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

Advice for Your First Mammogram

Correction: my mom did not write this, but she thought it was good advice from whoever wrote it.: 

Many women are afraid of their first mammogram, but there is no need to worry. By taking a few minutes each day for a week preceding the exam and doing the following practice exercises, you will be totally prepared for the test. Best of all, you can do these simple practice exercises right in your home.

Exercise 1: Open your refrigerator door and insert one breast between the door and the main box. Have one of your strongest friends slam the door shut as hard as possible and lean on the door for good measure. Hold that position for five seconds. Repeat again in case the first time wasn't effective enough.

Exercise 2: Visit your garage at 3 a.m. when the temperature of the cement floor is just perfect. Take off all your clothes and lie comfortably on the floor with one breast wedged under the rear tire of the car. Ask a friend to slowly back the car up until your breast is sufficiently flattened and chilled. Turn over and repeat for the other breast.

Exercise 3: Freeze two metal bookends overnight. Strip to the waist. Invite a stranger into the room. Have the stranger press the bookends against either side of one of your breasts and smash the bookends together as hard as she can. Repeat for the other breast. Set an appointment with the stranger to meet next year to do it again.

A Picture!

My mom asked me to post this today, sense of humor is back :)

Surgery #2

It is 6:30pm, and my parents just got back from hospital.  It was a very long day, but the surgery went really well. They first had to go down to Nuclear Medicine (that just doesn't sound good does it?) where they injected some dye into her lymph nodes. Then after lots of waiting they went in and removed four nodes. They did not see any cancer and everything looked clean, pretty much what they expected, but still good news. The final pathology report won’t be back for a couple of days, but the early report is very encouraging. 

I had some more funny items in this post, but they got edited out. Mom was pretty tired and still drugged from the anesthesia but I'm hoping she'll have more of a sense of humor when she comes out of it. 

More from My Mom

Okay after a bit of an intervention tonight, I’ve decided to participate in my own blog not because I am egomaniacal (well I actually am), but because I have felt badly that I haven’t been able to respond to everyone’s kind wishes and questions.

 
It is after midnight, but I figure I will be sleeping through most of tomorrow so no need to hurry to bed right?  Jen has certainly told you more than enough.  I don’t have much time to write more because it is a full time job monitoring any new emerging symptoms.  I thought you might like to know, however that my bp is 140 over 90, I have an emerging zit on my chin, halitosis, and a hang nail on my big toe (my real big toe that is).
 

Seriously, I can’t tell you how wonderful it is to know of all your love and support.  Thank you!  Occasionally there are moments where I search for my “happy place” and you are all there with me!  And…if any of you ever have to go through even a fraction of this, I hope you will have a daughter and spouse as wonderful as mine who know just when to make jokes and when to distract and when to dispense sleeping medication, two teenage boys who endure the frequent use of the word ‘breast’ and give you hugs when you are sobbing, a missionary who knows just the right things to say, and two affectionate cheer pixies as cute as ours.  Oh and a mother and father who have already brought me 4 meals!!! And family and friends as kind as you have all been.

-Lisa

The Beginning

Hello friends and family - if you are reading this we assume you are doing so because you want information about what's going on with my mom at the current time. She was hesitant to do this, I think if she had it her way she could take a long vacation and come back cured without anyone knowing a thing. But we (mostly my dad and I) didn't think that was the best option. We really appreciate everyone's support and feel bad that we haven't been able to get information out to concerned loved ones fast enough and this is our remedy. We will do our best to keep it updated with the latest information but hope that none of you will feel any pressure to read it. (This post is rather long as I try to outline everything that's happened, but subsequent posts should be much shorter).

Comments on the blog are appreciated, as are emails to my parents, but they feel like they won't be able to respond as quickly as they would like. If you have questions or want to sign up to bring meals feel free to email me (jenniferandwest@gmail.com ) and I will be able to respond faster. I'll be putting together a schedule for breakfast, lunch, light afternoon snack, and dinner every day - our goal is that we won't have to grocery shop until the surgeries are over! Lucy is also concerned that no one will be around to take care of her, so I'll be putting together a Rent-My-Sister schedule as well - although we probably will need to have her around at least once a week.

We debated titling this blog 'HyperVigilance' as it is an apt description of what brought the current situation to light. My mom has always been uniquely aware of her own physical well-being and it turned out to be a huge blessing. Here's a general timeline of her health over the last year, along with updates and some humorous anecdotes.

Brain -  She was diagnosed with a meningioma (benign brain tumor). These are pretty common and the doctors aren't too worried about it. But, they recommend that she gets it removed while she's young. She was always telling us she had a brain tumor but we all just thought she was getting old...apparently it was both! She likes to tell us these are very common and that half of all adult cats have them - whew! As long as cats are used to it.

They also discovered that she has a chiari malformation (opening from her skull to her spine is too small).  In her case, it is causing a syrinx (kind of a fluid filled cyst) in her spine.  Though she doesn’t have many symptoms, it is thought that she ought to have it corrected before she begins to have symptoms.When your mom tells you her brain is being squished and that brain juices are leaking into her spine it's a little traumatic - but she likes a reaction and my dad quickly explained the facts of the situation.

The Other - She had a mammogram in December that showed some calcifications in one big toe (our code word for 'breast' - helps keep the teenage boys, and well, all of us more comfortable with discussing it).  While calcifications are a common finding in women in their 40s, there was a cluster of calcifications that needed some closer attention.  She had a biopsy performed where they found something called DCIS or Ductal Carcinoma In Situ.    DCIS is actually pretty common, but it does need to be treated because they have no way of knowing whether or not it is going to invade.  So she had a small lumpectomy performed where they took out all of the calcifications and a little extra, hoping to get clean borders.  Unfortunately, there was one edge that still had some DCIS and they found a very small (4mm) tumor of invasive cancer which they were able to remove with completely clean borders.  This was small enough that not only did it not show up on any of the many mammograms but it was not felt by any of the many (she likes to emphasize the word 'many') doctors who examined her.  The doctors are very confident that because this was caught so early it is very treatable. She will be having a surgery tomorrow (March 2nd) to do a lymph node biopsy in order to make sure nothing has spread to her lymph nodes. She says since being diagnosed she has become aware of so many living breathing happy women who have lived through it and so she is confident she will be fine.

She has another surgery scheduled in two weeks (March 16th) where she will be having more of the DCIS removed. They don't know exactly what this surgery will entail as they are waiting on the information from tomorrow's surgery. In other news - she got some test results back today: the cancer is HER2 Receptor negative (means this is not the most aggressive form of cancer), it is estrogen/progesterone sensitive (means there are more drugs that can be used effectively), and the genetic test came back negative (means I am not doomed to have everything cut off and/or removed). 

My mom told me about the cancer on Valentine's Day. We had planned to go for sushi but there was an hour wait, so we ended up at a random Mexican restaurant with a mix of early bird special types and Chuck-a-Rama patrons. We ate our mediocre meal, she told me the news, and then told me what I thought was the worst news of the night....I will probably have to get a mammogram at age 32 rather than 40! 

A week later, after the lumpectomy, I was at home with my parents asking about the surgery and getting an update on the next steps. My dad was taking the lead on explaining and he insisted on using lots of hand gestures and pointing to areas of his own chest to help explain...I'm not sure there's worse way to hear about cancer procedures but I know that I will probably never be able to get that image out of my mind. 

My mom wrote a letter to William on his mission and in that she included what she called her 'State of the Family' address. I thought it would be appropriate to include some of that here. We've been surprised at how positive this experience has been for us in our own family and her letter really captures some of that:

I like who we are!  I like where we’ve come from  - thinking about the larger extended family – grandparents, aunts, uncles , cousins etc.  It was so fun for me to gather up pictures of everyone to send to you.  It reminded me of how lucky we are.  And I like thinking ahead about the future.  I think each of my children is wonderful and that they all have bright futures ahead of them.  Jennifer is happy and enjoying work so much and doing an incredible job there.   She’s persevered through college and is just about to check that off (not as soon as everyone hoped).  She visits often and the other kids appreciate and enjoy her.  We couldn’t be prouder of you. We know what you are doing is hard and yet we can see how happy you are and what an incredible difference you are making in people’s lives.  And all along the way you have been so good at communicating and sharing the experience with us.  Peter is living life to the fullest as a senior with all of its stresses and adventures and girls.  He is looking towards a bright future with many opportunities in college and in serving a mission.  He is being a great older brother.  David is in the thick of being a 14 year old with all of the awkwardness and pressures that brings and yet he is still just a sweet pleasant kid at his core.  He takes good care of the little ones and is a good loyal friend to Billy and good company for his parents too.  George and Lucy are so pleasant and enjoyable and happy.   Dad and I feel as close as we ever have and we’re both striving to serve well in our callings and as parents.There is love at home.  Okay, there is a little contention too, but when it comes down to it we’re all there for each other and we can look past the tense times.  We have a nice home.  It is falling apart in places (lost some more siding in a wind storm) and not very clean or organized in some corners (not my strength!), but we fit well in it and it is comfortable and it works well when we want to entertain groups or when we are just hanging out.  We live in a wonderful neighborhood with kind loving people and a beautiful setting that never ceases to inspire us.  So I feel to report that I am so grateful and happy about our good family state!

Anyway, that's the latest update, I will post an update tomorrow about the surgery. Thanks again for all the support, we are so grateful for it and so impressed by the incredible people in our lives.