Email: (Nana to friends & family)

Hello again,

Papa and I got home about noon today.  He is very glad to be home!  So far he is settling well.  Kari was here to help us.

He has decided not to do the radiation and chemotherapy.  He was wavering a bit and two days ago decided not to do it.  That day he woke up and his speech had gone almost back to the level it was when he entered rehab.  He had been getting slightly weaker also.  Yesterday I asked the doctor to get a CT scan done to see if there was bleeding or swelling in the brain.  That was done and showed no signs of either.  The radiation oncologist said he should be put back on a higher dose of steroids.  That is beginning today.  We’ll see if that helps.  Also, his platelets are low and chemo would likely lower them more.  So, we are trusting the Lord for His will!  One day at a time!  

I got two plaques from the rehab gift shop that I think are very appropriate for us that I will be setting on the kitchen counter for us to remember:  

     “Don’t count the days, Make the days count”  and

     “I know it’s what I said, but it’s not what I meant”

Thanks for your continued prayers.  We’ll probably need them more than I even realize now!

Oh, tomorrow we have an appointment with the neurosurgeon and next week with Papa’s heart doctor.  They will have to continue the balancing game between what he needs for his heart and his brain.  In a couple days, a nurse will be visiting to set up home therapy–speech, PT and OT and nursing.

Love and gratefulness,   Nana

 

My Reflections:

Today I catch J Jr. reading to Little M:

Does my heart good.

Later, I meet up with Nana & Papa at their house.  Papa is back home!  I help get him settled in (not that there’s really much that I do, but it feels better being there and making sure everything is okay).

I ask Papa if he’s okay with me starting a blog about his journey with cancer, about what the days ahead will look like (I figure getting his permission is the right thing to do, but I don’t mention that I already wrote my first post last night).  I explain to him how I was looking for stories about people with his type of cancer and how I couldn’t find much; how I wanted to write this story so others could know about what it might possibly look like.  Papa said something to the effect of “Sure!, no problem.  Feel free to write about the good, the bad and the ugly.  You can even tell them I’m more like C Bear & Little M now [in the way I talk & act].”

That evening after dinner, after I’ve returned home, our neighbors graciously watch J Jr. & C Bear so J & I can go for a walk with Little M in a nearby park.  To just walk and talk and get away for a bit.

Walking, & talking, & getting away for a bit… while Nana & Papa are back at their home; walking & talking & “getting away for a bit” no longer being things they can take for granted.

Glad Papa is finally home.  Glad Papa is in such caring & patient hands.  Kudos to Nurse Nana!

Blog Post: (from blog started at the time of Papa’s illness)

Stepping into the Unknown

Tomorrow Papa is being discharged.

After brain surgery, a week and a half in the hospital, and a 4 week stay in the rehab facility, he is finally cleared to return home.

He was to begin radiation and chemotherapy treatments tomorrow.  6 weeks of radiation and Temodar, followed by Temodar for an additional 6 months.  His brain had been mapped, the prescription had been ordered.  The plan was in place.

But plans change.

Just yesterday, Papa decided to forgo radiation and chemo.  The risks involved weighed heavyily – fluid retention, low blood counts, PCP (lung infection), fatigue, nausea, diarrhea…..  And Papa’s pre-existing heart condition and past experience with C. diff only added to these risks.

They told us he has 1 year max without treatment, and, most likely, 2 years max with treatment.  Either way, his quality of life is anyone’s guess.

And so tomorrow we step into the unknown.  Papa resumes life at home – a new life, a different life.  And for now there will be no daily cancer center treatments, no normal protocol to follow.

What does it look like when you’re on your own with treatment, or in this case, without treatment?

We’re honoring Papa’s wishes, we understand where he’s coming from as best we can.  But we’re not throwing in the towel, giving up, burying our heads in the sand.  Life is for the living, so we’ll live, and help Papa live as best he can.  We don’t know what the future will hold, so we’ll take this thing one day at a time, come what may.

It’s a little scary (or a lot), but strangely I feel at peace in this moment.

Tomorrow?  Well, that might be a different story….

Text: (a friend to me)

Praying for your dad all the time.

 

Email: (from me to another friend)

Thanks for your concern about me and my dad.  We had a good chance to talk yesterday.  His speech has regressed a bit (they’re not sure why), but we could still understand the gist of what he was saying.  He’s decided not to do treatment and we’re ok with that.  If treatment brought lots of hope with it about curing him or adding years to his life, then I’d be upset he wasn’t pursuing it, but since treatment doesn’t add a lot of hope, and has significant risks for added complications, I feel at peace with his decision.  Kind of scary not knowing what lies ahead and not following “recommended” protocol for this, but that’s where we have to trust God in working in this in His way.  Definitely still want some control and have already ordered some nutrition books/cookbooks to fight cancer  (might not do any good, but at least helps me feel I’m doing something rather than nothing to help the cause).  Bottom line though, is that he’s in God’s hands, and yes, it’s hard to relinquish control and fully trust him to work how He wills.  One step at a time; I’m sure God will teach all of us a lot through this ordeal.  Very glad to have faith in Him… wouldn’t want to be going solo on this one!

Thanks for your prayers and your friendship.  Praying for [your husband’s] mom too and that whole situation.  Cancer stinks.  Period.  But glad [your husband] has Jesus by his side in dealing with this!  We’ll pray that the miracles will keep rolling in for your family.  God is good!

-Kari

 

My Reflections:

My online research for books about nutrition and alternative cancer treatment takes precedent over a spotless kitchen today.

Case in point:

 

And I end up with an online cart full of titles such as Cancer – Step Outside the Box, The Cancer-Fighting Kitchen, Crazy Sexy Diet, Crazy Sexy Kitchen, and an Anti-Cancer DVD.  Even before that shipment arrives on my doorstep, I’m officially ready to embark on my own course of Fighting Cancer without Drugs 101.

At some point groceries are bought (at a “real-life” store) and are deposited in the war zone (i.e. kitchen).

After dinner,  I watch Crazy Sexy Cancer while attempting to keep Little M content along with putting  said kitchen back in order.

And I marvel at the craziness of it all.  Baby & kids, groceries & meal prep, messes & cancer.

Papa’s cancer.

And me, so desperately clinging to any remaining hope that there is something to make it all better.

Something….

Crazy, Sexy Cancer.

I can’t help but inwardly chuckle thinking how Papa would react to hearing his cancer deemed sexy.  Thinking how crazy he’d think this whole approach is, “normally,” and especially now in his current state.

Regardless, I find it helpful to learn & hear from the perspectives of others.  Somehow it helps to sort out the mess, even if only slightly.

So I’ll continue to listen, and watch, and read, and research.  For as much as it’s worth.

My Reflections:

J, the boys & I all visit Papa at rehab.

So glad this place has a room where families can gather, talk, eat; kids can run around, be loud, play.  Nice that we usually happen to be the only ones in it too.  That helps.

Cause sometimes we’re noisy.

And messy….

Thank goodness for the family room at rehab.

And plenty of wet wipes….

When we first arrive today, we immediately notice the change in Papa’s speech.  These past couple weeks he’s been improving so much, getting easier to understand by the day, and understanding us better too.

And now it seems he’s lost any ground he’d gained.

What’s happened?

He’s discouraged and I remember words from a friend from church.  She’s worked as a nurse at this very rehab facility, in the very brain unit Papa is in.  She told me that brain injury and recovery is rarely linear, you’ll have your ups & downs, gains & set-backs, and often there is no clear reason why.  Recovery from brain injury is unpredictable.

And now I see first-hand what she was talking about, see how one day Papa’s speech is almost back to normal, and the next it’s as much of a jumbled mess as the day he got here.

Discouraging.

Papa is clearly discouraged.

Papa lets us know that he’s decided not to proceed with treatment.  And it’s tough to hear him say this.  It’s not an easy decision, but it’s his decision and, considering everything, I can’t say I fault him for what he has chosen.

A few days ago, he’d asked me my thoughts on this.  What I thought about him proceeding with treatment or not.  I told him I understood it was a hard decision, with the risks involved and unknowns of how it would affect his quality and length of life.  But I told him I selfishly wanted him to pursue radiation & chemo, at least some part of it, because I wanted to keep him around.  At least if he was doing some sort of treatment, we’d still have hope to cling to:  hope that things would improve, hope that we’d have more time with him.  I told him it was hard to think of him forgoing treatment, because that would mean we’d be giving up hope, giving up that chance.  It was scary to think about what giving up that hope would mean.

And now we need to think about it.  I need to think about it.

But treatment or no, I will not give up on hope that easily.  I’ll research alternative treatment options, still try to do something to help Papa even if chemo & radiation are now out of the picture.

I cannot just stand by and do nothing.

I’ve got to do something.

I’m at least glad when Papa agrees to keep the appointment I made for him with our oncologist friend for a second opinion (I’m sure just a means to placate me more than anything, but I’ll take it).  We’ll just have to wait and see what comes of that.

My Reflections:

Tonight we have our Bible study group and their families over for a last hur-rah of summer gathering.  Nothing fancy, just a low-key time of food and catching up with each other’s lives (and swimming for those brave enough to enter the chilly waters… by the way, the kids are much braver than any of us adults).

Grateful for this group; for their friendship, laughter, and support (in good times and in bad).

 

Email: (from J’s aunt to me)

I am so disappointed to hear the rep was not helpful!!!!!….

Will pray even harder.

BUT God opens doors that no one can close and closes doors no one can open.  His ways are perfect and what seems right to us may be good, but not His will.

Love this passage… Isaiah 43

“Fear not, for I have redeemed you;

I have called you by your name;

You are Mine.

When you pass through the waters, I will be with you;

And through the rivers, they shall not overflow you.

When you walk though the fire, you shall not be burned,

Nor shall the flame scorch you.

For I am The Lord your God,

The Holy One of Israel, your Saviour;

…Fear not, for I am with you.”

Love you so much,

Your Aunt

 

Email: (response from me to J’s aunt):

Thanks!  Love that passage and such a fitting reminder right now.  Am feeling better about things now, just in the moment of that phone call yesterday I was pretty discouraged – had seemed like such a great option, and was tough to hear they couldn’t help us right away.  Still an option though, and I might press further if other treatment options don’t pan out.  

Did speak w/ another oncologist yesterday and set up a second opinion apt. for his first  available in a couple weeks.  So we’ll go ahead and start the chemo and radiation as planned with the first cancer center we met with and then meet w/ this other oncologist to make sure we’re on the best course.  Feeling @ peace w/ this ( at least for today!).

Thanks for your support & prayers, means so very much.  Your tips & links are great too and feel free to keep ’em coming as you come across them : )

Love,

Kari 

 

Email: (from Nana to friends & family)

Hi,

Good news!  Papa is to be discharged from rehab next week, at which time I will take him for his first radiation treatment.  That will continue 5 days a week for 6 weeks.  Chemo will begin that evening, at home,  with 3 pills to be taken 7 days a week during radiation and continuing five days a week, one week each month for 6 months to a year.  That is if all goes well and he does not get too sick or his bone marrow or platelets don’t get too low.  

He is doing well and we pray he will stay that way and that all will go well once he gets home.  We are to have in-home speech and physical therapy for as long as they determine necessary, along with discipline on our part to do exercise and activities for his continued improvement.  Please pray for our wisdom, peace,patience, strength and stamina.

Again, thank you for your love and prayers and “hanging in there” with us!  We know it has been vital for bringing us this far!  Praise God!!

Love,   Papa and Nana

 

Text: (from me to one of my DPSG friends):

Since you offered up [your husband’s] scientific services, the chemo drug they’re putting my dad on is Temodar along with Zofran (anti-nausea) and Decadron (steroid) and Bactrim (antibiotic to prevent PCP lung infection).  Don’t know what he can do with all that info, and no pressure to do anything, but for what it’s worth, there it is.  SO great hangin’ with you the other night – so good to get out w/ you ladies and thanks for listening!

 

Email: (from me to a friend)

Oh my goodness!  Have had a note on my fridge reminding me to email you for quite some time now…. Finally getting to it – sorry for taking so long!  

Thanks so much for the sweet email.  It’s been a rough month and a half, but my dad is doing better.  I know my mom just sent an update with all the details, so I won’t repeat all that.  Big stuff ahead; the doctors say the next six weeks should be the most difficult as far as treatment goes… so we’re hoping/praying he tolerates it well and complications (especially with his heart-related issues) don’t arise due to side affects from the chemo.  One day at a time, just encouraged he’s made big strides these past couple weeks.

Thanks for checking in about the get-together date and trying to coordinate that with our schedule.  I’m sorry we’ll be missing it this year, just feel like there’s a lot going on and feel the need to pare down a bit.  Being in a social situation with a lot of people I don’t know too well also seems a bit daunting these days…. I just don’t have a lot of excess mental energy to be “on” socially like you have to be when you don’t have that familiarity and have to make small talk, etc.  Does that make sense?  Not meaning to sound rude, just trying to be honest with where I’m at right now.  

This doesn’t apply to your family though! – definitely feel comfortable around you guys and hope we can get together another time soon.  Think our schedule is pretty open next month at this point.

Take care!

 

Blog Post: (from a previous blog I had during Papa’s illness)

It was the kind of call I wasn’t planning on making.  Ever.

But yesterday, in the matter of hours, 3 different sources had all encouraged me that this was the right call to make.  Bolstered by their recommendations, today I took a deep breath and dialed the #.

A complete stranger picks up and says something like:  ”Hello, thank you for calling [blah, blah, blah].  How can I help you?”

Really?  No automated message?  No buttons to push to connect me to the correct department?  No annoying hold music?  A real, live person, actually picked up the phone to talk with me right away?!  

How could SHE help ME?  I wasn’t sure how best to articulate what I was looking for….

What exactly was I looking for?

I didn’t have any prior experience with this sort of thing.  I was going in blind.

Me:  ”Uh, yes, I’m calling on behalf of my father.  He was recently diagnosed with brain cancer.  He is to start treatment next week, but we’d like to get a second opinion.”

Her:  ”Oh, I’m so sorry to hear your father has cancer.  I’d be glad to be a cancer advocate for your family.”

Suddenly, I’m blinking back tears I hadn’t expected.  Wow, she cares; we have an advocate!

She continues to talk:  ”We treat patients within a 15 mile radius of our center; where does your dad live?”

I explain he lives further than that, but inquire if it makes a difference if he stays somewhere closer than his home, like my home.  But she dosen’t really seem to be listening, just continues on with her questions.

“What insurance does your father have?”

I tell her I think it’s Medicare, she goes on to inform me that their doctors only take a limited number of Medicare patients at a time…. right now they wouldn’t be able to see my dad for another 8 weeks.

8 WEEKS?!  That definitely won’t work.  He needs treatment NOW!  I ask more questions to get further clarity, but quickly realize this stranger on the other end of the line is simply reading off a script.  As my questions don’t fit into her script, she simply gives round-about scripted answers that don’t really answer anything at all.

Heart sinking, I realize I’ve met a dead end.  This stranger’s well-meaning “concern” and claims of “advocacy,” which had initially seemed so encouraging, were merely a part of her tidy little script.

The conversation ends with her giving me a couple #’s of possible organizations/associations that might be better able to assist us.

I hang up feeling defeated and annoyed.  Truth is, I didn’t like her script.  Truth is, I had a script of my own and she wasn’t following it.

My script of the conversation had started out the same, albeit with a dash more genuineness in the concern department.  And in the scheduling department?  Well, she was supposed to pull some strings and fit us in, oh…. tomorrow, or by the latest in a few days.  She was supposed to be encouraging and offer us some sort of tangible hope.  Instead I got the door….. and a couple phone #’s.

How the heck did we get to this point?  This past month and a half has been HARD:

What looked to be a stroke for Papa, turned out to be a malignant brain tumor.

Communication got very difficult (and creative) as Papa’s speech and comprehension were significantly affected.

Surgery was performed to remove the tumor.  It proved successful, but left Papa in a weakend and discouraged state.

Oxygen, a blood transfusion, and a feeding tube were all required post-surgery.  Communication became even more difficult.

A long hospital stay was followed by weeks in a rehab facility.

And now radiation and chemo are looming ahead of us with complications all their own; leaving us unsure of which is worse, treatment or no treatment.

And none of this is following the script I would have written for it.  Yes, Papa is improving, he is getting his strength back little by little and his speech is becoming easier to understand with each passing therapy session.  I’m grateful for this, I’m grateful to have Papa still with us, for him to have endured all he has these past weeks.  But at the end of the day, he’s got brain cancer and a pretty grim diagnosis…. no known cure, likely tumor recurrence, two years at most for life expectancy….. not the makings of a very optimistic script.  Not a whole lotta room in the margins for hope.

“But God.”

That’s what our pastor spoke from the pulpit last Sunday.  There are many verses in Scripture that include the phrase, “But, God…”  As I looked up verses online with this phrase, I found a quote on one such site,

‘But, God.’ What follows this significant transition is intended to challenge our faith and change our life.  When He is brought into the picture, God makes all the difference.  (Moments With The Book)

“My flesh and my heart faileth:  but God is the strength of my heart and my portion forever.”  (Psalm 73:26)

“The grass withers and the flowers fall, but the Word of our God stands forever.”  (Isaiah 40:8)

“But God chose the foolish things of the world to shame the wise, God chose the weak things of the world to shame the strong.”  (I Cor. 1:27)

Not that knowing this, knowing Him, suddenly makes it all easy, but knowing He is, and will be, faithful, does give hope when the situation, by itself, seems hopeless.

“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed….  Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes on not what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”  (II Cor. 4:8-9, 16-18)

As I recalled and wrote out the verse above, I had a nagging feeling I’d already written it in a post before.  And then I remembered; a post in which I mentioned someone battling cancer and the faith and dignity displayed by the wife and daughters of this man.  Little did I know I’d be facing a similar situation a little less than a year later.  Again, not the script I would have imagined for my dad or our family.

But God.

Need to keep reminding myself of that, need to keep remembering He is the source of our hope.

“Peace I leave with you; My peace I give you.  I do not give as the world gives.  Do not let your hearts be troubled and do not be afraid.”  (John 14:27)

We love you, Papa!  We are in this with you – with hope & prayers to see God work through this in mighty ways!

My Reflections:

I go to rehab and talk to Papa about treatment.  He’s discouraged and uncertain about what to do.  He wants to know what I think, what Nana thinks, what my brother, Mark, thinks.

I let him know I’d like him to pursue treatment.  Because we don’t want him to give up.  We want him around as long as possible.  And if there’s a chance….

We also talk about getting a 2nd opinion.  I let him know I’ve run into a dead end with one cancer center, but there’s someone else who might be able to help.  A friend of a friend is a respected oncologist.  He knows Papa and could possibly give added insight to what’s best;  give us his honest, unbiased opinion.  Another opinion can’t be a bad thing.

Papa agrees, although a bit half-heartedly.  But I’ll take it.

I let Papa know I’ll work on getting him an appointment.

And when I get home I do just that.

My Reflections:

Today I try to figure out how to get Little M to feed himself….

I get creative with a rolled-up dish towel because my search at the baby store last night for one of those bottle prop-up pillows came up empty (I was looking for something like this).  Guess baby stores don’t want to encourage baby self-feeding.

Dag-nabbit.

I’m not a big proponent of it either, the whole baby-mother-feeding-time-bonding thing makes sense…. I just could use a little extra help these days, you know?

Somehow in the midst of crisis, ideals go out the window.  Instead of 5 sweet bonding snuggly feedings with baby, you opt for 3 or 4 and roll up a towel and prop that bottle up a time or two so you can wash some dishes; or get a load of laundry done.  Because life piles up and life takes unexpected turns.

And speaking of baby feedings, can I just give a little background for what’s brought us here, with Little M and this bottle business?  Let’s just say that nursing has never been an exactly rosy experience (with any of my three sweet babes).  It hasn’t been horrible, but definitely not as wonderful an experience as I’ve heard it touted by so many others.  I’m well aware that scientific studies have proven “Mommy’s milk is best.” I get it and I’ve sought to stick with it as long as my sanity would allow, consulting books, the web, and even a session with a certified lactation consultant.  With J Jr. and C Bear this lasted for their first 6 months before I made the switch to formula for the remainder of their first year.  And even then, I still felt the guilt of giving up nursing.

This time around has had it’s added challenges, though.  With Papa’s condition, life has been much different at this stage with Little M.  Those first couple weeks I dutifully toted my stylish black “briefcase” (i.e. pump) to the hospital: to the surgery, to the ICU, to Papa’s transitional room.  Making use of bathrooms for privacy sake, with dish soap in hand for washing all those crazy pump parts and ice packs and cooler bag for storing that precious liquid gold (my hats go off to the many pumping master moms who carry on this ritual for months on end for whatever circumstances they find themselves in).  I’m lucky that Little M took a bottle like a champ, but with all that was already going on with running to and from the hospital, juggling motherhood and life at home, dealing with the emotions of Papa’s condition…. keeping up with “Mommy’s milk is best” supply was just one more added thing.  And it was just too much.

Something had to give.

And so it did.  I had to let go of my “ideal” and the guilt associated with it and replace the “best” with the “good.”  Being willing to diverge from my 6 month plan and do things differently this time around.  Because it would be okay.  Because Little M would be okay.  Because sometimes I create things to be a much bigger deal than they really need to be.

So I found middle ground that worked best for me and Little M too.  Nursing him first thing in the morning and right before bedtime and giving him formula during the day.  My supply didn’t run out, Little M remained well-fed and healthy, and I let go of the mom-guilt.

And went searching for a self-feeding bottle pillow.

Cause life gets tough sometimes and you do what you can do and let go of the rest.

 

*Disclaimer:  I totally get that Breast vs. Bottle is a hot-button topic.  I’m not here to judge or picket a cause or even “go there” with touting one over the other.  Just here to give an account for what worked for me in my unique & personal situation.  Happy to say that Little M has turned out just fine and I give a hearty pat on the back for any mom who’s nurturing and loving on her baby no matter what milk option is on the menu.  Because that’s really what’s most important, right?  Cheers and happy feeding!

Nana’s Notes:

Need to be trained to flush PEG tube – that has to stay in 8-12 weeks.

Papa ate lunch with speech therapist for observation.

Community outing after lunch.

 

My Reflections:

Today I’ve got a GNO (Girls’ Night Out).

With the DPSG (I’ll translate that one later).

Before I go on though, a little DPSG history is in order:

A number of years ago, J’s mom passed away suddenly.  It was a rough time for him, for his family, and for me.  I learned a lot about grief.  Most importantly, I learned that grief really sucks.

Then three years ago, I’m in a women’s Bible study small group, and one of the girls in my group loses her mom.

I haven’t lost a mom, but I know grief sucks, and I ask this friend out for a cup of coffee or similar.  And we get together a few times and find it encouraging to share our grief struggles and just plain life stuff in the midst of it.

And then the next year, the two of us are together in another women’s Bible study small group, and a girl in that group loses her father.  So the friend who lost her mom, and I who’ve lost my mother-in-law, invite the friend who’s lost her dad to join us for a cup of coffee or margarita or similar.

And the DPSG is born.

DPSG?…..

Dead Parent Support Group

A bit morbid sounding, yes, but coined from our friend who lost her mom, who’s got an endearing sense of humor and dry wit about her; no need to sugar-coat this dead parent business.  And we do indeed need all the support we can get.

To be honest though, I always felt a bit like an un-official member of this little group, a bit of a fraud.  After all, as dear as she was to me and as close as I felt to her, I lost an in-law, not an actual parent.  But these friends (who become dearer with each random, completely-informal, grief-wading-through night out) certainly don’t make me feel any less of a full-fledged member because of it.

And that brings us back to tonight,  at our usual spot, over chips and guac and margaritas to talk grief and life and such.

But this time it’s different.

This time I’m talking about my dad.  My parent.  And terminal brain cancer.  And pretty grim treatment options.

This time I’m not the one offering up support.  I’m the one being supported.  Cause these two friends sitting here with me have both been through this cancer thing with the parents they’ve lost.  And I haven’t.

And it all seems so crazy, topsy-turvy, this turn of events.

And I’d be fine with just maintaining my un-official member status, please.  Maintain my role of supporter, rather than supportee.

Cause isn’t it always easier to be the one in the supporter role?

I can’t help but wonder, though, how soon I’ll be becoming a full-fledged member of this DPSG.

Not really a group anyone’s rallying to get into though.  Not a membership anyone would willingly have bestowed upon themselves.

But a group that I appreciate being a part of, all the same, whether it be un-officially or officially, due to the support of these two dear friends in this season, in a moment such as this.

 

Nana’s Notes:

Went to oncology this morning for radiation mapping and to see chemo doctor.  

Chemo doctor explained chemo treatment.  Not very encouraging.  Lots of fatigue and could decrease bone marrow & platelets.

We will start it next week & see how it goes.  Even one month of treatment could help.

When we returned to rehab this afternoon, we found out Papa’s diet was upgraded to a soft diet & thin liquids.  He was excited.

Had physical therapy session.

Kari & I discouraged about results of chemo consult.

 

Text: (from me to J’s step-mom)

Was impressed w/ dr.  She was very upfront about risks/life expectancy, etc.  Lots to think about, but most likely will proceed w/ treatment.

 

My Reflections:

Papa has another appointment at the cancer center where we previously met with the radiation doc (oncologist if we want to get all fancy and technical).  This time we’ll meet with the chemo oncologist and then Papa will have his skull mapped for where they’ll be administering radiation (they’ ll be targeting the area where his tumor was located in an effort to kill off any residual cancer cells and hold off tumor regrowth for as long as possible).

When we see the chemo doc today, her tune is far different than the radiation doc’s was during our last appointment here.  As she discusses the recommended chemo treatment, she doesn’t beat around the bush with the risks and side affects involved.  She doesn’t come across as a pessimist, but more as a realist.  She lets us know that considering Papa’s pre-existing heart condition, his age, and his current weakness, the chemo drugs will be hard on him, and he’ll be at a far greater risk for contracting other conditions that can result from the drugs weakening his immune system, especially PCP, a form of pneumonia.  They will give him other drugs to help counteract this risk, but she can’t guarantee his quality of life will be good or how much more life he’ll gain for putting him through the rigors of chemo.  As she speaks, the mood is sombre.  We sit there, trying to take it all in.  I blink back tears and ask my questions, Papa & Nana ask their’s, we try to understand all that’s involved.

As hard as it is to hear some of what the doctor is telling us, hearing how this treatment decision is far from easy or clear-cut, in a way it’s refreshing to be told the “real deal” with no sugar-coating involved.  I appreciate the doctor’s honesty, making us aware of what’s possibly to come.  She doesn’t speak these words coldly, but rather with sincere concern; we can visibly see the concern in her eyes as she speaks.  I truly believe she cares more about Papa as a person than him as a potential patient to add to her roster.

There’s lots to consider before decisions are made, but with our questions asked and the doctor’s info given, the doctor moves onto her next appointment and Papa is wheeled away by a nurse for his skull-mapping.  I say a quick goodbye to Nana in the hall before heading out to pick up the boys from a friends’.  There are tears in Nana’s eyes and this time she is the one who’s left shaken.  Up to this point she’s been the strong one, taking all this cancer business in stride.  While I’ve been researching and googling from the beginning, needing to know just how bad this anaplastic astrocytoma business can get, Nana’s chosen to take the one-day-at-a-time approach, not looking too far beyond the present.  I can’t blame her for that.  Yet now, after meeting with the most frank doctor we’ve met with thus far, I believe the brevity of Papa’s condition, his expected life-span, and the bleakness of treatment options are finally setting in.  It’s hard to to see Nana so rattled.  It’s hard to know what to say.  We’re standing there in a middle of a cancer center hallway and she needs to go with Papa and I need to pick up the boys, so we say our goodbyes and say we’ll discuss this all later.

So I depart, not quite sure what Papa will decide.  Not quite sure what I would do if it were me in Papa’s shoes.

It’s a lot to take in.