My brain is finally my own again. If I ever had any inkling to start abusing triple signature narcotics, this little round about with Mexafen (?) has cured me completely. I was very glad to have it the first 36 hours after surgery, but it became more a problem then a solution by Friday night. I was nauseous, lethargic, and sedated. I know that was kind of the point, eh? On Saturday morning, the nurse turned off the constant drip, and left me with the self-medication route. I could get 1mg every 20 minutes, which equaled the 3mg an hour drip I had on Friday. I was a little miserable on Saturday—I was quite fearful that I wasn't going to get enough, and yet I didn't want the drip back. There was the additional Toredal (?) that I was getting via IV a couple of times a day so I knew there was a back up; I felt stupid asking for it after the consult that resulted in a cutback of the painkillers. Sort of rock and a hard place. When the anesthesiologist came in to check on me Sunday, I discovered that I hadn't needed it, and I was going to be fine without it. I asked him to just take out the epidural completely because Dr. B had dangled in front me of the chance to go home that day. I was more than ready. Friday night when Dr. B came in to do round, N, my day nurse decided that it was the particularly nasty clear liquid diet that was making me sick (not to mention the narcotics). She went to Dr. B and lobbied for me to go on a whole food diet, and he relented. After all, I could always go back to the liquids if it didn't work.
Saturday and Sunday I got about 5 of the worst meals I have been served in my life, and I've eaten a lot of airplane food and stayed in a lot of hospitals. I say 5, because when I called the dietician on Saturday AM when I got toast and cereal for breakfast, to remind them that I required a Gluten-Free meal, they didn't serve me lunch. Flat out skipped me. Fortunately J brought me the best milk shake I ever had in my whole life—it was fabulous, and not just because I was hungry! The meal time regimen went like this. I would be served the horrendous meal that they deemed suitable, I would eat a little of it (and I mean VERY little), barf up that, then have Susie bring me something good. A waffle, an apple, some good soup, etc. I was tolerating food, just not hospital food! I pointed this out to Dr. B on Saturday when he came around, hence the offer to go home. I had met all of the requirements to go home by noon on Sunday (poop, pee and walk sufficiently). I had been telling everyone that I was going home that day, in hopes that by repeating it to enough people that it would come true by sheer force of will. Hey, it worked. {g} I also had to get out of there to get some sleep! Dang! I have low blood pressure normally, and with the amount of narcotics in my system, when they would wake me up in the middle of the night to take my blood pressure it would be what they considered dangerously low. That meant they had to take a second reading with the manual cuff not the automatic machine in order to get a more accurate reading. Lights, worry fussing. I had to remind them that 97/60 is a pretty normal range, so 80/40 wasn’t THAT low!
The weekend nurses, OMG. I had a very surly older woman as my PCA on Saturday and Sunday, and she was scandalized that I didn't want to go take a spit bath on Sunday, or have her change the sheets. "No, I'm going home." She huffed off like I was an idiot. After all, she had broken the controls on my bed Saturday when she changed the sheets. I had to camp out in a chair for hours while they brought down a new bed, replaced the old one, and made up the new one (and this on 0 drip on the painkillers). The weekday nurses were very good, and were all over me like white on rice.
Oh the funniest thing happened. Sunday, a cute little 20 something chickie came to my room, to give me some information about what a Gluten Free diet is. I thanked her, and told her that I had been adhering to a GF diet for nearly a decade, and that I had it pretty well under control. I guess they heard me screaming at them from the third floor! Everything I was served was absolutely bland, dry, and tasteless; the menu card had a disclaimer on the top that read "this is a gluten free diet, your choices may be limited" and I would yell "only by your imagination!" I don't think my roommate M appreciated mealtimes very much.
Poor M. In her, I had a graphic example of how badly things could have gone wrong. She was also one of Dr. B's patients, and when you sleep next to someone for 4 days, you kind of get the gist of what is happening. She had ovarian cancer as well, but she was diabetic, and had gastric reflux and a nasty bowel obstruction. She was on a full liquid diet (that included milk and pudding stuff too), but they were unable to do anything except surgery. She was going downhill fast; or else I was becoming cognizant of what was going on at a fast rate. She started throwing up one day, and the smell was bad, like shit. I remember sister S telling me a story about a man with a bowel obstruction, and he started throwing up things that had been rotting far far down in his alimentary system—that was pretty much the end for him. Once they start vomiting that stuff, they are usually so poisoned they never recover. I had to call the nurse for her a couple of times; she was in such distress that she couldn't reach the call button. They were going to do surgery in the following week, and she had a little visit on Saturday from a Gastroenterologist. J was there to give me the Milk Shake From Heaven (Shakey's, really) and it turns out that the G-man that Dr. B had recommended for M was an old friend of J's from high school! The thing is, Dr. B had offered me a referral to a G-man that he considered the best in the city; this is the one that other Gastro guys go to when they need information or help. A real top dog. So, Dr. Guido, J's best friend is likely to be my new Gastroenterologist if Dr. B has anything to say about it. It really is a Small World here in many ways.
Now, in regards to my rant about the food and weekend help at BMC, don’t get me wrong—I really felt that the level of considerate care and professionalism there is quite high. I just won't rely on them to feed me if I have to go back! I had anything I needed and the majority of the nurses and PCA's were extremely competent. Hey, I had a male nurse, too. Nice guy, he had the night shift from 11 to 7. The day nurse on Thursday and Friday, N was British and she was from Brighton I believe. I'll have to ask S if she remembers. The other nurse that stands out is the recovery room nurse, C. She had a sister named Shellee, and after I came around about 4:30pm C pretty much talked to me for a solid hour about not very much, but it was an interesting therapy. She had a nice voice, and she sounded very encouraging and reminded how well I was doing and how proud of me she was. I finally woke up enough for them to think it was ok for me to see visitors (I guess I asked) at 5:30pm. J, S and Boy Unit all came back, (K had left a little earlier) and they stayed for a few minutes, and talked to me, hugged me, kissed me. It was a profound experience waking from the dead to something like that.
So, I've been home about 10 days, and every day I feel a little more like myself. It took just about that long for the aftereffects of anesthesia and the epidural to wear off. I am only a few days away from the 2-week ban on driving to be over, though I doubt I'll be going very many places. Brother J has been here since the 19th, doing things around the house. He fixed the front screen door so it would close properly, repaired a leak under the sink, got me a drill, made a shelf and repaired the door on the bathroom cabinet and in general made lots of nice things to eat and kept me company. Although I felt guilty laying about and not doing very much while he was buzzing around. His family is going camping this weekend, so I'm encouraging him to go home on Thursday. He's needed there and he's wearing me out! LOL
Brother D is coming on Saturday, and staying to the following Sunday. It'll be good to see him, and perhaps we'll have a chance to get out a little and do some sightseeing. I'm frankly starting to go stir crazy. Aunt J is coming after that, and sister S will come on the 17th or so. I'll be busy entertaining people for WEEKS.
I watched a few movies this week. Boy Unit brought me Young Frankenstein, Buckaroo Banzai and 2010 on DVD, and managed to leave the Ocean's 11 DVD, too. That was a pretty clever movie. I watched all of them thoroughly—the Young Frankenstein DVD had a lot of scenes that had been cut from the movie, copies of adverts for the film, and a documentary about the making of the movie. I really enjoyed that; it was all quite fascinating. I've even considered going to Block Bluster, paying out Chris's massive late fees and renting a few more movies I haven't seen. Never mind that I have about 20 books to read, and about 20 books on tape, about 5,000 photographs to scan and two stories to write. One is a short Smallville piece for a round robin, and the other is a far more ambitious project. It revolves around a story from the late 1800's and the development of the Canadian rail system, and the odd psychic connection that a contemporary character has to that story, and his story about writing that story. I have plenty of time to work on it; I just have to decide how historically accurate I want to make the B story. I could make it a 20-page knock off, and damn the facts; or I could take 50 pages and weave some real stuff into that. I have spent the last 6 months honing the characters in my head, and building them from scratch, so it could stand on the characterizations alone. But as tempting as that might be, I have a feeling I'll end up going for the more historically accurate story. Give me something to think about.
When I first came home I had to take some Darvocet or Vicodan every few hours, but now I'm down to only one or 2 a day total. I had thought that if I came out of this with as small a problem as an addiction to Vicodan, I would be thrilled, but I'm pretty sure I won't have that problem. I've built up enough tolerance to them that the one gives me no buzz, does the job, and frankly I'm tired of being sedated.
Right now life is as bucolic as it can get. I get up, eat breakfast, drink coffee, play on the computer, eat lunch, sit on the porch, watch movies and then go to bed to watch Star Trek at night. Sometimes I vary the whole thing by sitting on the porch in the morning, and playing on the computer in the afternoon, and reading in the evening. It's dogs' life I tell you.
So, the eve of the eve of surgery. I've put the mailing lists on hold, and as usual I feel woefully unprepared. It's only for a few days that I'm going to be out of circulation, but it feels like a brick wall that I can't see around; despite that the surgery itself is not that much more involved than a hysterectomy. Been there, done that, gotta picture. Speaking of which, Dr. B said he'd take a picture for me, and let me post it on the internet—what a guy! I bet you were just dying to know what tumor-riddled innards look like, weren't you?
My first ex-mother in law called me on Sunday. L recounted to me in great detail her ordeal with ovarian cancer last year. They went with radiation treatments for some reason, and it was about 6 months of daily radiation. She's still taking oral chemo treatments, and it's been just under a year for her, but she is doing fine, regaining her strength and doing all her usual L things. I also had a young man knock on my door to sell me a home alarm system, and of course I answered the door sans hat—I don't wear them about the house. We chatted about the neighborhood and stuff, and then of course the bald head brought the conversation around to cancer. He said he'd been battling colon cancer for 3 years. He'd been through the gauntlet at not only Baptist and U.A.M.S. here, but he'd also spent about 6 months at M.D. Anderson in Houston. Major surgery several times, radiation, chemo the whole nine yards. He'd been fired from ADT (bastards) and his wife left him during all of this, and he was still taking up to 13 drugs a day, five of them for depression. He's out of the woods basically, but he still goes back to his support group whenever he's in town. ADT hired him back (said they approached him), and he was all over the tri-state area selling alarms. Loves little dachshunds, showed me a picture of them. It was odd, I guess. It seemed normal for a complete stranger to open up and tell me all of this stuff. I think my invisible sign that says "Tell me your story" was underneath the hair—the naked scalp makes people want to share. Not that I mind really. It's good to get some more perspectives.
Today was the last day for work for the next month and a half. I really feel rotten for disappearing after only 110 days on the job. K told me that it wasn't an issue, I had done a good job so far, and they were anxious for me to get well. They will get a temp to come in and handle a few things and help A with the stuff while I'm out. Still feels strange to just let it all go for now. They decided to NOT tell any one they hired that the last two people with that office died or got cancer. Probably a good thing, eh?
S arrived today with enough stuff to fill up the jeep so far that the bags had to go on the roof. I got a LOVELY summer frock (I need 10 of these) in black with pink blue and yellow flamingos—it's really quite fabulous. She made a matching bandana, so I'm like in hog heaven. Sadie came too—and she doesn't like the back stairs, and has exiled herself to the back yard. The cats are eternally grateful that the German Shepard is out there. I don't think the idiots have even realized what is out there—they just know that the back door is mysteriously closed now. I feel like Lovecraft—just knowing that the Cthulu dog is out there, and I can unleash the Terror on them at any moment. Hell, it would do them good, and keep them humble! Chester was glad to see S, but ignored Sadie. His little sister Laura has gained a ton of weight, and is now Fat Laura—apparently B didn't realize that the dog would eat all the cat food every time she put some down.
Boy Unit is supposed to come up tomorrow. He got a paycheck, the last one from Groupware, and he was going to wait for it to clear the bank. I didn't think to tell him that he shouldn't have to wait for an electronic deposit to clear. I had to tell him the other day that there is a phone # to call and find out what ha cleared the bank, and to chek and see what he had forgotten to write down in the check book. I don't think the suggestion made a very deep impression.
I'm getting a chance to make a nice present for S to take to her mother in law, E. E is so nice—she called me a week or two ago, and chatted some. She is one of those stellar human beings that is always wonderful to talk to. S wanted me to copy some stuff for her, and I'm making labels and covers for them. I think she'll be pleased. And I get to play with all the toys I've got, scanner, CD burner, labels and a smashing printer. I just have a ball doing stuff like this.
weird thing happened thursday night-- A guy who was walking in front of my house got mugged for 3 subway sandwiches. It was teenagers, and Im sure they thought it was a lark; I'm glad I have a dog that very vocal. I guess this means I should start locking the doors?
from the 9th of May
I’m starting to lose my focus here at work, I have like three days left, and it’s hard to concentrate here. Too many projects left undone, and I’ll not benefit by their solutions. On the other hand I do have a few things that were accomplished, and after only 105 days on the job, I can say I’ve done pretty well.
I have a lot of things I need to do at the house, too but by the time I get home I’m zapped, and it’s all I can do to read. Went to get lab work today—the white and red blood cells are just at low normal levels, so that is a plus. And I seem to have licked the cold that was threatening last week with the judicious application of antibiotics.
The good news is I have a new obsession that I’m working on, Smallville. I missed most of the first season because of the second job, and then moving, but I plan on catching up on all of them. It’s gorgeous and fascinating with barely a hint of the 90210/Dawsons Creek teen angst thing. Tom Welling and Michael Rosenbaum don’t detract from its charm, either. For the frst time in nearly 2 years, my desktop has someone beside Nick Lea featured. At least people se Clark and say, oh yeah I know who that is!
Surgery is 1 week from today, and dammit I’m going to miss the opening of Attack of the Clones. Drats. I suppose it will run for a few weeks, and I can catch it this summer, but it’s the first Star Wars movie for which I have missed the opening night since A New Hope. However in honor of the occasion, I’m going to go ahead and bring in my life size Darth Maul cardboard cutout (courtesy of the fine ladies in Houston) to the office so we can all have a laugh over it. I fully expect it to be commandeered by my boss—he has pretensions to the Dark Side.
On the other hand, surgery is in a week. I have to get a few things cleaned up so that my caretakers will have a place to sleep. I’m mired in insurance paper work so I can get some things settled, and its so confusing! I had the nurse at Baptist compliment me on being so organized. I said thank you and laughed on the inside. Organized is just a layer that gets added on to the outside—it has nothing to do with me, really. We barely speak. The paper work for the will and stuff still needs to be finished too. Pronto!
I got some lovely presents in the mail: some tapes I ordered, a tape of live Nick Lea TV performances (Clark Kent will have to be content to share the limelight with that obsession) some PC programs and some smashing memorabilia from S, and some lounge wear, bandanas, tape player and stuff from my sister. A real bonanza! I will have some time to sit down and write thank you notes soon I think. I have a lot of correspondence that I need to catch up on, in general.
All of this really adds up to me trying not to worry about it all too much. I have to just keep going through the motions, because frankly there isn’t any point in worrying. It just makes you crazy. Like I need any help in that department!
today we have a guest blog. this is a letter I got from a friend, and it was so moving I thought I would share it. Yes she said OK. It really contains some food for thought (pun intended) about what we eat and the problems it can cause.
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Hi Doss,
Well, many thanks for the link to your blog.....yes, it made me weep a bit....I have nothing like your problems, but I know the fear and tears in a small way because there was a definite suspicion that my 'fibroid' might have been a leiomyosarcoma because of my age (I'm hitting the big five-oh) and coupled with the unusual fact that the tumour grew from something the size of a pea to something the size of a melon all in a year. Gynaecologists said I was too young to have a sarcoma (they would, wouldn't they?) My gp said not so. I wasn't on HRT, so he was suspicious.... So I waited. And waited.
Like you, I read online endlessly and sure enough, the leiomyos peak around 50. The perimenopause sarcoma, they are called. Deadly, no cure, unresponsive to any treatment, fast metastasising, and the average life expectancy upon post-hysterctomy diagnosis was about a year. Two percent of intramural fibroids in women at peak age for sarcoma, turn out to be leimyosarcoma. The age incidence is from 45 to 55. I feared the worst. I knew my own oestrogen was crapping out beause of the usual menopause
symptoms of drying skin, etc, though I wasn't yet post menopausal. So where was the big oestrogen whack coming from to give such a spurt to a fibroid at my age? - they being oestrogen/progesterone dependant? I couldn't see that it could be anything other than a sarcoma, I reasoned. Every new symptom seemed to confirm it, though I knew that the symptoms were identical in the main to those of a fibroid. My gp even told me what to expect if I were to end up having a Wertheim's hysterectomy and that he would refer me to an
oncogynaecologist immediately it was necessary.
So I cried. Like you, I was alone with it. I joined a gyncancer list. I joined Exit, the voluntary euthanasia society (I had no intention of dying in pain), I made a will, I gave away many of my books and things to reduce the litter I would leave behind me so my husband would have less mess to sort out. I spent weeks delivering clothes and such like to charitable organisations for cats in my town.....they thought I was wonderful (the people, not the cats). Little did they know. I hugged my old cat and wept into his fur, to his distress. He meowed at me. He has since died anyway - he was ancient at 20. What an age for a cat. I wished I was him. I also
hoped he would die before me because he was a dependent creature in his advanced years, and had become timid through going deaf. He was like a little old man. I feared for him on his own with my husband at work. The cat followed me around and would copy my actions. Copycat. Lol. That was so true of him sometimes.
I worried about my garden and what would become of it, since my husband doesn't do it. I wondered how he would cope with a good diet, knowing how sloppy he is over cooking for himself. P___ and I discussed palliative care and nursing homes.....I asked him if he would sell our bungalow afterwards and that made *him* cry. I wrote a farewell note for my website. I wished I could have finished it, etc. I began a farewell letter to my husband thanking him for being a nice person.....After all those weeks of wallowing I felt better.
God, this is morbid. But it's also true.
So it was a fibroid after all, it's growth spurt probably caused by diary oestrogen and my weight gain at the time. Just enough to send it haywire. White fat is a good producer of oestrogen too. I was big on milk and yoghurt and cheese and cream...
Anyhoo, months before my operation, working on the assumption that I could do something constructive about things, I reduced my dairy diet and increased my consumption of organic everything - veg, fruit, some soya (it has it's own drawback when used as a large part of your diet), cut down on oestrogen-packed chicken and beef, ate more fish a shellfish. Hm. I lost 20 pounds before I had my hyst, and have lost another 7 since, Back to my old weight now, which is encouraging.
What I'm getting at is simply that gyn cancers (ovary, womb), breast cancers - and prostate too, it's believed - are heavily influenced by dietary oestrogen and environmental oestrogens - it is fed to cattle and chickens certainly, to fatten them cheaply and give cows a high milk yield....so we live in an oestrogen dominanant world. You no doubt know this. I can't imagine your not knowing by now. I belong to a hysterectomy list too, and women on it have attempted successfully to control all kinds of gyn symptoms by dropping dairy foods from their diet and going off the pill. Drastic. I read of a woman who sent her own ovarian cancer into recession by stopping
HRT and going strictly vegan. It had nothing to feed on any more. I read of women ridding themselves of their advanced breast cancer by dropping dairy food and going organic too - organic veg has reduced levels of pcbs and dioxins - some common pesticides mimic oestrogen in the human body. Blah blah blah. I could go on forever.
I'm not recommending you do anything like this. You'll work out your own recovery, but it's food (no pun intended) for thought. But it's never too late to couple your own self-help with your consultant's treatment and see how you get on. You've nothing to lose. I've read a couple of books on controlling cancer by diet, and they make absolute sense to me - without getting too faddy about things, from my own pov. I try not to get carried away.
Please don't feel I'm preaching at you! That's not my intention, and forgive me if I'm only pointing out the obvious to you - I don't know if you still have ovaries or if they went at the same time as your fibroids - I know you don't need ovaries to get ovarian cancer, though. And a diet rethink is time consuming and costly, and then you have to go search for the foods you want.
You are brave in telling your friends and family about your cancer. I've told no family member about my hysterctomy - don't know why really. I did tell a couple of close friends, but that's all. But I'm sure you'll use their support as much as you need to. It's a big help. When I was worried about sarcoma, my husband's friend J____, who's gay, was very kind in that he'd phone me a couple of times a week to see how I was doing. I did appreciate that.
Hope this hasn't come over as a rant, Doss! I mean well. I daresay once you're home from your surgery you'll be planning what you intend to do for your immediate future. Let me know how you get on, and lay in plenty of vitamin and mineral supplements for getting over your chemo!
hugs and kisses,
S.
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