new beginnings
yesterday, my first day back at work after the transplant, was comprised of many highs and a few (just a few) dark lows. i had worked myself into a lather at the beginning of the day--i was so worried about leaving hubby with no caregiver (and no one close by that he could call in an emergency) that i almost cried when it was time to leave. by the time i tried to finish some errands, the tears came for real and i was completely irrational. (note to self: bad customer service at the pharmacy is NOT a good reason to totally lose it.)
i got to work and, contrary to my preconceptions, the day got a lot better. i got a ton of hugs and my coworkers even left a gift basket in my office, complete with an anti-stress massage kit (which i will hit hubby up for when he's feeling a bit stronger.)
i got rained on (in a big way) when i left work--i was dripping wet just from walking across the parking lot. AND i had to administer my first subcutaneous injection of procrit to hubby last night. talk about nerve-racking, with a racing heart and barely breathing, i think i was more nervous than hubby! but I DID IT and didn't even hurt him (other than the pinch from the needle stick).
hubby has his first post-discharge checkup today, so hopefully things will continue to go well.
this might just work out.
the anti-stress gift from my coworkers
dropping temps and snow with a chance of isolation
hubby and i just got back from our thanksgiving trip, which i hoped would be his triumphant return back to normal society. hubby would return to the scene, have a dashing good holiday, and everything would start falling into place in our post-transplant lives.
the return was slightly less than triumphant.
before i go further, hubby had an incredibly rough few days last monday, tuesday, and wednesday, and everyone expected that he would be a bit tired. i had even purchased a mini-thanksgiving meal for the two of us in case he didn't feel like traveling. in spite of his marrow aspirate (mon), chemo catheter removal (tues), and final lumbar puncture (wed), he handled the trip from baltimore to waldorf really well and got up raring to go to my parents' home. the actual holiday went okay, which i guess i should be thankful for.
from there, things went downhill fast. hubby's cold that was all but gone when we left baltimore returned with a vengence. he slept most of the rest of our visit, in and out, prompting great concern within my immediate family (suffice it to say that my remarks of "he does that sometimes, no worries," did not go over so well).
my father is not southern-born but is learning fast, and there are not many accomplishments that he prides himself more than his barbeque recipes. one of dad's most requested recipes is his barbequed potatoes, which hubby requested for dinner during his visit. given hubby's digestive tract record lately, i should have played the role of "barbeque-potato nazi"--"NO POTATOES FOR YOU!!!" hindsight is twenty-twenty: hubby valiantly tried to eat the meal that my father had slow-cooked all afternoon, then the meal made its second appearance of the evening about a half-hour later in the living room.
in the midst of all of this, my parents are concerned that i'm too hard on hubby--i'm starting to think that i did my job as caregiver too well. he is content to sleep on the couch and have me bring him his meds, drinks, etc. when i started to tell him to get these items for himself, the protests made on hubby's behalf were stridant. today, i drove the entire distance from my parent's place to north carolina (5.5 hours on I-95 on the busiest travel day of the year)--hubby slept. we got back, i unloaded the car on my own and carried all of our bags up the stairs to our second story apartment--hubby laid down. i attempted to unpack and straighten up a bit (did i mention that everything that we moved from baltimore last wednesday is still chucked in our living room and guest room?)--hubby slept. this pattern continues to this very minute (i had to escape for a few minutes to preserve my sanity).
there are times when i am extremely thankful for hubby's outpatient transplant program, and times when i don't think that it's such a hot idea. right now, the latter is true. i wish that he was either inpatient at a hospital or that we were back in baltimore. he isn't exhibiting any negative symptoms, but the extreme fatigue really isn't supposed to present this late in the game, and it's scared me shitless. i have to wake him and remind him to take his meds on schedule, and to try and eat. on top of all of the housework and unpacking. and i go back to work full-time on tuesday. i feel like i imagine a new mom must feel leaving her child to go back to work for the first time after birth.
as much as they tried, my family didn't help much. my attempts to remind hubby that he "needs to be more self-sufficient, starting on tuesday, i'm not going to be around for a large chunk of the day" were met with, "oh, but he doesn't feel good! you need to take care of him!" the seed of doubt was planted and now i worry about whether i am being a total bitch to my husband right when he is feeling poorly.
happy fucking holidays.
give thanks
in light of the upcoming holiday and our upcoming discharge from the hopkins outpatient bone marrow transplant program, i would like to take a second to express thanks to the many people who have been reading this little corner of the web. just knowing that there are a lot of people out there in the 18-40 demographic who are going through this along with hubby and i has been such a powerful anchor for the two of us. as many of us know, there is not a large support community for young adult cancer patients and their families, so it was a truely awesome experience to find that there are a whole lot of us making up our own support group that spans several countries.
this is a bitch of a disease and sometimes things happen in life that just aren't fair. but i am so thankful for all of you and the support that you've shown.
some good news for a change
we have a rough couple of days ahead of us but it ends well. hubby has a bone marrow aspirate yesterday, surgery to have his i.v. catheter removed today, and his final (hopefully, final for his whole life) lumbar puncture and spinal tap wednesday morning. his new immune system got a bit of a test when we both got a cold last week, but he is healing quite nicely on his own (not even an otc decongestant!!) it was a little bit nerve-racking but great to see his immune system react like it should without any outside help.
wednesday afternoon, WE ARE DISCHARGED and move back to waldorf. from here on out, we'll only have to go to johns hopkins once a month, and hubby of course has weekly check-ins with his local oncologist, but it will be an easy schedule compared to what we've been doing.
thursday morning, if hubby feels up to it, we are headed to north carolina for thanksgiving. (if not, i stocked up on our own mini-thanksgiving dinner with a turkey breast and some fixins, although this will be my first time roasting meat of any kind, so we'll see how it goes).
next week, i go back to work full-time. i'm looking forward to getting back to a regular routine but it is going to be a BIG mental adjustment to go back. i just have this idea that going from this intensely medical environment back to the banalities of everyday life will take a large mental leap. hopefully, i will not fall into the crevasse.
real cancer, real lives
the seventh edition of
real cancer, real lives is up over at
nothing to say. please go and check it out, as most of the regulars are much better writers than i, and all have unique insights.
also, if you are interested in what you read and have something to say about the topic, please submit! you can submit blog posts
here.
in case you haven't seen me in a while
since this is the first major holiday that i will be spending with family since 2002, prepare yourself for some changes if you're one of those fringe relatives that i don't see that often.
1. the 45 pounds that i've gained since last february has given me a rather round and jolly look. yes, i'm aware that rapid weight gain is unhealthy--but hey, look at hubby, he's perfectly fine except for a random (to quote our doc) "genetic accident" that gave him leukemia. that treadmill's not looking so hot now that you know that your genes can randomly take you out--is it!?
what can i say, i eat when i'm stressed. suffice it to say, having the round and jolly look does not necessarily mean that one is actually round and jolly.
2. yes, hubby's doing better (other than the crippling fear that we both have about leaving baltimore and our medical team, rejection of the marrow, relapse, germs, graft-versus-host-disease, and shingles).
3. i drive fast and swear a lot more now than i used to. being up close and personal with my husband's mortality has given me somewhat of a nihilistic streak. i always DID want to be edgier.
inappropriate emotions...
...are a sign of many psychological disorders.
gram's breast cancer is a stage 2A, a little further along than previously thought, and she will need chemotherapy. she was asking me a lot of questions about the side effects, and i think that she's more than a little scared. i'm pissed off about being a semi-expert on something that no one deserves to know anything about.
in the same conversation, she relayed to me that in the small town where i grew up and she still lives, the gossip chain got twisted and she got a couple phone calls asking if i was the one who had cancer. i laughed out loud and thought that it was extremely amusing that cancer has overshadowed our family's lives to the point that even the backwater-town gossip hounds were getting the details mixed up.
last night, hubby got extremely nauseated after dinner for the third day in a row. i had made stirfry and added a little bit of cayenne to the pre-bottled sauce to add some flavor. when he got sick, i broke down and told him, "i'm so sorry that i made you sick...my cooking always makes you sick anymore, and i don't know what to do. i'm so sorry about the cayenne." i proceeded to cry for a good 20 minutes. all over a damn pinch of spice.
they say you can never go home again
the number one lady in my life, my gram, told me today that she was diagnosed with stage one breast cancer. she starts treatment on monday, with a lumpectomy and subsequent radiation.
i am taking some time off of writing to get my thoughts in order.
good night and take care,
amanda
normalcy? nah...
so hubby and i had our discharge class this morning, where the nurses go over a booklet about what to expect and do when we get home from baltimore. it was a little less than uplifting. some excerpts, as we understood them:
1) don't hang out with, or in the general vicinity of, children under the age of twelve. they are little, indiscriminate, germ-laden w.m.d's.
2) don't use the same hand towel as anyone else in your family. use paper towels whenever possible. in fact, you should think about buying stock in a local paper company, and go ahead and use a roll of bounty when you get out of the shower each day. remember, anything that you use more than once harbors germs, so if they invent single-use toothbrushes, razors, deodorants, etc., we expect you to be first in line.
3) you should always use condoms during sex, even if you are monogamous and disease-free. in fact, you might want to use more than one. and go ahead and slap a
biohazard sticker on your penis before you penetrate. never hurts to be too safe!
4) avoid sun exposure, as even a mild sunburn can trigger severe, explosive graft-versus-host-disease. don't go out during the day, wear at least spf 30, and forget about golfing or the beach. THAT'S RIGHT--THE SUN CAN KILL YOU!! AVOID THE SUN AT ALL COSTS!!
5) (related to #4) avoid garlic, wooden stakes to the heart, and crucifixes.
6) don't be downwind of a mexican alpaca on the 23rd of june.
7) wrap all movie seats, restaurant chairs, and mall benches in plastic wrap before being seated. if you have a vat of anti-bacterial gel with you, spray down the seat too. oh yeah, get in the habit of strapping a vat of that stuff on your back before you head out the door. what we want to emphasize is being careful.
is a regular life too much to ask for?
contradictions
my experience with cancer has changed me in many ways, both predictable and unforeseen.
i am strong and bad-ass. i am more sure of myself than i have ever been before. if i can handle everything that's been thrown at me since february, what's to worry about the mundane, everyday life? that's right...NOTHING.
but...i doubt myself everyday when it comes to caring for my husband. whenever he gets nausea or a headache (which have been coming fast and furious lately), there is a voice coming from deep inside that suggests that it was my fault that he got sick; that i must have not taken care of him the right way.
i am not scared of dying. i've been faced with mortality each time we filled out hospital paperwork that asked hubby to designate next-of-kin, each time one of the people we met at the clinic got really sick and then stopped coming, and when we filled out our advanced directives in case there was a Terri Schiavo-like situation. i know that when the time comes, i will have done my best to pack as many experiences into the time that i had, and will go with no regrets.
but...i am terrified every day of losing my husband, who is the only person on this earth who knows me wholly and completely. i can't imagine that there is another man out there who is such a good compliment to me.
i am a modern woman. i have been the breadwinner for the duration of our marriage. it's been my job that supplied us with the health insurance, base transfer, and paid leave that have allowed us to get through the transplant with as few bumps as possible. hubby followed me and my job, instead of the other way around.
but...i still try my best to be a happy homemaker for him. i've been busy expanding my limited cooking skills, cooking new and delicious high-calorie, gourmet dinners each night in an attempt to tempt him to eat when his appetite is waning. homemade chicken soup? scones for breakfast? 16-oz. steak with a homemade marsala wine-mushroom sauce? anything you want, dear!
what a rollercoaster ride this has been.
extra, extra special
tonight's question: what do you get as a christmas gift for the person who just beat cancer?
i want to get something very unique to show hubby just how much i love him and how glad i am that this is soon going to be behind us, but all of the stuff in the stores just seems material and...trite.
nothing seems special enough for him.
consequently, any suggestions would be greatly appreciated.
real cancer, real lives
the couple behind
cancer news watch and
too sexy for my hair have started a blog carnival for cancer patients, caregivers, survivors, and medical bloggers. in case this is a learning experience for you like it was for me, a blog carnival is a topic-specific e-zine that's hosted by a different website each week.
'cancer. it's not just an astrological sign anymore.' will be hosting the december 18th carnival, but i urge you to check it out before it hits here. also, there's instructions for submitting to the blog carnival, if you're into that sort of thing.
link is below.
real cancer, real lives
no easy answers
NOTE: hubby and i are respectful of all religious beliefs and appreciate all the prayers that have been sent our way. the following is my analysis of a spiritual conflict that we've experienced in the face of hubby's relapse.
--------------------------------------------
let me just begin by stating that neither of us are overtly religious. hubby and i currently do not belong to a church and have not attended regularly anytime in the past five years. hubby has deeper religious roots in his childhood than i do; his family upholds close contact (and almost perfect attendance) at the local united church of christ in the small town where we grew up. i, on the other hand, was baptized lutheran, briefly attended presbyterian during childhood, and took over sunday morning milking duty on the farm when i was 13 so that my mom and dad could go to (another presbyterian) church. after moving to north carolina, my family joined the local united methodist house of worship, in accordance with their apparent belief that the details aren't important as long as you're living to serve the Lord.
i have my own ideas and convictions about many of the subjects that are taught in sunday school, but have always been attempting to find a way to make my ideas fit someone else's system (much like the title character in
j. blume's "are you there, god? it's me, margaret"). a brief flirtation with unitarianism in college yielded no benefits as i read about the religion but never found a church to attend. i like my hubby's denomination (the u.c.c. seems to be more progressive than most other protestant sects), but i still don't really feel like i get anything out of going to church when we attend as visitors. i DO fervently believe in treating others as you would like to be treated, no matter what race, class, ethnicity, or sexual preference; doing one's best to take care of our planet and leaving as small of a footprint as possible; and being honest (some people would say to a fault).
this struggle to qualify my belief system with those of my family and peers has become increasingly difficult during our experience with leukemia. the first time that i sincerely questioned the presence of a higher power was the evening that hubby was admitted to the pediatric intensive care unit at the pittsburgh children's hospital in 2001. it was 10 pm, and i was alone with him in his regular hospital room when the medical team made the decision to admit him. after he was stabilized (and i spent 30 long minutes in the icu waiting area, feeling very young, vulnerable, and alone) the team told me that i could come in to see him. the usual feeling of relief was quickly replaced by dread as i saw about a dozen tiny bodies, some still in incubators, covered with wires, paddles, drip lines, and swaddled in enough medical tape to hold it all together. hubby was the oldest patient on the floor by at least 14 years (he was 19 at the time). the other kids were too young to even really have a concept of what was happening to them. most of them drifted in and out of consciousness, but those who were awake screamed bloody murder. i will never forget the sound of those screams. at that point, i was thankful that at least hubby was old enough to understand what was happening to him, and ENRAGED that someone, anyone, could let this happen to so many little kids. 'what kind of higher being,' i thought, 'would let this happen to little ones who come into this world with a clean slate?'
and so my religious ambivalence was forever crystallized by that one evening. the pediatric intensive care unit was the closest place to hell that i ever hope to be.
the anger that was formed that evening at the children's hospital still resurfaces occasionally, most notably when i try to think what kind of bad energy hubby or i might have inadvertently put into the world to warrant having leukemia twice before the age of 25.
lately, i've noticed that when many people engage in small talk about a cancer patient, the big guy (or gal) upstairs finds his way into the conversation pretty frequently. the comments range from 'this is all part of god's plan for you two,' to 'cancer is evil at work.' i definitely appreciate the sentiment expressed by those comments, as well as everyone's thoughts and prayers. however anyone wishes to send good energy our way, i will take it, i am NOT picky.
the comments themselves have started to rub me the wrong way a little bit. some people seem to use the 'plan' comment to invalidate the anger and sadness that hubby and i feel sometimes when we're dealing with everything, as in, 'everything will work out, this is god's plan for you.' cancer does NOT make anyone saintly or mean that the afflicted are part of a higher calling. this is a horrible, terrible disease--stop telling me that i should be okay with it 'cause it's part of a plan!!
and while i definitely agree that if there is a devil, he would cause suffering similar to that of a nice strong round of chemotherapy, the 'cancer is evil' comment is loaded. most of the people in the bible who had evil fall on them did something to deserve it (jesus of course being the notable exception). and i'm sure not suggesting that hubby is christ-like. but if someone makes that comment, are they trying to insinuate that perhaps hubby and i are getting punished for our sins a bit earlier than most people do?
the anti-stress gift from my coworkers
