Archive for the 'best family/friends ever' Category

Aug 29 2011

writerly triumphs, upcoming cancer fears

I’ve been nearly-steadily working on getting my creative well refilled after beating back death (again, from a fiercer battle this year than last), so the good news progress on that front is:

I made it to a few parts of ArmadilloCon this weekend. Friday was a disaster and life lesson two-by-four all in one; I tried to essentially go by myself (with walker strapped to wheelchair), and didn’t realize just how hard it would be to push myself around, especially since the hotel had far more carpet than I’d expected (I’d remembered large expanses of tile, which there were in main areas, but not where the panels were held).  I managed to make it through one panel simply due to stubbornness of will, then found a friend who very kindly took me home.  At home I cried in frustration and felt nearly sick from the exhaustion, and bitter about not getting to do any of the things I want to do, and upset that my “last hurrah” before surgery was such a bust.

Waking up Saturday in a better mood, I spent most of the day napping and late afternoon my brain kicked in, and we worked out a solution where my helper used the front carrier to strap on Wednesday (who was apparently a big hit at her first con) and go with me to push me to panels.  We arrived late enough that I was only able to attend two more panels, but at that point it was the principle of the thing and I saw friends and took notes and went to panels just like a real convention, my first since this time last year.  Psychologically it was a big success, and of course I’m exhausted and sore and spent most of the day in bed and will spend most of tomorrow resting (with maybe a bit more movement and PT exercises that I won’t be able to do right after Tuesday) but quite worth the effort and I’m grateful to my Mom for providing the badge fee and my helper and another two friends for providing the rides to get me to and from.

I did a “create first lines” exercise with my writing group that was fun for me and seemed so for the others who participated.  I even wrote a couple that tickled the glimmer of possibly an idea for story, maybe, somewhere in there.  So that was a success as far as I’m concerned.

One of the next steps as I see it is to get back in the habit of the “send stories out — collect rejections — send them back out” routine I’d been doing so well at last year, so I asked my writing group which stories of mine that I’ve previously submitted for critique came first to mind as ones they’d like to see back out circulating.  Two of the ones they suggested are ones that have been out there already for months, so I sent queries out on those two, and at least one of the others they mentioned doesn’t really need further editing at least at the moment, so I am planning to find a market and send it out tonight (unless, of course, I fall asleep over the keyboard first as I sometimes still do).

I may have come to a decision about the novel I’ve been slogging over for years, which I think deserves its own blog post as possibly an interesting writer-process blog entry, and I’ve identified two characters from other stories that I think will be the easiest to start back on trying to write when I finally start generating new creative content.  I even have great encouraging words on those from that same writer’s group.

And then the anger and frustration parts:

I’m just now starting to get to where I can do more than one or two things a day without being wiped out.  I mean, there’s no way even a couple of weeks ago that I would have been able to try again on the con attendance like I did this Friday and Saturday.  I can’t get a straight answer about how my doctor is going to handle my pain med regimen when I go back into the hospital for surgery on Tuesday and it’s been working so I’d really like to not have to go backward on that end of things.  I’m angry.  I make the joke about having to get three mastectomies for two breasts but it’s not really funny, except in the life irony sort of way, it sucks. I trust my doctors this time but I’m still so scared.  So scared.  And admitting that in front of the world and everyone is hard, even if it’s a no-brainer, because I’m also the strong, beautiful, determined, fighter, role-model, hero, STILL ALIVE person that people talk about in the comments you leave here and tell me elsewhere.

But this is so hard.  So very very hard.  And scary, and angry-making, and I don’t want to do it even though it’s right and necessary to do.  And I wish I had more time to heal and enjoy the energy to write and help The Teen with his homework and feed Wednesday rice cereal messy-o-meals because on Tuesday I have to slog back from the edge of the abyss AGAIN in order to be able to do those things and I won’t be able to right away, and what if it takes long enough to heal and my baby girl grows fast enough that I’ll never get to safely hold her again because she’ll be too heavy for my arms to safely hold?

And I can heal, and I will, and I’ll even try to write about it so you know what it’s like as best as you can from reading about it.  But here I am, bloated enough from bed-rest and long-term steroid meds that I don’t look like me in the mirror anymore, emotionally naked, and the fear is so strong that writing it is the only thing that makes it smaller.

Caging it in words to show for you like a zoo exhibit gives me some iota of illusory control over the process, so here I am, and here it is:  I go in for double mastectomies this Tuesday, at 1 pm CDT, surgery expected to last 3 hours.  On the right side they will also take several lymph nodes along with the breast, and the remaining cancerous mass that has shrunk through chemotherapy to 2 cm from its previously baseball-sized visible lump under my arm.  The left side will be cleaning out the far-too-much breast tissue they left from last year’s mastectomy, though they don’t expect to have to remove any more lymph nodes.  They will be removing every bit of breast tissue they can find on both sides.  They do not expect to have to remove muscle, so send good energy that way if you have it to spare, as I would be left with lifelong arthritic-like symptoms if they have to take any of the muscle in the area, and the lymphedema brings enough of its own long-term side effects that I’d really prefer no more added to the mix.  They expect, given how close this is happening to the recent chemotherapy and other factors, that my healing time will be double the normal expected rate –so at least 12 weeks of active healing — and that doesn’t count the months of PT to get as much back of normal movement and function in the area as possible.  And that there will be at least one night spent in the hospital, but possibly more depending on how my body responds; so soon after a 9-week stay in the hospital, that in itself seems discouraging.

I have no idea how much, if any, it will set back the progress I’ve made in getting back my writing creativity, but I expect at least some.  I may have a baby 3-pound netbook, but I recall from last year even that was too heavy to manipulate for the first several days after surgery.  So expect a pause in blogging, though you might see me update on Facebook since I can do that from my phone.  I have a voice recorder I’m going to try to make sure is functional tomorrow as part of packing and prepping for going back in, in case I do manage to snag writing ideas out of this mess.

So the positive thoughts to send my way are: all breast tissue gone, no muscle removed, and speedy healing with no complications.  I’d really like some time and space to live this beautiful life with you beautiful people that surround me, and enough pain-less (not naive enough to say painless) functionality to enjoy it as fully as I know how.  And that’s pretty damn full — there’s nothing like two fierce battles with death to enhance the joy of living life.

4 responses so far

Aug 22 2011

From Death Into Life Through Truth (second verse, harder than the first)

We all know there are different ways to tell the truth.  I recall vividly a conversation with my parents when I was quite young — no more than six years old or so — where I had been caught in some lie (probably a minor one, don’t remember those sorts of details from the event), and they sat me down and had one of those Serious Talks about trust and the breaking thereof and why truthtelling was so important.  I don’t know what particular magic combination of words they said and my own personality were at work that evening, but it resulted in me not uttering a known or intentional lie for the next ten years, literally.

I was a strange child.

***

You have choices, even with bad doctors, but with the good ones, and the fantastic ones as well.  You have rights, as a patient, to know your diagnosis, to see your health paperwork, to have the results explained to you. There are ways, and then there are ways, of revealing the facts, of telling the truth of what is happening to you in a serious medical situation.  The finest ones know that one’s emotional state does matter in the battle for life, and the mind matters in affecting your matter.   The great ones will choose carefully how they reveal the truth of what is happening to you, all the while giving you the option to choose for yourself how and how much and when to know, or know more.

I have some of the best doctors I’ve ever heard of, and I know it’s part of why I’m still here writing this entry.

I am so very thankful of how some of the facts were revealed, and when.  This battle would have been so much harder had I known the full details and descriptions of everything going on from the very beginning, while trying to live through the worst of the pain that was filling every moment.  Meaning, when I went into the hospital the first time this year, after we’d done the C-section and could do more scans and they could find out more of what was happening inside me, they came to my room and explained what was wrong.

They told us the breast cancer had come back, confirmed that the very visible baseball-sized lump that prevented me from putting my right arm all the way down was indeed another tumor.  They explained that the previous diagnosis from last year had been incorrect, that it was an estrogen-receptor-positive cancer, and so pregnancy hormones had exacerbated the situation.  That it had metastasized.  And where: into the hip, and they gave the gory details on that since the pain from that one was what had driven me into the hospital at a 10+ agony level (over 8 cm large, partially in soft tissue and partially into the bone, wrapped around the sciatic nerve); and into the spine, where a tumor filled most of the the bony process of T12; and into other bones like the ribs; and into the liver; and into the lungs. And later on, discovering the T7 tumor pressing directly against the spinal cord and causing the left leg paralyzation and second hospital trip (this time in an ambulance) and two-month stay and extra radiation (not usually done with chemo — and another story). All the facts, ma’am.

And so treatment was discussed.  Such an aggressive cancer required aggressive treatment, and the facts that I was young and had otherwise a healthy immune system (and the special medical snowflake aspect we discovered later but wasn’t known then) would help in fighting it, and in dealing with the side effects of the aggressive treatment.  And so it did, and you’ll get that part of the story too, as we go along in later blog posts.  We didn’t spend much time in that first conversation, with my spouse and parents gathered around, in discussing exact cancer stage and type, or prognosis lengths, or too many treatment details other than the basics of what we’d be doing to fight it.  I kept asking questions; Dr. Carlos Rubin de Celis kept answering them.  He didn’t shy away from the tears as I asked, or try to shut me down as a layperson unable to understand, or get impatient when I repeated a question I’d already asked before while trying to understand better.  Every room visit of his I’d have a page full of questions, and he never acted rushed in spending time answering them.  And still, his skill at how he gave the facts of what was happening to my body throughout this process did not become fully apparent until a week ago, when I attended the appointment where we discussed the “new baseline” from the latest scans.  From where we began, to where we now are after 34 radiation sessions and 6 chemotherapy rounds and endless experimentation with pain management and two months in the hospital.  Basically, where we go from here.

And I learned fully why I’d overheard some of the nurses referring to me as a terminal cancer patient, earlier on in the hospital stay.

Hip: from where it began (described above), to now completely gone.  I got to see the before/after picture of this one, it now looks identical to the other hip, and completely normal. (On the surface; one can’t see as easily on the basic picture the many many little holes the tumor left behind in the bones that we will be treating for the next two years at least — but that’s also another story for a later post.)

T7: completely clean.  (Also got to see this “before and after” picture.)  Massive residual pain from damaged areas that will heal slowly, but will heal.  (Already I need slightly less pain meds than I did when I got home, and that will continue to decrease.)  The area around the spinal canal is clean all the way up.

Spine: there had been signs of cancer is essentially every other vertebra throughout the lumbar and thoracic region.  I asked for and was shown these pictures when I was ready (around the middle of treatments), and the light and dark areas alternated, with light being signs of cancer, in an almost regular pattern.  Now, all dark and clean.

T12:  Presumed clean.  Since this was entirely within the bone it’s a bit harder to confirm without a biopsy, and both the doctor and myself are hesitant to do that; what if we drill into the one area that is solidly keeping that vertebra strong enough to heal properly?  So we’re going by monitoring my pain and mobility and in how it compares to the others in the scans, since it was one of the three areas receiving direct radiation treatments.  Dark and no more painful than anywhere else that hurts, we’re calling it clean.

Ribs/sternum: clean.

Lungs: From a “paint-splattered” start with small spots scattered all over, to nothing visible. Clean.

Breasts: from the original visible underarm large lump to a 2.4 cm mass that can’t even be easily palpated.  The surgical oncologist,  Dr. Cherico (a quirky guy who’s been in the business since before port catheters were invented, wears cowboy boots to work, and apparently plays country music during surgeries) laughed when I said I want all the breast tissue gone if he has to vacuum it out, and assured me that he’ll be removing all the breast tissue as well as as many lymph nodes as needed.  He also doesn’t expect to have to remove muscle, thankfully (though if he finds differently on the operating table he’ll do what’s needed for clean margins) and answered my questions fully and carefully: a fine match for Dr. Rubin de Celis on my oncologist team. But the mastectomies are yet another post topic.

Liver:   Here is the part that inspired the tone of this post.  The only remaining anything that can be found after this long, painful, and scary trial are four very faint spots on the liver, none larger than an inch in diameter and easily missed if you weren’t looking for them.  But from where it began…well, the only colorful descriptor I’d heard before was that my liver when I came into the hospital looked “like swiss cheese”; last week I found out that what that little phrase meant was that the original scans showed tumors that were too numerous to count, several of them up to softball-sized diameters.   All I could think was “where was the liver in all of that?  How was there anything to grow back? No wonder they treated me so nicely, they weren’t expecting me to leave the hospital after I’d checked in with all that.”

And that type of truthful description of what was happening inside me was exactly what I didn’t need to hear, back when this all started.  The fear, the pain, the terrible nature of what I was facing was already so great, to have heard that would have brought the despair to a level I’m not so sure I could have come back from.  I’m sure if I’d asked to see all the pictures from the beginning they would have shown them to me, and explained whatever I’d asked about what I was seeing.  But instead we got a truthful explanation, I didn’t see pictures until there was actual progress through the treatment, and I didn’t have to face night after night of nightmarish images parading through my head of disintegrating organs and bones made even more realistic by the actual images of that happening.  (Sort of like the difference between reading a book and watching its movie; the book frees the imagination to wander all over a landscape, the movie tends to lock in one’s imagery to a set picture that is terribly hard to change to something different once you’ve seen it.)

So, the conclusion: from terminal level, how-is-my-body-still-together metastasis, I have 5 spots left (all an inch or less in size), one of which will be gone in less than two weeks, and the other four which could still conceivably be those softball-sized tumors finishing dying (the scans were taken a little over two weeks after the last chemo treatment).

This is what my doctor calls an emphatic success.  We will continue to scan every two months. I’ll be put on anti-estrogen medicine.  and if the worst happens and those spots decide to grow instead of fade away, my doctor casually and confidently states that “he has plenty more tricks up his sleeve” that we haven’t even begun to try.

Me vs. cancer = I win.  Again.

8 responses so far

Jul 18 2011

Crazy Hospital Happenings

You know it’s finally time to get out of here when the new admittee across the hall is not only ill, but suffering from some sort of dementia that is causing him to repeatedly yell “help!! help!! get out of my house!!” Which means the rest of us get late meds and short shrift as the poor overworked nurses have to deal with the crazy person they didn’t even get warned about.

Thankfully, it looks like discharge date might be sometime Wednesday.  We’ve got a trial-period live-in help, a pain regimen that is working CLOSE to what we want and may very likely work better once it’s more under my control and not dementia-distracted nurse control, and I’m working on my PT to rebuild my muscular system to help protect my poor hole-riddled skeletal system.

I’m sure you’re all anticipating the story of the saga of how I switched from a near-“terminal” cancer patient to one who is riding out Wednesday with a good chance of years’ more survival, and I think writing about it in bits and pieces will be good for me and my continued healing.  Along those lines, please any of you feel free to ask questions about particular things you’re interesting in hearing more about from the last two months, it will help me get some focus since, my goodness, there’s so very much to write about.

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Jul 16 2011

Rub the Head for Health

While I haven’t developed too many ritual-based routines during this second go-round at cancer battling, since I had to lose my hair at least one has developed.  I think it may have started between me and my son, The Kid (who should probably be renamed now that he’s The Teen, I’ll ask him), but I find it amusing that even my oncologist is now doing it since as he said, “hey it’s working so far”.  So when you’re saying goodbye after a visit with me, don’t forget to give my bald head a quick rub for good health!  Emotional adjustments like these seem to matter more than one might think on the healing road…

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Jul 06 2011

When babies attack

Not really, the baby is great!  I’ve been promising a baby post, however, and so I figured that title was a good attention-getter.

We have been incredibly fortunate to get a baby with a personality that nearly perfectly compliments the other much more difficult circumstances we’ve been having to deal with, especially the cancer.  In her first three months, she has been consistently the calmest, most content, peaceful, quiet, and happy baby I’ve ever met.  I’d write myself off as one of those parents who can say no wrong about their darling little angels, except this feedback is the same that we consistently receive from everyone else who meets her as well.  Not to mention that she’s an amazingly gorgeous baby; the nurses all find excuses to visit when she’s here.  Even the wonderful and skilled hospital pediatrician in charge of our girl’s first few days of life, Dr. Kent, found reasons to stop by and get some visit time outside of the necessary check-ups.  (She was also one of the first people to encourage me to keep blogging about my experiences, and I thank her for that!)

It’s only been in the last couple of weeks that the baby has even started to have fussy periods regularly as her brain develops more complex needs for expression before the rest of her can keep up.  This is a fascinating process to watch, even if I’m not getting to see it every day like I’d prefer.

We couldn’t have survived the last month of taking care of her without my awesome mother, who’s been carting her home each week, making sure her needs are met, and bringing her back each week for visit and assistance time.  There aren’t thank-yous large enough to cover what Mom has been doing for us on this, but try to imagine them anyway.  Mom confirms we have the world’s best behaved baby, and is having a fun though exhausting time.  It’s also hilarious to look at old pictures of me and see how much she looks like I did at her age — there are a few pics where we look almost like twins!

As we get closer to me being able to go home (and more on that in other posts), we’re looking for more full-time/live-in help for both me and Wednesday (our daughter) and have posted an ad to that effect various places, so if you know someone in the Austin area good with cancer patients, infants, meal prep, errands, and other such goodness, send them a notice our way.  And to wrap up, here’s the story of Wednesday’s nickname (and middle name) for your entertainment…

While the little larvae was growing inside me (and unfortunately triggering the estrogen surge that potentially caused the metastatic breast cancer — it had been mis-diagnosed as non-estrogen-receptor positive tumors last year), we wanted to call it something while we didn’t have an actual name picked out.  As far as television families go, The (original) Addams Family is frankly one of the most loving and well-adjusted ones I’ve seen depicted (seriously, think about it for a few minutes and you’ll see my point — feel free to discuss it in the comments!)  So we figured we’d call it after whichever Addams kid it was gendered until we had time to find a better name, and so Wednesday she became once we knew it was a girl.

Around the sixth month or so, my husband mentioned to me that he actually sort of liked Wednesday as a name.  I laughed and agreed that I liked it too, but said that it was probably just a bit too odd to hang on her as a first name.  I pointed out that we could totally keep it as a nickname, or even a middle name, and we continued slowly winnowing down a list of other more suitable first names. (We thought we had three more months to decide at that point, of course, so weren’t in much of a hurry.)

Thankfully by the time things had gotten really bad pain-wise and we suspected something besides being pregnant was wrong with me, we had narrowed the list of possible actual names to a manageable page of choices.  We were still quite irrationally attached to Wednesday as a name, though, and so I suggested we test out the names to see how well they fit with “Wednesday” as a middle name (since the option to keep it as a nickname was always available regardless).

Then the pain got so bad that we had no choice but to take me into the hospital (the first time around) and find out what was wrong. (At this point we still mostly thought it was something structural since it was so much more painful than the first round of cancer had been and since “hip pain” happens to many pregnant women — though I knew in my heart that hip pain that bad had to be something else, or at least something more than just pregnant complaints.)

They did the MRI and found the hip tumor (along with several of the other tumors — they found more later with other scans once she was birthed) and suddenly the message changed from “we’ll have to wait a couple more weeks to term” to “we have to get this baby out and deal with these tumors”.  Since she was already at 36 weeks she was viable and we could reasonably hope that she’d developed enough that she wouldn’t have too many health problems being a month early.  That Tuesday evening we spent discussing the options of vaginal vs c-section birth given the incomplete information we had, and were going to wait until the morning to consult with the oncologist assigned to the case before making a final decision. (Dr. Carlos Rubin de Celis, best oncologist ever ever ever, seriously if you’re in the Austin area and need one he is amazingly skilled as well as compassionate, if I had to move away I would commute back to keep him as my doctor I’m that pleased with his abilities.)

At ten minutes to midnight, I coughed twice and my water broke, gushing in a veritable flood for what felt like half an hour as our darling daughter chose to help our decision along herself and no more of this dilly-dallying about.  And at 7:08 am, on a Wednesday, she was born.  Given that, and all the rest of the events, we felt that was the perfect middle name for her and quickly picked from the last three choices we’d narrowed down for the rest of her name.

Several family members and friends still call her by that, which we have no problem with as it is indeed one of her names, and we’re fond of the story behind it.  When she gets old enough she’ll be perfectly capable of expressing her own preferences in that regard.  Given her mouthful of a moniker, she has over half-a-dozen options for names and nicknames she can go by and I’m looking forward to seeing how she makes (and changes) that decision throughout her developmental years, as I believe it’s good for a kid to have a name they can get creative with in self-identity.  We also went with the “Nielsen Hayden” option of two un-hyphenated last names, and both the birth certificate and the SSA office did it correctly, surprisingly enough!

She was crying with full-powered lungs as she was removed from the uterus by c-section, and had only a bit of jaundice to deal with for 1.33 days while she was with me in the hospital, and is otherwise one of the healthiest, happiest, and prettiest babies you’ll meet.  I look forward daily to seeing how we’ll change each other’s lives by our mutual existences.

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Jun 30 2011

Despair’s Siren

It’s been so long, and so much has happened between last post and this one, that the temptation is to give up telling the story.  Despair’s temptation is always that siren call, to give up the fight, give up the effort, just…stop.  It seems so much easier.  To go backward and tell the stories, the trials, the information that feels like it needs to be told but takes so much effort to elaborate (emotionally and energetically and other words starting with “e”)…well, it feels easier to just let the stories slide into forgetful memory.  To move forward as if the last couple of months haven’t changed everything.  To not move at all — to let the darkness of closed eyes become the all of one’s existence.

That isn’t the right description, however.  There is so much to tell, and tale, and teach, and talk about of this cancer process as well as so much else that surpasses mere survival, that going backward to tell tales becomes going forward into living.  As a writer at the beginning of her career, still, frustratingly so thanks to so many health and other set-backs over the past few years, despair trickles even here.  The messages from other well-meaning loved ones ring the same again and again:  you can’t worry about that now, your health must be your focus, healing your body, fighting the cancer; all the other efforts drain energy and need to happen later, once you know you’re still here to fight those fights.

And in many senses, that’s so very true.  The emotional trials have been so much worse this time around that it tempts despair’s presence to even come close to articulating the feelings involved.  It’s been both infinitely more and infinitely less easy to emotionally survive this round of cancer, for a variety of reasons — many of which I’ll probably write about, many of which are still ongoing, many of which I’ll lose to the sands of time or vagaries of memory fog we all encounter.

But as a writer, at the beginning of her career, still, and still fiercely dedicated to succeeding at that and so many other of my (both short and longer-term) goals, surviving cancer can’t be all of it.  Simple survival can’t ever be all you do, to be human.  Life is ever so much more than just getting through the day, whether you’re a shut-in with only internet friends or a best-selling dynamo or a physics genius or just one of the many solid people that fill the world each day with the simple things they do for others as well as themselves.

I close my eyes, and there is the stasis, awaiting.  The despair, regardless of what good news arrives daily, that the dreams are dead, the goals are withered, that the blackness will be all that remains.  That the stasis reality is the real one, and we fill our lives with the illusions of the rest; that reaching out to others will always result in not…quite…touching.  That I will float in that black and so will all the rest of you, islands lost in our seas of aloneness.

But as a writer, at the beginning of her career, still, every word I type changes that reality, moves that perception into something else, changes despair into hope.  Each complete breath can be as a person; and as a mother; and as a lover; and as a friend; and as a writer.  There is no way to illuminate the blackness that I know of, except by deciding to do.

And the feeling of futility is great, often, when making that decision, because there is so much, so very much to do daily just to survive, to keep breathing, not even counting all the other goals one might want to set for oneself.  Even with the enormity of the support group I have surrounding me, cheering me on, encouraging me to go and do and live…each new breath is so very hard to believe matters in the world, matters to others, matters at all.

It’s like creating a novel:  if I look at it as the entirety of what it is, it’s easier to never get started, the complexity and intricacy and fullness are overwhelming.  So I shall attempt to break it down into manageable pieces, bite-sized chunks, little posts like this one that shine lights of understanding onto pieces of the whole, in the hopes that one or more of those pieces will reach you, Fearless Reader, and touch something within your brain, your psyche, your soul, your selfness, enough that you want to pass it on to another, who will turn and share with another reaching traveler on this spinning ball of beautiful and terrible dirt we inhabit.

And whether that contact results in the culmination of my goals as a writer, lover, or mother, it will add to the strength to keep breathing as a person.  Because the struggle to live, just survive, is itself fierce and fragile, for all of us from ants to assholes.  The kinesthetics of contact, touching each other, is the first and most important sensory experience of our lives from the moment we become aware we’re enveloped in the womb.  The tragedy of so many of us leaving this world bereft of that same all-encompassing embracing is part of what is worth combating while we exist.

Despair

–noun

1.loss of hope; hopelessness.
2.someone or something that causes hopelessness
–verb (used without object)

3.to losegive up, or be without hope (often followed by of ):to despair of humanity.
–verb (used with object)
4.Obsolete . to give up hope of.
Origin:
1275–1325; Middle English despeir (noun), despeiren (v.) < Anglo-French despeir, Old French despoir (noun), despeir-, tonic stemof desperer (v.) < Latin dēspērāre to be without hope, equivalentto dē- de- + spērāre to hope, derivative of spēs hope
Hope
–noun

1.The feeling that what is wanted can be had or that events will turn out for the best: to give hope.
2.a particular instance of this feeling
3.grounds for this feeling in a particular instance
4.a person or thing in which expectations are centered:
5.something that is hoped for
–verb (used with object)
6.to look forward to with desire and reasonable confidence.
7.to believe, desire, or trust
–verb (used without object)
8.to feel that something desired may happen
9.Archaic . to place trust; rely (usually followed by in ).
—Idiom
10. to continue to hope, although the outlook does not warrant it
Origin:
before 900; (noun) Middle English; Old English hopa; cognate with Dutch hoop, German Hoffe; (v.) Middle English hopen, Old English hopian

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May 09 2011

My First Mother’s Day

Well here’s a quick mostly-non-cancer post before we get back to the regular news…

This weekend was my first official Mother’s Day celebration, as last year we hadn’t received custody of The Teen (until my birthday about a month from now). It was certainly bittersweet, given the whole dealing with cancer thing affecting my ability to be mobile and do things, but the sweet won out even given the emotional downness and complexity of this time. Nathan’s mother and stepfather were in town visiting and I think that helped the guys remember to celebrate Mother’s Day (though I could be wrong and they would have remembered anyway).

I received the very thoughtful and lovely gift of silky lounging robes, four of them I believe (might have miscounted, could be five). Since I’ll be heading into chemotherapy land, which is unknown territory impact-wise but likely to affect my energy levels from day to day such that lounging will be most all I’m good for some days, it’s a useful gift. But they’re also bright and vibrantly patterned and silky to the touch, so they’re a feel-good gift as well. I also like having the baby get to be near things that feel nice to the touch, so added bonus there. All in all a much more well-rounded and thoughtful gift than I was expecting (since I wasn’t actually expecting much at all). I love my family!

I also got a framed painting that Nathan’s stepfather did of The Baby which is fabulous (Pat Cardiff is a great artist); my mom now wants to commission one from him of the baby plus me, so we’ll see if he’s interested in taking that on. And a funny Mother’s Day card from The Teen. I didn’t get to spend much time with Nathan on Sunday, as he was doing his own thing most of the day, but we got to go out Saturday night and shake booty for our date-night which is always nice. (Well, I watched my pretty man dance while I stood in place with my cane and wiggled my butt in-between sitting spells, but we modify as we need and do what we can to still have fun during all of this — and I think we’re succeeding better than most others would at keeping some semblance of “normal” existence.)

Nathan’s folks had to leave early-early Sunday morning, but my mom came down later Sunday and we let The Teen stay up a bit late with us to watch all three Sherlock episodes (which my mom hadn’t seen) with friends Andrea and Robert, which was a good and fun shared low-impact activity. Since I’ve been having massive hip instability and extra pain the last few days low-key was a good key to bring in the weekend on.

The baby is only .5 inches longer than at birth, but has gone from a birthweight of 5lbs 14 ounces to 8 lbs 12 ounces in a month, thus reaching what probably would have been her birthweight if she’d gone to term. I don’t mind the smaller package, especially since we escaped any of the health problems associated with pre-term babies — it extends the time I can pick her up and carry her around. She continues to be the most amicable baby it has been my pleasure to know, not fussing unless there’s a reason for it (food, diaper, comfort) and calming down rapidly when she does get fussy. She also is mostly fitting her sleep schedule to mine, as much as is possible I think, which is another huge help. Yay for easy babies! Although speaking of, she’s fussing now, so this concludes your family post for the day.

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Apr 09 2011

Big News; Bad News; Baby News

This blog will be resuming, probably this week. There’s a lot to write about, most of it scary and not-good, unfortunately. But the good news first:

We have a new daughter! She was born by c-section at 36 weeks, so about a month early (counting months in 4-week intervals). She had no major negative side-effects from the early arrival, and is just about perfect in every way that we need both now and in the weeks and months coming up. There is one superpower evident already, as even people who don’t like babies think she’s sweet and adorable. She is the best-tempered baby I have ever seen (and I’m not just saying that because I birthed her), so far only crying when there is an obvious reason to be upset (dirty diaper, hungry belly, cold). She was born on 3/30/11 and passed her first week of weight loss and back into the gaining zone while still in the hospital, weighing more now than she did at birth (which was 5 lbs 14 ounces). She came out a full-length baby at 19 1/4 inches long, so it’s quite likely she’ll take after my husband’s lean and long side of the family. We’ve been having fun looking at my own baby pictures as there is a strong resemblance between how I looked like then and how she looks now.

We did not stay in the hospital for nearly two weeks because of the pregnancy and childbirth, however. (Bad News Alert) I have cancer again. The breast cancer has metastasized (yes, even though there were no signs of metastasis last year) and is in much more scary parts of the body now. This is also the source of the extreme and excruciating pain that sent me into the hospital two weeks ago. At least we know why the other treatments weren’t working to take away the pain, and we have a plan of action to start working on this new phase.

So stay tuned to this website and blog for more posts detailing what we’ve learned in the last couple of weeks, as well as more details about all parts of the new cancer experience and of course, baby news!

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Mar 15 2011

random fetal (and host mother) update

Would have been more logical to be doing these along the way, but that’s massive pain and no sleep for you — enemy of logic.

Last ultrasound was today. The baby is still a girl, and still growing normally, in the 64th percentile at 5 pounds 5 ounces and 34 weeks (6 weeks to go, due date still on or around 4/28/11). Her head has dropped low enough in the pelvis the OB couldn’t get an accurate measurement of that part, but the rest is normal, including amniotic fluid and placenta positioning. Otherwise she’s already filling up the available space and is much more chubby-baby round than the last ultrasound. She’s also just as active as she’s been since the 4th month — if fetal activity is any indication of later energy levels, we’ll have a dancer or other athlete for sure.

This was worth double-checking on because I as the host have lost 8 pounds in 4 weeks. (Due to the massive stress from the pain and loss of sleep.) I don’t think I’ve ever lost weight that quickly when non-pregnant (though it’s true I’ve never been one for dieting either). I’m now on a high-everything diet — high fat, high carbs, high protein. Basically as much food as we can cram into me, which is complicated by the fact that excessive pain makes me not want to eat. The OB remarked with amusement that it’s the opposite of the advice he normally has to give expectant mothers at this stage who are usually gaining more weight than necessary.

The hip pain looked as if it might improve as of a couple of weeks ago, but this past week has brought a fresh hell as one of the nerves went from agitated to actually pinched. I’ve never not had a reflex response before (none in the right ankle 7 days ago, none in both ankles as of 2 days ago). It’s rather disconcerting to watch/not-feel. My sleep duration had been holding steadily at 1.5 to 2 hours at a time, up until this past week where it dropped back down to 30 minutes-1.25 hours at a time. I also stopped being able to sleep on either side, so spent a frantic few nights getting no real sleep at all.

I have to go back in for an extended glucose test including fasting because my original reading was off. I can’t imagine why — you mean a diet of no sleep and excruciating constant pain throws off other body systems too? Go figure. This is complicated by the fact that the aforementioned issues make it so if I go longer than 4 hours without eating SOMEthing, I throw up. I’m just going to have to wait for a relatively low-pain day and do my best, but an 11-hour fast sounds really daunting.

My blood pressure is fine. So that’s good, anyway. And really, if the hip issue wasn’t happening, I’d barely notice the pregnancy. She’s a good alien parasite, all around.

A fresh session this week with the PT took the edge off the hammering agony, and I tried out an experiment last night sleeping semi-propped up with pillows immobilizing my legs and hips in as aligned a position as possible. This resulted in 4 sleep sessions of an hour or longer each, which is a vast improvement and why you’re getting a blog entry today! Hopefully this will continue to work, I don’t like sleeping in that position but I do like sleeping, so that’s what I get for now.

After discussing options with the OB we are trying a referral to one more pain specialist who might be more willing to work with pregnant women, and keeping me on the pain meds for now since that’s the only way I get to fall asleep (or to do much of anything else except sit around and cry). We discussed how to manage the baby’s needs if I have to stay on pain meds through to birthing, though obviously if we find something else that works I’ll go off them ahead of time. We also discussed trying melatonin instead of a prescribed sleep medication to see if that will help sleep duration at all. Since there’s no guarantee that the scrip-meds will improve sleep duration significantly so I decided it wasn’t worth the risk at this time. This OB doesn’t do water births which is the most recommended method for this hip/pelvic condition, so we’ll be researching to see if we have affordable options along these lines elsewhere.

Still no name picked out, Nathan is working through the long-list to categorize his preferences, and then we’ll winnow down from there. I suspect by this weekend we’ll have at least a short-list to work from. We’ve had several votes to keep her fetal name (“Wednesday”) as a middle name so that’s under strong consideration, hehe. We want to do something similar to the Nielsen Haydens for the last name and give her both of ours (non-hyphenated). Order of last names will be determined by what sounds best with the rest of the name, of course.

Got a very nice compliment from a friend, that in her opinion of all the friends she had that were or had recently bred, we were the only couple she was sure wouldn’t totally screw up our child. Yay vote of confidence!

So that’s the State of the Impending Baby. Most of my day is spent in pain management, but on good days like today I can get two or even three things done! Today’s chores include breakfast-making, OB appt (and other errands), and grocery shopping. Right now I’m having to be chauffeured around since the pinched nerve makes it fairly unsafe for me to drive. This is no more fun a limitation than it was last year when I was sick. Oh, and 9 more days until my not-dead anniversary!

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Feb 26 2011

Blog quasi-hiatus

I am not online consistently at the moment, due to a pregnancy complication (massive hip pain and misalignment) that is giving me an ugly mix of sleep deprivation and constant pain. This combination has achieved what cancer or pregnancy hormones couldn’t achieve, which is temporarily stop the flow of words written. I’m hoping the physical therapy will help this improve, and I can get back to writing and blogging, but figured you lovely and fearless readers deserved to know what was up.

If I can I might try to do some shorter, more personal posts about various life stuff, including the many ways pregnancy is Not Like cancer. But right now just dealing with the hip issue is top priority, so have patience and I will be back again soon, regardless.

For anyone who is interested in helping out with baby-things acquisition (or who has no-longer usable baby things from a recent new human themselves), here is our sharable Google Document where we’ve compiled a wish list and continue to update it as we receive new gifts from people. Just make sure to let us know if you’ve shipped or are planning to deliver a gift so we can keep the list current and not have too many duplicates!

Baby Stuff Wish List

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