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i’m sorry.  right now, i cannot be a good friend.  i am not a good wife or daughter, sister, neighbor, niece or cousin.  i love you.  i appreciate everything you do for me and for my family.  but for now, everything i have, every smile i can eke out, every happy moment, belongs to my daughter.  i can’t give you what you want, not today and maybe not tomorrow either.  i don’t have enough for you.

my fear is all-consuming.  i am endlessly treading its dark waters.  your well-intended positivity crashes into me, knocking me down before washing back out to sea.  your genuine, heartfelt words of hope leave me salty-eyed, gasping for air, bracing for the next wave of “you’re so strong!” or “kids are so resilient!”

your generous offers to help are not falling on deaf ears, but i’m afraid my desperate cries for it are.  i can hear you happily proposing your casseroles, a walk in the park, an eager “whatever you need!”  i’m sure one day i will very much need those things.  today i just need simple kindness, compassion, companionship.  i need you to hug me and hold my hand.  i need you to stop worrying about the tasks on your list and just be with me, sit here and keep my head above water.

i realize nothing about this is convenient for you.  i know the closer you are to me, the deeper the water, the stronger current.  i’m sorry that you’re being pulled in, challenged, diverted from your regularly scheduled life.  but, this is my nightmare and sadly, you’re in it.

so bite your tongue,
you’re not the only one
who’s been let down.

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 today we met with yet another surgeon.

tomorrow, i’m having a medi-port implanted.  there’s just nothing like hearing, “well, how about tomorrow?” from the kind, but all too cheerful surgery scheduler. 

the procedure, which is done under sedation and local anesthetic, is scheduled for 1pm.  as soon as i’m recovered from the sedation i’ll be able to leave the hospital, pain meds in hand.

 

here’s what it looks like:

port

 
 
and here’s where it goes:

where it goes

 A  port

 B  catheter

 C  subclavian vein

 D  superior vena cava

 E  pulmonary vein

 F  aorta

 G  heart

 

 

 

 

the muga scan went fine.  nugget enjoyed her time with her grandmamie and even spent the night downstairs with her. 

saturday will be more nugget fun time with grandmamie after mommy’s radioactive pet scan.  i’m going to ask if i can sneak out to catch sex in the city.  i’ll promise not to sit next to any small children or puppies. 

tuesday, we’ll meet with the oncologist to discuss all the test results and treatment plan.  i’ll probably start chemo net week.

(incoincidentally sung to the tune of farmer in the dell)

pump and pump and pump
and pump and freeze and steam
pump and pump and pump and pump
and freeze and steam and eat

pump and pump and pump
and freeze and steam and sleep
wake and pump and pump and freeze
and steam and eat and sleep

 

the biopsy was awful.  he had to do it twice.  the first time he got the aspiration just fine, but no biopsy.  so he tried again, still with no luck.  he thinks the aspirate will be sufficient though.  the slides went off to new york and the results should be back next week.

wednesday, i’m having a resting muga scan to make sure my heart is healthy enough for treatment.  saturday, i’m having a pet scan to see exactly what lymph nodes are affected.  both scans involve the administration of radiopharmaceuticals.  this means that after the muga scan nugget won’t be able to nurse for twelve hours and after the pet scan for twenty four hours.  i also have to stay away from her.  my mother is coming to help.  hopefully she’ll be able to distract nugget and keep her as happy as possible.  my doctor has given me more ativan to help keep me as happy as possible.

last week we accepted an offer on our house.  the appraisal and inspection went well.

yesterday, we got a call from the apartment complex we rented in when we first moved here from manhattan telling us our old floorplan is available.  phew!  apparently it’s quite sought after.  we had seen a smaller one and i swear i could feel the walls closing in on me.  for as much time as i’ll be spending in it and with nugget daddy working from home, space is a huge issue.  luckily new carpet was just installed, so it will be that much more cootie-free.  it’s within walking distance of the hospital where my oncologist is, not that i plan to be walking there, but it’s perfectly located.  unfortunately, it’s on the third floor, but space won out over stairs.

i got a pedicure this afternoon and nugget is still asleep in the car.  nugget daddy is happily sitting in the driveway with her, reading the home owners’ association binder for the new development we’re building in.  the construction schedule has our home slated for completion september 30th (happy birthday, sister!), so we should only be in the apartment for about four months.

i like the oncologist.  he is very kind and reassuring.  it looks like it will be about two weeks before i start treatment, as i have a series of testing to complete.  two of the tests are diagnostic and two are to make sure my organs are healthy enough for treament.

monday i’ll go for a pulmonary fucntion test.  it’s just a breathing test and will show how well my lungs are functioning.  this is especially important because of my asthma and the fact that the affected nodes are primarily in my chest and neck.  the goal is to see that my lungs are healthy enough for chemotherapy and not at risk for secondary complications.

thursday i’ll have a bone marrow biopsy done at the oncologist’s office.  he described the procedure in-depth and assured me it isn’t as bad as it’s made out to be.  he prescribed some ativan (lorazepam) for me though, so i won’t freak out during it.

the other two tests are a pet scan and a resting muga scan.  once those are scheduled i’ll explain what they are and when they’re being done.

we got our first offer on the house yesterday.  we countered last night and are waiting to hear back.

we’re meeting with the oncologist this afternoon.  i suppose now we’ll start to get some answers.  how sick am i?  what kind of treatment?  when will it start?  how long will it take?  as you can imagine, the list goes on and on.  in fact, i bet you’ve already asked me your own list of questions.  everyone who calls or writes has their own set, but they’re almost all the same.

“how are you?”  really, how am i?  shitty.

“when do you go to the doctor next?”  today.

“what stage is it?”  i don’t know yet.

“how’s your husband?”  he’s fine.  he doesn’t have cancer.

“how’s your daughter?”  right now?  she’s fine.  why don’t you ask me again after i’ve started chemo and she’s crying hysterically because she wants to nurse and i can’t?

“is there anything i can do?”  yes.  you can call me.  or visit.  or write.  a lot.  i need more distraction than you think.  please do not make me bad food or offer to take my daughter somewhere.  let me complain.  let me sleep.  don’t think you need to tell me how i need to “keep a positive attitude” or that “kids are so resiliant.”  don’t tell me about your problems.  i don’t give a shit.

 levi

we had to put our sweet kitty levi to sleep this afternoon.  he was fourteen, lovely and will be missed so very, very much.  this was taken on the last day of february 2007, four days after we brought nugget home from the hospital.

i have hodgkin’s disease.

 

the nice lady from the thoracic surgeon’s office just called.  tomorrow’s appointment got bumped to noon because of an emergency surgery.  she wanted to give me “first dibs” on the reschedule time.  that’s not making me feel very good.

these precious things

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