Friday, September 28, 2012

Moving out of the unhappy village

Jenna is adjusting well to oral pain meds and is officially off the epidural and IV meds - so no more being extremely loopy - talking to Gandalf and Frodo and she can leave that unhappy village she was apparently living in...(she was chatting to characters in Lord of the Rings as if she was part of the movie and told Craig she lived in a village - but it was an unhappy village).

Her chest X-rays look good, she is disconnected from all machines and is getting up and moving around much more easily - Craig said she is finally acting normal. :)

She should be heading home today - she is jumping in the shower now and awaiting discharge papers! WOO HOO!

Depending on how she is feeling - this may be my last post...we shall see! :)


Thursday, September 27, 2012

Coming home?

Jenna is making great progress! 

She has been up multiple times to walk around - mooning everyone in her lovely hospital gown. After many short walks - she was able to make it a full lap around the floor - but with a robe this time, so no more peeks at her butt for the hospital staff.

She has been able to get up on her own to go to the bathroom and even got a fancy sponge bath and also enjoyed some fine hospital dining ;)

She is having a rough time with the physical therapy - but they have adjusted her pain meds and she is starting to feel better, she's a bit loopy - but comfortable.

One of the doctors told them last night that they may be able to head home today - nothing is set in stone, but the doctor seemed pretty optimistic - fingers crossed!!!! The chest tube was taken out this morning so she's definitely headed in the right direction.

Uh oh - guess I better go clean her house like I promised - she will be home sooner than I thought! :)

Talk to you soon -


Wednesday, September 26, 2012

A feast fit for....someone who just had surgery

After Jenna's surgery was complete - they had some trouble stabilizing her blood pressure -so she wasn't taken up to her room until after 9 p.m. last night.

Once she was in her room - she was finally able to eat some food - as Craig put it..."A feast fit for...someone who just had surgery..."   Applesauce and water - oh yeah!

She's doing well - but her shoulder and throat are extremely sore and she is coughing quite a bit as they did have to collapse her lung during surgery. Another downside to that is the intense amount of lung exercises needing to be completed to build that lung back  - 10x an hour every hour - and apparently it doesn't feel so great - but she says it is bearable (of course she does)!

They may be able to remove her IV today and they have already turned the suction off the chest tube which is one of the first steps to removing the actual tube. Once that is removed - they can remove the epidural.

She will continue to have chest x-rays to monitor her progress - but they are hopeful she will be able to head home on Friday!

More updates as I get them....


Tuesday, September 25, 2012

Headed to recovery....

WHEW! FINALLY! Just got a call from Craig - she is out of surgery and everything went well!

Now that everyone has let out a big sigh of relief - here are the details:

The Mayo Clinic and the Cancer Center's pathologists agree that they think it may not be a spindle cell sarcoma, but may actually be a Neurofibroma (short version - based on what Craig said - that would mean it is benign....I will have to update that if I am wrong - he was breaking up - it was hard to hear). Based on this fact - they took out a much smaller area than originally planned when they thought it was a sarcoma.

Basically - we will not know for sure what the tumor is for a couple weeks - at which point they will reassess whether or not they need to go back in to make a larger extraction or if they will go the route of radiation.

I will keep you posted as I get updates from Craig - but so far - so good! YAY! :)


A Box of Rocks

These past few weeks have been a complete whirlwind - I don't even know how much time has passed since the first random conversation with Jenna about her ribs popping out to sitting with her at the doctor's appointment diagnosing her with cancer...and here we are now - she's in surgery and I'm waiting (not so patiently) to get an update from Craig.

I have tried to remain calm throughout this process - Jenna has always been such a solid support system when I needed her to be - so I did my best to return that favor....but let's be real...we're all scared. The thought of someone we all love being sick is terrifying - especially someone as intense and strong as Jenna.

So - my attempts at being brave have been completely lost as of last night - when I think it all finally sunk in...I feel like I swallowed a box of rocks and they have decided to camp out in my throat. If Jenna were reading this right now - she would tell me to relax and stop being so dramatic!

To avoid any further suspense - I must say - I do not have an update yet, but am writing only to tell people that...the only thing harder than waiting to hear news is people asking "Hey...have you heard anything yet?" (don't worry - I would be doing the same thing).

BUT...Craig sent me a picture of our beautiful Jenna as she was being brought back to surgery that I thought I would share.

We should have an update shortly....keep the positive thoughts/prayers (whatever it is you believe in) coming her way!

(Jenna created some great sigs for me - that I can't

Talk to you soon -


Sunday, September 23, 2012

Ahoy Seattle!

We made the trek to Seattle today, arriving just around dinner time. Tomorrow my mom is flying into town to help us out, and we'll visit Great Grandpa, and then attend the pre-anesthesia appointment in the evening. That's when i'll find out what time we will do surgery on Tuesday. I'm getting super nervous now, but am looking forward to spending a few weeks wearing sweatpants.

Wednesday, September 19, 2012

Meet Andrea

I'd like to introduce my very awesome friend Andrea!

Andrea will be updating the blog for me when i'm unable, starting Tuesday.

Monday, September 17, 2012

The date has been set!

Our trip to Seattle was awesome! we went up to Seattle on Saturday, trying to spread out the drive so JT didn't have to be in the car twice in a 24-hour period. We had a great time with our family there, and JT had a blast with his cousins.

On Sunday morning, Dr. Meyers called to tell me that while reviewing all my medical records, he very much agrees that post-operative radiation is the best option for me. I was surprised and impressed to hear from him on the weekend, and simply to say that he agreed with my choice, as he knew I wasn't 100% confident in it.

Monday morning found us at the UW Medical Center, awaiting a meeting with my surgeon, Dr. Mulligan, and his PA. They were very nice, and informative. Their first discussion with me was to encourage me to wait until after the surgery to have any radiation therapy that might be needed (woo hoo! we're all on the same page). They had already spoken to Dr. Meyer as well, and were relieved that I had decided on post-op radiation.

We discussed how the surgery would go, and what my recovery would entail, and decided on September 25 for the surgery date. The evening before, I will go visit the UW Pre-Anesthsia Clinic for an evaluation. Then on surgery day, I will check in two hours before surgery for prep. I'll get a light sedative, epidural, and then general anesthesia. The doc will make a ~6" S-shaped incision in my back and remove the diseased rib from the vertebral join at my spine, and remove the back section of the rib. It's likely he will also remove the ribs above and below that bad rib. My right lung will be deflated during the operation, and i'll have drainage tubes at the site for several days afterwards.

I'll spend at least three days in the hospital afterwards, then will be free to go home. It's likely we'll stay in Seattle with family for a few days, until we are ready to attempt the drive home. The I will enjoy 4-6 weeks of at-home recovery, watching re-runs of my favorite sitcoms (now might be the time to sign up for cable...).

So far, i'm not really nervous about the surgery, just happy to have a solid plan of action and schedule. I imagine the nerves will come closer to the surgery date.

Thursday, September 13, 2012

Today's appointment was great.

I feel like I spend all my time in doctor's appointments these days! Today I met with Dr. Meyer at Northwest Cancer Care in Kennewick. He'll be the doc administering my radiation therapy, should it be necessary after surgery. My lovely mother-in-law came with me to this appointment, as my hubs couldn't escape work on short notice. We were there for about an hour and a half, and spent an hour of that with the doctor. He's great.

He listened carefully, reviewed the imaging right then, and discussed it with me, patiently answered all my questions in great detail. For the first time during this whole adventure, I feel fully knowledgable on what is coming up.

He fully supports my decision to have the radiation therapy post-operatively, and will monitor the scheduling of the surgery and pathology reports in the mean time. Three week's after surgery, we'll meet to establish my radiation regimen, including getting new imaging, tattooing on the guide dots for the laser beams, and discussing the type and shape of radiation beams he wants to use. Therapy will start about a week later, assuming my skin is properly healed from surgery at that point.

Wednesday, September 12, 2012

To Radiate or Wait?

So the decision on whether to do radiation therapy before or after surgery is mine. My doc says he thinks the choices are relatively equal in my case. His patients typically get pre-op radiation therapy, but its also usually more black and white. My case is more grey. Enter the pros & cons list.



  • lower radiation dose, shorter treatment period, smaller treatment area
  • "Sterilizes" the area before surgery

  • delays surgery for 8-9 weeks. That's a long time to keep this tumor and the pain.
  • Can cause healing problems after surgery
  • May still need a "booster" round of radiation after surgery
  • Can complicate surgery


  • Surgery will be sooner
  • No "booster" sessions. Just one round.
  • May not need the radiation if surgery produces clear enough margins.
  • Longer treatment time, higher dose, larger area
So, with the input of my husband and family, and listening to my own gut, i'm going to go with post-op. I think the best thing to do it to get this thing out of my body before we cross the line to high-grade, or it gets worse. I know that means more radiation, but the radiation oncologist says that this area is easy enough to treat, and the added risk is minimal.

So the next step is to meet the thoracic surgeon that will work with my doc to do the surgery, and get this thing scheduled!

p.s. At the request of my loved ones, I added a subscription option to the left.

Tuesday, September 11, 2012

It's not high grade.

It isn't high grade! It isn't low grade either, actually, its intermediate. but still...

The scale is 1-5 = low grade. 6-25 is high grade. My tumor is a 5.4. So it's borderline, but it could be worse. So much worse.


Now we are debating whether to do radiation therapy before surgery or after. I think I will go with after, as there is a chance it won't be needed at all, and I want this tumor out sooner rather than later. I'm waiting for my doctor's final opinion on the matter, but I would rather do surgery first so there is no chance of the cancer progressing while we do radiation therapy.

More later, we're headed home now.

Sunday, September 9, 2012

Staying Thankful. Getting Anxious.

It's difficult during these waiting periods to stay hopeful. At the moment we're waiting to find out how aggressive the tumor is, and i'm having trouble waiting patiently. So I decided to make a list (because that's how I roll) of all the things currently concerning me and all the things I am thankful for.

The Thanks (because the positive should always come first)

  • My husband is amazing. 
  • I am surrounded by the most thoughtful and generous people I could ever ask for. My co-workers have been beyond generous and caring, and my friends and family have been here for me every step of the way.
  • The tumor is relatively small for a Sarcoma.
  • I have access to the best doctor in the world to treat this, and his team is amazing.
  • The University of Washington has research studies about Sarcoma in progress, giving me access to reduced cost/free studies that will assist in my care, and allow me to contribute to the knowledge of this rare cancer.
  • We caught it early.
The Concerns

  • I really, really, really, can't handle the thought of chemotherapy. The idea of this being a high-grade tumor, requiring chemo is the most terrifying thing. A year of treatment, that may or may not work, that will cause me to lose my hair, miss out on so much participation in my son's daily life, and generally abuse my body.
  • Having up to three ribs removed won't be an easy surgery. What will this mean for the rest of my, hopefully long, life? will I still be able to stand straight? run? As the internet is only useful for finding horror stories, all I can find is tales of people who had the same surgery and ended up with fibromyalgia from the nerve damage, and can't live without pain killers. 
  • How big will the scar be?
The goofy thoughts (i'm probably not going to be able to use my right arm for awhile, so...)

  • Who is going to help me tame this crazy hair of mine every day?
  • How hard is it to learn to write with my left hand?
  • How long is it going to take me to type a damn email?
  • Will my golf game improve without these ribs?
  • How long before I can play nintendo again?
  • What kind of tattoo can I get to cover that scar?
We'll know more on Tuesday!

Thursday, September 6, 2012

PET Scanned and Home Safe.

The PET Scan went as well as it can. We don't have results yet, but my hopes are high that it will show my cancer to be low-grade.

The scan involved being starved for 12 hours, so luckily my test was at 10 a.m. Then we checked in at the UW Medical Center, and I was given ANOTHER IV. I'm very sick of being poked with needles, but I think this is just the beginning, and probably the least of my worries. The IV was used to administer a radioactive glucose mixture, which I then let my body process for 45 minutes while my husband and I watched an episode of Top Gear (The Bolivia Special!).

Once I had let the glucose process, I was taken to the PET Scan room, which is like a really thick CT Scanner, where I had to lay with my arms above my head for 45 minutes while the machine watched which areas of my body were using the glucose, so we can see how much the tumor is stealing from me.

Then we drove home! my awesome sister-in-law, and mother-in-law are being a huge help with our little man while we attend all these appointments.

Now we're home and back to work while we wait for test results. We'll be back in Seattle next Tuesday to determine a treatment plan and try to move forward. In the mean time, my friends and co-workers have come through in amazing ways, and their support and positive attitudes are making this easier than I could ever hope for.

Tuesday, September 4, 2012

A series of tests.

After my appointment at the Seattle Cancer Care Alliance this morning, my care team was able to schedule an MRI for this afternoon, so I wouldn't have to make a second trip to Seattle. Yay!

The MRI was a claustrophobic experience, and I can't say I want to repeat it. The machine sounds like it is going to fall apart, and i'm told that is what its supposed to sound like. On the up side, the techs put on an awesome Pandora country station for me to listen to while stuck in the machine for more than 30 minutes.

Tomorrow morning, I will visit the University of Washington Medical Center to have a PET Scan, which will measure the amount of glucose my tumor is absorbing. Combined with the MRI and biopsy samples, my Dr. will have a much better idea what we are dealing with, and how to treat it.

We're scheduled to come back to Seattle next Tuesday to discuss treatment plans and start scheduling.

That's all for now!

Not much to report here.

We met with Dr. Conrad at the Seattle Cancer Care Alliance today, and he seems to be a good choice for my care. Unfortunately, we don't know enough yet to determine a treatment plan. He ordered another round of tests, including a PET scan and MRI. He is also trying to get a hold of my biopsy slides, so his own pathologist can review them. 

He is trying to determine if the cancer is high-grade (fast and mean) or low-grade (slow and less mean). He should be able to tell after reviewing this week's tests. 

He will then hold a medical board review with his team to discuss my case and determine a treatment plan. I will meet with him again next Tuesday to review the treatment plan and take the next steps. 

Monday, September 3, 2012

So, I have cancer.

The past three weeks have been a whirlwind of stress and emotions, and the next few weeks aren’t promising to be much easier.

I’ll start at the beginning…In February, I remember my rib popping out of place and bothering me. No big deal, I went to my chiropractor and he put it back. Easy.

Then in March, the same rib popped out of place when I turned around in my car seat to take care of my son. This time, it also felt like it broke. Even after the rib was put back, a sharp pain in my side accompanied deep breaths and certain movements. As far as I knew, there isn’t much that can be done for broken ribs, so I let it be, went on vacation and eventually it all healed up (or at least it stopped hurting).

Fast-forward to mid August, on a very average day at work, while sitting at my desk, I felt the rib pop out of place again, and felt a crack again, in a similar, but not identical place. I wasn’t sure it was the same rib, but they were certainly close to each other. I going to ignore it, but then I had lunch with my good friend Jennifer, who was celebrating her one-year check up, where the cancer she had fought was still gone.

We were reminiscing on when her symptoms started, and she was ignoring them, because everyone around her told her it was probably something benign. I darn near yelled at her to go to the doctor, because she was ignoring important signs from her body.  So after lunch, I decided to take my own advice and made an appointment to see my doctor the next day.

He was bothered that the same rib(s) having so much trouble in one year, and he could feel swelling where I thought the rib was broken. So off I went for a chest x-ray. I looked at the X-Rays with the tech (a pal of mine), not that I knew what I was looking at, and even my layman’s eyes could see something was wrong. The rib that was causing me pain had a large blight on the x-ray where the bone couldn’t be seen. Uh oh.

The next day, the doctor called and confirmed my fears that there was an abnormality on my rib, and we needed to look closer. This abnormality was breaking my ribs from the inside. It appeared that two ribs had been affected, because the abnormality on my 10th rib appeared newer than the one on my 9th rib. Whatever it was might be spreading and we needed to find out what it was. So my doctor requested that I go get a LOT of blood work done, and he scheduled me for a CT Scan and bone biopsy the following Friday – 8 days away.

When I asked my doctor what it could be, none of the answers were good, but some were terrible. Multiple myeloma, cancer, metabolic bone disorders, thyroid issues, or a benign bone cyst. But the fact that the abnormality was on two ribs wasn’t a good sign, as the less scary options wouldn’t have spread to another rib.

So enter another good friend and co-worker, Dana. Who went with me to get my blood drawn and then we went out for wine. Lots of wine. Then pizza. The blood work was clearly extensive, and each little tube was marked “PRIORITY. MUST BE PROCESSED IMMEDIATELY”.

Two days later, my doctor called again, with the first good news of the week. My blood work looked awesome. My thyroid was functioning normally, and the other tests were all pretty normal. So the chances of my problem being benign went up, and the chances of it being cancer that was advanced went down. It could still be cancer.

So we waited until the next Friday. Anxiously, without much sleep, and with a lot of milk shakes.

Friday, August 24th, I went in for a CT Scan and bone biopsy. The staff at Kadlec Regional Medical Center hospital was wonderful, efficient and kind. I would have multiple CT Scans, they told me. First, they took the scan without iodine contrast dye. Then they did it with the dye. At that point, they let me see it, and there, on my right, posterior ninth rib, clear as day, was a tumor, that looked to be about the size of a golf ball. Crap.

My CT scan, showing a tumor approximately 4.0cm x 2.0cm.

They took me to a waiting room, where I would get ready for the biopsy, while the radiologist took a look at my CT scans and decided how to perform the biopsy. Then, back into the CT scanner I went. This time, they would use the image to guide a biopsy needle to the tumor and bone to take samples.

When the nurse asked me if I wanted conscious sedation, or if I was happy with local anesthesia only, I almost laughed. Of course I wanted the pain killers. I can’t imagine anyone wanting to feel needle hit  bone. Thanks to an awesome combination of Valium and Morphine, and I didn’t even feel the biopsy. Three or four samples were taken, and sent off to the pathology department, and I was sent to recovery.

The biopsy left me with some discomfort and bruising on my back, and hurt a bit for a few days, but healed up nicely. On Monday, the doctor called to tell me that, while my results weren’t in yet, the pathologist had notified him that he was sending my biopsy samples to the Mayo Clinic for review, and that I would receive his (the local pathologist’s) findings the next day. Crap.

In the meantime, more good friends showed up to help keep me distracted. We made baby blankets for the many babies due in the next few weeks, drank wine, and played classic Nintendo (Dr. Mario and Bubble Bobble). We had a lot of fun. 

The next day, I was so nervous I couldn’t get much done, and went home early.  My doctor called at 3 and asked me to come in that afternoon, so we could talk about the results. Double crap. I doubted he would call me in to tell me the tumor was nothing but rainbows and flowers.

My husband and son had been gone since Sunday, visiting my father-in-law down in California, while my husband attended some training down there. After I finished a serious crying jag, I decided I wasn’t about to go to that appointment alone, so yet another good friend came to my rescue. My very good friend Andrea blew off the rest of her busy day to come with me. We have the same doctor, so it was awesome to have a friend with me who could read the doctor, and knew what was normal and what wasn’t.

His first words to me were “it isn’t as bad as it could be. “ I have cancer.

I have Spindle Cell Sarcoma, and here is what I know about it:
  •         It’s very very rare. Only about 80 cases occur in the U.S. each year. This means there aren’t many doctors that know how to treat it, and that there is very little information available on it.
  •         It is characterized and named for the shape of the cancer cells, which look like spindles (Sleeping Beauty tried to warn me about spindles).
  •         Its cause is unknown.
  •          Stage 1 isn’t so bad. If you catch it early, you can surgically remove it and, so long as you get it all, you shouldn’t see it again.
  •         If you don’t get it all with surgery, it comes back with a vengeance.
  •         If you don’t catch it early, its pretty much impossible to stop.
  •         It grows slow, but steady, and normally occurs on the long bones of the body.
  •         The rib is a weird and complicated place to have it.

The good news from the pathologist is that mine appears to be stage one. While the tumor is large (4.0 cm x 2.0 cm), there is little pleomorphism, which is the term for how mutated the cells are. Mine are getting spindly, but it isn’t too bad yet. That’s a great sign.

The other good news came from my doctor (who caught it early and shall now be known as super-doc): The best doctor in the western U.S. for sarcomas is in Seattle, just a few hours away. People fly from Chicago and LA to see him, and I am much closer. My doctor had referred another case of this cancer to him before, and had been happily monitoring the man for 10 years without any sign of recurrence.

So I have been referred to Dr. Chappie Conrad at the University of Washington Medical Center, where he is a department director, and also director of the Seattle Cancer Care Alliance’s Sarcoma department. Dr. Conrad is the best at this, and I’m told he also knows how to remove tumors from difficult areas, like the inside of a rib.

Calling the friends and family who needed updates was incredibly difficult. It’s a horrible story to have to tell, and I imagine it sucks just as much to hear it.  So I didn’t get to as many people as I wanted.

My appointment with Chappie is on Tuesday morning, and I’ll be meeting with him and another orthopedic surgeon, who will develop a treatment plan. The treatment will most certainly involve surgery, to remove the tumor and the rib it is attached to, as well as the soft tissues and muscles that the tumor has formed in.

In the mean time, the pain in my rib is steadily getting worse. I can’t make it past 2 p.m. anymore without something to relieve the pain and pressure. The longer I sit, the worse it gets, so I’m trying to stretch a lot , and taking Aleve to help with the pain. I’m glad I don’t need anything stronger.

Since I am so very lucky to have many friends and family members who care about me (as evidenced above), I figured this would be the easiest way to get the information out to those who want to know. So I’ll keep this blog updated when I can.