Posts Tagged ‘sarcomas’

If I can’t have children, I think I’ll adopt.

In Cancer Sucks on April 26, 2012 at 9:15 pm

This post’s title was my daughter thinking aloud to my wife in the car a while back. Given the possibility that the chemo and radiation may in fact prevent her from having children one day, that’s a good plan to have. It’s a sucky plan to have to make when you’re eleven though. And it’s a sign my daughter is much more aware of her situation then she let’s on to us, as it’s a topic we never openly discussed with her. Kids are pretty smart and they pick up on a lot, cliché yes, but this is an example of why these clichés exist.

Haven’t written here for quite a while, partly because no news is good news, partly because I don’t want to think about cancer if I don’t have to. But it sneaks up on you anyway and today I feel like I have to get it all out.

It is the first of our two-year cycle of a every 3-month MRI & CT scan my daughter will get to make sure this cancer that has a high re-occurrence rate doesn’t reoccur … It’s a reality that is rather unwelcome after being in a “let’s get back to normal” bubble the past couple of months. Her hair is growing back although still short like a marine recruit, but soft as down. She is relishing being a student and doing very well in school. I suspect she likes school work partly because it makes her feel normal again too and it is something she can worry about but, still have some control over. She has energy and humor and she likes being with us and us with her, she and we are pretty happy just being.

But being back in the hospital again, even with the nice nurses and lab techs and anesthesiologist, reminds you how badly you don’t really want to be there. The waiting waiting waitng doesn’t help either just more time to think and even endless rounds of Angry Birds doesn’t really help.

And when the nice recovery room nurse says “we hope we don’t have to see you again,” it’s hard for me to reply for fear of choking myself up, because we will see them again. Every three months for the next two years. And then every six months and then annually …

On a lighter note, another thing I was reminded being back at the hospital today is that Au Bon Pain’s coffee and cinnamon buns look better than they are. That turkey club sandwich is still quite good, the coffee and cinnamon buns are just OK. I’m writing this to remind myself and save myself a few dollars and useless calories in the process.

Again, I wish I never had to know about the pros and cons of the food choices at the hospital. But it’s one of those weird and quirky things I now know because I have a kid with cancer and have spent a lot of time there.

“I throw up six more times and two more shots and I’m done!”

In Cancer Sucks on December 17, 2011 at 1:11 pm

That’s my daughter’s mantra right now. I really love her math on this, it’s her sense of humor and her reality in timing out the end of her treatment. It’s nice to finally see a glimmer of light at the end of this very long dark tunnel as it where.

It’s funny I haven’t posted for over two months and since the successful operation removing her softball size tumor (although I have been “posting” my reactions and thoughts in my head all along). I should have been elated yes!? But even though the surgery went exceedingly well and was done in 3 hours as opposed to the projected 8 to 10, it was hard to celebrate when you’re watching your daughter react badly to morphine and the recovery is a minor ordeal in and of itself.

After optimistic hints from the surgical team that we would have clear margins, the tumor had come out “cleanly” and intact, the plastic surgeon and hand specialist who were on call were not needed and the amount of muscle taken out due to the proximity of the tumor or in the margins was minimal, so functionality of the hand and arm was expected to be near normal. There was a lot to worry about with this operation to say the least … we find out finally(!) a week later that the margins all came out clean … and a sigh of relief … coupled with the let-down of the pathology being indecisive about the effect four rounds of chemo and a round of radiation actually had on the tumor (we went through all that for what?). Although the tumor was intact and did not metastasize indicates that all this treatment had some positive effect (right!?) … It all could have been so much worse or so many gradations of worse.

Yet, still hard to get happy as we are then reminded that the protocol still requires three more rounds of chemo, so we were initially looking at early January as the end of treatment. But, knowing as well all along that you’re never really done, she’ll have a lifetime of CT scans and MRIs to be sure it never comes back … or another type of cancer strikes (as happened to my mother/her grandmother), so in the back of our minds we are very aware that it never really ends … all part of the over-arching “Cancer Sucks!” theme here.

Thanksgiving is in the hospital for Post-Op Round One of chemo, so not exactly festive, even though the donated turkey dinner is very welcome and good. And we have a second T-day dinner at home with her grandparents after being released from the hospital. Again not exactly festive as the conversation isn’t exactly a fun-filled catalog of the past year’s delights … but interestingly the end of November and early December does turn in to happy time.

My daughter is in very good spirits, hence the quote-title of this post. Her wound and arm heal rapidly. It looks like she will have nearly full movement in her arm and certainly has full functionality of her hand. I’ll be surprised if there is even any need for rehab, so I think this plays in to this feeling of general goodness lately. We just like all being together, seeming to relish the uniqueness of it, given the tumult of the past five months. We just liked being for a change.

So the girls pool their saved b-day money and buy a little pet Roborovski or Robo hamster (I typed out the breed because I know we will forget what he was in distance future), whom for reasons I can’t comprehend, they name Joseph, which seems unnecessarily formal for a hamster …so to their annoyance I call him Joe. Just an example of why it was so nice to be “normal” for a change.

Prepping for Post-Op Round Two of chemo did put a dent in it all as one would expect. One of my last bonding moments the weekend before my daughter was off to the hospital again, was shaving her itchy head with my new beard/hair trimmer. The new rounds of chemo was making her hair fall out again … but, it made her happy to have a buzz cut, she’s very practical about all this. So yes, on one level it was appalling sad to have to shave my 11 year-old daughter’s head because she losing her hair due to chemo due to cancer. But on the other hand seeing how she was handling this in a matter-of-fact practical way made me really proud of her and proud of her strong psyche through this. OK, writing this now and thinking about it is emotional and is reminder of the suckyness of this whole situation.

But, the goods news, coupled with the ever-necessary bad news (third round of chemo postponed until after surgery to remove two minuscule spots on her lungs in early January, one of which we knew about already, but are apparently they’re right next to each other and they don’t what they are, but chemo hasn’t made them disappear and our oncologist even said that CT scans are so detailed now that they find all sorts of benign things all the time, but surgery is still the best option just in case, especially since the effect of the chemo on this type of tumor seems to be minimal).

Anyway, good news … she and my wife make it through another 4-day hospital stay on the preferred oncology wing with the great nurses and familiar faces and finally(!) a nice room-mate family. Which again is one of those “people are amazing” things in terms of both people’s goodness (this case) and people’s awfulness (got a whole laundry list of that for another time). So my younger daughter and I spring them early Friday evening which coincides with the weekly the Friday-nite pizza party for oncology patients, one of those “lucky” coincidences of her Tue-Fri treatment schedule. Everyone gets home happy, the girls are elated to be with each other again, and excited by the twinkling Hanukkah display on the mantel and that it begins next week (and happens to include eight nights of presents ). The pug is elated and relieved that everyone is home. Everyone is exhausted, but glad to be in their own beds with no IV pumps beeping in the background … just street noise and random barks from the pug’s crate for no apparent reason …

Not really what I wanted to hear.

In Cancer Sucks on October 6, 2011 at 6:12 pm

I yelled upstairs this afternoon, whilst telecommuting, to let my oldest daughter know I’d be downstairs (and within in earshot for phone calls / her questions / her requests).  She yells back, “OK Dad, I’m practicing writing with my left hand.”

Sounds like a great kid thing to do, you know, try to learn how to write with your other hand … for kicks, neat trick and all …

For my daughter this may be a reality in a month … I mean it will be reality after surgery.  She’ll probably need physical therapy, her right arm will be sore … And I also mean she may have no right hand, or arm for that matter.   I don’t think she knows this is a possibility and our understanding is that this is an absolute worse case scenario, but then again our whole last 4 months have been a worst case scenario as far as we’re concerned, so there’s that.

We’re at a break in treatment before the long awaited surgery to remove this damn tumor, our mantra is “get it out.”  But we have weeks to go before surgery, her body needs to heal from radiation and 4 rounds of chemo … she’s tired, we’re tired.  Sick and tired of living with this, tired of not being able to get to sleep at a decent hour because you can’t get the worse possible scenarios out of your head … and they get pretty bad … still dis-believing that your daughter is bald and a cancer-kid … It all takes an emotional toll on you.

And yes that’s a cliche, but again, these past 4 months have been full of all of them: take each day as it comes; take one day at a time; be thankful for what you have; it is what it is; question authority (e.g. your doctors); be a good patient advocate; god is dead (that’ll be fleshed out for a future post, my road to atheism <LOL>); and live each day to it’s fullest …  yeah, we would, but we’re too friggin’ tired …

Hey, lets end on an up note!

Does she still have a great giggly laugh? Yes.

Does she still have a sly sense of humor?  Yes.

Is she still a speed reader, plowing through her library books and Harry Potter websites? Yes.

Does she still play nicely (as well as bicker) with her younger sister? Yes.

Is she still a great little girl that is taking this incredibly unfair intrusion into her very young life in stride? Yes, yes she is …

What can I do for you?

In Cancer Sucks on September 8, 2011 at 6:44 pm

Renowned Surgeon: “What can I do for you?”

Parent – Dad (what I was thinking): … uhhmmm, well … how about you save my daughter’s life!?

Parent – Mom (reply in reality): … gives a gracious even-toned reply to start the conversation politely, so as not to start off on the wrong foot, and so that the surgeon does in fact help save our daughter’s life …

Thus started a long awaited meeting a week ago with the surgeon we’re hoping will rid our daughter’s body of this damn cancerous tumor.  Nice… But the meeting did get better and the lead surgeon in question here did warm up to us and laid out, as much as is possible at this point, what the surgery might entail worse case to best case.

And a shocker!!!  Especially in light of my previous post on surgeons and specialists … the surgeon and the intern actually touched our daughter’s tumor!  They checked her arm’s motor functions and strength, and actually took a physical look and interest in what they were dealing with.  So bonus points there!  On the other hand they are orthopedic surgeons, so one would suppose a physical exam of their patient and the effected area might just be a good idea before cuttin’ someone open.  I’m no medical expert, but just a thought …

So, ya think surgeons actually go to any sensitivity training in med. school?  Or does the whole “god complex” thing just so overwhelm their psyche that they don’t even see their own arrogance?  Kinda guessing the later … On the other hand cutting living people open, especially children, has got to take a toll.  Maybe this arrogance is a mechanism that keeps them sane and let’s them do their job.

I’m just being nice, utilizing my 3 credit hours in Psych 101, as well as years of pop-psychology from Donahue and Opera, and doing my darnedest to give these surgeons the benefit of the doubt.   ‘Cause I kinda need our surgeons to their very best darn job ever because my daughter’s life is at stake here.

Man, being a parent and not being able to “fix it” yourself really really really sucks. I can not emphasize this enough.

The other thing that is so frustrating is how in this amazing age of technology and online instant everything (including this blog), it still comes down to people actually talking to each other to communicate.  We’ve lost count how many times we have had to re-tell our daughter’s story to a doctor.  Even though they are all on our multi-specialist “team” and there are computers in every room with access to our records (right?) and iPhones are de rigueur for every doctor (guess the are filled with Angry Birds apps and there’s no room forEpocrates?).  I guess it’s nice to know that no profession has cornered the market on efficiency and communication.  And at this point telling “our story” is just kinda rote and we expect it.

Well, this is an uplifting post huh?

Let’s see: arrogance; inefficiency; helplessness … nice depressing trifecta there 😉

But really, I’m having a nice peaceful (and cathartic) moment writing all this.

I’m at my daughter’s hospital bedside.  We enjoyed a delightfully filling dining extravaganza from the Au Bon Pain in the hospital lobby (see previous post on my favorite ABP sandwich), while watching an equally delightful iCarly episode together, and now she’s chit-chatting with her friend on her cell phone catching up on the school cafeteria’s menu options (all weird and grossincluding plastic cheese!) … just like any 11 year-old girl … all the while I hear the hum of the IV machine dripping Ifosfamide in to my daughter.

Sometimes it’s just nice to be. Even if it’s the cancer ward in a children’s hospital.

And after all the ranting above, I do feel obligated to point out that the attending nurses and doctors on call in the hospital are again, amazingly kind, sensitive, and competent.  If you’re going to get cancer, this is the place to be.

But, I still really wish I didn’t have to know this first hand.

We’ve got things to do people!

In Cancer Sucks on August 21, 2011 at 5:12 pm

The generosity displayed by strangers and folks only acquainted with you by work or school or religious institution still astounds me. Wow… (insert long thoughtful pause here) … people can really be nice and they don’t, or hardly even, know us.

And I love that people give anonymously.  You just give because you know it’s needed, you don’t need to know who gets it.  And maybe my preference for this type of giving is because I’m a shy and hate a fuss and just feel you should do the right thing or a good job (and be competent dammit!), because it’s the right thing to do and it’s nice to be nice. …and I hate a fuss …

So things like covering parking fees at the hospital or sandwiches for the families on Thursday’s on the ward, or overall financial assistance grants, it’s all amazing and nearly always chokes me up thinking of this generosity by people I don’t even know and will probably never meet or get to thank.

Then there are the non-anonymous givers … Just beginning to run into a little of that, very little, but even that little bit of “look we’re doing the right thing” … or, and I think this is generational to some extant, “we’d like come over and see the family” is tiresome to be on the receiving end of.

Now a visit, or as the kids these days say “hanging out,” that’s nice for your close friends and acquaintances who’d you just hang out with anyway, never mind the cancer. But, really, if you just coming to “visit” and don’t happen to be an 11-year-old girl who wants to discuss Bieber’s hair or weave friendship bracelets or both … well, entertaining guests in the parlor takes a lot of energy (and we don’t have much in the first place) and we’ve got things to do people!!!

And those things to do can be anything from letting our minds unwind reading the paper or catching up on a book or listening to NPR or napping, to just being – looking around to see your whole family home in one  place, quite and happy and not interrupted by a nurse to swap IV bags … you suddenly realize what a luxury things like that are …

We’ve got calendars to update, and lists to make,  which doctors do we have questions for, and confirming appointments, and checking meds, and grocery shopping, and doing laundry, and mowing the lawn, and weeding, and cleaning the fish tank, and going to Home Depot to find stylish but cheap ceiling fans … and nap … All the stuff you do in normal life is now compressed in to your “off weeks,” the weeks your child isn’t in the hospital getting chemo.

And now we have daily radiation to add to that scheduling mix too, so the two weeks off are only kinda-sorta… That’s our “normal” and again, and not meaning to sound like an ungrateful git, but we’ve got things to do people!

And yes, thus post was inspired by a real incident the first day back from a week at the hospital where all we wanted to do was be lazy and relish that we were all home as a family … on the other hand said incident did inspire me to write a couple entries and those in question did leave a tray of cookies … I’m an ungrateful git* …

*we’ve been reading the British version of Harry Potter to the girls this summer, even though my oldest has read it twice already, hence the use of git 😉

As a addendum to my possible git-tish (if that ‘s a word) behavior, I will also point that the visitors in question also came over with their dog, I suppose the idea being their dog would provide a therapy dog visit … ignoring the fact that we have our own dog that has been a great pal to both my girls through this and is a little sweetie when he’s not being an a nut-job puppy running away with anything he can pick up off the floor.

So back to the story … without asking, interloper-dog is unleashed it at our front door and proceeds to run through our house with our dog in tow of course.   And then let up on our furniture without asking!  As a responsible dog owner I can’t imagine doing this with my dog!   We always if our guy can come in to a yard or play with another dog, or how the other dog in the house might react, etc. etc.  I mean good gravy! What if our pug went beserk on her dog!?

Instead our little fellow was just kinda perplexed at this interloper being in the house, jumping up on furniture that he’s too short to jump up on (although he is allowed on the sofa with a blanket spread out in a feeble attempt to contain his shedding <LOL>).   And to top it, this other dog’s up on the couch growling down at our guy.  And as growling interloper is jumping around up on our couch my wife asks, “she won’t have an accident right?” Response, “Oh, no, she never does that.”   And you just know what’s going to happen next …

So the kicker is, my wife finally insisted on taking them to our fenced-in front yard, especially after both she and I noticing that the interloper was sniffing around the floor a lot (which good dog owners take a a sign that their pup needs to go!).  And sure enough, the minute this dog gets outside it takes a nice long pee …

Well, this all sure made for a great story, and in reality was all probably over in 15 minutes.  But, it was like a case study for Miss Manners, or maybe we were being filmed for some new rudeness reality show and the release we need to sign just didn’t reach us in the mail?  Oh yes, someday we’ll look back and laugh … but, someday hasn’t come yet …

Cancer stills sucks: More things I’ve learned & Insights gained …

In Cancer Sucks on August 20, 2011 at 3:48 pm

Yep, cancer stills sucks.

After watching my little girl live with this for over 2 months now, it’s more correctly, chemo sucks, the cure seems worse than the illness and all that … It’s astounding what the body can put up with and it’s astounding what chemo does to a body. But being alive and seeing rainbows or going to Target to run errands kinda trumps not being able to do these things at all … Sweetie, even if you’re complaining about how going on errands to Target is the MOST BORING thing in the world and why can’t we listen to the Taylor Swift CD for the 8,042nd time … I am really truly am looking forward to hearing decades more of those complaints!  I really am.

And as a parent it also astounds me (not to overuse that word, but it does), how strong that emotional bond to your child is. I helped make that little girl. I first saw her first come into this world and ironically, the first thing I saw, the top of her head, looks pretty much the same now as it did 11 years ago because of chemo.  This parent thing really pulls at you at unexpected times with things she says, or her sister says, or that doctors say about her, or just thinking the “what if’s” in the middle of the night. The whole cliche of parents staying up all night worrying about their children, well I’m living it now …

Ongoing List of Things I’ve Learned (in no particular order):

  • You never realized how scary a cold can be until you have someone on chemo in the house.  As the oncologist explained, chemo drugs attack fast growing cells, like cancer cells, but also hair cells, and white blood cells.  I had never thought about it, but that makes sense and also make you realize that while there are all these advances in cancer treatment, to use a Call of Duty analogy, chemo is more of a shotgun than sniper rifle. Chemo basically makes you in to a AIDS patient since it so reduces your white and red blood cells and ability to fight infections and colds, flu, etc.  Granted, unlike an AIDS patient, you usually bounce back from this within a week or two and your body makes up for those lost white blood cells.  I’m Purell-ing and Handy-Wiping and just plain washing my hands all the time now, but what also scares me is that I was Purell-ing like a crazy-man at the hospital, but still caught a cold. Hoping this is not some super-Purell-resistant strain …
  • PET scans can only pick up cancerous masses if they’re a couple of centimeters across, whereas CAT scans and MRI can find masses mere millimeters across, but not necessarily tell if they’re cancerous (this is interpretation of what the oncologist told me and is not meant to be offered as graduate-level medical advice).
  • Pediatric Oncology is the purview of female doctors. Granted my survey sample is small, but we’ve yet to see a dude. And as an aside here …. I really like that my girls are growing up in an era and and country where many of the professionals they deal with: doctors; nurses; airline pilots; librarians (except their dad) … are girls, that’s their normal. Go grrls go! Part of why this struck me was sitting in the hospital last week and watching the interaction of the family sharing our room. They were Arabic, the mother wearing full head-scarf and gown, not quite a full burkha, but almost, so given the ensuing excitement, I thought this rather interesting.   Anywho, this Dad was incessantly arguing with the doctors (all female) and it may have partly been a case of language in terms of him trying to understand the regimen and what was all going on, but after the doctor referenced discussing something with his wife while he was out and him dismissing her decision, the feminist in me surged 😉
  • Surgeons and specialists don’t like to touch you. We’d noticed this with some of the oncologists when meeting them, even though the cancer in question is a visibly obvious tumor the size of Delaware.  And this interesting bed-side manner confirmed what me and my wife had discovered when we’d both had minor surgery in the past couple of years. Since our surgeries were successful, we both assumed the surgeons did in fact touch us when we were unconscious. But even in post-op exams for us, again no touching … Really? Shouldn’t you kinda make sure your work paid off and nothing is going to pop out unexpectedly alå Alien? On the other hand our GPs, Pediatricians, and nurses, as one would hope, are pressing and prodding away ’till the cows come home. Anyway, thought it an interesting little insights into the medical profession.

As a note to readers and myself … I’m kinda writing this for myself as a form of therapy I suppose, and also I hope that 30 years from now as I’m sitting with my older daughter (orbiting the earth in her space-station condo), she and I can read this together, not that anyone wants to relive this, but to get an idea of what dad was thinking as this all was going on and maybe give her some insight into raising my grandchildren.

My new reality … Cancer Sucks

In Cancer Sucks on July 28, 2011 at 9:18 pm

And I don’t even have it …  I already kinda knew that cancer sucks, my mother has had two bouts with it and know of a few folks  who have it too, but now my oldest daughter has it … and after almost a month of doctor appointments, endless testing and scans, and her first round of chemo it still hits me “wow, this is real, this is now my life.”

So, what I’ve learned in the past couple weeks …

  • Both my daughters are amazing little human beings.  Both have there own way of coping with this.  It’s an awful thing to try to make sense of.  My oldest has a way of reacting, compartmentalizing, and then being her normal cheery self.
  • There are astoundingly amazing, kind, generous people out there.
  • The accommodations that the staff at Children’s Hospital make to ensure the comfort and ease of their patients is impressive and comforting.
  • Nurses are amazing.
  • Amy & I work as a pretty good team, we’ve been hit with a ton of shocking news and information and are just dealing with it without any histrionics or going comatose and limp  …although making dinner is a struggle, but it was before this too 😉
  • Researching a disease and having knowledge going in is a huge asset when talking with doctors and your oncology team.  My mother’s fight with inflammatory breast cancer gave me a lot of knowledge and the lingo that really helped me understand what the oncologists where talking about and gave us the name of a drug that should really help my daughter daughter with side-effects.
  • The Turkey BLT sandwich at the Au Bon Pain at Children’s Hospital is delightful.
  • Invest in Purell, they have the hand-santizing market cornered in hospitals.
  • The free wifi at the Children’s Hospital is astoundingly easy to access for both smart-phones and laptops …and has amazing bandwidth, Netflix, YouTube, no problem.  So we don’t have to rely on the hospital TV and can stream iCarly as needed.
  • Commuting back and forth into Boston on a daily basis, not delightful … really didn’t need to confirm this, was pretty sure about this already.

But It’s all totally weird that I know these things now and I really really wish I didn’t have to know any of this and the list of knowledge is growing (wanna know about hospital parking decks in the Longwood area?)  … Now I’m one of those parents with a child with cancer and that just so totally sucks … but, it’s my new reality.