thursday, so I'm sure that even the pitiful 12 oz allowance is a welcome event.

She got up and went for 4 walks on both Monday and Tuesday which, as mentioned in prior updates, is good for her lungs as well as getting her digestive system in motion.  She also took her first shower since surgery on Monday which was a welcome relief and I think a good "pep up" for her.  I know I feel pretty cruddy on the rare occasion that I don't get a shower during a day.  Her blood oxygen level remains in flux, but it is trending more toward the lower acceptable end now, so that is a good thing.  

- Just got a call from Bobbie while writing this update.  New news below. - 

She had a pretty decent night last night, but feels really tired this morning (not just sleepy, but fatigued).  As expected, she will have her good and bad days during recovery.  They apparently had her up at 4:30am to get blood, check vitals, etc. and she has been up since then.  

She spoke with both her attending surgeon as well as one of the neurosurgeons (the one running the study from her original brain tumor) and it appears that she will be discharged on Friday.  They plan to do the cyberknife surgery on Friday and then she is headed out.  She is going to follow up with them today or tomorrow to determine what is involved in recovery once she is discharged.  That is, whether or not she will be able to travel to do her recovery in Virginia and when and what follow-up appointments will be necessary following her discharge.  Good news that she will be out so "soon", but I am curious as to the apparent practice that they do the brain procedure and then send her right home.  As a layman, I would think that they would at least keep her for overnight observation, but maybe this is typically an outpatient procedure.  I wish I was there when the neurosurgeon rolled through to ask him questions around that, but I am hoping that I will have an opportunity to do so before the procedure and discharge.  I asked Bobbie to have him or his office call me if he is willing to do so.  She's so in and out of pain that those thoughts don't come to her right away to ask, not to mention the fact that she has to deal with thinking about the procedure itself along with her current recovery 24/7.  You can't blame her for not coming up with those questions on the spot.  Her thoughts  and concentration are, as they should be, on recovering and getting better, not planning on when to be where.

They are changing her pain medication today to get her off of the morphine.  She did not know what they were changing her to when I spoke with her this morning.  I will be headed up to the hospital after work and can hopefully get some of these questions answered by the nursing staff if not the doctor on call if Bobbie doesn't have them by the time I get there.

Bobbie Update - Jan 19, 2009

Just a few things to report since yesterday's update.

They removed her NG tube (nose) yesterday, which was probably her single biggest irritant.  Her blood oxygen level has remained low since yesterday morning.  It's been varying regularly between 83-93% (93% is the lowest they want to see it), so they have had her utilizing an oxygen mask throughout.    They continue to tell her that walking and utilizing the breathing exerciser will help remedy this.  Her fever subsided yesterday afternoon.  They got an abdominal support for her (can't remember what the official name for it is) which is pretty much like an Ace bandage girdle.  That helped significantly with the pain that she was suffering following the removal of the bandage from her incision.  She ended up taking 2 walks yesterday and has walked once today.  

She is down to 2 tubes attached - IV and oxygen mask.  Otherwise, it's just a matter of pain (which there is still a considerable amount of) management and getting the plumbing back in functioning order.  

I will be heading up to the hospital tonight to stay the night and work from there tomorrow due to the inbound snow.  Sadly, 2-4" can bring this town to its knees.  I just want to make sure that she doesn't have to spend the day alone.

I think she will be in reasonable shape for visitors today and beyond.  As before, just make sure that you call ahead before planning to head out.  The morphine keeps her zonked out from time to time and her sleep is intermittent.

That's about it, for now.  More to follow as any developments occur.

Bobbie Update - Jan 18, 2009

Bobbie had a pretty good day yesterday:

• she got up and made three walks down the hallway throughout the day
• started coughing as they requested helping to get her lungs back in action
• got moved to a private room - no roommate, woohoo!

However, her night was a little rough.  They had to adjust her NG tube (nasal drainage for stomach) a bit and that was exceptionally painful for her even though they said it shouldn't be at all.  The doctors were notified so that they medicate her appropriately before removing it when the time comes.  Her blood oxygen level has also been running a little low, so they have her on oxygen to help with that.  Her sleep was restless, intermittent and frequently interrupted so I'm pretty sure that she is just generally tired.  She is actually sleeping as I type this.  She has been running a fever this morning and isn't feeling particularly well.  Both pain and nausea along with discomfort in her nose from the NG tube adjustment along with the oxygen tubes.  The bandage was removed from her incision (though surgical tape still remains) and that has been causing her some discomfort as well.

On more positive notes, they took her urinary catheter out this morning so she is able to use the restroom normally.  They also told her that she should be able to take a shower today if she wants.  Additionally she continues to use the "Incentive Deep Breathing Exerciser " to help cause her to cough and clear her lungs.

Unfortunately, it looks pretty doubtful that she will be up for visitation today.  I know a few of you were interested in doing so, but it is probably best to postpone.  She still has her cell phone, so just be sure to call ahead and check before planning a visit.  If she doesn't answer, she will call you back as soon as she is up to it.

Wish I had all good news in this update, but if nothing else, let this serve as a demonstration that it is a struggle that she endures and not just an issue of time in the hospital.

Thank you all for your vigilant words, thoughts and prayers.

Bobbie Update - Jan 17, 2009

Bobbie had a pretty rough night.  Lots of pain, but whenever the morphine kicked in, she seemed to be able to drift off to sleep for a good 20-30 minutes at a clip.  She laid fairly motionless, which is to say in the same position, from pretty much the time that she got to her room until they inclined her bed to a 30 degree angle at about 4am.  Even after that, she remained on her back in pretty much the same position until this morning.  Not that the position changed much this morning, but she was moving her arms and head a little and she even bent her knees up for a bit to try to help ease some of the pain.  She was pretty much out of it until about 6am when she woke up and was fairly coherent until around 8am and then again from 10-11am.

The surgeon who assisted in the procedure came by this morning at about 10:30am to check up on her and recapped the surgery for us again.  As it turns out, we either heard wrong, misunderstood or were explained to incorrectly what actually took place.  They actually removed two sections of small intestine totaling about 2-2.5 feet in length together and containing a total of 6 tumors.  They left 2 tumors behind that were close to her stomach that they felt could be likely be addressed through an endoscopic procedure.  2 of the six which were removed, the two that were likely causing her abdominal pain, were larger ones that were causing her intestine to telescope upon itself (think folding a pair of socks when you tuck them together).  She said that her hospital stay specifically related to this surgery would probably be in the 7-10 day mark, but it all depends on how her personal recovery goes.  The brain portion will be addressed once this surgical team has classified her in hospital recovery period complete.  It's amazing what they can do with the human plumbing.  They are going to have her get up out of bed and walk and sit in a chair today at the very least.  Bobbie is, of course, terrified due to the pain she is experiencing just lying still.  I inquired as to the importance of this activity and it is three fold:  1) to enhance circulation in the legs to avoid clotting risk, 2) to reactivate the portion of the lungs that collapses while under anesthesia and 3) to help stimulate the colon back into action following its shutdown during the surgery.  Lastly, the switched her over to a constant morphine drip to help get the pain to manageable.

Bobbie is sharing a room with a woman who is hard of hearing and spends a pretty significant amount of time on the phone with someone else whom appears to share her auditory condition.  Not so much fun when you are trying to sleep, rest & recover.  On the common area side though, she had a similar surgery.  As explained by her, she had her large intestine removed such that her small intestine now connects directly to her rectum. I'm pretty sure there should be a colon somewhere in there, but I didn't want to press the issue.  Also on a lighter side, Bobbie is not allowed to have any diet (IV only) until she "passes gas from her bottom", so every medical person through that room over the next couple of days is basically going to ask Bobbie if she has farted yet.  Killian would love it.  I have no choice but to instruct him to ask mommy that every time he speaks with her on the phone.  Once she does the deed, she will be able to have the stomach suction tube removed from her throat/nose and, I believe, initiate project clear liquids diet.

So, that's pretty much the status as of now.  I left the hospital at 11:30am with her mom keeping company to come home and get a shower, some lunch and maybe a nap before heading back out.  She's definitely not going to be up for visitors today.  Tomorrow is still up in the air.  It just depends on how she does through the day & night.  She has her cell phone in the room, but I left the ringer off.  So, feel free to call her and leave a voicemail if you like.  She will return and make calls when she feels up to it.  Also, she has her laptop at the hospital and they have wireless networking, but I don't at what point she is going to feel up to getting online.  Point being, also feel free to drop her an email or a facebook message and she will get it somewhere down the line.

Thank you to all for the thoughts, words, prayers and in some cases actions thus far.

Bobbie Update - Jan 16, 2009

Bobbie is now in her room where she will likely be for the next 7-10 days.  She is in room [edited for internet publication].  She is currently in some pretty significant pain, but they did some pretty significant stuff to her in terms of incision and surgery, so it is to be expected.  She has a morphine trigger that she can hit every 10 minutes and they are dosing her with some additional morphine, but I don't know how long that will be available to her.  Have to wait and see.  She's rating her current pain at a 10+ when asked by the nurses, so I really hope that comes down.  It sucks to watch a loved one suffer.  

As mentioned before, the surgery that they performed today removed a portion of intestine including two large tumors that are thought to be the cause of both her abdominal pain and bleeding over the past 6 weeks.  Multiple smaller tumors remain, but they will be addressed by a medical treatment (chemotherapy or something of the like) sometime after her brain tumor procedure which will likely be performed sometime near the end of next week (more details on that to follow as we get them).

I will be by her side through the night and will probably send out the next update sometime tomorrow.  They say they will be getting her up and moving tomorrow, I think mostly as an effort to get her body moving on the healing front.  

She is sleeping at the moment and I'm hoping she is able to sleep off at least most of the first night worth of pain.

Until next time...

Bobbie Update - Jan 16, 2009

Not a tremendous amount of information, but she is out of surgery, they removed a section of intestine including two large tumors.  Several small ones remain that will be treated with some sort of medicine therapy or possibly additional surgery down the line if needed.  More detail to follow.  We have not seen her yet, but she is in recovery being brought out of anesthesia.  

Bobbie Update - Jan 16, 2009

For those that were curious, the intestinal surgery is scheduled to be around noon today.  Bobbie is in pretty good spirits, but scared, as is to be expected.  They did her first follow-up brain MRI yesterday, which had been delayed due to the abdominal issues, and found 2 more spots in her brain (news that she did not, unsurprisingly, take well).  Those are going to be treated with the cyberknife  (video ) here at UNC and they are going to do that once her in-hospital recovery is drawing to an end for the intestinal surgery.  I haven't spoken with the neurologist or radiation doc as far as that goes - she was told about this yesterday while I was at work - so I don't have much in the way of details as of yet.  As a result of those findings, the surgical oncologist is only going to remove the larger, bleeding tumors from her intestine so that the brain procedure can be performed during her stay.  The removal of all intestinal tumors, he said, would likely result in an 8-10 week recovery time as opposed to the current expected 6 week recovery.  I don't follow exactly the reasoning behind everything because he came by to visit her prior to my arrival this morning, but he will be giving us a status following the surgery and I will forward an update at that point.

For now, we focus our energies on getting her through this afternoon's surgery.

Bobbie Update - Jan 14, 2009

I spent the entire day at the hospital with Bobbie today.  I'm pretty crushed tired right now, so this may be pretty short.

The important stuff:

Bobbie's surgery is set for Friday.  Don't know the exact scheduled time yet, but we should learn that tomorrow afternoon.  Her expected hospital stay following the surgery is 5 - 7 days.  Her expected recovery following discharge is 6 weeks of "don't lift anything heavier than a gallon of milk", though she may be back to somewhat normal function in 2 - 3 weeks.

Some info about the surgery:

There are 4 visible tumors in the tests performed thus far.  The surgery will entail an incision pretty much from her naval up for as tall as it needs to be for a "safe surgery".  They will feel out the entire length of her small intestine by hand and remove any additional tumors or unknown masses that they find.  As far as the rerouting of her intestinal track, it sounds like it will be tricky and pretty much a once they are in there decision.  The current scans show the known tumors to exist potentially behind her pancreas, so they will possibly cut a hole in her stomach and attach an intestine back at that point in an effort to not have to remove a portion of her pancreas.  All pretty strange sounding and a little frightening, but I had a great deal of comfort with the surgeon we spoke with who seemed very confident and competent.

Ok, that's it.  I have to hit the hay now.  I'll be working tomorrow and then likely spending the bulk of Friday through Sunday at the hospital.  Updates will follow as any additional info comes along.  I doubt that I will be sending anything additional out until after her surgery is complete on Friday or possibly tomorrow once we know when the surgery is scheduled.

Set your good vibes and prayers on high for Friday.

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.