Thursday, September 30, 2010


It took me less time to recover in the hospital from surgery than it did to finally write about it! I'm feeling the love from the people who have called and emailed with concern, and I'm so sorry it's taken me so long to do the post-op post!

Surgery went well. This is "minor" neurosurgery (if there is such a thing), so it was a short procedure and an overnight stay in the ICU. One of my good friends from church is on staff at the hospital, and another one used to be, so I managed to get the VIP treatment. I wasn't a typical ICU patient. We heard the nurses cheering as the physical therapist took me on a stroll through the hallways. ("Yay -- we have a walker on this floor!") I was also allowed to be released directly from the ICU to home after all of my discharge hurdles had been cleared.

The surgical pain is hardly noticeable, especially compared to what I continue to feel in the low spine when I sit or lie down (okay, let's just say it's a major pain in the bum). I seem to be recovering well, especially as I am surrounded by angels from church who bring in daily meals and cards and flowers and offers of help and continued prayers and faith. I am especially grateful that my kids are remembering this as the week when nice people brought over treats and took them on fun adventures after school.
I also learned that my husband wanted to see if four dozen red and white roses would fit in my favorite vase -- and they did!

I came home to a clean, comfy recovery room adorned with the lovely symbol of the red and white blood cells that we want to preserve during this next attack of radiation and chemotherapy! I go in for final markings and scheduling tomorrow, and the blast on my 'blast-oma will commence on Monday.

As always, Dr. Tompkins did an expert job installing the Ommaya reservoir. But he admitted that he is a lousy barber -- and he's right! The worst side effect of the surgery so far is a fist-sized shaved spot on top of my head above my right eyebrow, where hair used to start. But I'll take that. After all, the Halloween costume opportunities are endless!
For example:
(maybe with the horns askew...)
(just cut a baseball in half, or draw stitching on my son thought this was cool!)
(I call this one "The Phantom of the Opera-tion!")

(Really, just a matter of a green pillowcase and some sweats...)
(well, I'm just glad this one isn't Barney!)

Sunday, September 26, 2010

Hitting my stride

I have a date for neurosurgery to implant my Ommaya reservoir. (I keep remembering the name, because I put my hand to my cheek and say, "Oh, my! A reservoir!)

It's less than 24 hours away. 3:30 on Monday, to be exact. I check in at 1:30, and after surgery I stay in the ICU for at least 24 hours. Infection is a high risk complication, especially when cerebral spinal fluid is involved, so I will be getting antibiotics for 24 hours.

The wagons have circled on my behalf. My husband's employer is wonderfully supportive. (Really -- call your local Mary Kay consultant and buy LOTS of stuff!!!) Family members and church members are already lined up for meals, child care/entertainment, and anything else I can ask for. We have a new captain of the angels, and her primary burden is sorting through all of the duplicate volunteers. Prayers and fasting are also in abundance.

(Speaking of fasting, despite the 3:30pm schedule, I still have directions of NPO after midnight. So I'm there with you.)

Temodar and radiation will start the following Monday. I went in last Friday for a flu shot, a C-T scan, and another MRI. I also got tatooed with several tiny black freckles, and I will go in again this Friday for "final marking" (whatever that means).

My husband and son got their flu shots, too. My daughter is looking forward to hers. We spent Saturday scouring the bathrooms and placing hand sanitizers at every entry in our house. The kids have been retrained in laundry and dishwashing skills. We are doing all we can to prevent injuries or infections. I'll be the princess in the bubble.

For health and safety reasons, I was asked about the possibility of being released from my calling as a cub scout leader. There are legitimate concerns about whether this would be advisable for the time being, but I am finally hitting my stride in this assignment and am really enjoying it. However, sometimes when we get really good at something, the calling is released, and we look forward to another opportunity to serve in the church. I said that if the bishopric prayed about it, I would do whatever they thought was best.

The most important calling to me is that of mother, which is a calling I waited many anxious years for. My role was not to bring my children into the world -- that was the job of their angel birthmothers. (I couldn't possibly make them this cute, and I'm glad I didn't pass any DNA on to them!) My role is to mother them and nurture them and prepare them for all that is needful in this world. And they are at a very enjoyable age right now. We have had some precious teaching moments together. In fact, feel that I am hitting my stride. But hopefully this will not signal the release of my calling to raise them. This time I am praying about it, and I know that the Lord will do whatever He thinks is best. These are His children, too, and he will provide every needful thing for them, just as He has for me. (I just hope that I am one of those needful things!)

So off I go tomorrow, hungry but cushioned and blanketed with prayers and faith of so many. There is truly enough faith present to work miracles, so I am secure in knowing that the outcome of this process will be the right outcome.

Wednesday, September 22, 2010

The Mets Will Not Win This Season

I'm not talking about the baseball team from New York; I don't follow them.

"Mets" is medical shorthand for metastasis, which was the unanimous consensus during this morning's tumor board meeting. I have glioblastoma mets in my spine.

Dr. Fink asked me to come in afterward -- with my husband -- which sounded ominous at first, but it served a practical purpose. We went over the plan of attack, and there were a lot of details. (I was grateful that this wasn't the "get your life in order" talk.)

Because there is no defined scope of tumor cells beyond the visible mass, cyber-knife was ruled out for now. So was radiating the entire spine and cranium, because it would have a high risk of destroying bone marrow to the point where chemotherapy would be impossible.

I start Temodar chemotherapy on Monday. This is the oral stuff that began my treatment back in 2006. Tomorrow I meet with my neurosurgeon to arrange for implantation of an Ommaya port in my head sometime early next week. The Ommaya port goes in my head to facilitate repeated intrathecal injections of Topotecan chemotherapy.

I also start radiation treatments soon. I met the radiation oncologist today, who participated on the tumor board, and who is designing a plan for me. I go in on Friday for C-T scanning and marking* in preparation for 27 sessions that will probably start next week.

*I will have a low back tattoo. You will never see it.

I start taking steroids tonight, which means my next book will finally get finished. (Another answered prayer!) I'll be hyper and hungry, but it might provide some pain relief as I go through this process.

This is not a common situation, so we have no idea how (or if) this will work. But it's a plan, and it was clear that the doctors were guided, as we'd hoped and prayed they would be.

The Mets will not win this season. Even if we fail to destroy them, they cannot destroy anything but my body, which was intended to die someday anyway, followed by a resurrection. They can't destroy ME -- in fact, I think they are making ME stronger.

Monday, September 20, 2010

Now what should we call this?

What's on my mind?

Not much, compared to what was on my mind when this blog started nearly five years ago. Ho-hum, so the brain has been clear for more than three years.

That's a very good thing, but now all the attention has drifted downward into my lower spine. So what do I call this blog now?

Sittin' on a Scream?
Getting to the Bottom of Cancer?
Heads or Tails?

Let the brainstorming (yes--pun intended) begin!

We're Sittin' on a Scream

I have a spine tumor. It's right there with my nerves, which accounts for the intense pain when I sit or lie down or sneeze. I was halfway through the magic "5 years of remission" that insurance companies like to hear, when a new challenge was thrown my way.

Dr. Fink called me on Saturday, not wanting to wait until this Thursday to meet with my neurosurgeon. She knew a good neurosurgeon and was arranging for him to meet with me today.

I met with the neurosurgeon today, and he showed me in no uncertain terms that there is a tumor on the spine; one that is perfusing and lighting up on the MRI. (It looks like an ugly caterpillar woven among the nerves.) He also saw that the resection cavity in my brain included the ventricle that made for easy access for GBM to escape out of my brain and down into the spine.

He will meet with Dr. Fink at a tumor board meeting on Wednesday morning, to discuss next steps: whether to do an open biopsy to get more information about the cells, or whether to proceed imediately into cyber knife and possibly chemotherapy. Cyber knife therapy would be delayed if they did an open biopsy, so I'm hoping that won't happen. Now the suspense is not what I have, but how we will proceed to treat what I have.

Although the news was shocking and very disappointing, I felt an amazing sense of calm, and a feeling that this was going in the right direction. I continue to pray that the doctors will be inspired to know what to do for me, and I continue to be buoyed by the prayers of many who continue their faithful vigil on my behalf.

The neurosurgeon didn't discuss prognosis, and I'm glad about that. I decided to be the Mary Kay bumblebee. Mary Kay loved the symbol of the bumblebee, because bumblebees are not aerodynamically built to be able to fly. However, because no one told the bumblebee, it still flies. Maybe if no one tells me that I can't live more than a few more months, then maybe I'll just still keep on living.

Friday, September 17, 2010

Deja vu all over again?

MRI results today show a definite lump in my spine. No evidence of the blood vessel problems that we were hoping to find.

Spinal tap did not reveal tumor cells, but did reveal high protein levels, which could indicate either blood or tumor. It is possible that there are tumor cells sticking to the wall of the spine instead of floating in the spinal fluid. We just don't know yet, but it seems that we are ruling out other possibilities, leaving the scale tipping in the direction of glioblastoma in the spine.

I meet next Thursday with my neurosurgeon to discuss surgery in order to get more information. "We need a piece of this," Dr. Fink said, as she reviewed the images with me.

And then it seemed like deja vu: mystery symptoms and a series of tests before we finally land on something that sends me to the neurosurgeon. I can still remember his somber face nearly five years ago, as he told me that I had glioblastoma in my brain.

There may still be hope for an alternate outcome. We have to keep waiting and praying and remembering that the Lord knows what is best for me and for my family. We can't just assume that we know for ourselves. I can only pray that His will be done, and trust in it completely.

Wednesday, September 15, 2010

Testing, testing...

Something is there. Dr. Fink pointed out the white line on the MRI images that ran down my spine into a large white blob in the sacrum. Her recommendation was to review these images with a radiologist she holds in high esteem, and to do a spinal tap in order to analyze what cells are lighting up the screen.

(By the way, she looked at the different scans and said the discrepancy was due to the fact that the "grossly unremarkable" scan did not provide a complete view.)

If I have tumor cells in my spine, she has a game plan: a weekly chemotherapy treatment that would be delivered through a port in my head. She didn't discuss prognosis, and I didn't ask. (It's too creepy to discuss, and it's not her call, anyway.)

I left for a follow-up with my ear surgeon while she met with her radiologist. I silently prayed that she and the radiologist would be guided to understand this situation. When I came back for the spinal tap, she said that the radiologist offered another plausible interpretation: a blood vessel malformation causing bleeding in the spine. He recommended an MRA -- magnetic resonance/angiography -- which is a two-hour trip through the tube to look at things a little differently. That will happen on Friday. We should hopefully receive the spinal tap results on Friday as well.

Just like it was with my first MRI, my first spinal tap was nowhere near as bad as I expected it to be. As Dr. Fink collected the spinal fluid, she observed that it was clear and yellowish, and both made her happy. Only lab results will tell us what these cells are, but there is a possibility that there could be blood cells in there. This would also explain why ibuprofen has been ineffective in relieving pain. (It was probably making it worse.)

"I choose to be optomistic," was Dr. Fink's comment. (Not only was that blog-worthy, but it's a choice we can make in any circumstance.)

If I'm lucky enough to confirm this new possibility, the answer is a surgical correction. Never thought I'd be praying to have vascular surgery near my spinal cord, but it certainly beats having cancer there.

This experience has tested my body and my patience, along with the patience of my family (because I'm just so darn cute and lovable, and they want me to be okay). This experience may have tried to test my faith, but if it did, I didn't notice. I know that this process is in God's hands, and I trust that whatever comes of this will be right for His plan for me and for my family. I know that our needs will be met, regardless of what we must bear.

I still feel the strength that comes from so many prayers on my behalf. The Spirit provides a constant reminder of God's love, and so does the generous outpouring of care and concern from family and friends.

Last night my dad and my brothers came over, and together with my husband they laid their hands on me to give me a priesthood blessing. I am so grateful to have faithful priesthood holders in my family, who are close at hand and willing to help me in any way that is needed.

We remain in suspense until Friday's test results. Meanwhile, there is great peace in knowing that this situation is in the capable hands of a good doctor, and in the loving hands of my Heavenly Father, and supported by the praying hands of many good people who love.

Monday, September 13, 2010

This is NOT for blog ratings!

The saga continues...

I carried two phones around with me today, waiting for news. I even made the mistake of Googling GBM in the spine, and freaking myself out with the very poor prognosis for that situation. I buried myself in work and even a little bit of family history searching to keep me from going nuts.

Finally, when I was in a phone meeting with the FDA this afternoon, I was interrupted by a call from my neuro-oncologist's office. Dr. Fink wants to meet with me in the morning, and I should bring the films from this latest MRI.

When my heart started beating again it seemed as though my orthopedic surgeon had referred me back to Dr. Fink after getting the MRI results, and she was merely wanting to understand what was going on. It sounded reassuring rather than panicked.

I called the orthopedic surgeon's office to arrange to pick up the MRI films, and I also asked why I was being referred to Dr. Fink about this. The voice on the other end said she would call him and ask. A while later he called and apologized profusely for not getting to me before Dr. Fink's office did. (It was bad form, indeed.)

He said that the radiologist is still "highly suspicious" of GBM recurrence in the spine. He said there was a large mass in the sacral area. Since neither of them have expertise in GBM, they want Dr. Fink to get involved.

When I picked up the films at his office, I also picked up a copy of the radiology report for the MRI study that was done on my pelvis and sacrum a week prior to this latest nightmare. That report said that the sacrum and lumbar spine were "grossly unremarkable." ("Totally normal" isn't medically geeky enough, but that's what it meant.) It seems quite strange that I could go from "grossly unremarkable" to "large mass" in a matter of days. So I feel very reassured about putting all of this in front of Dr. Fink to see what she thinks we should do about this. I'm hoping that our visit will result in some answers instead of more questions.

I also feel reassured about putting all of this into the Lord's hands and letting Him do what should be done about this. I trust that all is ultimately well, regardless of what is happening right now.

I promise I'm not doing this for blog ratings. But stay tuned!

Sunday, September 12, 2010

Another 12th!

Still no word about Friday's MRI, and I have plenty of pain to remind me that there is an important question waiting to be answered.


Today is the 12th, which means another month of survival is behind me (hopefully with many more ahead)! Three more to go until I complete my HIGH FIVE year!

Friday, September 10, 2010

Head, shoulders, knees and toes

(Well, sort of.)

My daughter's kindergarten class has been doing the "head, shoulders, knees and toes" song this week, and she likes to come home and show it off to us.

The song was going through (what's left of) my mind during the three-hour spontaneous MRI today. Despite being "totally booked," the imaging center spoke with my doctor and managed to squeeze me in immediately for a marathon set of scans: brain, neck, upper spine, and lower spine. (So I was singing, "Head, neck, upper back, lower back")

At first I protested the brain scan, referring back to my August scan, which was good enough to earn me a pass until February. I explained that without a perfusion study and prior history, they may be confused by all the mess they will see in my head (like my resection cavity, fried mastoid bone, and a whole lot of scar tissue). The best I could do was give them my neuro-oncologist's phone number in case they saw anything that freaked them out.

This scenario gave me hope that perhaps I was merely dealing with a hyper radiologist who only noticed my glioblastoma history when he was writing his report after Wednesday's MRI, and who wanted to err on the side of caution when he couldn't tell the difference between a tumor and a transitional vertebrae.

(If that's not the case, he may have saved my life.)

So off into the tube I went, carrying thoughts of prayers being offered on my behalf (thank you!) and reliving precious memories with my family, to help take (what's left of) my mind off the pain as I lay flat on my back for three hours.

And between studies, as they would pull me out of tube to readjust frames or inject contrast media, I would always re-enter the tube with gratitude that I fit all the way in there quite easily!

I have no idea what this will reveal. But I remember what I told my son as he accompanied me for my MRI in August: "We will either learn that everything looks great--and that's happened a lot lately--or we will learn that we don't have enough information and need to do more testing, or we will learn that there is something new to take care of -- and it's good to know if we need to take care of something. "

Until we know, I feel like a teenage girl on a Friday night, sitting by the phone and hoping it will ring soon.

However, I know that this situation is in the loving hands of my loving Heavenly Father, and I trust Him with everything. I only pray that His will be done, and that I will know what to do. In return, I have peace in knowing that all will ultimately be well, even if this latest development gets ugly.

I still shed a tear or two this morning, as this is a time for emotions to rise to the surface. But these were not tears of frustration or anger or fear. Just a wistful feeling for my family, who must endure this with me. And sentiment about having to say goodbye to karate and clog dancing and bike riding and running a least for now. Hopefully not for long.

My prayers to avoid complacency have definitely been answered!

One more more tumor?

The radiologist called my orthopedic surgeon to say that there is "something" on my spine, and he is suspicious of tumor recurrence. Stay tuned for another MRI on Monday...

Wednesday, September 08, 2010

Feet First

I prayed that I might avoid complacency, now that I have been excused from brain MRI scans until February.

The answer to my prayer came in the form of unexplained low back pain that got increasingly worse. I haven't slept much in the last several weeks, because of the pain. And yes, I have a great neurostimulator and a Sleep Number bed and plenty of Advil and I do a lot of walking. I can't decide what was worse -- dealing with the pain and sleepless nights, or wondering what could possibly have caused this to happen.

My gynecologist and gastroenterologist were each able to rule out anything that would land in their turf. The gastroenterologist ordered an MRI of my pelvis and sacrum and suggested that I take these to my orthopedic surgeon.

The orthopedic surgeon glanced at the radiologist's report but did not look at the MRI images or seem to have interest in them. He immediately diagnosed sciatica after a brief physical exam, and prescribed a corticosteroid, with plans to explore further if the prescription didn't help.

After I picked up the prescription and reviewed the accompanying information, I noticed many warnings about use in patients taking seizure medication. So I called the orthopedic surgeon's office, and they decided that I shouldn't take it. Instead, the doctor decided to order an MRI of the lumbar section of my spine. I had that done today.

Yes, two MRI's in one week, and both had me going in the tube feet first this time! My head stayed outside the tube, which was kind of a weird new experience.

I'm not sure what he is looking for, but two things came to (what's left of) my mind. One was a reminder that I was diagnosed about twenty years ago with a transitional vertebrae that would probably cause a problem with my back in about twenty years. The other was a reminder that brain tumors generally stay within the brain...but can also spread into other parts of the central nervous system (like the spine). I think they are both plausible causes of sciatica pain, although the former is (hopefully) more likely than the latter. Either way, I'm hoping the MRI will provide the answer and a road map to relief.

Unfortunately, I was told that my orthopedic surgeon only reads incoming radiologist reports on Tuesdays and Fridays, so I have a while to stand around (sitting is too painful) and wait for the verdict. Whatever it is, and wherever we go from here, I only pray will reflect God's will. I can always trust in that. If it's an easily correctable problem, that would be another reason to celebrate. If it's a major problem, then we found something that needs major action, and I am ready to jump into that...feet first.