The Boxer

This is Patty Maloney, blogging for our warrior princess DonnaLee again.

DonnaLee hopes you all had a happy Thanksgiving. She said she doesn’t need to let you all know the importance of friends and family, as we are feeling it more than ever this season. She wanted me to convey that she can feel the love and prayers everyone is sending her way, and that she loves you all SO much.

DonnaLee had a wonderful Thanksgiving surprise, for which she is grateful - she got to go home from the hospital!

Though I don’t have a full report on DonnaLee’s health status, I do know her doctors are still fighting for her, trying to find out the cause of why the hemoglobin and platelets are breaking down instead of just treating the symptoms. In the hospital, she had felt scared and anxious the longer she was there. But DonnaLee is all in to keep fighting, especially since her doctors and friends and family are willing to continue to fight (and boy does she have a family of fighters on her side!). Does this surprise any of us who know DonnaLee so well and have seen her beat back cancer time and again?

Once at home on Thanksgiving, the “A team” - her daughter Taryn, and Taryn’s boyfriend Cody and dad Chris - got DonnaLee set up with a bed and nightstand on the ground floor, so she can navigate easier. Then DonnaLee’s cousin Lisa and Josh arrived from the west coast later that day. DonnaLee has had lots of company, which has made her a bit more tired than usual. So she asked you to please excuse any radio silences.

Coming up: lots of doctor appointments. DonnaLee’s a little anxious to find out how she’s been doing without the constant monitoring she had in the hospital. There may be decisions ahead that she doesn’t feel ready to make. Such as would she need to go back to the hospital (certainly hope not!)? Or does she need home care services?

Finally, a shout out to all the fellow warriors keeping her in the fight. DonnaLee says you know who you are and you have the battle scars to prove it.

Love and blessings to all!

Don’t Stop Believin’

This is DonnaLee’s friend Patty Maloney guest blogging for our warrior princess.

As you know, DonnaLee’s cancer has been progressing, and in the last week, she’s been facing new challenges. DonnaLee is in the hospital right now, dealing with multiple health issues, including a low platelet count that had caused uncontrolled bleeding in her mouth. Luckily, that is under control at the moment.

I visited DonnaLee earlier today, along with Mary Cox, and as usual, DonnaLee had a roomful of company - we joined her family in celebrating DonnaLee’s half birthday today! Her children Taryn, Emily and Ian were there, along with Ian’s wife Chelsea, Taryn’s boyfriend Cody and her dad Chris, and DonnaLee’s granddaughter Addison.

Despite being weaker, DonnaLee was in good spirits overall and at times optimistic. Does that surprise anyone who knows and loves our warrior princess? That quick wit and brilliant smile are still in full force.

Still, DonnaLee is also realistic. She is uncertain what the immediate future holds for her, or if she will even make it home from the hospital.

Now the hard part: DonnaLee wanted me to let each and everyone of you know how much she has appreciated your love and friendship over the years, and that she wishes she had more time to spend with us.

Most important, DonnaLee would like you to keep her family in your thoughts. As hard as this is for her, DonnaLee says it is even harder for them. I could see that myself today. Our warrior princess has never let cancer stand in the way of her commitment to living life to its fullest and being totally present for her family - and that has not changed.

I may be sharing more updates if DonnaLee asks me to. I know you all share in my hope that DonnaLee will be able to be in the comfort of her own home again soon.

And, please share your thoughts and messages of love and hope for her! DonnaLee isn’t up to the task right now of responding to all messages. But I know she will read each and every message, and the support will help to buoy her spirits.

Bitter Tears

It's been just about 3 weeks since I dropped the bombshell news about my disease and its difficult prognosis.  Has it been enough time for those I love and care about to process this news in a healthy way?  Has it been enough time for me?  What, really, comes next?

Initially, as expected, there was a flurry of calls, texts, emails, prayers, visits, assistance, travel plans, sharing the news (as I had asked), thoughts, opinions, and a wide range of emotions.  Some folks reaching out that I didn't expect to; others that have not reached out that I would have thought I'd hear from.  Most surprising of all to me?  How some of you were immediately pessimistic with respect to my unknown time left on this Earth, believing it to be days or at best, weeks.  How some seemed to feel that I was giving up the fight, that I wasn't doing everything possible to prolong my own life.  How some, upon seeing me, seemed surprised that I looked relatively normal (well, except for the obvious weight loss).  I was left wondering, 3 weeks later, if I'd made a mistake in not keeping this to myself.

Let's face it - the longer I stay alive, the more we all will revert back to our "regular" lives.  And while there is a part of me that welcomes that to a certain degree (it is hard to think of the disruptions to many of your lives already experienced in these past 3 weeks), there is another part of me that is bitter about it.  Because the little things that tell me I'm not going to be OK, that a miracle is not in the offing, that confirm my time here is truly quite limited continue to make themselves known.  The decreasing ability to walk, climb stairs, move without pain.  The swelling of my ankles.  The need for blood transfusions to address low hemoglobin results.  An inability to eat enough to gain desperately needed weight.  Episodes of shortness of breath.  Some of these issues are visible; others are not.  All are evidence that the march of the tumors continues. 

And while I think I'm doing a pretty good job of keeping it all together, focusing on each day as it comes, trying to remain optimistic about my chances for a bit of longevity, the fact of the matter is I am scared every day, and there are many, many moments of bitter tears when I not only ponder my inevitable fate, but also reflect on all the momentous events I will surely be missing out on.  I know I need to balance my desires for more time with beloved family and friends with everyone's need to get back to a normal life that understandably doesn't always include me.  But I admit - it is hard sometimes to put aside those selfish feelings, hard to fight back the frustrating tears when something doesn't go my way, hard to acknowledge that it isn't - it can't be - all about me.

Bitter tears aside - I recognize how fortunate I am to have all of you bearing the burden with me when I know it's not easy.  I see how so many of you have stepped up in unique ways to support me.  I appreciate that many of you have indulged my wants and needs, both large and small.  And most of all, I'm grateful for those of you who've had my back when I do get the occasional questioning of my decisions related to treatment and quality of life.  Yes - there's some bitter. But for sure plenty of sweet as well.

Blessings and Love to All.

Reelin' In The Years

You will not like this.  But you must read and you must know.

Chemotherapy is no longer working - it only creates potentially life-threatening side effects at this point.  Hormone therapies are no longer working - the tumors have figured out how to outsmart anything thrown at them to stop or slow the progression of my cancer.  I am not eligible for any clinical trials since my cancer remains in my bones only.  Other options (immunotherapies, etc.) have been considered and rejected as not likely to produce enough of a result to warrant the probable debilitating effects on my body, already besieged and glaringly deteriorated.  I am fighting with the few tools left available to me but I will soon lose this fight.

I don't know for sure, of course, what "soon" means but I do know that I no longer have years left and in all likelihood it comes down to months.  The doctors, they don't give you definitive prognoses, but they also do not dispute when I lay it out as above.

I've had a good run since initial diagnosis, reeling in more years than I ever would have expected and enjoying a quality of life (barring a few hiccups) many would envy.  I have no bucket list; I have no regrets; I have no last minute "wish list" items.  I don't want to talk about it; I've done enough of that over the past several weeks.  What I want, what I plan to do, is to wake up each day here on out thankful for the chance to breathe it all in until my chances run out.

I'm scared, not so much of the dying as I am of the leaving.  I am sad that I had to bring this burden onto my children, my family, my friends and yet I am comforted by their unwavering support as well as their commitment to enfold me in their arms, both figuratively and literally, and let me know "I've got you."

Is this my last post?  I don't know.  I kind of hope not.  But if it is...know that at least as of this writing I am happy and blessed and hoping that I have given you the best of me over the years.

Blessings and Love to All.

Alive

I am alive.  But am I living?

The challenges of the past six months, the ongoing difficulties of managing my pain, the uncertainty of the progression of my disease, the constant attention that must be paid to every aspect of my health, the multitude of adjustments and lifestyle changes I've had to make over the last 24 years (and the last 8 months in particular), it all makes me ask the obvious question:  When is it time to stop fighting so damn hard and to start really enjoying what time I have left?

Two ends of the spectrum here:  You fight until you have absolutely nothing left, embracing every medication/cancer trial/experimental drug/alternative treatment, gritting your teeth to capture every last second of life, a one-time-only gift you've been blessed with.  Or:  You focus on making sure that the time you have left is spent on that which is pleasurable and precious and enjoyable and important to you, even if it means giving up some months (or years) of that blessed life.

Quantity vs. quality - how do you know when it's time to trade the one for the other (assuming that you have, as I do, the longevity to actually be able to contemplate that trade off)? What's the tipping point?  What are the signs?  Where's the roadmap that tells you it's time to turn left?  When do you decide to stop believing in miracles?

Although the incidence of this happening has subsided as I've slowly gotten past some of the obstacles of the past 8 months, there are many times recently that I've walked around my house crying to God or I've called one of my loving and supportive friends or family members to ask why I'm being tortured like this; to demand to know why I'm not shown compassion by taking me now before pain and immobility and emaciation and joylessness overtake my body and my mind.  Is this my reward for fighting so hard to stay alive all these years - the dying, the downward spiral is made patently unbearable?  My family is made to watch me deteriorate, saddening them, forcing them to feel helpless to save me?  How is this considered to be living (or living well if you will)?  How is this (dare I say it) fair?

Fortunately, things do seem to be on the upswing for me - my arm has healed with good range of motion and no pain once radiation was completed; medications have been changed to address some ongoing pain issues in my hips and upper legs; weight loss has stabilized and hopefully I will put back on some needed pounds;  and restarted my chemotherapy regimen today to get some systemic relief from the tumors.  So confronting the questions posed above gets back-burnered, they lose a bit of urgency, they fade into the background.  Plans are made for the future and they include a steak dinner with favorite folks, a Mets game (yes, this Yankees fan is trading loyalties for the evening in order to spend time with family), a girls' trip to Savannah and an 80th birthday party in Seattle.

But they will come up again.  Someday.  So I ask you, faithful readers (and this is not a rhetorical question) - What do I do?  Do I stay alive?  Or do I live?  Don't disappoint - I'm counting on your feedback.

Blessings and Love to All.

It Don't Come Easy

It has been exactly one month since I broke my arm and I still find myself shaking my head in disbelief over the series of events that have taken place since then, the overwhelming gamut of emotions I've experienced (some for the very first time), the uncertainty that still exists regarding my overall health.  I confess, it's not easy to figure out where to start with this post there's so much swirling around up there in my noggin.  Which usually means I should start with the basics.

The arm:  As most of you know the surgery went well.  I am now the proud owner of a titanium rod and screws inside the wing, and its functionality is improving every day (hey, I'm actually typing 2 handed).  I don't yet have full range of motion, of course - it's only been a little more than a week since the surgery - but I have faith that I'll get there.  It doesn't hurt much, it's more like an ache, and there's a funny little hitch in the elbow that may or may not be permanent but for the most part I'm pleased with how things turned out.  My follow-up visit with the orthopedist is June 26th - we'll see then what my limitations are or will be and what PT I might have to undertake.

The kidneys:  In retrospect, I should have been more frightened of the hypercalcemia/renal failure than I was at the time.  My onc always says that bone metastases are not going to kill me, complications from them or their treatment are what will.  This is what he means.  But I just assumed that once I was admitted to the hospital, it would be taken care of and that would be that.  It didn't occur to me that had I waited a little longer, had I not contacted my onc, had they not been able to get me an appointment at the cancer center on that Friday, had I just chalked what I was feeling up to just another bad day (or days) that this could have gone horribly wrong.  It didn't - but it certainly has given me pause and an unwanted reminder of the difficulties of having MBC.

The cancer:  With all of the above, my chemotherapy treatments are on pause.  Again, the follow up visits with the orthopedist and my onc will determine when those start up again and of course, my fear is wondering what the hell those tumors are doing while I'm not attacking them.  I can only hope that progression (if any) is minimal and that I can go back to actively fighting them sooner rather than later.

The pain:  Fortunately (with one exception) I've been able to manage this fairly effectively using the same medications and protocol as before I hurt my arm.  What I haven't been able to get a handle on is the unusually intense pain in my right shoulder blade, a function both of having to lay exclusively on my back for so many weeks when I had the brace and also having to use my right arm so much to compensate for the limited use of my left during all this.  At times it is as though someone is taking a hot poker and very slowly inserting it into my shoulder blade, virtually debilitating me. It is without a doubt interfering with my recovery and while I know it will ultimately resolve itself, in the meantime it is cause for occasional distress on my part.

The mental aspect:  As expected, I've had my share of ups and downs throughout this, the downs quite frankly at times bordering on depression, a paralyzing joylessness that actually frightened me a bit.  I wouldn't say I'm back to being the happy warrior I usually am - but neither am I drowning in the sadness I had been feeling.  I suspect that while the "real me" will resurface, it will not come easy given all of the above.

With the basics out of the way, let me end this post by expressing my appreciation for the many, many of you who shared your support of me throughout all of this.  I couldn't even begin to do individual shout outs (I'd need to write a whole new post to do that!) - hopefully, as you've reached out to me, I've taken the time to personally thank you for keeping me on the path to recovery.

Blessings and Love To All.

Broken Wings

Finally ready to give an update on my broken little chicken wing.  It has not been an easy 2 weeks, mostly complicated by the fact that it took longer than I expected to see an orthopedist but...getting a little ahead of myself.  Back to the beginning.

After my 6 hour ordeal in the Emergency room (where Taryn and Cody stayed with me the whole time), I was sent home with a brace/sling stabilizing my left arm (thank goodness I'm a righty!) and a recommendation to call an oncological orthopedist, Dr. Fazel Khan.  While I wasn't in a great deal of physical pain, I did experience a great deal of psychic pain.  I had multiple nightmares reliving how I broke it, the sound of my arm snapping, the weird sensation of seeing my lower arm basically "flopping around" on its own, the waking up abruptly thinking someone was pulling on my broken arm and literally saying out loud "It's OK.  You're OK."  But I wasn't.  It took several days for the nightmares to go away and one or two after that to even attempt going down the stairs. That still terrifies me every time I do it.

Gradually over the last two weeks I've learned to become more self-sufficient, learning to do many things one-handed, as well as recognizing which things it's just not possible to do on my own (for instance, I can bathe and get dressed on my own but I need Taryn's help to wash and dry my hair).  My moods vary widely - there are some days I feel pretty close to normal, others where my only desire is to lay in bed all day sleeping.  I get frustrated at least once a day and I feel grateful at least once a day.

There was a delay in getting an appointment with Dr. Khan - his wife had a baby.  But I finally got to see him yesterday.  He explained the nature of my break - a spiral shaft break of the humerus (upper arm).  He revealed that the bone did show signs of spots that are likely tumors, hence the need for an oncological orthopedist.  And he presented me with two options: Option #1 - leave me in the brace for a couple of months, then take some x-rays to see if it's healing.  If it isn't we would likely move on to surgery.  This is what 90% of patients do with my type of break. Option # 2 - surgery.  Dr. Khan would insert a rod in my arm and (if it doesn't seem enough) to add some plates.  I'd be in the hospital overnight, in a sling for 1-2 weeks, and then pretty much have almost full functionality in my arm.

I hadn't really understood how much more beneficial surgery would be up until then - I had been hoping to avoid surgery.  But the prospect of a better outcome combined with a shorter recovery time convinced me surgery is the way to go.  So I'm set to go under the knife next Wednesday, June 6th.  I've had to stop chemotherapy as a result (need to boost my immune system) and a quicker recovery means I can get back on my regimen that much sooner.  After all, this IS just a broken arm; I have bigger problems that continue to need attention.

During this time, I've been overwhelmed by the support received on so many levels.  So a few shout outs (and I hope I don't forget anybody but if I do, know that I've been having a few memory issues).  So here we go:  Taryn, Cody, Bruce, Lisa, Bud (calling me from his hospital bed where he just had a heart valve replacement), Jodi, Kathy, Sarita, Emily, Addison,  Joe, Patty, Mary, Ian, Chelsea, Maz, Kent, Danny, and BP who has been so accommodating these past several weeks.  Thanks to all of you for the support given to me.

One of my more boring blog posts - guess I just needed to get the facts out there.  Expect one after my surgery that's a little more entertaining (I'm assuming I'll get some awesome pain meds that will make future posts exciting, and almost assuredly embellished).

Save some prayers for my nephew Kyle.  He's the son of my newly discovered sister Karen.  Kyle has just been diagnosed with a recurrence of a melanoma he initially survived three years ago.  He's only 26 years old, and has a lot of support from his family and his girlfriend, but could use all the prayers we can give.  He is young - he deserves a long, happy life that he will get not only through the care of his doctors but also through the power of our many prayers.

Blessings and Love to All.

Only Time Will Tell

Here's something I haven't done in a long time - written a post while in the chair receiving my chemo although truth be told I'm still receiving the pre-meds right now.  Chemo drugs to be infused within the next few minutes.  In total (with labs, pre-meds and chemo drugs) I'm in the chair about 3 hours.

I am on Cycle 2, Round 2.  I receive chemo on a Friday 2 weeks in a row, then 1 week off.  So this is the 4th time I'm in the chair.  Things generally seem to be going well, although not perfectly.  There was some drama during Cycle 1, Round 2 when they tried to give me Neulasta and I made a fuss.  Neulasta is a drug designed to bring up your white blood cell count, e.g. give my immune system a boost.  I had it last time I had this type of chemo with disastrous and debilitating side effects - intense and relentless bone pain that basically sidelined me for 2 days and caused me to weepingly beg God to TAKE ME NOW.  This time around I declined the Neulasta to the chagrin of my nurse, who had to get permission from my onc to NOT give it to me.  That did not make her happy, but of course my wonderful onc Dr. Cohen supported me on this one.  It's not even included in his orders today.

Now I know I'm taking a chance not having the Neulasta because of course my immune system is compromised.  But I am already dealing with so many other pain issues, not to mention how much time I've lost recently figuring out how to manage it that I'm not willing to give up any more "quality of life" time - especially since I'm quite conscientious about monitoring my temperature and diet in order to avoid infection in general.

I HAVE had to have a couple of blood transfusions because of my low red blood cell count, which helped in lessening the fatigue I feel after chemo.  So far, the chemo side effects have been minimal - a little more tired, some very minor queasiness, a few GI issues, some instances of "chemo brain," my sense of taste altered (again).  I have found myself craving things that I don't usually crave - fruit, apple juice, English muffins; and being somewhat disinterested in things that heretofore I absolutely LIVED for - Chicken McNuggets, why have you forsaken me??

As to my pain management, I am doing well with it although just starting to feel that I may in the near future need to up my dosage in order to continue to be pain-free.  It does, however, feel good to be able to walk my Rory in the morning without feeling like a withered old lady and to get in and out of the car while visiting my gas stations without feeling like I should have a walker in the trunk with my hard hat and safety vest.  Yes, I still have my limitations (for instance, I can't really run) but all in all I'm satisfied that I'm durable and reasonably energetic.  There is one interesting, unusual and unexpected effect of the chemo/pain med combination though.  Typically, when I take the pain medication I don't experience any loopiness or altered state of consciousness (although I did when first getting used to it - my friend Kathy called it the "one beer buzz").  However...when I take it during an infusion (I have a schedule of when I take it and try not to deviate much from that schedule) I end up experiencing what can only be called a "three beer buzz" or, as I described it to Kathy, "a substantial sense of well-being!"  

The nurses and volunteers in the Infusion Center are truly amazing - many I actually remember from when I got infusion treatments here 10 years ago.  As I once remarked to a nurse of mine from Our Lady of Mercy, I don't know how they come and do a job that breaks your heart every day.  For while I (currently) have a pretty good prognosis, so many here do not.  And yet, the nurses, they continue to show up day in and day out, full of smiles and compassion, expert care and good advice.  Nurses -  those past and present who've cared for me over the years - you will all always be MY heroes! (Note:  Nurses Week starts May 6th).

I've had a baseline CT Scan so that we can tell whether the chemo is working as we get a few months down the road.  The tumor markers have already declined slightly after Cycle 1 so feeling optimistic about that.  Only time will tell.

For your prayer lists:  my cousin Bud (getting over gall bladder surgery, getting ready for heart surgery this month); my cousin Sammy (who just can't seem to catch a break with his health); my friend Danny (soldiering on through his own health issues); and my boss's husband Randy, who just yesterday underwent the exact same jaw surgery that I did a little over 9 years ago - I know just how long and hard the recovery is and I pray he has it easier than I did, if that's possible.

Blessings and Love to All.

Back In the Saddle

It has become clear to me that I do not, in fact, know more than my oncologist about treating my disease and its multitude of symptoms.  While I've certainly learned a great deal over the last 24 years, I guess that doesn't make up for that whole "he's a doctor and I'm not" thing.

We had a plan for pain management - and I didn't follow it.  I didn't listen fully to what he recommended.  I decided it wasn't working and I stopped.  Now most of you know that is just not like me - usually I am a rule follower when it comes to my onc's instructions.  I can only say in my defense that the pain (clearly) made my decision-making unreliable, and that I'm fortunate that I have a doctor who is non-judgmental and compassionate even in the face of a rebellious patient.  I am a rebel no more!

After coming back from Norway (where I enjoyed the beautiful and inspiring mountains, the serene fjords and the wonderful company of Taryn, Mary and Cecelia but fought pain and fatigue most of the visit) I realized I was in an even worse state of unwellness, mostly due to my failure to believe in a solution to my pain and disease progression issues.  Daily "meltdowns" weren't helping my mental state either.  I made an appointment with the onc and truthfully - what a difference a week makes.

First - the pain issue.  After me crying and whining and basically being a big baby, my onc just smiled at me and said "I can fix this.  Let me fix this."  The way he said it, the confidence with which he said it, the surety he had that I didn't need to be in pain provided me with a calm I hadn't felt in quite a while. He laid out specifically what he wanted me to do, I have done it now for 5 days and...it is wonderful to not be in pain.  But it's more than that - it's not being in pain, and it's also not being so "loopy" that I can't work or live or enjoy a simple conversation.  The fears I had which prevented me from following directions the first time around are gone after only a few days.  I felt like I was losing all of who I was physically and mentally and it's nice to no longer feel that way.

Second - the disease issue.  The increasing pain was an indication both to my onc and to me that it was time to get back into "the chair," i.e. begin a course of traditional infusion chemotherapy in order to slow the progression and perhaps get some response (shrinkage) of current tumors.  So on Thursday I had a port placed in my chest (it's the safest way to infuse these very toxic drugs) and on Friday I had my first round of chemo.  Very little has changed since the last time I had this type of chemo (in 2008) - I spent about 3 hours in the chair and most of it was prep work (labs, pre-medication drugs, taking vitals, etc.) with the actual infusions of the 2 drugs (Navelbine and Carboplatin) taking about 45 minutes total.  I did what I usually do when I'm in the chair - did work on my laptop, ate my lunch and listened to my music.  So far, no side effects - not unexpected, as chemo is cumulative so the first few treatments should be fairly easy.  The protocol is 2 weeks on and 1 week off so time to recover at points.  To be continued...

Third - the jaw issue.  For now, the jaw will just have to be monitored as surgery is not an option while undergoing chemotherapy due to the compromised immune system.  I didn't feel I could wait for a surgery and recovery (which would have taken weeks, if not months) to start the chemotherapy.  For what it's worth - if the chemo is unsuccessful, then I wouldn't want to put myself through that kind of traumatic, invasive surgery anyhow and if it is successful... well then there's an opportunity later on to take a chemo break and do the surgery.  The jaw surgeon has me doing everything possible to avoid infection in the jaw so we will hope for the best.

My onc has me back in the saddle with respect to my physical rehabilitation.  With respect to my mental rehabilitation, there are quite a few of you who have played a part in that over the past few weeks.  Lisa, Bruce, Mary, Jodi, Kathy, Patty, Taryn, Sarita, Joe - y'all know what you've done in order to bring me back to hope, to optimism, to ME.  I am, as always, thankful for the angels in my life (yes, including Castiel haha).

Blessings and Love to All.

Unwell

I have been amazingly fortunate.  Over the past almost 24 years dealing with my cancer, I've experienced only a minimal impact on my overall quality of life.  And while there are many adjustments I've had to make along the way, I'd say that a majority of the time it's difficult for most people to tell that I'm even ill.  I'm a little spoiled that way, in that I've come to expect that cancer will not affect me until the time comes that it's ready to actually take me.  So all the little aches, pains and injuries I've been experiencing in the past 3 or so months (the balky knee, the arthritic hips, the tweaked back muscle, the shoulder sprain, the pulled groin muscle) I have chalked up to aging or being a bit out of shape or medication side effects.  A little Tylenol, a few heating pad sessions, an ice pack or two and I'll be good to go again.

Except...that is not true.  A very frank discussion with my onc this past Monday has forced me to finally confront what should have been obvious knowing what I know about my disease and most recent scan results but which I chose to ignore in vain hopes of it not being real.  I am unwell.  My disease has progressed to a point where quality of life is indeed affected and will continue to be affected into the future, no matter what treatments and remedies are undertaken.  All those little aches and pains are a direct result of the many tumors in my bones and they will not go away because the tumors will not go away.

I am in pain daily.  It hurts to walk and I cannot run.  I am losing weight (despite regular infusions of Chicken McNuggets) and muscle mass.  It hurts to lift anything more than a few pounds.  It is difficult to get a comfortable position sleeping and I wake frequently (reminding myself to "Move slowly!" as I shift from side to side).  I am losing the energy I've always been so grateful to have - I sleep more, nap more, stay sedentary more.  I am in pain daily.

When my onc began the discussion this past visit on the necessity of proper pain management is, I think, when the veil of denial was finally ripped off my eyes (hey - at least he didn't give me the old "it's time to get your affairs in order" speech!").  Moving towards pain management - it MEANS something.  I may not yet be terminal, but I AM progressing in that direction, and now I feel it.  I feel it in my body and I feel it in my head and I feel it in my heart.  How incredibly sad that makes me.  I'm the hero, I'm the inspiration, I'm the fighter, I'm the badass saint, I'm Wonder Woman dammit!!  This can't be my next chapter.  I weep for me.

And so...I wallow a bit with this newfound epiphany, that I am unwell.  I get angry. I cry.  I process.  I walk the dog, painfully but with the joy of breathing in fresh, clean air.  I talk to some of my squad (Lisa, Jodi, Kathy - you guys always bring me out of my own head. I love you for that).  I bargain with God.  Again.  I meditate.  I worry - about my children, about my ability to work, about what the future holds.  I breathe and I breathe and I breathe some more.

And then I do what I do best.  I make a plan.  I'll meet with another jaw surgeon to figure out the next step there (yep, still got that hole in my face).  I'll have a port put in so I can move on to more aggressive chemotherapy in hopes of holding back the devil inside just a little longer.  I'm told the drug we're going to use is very tolerable (e.g. no hair loss or nausea) if infused weekly and we may do a "2 weeks on, 1 week off" protocol to preserve that oh-so-meaningful quality of life.  And we're upping my game with respect to pain management with a stronger drug and more frequent usage.  I will have to make more adjustments in my life but hey, I've been doing that for 24 years and while I am oh-so-tired the fact is...there's no other option here.  Never, never give up.

That goes for any of you who are also unwell.  I'm thinking of you Bud, Mike, cousin Sammy, Lena, Catherine, even little Leanne who toughed out a tonsillectomy recently. Keep on keeping on all of you - it's hard, I know, but worth the fight.

I just returned from a great trip to Phoenix that included a road trip to California with my "ride or die" Lisa - there's no one I'd rather sing Led Zeppelin at the top of my lungs with than you!  Many thanks to our patron "Dan the Man" for his wonderful hospitality.  Family time with Mike, Nik, Robin and Jarrod in CA made the whole adventure quite joyful (although let me assure you it DOES rain in Southern California).  Next up - Norway!  In 2 weeks, Taryn and I will join Mary and Cecelia on a little mothers-daughters quest to beautiful fjords and quaint Scandinavian villages.  Maybe this time we get to see the Northern Lights??

Blessings and Love to All.

It's Never Too Late

I have come to expect curveballs when it comes to my health.  Curveballs in my personal life?  I admit it - I did not see the events of this past week coming.

Most of you are familiar with my general life story, but for those of you lacking in some of the details here is the heavily abridged version:  My mother and biological father (Joe Rosenthal, hereinafter referred to as bio-dad) married at age 18 when she became pregnant with me.  The marriage only lasted a few years (long enough for my sister Bonnie to be born) and they divorced when I was around 4 or so.  The last time I saw my bio-dad was when I was about 6 and I have had no contact with him for the last 52 years.  While I was fortunate to have Ken as my Dad for many years, there was of course always a bit of curiosity about my bio-dad:  Did he re-marry?  Do I have siblings?  Is he alive?

A communication on Messenger last Saturday answered those questions.  It was from Joe Rosenthal Jr., who I soon came to learn is the son of my bio-dad.  He notified me of the death of Joe Sr. in January and gave me a few details of his search to find Bonnie and me.  It is not a message I EVER expected to get and I confess I was quite unsure as to how to respond.  I knew I WOULD respond - I just needed to process and figure out HOW.  It was clear from Joe's message that he had concerns about contacting me, mostly because he'd read my blog, knew my story and had no desire to cause me distress or unleash a burden on me.  But...I have another brother.  How could I not respond?

Since that time, we've exchanged a few messages and emails and spoken on the phone, sharing stories of our past and our present.  He let me know that I also have a sister, Karen (who may or may not be interested in establishing contact with me), some nieces and nephews, and a first cousin (Sherry Lee) he'd recently reconnected with and with whom I'm just starting to get to know as well.  I shared Bonnie's backstory (he knew she'd died) and what little I knew of my bio-dad.  We've compared our lives, our personalities, our interests - not quite fully yet, but in the bits and pieces that brief emails and phone calls will allow.

There is not a lot I feel about my bio-dad.  He's a man I did not know and while I am sorry for Joe and Karen's loss I am relatively neutral with regards to him.  What has struck me the most is how much Bonnie seemed to be like him, at least based on what Joe has told me.  It makes me sad that she is not here - I believe she would have loved knowing she had another brother and sister.

Reactions from family and friends with whom I've shared this information have varied from ecstatic to skeptical to amusing ("Meh - he probably just needs a kidney") and convey an overall wish for this to be a happy thing for me.

I can safely say that it is.  Bottom-line is I LIKE my "brother from another mother."  I want to spend more time getting to know him and his family and vice versa.  I expect that at a certain point in the near future we'll have an opportunity to get together and learn even more about each other.  He seems to want the same thing.  So...moving forward because it's never too late to add good people to your life.

I mean, c'mon...how could I not like a guy who's into Echo and the Bunnymen, one of my favorite 80's new wave bands?

Blessings and Love to All.

Weird Science

This week I received even further confirmation that my body is a weirder-land.  Throwing curveballs at my jaw surgeon AND my oncologist, we are all left shaking our heads at what it has taken and will take to keep this body in a usable state.

There's a lot to cover here - and I'll try to be as clear and concise as possible.  First things first - there is a hole in my face!  More specifically, the jaw repair surgery that I had in July has not completely solved the problem (something I knew was a risk) of the exposed hardware.  There is more internal deterioration, leading to an open lesion under my chin that needs to be addressed.  How we do that remains to be determined and starts with a CT scan of my jaw this Monday.

On to my onc visit yesterday.  A couple of weeks I ago I had a bone biopsy done because my last set of scans showed some disease progression and the concern was that the pathology had changed over the years.  And if that turned out to be the case, it might change our approach to treatment.  As it turns out - it did change.  But not in an expected way, with some markers changing and others staying the same and one marker resulting in my onc saying he had NEVER seen a result like the one for this particular marker (and calling it just weird.).  Curveball! Combined with the odd results of the December scans, it made for some interesting discussion for the rest of the visit.

So what does all this mean?  Well, several things.  First of all, the biopsy sample will be sent out for more detailed testing.  The unusual biopsy and mixed scan results indicate that my current medication works on some of the tumors but not all of them so we've got to zero in on something that will attack the disease on a more systemic level.  In all likelihood, it will mean going back to "traditional" chemotherapies vs. targeted chemotherapies (which is what I've been on for the past 7 years) - we're talking a port insertion, weekly (or bi-weekly) infusions that take several hours, hair loss, bouts of nausea, fatigue, "chemo head" etc.  I've done this before, I know I can tough it out and still enjoy a reasonable quality of life but gotta say - not looking forward to it.  On the upside - my onc is in no rush to get there, emphasizing again that this is not an emergency situation with respect to changing medications.  In fact, I'm actually "too healthy" for a clinical trial that my onc was hoping to get me into.  Go figure.

Second of all, there is one tumor that needs some attention, a spinal one (L1).  It's not large and it isn't causing me pain but the scans show some cortical destruction so it may need to be radiated to prevent any potential spinal instability.  My onc will consult with a spinal specialist and let me know but it would be the same stereotactic radiosurgery that I had on the shoulder, hip, spine and rib tumors over the last year.

Third of all - circle back to the jaw issue.  If surgery is required (and unfortunately, depending on what the CT scan says this could mean another complete jaw reconstruction, the prospect of which absolutely terrifies me) it would have to be done before any infusion chemotherapy is started because my immune system would not be able to handle it once on the chemo.  So - weird situation with respect to timing here.

Despite all of this uncertainty, I'm not nearly as anxious or worried or dispirited as I would have expected.  Perhaps it's because overall I feel pretty good physically; perhaps it's because I have a lot to look forward to in the next couple of months (taking all my girls to see Aladdin; trips to Phoenix, Norway and Croatia/Italy; my 59th birthday); perhaps because I realize that, at least for now, I still have it better off than many; perhaps because I've learned not to worry before there is something to worry about.

Stay tuned - you'll find this story has many more chapters in it.

Blessings and Love to All.