The Bombs Bursting in Air…

Five years ago this week we found out that Danny would never see.  He was 9 weeks old.  I can remember the heartbreak and trauma like it was yesterday.  Here is an excerpt from the email we sent to our friends and family that day.

We discovered Daniel’s eye was very clouded over on Memorial Day.  We suspected a cataract.  It took us two weeks to get into the Pediatric Ophthalmologist – not that getting in sooner would have made a difference anyway.  She (the Dr.) took one look at his eyes & made an appointment for the next day at Children’s Hospital Los Angeles.  Things happened very fast after that. 

Wednesday found us at CHLA seeing Dr. Song who specializes in cataracts & glaucoma.  After about 5 minutes and a quickie ultrasound on his eyes he said he had tumors behind both eyes & casually threw out the words Retinal Blastoma.  Know that I about checked out right then & there.  Glaucoma & cataracts are one thing… cancer is another entirely.    Dr. Song ran down the hall & grabbed Dr. Murphree who specializes in  optical tumors.  Dr. Murphree and another doc plus a resident all spent a bit of time doing an u/s on his eyes & decided that they needed to have a CT Scan & do an Evaluation Under Anesthesia (EUA) the next day.  He had bilateral detached retinas & maybe tumors but he wasn’t sure. 

So, fast forward to the EUA.  Thankfully, in the middle of the procedure the social worker came out to ask more questions to see if this was caused by his prematurity and let us know it WAS NOT cancer.  Insert a universe-sized sigh of relief here.  Unfortunately he did have glaucoma, she says.  Back to the OR.  

So, here is the official diagnosis/prognosis.  Daniel is blind.  Can you hear our hearts breaking?  He has Norrie Disease, narrow-angle glaucoma & bilateral detached retinas.  He will never be able to see.  Norries also carries with it about a 50% chance that he will lose his hearing at some point & be developmentally disabled.  That is yet to be seen.  There is really nothing they can do to restore his vision.  They can, however, relieve some of the pressure from the glaucoma.  So, on Friday, June 24th we will go back to CHLA so they can remove the lens & scar tissue from his rt eye.    They will do the left eye later on.    Obviously our lives have changed drastically overnight.  We’re still reeling from the news.  We appreciate your prayers for strength & good care while we go thru the surgeries.  We know God has a special plan in mind for our little man. 

In rereading this email I’m struck by two things: my immersion in the facts of his situation to forestall the pain heading my way (a coping technique I still lean on heavily) and our faith in God’s master plan. We have come a long, long way since that day.  We’ve discovered that the developmental delays are overstated but the hearing loss associated with Norrie affects closer to 100% of the boys.  The Lord giveth and the Lord taketh away. 

Life with Danny is always full of surprises!  I took the boys to watch our local SLO Blues play baseball on Saturday night.  It was fireworks night.  I had Danny sitting on my lap for the show.  It was awesome!  Easily as brilliant as any 4th of July fireworks display I’ve ever seen only better because it was so very close.  I could feel the booming reverberate in Danny’s chest as I held him!  After the show he talked about the fireworks non-stop as he usually does when something excites him.  One of his comments, however, stopped me cold.  “What was the big lights and the big booms?  Was it the fireworks?”

“Big lights?”  What?! 

“Danny,” I asked him, “could you see the lights?”

I never got a straight answer from him.  He was way to absorbed in his own questions to answer any of mine.  But he does have some light perception so it’s not a big stretch to think he actually saw the bright explosions of light in the fireworks show.  Can you imagine how beyond thrilled I am?  Can you imagine what a pure joy it is to think that there is something in the world that my sightless son can see and that particular something just happens to be so spectacular?  To think he may actually be able to understand on some level the “rocket’s red glare” line from the National Anthem (his favorite song).  Oh, be still my heart!!!

I’m just saying that life is good!  I am so lucky to have a wonderfully happy, healthy 5 year old with more gifts than disabilities.  I wouldn’t trade him for the world… but feel free to make an offer anyway.  Ha!  I’m always open to negotiation!

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Happy Holidays!

We wish you a joyous and loving family-filled Christmas

and a beachin’ New Year!

Stella, Daddy-O
Ben and Danny

The Journey’s the thing

Three years ago yesterday my whole world stopped. For a split second anyway. Before it was thrust into a strange slow-motion, fast-forward kaleidoscope of cancer treatment and regrets for a future with my children that might never be.

Is there and other phrase that has the same effect as “it’s cancer”? What powerful, life-changing words those are. Normally I would think news of a close friend or relative’s diagnosis would be worse than your own. But after careful consideration, I think it’s far, far worse if it is oneself. Particularly, if you happen to be the mother of young children.

When I heard the words for the first time my heart stopped. Confirmation. My worst fear. I cried.

Was I crying for myself? The prospect of death. The stress of all the medical tests. The relief of finally knowing. The fear of an unknown future.

Was I crying for my kids? Losing their mother at such young ages (that was the only end I could see for them). The confusion and pain they would feel because of me. The scars they would always carry. How those scars would change their lives.

Was I crying for my mother? Hearing that one of your children may die (not a certainty in her context for some reason). Bearing powerless witness as the child you created fights for survival. The pain that would cause – the unnecessary burden.

All those thoughts rushed through my head at once, scorching a path as they passed. Quickly in and out. Shock left in their wake. Mental paralysis. Yet my fingers started typing. As the doctor’s voice relayed test numbers and statistics through the phone to some walled-off portion of my brain, I tapped off an email to co-workers. “It’s cancer.” Even in shock I knew it would be less painful to type than to speak those dreaded words.

I don’t know how long that call lasted, but there was a tight wall of support behind me as I put the phone in its cradle. I couldn’t turn around. I felt marked. Marked for death. An object of pity. Not strong. Weak – in constitution and capability. A failure. I ran away from their concern like a coward .

~~~~~

All through my treatment, I never successfully shook those initial feelings of failure and weakness. I’d failed to remain healthy. I’d failed as a wife; cashing in the vows from our marriage. In sickness and health. Till death do us part. I’d failed as a mother. Would I see my boys grown? Would I leave Danny with a father stretched too thin from providing and filling both parental roles to adequately see to his therapies and education?

Yet I survived.

Chemotherapy made me realize what strength is… and that I have it. It gave me time to work through that onus of weakness and failure. Time to realize that God’s plan was perfect – even for my children. Even if it means that they may have to live without me someday. It gave me time to appreciate my husband for the man that he is and not the one I sometimes wish he was. And to be grateful for those in my life that have always been there for me, and even more that stepped out of shadows and into my life. Mostly, it gave me time to acknowledge my life, my loves and my future… in all its incarnations.

I am so pleased to be here three years and one day later. I am proud of the journey I’ve made. I am grateful that I have been able to walk my boys through a difficult time and prepare them for others in the future. More grateful still that those future tragedies just might not include their mother.

When I look back at that afternoon in December 2005 I see myself consumed with fear. Today I have replaced that fear with power and action. Daddy-O still refuses to mention the “C” word by name, choosing instead to simply reference his worry from time to time, knowing I’ll know exactly what he means. As for me, I talk about it often – stripping cancer’s power and making it my own.

I am more than a Breast Cancer Survivor – I am a Thriver.

People’s HealthBlogger Awards

A few weeks ago I thought it might be a good idea to enter Mothers With Cancer in the People’s HealthBlogger Awards. The Awards are for any bloggers who write primarily about health or healthy living topics. That’s certainly MWC! Plus, the Awards are sponsored or invented or made up… (whatever) by a website that is forever sending me all sorts of email invitations that I quite rudely delete and ignore. A little more visibility with our target audience would be nice compensation for the probable carpal tunnel I’ll eventually get in my Delete Finger.

Anyway, that great idea was a few weeks ago (I think). But, as I’ve been discovering, my mind is as water tight as a leaky dinghy at best… and a collander at worst. So I applied and promptly forgot all about it. That’s me. Memory like a steel trap! At least that used to be the case. *sigh*

Frankly, I’ve been a bit worried about my memory issues of late. I can’t seem to remember anything anymore. This isn’t the run of the mill Chemo Brain. On Wednesday Ben had an appointment with Dr. Flaton at 10:30. I saw it on the kitchen calendar that morning. I left Daddy-O a note reminding him to let the school know I’d be picking Ben up. I told Ben about the appointment. I even remembered to grab the medication evaluation paperwork from the bookcase. Next thing I know, my cell phone is ringing and it’s Dr. Flaton’s office calling to ask if we were keepingour appointment. It was 10:45! Gah!

The day before I discussed with Wonder Sitter keeping Danny home from preschool the next day. I agreed to call his therapists & let them know not to show up. I couldn’t even remember that long enough for the 3 block drive home. I did finally remember it 24 hours later as I was driving home from our office Christmas party. I am not going to go into the dozens of messages and reminders I have forgotten to give Daddy-O.

Of course, I worry about breast cancer metastasis to the brain. At least that’s what I worry about when I remember there is something to worry about. Directly after the thought of mets enters my head I hear a resounding “Pshaw!” bouncing around between my ears. I guess I don’t really believe I have a brain metastasis. It’s just that I have always had a near perfect memory – particularly for daily minutia. It’s frustrating to completely forget entire appointments and conversations. I imagine it’s much like being a man…

Just in case someone Googles brain mets looking for some useful information and got my drivel instead, I will include a list of the 7 Typical Signs or Symptoms of Brain or Spinal Metastisis.

In any patient previously diagnosed with cancer, the following should raise the suspicion for a brain tumor:

  1. A persistent headache with or without vomiting.
  2. Seizures (Change in type or frequency )
  3. Double vision, mental changes, speech difficulty.
  4. Stroke (brain hemorrhage). Certain brain metastases, such as melanoma, renal carcinoma, and choriocarcinoma bleed easily.
  5. Confusion
  6. Any numbness, arm or leg weakness, back pain, difficulty walking.
  7. Loss of control of bowel or bladder.

Numbers 6,7 are more common with spinal metastases.

Fortunately, I’m just forgetful (probably getting old) and a hypochodriac as the only symptom I can lay claim to is “mental changes”. If I can remember long enough I’ll say a little thank you for that during my prayers tonight.

In the meantime, click on the handy little button on the right and give a vote for MWC.

A Life Sentence

If you’ll remember back a bit, I posted an excerpt from Ben’s Sentence Completion List. This was an assignment from Dr. Flaton, the pediatric ADD specialist. As a very special treat for you today, I will post the remainder of Ben’s sentences. And perhaps a comment or two if you are very, very good readers. Just a reminder, Ben is 8 years old.

1. I would like to be a scientist.

2. My mother loves chocolate martinis. (ack! choke! cough! While technically true, this was not high on my list of things I wanted the doctor to know.)

3. I cannot have a cell phone. (This is so true. But I am considering wrist watch walkie talkies with a mile and a half range.)

4. If I only had a cell phone I’d love my Mom and Dad. (Boy! They learn early don’t they? The answer is still “NO!”)

5. Girls _____________________ (He had no reply to that. I find that comforting on so many levels.)

6. I am ashamed of Danny having attitude. (Note that he’s not ashamed of his own behavior. This answer is totally worthy of a presidential candidate!)

7. I am afraid of nothing. (Yeah, that’s what I was afraid of…)

8. I like Pokemon cards.

9. I don’t like summer school.

10. I love my Mom, Dad and Danny.

11. Boys are my friends.

12. Mother should do nothing. (I am not exactly sure how to take that… but I like it.)

13. There are times when I am bored.

14. I hate bullies.

15. It makes me sad to watch a kid being bullied.

16. My home is small.

17. Father should do nothing. (again with that?)

18. People think that I am stupid. (What!? After much teeth gnashing and hand wringing it turns out there is a snotty 2nd grader that asks him things like “what is 1000 x 200?” When Ben doesn’t know the answer he tells him he’s stupid. Grrrrr!)

19. Sometimes I think about skateboarding and fishing and surfing.

20. Nobody knows that I have ADD. (I can’t decide if it’s wonderful or really sad that he doesn’t get that people know he’s ADD…)

21. The best thing that ever happened to me was riding a horse.

22. The worst thing that ever happened to me was breaking my wrist the first time.

So, I guess we haven’t completely ruined our kid. Except for being outed about the chocolate martini addiction and the small house it’s all good.

Did anyone notice what didn’t make the list anywhere?????

CANCER.

That’s right. No cancer anywhere.

No, “worst thing that ever happened to me was mom getting cancer…”

No, “mom should buy a wig…”

No, “afraid my mom will die…”

Just normal, every day eight-year-old boy stuff: science, surfing, cell phones and Pokemon cards. Thank you, Lord!

Cross posted to Mothers with Cancer

Imaginary friends, clinical trials and the joys of poop

I’ve had a bunch of things to share with you, none of which seemed worthy of a whole post in and of themselves. So today will be a Tapas Topic day, in that the subjects will be small and plentiful yet not enough to make a post.

Tapa numero uno
First there is this new site called BreastCancerTrials.Org that lets you enter your health history, then matches you up with any clinical trials you might qualify for. All for free. How cool is that? Well, not cooler than not actually having cancer… but still pretty nifty.

I entered my information. Since I am currently cancer-free, am not undergoing any treatments and do not take Herceptin or any other receptor-positive treatments (praise God for all that), I only qualify for two trials, neither of which I am interested in at the moment. The first, categorized as Supportive, was on treating vaginal dryness for women with breast cancer. Um, yeah. No thanks. The second is Preventative in nature and one I would be interested in if it were closer to me. It is on diet and exercise to prevent breast cancer or a recurrence. So interested in that. Unfortunately, the nearest research site is Houston, TX. But that doesn’t mean YOU won’t have better luck so go fill out your own health history and see what pops up.

Tapa numero dos
And did I tell you that Danny has an imaginary friend. Yep. It’s official. Absolutely no one knows who Brenden is – ergo, he must only exist in D’s imagination – unless he suddenly grew a social life I don’t know about. (And how unfair would that be since I don’t have one?) I guess Brenden has been hanging around in conversation for about 5 or 6 weeks now. I actually thought he was a real kid. Danny talks about him the same way he talks about everyone else, in the third person, in question format, as if he interacts with them on a daily basis. (i.e. “Does Alayna clap at the soccer game?”) I just assumed Brenden was one of the boys in his new preschool class. When I finally got around to asking, turns out he’s not.

I’ve never known anyone that actually had an imaginary friend. Intellectually I know there is nothing wrong with it but I guess I’ve still always thought there was just a little something off about those kids. And that’s not to say there isn’t something a just a little off about Danny either… However, this article I found from the Seattle Post – Intelligencer Reporter was comforting nonetheless.

Tapa numero tres
For those of you sick to death of politics, please skip this tapa. Actually, this might fall more under the confession category than anything else. I voted “yes” on Proposition 8 – the ban on gay marriage. Weeks ago, actually. And now I wish I could take back my vote. I have never had an issue with civil unions or any of the other rights or privileges that come along with such a legal status. My single objection has always been with calling a same-sex partnership a marriage. How hypocritical of me. Who am I to deny equality to any segment of society? The worst of it is that I knew it was hypocritical and discriminatory when I cast the vote. And still I did it! I voted with my emotions and not my intellect. Gah! I hope it is overturned – again.

Tapa numero quatro
I promise this one is lighter by far. We’ve been seeing an ADD specialist for Ben, Dr. Flaton. I really, really like working with her. She’s already given me great insight into what it must be like to be ADHD… helped me see things from Ben’s viewpoint. At any rate, she gave Ben a bunch of questions to answer before our next appointment. They are haaard questions. At least I thought so. I guess they could be perfectly simple also. The few that Ben completed I thought were answered very well. (spelling has been corrected because I couldn’t stand it.)

  1. Tomorrow I will “go to the beach and play.”
  2. I wish that I “was rich and famous.”
  3. I worry about “my little brother.”
  4. I hope “I will never die in a 100 years.”
  5. My father “is going fishing today.”
  6. In school I “learn about science.”
  7. It isn’t nice to “be a bully to other kids.”
  8. My teacher “is nice and kind.”

Tapa numero cinco
Yesterday was our last soccer obligation for the season. It was an entire tournament day. We love soccer and have had a wonderful season – even though we haven’t won a single game. Well, before yesterday. We actually won the very last game of the season. 4-0. Woohoo! The boys were thrilled! Here is a picture of Ben celebrating with Coach Daddy-O.

Sweet, huh? Oh course, that’s not the real story here. Danny and I sat on the sidelines the whole day. We had a great time cheering an clapping for Ben’s team.

Unfortunately, Danny had an accident in his pants because the port-a-potties were so far away.

Fortunately, I had thought ahead and put him in a pull-up before we left the house.

Unfortunately, I had already removed all kid stuff from my van in preparation for Daddy-O’s fishing trip so I didn’t have any wipes or other pull-ups. Yikes! It was only 10 AM.

Fortunately, one of the other mom’s had everything I needed. Day saved. After lunch there was another small accident before we made it to the outhouse.

Unfortunately, this time there was diarrhea involved. Ack! Still no supplies and now day-saving mom had taken her diaper bag to lunch.

Fortunately, Danny doesn’t mind going commando.

Unfortunately, the diarrhea wasn’t an isolated incident.

Fortunately, he was wearing very dark, thick pants and there wasn’t very much of it… that second time.

Unfortunately, there was also a third time.

All I can say is that my youngest son is such a trooper. He was swooped up, rushed home, stripped, thrown in a bath, scrubbed within an inch of his life, brusquely dried & redressed then back at the soccer fields within 30 minutes. Surely a record.

Portions cross posted to Mothers With Cancer

New and Improved! Now even better than before!

That’s me. New and Improved.

The obvious, of course, is that experts have worked hard to remove all cancer from my body. As a result, I am now Cancer Free. And we all know that the less ingredients something contains the more it is worth. Today, however, I received an unexpected upgrade.

This afternoon I had my optometrist appointment. The first one in a little over two years. I hadn’t really remembered much from my last appointment. My main goal is always to get my contact prescription refilled and get on with my life. But that particular year, 2006, I was in the midst of breast cancer treatment. I had just finished 8 rounds of dose dense chemotherapy, had just had my first single mastectomy and was regaining my strength in anticipation of 6 months of oral chemo in concert with 6 weeks of radiation therapy. In short, I had other things on my mind than my eyes. So I was a bit nonplussed when Dr. E asked if my cataract had been bothering me.

I didn’t even remember I had a cataract. Once he said it, though, it all did sound vaguely familiar. Something about a very small developing cataract that we were going to keep an eye on…

At any rate, Dr. E settled in to begin my exam. “Let’s get a look at that fading near vision.” He says as he hands me a card with impossibly small letters on it. As he logged my results in my chart it was his turn to look a bit confused. It seems my near vision is better now than it was two years ago. I reminded him that I had been in the midst of chemo last time and under a significant amount of stress to boot. Perhaps that had effected my eyesight. He was skeptical. “Maybe… but that has never been my experience.”

Whatever, I know what stress can do. A bit of blurred vision is the least of the possibilities.

Then he moved on to “get a look at that cataract”. Only he couldn’t find it. You read it correctly. He looked and he looked. He used about three different lights and all but crawled inside my eyeball his own self. Seems I no longer have a small developing cataract.

Dr. E is such a jovial man. It was wonderful to see him all but scratch his head and smile while he said that it just must have been the chemotherapy because there certainly wasn’t any cataract now. He declared me “Too perfect. More perfect than last time.” and sent me on my way.

A little over two years ago I had Inflammatory Breast Cancer, a small cataract, fading near vision, and cough-variant asthma. Today I am cancer free, cataract free, have perfect near vision and no asthma issues to speak of. I’m a advertiser’s dream!

More importantly, I am blessed beyond measure.

Cross posted to Mothers With Cancer