Results: The Disappointment that Waits from Being Overly Optimistic

Last week, I had my post-radiation, post-scan doctor’s appointment to find out if radiation worked. I had also been experiencing some new symptoms in my spine and sacrum, so these were also being examined.

I was feeling, at least in regards to the brain radiation, pretty optimistic. I figured that the radiation would work with little trouble, as that has been the pattern for radiation and me.

Instead, we found that as fast as the radiation was working (killing tumors) it was also growing more (tumors) so much so, that the brain scan pretty much looked the same.

In addition, there is more tumor activity in the lungs (accompanied by a dry, loud, persistent cough which everyone kept tell me was “allergies”.  Apparently not. There are more, active tumors in my spine and sacrum, which have become excruciatingly painful. It has become very difficult to walk and sit in particular positions. If you’ve ever had bone pain, you know how ugly it is.

I was told the next step was chemotherapy (again) to which I said, “no”. I’m done with chemotherapy, which will hold off the inevitable for a mere three to four months while making me feel subhuman.

So, I signed up for home hospice yesterday. I met with a very nice Austrian lady named Esther who got me some very lovely meds that made my pain disappear and made me into a much more pleasant person.

It took me a day or two to come to terms with it – I was sad and confused and afraid and angry, and wondering how in the world this happened, and how did it happen so fast? I’m coming around, though, and hope to be able to spend good time with family and friends.

Until “D-day” I hope to keep up my blog. I’d like to document my dying days to help people (all of whom will die some day) have and idea of what goes through someone’s mind and body as it slows down and dies.

At this point, I’m happy and at peace with having made this decision. There’s something of a relief to it, not having to make any more big treatment decisions that could change my life in horrible ways.

I hope you that if any of you have this choice to make, that yours is made with such peace.

Two weeks post WBR: Rockin' it Like Junior Soprano!

The other day, KB was watching The Sopranos and so I sat down to watch with him. A scene started that featured the Tony Soprano's uncle, Junior Soprano. I got up and went into the bathroom to look in the mirror and realized (with some dismay) that I look a lot like Junior Soprano (see photographic evidence below). If my eyebrows were bushier and my glasses a little darker, I'd be a dead ringer.

Junior Soprano

Me

WBR has not been kind to my physical self.

I am now bald, my skin is thin, dry and pasty. My leg muscles have been wasting due to lack of use and steroids (that are used to inhibit brain swelling). My face is puffy also because of the steroids.

Double vision is my biggest challenge. In an attempt to correct this, I have a special prism on the left lens of my glasses which at times, makes me look walleyed (see photo left) - not an attractive look for anyone, really, but it does make for some good character acting.

It is a mighty cancer treatment that can make a 48 year old, relatively fit woman look like 60-something Italian mobster.

I know that I am looking like I'm diminished. People are doing a lot of staring and talking to me like they do some elderly folks - using loud, clear speech, talking down to me a little bit. At this point, I don't have the energy to confront it, so I let it roll off.

Luckily, I don't see my value as a woman in my looks. I've always thought I was a little funny-looking, so I tried to develop a good intellect and sense of humor, with a bit of silly self-deprecation. It works for me.

And so I press on through the effects of WBR, interested, aghast, and ever so fatigued. But all of the effects are not bad. This treatment has forced me to slow down - really see things and really listen to people - to be aware of things as and when they happen. It's  nice to be able to do that instead of thinking about the next project or thing that I need to do. Life is good.



P.S. Please don't see this post as me looking for validation of my "beauty". I need no such thing. Just passing on my experiences with WBR to those interested.

WBR: The Big Sleep

I have finished all but one round of WBR and the biggest warning that I got from the Doctor was that I would enter a state of fatigue that she compared with the hibernation of a bear.

I have no doubt that the timing of my short term disability leave from work is spot on. I am entering this hibernation period for sure. Although I have spikes of energy, those are followed by aggressive fatigue. The kind where you have to lay down RIGHT NOW whether that be on a bed, couch, floor, dicey back alley, bed of hot coals (name any other horizontal surface).

Here is a list of some weirder side-effects that I list here for anyone who may find them handy at some point:

1.  EARS.

My ear canals are so sore and itchy, it is driving me to madness. The radiation seems to have dried them out and they have become a major distraction. I do believe that malevolent forces could use ear-canal radiation for mind control. 

2. Warning – 2 = TMI point. For those male friends and relatives (or for any ladies who just don’t want to know), skip this point. Personal, feminine nastiness that you may not want to equate with me. I include it for the sake of transparency.

Oh, Ladies, it’s like Satan’s evil minions are trampling on the delicate flower of womanhood of this middle-aged cancer chick. They tell you that you may get mouth sores because the mouth is made of sensitive mucosal tissues. Well, my mouth is fine, but the mucosal tissue of my ‘nether region’ has been under attack. Yowza! I know it's not sex-related because, frankly, when chemo has taken the zip out of your ovaries and you've basically become a dried up, a-sexual person, you don't have much sex. Fortunately, my relationship with KB has always been more about a clicking of the minds instead of the booty. I think he's okay with it.

3. Excessive weepiness. Not depression, but tearing up about a lot of stuff, some of it mundane, daily stuff. It’s like my heart is now, not only on my sleeve, but pureed and spread all over my body. It’s a very vulnerable feeling and not one I’m comfortable with.

THANK YOUS

KB. Always KB. Pick ups, drop offs, all the laundry, cooking, cleaning, dog duties, paying bills, on his own while still teaching and grading and doing his academic work and trying to engage me in interesting conversation despite my insistence on talking about me and my cancer – a lot. 

JM. Friend extraordinaire. Covering any transportation to/from appointments when KB has faculty meetings at work. Good company plus the gift of Postum, a chicory beverage from the WWII era for which I have nostalgia.  Thanks, JohnnyCakes!

SM. Co-worker and selfless friend. Shenanigans (not her real name) has given me a ride to work throughout my WBR treatments. She lives in the city, so this means she has to drive west out of the city, pick me up, then drive back into the city (which is now completely under construction) to take me to work. All this and she was happy to be paid in craft beer. Sweet deal. Sweet girl.

CS. My boss. Understanding. Compassionate. I have no worries as far as my job goes. A good person.

Loyola University Chicago. My employer. Genuinely compassionate. So many well-wishes from people when they found out I was going on STD. Providing unbelievably good, reasonably priced health insurance that, because I have it, I have no medical debt at all, despite most of my treatments costing nearly 60K every three weeks.

All the good people out there sending care packages, good vibes and solid prayers on my behalf. I wouldn’t be here without you. May God’s peace and blessings surround you all.

And now, time for that nap.

WBR: On the downhill

WBR mask - yes, that's me in there.

I have officially completed 14 of 20 rounds of whole brain radiation, and I thought another update was in order to inform folks who may need this treatment someday and want information, or for those who are generally interested.

Note: Many people undergoing WBR are given 10 or 15 rounds. I chose 20 in the hopes that it would minimize my side effects. It's been a bit of a slog, but so far, it has been worth it.

I felt pretty good as the week started. Monday and Tuesday went much as Monday and Tuesday of the previous week. I really didn’t feel the fatigue until I got home after a treatment around 5:00 pm.  I did decide to put my physical therapy on hiatus, thinking that I could do without the extra drain on my energy resources.

Wednesday, I started feeling the fatigue earlier in the day and by Thursday, it was quite difficult to function. I operated one-foot-in-front-of-the-other, especially when I was physically moving. Wednesday was also the day that I officially started losing my hair. While in the shower, I was washing my head and when I brought my hands down, they were covered with my ¼” hair stubble. Weirdly, although I expected this, it was still somewhat unsettling.

It was the fatigue on Thursday that helped me decide to apply for short -term disability starting with my last WBR treatment, April 28^th. I applied for the full amount to cover anything ‘unexpected’ with the cautiously optimistic hope that I may be able to come back sooner.

On the other hand, my oldest daughter has suggested to me that perhaps I should think about retiring. This idea intrigues me. As she put it, it’s not like I’m going to be actually retiring, so why not do it while I can. It would be nice to do some things the “I’ve always wanted to do”. Maybe travel to see family. I will be giving this some serious thought.
Thankfully, I had Friday off for the Good Friday holiday (thank you, Catholic institution where I work) and was able to mostly relax and take it easy.

I am a little concerned about being able to make it to work the entire week next week, but my boss is very compassionate and I think I’ll be able to work from home, should the need arise.

Some side effects that I’ve had from the WBR: dry mouth, painful & itchy scalp, but gladly, no burns, and an occasional dull headache. I have also pretty much lost my sense of taste. I now eat on a schedule to keep up my energy and to keep from losing a lot of weight. I really get no enjoyment from eating itself (MAJOR bummer), but I understand that this will pass after treatment. I didn’t realize how much I really enjoy food. Not being able to taste makes life pretty boring.
Other side effects, I think these come from the steroids that I’m taking to help against brain swelling, a little bit of sleeplessness, but not too much, I’ve been a little emotional. Not depressed, but a little weepy without being able to find a reason to be. Happily, steroids have given me a “sense of well-being”, which is actually quite helpful.

I have been able to keep my wits and sense of humor about me so I’m not a complete bore to those around me. I am requiring more help, mostly in the form of transportation at this point. It’s difficult to admit that you need help, and to rely on others to provide it. Although people are very kind and gracious and really want to help, I think we all like to think of ourselves as people who can provide help to others but not as a person who needs to receive help from others. It’s a strange switch in roles and one that I’m not really comfortable with.

In an effort to feel better about this, I try to think about the opportunities that my illness gives to others to do good things – to help, to offer themselves to service, to, in Jesuit lingo, to be “people for others”. Oddly, thinking about this helps and makes it easier to accept people’s kindnesses for which I am truly grateful.

WBR: Almost Half Way There

Like Dorothy, I've gathered my friends and am well on my way!

I have completed nine of twenty rounds of WBR so thought I would provide a (as it turns out) not-very-interesting update from the WBR front (love that battle metaphor!).

So far, I’ve experienced some weird headaches and nausea which have been successfully controlled through regular use of 6 daily mg or dexamethasone (also something of a mood elevator, which combats the woe-is-me-wowzy-wowzy-woo-woo mood you can get in going through tough treatments), and periodic use of dissolvable Zofran, an anti-nausea medication. Monday and Tuesday were pretty normal days, with fatigue gaining momentum on Wednesday through Friday.

Today is Saturday, and I’m fairly useless, but not entirely. The fatigue is both physical and mental, but I was still able to get up and get dressed. I have created a short to-do list for easy tasks (write thank-you notes, fold laundry, organize health-related receipts. – all things that can be done without much physical exertion. I do a task, then relax on the couch until I get a rise in energy. Do another task, then relax on the couch until the next energy wave…yadda, yadda, yadda.

I’ve had some dry mouth and dry eye issues easily taken care of with chewing gum and Biotene mouth rinse, and liquid tears eye drops.

The double-vision is another issue that the doctor thinks is unrelated to the WBR. I have a couple of appointments with other doctors to see if I have an inner-ear issue, as the double-vision started a few days before the radiation and, I guess, there are no tumors in the right area of the brain to account for it.

That’s sort of a weird thing. You deal so much with the cancer treatment that when something non-cancer related shows up, it’s a little surprising. Sinus troubles, ear infections, in-grown toenails, all continue and have to be dealt with whether you have cancer or not.

All in all, things are going fairly normally day-to-day. I have been told to anticipate increased fatigue so am trying to put things in order at work so that others can cover for me in my anticipated absence.

I am feeling good – peaceful - and extremely thankful for all of the people in my life who have stepped up to drive me to work, pick me up from treatments, send me cool and beautiful things to cover my pointy head, or just to offer words of encouragement.

Thanks an awful lot.

WBR: The Balding of Ruth

Since I will be losing my hair in about a week, I thought that, to save on messiness and appearing as if I had the mange, I would to some pre-emptive hair removal. Below are a series of pictures taken by my photo-savvy brother-in-law, to document the event.

P.S. It was a completely liberating experience. :)



Step 1: After chopping off a few inches

Self-shave

Sister Cathie helps - payback for years of sibling rivalry?

 

Mom supervising Cathie's handiwork. Her remark when I was done?
"That is oddly attractive."

 

Balding is complete.

 

WBR: Pixilated blue and other weirdness

Last Tuesday, I started my 20-round regiment of whole brain radiation. It is, thus far, one of the weirdest treatments I've undergone.The side effect so far include:

Instability - a.k.a. walking around like a drunk person. Seriously, I feel like I've had a few beers followed by rowdy tequila shots. All the wooziness with none of the fun.

Weird headaches - These headaches are not constant headaches, but the sort you get when you have the flu or a sinus infection. Sometimes when I go from sitting to standing, or from lying on my back to my front, a wave of pain travels into my head, increasing in intensity, and then slowly subsides. One of these was so bad that I threw up afterwards and the radiation oncology intern made me go to the ER (brief stay, for CYA purposes, I'm almost sure).

Fatigue - a little in the evening when I get home from my treatments. Not too bad, yet.

The process itself is weird, too. You do see a blue light when you're being irradiated, in a circle, not solid color, but pixilated. And you do smell a sort of bleach-y smell (it could also be a burning smell, but don't like to think about that - ew.

The closest representation I could find
the for pixilated blue.

I am still "myself". I'm still able to handle problems at work and KB swears that having brain radiation has increased my sense of humor, which is nice because making him laugh is one of the joys I have in life.

I still have my hair, but will be shaving that off tomorrow to save on the messy natural fall-out (Get the radiation reference? Yuck, yuck).

I have a lot of support here and am thankful to all the friends, family and strangers who help to hold me up during those times when I just want to curl up into a fetal ball and let go. It has truly been a turn around for me. I used to think that  people were such jerky things, but you have all restored my faith in human goodness. Thank you, thank you, thank you.

Musical Theme for Whole Brain Radiation

Today it begins.

Reflections, Reconsiderations, and Eating Crow

Recently, I found out that I have 30 spots of cancer in my brain and that they are growing – slowly – but still growing.

My option?  Whole Brain Radiation. The queen bee of things I’ve been dreading and hoping that I would never be asked to consider. I used to believe that if it ever actually became a thing that I had to do, I would absolutely refuse and accept death.

Life is funny, the way it works to make you feel like a boob.

In the recent past, and in this blog even, I have spoken about people who take horrible treatments and who fight to the bitter end as if their decision was stupid. Well, I can say now that that came from a place that was puffed up, prideful,  terribly short-sighted and not at all compassionate.

The truth is that when my reality involves and “okay, you can go through potentially horrible treatment, OR you can die in fairly short order in a horrible way,” I choose the potentially horrible treatment that terrifies me. Not because I am brave, but because I am afraid. Going through treatment I believe, although billed as the nobler and braver choice, is truly the opposite. Saying no to treatment and facing death – that’s absolute bravery.

I hear this song in my head (totally unrelated to the tumors):

Cowardly, cowardly custard!
Can’t cut the mustard!

 

 

So now I eat my crow. I can’t not do it - the radiation. I’m not ready to die yet. So I understand now. Why people keep seeking treatment. They’re not ready, either.

At what point (if any), I will be ready, I don’t know.

In the meantime, WBR, here I come.

A Picture is Worth 1000 Words

God and Coincidences…or are they?

In the past, I have been a doubter. Although I have deep faith in God and that he has infinite love for every person whether they believe in him or not, when something coincidental happens, I am more and more likely to take a second look at God’s hand in the matter. Some coincidences are TOO coincidental.

For example, last Monday morning before my scan, I was telling KB that I was feeling low (actually, he told ME I was feeling low after hearing me sighing over and over and seeing me sit on the (closed) toilet seat with my head in my hands for an unusually long period of time.). I told him that I was feeling very isolated and alone, and having a bit of a hard time coping at the moment. We both know that it comes with the cancer territory.

So I’m going through my morning in this pre-scan, depressed fog. I go to my appointment, go to the changing room and change out of my clothes and into my two dressing gowns (one open to the back the other open to the front). I grab my barium smoothies and head out into the waiting room area and I almost bypassed the one with three women talking animatedly, but decided to sit with them.

They were all talking about cancer. All three of them had cancer (or had had cancer). One had recurrent breast cancer and was now stage IV, one had a sort of muscle sarcoma that had recurred and was not stage IV, and one had had bone cancer but was there to support her friend who had the muscle sarcoma. Once I heard what their topic of conversation was I piped right in and started asking questions and contributing my experiences.

It was so spontaneous. Genuine. Raw and real.

I’m not sure if you tried, you could repeat the experience.

Anyway, we all had our scans and parted with kind words. When I left, I left my dark clouds behind, too. I felt deeply peaceful.

Now the doubter in me says, this was just a happy coincidence. My faith tells me that, just as we lose no hair without God being aware of it, God meant for me to be there, to feel the support, to know that I am neither alone nor isolated.

God’s keeping tabs on me.

And he’s keeping tabs on you, too.

God’s peace.

Blessings

I can say it no better. 

Shhhhhh....

listen.

Sugar and Vinegar: A Story of Two Sisters

I have one sister. She is a few years older than me and since my birth, we have pretty much been at odds (well, not since the cancer). The main reason, I believe, is that we are very, VERY different people.

Cathy is a tender woman - very nice and kind, sweet-tempered and compassionate. She is a great hostess and will listen with great patience and tolerance to whatever (inane or vapid) thing that people have to say. People love her.

I, on the other hand, often times lack tact. I give my opinion whether it's asked for or not, and can respond in rather brusque ways. I do not have a poker face. If you say something that I think is idiotic or nonsensical, my face will say that to you long before my tactless mouth does. Honestly, I can be a bit off-putting.

Our childhood was full of arguments and fights and me embarrassing her and her annoying me, but secretly, I always envied her. I also always worried about her. Especially as we began to age. The women in our family tend to live well into their nineties. Most men die in their seventies. What would happen to her during those very vulnerable 20+ years after her husband had gone to his reward and she was alone? I didn't worry about myself being alone because I love it. crave alone time. She, however, has always loved being around people.

So even though we weren't on speaking terms at the time,  I built this very elaborate fantasy about how we, after our husbands had croaked in their 70s, would move in to an old house together with a bunch of cats (and one dog, at her insistence). I also recognized that, because of our respective natures, the neighbors would probably love her and find me off-putting (see illustration below).

Unfortunately, cancer has interrupted my fantasy and what I thought would be a sure thing, is now everything but.

As much as I hate to admit it, it has been the cancer that has brought us together, so perhaps the fantasy is now. Happy Birthday, Cathie. With all the love I can send. ~ Ruthigus

Living in the Land of Cancer Statistics

When you are diagnosed with cancer, you become aware of statistics – painfully. People, even doctors assure you that statistics are just that – statistics, and that they don’t speak to the “individual experience.” Nonetheless, there is still a very explicit desire among those who have cancer to “beat the odds.”

After a recent brain scan, it was suspected that I had Leptomeningeal Carcinamatosis, which is cancer of the covering of the brain and spinal cord. The survival statistics for this cancer are beyond grim – four to six weeks without treatment and two to three months with treatment.

I’m not ashamed to say that I was shaken to my proverbial bones.

Even though it is somewhat rare – 5-10% of NSCLC (Non-Small Cell Lung Cancer) patients get it eventually, I was hoping like a mad woman that I was in the majority statistic this one time, thinking, “Come on, 90%!” And, happily, after having a spinal tap (it’s not just a movie anymore), I found that the results were negative.

Now that that’s over, my onc thinks that I should try to get into a clinical trial where they’re testing a immunology drug. So this Friday, it is back for another VATS surgery to get the hefty tumor sample required for genetic testing. Being part of a study, means dealing with more statistics.

Lung cancer world is full of statistics and, at stage IV, the statistics are pretty freaking bleak. Here are some of the Lung Cancer/NSCLC stats. I’ve placed an ‘X’ next to those where I fall into the minority and “beat the odds” so to speak, and not always in a good way:

1 – In the U.S., 30% of people are diagnosed with some form of cancer.  X (I’m also an oddity because I have no family history, never smoked, and had a very healthy lifestyle.)

2 - In the US, lung cancer comprises 14% of cancer diagnoses but a full 27% of cancer deaths. X (There was a point in the diagnosis period when we were hoping for breast cancer. Can you imagine hoping for breast cancer?)

3 - NSCLC comprises approximately 84% of all lung cancers.

4 - People diagnosed with stage IV lung cancer have a mean (average) survival rate of 10 months. X  (3 years and counting!)

5 - Of the people diagnosed with stage IV lung cancer, 54% will have a treatable genetic mutation that responds to oral therapies (although it does not increase survival times).  X (I have no known mutation, treatable or otherwise.)

6- Of the people diagnosed with stage IV lung cancer, 60% have a cancer that grows because it has turned off their immune system as it relates to lung cancer. (TBD – I’m hoping to follow the crowd on this one.)

7 - Of these 60% who have undergone immunotherapy for the above, 24% have quick, positive, and long-lasting responses (meaning, the immune system starts fighting the cancer and the cancer shrinks).  (TBD)

Crossing my fingers for that 24% of that 60%.

Gotta love statistics!

A Taste of Disability - Spit it out! Spit it OUT!

Since my last post, I have purchased and have been using forearm crutches to get around.

I love them.

I love them because:

1 - They keep me mobile.
2 - By keeping me mobile, they keep me physically active.
3 - There is considerably less pain walking with them.
4 - Because I hurt less I don't have to take strong pain meds that make me woozy and make me vomit, which is a problem when you spend a good portion of your day on public transportation. No one wants to sit next to Sister Pukes-a-lot.

Some people have told me that they find it sad to see me getting around on my crutches. This always puzzles me because if it wasn't for my crutches, I would not be getting around. I'm sure they see it as evidence of increased disability. In actuality, my crutches keep me from being disabled.


So yesterday, I went for my usual MRI. MRI techs get very unnerved about crutches because they're fairly large and made of metal. I've been told that in the MRI room, they would be, "quite the weapon."

So to be safe, those of us on crutches or metal canes, must use a special wheelchair that must be made out of some sort of metal that isn't affected by magnets.

Now, there's something about a wheelchair that changes how people behave toward you. Here's my example: I'm sitting in this wheelchair in the waiting room, watching Wheel of Fortune (because you're not allowed to change the channel of the TV in the waiting room) and the MRI tech walks up to me. She bends slightly at the waist, looks at me with big, puppy-dog eyes, cocks her head and says very loudly and very slowly, "MS  ASH-TON?  HAVE  YOU  BEEN  ABLE  TO  USE  THE  BATH  ROOM,  YET?"

I was taken aback. I looked at her with a look that my husband and children would certainly recognize as my "WTF!" look. To my horror and without knowing it, I had apparently been given a  wheelchair that  not only makes the occupant lose their hearing, but also drops their IQ at least 50 points.

In response, I sat up tall in the squatty chair and assured her that I was fine and ready to be scanned. The, what I considered, baby talk continued until I moved from wheelchair to MRI table without assistance. Only then did she talk to me like I was an adult person. The question is, was it my ability to move without the wheelchair, or that I was out of the wheelchair that made the difference? I'll never know. What is it about age and infirmity that makes other people act like moronic bone heads?

This experience lends a certain dread to any future day that I might be in a wheelchair on a more permanent basis. I imagine that regularly being treated with condescension could be very, very wearing - and turn you into one bad-ass, snarky bitch.

RIP, Patrick

The cancer blogging community lost another member this week.

http://obits.pennlive.com/obituaries/pennlive/obituary.aspx?pid=167994241


Side note: 2013 has sucked the big one in this regard.

Each death is an occasion to mourn the loss of the person and be angry at their cancer.

It is also an occasion to mourn my own loss and be angry at my cancer.

Hate you, Cancer.

RIP, Patrick.

'The Trouble with Blogging'

Click to see my first comic strip:  new series name: 'The Trouble with Blogging'

Hello. I have cancer.

Hello.

 

My name is Ruth and I have cancer.

 

Thanks to bitstrips.com, Ruth created me and can create more of her own comic characters and comic strips. She will add these to the blog now and again to spice things up and add some 'fun' to this what-has-become-the-blog-of-suffering-and-death.

 

Not that there's anything wrong with a blog-of-suffering-and-death, but if I'm gonna talk about  suffering and death so much, why not inject a little creative fun into it?

 

I do feel slightly guilty giving stage IV lung cancer to an innocent cartoon, though...

 

 

 

 

Just a Touch of Dread

Addendum to this post: I am not talking about stopping chemo altogether, but the most toxic agent. I'm sorry that I worried you people. Although there may come a day when I do talk about it, so be ready.

This past year, a couple of cancer blog authors that I have followed have died, one just a few days ago.  These young women were in their primes (26 & 31 years old) but handled their cancer in very different ways.

One who had adenocarcinoma (my kind of cancer) of the esophagus, underwent surgeries and chemo, but once she had a recurrence, decided to eschew further chemotherapy. She decided to eat healthily and exercise instead knowing that it probably wouldn’t make a difference. She died about six months after her recurrence was discovered and spent the last month of her life on an island in Maine with family and close friends. She died peacefully in a beautiful place. She had survived two years since her initial diagnosis.

The other who had Hodgkin’s Lymphoma, underwent initial chemo and then a marrow transplant. She continued to seek treatment, after treatment, after increasingly toxic treatment. The photos of her on her blog showed a person who looked almost nothing like the person who started the blog. She was bald and swollen; she had bleeding out of her skin and horrible thrush and mouth sores. She spent much of her last months in the hospital. Finally, her body just gave out. Her husband said she died peacefully, but in her last posts she talked about suffering from major pain and panic attacks. She had survived four years since her diagnosis.

Each of these deaths left me a bit stunned, heavy-hearted, deeply sad … and with just a touch of dread. It’s becoming time for me to make some treatment choices and I ask myself, which person would I rather be:  the one who lives four years but suffers horribly and spends much of their time in the care of strangers, or the one who lived only two, but is surrounded by home and family and beauty?

We, the cancer afflicted, are encouraged to fight, fight, fight and that’s all well and good if you have a chance of winning. But I don’t, and if my suffering serves no purpose but to add to medical statistics, then fighting to the end…well…seems kind of stupid to me.

Perhaps I am not as tolerant or tough as I once thought. The truth is, I hate, hate, HATE how I feel on this tough chemo.  It could be vastly worse, I know, but I’m not sure I want to tolerate it anymore. 

One or Two?

The 2nd leg of my first round of new chemo has gone very smoothly. Other than a headache and chilling through the weekend, I really have had no other symptoms. I have energy and although my appetite has not returned completely, it is on its way. I am very thankful for this, but it has me thinking. Do I want to continue my current chemo cocktail?

My new drug regimen for the 1st leg of each round of chemo is Avastin - an anti-angiogenesis targeted therapy, Gemzar - a 2nd round NSCLC chemo agent, and Carboplatin - a platinum-based drug that causes all sorts of, excuse me, shitty, shitty side effects. Lethargy, relentless nausea, vomiting, neuropathy, shortness of breath, heart palpitations, chest pains, and chemo brain, among others. The Gemzar/Carbo combo is popular in Europe and it seems to be used more in the US recently. I had the Carboplatin at the very beginning of my chemo treatment in 2011 and it was difficult. The effects from it this 2nd go around have been worse, so I'm beginning to wonder if the benefits of the Carboplatin are worth the week-long feeling that I could puke up my shoes at any minute.

I looked up some statistics and it seems that, although there is little data regarding Gemzar alone, Gemzar with Carboplatin makes little difference in survival times when compared to other chemo agents. However, it DOES make a difference in how people feel while they are surviving. Because it is so harsh, people feel better without the Carboplatin (surprise, surprise).

So I'm taking this and next week to consider the real possibility that I'm done with the Gemzar/Carbo mix or whether I'm willing to sacrifice one week of every three for an extra 1.6 months.