The Final Post

Here’s hoping this can be the last and final entry for the medical basket case, but given my tendency towards hyper vigilance (the new and improved term for hypochondria) I have to admit it is highly doubtful that this will be my last entry.  After all, there are still hundreds of viruses and diseases out there just waiting to land me and there are still hundreds of symptoms that I have yet to experience! I think I feel something new right this minute in fact, in my left little pinky toe…
 
Cancer:  finally accepting that I am a breast cancer survivor – I no longer cringe when I see the pink ribbon symbol.  Yeah it kind of makes me feel old and vulnerable but at the same time I feel wiser and more confident.  I made it through kind of a hard thing!  I also joined the ranks of a very impressive force of women.  I’m grateful  it wasn’t worse (no chemo) and grateful to be on this side of it.  I will continue mammogram screenings and taking Tamoxifen (estrogen blocker) for five years.  

Just want to give a shout out for mammograms.  After my mammogram and subsequent biopsy I had no less than 22 people check out my breast.  Of those 22 people, I repeat 22 people *@%*!, six of them were furtively searching for a tumor – knowing that the biopsy had tested positive for DCIS (early stage or pre-cancerous stuff). Not one of them found the 3-4mm invasive tumor that was there.  These are people who know what they are looking for and are experienced in finding it.  By the time you can actually feel a lump it will most likely be large enough to require chemotherapy.

Brain:  Trying to figure out what to do about my two brain problems has been a bit of a Rollercoaster ride.  We definitely learned that medicine is not an exact science.  Many people have asked what led me to have an MRI in the first place. I had a number of symptoms such as muscle weakness in my hands, twitching, muscle abduction, and a whole list of “hyper vigilant” things.  The first doctor that I saw was able to sort out the concerning symptoms from the hyper vigilant ones and suggested that I have an MRI in order to rule out MS. 

 Many various doctor’s visits later I found I had a collection of conflicting opinions ranging from “you are at risk of sudden death” to “watchful waiting”.  I had one doctor tell me my brain tumor was near my motor strip and he had me scheduled to have it removed last August just one month after he had me scheduled to fix the other brain problem.  Then his brother, also a neurosurgeon told me the tumor was nowhere near the motor strip. 

 Some doctor’s said symptoms could increase suddenly and be irreversible; others said they would progress slowly.  I think if it were any part of me other than my brain I might not have hyperventilated after each new visit and its curious contradictory findings.

Finally, in exasperation, I decided to seek an opinion outside of Salt Lake at the Mayo Clinic.  According to their website they see thousands of patients per year who have my condition - far more than any Salt Lake surgeons.  With Will’s abundance of reward points for airfare and hotels and my fabulous family’s willingness to cover child care, the trip came together pretty well.  And, it was a great opportunity to have a romantic getaway in the lovely Rochester, Minnesota area where the news broadcasts freezing temperature warnings on September 13th as if this is perfectly normal.

Some of my kids (not to be mentioned) have suggested that I have been shopping for what I want to hear.  This may be true, but who can argue with the Mayo Clinic right?
Things we liked about the Mayo Clinic:

1. Hopsital Gowns!  Did it really take the Mayo Clinic to come up with a gown that covers your backside?  Their gowns have three armholes and wrap one and a half times around you and so you can do a 360 and not flash anyone.
2. Live music!  There is a grand piano in the main lobby and they have people performing there regularly on the piano as well as vocals, violins and guitars.  They also have original art and sculpture throughout the buildings.
3. Bathrooms.  Like everything else at the clinic everything is top notch and well thought out.  (See the photo demonstrating the ample supply of wheelchairs for example.)  The bathrooms had automatic everything, but the water flow is actually strong enough to clean the soap off your hands and the auto towel dispenser actually dispenses a towel that is long enough to dry you off and sometimes it was even two-ply.  Also, the drinking fountains all have cups next to them so you don’t have to bend over and leave with water dripping off your cheeks and chin.
4. Hospital Store. A hypochondriac’s dream. They have everything from fancy band aids to various yoga dvds and books on alternative medicine.  I found this surprising given that earlier I was practically escorted from the building when I mentioned the word “chiropractor”.  I actually received the same response from 2 different doctors and one said “You should see what some of these quacks have done! ”… but then he admitted that they only see the cases where things have gone wrong.  I emerged from the store with a Mayo Clinic cookbook and an anti-nausea device.  Will left with a giant syringe to irrigate his ears and a fancy anti-skin cancer hat to bring to Lake Powell – it even has a lifetime warranty – not against cancer, but against wear and tear and loss.
5. People.  All of the people  from the cafeteria workers to the receptionists to the doctors were so courteous and professional.  I especially liked Dr. LaChance.  I joked that he was my ‘last chance’ as his name indicated.  My last chance to get out of two brain surgeries.
6. The last thing that I liked about the Mayo Clinic is that they told me what I wanted to hear.  They reassured me about some of the conflicting information that I had collected.  They did not feel like the tumor was currently growing and did not think that it necessarily needs to come out some time in my life as most of the other doctors suggested.  They feel like it is perfectly reasonable to continue to watch it carefully and forgo any near term plan for surgery for the tumor.  They were much more concerned about the Chiari and syrinx.  They said it was not unreasonable to perform surgery to correct this as the syrinx can be serious and is at the C2 level.  The nerves that tell all of your major organs what to do pass right around the syrinx and it is causing my spinal column to bulge.  However, they also said it was not unreasonable to just watch this carefully.  In the absence of progressing symptoms which would most likely only come on due to some kind of blunt trauma, surgery might not ever be necessary.

So my plan is to forego both brain surgeries and avoid situations that might cause blunt trauma.  These might include yardwork, housecleaning, taking out the garbage and packing the kids lunches for school. I would also include potty training, but gratefully, I’m retired from that.  If I appear spacey or unintelligent, remember it has nothing to do with my age or being a busy mother, but blame that and all of my other faults and defects on my brain tumor and bulging spinal chord.

Happily, I’m signing off on this blog.  Thank you all for your concern and thoughtfulness.
Lisa

Progress Report

Hey!  Its time for a progress report!  I think my sense of humor is coming back, but I’m trying to keep it at bay for a bit because it hurts to laugh.  I’m perfecting the internal laugh where you just hold your abdomen still and let your throat laugh.  It is so good to be on this side of it!  I always tell my kids before they have to have an immunization or a throat culture that the anxiety and fear are often the worst part and it was no different here. (gulp) There is such an incredible support network in the community for Breast cancer and so many incredible strong survivors out there that you just feel lifted up through each step. 

I’m amazed at what the human body can go through and how it heals itself.  I feel like I went through something truly barbaric and yet I moved from being so exhausted that I could barely talk to getting out to do a round on the hospital floor with my walker, to showering by myself, to conquering the stairs at home to putting on real clothes and full hair and makeup yesterday… only to find myself getting it all wiped off with a cold rag while laying on the floor of the doctors office after passing out at yesterday’s post op visit.  I think it was the culmination of all of the weeks of what I call “the creeps”.  I get light headed just entering the hospital to visit someone else.  I’ve kept a stiff upper lift through all the needles, MRIs and other unmentionables and I think this was just the straw that broke the camel’s back.  Well, it was probably 2 parts pain (surgical drains removed) uh 3 or 4 parts pain, and 6 parts “the creeps” won’t elaborate. (surgical drains, good look at Frankenstein). 

I’m not going to lie; there have been some incredibly difficult moments.  I have learned a lot of things.  I wish there were an instruction manual for what I’m supposed to learn from all of this so that I could master it now and skip to end of it and avoid any future creeps.

I think things will continue to improve daily and can only go up from here.  I’m continuing to meet with more doctors before proceeding on to any of the brain issues. (more creeps – don’t think about having your head drilled open).  Will give myself several months to fully recuperate before jumping into any more potential fainting experiences. 

Thank you to everyone for all of the exceptional food, treats, notes, flowers, prayers, etc. etc. I wish you could see the looks on my kids faces each time the doorbell rings or each time they taste yet another gourmet meal or sweet treat.  I hope when I’m able to play mom again that I can match this level of excellence, but if not I know I have a few months yet to just blame it on that brain tumor.  But I can’t wait until after that as I have certainly learned a lot about what it means to be thoughtful caring and truly of service.

Recovery Process

My mom came home from the hospital yesterday, she's doing well but very tired. My mom and I like to get a good ten hours of sleep every night.  As anyone who has been there knows, in the hospital she was woken up at least every hour by nurses and doctors checking on her progress. It will be very nice for her to be at home in her own bed, with no one but my dad, Peter, David, George, Lucy and I to bother her :) 

Lucky for her the rest of us were at church for a few hours and we all LOVE to take Sunday naps so the house will be pretty quiet. Although....I thought someone needed to sacrifice some of their time during church to make sure she had everything she needed to be comfortable. Since I've been gone all week I stepped up and slept in so I could be near her. It's the least I could do.

We got the pathology report back early yesterday morning and it all looked good. They found more DCIS (stage zero cancer) but didn't find any more invasive cancer. There are still some factors working against her (like her "youth") but it appears unlikely that she will have to do the kind of chemotherapy that will make her hair fall out. No need to find an adequate eye brow replacement. Hooray!

She won't be able to drive for a few weeks, oh shoot, no carpools for her to drive or errands to run. She's got about a thousand pills to take, my dad is attempting to keep a log of when she takes what since we can't really count on either of them to remember on their own. My mom did say that the nurses were asking her how her pain was and if she had any other discomfort, they had pills for just about everything. But when my mom said she just had the creeps from all the tubes and poking and prodding, and asked if they had anything for that, they came up empty. 

Here's the funny part, she'll be using a walker to get around for a little while. Good practice for when she is 95 ... which we are absolutely counting on her reaching. George was imitating her walking around all hunched over, I took a picture but am not allowed to post it. Enjoy the mental picture.

Overall she's doing remarkably well for just having an 8 hour surgery. It sounded pretty unpleasant. I couldn't believe she had to have other people give her a shower. There are just so many little parts of this that sound unbearable just by themselves, but she continues to take
everything pretty much in stride. She's a great exmple of how to deal with hard, humbling, and just uncomfortable stuff, something that I am terrible at.

I want to say thanks again to everyone for all the help. I was worried how things would go while I was out of town but I didn't have to worry at all. Meals were covered and George and Lucy were always taken care of. My dad could be at the hospital without stressing about home and I didn't feel like I had to call everyone every hour. So thanks everyone for all the help.  

My mom won't be getting out of the house for weeks, but hopefully she will be up for posting at some point in that time.  I'm sure she'll have some good stories from the hospital stay...well, maybe 'good' isn't the right word. For now she's just trying to get her strength back. She's not quite up to having visitors but appreciates all the prayers and support.  

Successful Surgery

The surgery went really well. She called me this morning, right before they were going to take her in, and was telling me I had to correct her blood pressure in an earlier post because the numbers she gave made it sound like she as up tight, so her actual blood pressure is typically 110/60 - she's very calm. My dad says she was cracking jokes and making the doctors laugh all the way into the OR - seems to be handling it all well.

It was long, she went into the OR at 8am and got out around 4pm but it seems to have gone well. They'll get the pathology report on the removed tissue Friday or Monday, this will help them know if/what type of chemotherapy she'll need. Right now the ICU is full so they're keeping her in recovery until there is a space for her. She'll be in the ICU for 24 hours so they can make sure the tissue is getting adequate blood flow, for now it looks good. I'm not going to say anything funny about her or various body parts, partly because I don't want to be in trouble when she wakes up (probably not in the best mood), but mostly because I can't really think of anything funny to say. We're just grateful this part is over and hopeful that things continue to look good for the next 24 hours.

However, I am allowed to make comments about my dad since he is fully able to defend himself. He can't sleep in the ICU with my mom tonight but I think that will turn out to be a good thing. My mom can sleep through his snoring but I'm not sure all the other patients could!

Surgery Day: Multiple Choices

Since Jenn will be on a business trip, I told Will that he would need to update the blog on surgery day and then I proceeded to boss him about what to say to which he responded, “Why don’t YOU just write it.”  So I thought I would make it easy and set things up for him.  Check back later for his selection among the following multiple choice answers.

Tuesday – day before
Lisa:

1. Packs her bag for the hospital, oops takes out the swim suit – this isn’t a vacation – adds reading glasses as the last few months have taken a toll on her eyes.
2. Disappears mid day and we are still looking for her.
3. Interviews prospective anesthesiologists and gives them each a personal health questionnaire.
4. Spends entire day at Costco stocking up.
5. Gets a pedicure.

Surgery Day -am
Lisa:

1. Rushes out the door and grabs her ID and oops Costco card instead of insurance card – Freudian slip – volume discounts?
2. Jumps off the gurney and is last seen chasing the shuttle bus, gown flapping.
3. Passes brain surgeon on the way into surgery, high fives him and says, “See you in 6 weeks, Doc.”
4. Having second thoughts, she uses a sharpie to write, “other breast” on both sides.

Surgery Day – pm
Lisa:

1. Doesn’t notice that Will sneaks over to Costco during surgery for free samples.
2. Has a blood transfusion and feels perky on the happy donor blood.
3. Has a heart attack – defibrillators work like shock therapy and her depression is cured.
4. Emerges from surgery and is happy to find she is five pounds lighter, well, three, maybe three pounds. 

Day after surgery
Lisa:

1. Is enjoying heated hospital blankets, being waited upon, and watching daytime television for the first time in her life.  Requests Bon Bons and peeled grapes from room service.
2. Is suffering from the effects of too many surgeries/too much anesthesia and has no short term memory – has no idea where she is or what happened – blissfully.
3. Commandeers a vacant wheelchair and goes for a joy ride.
4. Has a great view of Costco and charts peak periods, wonders what’s on sample.
5. Tires of daytime television and decides to use the time wisely by trying to learn Spanish from channel 39.  (Hey, this is not a bad idea!)
6. Caught stashing warm hospital blankets and fuzzy blue hospital socks in her take home bag. At first disappointed, then realizes she'll have many more opportunities.

Thank You!

Tonight our Ward got together to start a Ward fast. For those of you not familiar, fasting for us is "to go without food and drink voluntarily for a certain period of time. Fasting combined with sincere prayer can strengthen us spiritually, bring us closer to God, and help us prepare ourselves and others to receive His blessings." (This from the Church website). I never cared for this particular practice much, I love food and I typically just find myself getting really grumpy when I don't eat. Plus, I have to get on a plane tomorrow for a long time and the thought of not eating while traveling was not exciting.

But I was so glad I went tonight, it was incredible to see how many people came just to show their support for our family, and how many people are going to go without food until tomorrow night for us!  I know how hard it is for me and how much I complain about it, but several kids George's age (first and second graders) said they were going to try to fast for us tomorrow. I guess the 22 year-old doesn't get to complain about that anymore.

I just wanted to say again, before these posts started getting all medical, that we so appreciate all the support and love that everyone has shown us. We've been overwhelmed with the offers of help and to see all those people tonight was incredible. Someone made the comment that there were more people there tonight than come on Sunday, which apparently means my mom can draw a bigger crowd than my dad! It's been a really powerful thing for us, me especially, to see how many people are really there for us. So thank you! And we look forward to using all of you over the next few weeks :)

I'm running out of new titles for these posts....Update?

From my mom (after no less than three drafts...I've never been part of a blog that was so much work!) with some commentary by me:

We received the final pathology report on the lymph node biopsy and it confirmed no cancer there.  So this was very happy news.  I believe this indicates no need for the hair falling out type of chemotherapy. (We're all grateful for this, we have been trying to come up with a solution to the lack of eyebrow problem for weeks and all we came up with was for her to wear lots of really low hats).  I am recovering from surgery #2 pretty well. (Actually I think it should be called surgery #3 because the initial biopsy (not performed under general anesthesia was no party…))  I have to admit I felt pretty blue for a couple of days after this last surgery –I  hear this is a side effect of general anesthesia and I’m sure it is often exacerbated when the patient knows she has to turn around and do it again at least 4 more times this year at even higher doses.  

I had an epiphany Friday and I’ve decided that the perfect word to sum up what I have been through and what I have ahead is – indignity.  I feel so much better just having a name for it.  I’ll spare you all the details except to say:  needles (not in my arm –think along the lines of bamboo shoots), photos, and the hands-on opinion of countless medical strangers.

So I have been spending my last few months interviewing various neural surgeons, general surgeons, reconstructive surgeons and so forth.  I have checked references and done my homework on these people.  After careful consideration I chose a surgeon and scheduled my second surgery for last Wednesday.  Then I checked into the hospital and with basically no warning and no opportunity for homework, I signed my life away to some randomly assigned, but exceedingly important anesthesiologist that I had never even seen or heard of before.  On this occasion he was wearing some kind of gauze patch on his arm as if he is himself a patient undergoing chemotherapy.  I found myself thinking, “How is he doing?  Is he feeling okay at this moment, and what about in 20 minutes when I am at his mercy?”  Then he asks me the same question twice – “Does he realize it? Should I test him by giving a different answer?”  He proceeds to outline all of the chilling risks I’m taking in allowing him to knock me out.  I can feel my blood pressure rising and just as he is about to push the button (or whatever it is they do), he tells me I’m about to get the same stuff that killed Michael Jackson.  I open my mouth to request some anti-anxiety meds but that is the last thing I remember.  Who will I get next time?  Luck of the draw and somehow I’m not feeling particularly lucky these days…. 

I do not mean to disparage anesthesiologists, “the unsung heroes”.  I’m just commenting on one more way in which I am being forced to give up control.  I think that must be one of the many things I’m supposed to learn here: how to completely lose control of my circumstances and just go with it.  I think I can do it, but I’m going to need help…and possibly some medication…got to get some pep back!

As an antidote to stress I am working on the following books:

• Surgery Patient 101
• Extreme Measures for Getting Attention
• The New Frequent Hospital Stay Rewards Program: Earn a free mammogram or colonoscopy!
• How to Find Your Own Brain Tumor in Three Easy Steps
• You Too Can Up the Insurance Rates for Your Company of 400 Employees in Just 5 Surgeries, or How to Really Tick Off Your Insurance Company In 6 Months or Less.

I can just picture the insurance company coming to Control4 next year and telling them they seriously need to get rid of whatever employee is claiming Lisa West.    
My next surgery (part D of problem #1 - see first post below) is scheduled for March 16th. At this time they will be removing the rest of the cancer and reconstructing any cosmetic damage.   I need to hone in on the details a bit more, but at this point I know I will be staying in the hospital for 3-5 days and that I will be pretty under the weather for a couple of weeks following the surgery.  I know I will need a lot of help with things during that time.  It is such a comfort knowing we are surrounded by people who love us and are there to help when we need it.  Thank you for all the prayers, fasting and positive thoughts.  It is a hard time, but I definitely feel strengthened.

Lisa