Tuesday, October 16, 2012

I just finished my last appointment.

Today is a big day, because I attended my final doctor's appointment for this stupid tumor. The hubs and I just left the Northwest Cancer Care Office, where we had a final wrap-up appointment with Dr. Meyers, who I would recommend to anyone who actually needs cancer treatment. I'm so very glad that I don't.

So with that now done, I have no more scheduled doctor's appointments, and no obligations to follow up with any medical practice, unless something goes wrong with my recovery.

Speaking of recovery, it's a long, painful, and slow process. I feel like i've taken a few steps backwards this last week, and I am pretty sure its my own fault. As i've felt better, i've been trying to do more things, get out more, etc., and each ambitious day is followed by a terrible night and day after. Those days have been filled with lots of pain and copious amounts of frustration. I've also slacked on my physical therapy and breathing exercises, because I had started to feel more normal again. Bad choice.

Today is the start of my 4th week post-op and I am bored and frustrated stuck in bed, where I can't get comfortable anyways. It's hard not to overdo it, but I pay dearly when I do, so its back to bed and jigsaw puzzles for me.

Tomorrow is the first day I will be home alone all day. JT decided this weekend that he is sick of hanging out with boring grownups all day, and asked if he can go back to daycare, and Craig has all day meetings, so it's just me and the dogs!

Friday, October 12, 2012

The cost of great care.

I got the itemized statement (pre-insurance payment, thankfully) from my stay at the UW Medical Center. I'm so thankful for my very excellent health insurance, because this stuff isn't cheap:

Pharmacy - $3,013.61
Daily Service (nursing) - $5,967.00
Supplies - $2,583.00
Laboratory - $995.00
Pathology - $497.00
Radiology - $1,115.00
OR Services - $14,996.00
Anesthesia - $3,352.00

The list goes on, and the total exceeds $35k. That doesn't include the doctor's time, the post-op visit, and a lot of other outstanding bits and pieces.

It's hard to believe I consumed $3k in drugs in 4 days, but as Andrea mentioned in her posts, I was pretty freakin out of it, so clearly they worked. My nurses were worth a lot more than $6k.

Yay for a great job with great benefits!

Thursday, October 11, 2012

Thinking back on a misdiagnosis.

A friend asked me if I am upset with my doctor for telling me I have cancer, now that I know I don't. The answer is no, i'm not.

Here's the thing, the pathologist looked at the cells from my biopsy and saw spindle shaped cells. That led to the diagnosis of spindle cell sarcoma. The doc told me he was 80-90% confident in the diagnosis based on the biopsy, and the pathologist was getting a second opinion from the Mayo Clinic.

What I actually had, a neurofibroma, is also made of spindle shaped cells. So from my view, i'm thankful that he went with the worst-case diagnosis. While I am not sure anything can prepare you for the emotion and depression that comes with being diagnosed with cancer, that initial diagnosis made it possible for me to be treated by the best doctors in the nation, within a month. My surgeon is the best thoracic surgeon around. He and Doc Conrad are directors in their areas for the UW Medical School. These are the guys who are entrusted to teach their skills. I couldn't have asked for a better care team.

I'm ridiculously relieved that the first diagnosis was wrong, but at least I was prepared for the worst, and it opened the doors to top-level care. He followed my case very closely, even when I was out of his care. Our doctor here in Richland is fantastic, and I will continue to trust him with our care and recommend him to every family I can.

Doctors are humans, they do their best, and they do it in a high-pressure environment.

Wednesday, October 10, 2012

Our annual trip to the pumpkin patch.

The progress of recovery.

I keep saying I will post about my recovery, and finally I am. Picking up where I left off after leaving Seattle for the Tri-Cities:

It was so nice to get home. There is such comfort in being in your own space. Especially when you walk in and that space is decorated with balloons, 'Welcome Home' banners, and presents from a sweet friend.

It took some effort on my mom and Craig's part to get me comfortable, but they're amazing. When Craig and I bought our living room furniture several years ago, we never expected the oversized chair that contained a twin sized pullout bed to be so useful. I'm able to be tucked into that bed, watch football, and interact with my family when i'm not sleeping. My husband also rigged it so I can sleep propped up, which reduces the back pains.

Luckily, I have these two sweethearts to keep me company. JT keeps coming over to me to say "I love you, my beautiful princess". I'm a very lucky mom.

JT won't let me take a photo without that cheesy smile. His very sleepy dad hasn't slept through the night since my surgery, to take care of me.
My sweet Natasha has been faithfully on or under my bed this whole time. she's a great foot warmer.
The first few days, my medicine regimen included 3 oxycodone pills every three hours, combined with alternating ibuprofen and tylenol. Because the oxycodone makes me sick, I also got to take nausea meds. Between Craig and Mom, someone had to get up every three hours through the night and give me my meds. Since then, we've slowly progressed to taking 2 oxys every 4-5 hours, which helped me go from sleepy zombie to sedentary but awake and lucid. Now days, i'm down to one or two oxycodones or hydrocodones every 6-8 hours, no nausea medicine, and some ibuprofen and tylenol.

The after effects of surgery have been interesting:
  • the nerves in the front of my stomach are looking for the nerves that were damaged and removed during surgery in my back. Since they can't find other nerves to talk to, they are instead hurting non stop. It's like having that pins and needles feeling when a limb falls asleep, but it occurs every time anything touches the right side of my stomach, including clothes, any arm movements,  and showers are a real experience. 
  • My side is numb. The surgeon warned me it would be, but its still weird to put my hand on my skin and not be able to feel it. 
  • The stitches where the drainage tube was were huge, and itchy, and since they were on my side, there was no avoiding rubbing them with my arm. I was delighted to get them out on Monday.
  • The incision on my back has been...oozing....since surgery, which is also very normal, but feels gross. 
  • When I lay on my back, I get strange stabbing pains in my side, and a tight band of pressure forms around my ribs, making deep breaths darn near impossible. 
  • I coughed the other day and tore some muscle in my abs. fun stuff. 
  • My shoulder is very sensitive right now. It was injured when I was stuck on my side for three hours during surgery, and many hours more for recovery. If I approach any position like laying on my left side, shooting pains in my shoulder warn me that is a bad choice.
  • The drugs make me very sleepy, in addition to some other side effects.
I left the house for the first time last Wednesday(?) to get a mani/pedi with my mother in law. We had a good time, but apparently sitting in a massage chair getting pampered is tiring, because I passed out as soon as we got home :). 

On Sunday, we went for a walk to the neighborhood park, which wore me out beyond belief. I was breathing heavy before we made it off our block. I can't wait to regain my back strength and stamina.

Today we took JT to the pumpkin patch to prepare for our Halloween display this year. It's going to be awesome, so if you are in the Tri-Cities area, plan to stop by on Halloween! It was fun, but again, exhausting. It's amazing how little I can do without getting winded. I was back in my sweatpants and in bed within 10 minutes of getting home.

I'll go back to work somewhere around the end of October or first two weeks in November, depending on how I feel, and when I can go all day without a nap. :) In the mean time, I can be found on my pull-out, watching TV series on netflix and doing jigsaw puzzles.

P.S. checkout these beauties that came with our dinner delivery from our lovely friend Linda.

Monday, October 8, 2012

Oh Baby! It's Benign!!!!

It's benign! It's benign! It's benign!

So yeah, it's a BENIGN nerve sheath tumor called a neurofibroma, which normally occur in soft tissues. They only need to be surgically removed when they are causing a problem (like breaking a rib from the inside). The pathology report noted that the tumor had consumed 98% of the rib it was on.

There will be no radiation therapy!!!

There is a chance of reoccurance, but not much of one. Which means that as soon as I recover from this surgery (4-6 more weeks), I am good to go.

As for recovery, i'll post the details of the last few weeks soon, but i'm slowly getting better. Now that I am off the major narcotics for the most part, my eyes are working again and I can do little things like type and text.

I'm going to go celebrate (as much as one can when one can't drink, dance, or go crazy in any way). So, in closing:

Dejavu: return of the nerves

We're in the waiting room at the surgeons office, for my post-op check up and I'm feeling the same a nerves I felt the first time I was diagnosed, because this time we know for sure. This time they've dissected the tumor and can see what is going on.

Logically, I think it will be a neurofibroma, because two of three pathology reports said it was. But that logical belief hasn't made it through my brain yet apparently, because I'm scared out of my mind right now. Worse than the first time, maybe, because if it IS cancer, there is a chance they will have to do more surgery and that is a terrifying prospect.

Wish me luck.

Sunday, October 7, 2012

We interrupt this blog to give thanks.

There are a lot of people who have shown kindness and generosity beyond all I could imagine during this rough patch. I can't possibly name everyone who has stepped up to help in one way or the other, but i'm going to try!

So, a huge thank you to:

  • My family, both blood and in-laws: for the love, support and generosity. To my parents for flying across the country to take care of me. To my mom for staying in the hospital with me, getting no sleep, and caring for me non-stop. To my dad for spending a week cooking meals and entertaining JT, so he never felt the lack of care from me. To Kevin and Xandy for opening your home to us time and again, caring for JT, and generally being awesome. To Chris and Louise for all your support, dog sitting, babysitting, and help with our home. We're so lucky to have you so near.
  • The Fetrow family: for a delicious meal and two months of lawn mowing that have been a huge help while we haven't been around to take care of our lawn. And for being so supportive.
  • Dana: for being an amazing friend, and for taking care of our home and dogs during surgery, and leaving me such fun surprises all over my house, including the candy, balloons and new jammies!
  • The Bauer Family: to Nick for being an awesome boss and friend. To Susan for taking time to organize meals for us and for making us the delicious white chicken chili we enjoyed so much.
  • The Steiner Family: for some delicious baked potato soup.
  • The Hammer Family: for the tasty pork tenderloin and salad. That blueberry chutney was perfect.
  • The O'Neil Family: for pizza, right when I was craving it.
  • The Spanner Family: for the beautifully marinated rib-eyes, salad, and twice baked potatoes. 
  • The Anderson Family: for the AMAZING chicken noodle soup and homemade bread. How can I bribe you to give me your recipes?
  • To my friends: who came out the night before we went to Seattle to cheer me up. I love you all. 
  • To Andrea: for caring for my dogs during one trip, for being an amazing friend, and for letting me freak out to you. Oh - and for keeping the blog going. I'm so very glad to have you in my life.
  • To Maren and Jason: you're awesome and fun, and I love how you cheer me up.
I love flowers, and in the past week, I have received beautiful bouquets or plants from the following people. My kitchen table looks like a garden and I love it. 
  • My dad sent a very happy yellow bouquet in a white pitcher. 
  • Jeff & Judy Coddington sent a beautiful red and pink arrangement.
  • Kim brought me a beautiful selection from her own garden.
  • the Heaston's sent a very pretty rose bowl.
  • My big sister sent a pretty plant basket with a balloon!
  • My amazing office sent a plant basket and kind card.
  • Aunt Lizzie sent a beautiful peach and purple arrangement in a lovely vase.
  • Deanna and Kara brought a stunning purple arrangement that brightened up my hospital room!
  • and Louise brought me a calla lilly plant, and offered to keep it alive for me this winter (proving how well she knows me).

Finally, my team at work, who have not only been supportive, but also donated time off to help us get through this chunk of downtime.

Saturday, October 6, 2012

A slow road to recovery.

It's been almost two weeks since I used my computer. Andrea has been kind enough to keep the blog going when I couldn't, but I think I can handle it now.

Surgery went as well as it could. Better, in fact. I don't remember anything after the time the epidural was put in, including that oh-so-flattering photo that Andrea posted. So I don't remember seeing my husband as they rolled me to surgery, or talking to the surgeons like I was supposed to before the operation.

I remember waking up in recovery, crying because my throat and shoulder hurt soooo bad, and my hip was cramping. I was on my side, which is how they positioned me for the operation. I'd been that way for so long that my hip was cramping. My throat hurt because they had to use a larger than normal tube, and leave it in longer than anticipated while stabilizing my heart rate/ They also had difficulty removing it.

A few more hours later and I woke up in my room on the 5th floor, where we began what was a 4-day battle to try and find a comfortable way to lay and control the pain. At that time I had three IVs in my two hands. Ow.

I knew chest surgery wouldn't be a breeze. I knew it would hurt. I did not know how bad it was going to hurt. despite heavy amounts of drugs and the epidural, I was suffering big time. I can honestly say that I would rather go through childbirth twice without painkillers, than ever go through this again.

I had a drainage tube in my side, and an incision on my back. The other side was sore from the surgery, and everything about my right side abs hurts, so there was really no chance to get comfortable. So for two days I slept most of the time, heavily drugged, and was comforted by my mom and husband the rest of the time.

I had amazing nurses. amazing. They did everything they could to make me comfortable.

After the two days, it was time to remove the chest tube, and wean off the drugs. So the tube came, out, which made me happier than I can explain. sadly, so did the epidural. Then they took away my magic pain button and tried to transition me to oral pain pills. this did NOT go smoothly and after several hours of agony, the my beautiful, wonderful, sweet nurse turned the magic pain button back on. By this time I was down to one IV.

It took a little more time, but we did transition off the IV meds, and starting planning to go home. On Friday, I got to enjoy my first shower since surgery and it was fantastic, even though I needed helpers to accomplish it, and a nap afterwards to recover from the effort of standing that long.

Friday afternoon we went and stayed the night at Kevin and Xandy's house in Bellevue. They were so very helpful for us during all of this, by watching JT while we attend appointments and opening their home to us. Friday night was extremely rough. We had trouble filling all the prescriptions to control my pain, and the nausea caused by the pain meds, and everything got out of whack, leading to an evening of barfing, which started on the car ride home. yuck.

On Saturday afternoon, we decided to make the drive back to the tri-cities, as my mom was flying out from there on Sunday. She had flown in from Maryland to help take care of me, and her assistance was amazing. She stayed in the hospital with me every night.

The drive was not particularly pleasant, but we made it. I'll post about life at home tomorrow, but for now, know that i'm doing fine and recovering slowly. Thanks for everything!

Thursday, October 4, 2012

First week back home...

As many of you know - Jenna and her family are back home now.

I have had the chance to visit a couple times and have seen a huge difference in her from those two visits.

Initially she was having a lot of trouble keeping food down, controlling the pain with her meds and moving in general - I believe these things are still an issue - but not as much.

She is at least eating and getting up and moving a bit more - but the pain is still pretty intense, but that is to be expected.

Still hoping to get an update on Monday regarding the tumor and what it really is (Spindle Cell vs. Neurofibroma) - keep you fingers crossed it will turn out benign!!! :)

Anyway - for now you will still be getting updates from me as it is painful for Jenna to text and type - so if the text messages you receive from her seem short...it is for good reason.

Jenna and her family greatly appreciate all the love and support they have gotten from friends and family - keep it coming!

Big thanks to everyone helping to provide meals this week as well - it has been a huge help for them!

Talk to you soon -