Update on Hannah

It's been a while since I've updated my Dear Readers on Ms. Hannah and her progress.

To briefly skim her story:

Hannah was diagnosed with osteosarcoma that involved an area just below her knee.  The standard treatment is chemotherapy, radiation, and amputation.  Hannah made the courageous decision to go with another option that is slowly gaining in popularity, despite its seemingly radical nature.
She opted to have a rotationplasty, in which the cancerous area is, indeed, amputated, but the foot is reattached, backward, essentially to the knee.  It's much more complicated than that but what it allows is for the later fitting of some awesome prosthetics that permit people to remain very athletic and active.

She had the chemo and radiation.  She had the radical surgery.  She worked like a true champ in Physical Therapy and was doing very well.

Do you know what one of the side effects of the chemotherapy is?  One of the leukemias.  And yes, Hannah has developed leukemia.  She also was found to have a nodule in her lung that was a spread of the original osteosarcoma.

So she has had to change horses midstream, as they say.  She is now undergoing the preparatory chemotherapy to set the stage for a bone marrow transplant -- a European man is a perfect match, "except" for a few compatibility issues in typing.  I know, I know... so he's not a perfect match.  Near perfect!

At the moment, while her counts are down so low, she's been hit with some viruses, precisely at the time when she has NO immune system with which to fight back.  Her Mom is feeling low, too, because she thinks that she is now catching a cold, which means she cannot be a bedside cheerleader until she's well.

So... give a thought to Hannah tonight, and her family, particularly her Mom.

She is one plucky kid, and she is my hero.  When I get all slobbery pitiful about missing a shoulder and not being able to move a leg... I think of this girl in her heroic "crane" pose, in her quest to get back on the soccer field, and in the pool, and I read about her doing the very hard PT work without a word of complaint... and am so humbled.

From Caringbridge:

FEBRUARY 7:  Please forgive my tardiness in updating you all on how our Hannah is doing. It has definitely been a crazy week since she got her new diagnosis last Wednesday.

Hannah is still recovering from lung surgery. As of today they still are NOT going to remove her chest tube. There is a bubble in there and it has to be gone before they can take it out. First prayer is that the bubble goes away and she can get that tube out. It is terribly uncomfortable and painful for her when she moves around.

As soon as she is cleared from her surgeon, she will go straight to the 9th floor to begin chemotherapy treatments for her AML (Acute Myeloid Leukemia). She will be in the hospital anywhere from 4-6 weeks straight depending on how fast her numbers go back up after treatment. She cannot leave the hospital until her numbers are cleared...then after a couple of days at home, she will go back in for another round of chemo with the same parameters. After that she will have to have a bone marrow transplant. This is as far as we know for her treatment. Once she's past the transplant, we will see where we are going from there to get her in remission.

As for the tumor they took out on Monday, it was confirmed as Osteosarcoma. While we are all disappointed that it recurred so quickly (only 2 months), the good news is they did get all of the tumor and because the margin around the tumor was healthy cells, we know they got all of it. That means, at this point, there are no plans to put her through treatments for Osteosarcoma. We are so grateful for this "silver lining" in our very dark cloud.

We are so grateful for all of the prayers and positive thoughts coming our way. Hannah is in wonderful spirits, as always, and is ready to fight this monster called cancer. I will update you when I know more.

APRIL 19:  Just had another big informational meeting about Hannah's bone marrow transplant at St. Louis Children's Hospital. We know that Hannah's donor is a man from Europe and that he is a perfect match based on the criteria however there are a few things that could be a potential problem. It's a lot of medical terms so rather than go into a long explanation I'll just say she will have a heightened risk for GVHD (graft vs host disease) as well as CMV. His blood type is A+ and Hannah's is O+ so initially there could be issue despite them taking out the red blood cells. There are also lots of meds she's going to take for prep for the actual transplant. Also they pushed back her transplant date to June 12. Sooo many hurdles yet to jump. Please pray everything goes as planned with no rejection or problems. I feel so overwhelmed with all of this...soooooo overwhelmed! :'(

TONIGHT:  Hannah's still feeling rotten. Her ANC is back down to 0, but that's to be expected. These viruses (rotovirus is one of them) are kicking her tail. Still coughing and runny nose. Had to have 2 units of blood today b/c her hemoglobin was WAYYY low. Had platelets yesterday. She's really getting frustrated and down about it all... she told me today "I just want to be done!" Translation: Ive had enough of hospitals and medicine and doctors and all of this. She and I had a bit of a cry together, which I think helped her. Another hurdle for me (I know I never post about myself so please forgive me) is I feel myself getting sick too. If I'm sick, I can't be on the floor, meaning I can't be with Hannah. This is all so overwhelming! I can't be sick! My Hannah needs me! :'( 





Uploaded to YouTube by mayoclinic on Sep 3, 2010:  "This is a pre-surgical video which describes rotationplasty, who the procedure is appropriate for and possible complications. This video depicts the process of being fitted for a prosthesis and learning to use it. The patient describes her active and satisfying life after rotationplasty, her emotions and the process of adjusting to living with a prosthesis."

UPDATED: Hell's Bells: Pray for Hannah

all previous "Hannah" posts can be found HERE.

UPDATE 2/2/2013:  From Hannah's Mom:

We had a meeting yesterday with Hannah's oncologist. In addition to the Leukemia, they found a nodule in her right lung. They believe the Osteosarcoma is back. It looks like she now has 2 types of cancer she has to fight. Hannah will have another Thoracotomy Monday morning to remove the nodule. It will be biopsied to confirm it is Osteosarcoma. We are devastated to say the least. Once she has healed from surgery, they will begin chemo for the Leukemia (AML). We have a very long and terribly difficult road ahead of us. Hannah is in very good spirits and is doing quite well under the circumstances. Please continue prayers for all of us. 

**********          **********          **********          **********          **********

I love this confident face...

Aw, hell's bells.

This breaks my heart.

Hannah, my hero, the little girl who had the rotationplasty last year following discovery of osteosarcoma in her leg, now has leukemia.  Her mother just posted this plea, which I pass along to you, as I remind myself that even heroes need loving support:

Worst nightmare confirmed. They found Leukemia in Hannah's biopsy. On our way to St. Louis Children's Hospital now. Pleeeease pray! :'( 

In case you've forgotten Hannah's heroism, it comes not so much from being stricken with cancer, that happens... It comes from choosing to treat her particular form with a fairly new and radical surgical option, the rotationplasty.  Here's a great video from the Mayo Clinic about the surgery:

Uploaded on Sep 3, 2010
This is a pre-surgical video which describes rotationplasty, who the procedure is appropriate for and possible complications. This video depicts the process of being fitted for a prosthesis and learning to use it. The patient describes her active and satisfying life after rotationplasty, her emotions and the process of adjusting to living with a prosthesis.

Here is my favorite photo of Ms. Hannah, My Hero, as The Crane:

From Prayers for Hannah

There shouldn't be profanity there where Ms. Hannah is... but you'll excuse me this:
DAMN CANCER.


addendum:  some fast reading and reminding allow me to share that the only thing that heralded the development of the leukemia was a sudden bad rash over her upper body, for which they went to the logical healer, the dermatologist.  it was his biopsy that led to this second cancer diagnosis.  apparently, one of the curses of chemotherapy for osteosarcoma is that it puts the patient at risk for... leukemia.  now that is one sucky, sucky side effect.

Hannah Stars on the Today Show

I haven't written in a while about Little Miss Hannah, My Hero.  She is someone I think of on mornings like this one, when the whole night was spent in spasm, and Buddy ate one of the cables to the DVR.  Of course, normally, I'd comfort myself with music from my well-loaded, super-soothing mp3 player... but Buddy ate the last of my earbuds a few days ago.  It's not fair to Fred to then blast music on the CD player on my bedside table... although, right now, I could probably get away with it, because... Well, remember that ear infection Fred had a few months back?  It has returned, such that he has completely lost hearing in his left ear and perceives things in a distorted fashion out of his right side.  So I figure that blaring Pink Floyd won't endear me -- any more than I am already endeared -- to the belovèd Fredster.

No, I am NOT weeping... that's just the state of my right eyeball!

Yeah, so when things are this fun around here -- and did I mention that Fred the Chef made himself a burger bonanza at about 2 am?  And that he doesn't understand the concept of GREASE, or of those lovely little things I purchased that fit nicely over any frying element to prevent GREASE from covering, say, your girl's cute little bright red enamel kettle?  The damn thing practically slipped out of my hands when I picked it up to get coffee started.  Umm, where was I?

Oh, right!

Hannah has had *real* troubles.  Not the kind that go away with a little elbow grease and some electrical tape.  Not the kind that can be overcome by the application of bad wit and an even worse attitude.

I know this is weird, but I have admired and loved Hannah since someone first referred me to her CaringBridge site sometime last year.  At that time, she had been diagnosed with a pretty straightforward osteosarcoma in her leg.  That sounds simple enough, doesn't it -- "she had been diagnosed with a pretty straightforward osteosarcoma in her leg."

Well, for an athletic, sensitive, active, highly intelligent young lady, that had to be devastating.  But she soldiered on... and I admit that kind of worried me, as I do know something about the dangers -- the future emotional dangers -- for kids who just soldier on through hard times.  I had a somewhat dysfunctional father who harangued into my thick head that I was to take any troubling issue and put it in a box (said box residing inside the aforementioned thick head), and "never, ever open it again."

THAT'S the healthy way of addressing problems!  Might that be behind my tendency to sleep for a week when confronted with some badass issue?  I know -- get over it!  Well, like everyone, it does sometimes feel like I've spent my entire freaking life getting over the emotional dysfunction gifted to me by the Parental-Units... and I'm also highly cognizant of the fact that I am wayyyy past "grown," and responsible for myself and my actions/reactions.

So I still spend time looking for people from whom to learn, for people who seem to have it together, for people whose natural inclinations, good upraising, and excellent natures guide them in the right way.  The Tao, I'd have said at one time.

Such is Hannah.  She and her family studied the various surgical options for her osteosarcoma -- the one sure thing is that these tumors must come out, and removing tumor from bone almost always involves hugely traumatic, life-changing surgeries, mostly amputations.  In recent years, though, another very creative option has gained in popularity, especially for children.  It allows them to be fitted, once healing has been accomplished, with state-of-the-art prostheses that permit continued participation in sports, and, really, given the optimism and brilliance of kids -- participation in anything.  It is a procedure called a rotationplasty.  If you go back and read some of the initial posts on this blog about My Hero Hannah, you'll find better explanations and a video that her mom recommended.

I will be honest.  It turned my stomach when I first read about it.  I cried.  Then I watched that video and others, and thought about the many heroes I met during my brief stint at the Shepherd Center, and the bravery of people who are not willing to cave in to circumstances, who are claiming a normal life, and know to do so at very tender ages.  And I straightened up.  To rehabilitate my Dad's bad advice mentioned above, he also hammered into my head that I should "straighten up and fly right."

What can I say?  The man was a career officer in the United States Air Force.

Ah, but Hannah's road did not get easier, even after the rotationplasty and the process of rehab and fitting prostheses.  In one of the saddest twists that I've ever heard of, one of the side effects of the chemotherapy she underwent for the osteosarcoma is... leukemia.

In a double, triple (it's hard to keep count) whammy, she developed leukemia, and they also discovered nodules in her lung that were metastatic cancers from the original tumor in her leg.  So brave Hannah now had to defeat cancer again, and ultimately required a bone marrow transplant, which she just recently completed.  To be honest, the reason I've not written about her for a while is that, although the initial signs are that the transplant has gone wonderfully and has grafted completely with her immune system... I've been feeling like a jinx.

But I'm over that.  It's time to celebrate Hannah;  it's time for Hannah to do all her grieving and processing, healing and living.  It's time to take that deep, cleansing breath.

So her mom has been very excited about Hannah having been chosen to be featured in this Today Show segment.  It got bumped a few times, but finally aired today.  She looks beautiful and radiant to me, after having seen nothing but pictures of her during the worst of times.  She faces many a challenge, the first being to process all that happened to her with such rapidity, the next being the many daily obstacles requiring adjustments (pieces of cake, I'll wager, though irritating as all get out), and then that future road, of which none of us can ever be sure.

But there is no one better prepared, no one with better support, and no one more heroic.*

*Nota bene:  I DESPISE the concept of the "exceptional" sufferer, be it a patient with a physical illness or challenge, be it someone mired in the worst of the universe's circumstances.  There is no requirement, that I am aware of, that people must do exceptional things, all the while smiling and encouraging others.  I am more comfortable around someone who throws the occasional fit and curses God, figuring, I suppose, that these are the people who really are in relationship with God.  So if Hannah were ever to pout, act like a brat, regret what she feels she's missed... that sounds perfectly normal and fine.  It's just that she is not going to ever be STUCK there...  It's not in her nature.  If I've envy, well, that's where it lies.

So here she is, star of the morning news shows!

Visit NBCNews.com for breaking news, world news, and news about the economy

© 2013 L. Ryan

My Hero Hannah Needs Your Help

Please excuse this unusually terse entry -- more on that in the next terse post -- but time is of the essence!

[If you don't recall Hannah, click on her bolded, underlined, and capitalized name just below this, my favorite photo of her, called "Hannah's Crane."]

HANNAH is my hero because:

• she faced osteosarcoma like a mentally seasoned champion, not a young, untested girly-girl
• with her family, she chose a relatively new option for the surgical removal of the tumor in her leg -- rotationplasty
• she faced recovery and rehab from the rotationplasty with courage and a grand work ethic
• part of the therapy for osteosarcoma, as for most cancers, involved radiation and chemotherapy, and these things, too, she struggled through with beautiful style (as beautiful as one can be whilst throwing up)
• just when all seemed well, hannah developed one of the side effects of her chemotherapy -- leukemia (and if that isn't a kick in the stomach, what is?)
• as if that were not enough, the osteosarcoma reared its ugly head again, traveling to her lung, and she underwent surgery to remove that cancerous nodule.
• she undertook this challenge as she did all the others, in beauty and ferocity
• but still, she needed a bone marrow transplant to defeat the leukemia, a truly arduous and scary procedure
• now post-transplant, she and her family live with the fear of rejection syndrome and further spread of the osteosarcoma, so every symptom that you or i might consider trivial, they must treat as potentially life-threatening and make a run to the doctor or ER...
• and they do all these things with grace, humor, and the requisite NEGU attitude (Never Ever Give Up)

I think you get the gist of it, yes?  She is doing well but the struggle is not over, and while she became my hero when I read about her choice of the rotationplasty at the beginning of her journey, I imagine that as she grows, in emotional and physical age, that choice will provide her with some challenges as well as its many benefits.  But that's ME talking and projecting my weaknesses onto Hannah.  Excuse me!

Her mom posted this request today and I hope as many of my bazillion readers as can will place an order to help them out with the medical bills and the bills of daily living that have had to be pushed aside for two years.  Shoot, I will project one of my major pet peeves onto the Smith family: parking fees! Never mind the cost of all the traveling they've had to do for treatment, just think of the darned parking fees at all those hospitals, doctors' offices, and "medical buildings."  I may hold a fundraiser for myself one day, just for parking fees...

Oops.  Train of thought, off the tracks once again.

Here is Hannah's Mom's message:

12-16-13

1 hour ago

Hannah has designed a T-shirt that is on her favorite color. It is a fundraiser and we need your help. You only have until Thursday to pre-order. $15 each and will be shipped 2 weeks after the end of the last order date. Our goal is 150 shirts but we only have 89 ordered so far. Can you help? Here's the link:

https://www.booster.com/hannahsmith?share=6511387163898591

Thank you for your help! 

© 2013 L. Ryan

Something to consider, Dear Readers

No offense to my "cancer kids," but if you all would puh-leeze stop dying and relapsing, I'd appreciate it.  Just kidding, young ones, there's a whole host of you who've graduated from "The List of Four" and are now in college, back in fourth grade, on the swim team, and just generally kicking cancer's booty.

Miss Hannah, looking like she might wanna chew glass... but lovely and colorful, as usual! 

I want to talk to my Dear Readers about Miss Hannah -- yes, my hero.  If you've been following my logical and well laid out presentation of her story, you know that she recently suffered a relapse of osteosarcoma, with spread to her lung.  The good news is that a (relatively) simple surgery may have caught it early in the form of a nodule with clean edges.  So, that's worth a "yay!" -- just don't scare your co-workers with too loud a scream of joy.

The down side of chemo for osteosarcoma is the "side effect" of leukemia, which Hannah now has, as well.  That's worth a scream of another sort, and you probably should wait until you've some privacy before letting loose.

But you know me!  I'm not one to wallow in self-pity, oh no!  And in this case, since I am not the one battling two cancers at once, why should I?  Sorry, I got confused there for a moment, or a decade...

So here is the deal. Be a bone marrow donor, because that's what Hannah is now working toward.  It's an arduous process, and she is, of course, taking things zen-like, as they come.  But her transplant coordinators and family can't afford the luxury of laying around doing chemotherapy, relaxing in that comfy hospital bed, and chowing down on jello.

This is the latest post from Hannah's mom, shared at her CaringBridge site:

Today starts week 2 of this 4-6 week stay. She has 3 more days of chemo (including today) and then we wait for her counts to come back up before they let us go home for a few days. 

Today I spoke with the head nurse for Dr B...my other kids were tested to see if they are a match for donating bone marrow to Hannah. We got results...NONE of my other kids are a match for Hannah. The nurse said "they didn't even come CLOSE to being a match". *sigh* Soooo...plan B. They've already started the registry search. Because so many of you have offered to be a bone marrow donor for Hannah, we are in the process of putting together a donor drive. I will let you know when I have details. 

Thank you for keeping us uplifted in thoughts and prayers. 

From the National Marrow Donor Program, here are some frequently asked questions, with answers!  

Matching a patient

• How is a bone marrow match determined?  
• How likely is it that I will match a patient?  
• What happens if I match a patient?  

Deciding to donate

• Can I change my mind? 
• How are bone marrow and peripheral blood stem cell (PBSC) donation different? 
• How will I know if I'm asked to donate bone marrow or PBSC? 
• Who pays for the donation? 
• How long does donating take? 
• What if I have medical complications related to the donation?  

Donating bone marrow

• What is the bone marrow donation process like? 
• Does donating bone marrow hurt? Are there side effects? 
• Are there risks to bone marrow donation? 
• Will donating bone marrow make me weak? 
• Where is the bone marrow donation done? 

Donating PBSC

• What is PBSC donation? 
• Why is PBSC donation considered investigational? 
• What is the PBSC donation process like? 
• Does donating PBSC hurt? Are there side effects? 
• Are there risks to PBSC donation? 
• Where is the PBSC donation done? 

Learning about the patient

• Will I get patient updates or meet my recipient? 
• What is the risk to the transplant recipient? 

Hannah Prepares to Kick Cancer's Booty

A note from Hannah's mom was posted on Caringbridge today:

And so we begin the 3rd chapter in kicking Leukemia's tail. Hannah was admitted last night and already had her anti-seizure meds to counteract the chemo. This morning started HEAVY chemo. Her immune system will be killed off over the next 10 days. BMT [bone marrow transplant] infusion will be on the 26th. We are all ready to get this behind us! 

Go, Hannah, Go!

Four Days Post Rotationplasty: Go, Hannah, Go!

Hannah's Mom updated her progress again today.  From home! My admiration grows with every communication detailing this young girl's courageous journey.  I've copied below the section that I find most inspiring, as it details some of the intricacies of adjusting after rotationplasty -- an orthopedic surgery I'd never heard of before being referred to Hannah's CaringBridge Journal.

[In case you were wondering how I "pick" the four kids I follow, I don't -- not in over two years, anyway.  I wait for the day when one child's journal entry asks for intercessory prayer on behalf of another child.  I'm all about referentiality, "degrees of separation."]

If you decide to follow Hannah, please be a faithful cheerleader.  In the days and years ahead, there are going to be some rough times of inertia to offset the many good times of clear and positive progress. But be real... I think this kid is equipped, not just with a "new" leg, but with all kinds of radar!

This amazing child, only 4 days past her rotationplasty, was able to leave the hospital and go home. Now that her body has changed so dramatically, we are all in a bit of a learning curve as to how to navigate the logistics of everyday "normal" life. I will never again take getting in and out of a chair for granted. The amazing thing is that this girl is able to get in and out of her wheelchair on her own, with only the help of another person to balance her. I've taken a few videos that I'm going to try to upload to YouTube so you can see just how determined and strong she is. The only physical difficulties she is facing at this point is the splint on her "new" leg-which must stay on at least 2 weeks-maybe longer. She's wrapped from her rotated foot all the way up to around her hip and waist. That makes navigation challenging at best. Also, the thigh muscles are having to be retrained b/c they aren't really thigh muscles--they're actually calf muscles. We're having to train them to go in the opposite direction than normal. This is a challenging and painful process but she's doing exercises to help with this. Once the splint is off, she'll then have to train her ankle muscles to go the opposite direction as well. 

Childhood Cancer, Humble Heroes

Dear Reader, use your influence in the universe, in God's World, with whomever you house in your Pantheon, on behalf of 7-year-old Derek.

I am following the journey of four children with cancer, something that began with Layla Grace, who lost her battle before the desperate hearts of many bloggers and tweeters, as her parents shared her with us, selflessly.  In so doing, they managed to explode a good many preconceptions while reinforcing some comforting old truths.

Layla and her Dad 

I've posted regularly about Kate McRae -- who is entering a new and unknown phase after receiving unexpected and delightful good news.  All while being glad and learning to cherish a new normal, her parents are having to contemplate possibly stopping a good portion of her therapy.  Mom Holly has left an incredible journal of faith, anguish, and celebration at CaringBridge.  Yesterday, she wrote:

Our options are few... taking her off treatment all together and watching to see if tumors that have had time to grow resistant to the treatments grow. Or to find a new treatment. She is currently not eligible for any medical studies, as there has to be measurable disease on a brain scan, a reason for which I am entirely grateful she doesn't qualify. This leaves us to choose from less than ideal treatments, or foregoing treatment. Both with their own unique troubles.

Derek was in Florida, vacationing before travelling to Boston for a new treatment necessitated by a vicious return of his cancer, and began to have unmanageable pain.  Home again, a morphine drip eventually made him comfortable.  His trip was scheduled for yesterday, but Derek had a "massive seizure," and plans were changed.  He and his family are feeling the sudden shift from pursuit of a cure to palliative care.

The word 12 hours ago was that Derek is "resting comfortably" in the hospital, where he stayed overnight as a precaution.

He's a plucky boy, very bright, blessed with a family of depth, humor, and heart.  I've marveled at him and all of them many times;  I've tried to learn what they have to teach, as they smile through the tears.

This Friday, Hannah, who has osteosarcoma, will have a major, life-changing surgery called rotationplasty.  I will be honest:  Even knowing that this decision was made by wise people who love and are invested in Hannah, hearing about this radical surgery coincided with some preexistent nausea and I lost it.  Since then, respect for her bravery and for her desire to live life after cancer in as unrestricted a manner as possible has replaced my initial wimpy somatic reaction. Hannah's Mom has recommended this video for folks to learn about rotationplasty:


Uploaded to YouTube by mayoclinic on Sep 3, 2010:  "This is a pre-surgical video which describes rotationplasty, who the procedure is appropriate for and possible complications. This video depicts the process of being fitted for a prosthesis and learning to use it. The patient describes her active and satisfying life after rotationplasty, her emotions and the process of adjusting to living with a prosthesis."

The fourth child I follow is a complicated Little Man.  His situation is complicated by the complicated socioeconomic factors at play within his family. It's all so... complicated.

More than any other child I've followed, this kid has been subjected to medication and treatment side effects that out-demonize even cancer.  I've come to love his Mom, and her pluck, her persistence in the face of All That Is Unfair.  I've come to understand him, knowing something of life on constant steroids, understanding how the face in the mirror came to be that of a stranger.

So these are the four young ones that I "follow." I don't stalk, I don't contact them or their families except occasionally through a comment in their CaringBridge or CarePages journals.  It would certainly creep me out to have a stranger jump into my concerns -- and these sites are set up to provide patients and families with a good measure of protection.

Derek's family is so warm, so desperately funny as they travel with their "special boy."  They would go to the ends of the Earth were there a treatment available for him, and are now brought up short by the realization that the treatment phase has passed:

The twist to the story, or the change of plan, is that Harvard is no longer an option. We have nothing left in our bag of tricks. The doctors indicated the disease is progressing faster than they anticipated. We need to enjoy every day and make it count. God has other plans for Derek.....see, I knew that boy was special.


But while God has plans for him, Derek is still here, and still in need of prayers, though no longer for a cure, but for peace and comfort.

Please continue to hold him in your hearts.

Hannah's Crane

From Prayers for Hannah
[Hannah is Prof-de-Rien's Hero!]

Crane Stance Bronze
Attributed to Dimitri Chaparus

photo by chris hartman

Master John Holden

Pencil and Water Color on Paper by Patrick McColley

Novel Journey

At the Canterbury Music Festival/Roger Gemelle

Portland Kung Fu Club Photo

Uploaded by jonakashima on Sep 12, 2009

How to make a traditional origami Tsuru (crane)

the one where i finally show my face...

okay, friendly readers, i am wayyyyyy febrile and it's kind of evident.  i hate a sweaty head, in particular, and the shivers.  the burning eyes, not so bad, except that i have made it to then last 20 pages of a novel and now cannot decipher the ending.  maybe by bedtime, which, given that it's now 4 pm, might arrive any time!

here's my plan for this post.  a picture of my hero hannah, as she tests out a prosthesis and remains a young girl staring, unblinking, into big troubles, then flashing a beautifully defiant smile.

then, i am going to try to post a video update of my lovely hands and feet, and maybe a spot from my face, though we all know that'd break the camera, ha ha ha. it's a weird new development, kind of like the weird old bumps and bullae that plague my right leg.  it adds to my feelings of confidence and encourages my desire to appear in public.

as for an update on my relationship with the new specialist on The Team, and my cancellation of the big and important appointment i had with my dear mdvip go-to-guy, i'm gonna lift a "blog" post i put up over at drphil.com, that cess pool of cess pools that attracts me like a cess pool fetishist. oh god.

sometime today, i need to clean our private quarters here in Marlinspike Hall, as Marmy Fluffy Butt has been  experimenting with projectile vomiting -- most impressive, i must say.  thank goodness that our stepdown living room space is populated with most of the mission style furniture put out by l.l. bean -- meaning that slip covers are removable and washable.  not by moi, of course, as this useless left arm is... useless, but by the dear, dear fred.

as for Marmy Fluffy Butt, herself, a large part of the issue, i feel, is that she is still avoiding me like the plague, and i am her main aesthetist.  i was her daily groomer, her weepy eye cleaner.  i kept Miss Thang free of hair balls and other such gross happenings.  however, ever since i administered her eye medicine, she runs from me.

nay, she flees.  it hurts my heart, as that daily time with her was precious and i miss it.

and now, we must worry that she has a gastric blockage, though she did, i believe, just go streaking and shrieking past my bedroom door, Buddy the Freakishly Large Kitten hot on her trail.  so maybe i am worrying needlessly.  but she is such a tiny thing, all hair, really, and she's so weird that i think we may be cosmic twins.

okay, so now that i've exposed the intricate details of this post's plan, i need to go take care of these plebian matters, the vacuuming of the futons, the spot cleaning. oh, and maybe i should begin the makings of a dinner for Fred, and a rapid damp mop of... everywhere.

i cannot tell you how badly i hurt, how much i have cried today.  how hopeless it all seems.  how much martin bashir irritates me.  how i hope michelle obama speaks tonight as we all know she can, and that it lifts my spirits.

msnbc (oh god, don't get me started...) has shown several times a short clip of barbara jordan today, and it has been a comfort, for some reason.  that voice, that dignity, that intelligence.  that humor, and all the unknown suffering turned into triumph simply by who and how she was...

there is hope, there is beauty, there are stolid, solid lovely people.  and i am off to vacuum, dust, and mop -- while the percocet is working.  but i promise to be back to fulfill my compositional promises.

in fact, before i go, here is hannah:

from Hannah's CaringBridge site

this girl rocks.  at the moment, she is getting a break from chemotherapy due to low numbers, not something that anyone wants, though i bet there is a secret bit of relief, a brief sense of vacation.  she's been steadily going through chemo, sometimes clearing her numbers like a champ, sometimes falling prey to fevers and nausea.  but what doesn't change is her steadfast attitude, her straightforward walk through this unexpected trouble.  is she still my hero?  you bet.

okay, i am up and heading for the mission living quarters. yay?
**************************************************************************
it's no longer today, it's tomorrow.
i slept so hard, so long, and am thinking about doing it again.  i missed michello obama's speech. drat.
but i remember the dear ms. keenan, of naral.  hooray!  i think she did a great job.
i have no clear recollection of even writing anything above the dotted line.  still, following my own intructions, i just snapped some photos -- because video is impossible due to my hands shaking.

first, five photos of my right foot, the site of onset for "my" CRPS.  i think i will eventually lose that leg.  this is the leg that the new superduper famous ortho i saw last week would not even look at. not a brave soul, him. he?

then comes the most painful, though not the most painful looking -- my left foot/leg.  only two shots because the pain just does not show.  the onset of CRPS in the left leg came about 2 years after the right foot/leg.  i simply woke one morning, and *poof* -- there it was, a purple, cold, burning left foot.  and now, this foot/leg is behind most of my extremely loud, hopeless verbalizations and castigations of God.

next... my hands are kind of freaky right now, and embarrassing... so i just showed you the extreme weirdness of the nails.  it began on my left hand a couple of years ago -- the thumb and middle finger only.  then, one morning -- *poof* -- i noticed that the thumb and middle finger of my *right* hand had begun to ape the left side.  the symmetry of CRPS is just... creepy.

i had to show you poor marmy, hiding away.  she's upset that we washed and vacuumed and generally rendered antiseptic her favorite furniture, plus she feels like crap and won't accept any nuggles or loving.  i did see her scarf down a few treats though, so she's okay...

also, marmy is there as a buffer for the first time i've ever shown even a bit of my face.  maybe now my family, constantly demanding photos of "me" can understand.  i have CRPS crapola even on my face.  please respect how absolutely ugly and socially WRONG that makes me feel.

besides, you know the rule:  no wearing of CRPS faces out-of-doors or in photography/videography after labor day.

without further ado:

oops, i almost forgot the cess pool of cess pools, the "community blog" area of drphil dot com.  why i put it there is anyone's guess.  oh, i know:  i think dr. phil can cure me.  i think he is one hunk of a brilliant psychologist.  yeah, that was it.  so here it is.  stylistic differences and lack of cussing that may be of note are due to an ongoing war with moderators there, who do not like publishing ANYTHING i write.  hmmm, maybe that is why i am over there, pelleting them with writing!

summing up  [stolen from drphil.com, mwa ha ha ha!]

i have to redefine my relationship with my "mdvip go-to-guy," my pseudo-concierge internist who has been keeping me alive for about 13 years now.  i cancelled a huge appointment i had set up with him for tuesday after my experience with the new ortho specialist i saw last week.

basically, the hip dude (as we shall call the new specialist) said he would be "too scared" and even "terrified" to operate -- and he's purportedly one of the top hip dudes in the country.  he looked mostly at the floor while he talked to me.  he had already spoken -- twice -- to my infectious disease dood guy, and, to shoulderman, as well.  he did not even want to proceed with a simple ultrasound, and really, really wanted to avoid discussing doing an aspiration under fluoroscopy.

i drove him to his bottom line and that turned out to be... no one thinks even a wash out of the right hip is worth doing.  they don't think any more effort should be expended on trying to defeat this infection.

i pointed out, with what i consider amazing calm, that this leaves me with daily fevers, chills, sweats, whole days in bed, whole weeks in bed, and diminished.... everything.  i did not mention pain, because then my sangfroid would have boiled over.  i did not mention pain because, hey!  that wasn't his specialty.

i tried to poke at him enough to see if the CRPS in that leg, in particular, was part of his reluctance to go after the infection.  just as he wouldn't look at me, he wouldn't look at that leg.

so... i am to keep a follow-up appointment with infectious disease dood, even though that appointment does not exist.  i am to wait another month, for a reason i cannot remember -- but i think he wants more time between ending abx and testing.

but then, what to do with the message:  if we grow a pathogen from the aspiration, i still won't operate?

so i came home, crying in the car, because, damn it, it hurt -- and then looked at the calendar and  saw my upcoming big assessment appointment with mdvip go-to-guy.... and emailed him to cancel.  he's been very brave, very helpful... but if the specialists won't do any more, what can he?

my last visit with nathalie, i begged for an injection of toradol.  she said they didn't have any.... "sorry." so when we were in the pharmacy, filling all the damn opiate prescriptions, i pulled the dear pharmacist aside and asked him if toradol was available in non-injection form.  "yeah, and i don't know why, but no one prescribes it anymore except as inpatient, by i.v...." so i ran (okay, rode) back up to the office, and left a note marked URGENT for nathalie... and lo!  the angel of the lord guided her hand and mind, and she called down a 5 day prescription.  it's a pretty dangerous drug, and that's as long as i can have it.  so this is my first whole 24 hours off and i can feel it.  will she let me have it one week out of the month, do you thnk?  one week when the bone pain can be brought down to non-screaming levels?

go-to-guy doesn't know this happened, nor shoulderman.  i've had serious bleeds in the past and all that jazz, my hemoglobin is dropping about a point a week (until i stopped going in to have it drawn) -- "for some reason."

i feel like i need to tell fred that i've reached the end... the trouble is, he thinks i've been there so many times before, he won't pay attention, or he'll think it is the pain talking.  i had hoped to leave him more money and a more organized house (one that could practically run itself!) -- but i have done the best i can.

so i am blowing off all the specialty dudes, and even my dear mdvip go-to-guy, though i know he is there for me, and always will be.  god bless the man.  this is how he answered my email:  "Sorry for what you're having to go through. I wish there's more I could do to help you."

and that about sums it up, eh?

the thing with feathers

I had a heck of a time using Blogger last night and hope the issues have been resolved.

Other hopes for today?  That GOOG will shoot up to 700 or so.  That URBN will at least reach that point where I can comfortably bail.  That Marmy Fluffy Butt's left eye ceases to seep, so she can have some relief from her allergies.  That I successfully capture on video the behavior that inspired Dobby the Runt's nickname of "Butt Boy." [And that the video be appropriate for a G-audience.]  That Fred stop racing toward the drawbridge  in his sleep [He keeps hearing knocks and "yoohoo"s in his dreams.  Twice already this morning, he's gone flying by, knees pumping, chest out, yelling, "I'm coming, I'm coming!" My reassurances that there's been nary a knock and not even one "yoohoo," were met with drowsy disbelief.]

Let's see, what else?  I hope that My Hero, Ms. Hannah, gets to go home from the hospital today, after her successful rotationplasty last Friday. Her Mom summed things up yesterday this way, on her CaringBridge site:

I could not hold back my tears of joy as I watched Hannah--my "miracle baby"--do her physical therapy session. She did almost everything on her own. She only had help from physical therapist for balance. Hannah did not flinch or pout or complain or cry. She said it didn't hurt at all and was no big deal. She stood up on her own for a 5-count then sat back down and did that 5 times in a row. Every day I am more amazed by this kid. I'm so proud of her!

I know there are more hopes percolating inside my head and heart.  Dare I give them voice?

I hope that the two-inch nugget glimpsed under the bed (from whence I was retrieving my grabber -- using my cane!) is not what I think it is.  This is the Poo-Free Zone of The Manor.

I hope that federal officials can charge George Zimmerman in the murder of Trayvon Martin, as well as investigate any malfeasance on the part of the Sanford police.  There are several reports that seem credible of officers attempting to "mold" witness statements into a form friendly to Zimmerman's twisted version of the crime.

I hope that yesterday's despair doesn't taint today's progress.  The return of fever, sweats, and that particular pain of the bone infection really got to me, for some reason.  As if another couple of far-from-routine surgeries, $250,000+ in hospital and LTAC bills, intravenous vanco and Cubicin, oral Bactrim, and the wound vac experience were not enough to make me realize that I'm in the midst of another failed attempt at a cure, it took my inability to pop the top off of a can of Progresso soup to have it all sink in.  [The soup?  Tortilla y pollo, doctored for more heat.]

Other fantasies?  That I could spend this Persian New Year with  my former best friend, the Wild Iranian Lesbian, admiring the beautiful table, the flowering hyacinth, the optimistic gold fish.  My hope, of course, is for her year to be a wonderful trip around the sun.


I dare to hope that the Ellerbecks have a measure of comfort, somehow, today.  


I wish Captain Haddock would just go ahead and surface in the moat, in his jaunty little pink submarine -- the threat of a Domestic Inspection is so much worse than the actual wielding of The White Glove.  [Fred found The Castafiore waxing the steps of Buonarroti's Spiral Staircase again, and spritzing the Old Masters with household cleaner laced with ammonia.]


Given what I can glimpse outside this casement window, newly installed in the upgraded Computer Turret, I hope to "play in the dirt again" sometime very soon, if not this day.  The sky is blue and so is the sea... Drat. Why is I Am a Child playing in my head? I fear it is the impact of thinking about the Trayvon Martin travesty down in Florida.

At least my brain picked the Buffalo Springfield version.



Uploaded by SixtiesOnly on Jan 21, 2011

I hope, as does everyone in vicinity to moi, that I can overcome my fear of falling and take a shower today, the first since the morning of January 23, 2012.  Somewhere in this blog, in another of my awesomely introspective and well-organized posts, I detail how to maintain a pristine state without benefit of getting in the bathtub.  It's not so easy these days, and more than anything, I actually long for the feel of water on my skin.  [In my case, due to CRPS, running water feels an attack of tiny needle sticks -- tolerable, but sometimes just barely tolerable.]  My legs, especially, need a soak.

I hope, too, that I can pull off a shower without that being my pinnacle achievement for the day!

Because I also crave and want and expect and yearn for... a day put to good use.  You know, when you don't just fill the pets' bowls with food, but take careful time to sanitize the bowls first.  Did you know that eating from plastic bowls can cause pimples to sprout around a cat's mouth?  I didn't think so!  Only one of our bowls is plastic, and we use it because Marmy Fluffy Butt (aka I-choose-to-leave-my-poo-beside-the-litter-box-for-your-maximum-pleasure) will not eat out of anything else.  That reminds me.  I absolutely pine, fancy, and crave the services of an animal psychologist.

This day, cast useful, should include other bits of spot-cleaning.  The disgusting coffee apparatus that Fred uses -- and that Bianca's frequent overnighter, Sven Feingold, adores -- hasn't been washed since... well, since I last had a shower!  In between hospitalizations, while I was insane with fever and dehydration, I made several inspired online purchases, the best of which proved to be a new Bodum French press, so I am brewing my coffee separate from Fred, Bianca (and Sven).  I tell you, it was like Christmas (finally!) for a few days, in spite of the definite Lenten attitude exhibited by our UPS driver.  I had no recollection of my purchases but fortunately, some innate good sense prevailed and I only ordered household items according to an apparent "upgrade" theme.  Frilly stuff like a new dish drainer, and magnetized tools (miniature grabbers, really).  Even the more wasteful orders are not so wasteful, after all.  Not if you squint and stare into the direct sun.  For instance, even though we now have enough bonito flakes to make dashi for all of Japan, I have faith that my Buddy the Freakishly Large Kitten will eat his way through them by the end of the year.

How did the shelter staff not know that he was a Maine Coon?!

Other expectations, faith, and fancies for today?  That we can figure out the idiosyncrasies of this new wheelchair before hosting the "Wheelchair Tech" tomorrow.  It seems like such a small matter, hardly worth someone making the long journey from Tête de Herge's only Full Service Gimp Supply Store.  Still, it is not a good thing to suddenly lose power in the midst of crossing the street.  There's also the whiplash factor!  Fred, stubbornly sticking to scientific method, has debunked each of my theses about the cause of this behavior, citing "coincidence" as the underpinning for my observations.  I much desire equanimity should we tackle the problem again this afternoon.

I'd positively love to do some cooking and baking, but cannot wield a knife.  That's not true.  I just cannot safely wield a knife or expect that my knife skills won't result in personal tragedy.  Hence, the adventures with soup cans and many microwave meals.  Fred is a great cook but he's kind of in recovery right now, himself, you know.  Bianca?  Puh-leeze!  Sven can concoct some amazing comfort food dishes but I can feel my blood vessels begin to clog after the first few bites.  And it turns out that asking for help from the genetically indentured Domestic Staff can result in charges of Abuse of Power.  Who knew?  Damn those corporate flow charts.

Well, if I don't end this, and then finish revising the post that Blogger was blocking last night, I'll never get to my extensive Wish List.  Hmm, how to close, how to close?

As if you weren't expecting it!

Hope

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

-- Emily Dickinson