Thursday, January 31, 2013

I Wish I Had Better News Today

This morning I had CT scans of my chest, abdomen and pelvis to see the status of the tumors in my lung, liver, and bones.  I’ve been feeling better the past week and the hope was that the chemotherapies I’ve been getting were shrinking my tumors.  Wynn, Nathan, Nina and I then went to see my local oncologist late in the afternoon to get the results of my scans.  Unfortunately, I did not get good news.  Although the primary tumor in my lung shrank, the lesions in my liver and bones are bigger and more numerous. 

Next Steps:
So the sobering reality is that I need to set myself up for clinical trials, which are therapies that are offered only under strict research protocols. I will start a new chemotherapy next Thursday, which will work to preserve my liver.  In the mean time, I will have another liver biopsy, probably tomorrow, which will be tested for information needed to help my doctors choose the best chemos to try next and help me decide the best clinical trial to choose down the road. 

Given that I am likely going to enter a research protocol at some point, I thought I’d let you know that my family is participating in Cycle for Survival, a fund raiser for Memorial Sloan-Kettering, a nationally known cancer research center.  Along with other family members, Wynn, Nathan, and Nina will be cycling for me at the Equinox Fitness Center in Chicago on February 9th, to raise dollars for researchers who are looking for new therapies for all cancer patients, including me.  

This link will bring you to my family’s page if you’d like to make a donation:

Thank you to all our friends and family members who have been an incredible support system to me, Wynn and Nathan and Nina. We love you all!

Wednesday, January 30, 2013

He Said Just the Right Thing

         This past weekend, one of my oldest and dearest friends came to visit me.  Anita and I met when we were 4 yrs. old at Sunday school.  [Along with our mutual friend, Stacy, we have known each other for 50 years!]  Anita and I talked, laughed and cried.  Oh…and we shopped.  We both like Eileen Fisher so we went to the outlet before she left to drive back to Iowa.  While there I found a pair of boots that I really liked and wanted.  The only problem was, even though we were at the outlet, they were still too expensive for my blood.  Anita did her best to talk me into getting them.  She even told me of a specific outfit I have that would be great with the boots.  But, I just couldn’t do it and I walked out without them.  

         Shortly after saying ‘good-bye’ to Anita and leaving the store, Wynn called me while I was driving home.   Here’s how that conversation went:

Wynn:  “Hi…where are you?”
Me:  “I’m on my way home, grieving over a pair of boots that were too expensive to buy. “
Wynn:  “How much?”
Me:  “$XXX”  (I'm not posting how much 'cause it's embarrassing)
Wynn:  “Oooo.  If you think you’ll wear them a lot, get ‘em.”
Me:  “Well…I would wear them a lot, but really…at this stage in my life…how long will I really wear them?”
Wynn:  “What are you talking about…just get ‘em.”
Me:  “Yeah…but if I was totally well, I wouldn’t spend that much.”
Wynn:  “Just get ‘em, and I’ll bury you in them.”
Me:  “Promise?”
Wynn:  “Promise.”

So, I turned around and bought them.  Aren’t they cute?!  

Tomorrow is my scan...I'll be in touch.

Friday, January 25, 2013

Comment Problem Fixed

Sorry about any difficulties readers have experienced trying to leave a comment on my blog.  I changed some settings so I hope that takes care of the problems.  Please leave your comments...I love hearing from you.

Wednesday, January 23, 2013

Uninteresting Update

Today has been a good one.  The first two days after my second chemo session weren’t bad at all, but days 3-5 were pretty challenging.  The nausea and fatigue were indescribable.  However, today, I feel much better…only mild nausea, minimal fatigue, mild liver discomfort and minor bone pain.  I was hoping that after my second chemo session I would be able to figure out some sort of pattern, but so far, it seems like I need to plan to be out-of-commission for about 5 days afterwards.

It’s my understanding that chemotherapy treatments are cumulative, so I can expect to have a longer recovery with each treatment.  I’ve been told that the post-chemo liver discomfort may be a ‘sign’ that the medications are working on the liver tumors…so I suppose I should be glad :/   

Two good things:  My hair is still on my head and the fuzzy spot in my right eye seems to show up less frequently. 

Next week I’m scheduled for CT scans to see if my chemo treatments are helping.  I probably won’t blog until after that.  Thanks for reading, everyone.

Saturday, January 19, 2013

Down and Ups

Ahhhh, cancer…the gift that keeps on giving. 

A couple of weeks ago I noticed that I had a small area in my right eye that would sometimes get fuzzy.  It comes and goes and initially I thought I had a smudge on my glasses.  After realizing that something was going on with my vision, I mentioned it to my oncologist.  He reminded me that one of the medications I’m on, Avastin, decreases the blood supply to my tumors and one of the side effects is vision changes because Avastin can act on the vessels in my eyes.  He recommended an evaluation with an ophthalmologist, which I did last Tuesday.  I’ve been found to have what are called cotton-wool spots on my retina, which are white puffy areas of inflammation.  Although seen in diabetics and those with uncontrolled high blood pressure, a rarer association is in folks with metastatic cancer.  That would be me.  The ophthalmologist didn’t think it was associated with Avastin because the vessels on and around my retina look healthy and Avastin is used in the eyes of diabetic patients.  So the thought is that if my chemotherapy is working, these cotton-wool spots may arrest or even get better.  However, if the chemotherapy doesn’t work, I may slowly lose my vision.  Nice, huh.  Could I please catch an f-ing break!  It’s taken me a few days to write about this because of all the shitty information I’ve received about my cancer, this one hit me pretty hard.  I have a follow-up appointment with my ophthalmologist and may see a retina specialist sometime soon.

A couple of days after I learned about my eyes, I was told that my liver enzymes had improved – which gave me/us hope that my chemotherapy is working.  If I had to guess, I think the fuzzy spot in my right eye that comes and goes, hasn’t been there as much – another good sign.  Please continue to wish me luck.

The other good thing is that my hair hasn't been falling out yet and I postponed my wig pick-up for another week.  So by my count, one bad, really bad, piece of news about my eyes gets balanced by good news about my liver enzymes and no hair loss yet.  That's one bad to two good.  I win!

[BTW local friends and family:  The ophthalmologist says that my vision hasn’t changed and that it’s safe for me to be driving.]

Thursday, January 17, 2013

Chemo Round Two….Done

Today was another very long day.  Nina and I arrived for my 10:15 AM appointment on time and we walked out of the office at 3:30 PM.  Through my port, the nurse drew blood for a CBC (complete blood count) and other standard tests.  So far, my CBC is staying normal enough to receive the chemotherapies, which I’m so grateful for.  [This morning, the woman sitting in the chair next to me was told that her white blood cell count was too low for her to receive her chemotherapy today.  I watched as she tearfully called for her ride, packed up her things, and went home.  I can imagine how disappointing it would be to be unable to receive the medications that would be helping fight the fight.  I felt for her.]

My time in the chemo chair was a little longer than usual today because my doctor added two anti-nausea medications since the first few days after my first treatment were really rough. I’m hoping they help, but I’m dubious.  (I started feeling nauseous while sitting in the chair today, but I came home and took some oral anti-nausea meds that I hope will help.)  I’m tentatively scheduled for my next treatment in three weeks, but that appointment is dependent upon CT chest, abdomen, and pelvis scan results, which are scheduled in two weeks. 
I got some good news today.  The results of my liver enzyme tests that were drawn last week have improved over test results from prior to my first chemo treatment.  That’s a good sign that the chemotherapy is shrinking the tumors in my liver.  Additionally, overall, my liver hurts less and feels a little less “full”.  This week I really needed a small piece of good news. 

Wynn bought and set up a training apparatus for my road bike.  I rode a little this morning before my treatment and when I came home I rode a little more.  I don’t know if it helps, but I was thinking that if I get my heart rate up a little, I’d be circulating the chemo drugs around that would help metabolize them faster.  I know they’re supposed to be helping me, but I like the idea of getting them through my body as soon as possible. 

Monday, January 14, 2013

Port Details

I’ve had a few family members and friends ask me about my port so I thought I’d explain, in more detail, what it is. 

Mine looks like this:

It’s placed in my chest like this:
The port was surgically implanted just under my skin so that there’s a half-walnut-shell hump and the three small bumps (on the round center of the port) that can be felt on the right side of my chest.  The round part of the port is made of a dense piece of silicone.  From the port there is a tube that runs up toward my collarbone, then turns and enters a vein that goes directly to my heart – the superior vena cava to be specific.

When my care providers need access to my circulatory system (to get a blood sample, give me medications or chemo, etc.), they simply push a specially designed needle, (with tubing), into my skin in the center of the three small bumps.  The needle goes into the silicone and into a small reservoir of my blood. So, for example, when I receive chemo, the medication enters my port, goes directly to my heart, and then is immediately pumped out to all parts of my body.  [Before I got my port, I received medications through an IV in my arm.  The medications had to then travel from my arm to my heart and then all over my body.  With a port, the meds are distributed evenly faster.]

Given that I have to get IV medications and blood drawings so frequently, I am glad to have the port.  However, the port has its downsides, too.  I have two incision scars that I didn’t have before and a weird half-walnut-shell foreign body bump on the right side of my chest.  Although having a needle placed into the port is much better than starting an IV in my arm when measuring the pain, it is certainly not painless.  Wynn suggested that I put a lidocaine (anesthetic) cream 45-60 minutes before anyone accesses my port.  My nurse pal, Debbie, helped me with that and that worked wonderfully.

Any questions?

Saturday, January 12, 2013

Today's Thoughts


My last blog generated a couple interesting replies both on the blog-page and in personal emails I’ve received.  Just to be clear, at this time I’ve decided not to have pan-cancer testing done.  There are a few confusing things about this testing that I didn’t blog about, but the bottom line is that for right now, I’ve decided that I don’t want to know if I have a resistant tumor type.  I understand from replies and emails that a couple of friends would choose a different action…and I am very respectful.  For me…I’ve met with some pretty damn smart and experienced lung cancer specialists who have encouraged me to wait on this testing. Plus, if I have a resistant tumor, for now I like the thought that I’m trying to fight it.  It’s terrifying to me to think what I might do if I learn I have a resistant type…throw in the towel?  I have my second chemo session this coming Thursday, and a couple weeks after that, I will be re-scanned to see if the chemo regiment I’m on is working, or not.  (I’m terrified of that, too.)  Fortunately for those of us with lung cancer, if the first line chemotherapies don’t work, there are other drugs to try. 

I gather that a couple of you are thinking that I need to have conversations about my plans if things don’t go as I hope they will.  Rest assured, Wynn and I have; we are both hopeful realists.  We know there is no cure for me.  For right now, he and I are focusing our hopes and energies on trying to find a treatment that will work for me to get more time together, with Nathan and Nina, our families and friends.  I am very comfortable with this position for now since I was only diagnosed 4 weeks ago.  As I continue on this unexpected journey, that may change.  Wynn and I have talked about the need to continually assess and re-assess. So talk of plans for palliative care, etc. are being deferred until a later time because we are choosing to be hopeful. 

 About the wig:   I re-scheduled my hair buzzing and wig pick-up appointment to next Saturday.  Soon after my head started to tingle, it stopped and it hasn’t progressed to aching yet.  So far, my hair hasn’t starting falling out faster than usual – so I decided to eek out another week with my own hair. 

Tuesday, January 8, 2013

WWYD...What Would You Do?

Among the many tests I have had and that have been suggested or recommended to me is one called a pan-cancer test.  So…going back to the gene mutation testing I had early on, let me explain my understanding of all this.  (Keep in mind I might be full of crap.) 

In the past few years there has been a lot of research and excitement about tumor mutation testing.  A simple explanation:  Tumors have their own genetic information that is different from our other healthy body cells.  Researchers have found that some tumors have gene mutations, (alterations in the normal sequence of DNA), which make the cells cancerous.  Researchers now know how some gene mutation(s) change a normal cell into a cancerous one…one that grows and divides too fast, doesn’t function as a normal cell, and/or that doesn’t die away properly when it gets too old to function properly.  Researchers have also found what are called “targeted therapies”, which are medications (not chemotherapies) that go right to the tumor mutation and essentially correct the mutation allowing the tumor cell to “act” more like a normal cell should. 

These targeted therapies are pretty cool.  They are one-a-day pills – and for example in my case, if I had had the EGFR mutation that I wanted so badly, the targeted therapy would have helped shrink my lung tumor and the metastatic disease to my liver and bones.  Sounds almost too good to be true, right?  Well…you’re correct.  I understand that targeted therapies, like chemotherapies, don’t work forever.  Much like bacteria that mutate in the face of antibiotics so that the antibiotic is no longer effective, cancer cells change their genetics so the targeted therapy, (or chemo), will no longer retard the growth of the cancer.  Targeted therapies can work for as little as a few months, or their effectiveness can be measured in years.  I don’t think anyone knows yet why some people can benefit from a targeted therapy for many years and others for a much shorter time. 

So far, I’ve had tumor mutation analysis for the most common mutations associated with adenocarcinoma of the lung, but there are a few labs out there that will test my tumor for all known gene mutations by using a newer technology called Next-generation sequencing.  These labs can test for ~280 different mutations, for ~$5,800-6,000 and results take ~3-4 weeks. (Insurance coverage for this testing is “iffy” at best.) The results will tell me about any mutations they find in my tumor, what therapies are available (both FDA approved and not yet FDA approved) and about any therapies that are only available through a clinical trial.  The other piece of information I would learn is if I have a mutation that is resistant to therapy.

So here’s my dilemma:  Do I want to know if I have a tumor-type that doesn’t respond to currently available therapies?  I suppose some folks would want to know that information and then opt for only palliative care – and maybe even skip the chemotherapy.  So far, my team of doctors has advised me to wait on this testing.  One doctor said that I should save any tumor tissue in case I need it in the future for a clinical trial.  The other doctor said to wait because in the oncologist’s community, this testing is controversial since a clear treatment may not be known for many of the mutations that may be found. 

For now…the decision to have this testing is ‘on hold’.  So…WWYD?
(No response is being requested here…it’s just food for thought.  And remember...I might be full of crap.) 

Sunday, January 6, 2013

Picking Out a Cranial Prosthesis


It turns out that the insurance lingo for a wig is a cranial prosthesis.  Prior to submitting an insurance claim for a wig, I need to get a prescription from my oncologist for a “Cranial prosthesis due to chemotherapy induced alopecia.”  In other words, a wig because one goes bald from the chemotherapy. 

Brigid and I went to LuLu’s Wiggin’ Out to look for a wig last week.  The name of the shop gave me pause…”LuLu’s”…that’s not far from my name, since some people call me “Lu.”  I was hoping that would be a good sign. But the “wiggin’ out” part is what I should have paid more attention to. It’s a small shop in a far suburb that was a hybrid wig shop/costume shop.  The styling chair was spray painted hot pink and sat in the middle of the shop in front of a hot pink wicker mirror.  They have very nice, quality-looking wigs, but also have the rainbow colored clown wig and Orphan Annie wig.  The young woman who helped me was great…conservatively and neatly dressed.  She introduced me to the young woman in the shop who cuts and styles the wigs.  This woman was pierced and tattooed. I really hate to stereotype folks, but I had a hard time picturing her cutting my wig into anything but a Mohawk or with severe spikes.  So…I walked out without placing an order.

Next stop, Jerome Krause, a so-called “high-end wig shop” in a north shore suburb, with Brigid and my mom.  Walking in, it looked like a doctor’s office.  There were separate styling rooms that were neutrally decorated.  The staff was neatly and professionally dressed…and kind of looked like me. Their inventory was huge, so that I could pick out one on the spot, rather than having to order one in the color of my choice.  The cost of the wigs were ~$20-25 more, but this place will custom fit the wig to my head.  The way it works is that I put a deposit down on a wig, which they hold for me.  Then when my hair starts to fall out, I go back, they cut my hair close to my head, and fit the wig to my hairless head. 

I wondered why hair falls out with chemo.  I now understand that chemotherapeutic agents slow or stop the growth of rapidly growing cells, i.e. cancer cells.  Unfortunately, the agents don’t distinguish between “good” cells and “bad” cells.  Since hair bulb cells grow and divide quickly, they are particularly vulnerable.  What I didn’t think about is hair on other parts of my body besides what’s on my head….eye brows, lashes, the fine hairs on my arms, etc.  I understand that some people find that their clothes feel funny on them after they lose their body hair.  

I’ve been told different things about when I should expect my hair to start falling out….7-10 days after chemo….2-3 weeks after chemo…I’ve even learned that a very small percent of chemotherapy patients don’t lose their hair.  I looked up that number and it’s 1%.  I have been told that my “hair will hurt” several days before it actually starts falling out. More specifically, the roots will tingle at first and then may ache.   My scalp started to tingle a day or two ago. 

I pick up my wig this coming Saturday.  Stay tuned for pictures....

Friday, January 4, 2013

Wishing Everyone a Happy and Healthy New Year

Ringing in this New Year has a much different meaning for me.  In the past, although I did wish for Good Health and Happiness for everyone I know, this year I REALLY DO wish for Good Health and Happiness for everyone. Period.  People I know, those that I don’t…everyone.

Over the past three weeks, I’ve learned so much about a subject that was barely on my radar.  One common question that keeps getting asked is, “How can you be so advanced and not known it.”  The textbook answer is:  Lung cancer, like a few others, tends not to have very many associated symptoms. Therefore, about 40% of patients are already at stage 4 (spread to other organs) at the time of diagnosis.  In my experience, my 3 cm lung tumor isn’t giving me much trouble.  Most of my discomfort is from the mets to my liver and bones.  

My answer to the above question is:  I don’t know.  I have been in excellent general health my whole life.  Any aches or pains I had I attributed to the active lifestyle Wynn and I have always maintained.  In looking back the only thing Wynn recalls has to do with our love for road biking.  Whether out on a ride with just Wynn, with our biking buddies, Ann and Mike, or in a small group – it was always my nature to stay at or near the front.  I liked leading or chasing the leader. This past summer Wynn recalls that I was often lagging back or bringing up the rear.  I noticed it too, but blew it off to arthritic joints and age. 

I don’t know the exact message I’m trying to send, other than I’ve been happy to live my life, (some of it in the dark, obviously), doing things I love to do with people I love.  Do I wish I was diagnosed sooner so that I’d have a better fighting chance?  …ABSOLUTELY!  But I also feel very “japanesey” about it all – I didn’t ignore signs.  And now that I know, I plan to do my best to get back to the excellent health I’ve enjoyed my whole life. 

(I was going to blog about getting a wig, etc.  Maybe tomorrow.)

Tuesday, January 1, 2013

First Chemo Session...Done

Here I am, ~4 days after my first chemo therapy session.  I still have hair and a smile :)  Yesterday I was back in the hospital to have a port placed, which is a small device implanted in my chest.  The port gives my care takers an easier access for IVs, chemo therapy, blood draws, etc., meaning no more IV starts in my arms.  Hopefully this means less painful sticks and things will go faster.

The port placement went well.  I was pretty well snowed and don't remember much.  The nausea from the anesthesia wasn't fun, but none of this is.  I am just grateful to have these medical advances around to help my life be, even a little, easier. 

It's really frigid here in Chicago today, but Wynn and I went for a short walk.  The cold, crisp air felt really good.  I love my husband.

I've been getting tons of notes, messages, emails, and calls.  I need everyone to know how much I appreciate hearing from all of you.  I read every message and hold them close to my heart.  Thank you so much for your love and support!