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. 

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?

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. 

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.) 

Picking Out a Cranial Prosthesis

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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....

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.)

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!