July 12, 2008

Tony Snow 1955-2008

Man, this makes me sad. In that, I actually welled up upon hearing of the passing of a person I didn't know---and that's rare.

Mr. Snow was a classy, well-spoken man. I was not the biggest viewer of his, while he was hosting Fox News Sunday and as I never listen to Limbaugh, I hadn't ever heard him sub for the fat man. But I knew who he was and was very happy he had decided to use his communications skills to help out an administration I believed was doing right, but needed his services immensely to get their message across.

On a more personal note, even though he had no idea about it, he actually helped me be a better, less whiny, cancer patient. His cancer had recurred around the time I was originally diagnosed and he returned to work at the White House after I started treatment. I kept my eye on him, and his progress, as much as I could while I was on my own roller coaster ride, and I sincerely hoped for the best for him. As he was generous enough to talk about his situation in front of rolling cameras, I was grateful enough to have been given a clue as to how to deal with all of this from someone who, sadly, was more experienced in all of this.

From the White House Briefing on April 30, 2007:

{...}Let me also just -- some personal comments -- and I'll try not to get choked up, so I'll go slow. You never anticipate this stuff, it just happens. I want to thank everybody in this room. You guys -- (thumbs up.) (Applause.) I'm getting there.

Q We're glad you're here.

MR. SNOW: Thanks. And thanks for the basket. (Laughter.) I want to thank you all. It really meant the world to me. Anybody who does not believe that thoughts and prayers make a difference, they're just wrong.

Q Take your time.

MR. SNOW: I will, thanks -- especially you. Just a couple things about my situation. I'm not trying to feel sorry for myself, I'm just going to stop being choked up, because you guys have been so wonderful.

I'm a very lucky guy. As I told you before, we were, out of an aggressive sense of caution, going to do an exploratory surgery that did indicate that I still have cancer. Now, I know the first reaction of people when they hear the word "cancer" is uh-oh. But we live in kind of a different medical situation than we used to. And I have been blessed to be treated by, supported by some of the finest doctors in the world. What we are going to do -- we had surgery, where we did disclose -- and there are some cancers in the peritoneum and we are going to attack them using chemotherapy -- I'll start chemotherapy this Friday.

The design is to throw it into remission and transform it into a chronic disease. If cancer is merely a nuisance for a long period of time, that's fine with me. There are many people running around -- and I must tell you, I have received a lot of notes from folks who have had far worse cases than I have, who have survived many years with the kind of regimen that we're talking about, which is chemo up front, and then maintenance chemo to continue combating cancer tells.

I won't tell you how it's going to work out, because I don't know. But we obviously feel optimistic, and faith, hope and love are a big part of all of it.

The other thing is that I hope folks out there who may either have cancer or have loved ones with cancer need to know a couple of things. First, don't go it alone. The support I've received from you and from my colleagues at the White House and people around the country has been an enormous source of strength. You can't -- there's no way to quantify it, but you feel it. You feel it in your heart. And in many ways, that may be the most important organ for recovery, to have the kind of spirit and to realize that, in my case, I'm unbelievably lucky and unbelievably blessed -- and really happy to be back.

The other thing is -- so don't go it alone, and the other thing is be of courage. Realize that in an age like ours, things are happening very rapidly in the medical realm. I'm taking a cancer cocktail this time around, a chemo cocktail that's going to contain two agents that were not in broad use two years ago. Things are moving very rapidly, and there's always hope.

Not everybody will survive cancer, but on the other hand, you've got to realize you've got the gift of life, so make the most of it. And that is my view, and I'm going to make the most of my time with you. I'll take questions. {...}

Note the lessons here: be grateful for what you've got, because every day is a blessing; accept help from people who want to help; choose to be optimistic about the future, because you don't what it holds, and it could hold just as much good as bad; and the lesson that was unsaid, but came through clearly enough: even though you're going through pain and suffering---and I'm fairly certain the poor man was suffering at that point---you shouldn't feel the need to deny it, because that wouldn't be honest, but instead be brave, assume that, yes, there will be more of it along the way, work through it, realize it's part of the process of living for you, and hope for the best.

Tony Snow was an incredibly classy man, and our lives are lesser for his passing. Rest in Peace, dear man, and thank you for your wise words.

My sincerest, most heartfelt condolences to his wife and family.

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July 09, 2008

Aaaaah, Sweet, Sweet Relief

Saw Dr. Academic yesterday and we have good news.

CANCER FREE BABY

The biopsy came back negative for cancer, and my CA-125 that I had done last week as well came back at 10.

I have not recurred and all is well here in Cake Eater Land. Well, except for the pain thingy, for which Dr. Academic has prescribed Celebrex, which my insurance company is currently balking at shelling out for. It'll get sorted. It's just going to take some time. Sigh.

Thanks for all the prayers and well wishes, my devoted Cake Eater readers. The husband and I are in your debt.

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June 30, 2008

Le Biopsy---The Update

For whatever reason moo knew is not allowing me to update posts without publishing them many, many times, so I shall start a new one, eh, my devoted Cake Eater readers, and avoid the hassle.

The biopsy went fine. I was very nervous until I actually got to the hospital, at which point I calmed down. I don't know why, but the point you'd think I'd be getting even more nervous is actually when I calm down. It happens this way every time. I don't know why, but I suspect it has something to do with "action" and not just sitting around, stewing in my own juices. We got checked in, were handed a buzzing coaster, just like the type they give you at Cheescake Factory to inform you, an hour and a half later, your table is finally ready. Fortunately, it buzzed within about fifteen minutes, and we were off to Care Suites. It's not a good thing when the nurses and nurses aides start recognizing you. It's just not. No one wants to be a regular at the hospital. The Nurse's Aide who brought me down said, "You were just in here, weren't you?" Oh, God. Yeesh.

Despite that, I got settled in, had my IV started, blood drawn and sent off to the lab to make sure my platelets were at a level ideal enough for me not to bleed all over the CT scanner, and then I laid down in my oooga-boooga-uuuugggly gown and bathrobe to watch Anthony Bourdain tour New Orleans. I love the fact they have cable in these rooms. The lovely, soothing idiot box and my "educational programming" courtesy of the Discovery Corporation. Seriously. Nothing soothes quite like it. Anyway, right as Emeril looked like he was going to bust a nervy-looking Bourdain's chops, a RN showed up early to take me down to the CT scan. That doesn't happen very often, so I was wheeled down the hallway, and this time the husband came with, so he could be in on the chat with the radiologist. They had my previous CT scan up on the screen in their monitoring room, and after confirming that it was, indeed, my pelvis, the husband got curious, went over and looked through the window, and commented, "Nice monitor," as he walked back over to where I was sitting, on the CT scanner. You can take the geek out of the computer repair shop for the day, but you can't get rid of the geek entirely, I suppose.

The radiologist turned out to be a fairly nice, level-headed guy, who made the effort to appear as if he was on my level: he squatted down while he was talking to me, instead of hovering over me, which I have to say, was somewhat comforting, particularly considering the circumstances, which turned out to be trickier than I thought they would be. He made sure I understood the problem he was facing with my biopsy: the affected area was about a centimeter wide, and it was in an area with loads of blood vessels and intestines, just to make things more complicated. He told us that instead of coming in vertically with the biopsy needle, he was going to go in horizontally, starting at my hip bone and proceeding toward my pubic bone with a needle about the length of a pencil, because this would make things easier, with less chance of him rupturing a blood vessel, or puncturing something he shouldn't. (Although he did say he could go through a bowel loop "if he had to" and it wouldn't cause too much damage, but he'd prefer not to. I agreed that was probably wise. Curious, isn't it, the things you learn?) He was concerned that he wasn't going to be able to get a good sample, however, because, again, the affected area was so small and because lymph node tissue and fat pretty much look the same to the naked eye. He was afraid he wasn't going to get the right kind of tissue sample, and that it wasn't going to be enough to determine if it was, indeed, cancerous. He warned me that he might not be successful, and that I might wind up having to have a full-blown lymphnodectomy, despite his best efforts. They always seem to do that, these radiologists. I don't know why. It hasn't happened before, and I suspect this time won't be any different. Anyway, after the explanations were over and done with, the husband kissed me goodbye and we got down to business.

I had to have an introductory scan---with contrast!---to light up the vascular system, and all of the lovely blood vessels that the radiologist was determined not to hit with his needle. I hate the contrast. Yeeeuch. It makes you feel like you're having a hot flash whilst having to pee really badly. Awful stuff, but moving along, this is when the nurse shot me up with the IV sedation drugs, and from there on in, things get a little fuzzy. This radiologist wasn't too chatty, unlike my previous radiologists, and he was all business. In and out of the CT, some time spent with very long, very thin needles, everyone leaving the room and in and out of the CT machine again. Lather, rinse and repeat. Twice. By the end of it, I was informed he thought he'd gotten one very good sample, one not so great, and another that was fairly good. Hopefully that will be enough---and of the right stuff---for the pathology department to do their business. Then it was back to my room, where I ate lunch and watched War Games on tee vee until they finally released me, two hours later.

I slept off some of the drugs when I got here, and I felt a little more even-keeled after I ate dinner. Apparently, I need a lot of these drugs---the RN said the amount she had to give me was enough to fell the average little old lady---and it was apparent that I needed to take it easy. Right now, I'm sore, a wee bit woozy from all the drugs, and I'm about to move it back to the sofa, but will take a detour to the kitchen to pick up my ice pack, which is chilling in the freezer. I can only imagine how sore I'll be in the morning. I suspect it won't be pretty, but hopefully, it'll be ok.

In all respects.

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Keep Your Fingers Crossed

Well, my devoted Cake Eater readers, I have yet another scintillating episode of the lymphocele that would not quit for you. I'm under the gun here this morning, so I don't have time to go a searchin' in the archives for the relevant posts to refresh your memories. You can go looking for yourself.

When we last left the story, about two months ago, we'd drained it, then drained it again and sclerosed it with alcohol (and had a catheter inserted. yeuuch.), before it got infected and the catheter had to be pulled. Then I was told we were going to "wait and see" what it did, because it had shrunk, and also because, as Dr. Academic put it, "the more you mess with these things, the worse they become." The problem with this plan of attack, as I saw it, was that I was still in pain, and week before last finally called in not to ask them to reup my pain medication prescription (well, not only) but to see just how long this "wait and see" period was going to last. I updated the main nurse on what was going on, that it seemed how it had shrunk, but that I was still experiencing pain, and that just wasn't acceptable to me. She related this to Dr. Academic, who, again, came back at me with the "the more you mess with these thingsblahblahblah" line. I'd had it. I told the nurse, in a very kind and polite manner, that perhaps it was time for me to seek a second opinion on this. But, being clueless as to just what type of doctor I should go to for said second opinion, I asked her who she thought I should go to. She replied that she thought a general surgeon would be my best bet. Then, in a completely unexpected turn of events, told me she'd ask Dr. Academic who I should go to and would call me back.

When she called back she stunned me further. Dr. Academic, apparently, decided to ante up. She told me that Dr. Academic would now like me to go in for a Pet Scan, a CT Scan and that we'd move up my appointment to see him directly. She said that maybe now would be a good time to figure out why it was inflamed in the first place. She asked me if this would work for me and I said, "Yes, it does." Three days later, I drank a boatload of the two various types of contrast necessary for either scan, and went in first for the Pet scan and then for the CT Scan. It took the better part of the day to accomplish this task, but once it was done, I was happy that we were finally going to get to the bottom of this thing.

The only problem with this scenario is that when the results came in, the Pet Scan showed something surprising: not only was the lymphocele gone entirely, but a lymph node in my left pelvis was glowing. The radioactive sugar solution they shoot you up with before receiving a Pet Scan is designed specifically to look for cancer cells, because they will metabolize the sugar more quickly than regular cells and it will show on the scan. One solitary lymph node, on the side where all the troubles have been lately, lit up, and that generally means there might be cancer there.

All is not lost, however. When Dr. Academic's main nurse called me to related this information, she said Dr. Academic thinks that the lymph node might simply be inflamed, rather than cancerous, and that's why it lit up on the Pet Scan. But he didn't know for sure, and to figure it out, he wanted me to go in for a CT Guided Biopsy, which is scheduled for one o'clock CDT today. GOOD TIMES!

I swear to God I'm going to start glowing in the dark soon because of all these scans. It's just a matter of time, I'm sure, before the husband isn't able to sleep at all because of the radioactive glow I will emit when the lights go down.

The big question, of course, is Is it cancer? Well, I don't know. Dr. Academic doesn't know, which is why he's sending me in for the biopsy, and is why he patently refused to put any odds on either outcome. If it is, that means another ride on the chemo bus. If it isn't, then they'll most likely give me some anti-inflammatories to take. Do I< think it's cancer? No, I don't. Is it possible that the cancer is back? Yes. Anything's possible. Is it probable? No, I don't think it is. Of course, I am Longshot-Girl-Pays-Off when it comes to this crap, but it just doesn't seem likely to me that the cancer would reappear where it had never previously been, but rather in an area that I've been experiencing problems with---and have fiddled with twice---for the past six months or so. It seems unlikely. The "inflamed lymph node" option seems more likely to be the culprit. Or that's at least what I keep telling myself.

I'm tweaked as all hell about this biopsy. I barely slept last night. My stomach is in a rumble this morning, and not just because of the fact that I'm on the "no food or drink" rule before the procedure. I had to email my entire family over the weekend to let them know what was going on, and I hate having to do that. I don't like having to do this biopsy, not only because I think it's probably going to hurt like hell afterwards because of the location, but because I want to get it over with as quickly as possible, in the unlikely event that the pathology lab at the hospital could get the results back to me before the holiday. I doubt I'll get them back before then, but maybe the good fairies will be looking out for me.

Keep your fingers crossed, my devoted Cake Eater readers, that this doesn't turn out to be my death sentence, eh? I mean, it's not every day you go in for a test that could, possibly, determine the cause of your eventual death.

Because if it comes back as cancerous, I'm screwed, my devoted Cake Eater readers. Screwed, I tell ya. If ovarian cancer recurs, well, as I've written here many times before, that's when a cure will be beyond me, or any other ovarian cancer patient. That's when you get "salvage chemo" to make you stay alive longer---and you could live thirty years longer, but the cancer will always be present in your life. I don't want or need that.

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June 25, 2008

How Badly Do You Want to Live?: Part Two

I'm a little late with this, but yesterday the FT published an analysis piece that delved a little more deeply into the subject covered this post:the joys of socialized medicine and cancer treatment.

{...}The ethical issue of whether patients seeking some private treatment should be excluded from the NHS is only part of a much broader global debate on the rising cost of medicines. It has been brought to a head by a new generation of cancer drugs that typically cost £30,000-£70,000 a year per patient. Concern over the rising total bill to the NHS prompted government negotiations that resulted in a 5 per cent average cut in medicine prices last week in a new contract with the pharmaceutical industry.

Around the world, escalating prices and expanding use are creating similar tensions. “Five years ago, the system worked, but now public health watchdogs are increasingly withholding treatment,” says Jonathan Anscombe, joint head of the European health practice at A.T. Kearney, the management consultancy.

Patients are being squeezed between the opposing forces of a state increasingly scrutinising whether new medicines are both cost- and clinically effective, and drug companies that resist lowering prices. Cuts may jeopardise the delicate financial balance that allows new treatments to be developed, the industry argues.

Options for reform include efforts by manufacturers to hold prices down and by regulators and reimbursement bodies to modify the criteria they use – and the costs they impose on drug development in the process. Patients, even in countries used to universal health coverage, may also have to start assuming a growing share of the costs directly

{...}One-third of people in the industrialised world develop one form or another of cancer. Desperate patients – and their doctors – are keen to try anything that may work. But Harpal Kumar, head of Cancer Research, the UK-based charity, cautions that most medicines remain blunt instruments. “The vast majority of cancer patients are cured by surgery and radiotherapy, not by drugs,” he says. “Most of the drugs are not saving lives but extending them by a small number of months.” His view is shared by Michael Rawlins, chairman of the National Institute for Clinical Health and Excellence (Nice), which advises the NHS on whether it should reimburse new medicines.

Nice has recommended that the NHS should not pay for six different cancer drugs in recent months. Two were rejected for lack of proven clinical effectiveness and the rest because, despite some demonstrable benefit, they were judged too expensive and would have been given at the expense of cheaper or more effective treatments for other patients.

“I think the drug companies are really going to have to take a hard look at the value of their products and price them accordingly,” says Prof Rawlins. “If there is a small benefit, they cannot charge premium prices. Traditionally they charged what they thought the market would bear. But we can only afford to pay when the price for innovation is in proportion to what it delivers.”{...} Oh, yeah. It gets better. Go and read the whole thing. But if you can't be bothered, the message seems to be, "Tough shit if you've paid taxes all your life and expected free cradle-to-grave health care. You're probably not going to get it. The meanie pharmaceuticals won't come down on the cost of drugs, and we're not going to pay their price, so you're pretty much SOL. Sorry, but it's not our fault."

I ask again: Why do some people want to inflict socialized health care on us? You pay through the roof for lowest common denominator health care, and, then, because the government decides it's going to break its "social contracts," you're going to have to pay some more? No thank you.

Methinks some people would be begging for a privatized health insurance system, should we wind up going that route.

Or at least they will be when it's their life that's on the line.

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May 28, 2008

Random Observation for Wednesday, May 28,2008

Ahem.

MENOPAUSE SUCKS!

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May 07, 2008

I Kinda Feel Like I Should Update the Hair Story

So, one year ago today, I went bald.

On said night, after we'd finished dinner, the husband made me undress and took me into the bathtub. While I sat there, on the edge of the tub, naked as a jaybird, he buzzed me with the clippers, taking any and all excess length off my head, of which, it must be said, there wasn't much. After a quickie shower, which washed my hair down the drain and off my neck, I got dressed again, and he then sat me down, on one of the dining room chairs he'd placed in front of the kitchen sink, lathered up my head with shaving cream and took a razor to whatever was left.

When he was finished (it took a while, because my scalp had never been shaved before and it proved somewhat reticent. Also, the husband, new to the task of shaving heads, didn't want to cut me, as well), we went into the bathroom to take a peek in the mirror, and that's when I started to cry in the husband's arms. I felt like Samson---completely vulnerable to attack. After a while, I wiped my eyes, put on the hat my sister had knit for me, and went out to the living room to be distracted by the tee vee. The husband, upset because I was upset, again made the offer to cut all of his hair off, so I wouldn't feel alone. I refused, mainly because I wanted to be able to play with his hair whenever I wanted to, and extracted that promise from him. (Bless him, he kept that promise, too.) While I was entirely horrified that I'd lost my crowning glory, I couldn't stop myself from feeling up my smooth head. It was weird, and it wasn't something I ever got over doing the five months I was without hair. If I was just sitting around, watching tee vee, it was guaranteed that that's where my hand was, feeling up my skull. It was normal for me to do this, I suppose, considering how much I played with my hair, when I had hair. I'd just substituted running my hand along my scalp, feeling the bone, trying to memorize all the bumps and curves, for making braids and twirling the locks.

Also, as it turns out, going bald brought back a second grade memory that I'd completely forgotten: one day, in the middle of winter, coming home from school, I decided to take a "shortcut" between two garages and sliced open the top of my head on a low hanging gutter. At the time, I hadn't realized that I'd done anything to myself, but by the time I'd reached home, I realized there was all this red stuff on my hooded green ski jacket. I couldn't figure out what it was. My memories of the event are foggy, but I must have freaked the ever living hell out of my mother when I walked in the back door. As it turns out, I'd cut open my scalp, through the hood of my coat, and had bled like a stuck pig from the inch-long gash. After a phone call to the doctor, the decision to not get stitches was cemented, because it wasn't bad enough to merit them, I was cleaned up and I went into the family room to watch cartoons. I remember eating an awful lot for dinner that evening, but I was fine overall, and the incident was soon forgotten.

Until I went bald, that is. While he was shaving my head, the husband wanted to know why I had a small scar on my scalp, and I was puzzled for a few moments until I remembered this incident. I was amazed and had to tell my mother and sister all about it. Ironically, a few weeks later, my niece, Maggie, cut open her head while she was horsing around at one of her brothers' baseball games, and despite all the blood (because, as I found out from a nurse friend that scalp wounds bleed like crazy) everyone comforted my sister, saying at least it was under her hair, so no one would notice. Christi told me she'd laughed and said, "Well, you never know about that. My sister just lost her hair from chemo, and she found..."

About every week and a half, the husband would get to shave me again, because white fuzz grew in small amounts on my head and, when it got to a certain length, it would start to catch on the scarves I wore. He got pretty good at this, and had it down to a routine before long. Every time a chair from the dining room would make it's way in front of the kitchen sink, where the husband would lather me up and would go to town, while I tried to watch the little tee vee we have installed in there without the benefit of my glasses. As you might have guessed, I wound up listening more than watching.

Fortunately, in the middle of August, one month after my last Taxol treatment, the hair started to grow back. It was earlier than I'd thought it would be, but it was just fine with me.

One year later, here's the progress report:

nowwithhair!.jpg

Yeah, I fully realize I look like a complete and utter spaz in this picture. All I can say is you try to take a decent picture of yourself, by yourself and see what you can come up with.

But, let's face it, I'm a complete and utter spaz...with hair. Which is good.

Yes, it came back in curly. That's par for the course, but it's not any curlier than what it was beforehand. Thank Goodness it didn't come back in as a fro. What I wasn't expecting is that the texture is now completely different. My hair used to be somewhat coarse, now it's fine. Unfortunately, that doesn't help in the frizz department, because it still erupts whenever it's wet. Sigh. I was hoping God was going to throw me a bone on this one, alas, however, He apparently has better things to do with his time than focus on my battle with frizz.

I hope I never have to go bald again because of chemo, because that would mean baaaaaad things regarding my future, but if it happens, I know I'll live. I won't be happy about it, but I doubt I'd be as traumatized as I was last time. And, if it happens, well, I won't have to spend a load of money on scarves and hats because I have a whole drawer full of them. If I had one thing to do over, I would get a wig. Not for vanity purposes, but simply because there were days when I would have enjoyed some privacy regarding my condition. That's all. A wig will only do so much to make you look normal if you already look ill. I just would have appreciated a few days where everyone wasn't privy to my business and a wig would have enabled that.

So, that's the hair update. I suspect that this might be the last one, my devoted Cake Eater readers. For which, I'm sure, more than a few of you might be grateful beyond all belief.

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May 05, 2008

Street Sweeping Away the Winter Detritus of My Life

Spring, it appears, has finally arrived here in the Twin Cities. Lately, I've been wondering where this phenomenon has been, because it sure as hell hasn't been here. I've found myself fascinated by tee vee news reports coming out of Indiana, where it appears the entire media has decamped for tomorrow's primary, and wondering at all the luscious green I see in the background behind the talking head of the moment. Why do they have leaves on their trees? How'd they get so lucky? Wait a sec...it actually looks like that lawn needs to be mowed! Fuckers! It's not fair! I haven't given a rat's ass about what the reporter was actually reporting on. Who cares about Obama or Clinton or McCain. I want to know why there's this inequity in the arrival of spring. That's the real injustice going on here, not sky high gas prices! Why, there ought to be an investigation!

But, as I wrote up there, it appears spring has finally arrived here in the Cities, and I've got the sunburn to prove it. Yesterday, I had coffee with Mr. H., per usual, and instead of sitting inside our usual haunt, we moved to our summer location, on the other side of the building, where the sun shines most brightly at that stage of the day. Even though we were stretched out on hard concrete, and had to keep shifting every few moments to remain comfortable, the sun felt so good we didn't even contemplate a move to more dignified seating arrangements, which would have better suited our aging bones. We looked like a pair of college students, flopped out wherever we could find the space, rather than a pair of people in their mid-thirties. We didn't care. We loved it.

After I left Mr. H., the husband and I decided a walk around the lake was in order. The husband raided his humidor and snagged one of the largest Churchills he had in residence, to complete the maximum pissing-off-of-overly-healthy-runners effect, and set off for Lake Harriet. It was nice to be over there, because the last time I was over there, the lake was still covered with ice. Fortunately, all the ice had indeed melted and the water looked dark, clear and cold. We made our way around, and while it was lovely, I became a. very sunburned and b. exhausted. It appears I have very little stamina going on. All these infections (and, yes, there's a new infection that I'm not going to talk about, but which I shall simply say is a result of the antibiotics and certain members of the female Cake Eater readership will say, "Ohhhhh," in an understanding way, while the men shall remain clueless.) have robbed me of my energy. I've been fighting crap off for so long that I'm expending all my energy on that, it seems, and there's not much left over for other things. By the time we got back to the Cake Eater pad, I was pooped. I put on my nightshirt, crawled into bed, and promptly fell asleep for a few hours. That's not really all that great, in the scheme of things. Yes, I should feel some mild exertion after walking five miles. No, I should not collapse into bed, utterly exhausted, after walking five miles. Neither should the husband have had to gently encourage me to keep pushing on until we reached home. It was pathetic.

This morning, it appears that it will be yet another nice day, and the street sweepers are out and about, taking advantage of it. It's time to wash the streets clear of all the sand and salt they used to keep people from careering off the roads during the winter storms. It's time for all that nasty, icky, wintry stuff to go down the sewers, to wind up God only knows where. I wish there was such a thing as personal street sweepers, which could come into your life and wash away the nasty winterized streets of your life. My streets could use a good wash. There's too much detritus left over from the winter. I need to get the left over salt off my roads before they start deteriorating.

Add to this that I don't think the next week or so is going to be much fun in that Mother's Day is this coming Sunday. Sigh. Now, to be clear, I don't begrudge the mothers of the world a day to celebrate the fact they've brought offspring into the world. I really don't. Motherhood is a hard job; the moms of the world deserve a day to sleep in and have breakfast in bed. I'm not knocking anyone. It's just a very hard day for us infertile myrtles, and I really don't think that people who have kids get that. Mother's day is not designed to remind us of what we don't have, but desperately want, but that's what it turns out to be. Every sappy commercial for reasonably priced jewelry bought by toddlers "who took out their mom's car without permission to go to the mall" turns me to mush...and reminds me of what I don't have. These commercials instantly bring to mind the horrible price I've had to pay to be cancer-free; of the price I've had to pay to survive. I can live with the grand bargain I've made, but only if it's not shoved in my face every three minutes. I don't want to think about it. That's the way I deal with it. It's there, yes, but if I can avoid thinking about it, all the better. This time of year, however, with the incessant ad bombardment, it's hard to avoid thinking about it. Last year, I finally broke down in tears after viewing, of all things, a Lowe's commercial, advertising, of all things, paint, that was tailored around Mother's Day. I wonder what's going to make the dam burst this year? Ads for reasonably priced jewelry? Will Hallmark send the flood flowing? Or will it be an ad for Teleflora? We'll just have to see, I suppose, because something will start it off. I just know it. I've got an uncomfortable lump in my throat as I write this screed, so God only knows what kind of run on the kleenex box will occur when I really decide to let loose.

Even if the weather's nice, I will avoid the lake next Sunday, because it will be chock-a-block full of families, celebrating Mother's Day with a nice walk around the lake on a sunny spring Sunday. Walking around the lake is a family friendly activity, after all; a picture-perfect example of what families should do on Sundays, if only there was enough time every Sunday, between soccer and baseball practices to accomplish such a thing. There will be loads of kiddies in wagons, on scooters, bikes, and their number will undoubtedly include some overly-padded kids who desperately wanted to rollerblade around the lake, the little plastic wheels on their faux-skates deteriorating with every push, but who are having trouble making it. The trails will be clogged with such people, and it will be intolerable to me, who would like nothing more than to be carting my own child around in a stroller or a wagon, enjoying the day like everyone else. We will also avoid any restaurant in town, the mall, movie theaters, etc. Everyone will be out celebrating Mother's Day, in all these locations. Of course, this means our Sunday will probably be spent at home, but by then, at least, the airwaves will be free of Mother's Day ads by that point so I should be able to watch tee vee without being reminded of what I don't have.

Hope will only get you so far in a situation like this. I can hope that one day we'll be able to adopt a baby, but that is so far off in the future, and such a crapshoot in the first place, that I can't really think about it right now. I can't delude myself with the hope that it might happen. It feels like when you're dead broke and you wish on a star to win the lottery. Sure, it might happen. But will it? Probably not. You can't organize your life around a wish that might never be granted. If it's not, then I'll forever be destined to be everyone's favorite auntie. The cool aunt who they can relate to. But will those nieces and nephews who love me so much now bury me when I die if the husband's not around? Would I have made enough of an impact in their lives to even warrant them showing up for my funeral? Or would they skip it, because they have something going on in their lives that prevents them from dropping all and attending, working on the assumption that, "Aunt Kathy would understand." This is the kind of crap you're forced to think about when you don't have kids. The childless of the world do not have the same givens in solving life's theorems that those with children do. Is it fair? No, but when is life ever fair? This is the bargain I've made, and I'll have to live with it. This week, however, it's on my mind a little more than most.

Forgive all the maudlin Monday morning ramblings, my devoted Cake Eater readers. Suffice it to say, I'll just be happy when Mother's Day is over with, and I can get back to comfortably ignoring all of this stuff.

Posted by: Kathy at 09:54 AM | No Comments | Add Comment
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April 21, 2008

Alexander Fleming, I am Your Humble Servant

Blessed antibiotics. Verily, if we didn't have them in this day and age, I think it could be said that I might very well have been a goner this past week. But we do have them, so I can keep on bugging you, my devoted Cake Eater readers.

Yes, I am better. I'm still not pumping on all four cylinders, but am doing ok on about two and a half.

It's been such an eventful past week and a half, that I don't really know where to begin, so I shall try and sum things up in bullet format, because, honestly, I don't have the energy to put this thing in essay format. Here's the story:

  • Went in to the hospital on Friday, the eleventh, to have another go with the sclerosis. They put the kaibosh on that once it became obvious that I was feeling the 98% pure alcohol they were pumping in---which I shouldn't have been. Down the hall to the X-Ray machine they go, they pump in some contrast, take some pictures, and ascertain that there's a hole in the lymphocele, dear Henry, because the contrast is leaking out of it and into my peritoneal cavity. Furthermore, the radiologist informs me that the fluid that's draining into my neato bag looks more like peritoneal cavity fluid than it does like lymphatic fluid this hole might explain it. I've got some cool photos of this procedure, but as they're not of the digital variety, I won't be posting them. Suffice it to say, they decided to send me home while they consulted with Dr. Academic to see what he wanted to do.
  • We trudge home, only to find out four hours later that Dr. Academic is out of town and his main nurse has decided to take the day off in celebration. The question of what to do gets thrown to the nurse practitioner, who is fairly decent but whom I don't know at all, and she punts: she says, "Let's wait and see if the lymphocele doesn't close up so we can have another go with the sclerosis." Greeeeaaaaat.
  • The drainage tube gets clogged (yeah, I know, bleech) on Sunday, which involves another trip down to the hospital. The pain is also a lot worse, and I can't really figure out why. There's been pain associated with this thing, but since the installation, it's wheedled its way down. Now it's back at full, nerve rending force. It feels like it's going away after the de-clogging, but it doesn't. It gets worse. By the wee hours of Monday morning, I'm in such pain that I'm telling the husband we need to go back down to the hospital. He's exhausted, however, and is in no mood to coordinate an early hours ER trip---with all that entails for us, who have no car---so I suck it up, take some pain meds, and go to bed, hoping it will be better in the morning.

  • It's not better in the morning. In fact, I scream not once, not twice, but three times as I tried to get out of bed. Excruciating, I believe, would be the word to describe it. We call Dr. Academic's off-hours answering service and announce that we're heading to the hospital. We do the same with the interventional radiology department. We get checked into the ER, and after a wait, are introduced to the nice people who will be handling my case. One nice nurse and one nice doctor, who, between the two of them, manage to hook me up to some IV morphine (oh, the lovely morphine) and get me set up for another CT scan. I'm wheeled down to the CT scanner, they run me through, shoot me up with some contrast, and they declare all looks fine, and they can't understand why I'd be in such pain. I even get a new radiologist, who wants me to actually keep the thing in so I can undergo more sclerosis procedures in a few weeks. Bite me. I tell him the thing's coming out.
  • I actually felt sorry for the ER doctor, who really was a very nice guy, trying to coordinate everything. Seems as if Dr. Academic decided this would be a good week to take a vacation, so he's not around. My original radiologist isn't around either. I'm getting second-stringers all the way around. Distinguished second-stringers, but second-stringers nonetheless. Yet, we all agree on the plan to remove the catheter, and, after a few hours of waiting, which went fine for me, because I was high as a kite, but was somewhat more trying for the husband, the very nice nurse who'd been handling my drain all along came down and removed the thing, and I was finally released. I felt better and had hopes everything would get better entirely in time.
  • It didn't. The pain was still there that night, and when I awoke at about four in the morning, completely drenched, I was tempted to put it off as a night sweat, but took my temperature anyway. Good thing I did, too, because it was 102. The good times just keep coming!
  • Next morning, we call into Dr. Academic's office first thing, and the husband, who has HAD IT with being shunted around, stays on-hold and when the main nurse finally picks up the line, shoots so much information about what's happened over the past couple of days that I think the poor woman's ears must be smoking. When he's done with his laundry list, he hands the phone over to me. She asks, "What's going on?" "I think it's infected. I'm running a fever and I'm in pain. It's red in a few spots." "Chills?" "Yep." "Ok, let me talk to the other nurse and we'll get a prescription for some antibiotics called in for you." A half hour later, I've got the actual prescription in my hot little hands and am ingesting a Levanquin tablet. It helps. Immediately. The pain isn't a whole lot better, but it's easing. The fevers haven't gone away, but I feel as if we're getting a handle on things. This is when it becomes clear that my bedroom is going to be the extent of my world for the next few days.
  • I sleep a lot. I manage to lose my appetite entirely, but somehow manage to subsist on lifesavers and sprite alone (and I'm thinking the fact I've got a couple of good sized hamhocks on my ass had something to do with it.). The husband is caregiver extraordinaire. He takes temperatures, tries to get me to eat, keeps the drugs at hand, helps me up and down, and is just in general a good egg. By Friday, which is when the main nurse told me I would be feeling better, I am actually feeling a bit better. I'm very fond of drugs which do precisely what they say they're going to do. Alexander Fleming: I am your bitch. Whatever you might need from the hereafter, I'm your girl. Just say the word.
  • Yesterday, I was able to walk around the neighborhood a bit, which was nice because it was GORGEOUS outside yesterday. Woohoo. Spring has finally arrived, it seems. Only question is, will Kathy get to enjoy it this year? The verdict's still out on that one. The problem of the infection may have been solved, but the lymphocele's still there, throbbing away, and I haven't the foggiest on what we're going to do about it. I suspect surgery. We'll just have to see, though.
  • And, now, my devoted Cake Eater readers, I'm off to take a nap, because this recapping business is tiring. Particularly when you're on percocet.

Posted by: Kathy at 09:20 AM | Comments (5) | Add Comment
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April 08, 2008

Well, That's Clear Now

So, there was a reason why Dr. Academic opted for moi to have a simple drainage instead of the booze-inserting procedure...and that reason is, ahem, it effin' hurts. The original radiologist wasn't kidding when she said the drainage was "more comfortable" than the sclerosis procedure. Sheesh. If someone would have explained this, yea, verily, I would have understood.

Everything leading up to the procedure was pretty much the same. The ugly gown, the nasty texturized socks, the struggling to start an IV, the wheeling of my fat ass to the CT scanner. You know, the regular. It became apparent, however, when I entered the room that things were a wee bit different this time around. This time there was a lot more equipment in the room---surgical looking equipment. There were also pads lining the CT Scanner, you know, in case I leaked. They got me set up, and I was introduced to a new radiologist. He was a nice guy, and while I've forgotten his name, he explained that he'd chatted with Dr. Academic, and they'd jointly decided that the best bet for me would be to insert a catheter into the lymphocele, for improved drainage. He said that the alcohol probably wasn't going to do the trick the first time around, that they'd probably have to take two or three whacks at it, and that having a catheter installed would a. make it easier the next time around, it would b. help us determine the amount of drainage to see just how efficacious the process had been in the first place. With that explained, they went to town, doing much the same thing as they had last time, but obviously there were more drugs involved this time because all I really remember about the whole process was that a. it hurt and b. we had an interesting conversation whilst all this was going down about the kidney guy over at Methodist. I expressed my opinion that the mistake had to have been in the chart long enough that everyone thought they were removing the correct kidney, and the radiologist agreed with me. He even added that he'd just looked over some images that morning where left and right had been mixmatched, and said it was hardly uncommon for that to happen. (Take that for what it's worth.) He said he doubted if the surgeon would ever perform surgery again, even if the guy was cleared in the investigation. Interesting conversations aside, soon thereafter I'd had another 50cc of fluid drained, a wire had been inserted via the needle, I'd had a big ol' blue catheter stuck to my belly with adhesive tape, and about 10cc of pure alcohol had been inserted into the lymphocele. Attached to the big blue catheter (it's not really that big. It's a little bit bigger than a fifty-cent piece), is a foot long bit of tubing attached to what looks like IV bag. In the midst of this is a locking mechanism that can turn the flow on or off, or can reverse it entirely. If it wasn't attached to me, it would be interesting, but it is attached to me, so it falls strictly into the "YEEEEUUUCH" category.

They wheeled me back down to my room and then it was time for the ceremonial "Rolling Around of the Patient." They have to make sure that the alcohol hits the entire inside of the lymphocele so I had to spend fifteen minutes on my back, another fifteen on my left side, my right side, and, of course, my belly. This was, to put it mildly, excruciating. Of course, I was starving by this point in time, so I ate lunch while this was going on and was called "Ernie" by the husband because of all the crumbs I left in the bed. {insert "whatever" shrug of shoulders here} Not only was I extremely sore from the catheter insertion, the alcohol stung like a mo'fo. When the nurse pulled the booze out, I was relieved. Until I realized that the pain of having the catheter inserted still hadn't let up. Another nurse, who deals specifically with drains, came in and explained all the various equipment that was now attached to my body, how to keep it clean, how to drain the bag and measure the contents. It's important, we were told, to keep it clean (lest it get infected) and to keep accurate records, because this would be crucial in deciding how many more times I needed to have the alcohol inserted. The more drainage I had, the worse it was, and the more I would have to undergo this procedure. (The radiologist suspected that, even though we were going to give this a good whack, it wouldn't close up at all. He said he thought that the lymph nodes were draining into this thing entirely and that would keep it from doing so, but he was going to give it his best shot, so we wouldn't have to resort to surgery.) The less drainage I had, well, you probably get the picture. After that, they handed me a prescription for some vicodin, all the various equipment we needed to keep the drain up and running, and we were on our way out of there.

So, that's where we're at. I'm very sore right now. Getting up and down, in and out of bed, is trying. Vicodin, again, is my friend. The husband is, poor guy, having to deal with taking care of me. Nevertheless, the pain is better today than it was yesterday, when I was seriously trying to judge just which procedure---my hysterectomy or this---had been more painful. (I've come to the conclusion that I think I just had better drugs after the hysterectomy.) Moving around isn't fun, particularly when you add in that I have to carry around this bag every time I want to go someplace. It's sort of like having an IV, and it's interesting how quickly your mind reverts to having to take that thing with you everywhere, but it's still a pain. I have to cover the stupid thing up with saran wrap when I want to take a shower, and I'm told I can lock the mechanism and disconnect the bag from the tubing when I shower, but I'm scared of doing so, lest I futz the whole thing up because we know Kathy isn't one of the mechanically inclined few. I can't remember whether I'm supposed to call them or if they're going to call me to see where we're at regarding the drainage; I just know I could be back in the radiology department by Friday to have another tete-a-tete with the booze. It's all just a big mess.

But, I suspect, I shall live. Now, if you don't mind, I shall leave you, my devoted Cake Eater readers, because I've got an appointment with my bed and some vicodin and I intend to keep it.

Posted by: Kathy at 09:41 AM | Comments (3) | Add Comment
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April 02, 2008

Second Verse, Same As the First

It didn't work.

I suspected as much, a few days after the procedure, when the pain came back. There was the "getting over the soreness the procedure caused" pain, and then there was the regular pain, yet it was fairly simple to realize that latter shouldn't have been there. Then there was the fact that when I palpated the lymphocele itself, it was hard again, whereas it had been all soft and mushy---the way it's supposed to be normally---right after the procedure. I called into Dr. Academic's main nurse, talked to her about it, and, since I already had a CT scan scheduled for the 25th, we decided it would be best to keep that appointment, to confirm or deny my diagnosis.

So, last Tuesday, after my volunteer shift, I checked in for yet another CT scan---this time with the added joy of contrast! If you've ever had a regular CT scan, you'll know that it's like having an X-ray taken, but instead of holding still while they shoot a still picture, you have to hold your breath while they run you in and out of a donut a few times. In other words, it's fairly painless, and leaves you with you an odd craving for Krispy Kremes. The contrast, however, adds the sprinkles to the donut. You have to take oral contrast at three specific times before your appointment, but then when you go in for the actual appointment, they insert yet another IV, and then, while you're being scanned, they shoot you up with more contrast, which, I have to tell you, my devoted Cake Eater readers, isn't a whole lot of fun, even if it is over with quickly. You feel three things when they inject the contrast: a full body flush; a nasty copper-ish taste in your mouth, that reminded me of having a mouthful of blood; and, finally, the urge to pee REALLY BADLY, like when you're on a road trip, you've drank a soda and there are no restrooms for a hundred miles and you're really tempted, despite being a lady, to pull over and relieve yourself in the weeds. Fortunately, these lovely side effects were over in few moments, and once I stopped bleeding from having the IV removed (more advil is the culprit) I was out the door a little over an hour after I'd checked in for the procedure. After it was over and done with, I was happy, but I wasn't anxious about the results: the thing had either filled up again, or it hadn't, and, either way, I'd find out in a week, which was my next scheduled appointment with Dr. Academic.

Yesterday, again after my volunteer shift (I prefer the one-stop-shop), I humped it over to Dr. Academic's office, only to find out, after I'd filled out the required check-in slip that Dr. Academic had moved his practice. What? If I'd bothered to look at the sign listing out all the occupants outside the main door, I would have noticed his name was no longer on that list. But I hadn't, so it was news to me that he'd moved. Fortunately for me, however, he hadn't gone very far: just down one floor, into a larger office, that he now shares with a thoracic surgeon. It's their first day in the new office, so, obviously, they're still working the kinks out. I schlep myself down to that office, then schlep myself back up to the main office, to the lab, where I had blood drawn, then it's back down the stairs we go, for the endless wait that usually accompanies visits to Dr. Academic. By the time he enters the exam room, a little over an hour later, he closes the doors, wearily leans back against it, lets out a long sigh, and says, "It's filled up again."

Somehow, I resist the urge to reply, "No shit, Sherlock."

He quizzed me about some numbness in my left thigh I'd felt after my surgery until about December, which, magically, reappeared after the first draining. We chat about the pain it's causing. (He suspects the lymphocele appeared right after the surgery and this was causing the numbness all along.) And then we decide that the best thing to do in this circumstance is to have the procedure I thought I was to have originally---where they drain the lymphocele, much like last time, only after that the radiologist will insert the caustic agent of her choice (it'll either be alcohol, or talc, or perhaps something else), shift me around a few times to make sure it hits all the high points within, and then, supposedly, the lymphocele will fill up with scar tissue, but should also shrink considerably. This is supposedly the silver bullet that will solve the problem. The procedure is technically called "CT guided drainage with sclerosis." There was some bit about "on the left iliac chain" in there, too, but I didn't write that down, so it's lost to the shifting sands of my memory. I'm scheduled to have this done on Monday, April 7th, and hopefully it will work, because I really don't know where we go from there if it doesn't, and as I'm fearful that it would probably include surgery, it had better work. Fortunately, this procedure is, like the last one, outpatient. Second verse, same as the first.

This, my devoted Cake Eater readers, is why there's been a dearth of decent posts around here for the past couple of weeks. I'm in pain. Is it as bad as the pain that caused me to go running to the hospital in the first place? No. It's not anywhere remotely near that level, thank God, but pain is pain. It distracts you and, no matter how many drugs you take to deal with it, it wipes you out. It sucks your energy away, like a runaway Dyson. Life becomes a slog, instead of this joyful, better smelling and looking experience it was supposed to be after I was declared to be as close to cured as I'm likely to get. It not only represents a big mental shift (I was supposed to be DONE WITH THIS SORT OF THING, HELLO!), it just takes you right back to where you don't want to be: being physically incapacitated. You'd think I'd know by now that's it's a baaaad thing to write when I feel like this, that I just drive people away with my weirdness, but, alas, I just want things to continue apace, so I write, because that's what I do. I've spent enough time being sick, in pain, and not being productive, and I just want. it. to. be. over. with. Hence, you, my devoted Cake Eater readers, get screedy posts that make no sense, and I'm sorry for that. I should just keep to the one liner posts in circumstances such as this. I suspect I won't be posting too much over the next few days, just because my drug of choice, Advil, is now off the list of things I can take to deal with this, and you shouldn't have to suffer the consequences.

And now? I'm off to take a vicodin, of course, because that's one of the few things I can take now. Good times, no?

Posted by: Kathy at 12:52 PM | Comments (5) | Add Comment
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March 11, 2008

Somehow, Wires Were Crossed

Everything went fine.

Everything, that is, except that I wasn't scheduled for the procedure I thought I was to have.

See? I told you something wasn't going to go as advertised.

We checked in at the hospital and they set me up in my own room, in a portion of the hospital they call "Care Suites." I've been in there a few times, as a volunteer, delivering the box lunches they order up for the patients. My room, in fact, was right next to the fridge I usually put the lunches in, so I knew precisely where I was. I'm still not really sure what they do there, but it's got something to do with looking after people who have radiologic procedures done (Ya think?), and people who need more monitoring after same day surgery. Perhaps? I dunno. Anyway, after putting on one of those HIDEOUS gowns, they did the standard stuff, vitals, IV inserting, blood taking, running through medical stuff, handing off the remote control for the tee vee, you know, the regular. When it came time for the procedure, a very nice radiology RN wheeled me (yes, I was in bed, and it was, again, very luxurious) down to CT. They got me settled in, and it was then that a problem arose.

The RN started talking about how the procedure was to be done, and when she reached the end of her schpiel, I was a bit confused. She had described how they were going to take some preliminary images with the cat scanner, the radiologist would claim her stake on my lymphocele, then they'd be running me in and out of the scanner in between draining the lymphocele, to make sure they had everything. She asked if I understood, and I said, I did. "So," I asked, "how long do you have to wait before you inject the alcohol?" She looked at me queerly, and said, "Why would you think you were having that done?"
"Because that's what I was told would be happening. That after draining it, you'd put alcohol into it so it would create scar tissue and would shrink up."

"Ok," she said, and went into the control room, to chat with the radiologist.

This is the point where I muttered, "Houston, we have a problem."

The problem being that Dr. Academic's main nurse didn't write up the order for the alcohol procedure, but rather for a simple draining of the lymphocele (or "suspected lymphocele", because they're still not sure that's what it is.). Now, I'm not really sure why, when I talked to her on Friday, and we chatted specifically about the alchohol procedure, she didn't say, "But, Kathy, that's not what you're having. You'll simply have it drained, and we want to do it this way because it might work, and it's less invasive." But she didn't say that. She talked about the alcohol procedure, and that's all she talked about, SO HELLO, that's what I thought I was having. I mean, am I dumb or something, because she NEVER mentioned draining the thing outside the context of this certain procedure. NO ONE in that bloody office who I chatted to about it said ANYTHING about simple drainage, because, and I quote, "Chances are it'll just fill right back up." It sounded to me as if they weren't going to waste their time with that procedure, and Dr. Academic thought it would be better to skip to the step that did work.

So, they ran around the control room for about a half hour, calling Dr. Academic's nurse, then they got a hold of Dr. Academic himself, and he ok'ed the procedure. I just couldn't get my head around why he wanted me to do this, when it had seemed like he'd ixne'd it right off the bat. I was confused and tried to explain to the RN that this is what we had talked about and that this is what I had signed up for. And she didn't doubt me one iota. She said, "You obviously know what you're talking about, but we just need to be clear about this." The radiologist came out and we chatted. She recommended having the procedure done, because it was less invasive and it was going to be more "comfortable" than having the alcohol procedure done. The crux of the matter was this: it was either drain the sucker, or that would be that. My choice. I chose to drain it, but am still bewildered as to why the wires got crossed in the first place.

As far as these sorts of things go, it was pretty easy to bear. In and out of the machine, marking the injection point with a sharpie, in and out of the machine again, then they gave me the IV sedation drugs, the radiologist numbed my belly up with some lidocaine, cleaned me off with iodine, and then did her thing. Then they ran back into the control room and ran me in and out again. Lather. Rinse. Repeat. Until it was over and done with, by which time one of the lymphocele's walls had collapsed, 44cc of supposed lymphatic fluid (it was yellow, that's all I can tell you) was sent off to pathology, and the doctor had put a band-aid on my wound. I was wheeled back to Care Suites, and since I hadn't been allowed to eat or drink for four hours before, devoured a box lunch I am sure one of my fellow volunteers schlepped up there a few hours before.

They let me go about fifty-minutes after the procedure was done, and I was happy to get out of that place. I got a wheelchair ride to the door, and our friend ML picked us up. Then I came home and napped for about two hours.

As of right now, I'm simply sore in that neighborhood. They told me to take advil for any pain. I wish I could take a bath and soak some of the pain away, alas, however bathing is verboten until the injection site is completely healed. Bummer. I didn't think the IV sedation was all that bad, but if I'm up and moving, I'm not really enjoying life all that much. Even now, sitting at my desk, writing this, I'm getting woozy. If I stay down on the sofa or in bed, I'm ok, so that is where I shall be heading shortly.

Thanks for all the well wishes, prayers and everything. I appreciate them. You're a lovely bunch of coconuts, my devoted Cake Eater readers. But now you need to send them Russ and Janis' way, because they've had a rough couple of weeks and it's shortly to be compounded by the fact they're not going to get hardly any sleep for the next few months.

Posted by: Kathy at 09:02 PM | Comments (1) | Add Comment
Post contains 1147 words, total size 6 kb.

March 10, 2008

Well, Here We Go Again

As I mentioned, I've been having some medical problems. Again. Sigh. When will this long national nightmare be over with? I haven't the foggiest, but hopefully it will be soon. As in, it might end tomorrow.

Because, my devoted Cake Eater readers, I'm going back into the hospital. And not to volunteer, either.

The deal is this: the lymphocele is causing more pain. I called in about it last week, and Dr. Academic's office called back on Friday, and instead of moving the CT scan up, like I thought was going to happen, instead they recommended that I go through the procedure where they drain the lymphocele and then fill it with alcohol to create more scar tissue, so it didn't fill back up again. Dr. Academic's main nurse is finally back from maternity leave, and it's a good thing too, because she was able to explain the procedure well enough to get me to sign on. See, I wasn't crazy about going from having a tennis ball-sized, fluid-filled sac in my pelvis to having a tennis ball-sized, scar tissue-filled sac in my pelvis. I mean, what's the point? I explained this to her, and she said, "Oh, no, that's not entirely correct. Yes, the alcohol will create scar tissue that will keep the lymphocele from filling up again, but it will also shrink it down to almost nothing." "Really?" I asked, somewhat confused. "Dr. Academic didn't mention that at all." "Well," said she of the knowledge, with a light laugh, "That doesn't surprise me." {insert rolling of eyes and a massively painful slap to the head here} I should have known he would, in his general state of rushing around like a chicken with its head cut off, forget to tell me something essential. I told her I needed to chat with the husband, and she said she'd write up the order for the procedure, and if I decided to go ahead with it, I was to call the scheduler and they'd set it up for me.

After im'ing back and forth with the husband about it for about a half-hour, we decided to go through with it, and I put a call in to Dr. Academic's scheduler to get the ball rolling. After about four phone calls with the scheduler, I am tentatively scheduled to have the procedure tomorrow.

The reason it's "tentatively" scheduled is because I've been on ibuprofen therapy since November for the neuropathies, as well as Vitamin E. I've been taking 600mg of Advil, three times a day, and one Vitamin E capsule per day, and since both are blood thinners, they generally have a five day wait rule in place, as it takes that long to get the crap out of your system so that your blood will clot normally. This would have put the procedure on Wednesday, but, alas, the hospital did not have any open slots on Wednesday, and as Dr. Academic told the scheduler that Thursday would be too long to wait, they pencilled me in for Tuesday. I now am waiting for the hospital to call me back, to confirm that the radiologist who will be performing the procedure, has signed-off.

Fortunately for me, the procedure is outpatient. Phew. That was another concern of mine, but, fortunately, Dr. Academic was wrong when he told me that I'd probably have to stay overnight after the procedure. (See, it really is a GOOD thing that the main nurse is back, because she ALWAYS has more---and better---information. Bless her.) Neither will I have to go to the different hospital, but can have it done at the one I was at last year. The procedure, I believe, is called "alcohol scleropathy," but basically what will happen is that it's a CT guided procedure, and when the radiologist gets the lymphocele on the screen, he/she/it will inject a big honkin' needle into it to drain it. Then they'll insert the alcohol, and will shift my inert body around to make sure the booze hits all the high points within it. Fortunately, I shall be, blessedly, out of it for this part. When that's over and done with, they'll keep me for a few hours for observation, and barring any goofs or complications, I should be able to go home. If you're curious about this procedure, go here and then scroll down to the portion on lymphoceles and you'll be able to see (yes, kids, there are pictures!) what will happen to me. Fortunately, while I will be out, I won't be knocked out via general anesthesia, which is good because I didn't react so well to that last time round. Neither do I have to clear out the intestines with Colon Blow (aka magnesium citrate, which is not the nicest of laxatives), but rather have to simply refrain from eating or drinking for four hours beforehand.

Surprisingly, I'm not all that nervous. I suspect that might change, though, as the time draws closer. I came to the conclusion last night, as I was trying to fall asleep, that I just really needed this one to go right---or at least for it to go precisely how they told me it would. God willing, it will, but let's face it, kids, if something was bound and determined to go wrong, it will go wrong with moi. I wasn't supposed to have ovarian cancer, and I did and I lost everything that day. I was supposed to breeze through chemo, because I was young and healthy, but I didn't. This is supposed to be no big deal in the scheme of things, but, like I said, if something's bound to go wrong, it would be just my luck for it to follow through. {Insert long windy sigh here} It would seem that millions of people around the world, enter hospitals and medical clinics every day of the damn week and get out relatively unscathed. I haven't been one of their number, and I wish it were otherwise. Tomorrow will be another test to see if I can join them in their normality.

Let's hope this is uneventful, because if I wind up back in the hospital, in one of those HIDEOUS gowns, for an extended stay, someone's head is going to be roasted on a spit and will, eventually, wind up on a platter, garnished with vegetables and greens, and a Granny Smith apple jauntily placed between their upper and lower mandibles.

UPDATE: We're on for tomorrow.

Posted by: Kathy at 09:50 AM | Comments (4) | Add Comment
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February 20, 2008

A Direct---and Slightly Confusing---Quote

A selected excerpt from the radiologist's report on my latest Pet Scan:

{...}Abdomen/pelvis: Post surgical changes are evident related to hysterectomy and bilateral oophorectomy. Clips are also present related to pelvic and retroperitoneal lymph node dissection. Fluid collection along the left external iliac chain vessels is stable in size measuring 4.8 x 4.6cm, on axial CT image 118. This again is likely related to a lymphocele{...}

Yep, kids. This is what the problem is. If anyone can explain it to me better than it has already been so---which is to say, not well enough to get it through my thick skull---have at it in the comments section.

The More Clarification Update Simply Because I Don't Want to Start Another Post

So, basically the deal is that I have fluid in my pelvis. This is a complication from the surgery, and it's a pretty common one at that. When they removed all my bits and bobs, they also removed a boatload of lymph nodes, which they then sent to the pathology department, where they were dissected, to see if the cancer had spread. Fortunately, it had not spread, but I'm short about forty lymph nodes in my abdomen and pelvic region as a result. Good times, no? Unfortunately, however, scar tissue has formed around where a lymph node/nodes used to reside, and fluid is collecting there---and isn't draining. Apparently, this thing has been there for a while---as in it was visible on the pet scan back in November---but because it wasn't causing me any troubles, they weren't worried enough to relate the information to me. Again, it's a pretty common situation and not one to worry about, unless it causes me pain.

The nurse practitioner palpated my belly---which they always do--- and while she was at it, I asked her what this particular bump was, because it'd been there for a bit and that's the same general vicinity where the pain was. I told her I didn't have enough information about the general state of where everything was located now to make any calls on whether that should be there or not. She felt it, felt it some more, put a questioning sort of expression on her face, and then she went running for Dr. Academic. About five minutes later, he strolled in and poked and prodded, and told me I was a first for him: he'd never actually felt a lymphocele on an abdominal exam. Usually, said he, they're on the posterior side of the pelvis, not on the anterior, but as I have a shallow pelvis (or a platypellic pelvis, which just made me giggle, because all I could think of was 'duck billed platypus' at the time), it made sense to him that he should be able to feel it. They said they didn't know why it would be causing me pain, but one proposition, though unlikely, was that it had become infected. It is, apparently, very rare for them to become infected this far out from surgery, and since they didn't pull blood to see if my white count was high, I gather they aren't too worried about that being the cause.

As far as treatment is concerned, they can stick a needle in the thing and aspirate it, but the problem is that it will most likely just fill back up again, and then we're back to square one. Which would be a waste of time to me. I want permanent solutions, not half-assed ones. Apparently, however, according to Dr. Academic, there's a radiologist at another hospital here in town who has had good luck in dealing permanently with these things by draining them, and then inserting alcohol to create more scar tissue so it won't fill up again because there wouldn't be any room for it to do so. (And, no, according to Dr. Academic you don't get a buzz when they insert the alcohol, so it's got that going against it.)

Before I go running to that guy, however, the pain has got to get a lot worse. Because the pain is really not all that bad (not even enough for me to take an advil for it) and I don't want to have to commit myself to more procedures and another hospital stay until I have observed the situation from all angles, we're in a wait and see mode. I'll have a CT scan done in five weeks, and then I'll meet with Dr. Academic to see where we go from there. The Pet Scans are all well and good, but they're really set up to look for cancer, and, apparently, are pretty radioactive, because he asked the nurse practitioner to set me up for something a little less nuclear. Good times, no? (As it turns out, my former employee who used to work at Dr. Academic's office has now moved over to the pet scan place, and I had a nice chat with her last week. But her visit was somewhat short, and she didn't even enter the room where I was waiting for the radioactive FDG to kick in so they could scan me. She simply pointed to the radioactive sign on the door, smiled and then walked away. I knew I was nuclear, but I didn't know I was that nuclear.)

The husband is getting a little pissed off about all this. Sigh. I can understand his frustration. I want to move on. So does he. He just wants this whole nightmare to be over with, as do I. Unfortunately, it's not that simple. He wanted to know why Dr. Academic didn't just go in and cut the damn thing out. Then we had to have the conversation about surgery creating scar tissue and any new surgeries would likely do the same, about this being a less invasive procedure, less time in the hospital and less time recovering, and, perhaps, not doing anything about it at all if the pain resolved itself. I think he's resigned himself to the situation, but I know he's not happy about it.

I'm not really happy with it either, but I trust Dr. Academic---he knows what he's doing. Besides, as he was wearing scrubs, even though it wasn't one of his surgery days, it was obvious that he'd had to perform some surgery nonetheless. You can tell that, on those days, when he's spent some time in the operating room, he doesn't want anyone to have to go back in there if they don't absolutely have to. He's not one of those kinds of doctors, quick to put people under the knife and who thinks surgery is the be all, end all. He doesn't want to have to go there if he doesn't have to, so he was pushing for the 'wait and see' approach and I concurred.

So, if the pain gets worse, we'll move the CT scan up. If it doesn't, then we'll wait and see what's going on in six weeks. Either way, I get the feeling that something's coming down the pike. We'll just have to see what it is when it gets here.

Posted by: Kathy at 06:00 PM | Comments (2) | Add Comment
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February 16, 2008

It's Been a Weird Week

You never really know what's going to come of a call to Dr. Academic's office.

I don't really call all that often any more, simply because I'm not having that many problems. I never called all that much to begin with, simply because I felt guilty taking time away from patients who could really use the help. I sucked up many of my complaints, and I was glad that, when they passed, I skipped calling for help. Going through chemo is like going through anything else: you get used to it. But even now that I'm through the worst, I nonetheless have to call in every now and again to get certain things taken care of---getting my vicodin prescription refilled is at the top of the list (due to idiotic Minnesota state law in regards to narcotics, you can't order a refill through the pharmacy, but rather you have to go through your doctor's office). Any time I have questions, though, they're pretty good about getting me an answer, even though Dr. Academic's main nurse, who is omniscent and omnipotent and is, generally speaking, AWESOME, has been on maternity leave since December and her absence has really been screwing things up. That aside, I called in the other day because, well, I've been having some pain in a place where I shouldn't be having any: my pelvic region. Particularly, in the area where all the trouble began.

I called in because, mainly, I was curious. It's not high-grade pain. It's very low on that 1-10 scale they use to rate your pain, and I was more curious about it than anything else. I thought, perhaps, this was me finally feeling the mysterious endometriosis, which I never knew I had until after I had my surgery. Dr. Academic had mentioned at our last meeting that he thought, perhaps, that the chemo hadn't killed it off, like they thought it would. Apparently, endometrial tissue is the cellular equivalent of a cockroach who's still putzing around after a nuclear war. I was told to keep an eye on things and to report in if I had any pain. I had pain, so I reported in.

The last thing I expected---and I seriously mean that---would be to receive a call back later in the day, telling me that Dr. Academic would really like it if I came in to give blood for a CA-125 test and to have another Pet Scan done, as well. Well, hello there sailor! Furthermore, even though I had my three month checkup already scheduled for next week, they wanted to move it up to a day when Dr. Academic was actually in the office. It makes your head spin, sometimes, when a doctor freaks out, and starts ordering tests willy nilly.

It had seriously never occurred to me that the cancer might be back, but even after this information had been related to me, I still had a hard time getting worked up about it. I really didn't think the cancer was back and was fairly certain that he was freaking out over nothing. Yet, I nonetheless went in for the CA-125 (and, man, was it ever weird being back in that office after a three month absence! All those worried, exhausted, sick people of whom I used to be one. It's just a sad place to be when you're well.), and the next day went in for the Pet Scan, and then went about my business. I knew that if the cancer was back, well, that didn't bode well. The odds are that if ovarian cancer comes back after an optimal surgery (which I had) and optimal chemo (which I also had), "Ovarian Cancer" would most likely be listed as the cause of my death on my death certificate. As in it would be inevitable, unless I died from getting run over by a bus or a Benz-driving Soccer Mom gabbing uncontrollably into a cell phone. That's just how it works. That's the point where a cure is forever put out of reach; you will simply receive treatment to keep you alive, but you'll eventually die of ovarian cancer, at some point in the future. It might be next week, or it might be thirty years from now, but it will happen. It's very sad, but it's very true, as well. Even knowing this, I just couldn't get worked up over it. It just didn't feel like cancer, which, I'll grant you, is ironic given my original OB-GYN said precisely the same thing before my surgery, but, still, it didn't feel like it. Cancer for me means lots of pain and fatigue that comes out of nowhere and demands that you take a nap. I'm not having any of that. Despite the fact I'm still feeling some of the aftereffects of chemo, for the most part, I feel great! My body is working the way it's supposed to. And while I'm absolutely certain that you can probably feel great and still have cancer, I was fairly certain that I hadn't recurred.

It turned out that I was right, too. The test results came back yesterday and the nurse called me first thing to relay them. My CA-125 is at 5.6, which is fantastic and the Pet Scan came back as normal, as well. I know we're no further along in figuring out why I'm having pelvic pain, but we can sort that out on Tuesday, when I have my appointment.

I suspect it's the endometriosis that's causing the trouble. I've been on HRT since July, and have been feeling some weird things in that region ever since I started up, but there's been no pain, until now. Endometriosis feeds on estrogen, which is, of course, what the HRT is supplying so I don't have to suffer through hot flashes and the like. But I'm also receiving progesterone, the anti-estrogen hormone (it's the predominant hormone during pregnancy, which explains why I'm fat, fat fat right now.) and that was supposed to combat anything the estrogen might do in terms of the endometriosis. Dr. Academic hypothesized that what I was feeling was probably adhesions, which were being charged by the estrogen in the HRT. Now, I don't know if they'll be able to treat it, so I can still stay on HRT, or if I'll have to give up the HRT entirely. It would be bad for me if I went off HRT, not only because I freakin' hate hot flashes, night sweats, and weeping like a ninny every time I turn around, but simply because thirty-seven-year-old women are not supposed to be in menopause. Without the hormones, your bone density deteriorates and the chances for osteoporosis go through the roof, and since osteoporosis jumps from branch to branch in my family tree with the greatest of ease, that's something I'd like to avoid. One of my greatest (and stupid) fears is that I'll shrink---and that one was already in play before I got ovarian cancer. It also means that my expected life span, which is pretty much back to normal since the cancer went on its merry way, would be diminished. So, I need the HRT until I reach the age when I should have hit menopause, despite what it might do to the endometriosis. The benefits, for me, are greater than any risks that might come with taking it.

But then again, I'm not a doctor, so I might be entirely wrong about this whole thing. It was this weekend last year that I was certain I was having a gallbladder attack and went to the ER for help---and we all know how well that turned out. The timing of all this aside (which, honestly, is one of the weirder coincidences in my life), I'd at least like to think I have a better handle on all of this medical stuff. I didn't freak out, like I did back in November, about receiving the results of the pet scan. Perhaps just having more distance between the rigors of chemo over the summer and now has helped. Maybe being at the hospital and getting over some deeply ingrained fears held over from the time I spent there has helped, as well. I don't really know. But, come whatever may on Tuesday (and I suspect something will come, even if I don't know what it is. I've learned that when a doctor freaks out like Dr.Academic did, it's generally something and something will generally come of it.), I've surprised myself this week by handling this pretty well.

Lately, I've thought that I didn't have a lot of emotional reserves left after battling cancer for the better part of a year. I freaked out at the least likely of things, and didn't really have a good grasp on that gift from God called "perspective." I made more of things than I should have. This week was a bit of a wake-up call in that department. Strangely enough, you can apparently bring the threat of cancer back into my life and I won't freak out. Oh, sure, I'll think about it a lot but, for the most part, I won't let it bother me. I wasn't paralyzed with fear. Mostly, as I told the husband repeatedly, I was going to be pissed off if the cancer came back. And I seriously meant that: all that...for what? Just to have to do it all over again? How fucking unfair would that be? What a load of hooey, I thought. I just don't have time for this crap! I feel well. I have been told repeatedly by all and sundry that it's time to get on with my life---only to have to put it on hold again because the cancer had reappeared? I don't fucking think so. And, yes, while I was relieved when the tests came back normal, it wasn't like the huge wave of relief that knocked me over when I received the same results in November.

So, it's been, on the whole, a very weird week. We'll have to see what happens on Tuesday, and on Friday, which is my one year anniversary, to see if next week trumps this one on the weirdness scale.

Posted by: Kathy at 12:27 PM | Comments (1) | Add Comment
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January 16, 2008

Carefree Hair

Yesterday, whilst I was volunteering at the hospital, I was in the employee-only elevator, a wheelchair before me, on my way to the third floor, to give someone a ride to freedom. A lady got on on the fifth floor and in the time it took to travel one floor, she gave me a thorough vetting and decided to open a conversation.

"I really like your hair. It's so carefree! It must be so easy to manage. I often think about cutting mine all off and starting fresh, like you."

The woman's hair was about three or four inches longer than mine.

"Uh," I replied, not really knowing what to say. "Thanks, but I'm in the process of growing it out. I lost all my hair when I went through chemo."

I didn't look at her face when, mercifully, the elevator arrived at my floor and I got out, but the volunteer I was with, who was charged with my continued training, was chuckling, so it must have been good.

Posted by: Kathy at 12:53 PM | Comments (1) | Add Comment
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January 10, 2008

This Could Be Interesting

I had to pick up a new prescription today.

One of the lasting side effects of the chemo is nerve damage, or neuropathies in fancy medical speak. I've been having issues, to varying degrees, with numbness and shooting pains in my hands and feet since my last taxol treatment, way back in the middle of July. The numbness has resolved itself, but unfortunately the shooting pains have not. Dr. Academic is sure they'll go away, eventually, but he can't give me an estimate on when "eventually" might be. I have faith that they will go away, though, so it's just a matter of suffering through them until that happy day comes along.

The problem with nerve damage is that temperature shifts can bring the pain out, and the fact that the weather keeps switching from above freezing to well below isn't helping matters any. It's just a simple fact: if my hands and feet get cold, well, out come the little pains that shoot down said appendages. I hadn't been expecting winter to be so bad that I would work my way up to a two vicodin a day habit, but I have. That I've started working out isn't helping matters any, either. Yesterday, I called in to chat with the nurse to see if there was anything else I could do for the neuropathies other than swallowing more narcotic pain killers than I would like. She said, yes, let's try neurontin, which originally was developed as an anti-convulsant for epileptics, but turns out to work fairly well on nerve pain. Or so they say.

I picked up the prescription today and I was reading through the possible side effects. I quoteth from the sheet that came with the bottle of prison jumpsuit-orange capsules:

Side effects that may occur while taking this medicine include tiredness, drowsiness, dizziness, tremor, back pain, dry mouth, constipation, increased appetite or an upset stomach. If they continue or are bothersome, check with your doctor. CHECK WITH YOUR DOCTOR AS SOON AS POSSIBLE if you experience decreased coordination, changes in vision (double or blurred vision), back and forth eye movements, flu-like symptoms, persistent sore throat or fever, swelling of ankles, mental or mood changes, memory loss, or trouble speaking. If you notice other effects not listed above contact your doctor, nurse or pharmacist.

Why am I again getting the feeling that the cure is worse than the disease?

Given this, the vicodin might actually be the better option.

Posted by: Kathy at 12:13 PM | Comments (2) | Add Comment
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January 08, 2008

Keeping the Karma Flowing

Since we are without a car, we rely on public transportation and the odd cab and car service ride (which I really wished happened more often than what it actually does) to get us where we need to go. Usually the bus does a fine job transporting us from point A to point B, and in the case of my cancer treatment, actually made things easier. The bus runs about every fifteen minutes or so and dropped me off right in front of the hospital, from whence I would make my way through a lobby, down a long hallway, into an elevator, down one floor and then down a long hallway, from whence I would enter a tunnel which took me to Dr. Academic's office building. It was a pretty sweet situation, and it actually worked out better than if I'd driven down to the office, because all the parking at the hospital and Dr. Academic's office is pay. (Which, if you ask me, is just adding insult to injury when you find yourself in the hospital or stuck in a recliner receiving chemo for five hours at a shot.) Right before entering the tunnel, I would pass by the volunteer office, and every single time, I noticed it. I couldn't have told you what else was in that hallway, but I knew precisely where the volunteer's office was.

It's like someone was trying to tell me something.

For once, I listened.

A few days before Christmas, I was down at the mall, which isn't very far from the hospital, and I had some time before my bus came, and the idea that I should finally hop over to the hospital and look into volunteering came to mind. So, I meandered my way over there, entered the office and asked how one came to be a volunteer for the hospital. I was promptly handed a fat envelope, and was told to fill out the application and to mail it back. The week after Christmas, a lady called and asked met to come in for an interview, which I did. I was approved for service, obviously, and last week had an orientation session where I was shown around with a young girl, who is obviously only volunteering to add it to the "community service" section of her resume for her college applications. I received a maroon smock, had a horrific picture taken for my ID, and was given the barest of tours. The girl and I had a good laugh as we were made to watch a volunteering video circa 1985. ("Were you even born when people were wearing shoulder pads that large?" I asked. "No, thank God," she replied. "Yeah, the eighties were pretty heinous in terms of fashion." "How old were you when this was made?" she asked. "About your age." I spied her Uggs and thought she might regret them when she got to be around my age, just like I regret my old moon boots.) When the videos were done and we were quizzed about how to do blood bank runs, HIPPA regulations, and what the various hospital codes were, we were scheduled for our training shifts.

I had my first one today. I'm now a "Step Force" volunteer, which means, if someone needs something run around, you're the one to do it. We discharge patients, we do blood bank runs, we run samples to the lab and pathology, we pick-up patients from X-Ray and ultrasound and the like. The gentleman who is training me in has got to be around seventy-five or so and is completely spry and knows every single person in the hospital---I swear to God there wasn't a moment on every run we made that he didn't say 'hi' to someone or even joke around with them. Chattiness aside, he was apparently the right person to show me around as he knows the hospital like the back of his hand. I got the hang of it pretty quickly, and he had me discharging patients by myself well before the end of my shift---something I'm not supposed to be doing for two more shifts. He thought I did rather well, for the most part, but encouraged me to come down and walk around the place in my off hours to get my bearings better. I kept getting turned around every time I stepped off the elevator---and I stepped off the elevator a lot today.

It was weird being back in the patient areas of the hospital, particularly when the Step Force dispatch center is right down the hall from the room where I was incarcerated for a week after my surgery. It brought back many, many memories, but it was also good in that it reminded of some of the good ones, too. After I was released, it was easy to think of the hospital as the place where I found out I had cancer, and spent a horrible week trying to get better after severe surgery. Now, I'm reminded of the fact that this is the place people go to get better, and where the doctors and nurses and hundreds of other people work hard to achieve just that goal. Once you're out of the place and at home, you forget that the place has a rhythm to it, and that rhythm can be very comforting at times. It may not sound like a big thing, but really it is. When you're like myself, and have had your entire world thrown on its head in such a short space of time, the little things, like simply knowing when your food will be delivered, and when your nurses and nurses' assistants will come in to check your vitals, is, in a very weird way, comforting; it brings some order to your very chaotic world. I'm now a part of that rhythm, and it felt really good to give someone a wheelchair ride to the door, to home, and to the freedom that comes with good health.

When I applied to become a volunteer, they asked why I would want to do this, because they do have requirements and it's not just a job you can show up for when you have free time. You're on a schedule, you have to commit to at least three months worth of work, they have to do a background check, you have to have two Mantoux tests for tuberculosis, and blood tests to make sure you're immunized, etc. It's not a easy volunteering experience, in other words. They count on you to do what you say you're going to do, because things that need doing, even if it is grunt work, won't get done otherwise. I told them that the hospital had been very good to me and I wanted to keep the karma flowing by helping out, if I could. I told them my story and while they all gasped in horror, they understood my desire to give something back, and, fortunately, obliged me.

So, other than the fact that I ran into Dr. Cindy Lou Who three times today and each time she failed to recognize me, and that my feet are now killing me (I wore a pedometer today. Turns out I walked almost five miles.) and I had to take a vicodin to deal with the resulting neuropathies, it was a good day. The karma has started to flow again, and I like that. But most of all, I liked that I helped to keep the hospital's rhythm going, so someone else could benefit from the comfort of it.

Posted by: Kathy at 03:57 PM | Comments (1) | Add Comment
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December 22, 2007

I've Got a Bad Feeling About This

So, my devoted Cake Eater readers, I haven't talked about my hair in a while, so I should probably remedy that, eh?

I actually have some right now, which is good. I enjoy the fact that I have hair now. It beats baldness...with a short, pointy stick, and it beats it easily, with little to no effort extended. Particularly since it's gotten cold outside and my head chills easily. Even though my hair is currently shorter than most of the dos you see on the average dude, I'm really beyond caring at this point in time. It's going to be ugly for a very long time and I've accepted that fact. Plus, I'm saving money on shampoo and product, as I don't use very much. So, there's that bonus, too, right? I should be counting my blessings, right?

Well, I think something's happening in regards to the hair and I don't know that it's going to be a good thing.

When I went to chemo class at the oncologist's office, they gave me this handy dandy expandable file folder (generously provided by Amgen, raper and pillager of cancer patients and their insurance companies everywhere), chock-a-block loaded with valuable information for those of us unlucky enough to go through chemotherapy. In it was one sheet regarding hair loss.

I thus quoteth from the sheet:

{...}Prior to hair loss, you may experience various sensations on your scalp such as tingling, itching or hurting. When you're able to pull out small tufts of hair, you will probably lose your hair within three days.

{...}It usually takes about six months for your hair to grow back to normal. As your hair begins to grow, it appears as "vellus hair." This soft, fluffy hair will last about two months. It gradually falls out and is replaced by more normal growing hair.

In about four months your hair may grow in curly. If your choose to have your hair colored, wait four months after your final treatment. The first time you have your hair colored, the color will not take very well, but the second time it should take normally.

It is best to wait six months after your last treatment to perm your hair. The recommended type of Perm is ISO Partin.

I did the math. The fuzz started coming in about a month after my last taxol treatment in July, so we'd be talking mid-August, for those of you keeping score at home. For about a week or two, it was simply comprised of white fuzz, that you couldn't see very well. Then the brown stuff started growing in, and by the last part of October, I felt comfortable enough with the coverage to go out of the house without my head wrapped up in a scarf. People stopped staring about this point in time, which was good, too. Right now, it's filled in nicely, and is sticking up in odd places, to the point where, if you catch me at the right moment, (like right after I pull my hat off) I vaguely resemble Billy Bob Thornton in Sling Blade. The hair is very fine, but it's my natural color, and Thank God, there's no gray coming in.

However, it appears there's a catch. You see, given the above information, I fully expected this brown stuff that I have now to fall out in October. But it didn't. It stayed put and I somewhat forgot about the fact that it might fall out. I knew that the new, and most likely curlier, stuff would come in soon enough, but after October passed without any hair loss, I somewhat forgot about it. Until now.

You see, for the past week or so, I haven't had any body hair growth to speak of. It's been very light and shaving, which isn't my favorite activity to begin with, has pretty much been kaiboshed. I didn't think too much of it. There's still a lot going on with my body, even lo these many months since the last chemo IV. I just figured it was something else, and it was nothing to worry about. As long as it's not painful or very disturbing, my general policy is not to be bothered about it. But yesterday, my scalp started hurting again, like it did when I lost my hair back in the spring. The best explanation I can come up with for this tenderness is that it feels like you've had your hair in a pony tail for too long. I know that doesn't help those of my devoted Cake Eater readers who've never had hair long enough to put back in a pony tail, but I don't know how else to explain it. It's just sore and tingly. Which, I don't think bodes well. It feels just like it did back then. Given the sparse information on the "four month out" period, I don't know if this means I'll go bald again, and then the regular hair will grow back in, or if this just means it's growing back, and will gradually replace the hair I have now.

Sigh. And just in time for Christmas, too!

I tried to call Dr. Academic's super-duper-helpful-with-the-information-nurse about this yesterday, but it turns she's out on maternity leave. (Seriously, I didn't even know she was preggers until I saw her last month. The woman didn't show AT ALL until the very end.) I didn't want to deal with the B-Team, because they always hand off conflicting, and sometimes wrong, information, so I left it alone. I'm somewhat in the dark right now about just will happen, but this year has been shitty enough all the way around, so it wouldn't surprise me one little bit if all the hair fell out and I was bald for Christmas, and New Years---and in the middle of winter, when it's freakin' cold outside, too. That would just be my luck.

Posted by: Kathy at 11:03 AM | No Comments | Add Comment
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December 13, 2007

Ringing True

Via the ever magnificent Sheila, I found this after following a few links.

{...}First, I think that, admirable as it is to have a National Infertility Awareness Week, the first week in November may not be the most appropriate time to bring attention to our plight. How about the first week of May, as we approach the agony and indignity of Mother’s Day? That’s when women inflicted with infertility wish and pray that people would recognize that all women who wish to be mothers aren’t. That when the minister preaches a sermon on the blessings of motherhood, and how children are a gift from God, the infertile women in the congregation can’t help but cringe inside and wonder, “why wasn’t I blessed with children? Why didn’t God grant me children? Was I bad? Did I offend Him? Does He not trust me with children? Does God think I would be a bad mother?”

{...}Finally, the week that for me would be most appropriate as National Infertility Awareness Week would be the week leading up to Christmas. How painfully aware is the infertile woman of her status during this time! Everything about the holiday season revolves around children. Santa Clause doesn’t come to our homes. There’s no reason to get up early and rush to our presents. There’s no excited eagerness, cookies left on plates next to a glass of milk, no working late at night as a parenting team to assemble toys. Even the life of the extended family revolves around children. The families with children get to make the decisions regarding when and where the extended family meets to celebrate the holidays. And the infertile women smile, and whither a little a little inside while trying to comply and not seem like a “whiner”. After all, we have no weight in the argument; we haven’t provided the grandchildren, we haven’t any stock in the Christmas get-together.{...}

Go read the whole thing.

Posted by: Kathy at 10:46 AM | Comments (1) | Add Comment
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