Showing posts with label pain. Show all posts
Showing posts with label pain. Show all posts

Saturday, January 18, 2014

The Things We Do

I sit here tired...no, not tired. Tired doesn't even begin to describe it. Exhausted. Bone-tired exhausted. I sleep every night. Sort of. I can get to sleep - a little quicker with a modest snifter of cognac, but I can't stay asleep. I wake up. Not just a slightly dreamy roll-over, full-on awake. Not just once, but three, four, five, six, sometimes even ten times a night. Every 45-60 minutes, I'm wide awake. I have to pee, my butt muscles are screaming at me to change positions, my shoulder is crying from the pressure of sleeping on it when it's still not healed. 

This morning we went to the reproductive endocrinologist again for another endometrial biopsy. This is the fourth? fifth? Honestly at this point I've lost count. I had one after the first failure, then I had several more trying to confirm that we'd gotten rid of a chronic inflammatory condition discovered after the first one, and then looking at whether the new drug protocol was working right in several trial cycles.

We did another two-embryo frozen embryo transfer IVF in early December and got the negative test on the 12th. We thought we'd cleared all the issues that we'd had going on during the fresh round and the cycles leading up to this.

The only thing I didn't know about the time, was that the doc wasn't entirely happy with what they saw on the last endometrial biopsy. Progesterone that occurs naturally or in our case, added through drugs, has several effects on the endometrial lining that make it an attractive place for an embryo to embed and begin growing. Apparently mine didn't look as happy and inviting as it should have last time - though all other signs were good, so he chose to proceed with the transfer.

I trust my doctor, so I don't know that I'd have made a different decision than that if I'd known, and honestly it's pointless to debate the idea.

We have one frozen embryo left. One last chance to get this done - or we're out. I don't have another $28-$30,000 to do another donor round short of winning the lottery, we've tapped all the resources we have access to at this point.

So this time around, we have to get things as perfect as we possibly can. So I've spent a full cycle on all the drugs, plus added Crinone - progesterone suppository gel, so nearly double the progesterone most IVF patients get during a cycle. Usually it's just intramuscular shots of progesterone oil, which is just a joy ride in and of itself. 1.5 inch 22 gauge needles in alternating butt cheeks at 4 or 5 in the morning, depending on when the Man has to be at work each day. I'm bruised and feel like I've been beaten repeatedly with a 2x4 across the ass every day.

I'm already on double the amount of trans-dermal estrogen with the patches (I wear two rather than one) - and instead of twice daily oral estradiol, I take it vaginally to help with absorption because apparently with my rearranged gut I wasn't getting enough of it through my digestive tract. Where a normal estrogen blood level for a pre-menopausal woman is 20-375, my levels have been running at 1400-2100 depending on how far we are into the cycle. The blood progesterone level isn't so much in question now although it's likely to be huge, but we're looking at the evidence in the lining from the biopsy today.

The sleep issues are, at least in good part, attributed to those massive hormone doses, and unfortunately sleeping pills are not an option during all of this. I spent quite a bit of time after the Nightmare sleeping with the assistance of Ambien, and dear God do I miss it. I'd trade 9 hours of my alleged sleep for 5 uninterrupted hours of Ambien-fueled sleep any day. 

So today I took another 3 inch needle internally for the local anesthetic before the biopsy - I'm thankful I don't have to see this part of it - knowing how long the ass needles are is bad enough. If the anesthetic really is reducing the pain, I'm not sure I'd want to know how much it really hurts, because honestly even with it, it hurts like a motherfucker. Hurt like a motherfucker squared is not really something I care to do.

So we wait now for the pathologist to take a look. The senior pathologist - since he and the doc reviewed my sample together last time. Doc is anticipating this will come in by Wednesday. Thankfully, I've been relieved of having to do the IM shots for the next few days, and I can give up the vaginal estradiol as well until the results come on. Should the sample be sufficient, we'll stop all the other drugs, let me have a period, and start it all up all over again. If the results are as desired, we'll do about 2 weeks on the two estrogens, another round of ultrasounds and blood work to check things out, and then both forms of progesterone again leading up to the final transfer.  If the results aren't as desired, he'll have to figure out another way to improve the progesterone action - which will mean another full test cycle.

In deference to my bruised ass, he did offer me a rest cycle, but there is something to be said for back to back medicated cycles that can encourage my body to get with the program and make a nice comfy nest for embryos. So despite the bruising and pain, I chose to have him go forward with whatever will become of the next cycle - another test or the real transfer.

I question my sanity in continuing this regularly - but I'd never stop questioning whether we could have success if we didn't see it all the way to the end.

I know success will ultimately lead to far more sleeplessness - pregnancy impacts it, having a newborn of course does, I just - I don't know. It's hard to consider it "worth it" right now - instead it's a barely tolerable side effect.

The things we do...



Saturday, May 12, 2012

I Was A Mother: For One Precious Year

I hate Mother's day; with an all-consuming passion. When I was a little girl, every few years I had to share my birthday (May 11) with Mother's Day, which made me feel cheated - in only the way that little girls can feel cheated by such things.

In 1992, when I was 25, I became estranged from my own mother. She's long had her own issues, but when I moved back to California from Washington and temporarily stayed with her, she transferred her anger over her own issues to me. I had plenty of my own things to deal with, and wasn't going to take responsibility for her problems (that were definitely not my problems) - so I moved out and haven't really spoken with her voluntarily since. One glaring exception was when I agreed to go to a family reunion in Kansas City, MO in 2006 - and only because both of my sisters would be there. Not really much since. There's too many additional things about my mother that aren't what this is all about, but I can't imagine we'll have anything resembling a relationship again.

After that - I spent time being annoyed at the generic "holiday" greetings thrown at people by retail or service workers; often under threat of discipline by their managers. People, please - don't throw such generic things at people. For Mother's Day - you cannot assume that every female of child bearing age or older is a mother. They may have just lost their mother, or lost a child. They may be living that special, lonely hell of desperately wanting to be a mother but for a variety of reasons have not been able to achieve that. Your generic "Happy Mother's Day" can make them anything but happy. It might just be a slight annoyance at the assumption, or you may find yourself with a woman suddenly trying to hold back sobs while putting her credit card back in her wallet and trying to make a mad dash to her car in the parking lot.

Just Don't Do It.

But for one beautiful day in May, 2010 - I was a mother. I've mentioned briefly that we used to be foster parents. Baby J came into our lives in early September 2009 when she was just 8 days old - freshly discharged from the hospital. She was the happiest, most adorable baby ever. With foster children, you cannot assume that you will have them for any specific length of time, though due to her birth circumstances we knew we would have her at least 6 months. To say that she was a delight is a historic understatement. While the Man hates photos, this one of the two of them when she was 6 weeks old speaks volumes to how we felt about her (her face is blurred, as identifying photos made publicly available were not allowed - though I think she'd be hard to identify from this photo, I won't take that chance. Those who have a Friends connection with me on Flickr have access to un-retouched photos.)


Early in 2010, as J approached 6 months old, we decided we were ready for a second child - we were licensed for two, so we told our licensing worker that we would open our home for another child, preferably one age 3 or under. 

Very shortly afterward, we got a call about a little girl T, who was 5 days shy of her 3rd birthday. I remember I was in the middle of a select luncheon at school with the former CEO of Wal-Mart -and my cell phone goes off. Out on the balcony of the building on campus I had back and forth calls between our worker and the Man, trying to decide if we should take the placement. I actually twisted his arm a bit (ironically) and we accepted. I had to return to school that night, so she'd arrived at the house about 20 minutes before I had to go - frightened, not wanting to leave the social worker that she knew, and clearly not sure what to make of Baby J, the Man, and the cats.  She crawled under the coffee table with a baby blanket and fell asleep, and wouldn't let either of us put her to bed - she slept there all night, and the Man slept on the floor with her. 

T arrived still in diapers, barely verbal, and with that dead, 1000-yard stare you see in shell-shocked soldiers, not something that should be on the face of a barely 3-year old child. We advocated fiercely and frequently for her, but very few of our concerns were addressed. By the time she had an early pre-school intervention she'd been with us 5 months, and had actually grown into quite a chatter box - though her enunciation and diction still needed more work than a developmentally typical 3.5 year old. 

So Mother's Day 2010 I was actually a mother. If anyone said or says to me I was "only" a foster mother, I'd have shanked them. No, these girls were not mine by blood, and not even mine legally except through temporary guardianship of foster parenting, but I was their parent. The Man bought me a beautiful card "from the girls" that talked about being Mom had nothing to do with DNA, but instead was about love. I cried. While I was slightly annoyed I had to share the day with his mother (something I had previously expressed not wanting to do) - in the end it didn't matter, we got to celebrate Mother's Day for me. 

T blossomed over the summer, but as she grew more comfortable with us the issues that were brought about by her background continued to come to the surface. We were continually dismissed in our requests for her as being inexperienced parents, or that she was "just 3" - both of which were true, but were not the root cause of the problems we were trying to solve. As fall came around, things just devolved. We gave it our all - we were committed to T, willing to go the long haul with her, but we weren't getting any support, and were specifically forbidden to seek some help we had been asking to be given. 

It came to a head in November in a way I won't describe here now - as I mentioned at the beginning of this blog I am still considering writing a book about it, but there's too much to it for a single blog post. On one awful night, the decision was made (by others) to move T from our home. In doing so, they chose to take J as well. We were heartbroken. J's case had progressed to the point where parental rights were being terminated, and we were in the very early stages of working to adopt her. She was 15 months old, and we were the only parents she had ever known. 

What happened afterward is an experience I'd not wish on my worst enemy. We spent months and thousands of dollars trying to regain custody of J, but in the end were blocked at every turn. Our relationship with our local social services agency was irreparably damaged. We were no longer parents, and were not going to be parents again in this way.

Mothers Day 2011 was beyond painful. We had just effectively come to the end of fighting for custody of J, the Man's mother was dying of cancer (she would pass a month later on June 8), and I was struggling to finish the last year of my MBA program. I think I probably did shoot daggers at many people who gave me that crappy generic "Happy Mother's Day" - I was no longer a mother, and it stabbed me through the heart every day. The girls' room had the door closed - like this black hole of grief kept at bay only by this small wooden barrier. I had to take the portraits down off the walls of the living room and the hallway - they were hidden away in that room, I couldn't bear to see them. 

As I began my weight loss surgery journey, Dr. Fuzz told me that he wanted all of his pre-menopausal female patients on birth control, as those with fertility issues often had their fertility come roaring back, often very soon after surgery. I rolled my eyes at him, but agreed. I didn't expect a positive response, but I also asked if he thought fertility might come back, would he consider allowing me to attempt an IVF perhaps a bit sooner than the 2 years they want most patients to wait - after all, I was 45, and at that age, every month counts. 

Fuzz told me that if I complied and got into my goal range, he'd consider approving my working with the reproductive endocrinologist again (we'd tried multiple rounds of injections without and with IUI in 2006/2007, but stopped short of IVF due to lack of funding at the time). I'm still 30-odd pounds above the top of Fuzz's goal range for me, but when I have my 6-month follow-up appointment with him on May 31 it's something I'm going to bring up. I just had another Depo shot the other day, so it will be a few months before that wears off, and any IVF attempt takes months of prep - I want to coordinate all of that appropriately. 

While I cannot yet bring myself to fully believe that this will be successful, I cannot walk away from the possibility of one last attempt at being a mother. Despite all the trials we went through during that time, and despite the horrific ordeal afterward, it was something that I desperately want to have in my life. 

Now in 2012, this Mother's Day is a year of transition. the Man's mother is no longer with us - something we'll definitely miss. I'm desperately trying not to eviscerate people who spout the generic Mother's Day crap. And finally, of course, I'm recovering from a month of hell with the fissures and surgery. I'll be doing my best on Sunday to ignore everything about Mother's Day - but I can't help but have that tiny bit of hope in the back of my mind that perhaps at this time next year, we may be expecting a child of our own. I can't believe it, but I cannot give up. 

I was a mother - for one precious year. Please, universe, let me be so again soon - for the rest of my life.




Monday, December 12, 2011

Two Weeks Out - Still Healing

It surely seems obvious to someone just reading this, but the recovery period for this procedure is much longer and tougher than it was for my exploratory laparoscopy done several years ago. There, while they made similar incisions and poke around my innards, this time they actually cut and reattached things, and rearranged my guts, rather than just poking around. It should not be a surprise that recovery has been longer, and will continue for a good bit more. But somehow I find that I'm reminding myself of that nearly every day.

We've finally got the scale issue settled down - I wrote to Amber, the program nutritionist, last week and laid out my concerns - she said it was absolutely typical. After such a major surgery - and it was major, despite being done laparoscopically - your body does hang on to waste, water, and all sorts of things as it tries to figure out what it will need to heal. In just the day or two after I wrote her, I was steady enough on my feet and apparently my body got back in the grove, that I was getting steady readings on the scale again - and wow, it really is sliding right off of me. That too shouldn't be much of a surprise, given that I've gone above 500 calories in a day just once since my return home - and that was something like 517.

I'm still quite hot and cold with what I can actually eat (vs. drink). At least half of my protein is coming from a protein shake - mixed with 1% Lactaid milk I get 32g of protein for a 1 cup serving. With my protein goal of 60-65g, two of those would fill that need. However, I'm trying to get the remaining 28-33g of protein from pureed items. That's been a challenge - their guide of 1 to 3 tbsp of food at a time has truly been my limit - even half a spoonful more than that leaves me with uncomfortable pressure in my new baby stomach. The toughest challenge still is getting all my water in - minimum of 48 ounces is a lot when you can't chug it - I have to remember to reach for the bottle every 5 minutes or so and sip, sip, sip. The best I've really done so far is about 38 oz. That's what I'll have to work on most this week.

I had been chatting with my dear friend Erica a bit before surgery, about how I was anxious thinking about what this would do to my "foodie" tendencies. I'll clearly have some sugar and fat restrictions that I'll need to work around, and of course there's just no going into a restaurant and having a 3 or 4 course meal anymore. There's no reason I can't eat amazing food, I'll just have to plan very carefully to be able to enjoy bites of all the dishes I want to taste.  I'm also a pretty damned good home cook as well - I have several famous dishes that are always requested for the holidays, and am very comfortable putting on a dinner party for 6-10 people. Obviously during the puree and soon-after stages, I won't be making full gourmet meals, but as the months pass, I'll eventually be moving toward 800-1200 calories a day. I'll be able to eat a full, albeit small portioned, meal. I mused about writing a cookbook geared toward the bariatric eater - portions sized for our needs, fats and sugars balanced appropriately, and even hints for when an item could successfully be turned into a puree.

The more I think about it, the more committed I am to undertaking this project - I'll be working on recipes as I begin eating more regularly. Erica's husband "R" has offered to test cook for me, and I'm sure more of my friends will join in that endeavor. I'll be challenging myself to use ingredients that I may have passed over in the past (I'm not a big seafood eater, and have a textural aversion to mushrooms), in large part to be accommodating to palettes that are different than my own. Ironically, much of my television viewing these past two weeks has been on the Food Network and the Cooking Channel - something you'd think would create unsatisfying urges, but it's not been an issue for me. Something can look very tasty, but I can skip right by it without thinking I'm hungry, or feeling the need to go rummage in the kitchen for a substitute. I've been watching, taking notes on inspirations, and generally plotting how I might go about all this. It should be quite fun. As I begin, watch for pages dedicated to recipes to be added to this site - probably in about 2 months or so.

So finally - the dirty details of my progress:

Tentatively off high blood pressure meds - taking home readings until I see surgeon on 12/29 - but have been within normal ranges.

Insulin dosage down by half, still taking oral meds. I wish this was going away quicker, but it should adjust as I lose more. 

Getting the exercise in - today's treadmill jaunt will be 13 minutes at 1.5mph - going up a minute a day and .1 mph as tolerate until I hit 20 minutes and 2 mph as my initial goal.

Today's weight: 293.4 lbs
Total loss:            44.6 lbs
Post-op loss:        10.6 lbs

Go me!






Saturday, December 3, 2011

Apparently I said "ouch"

Thankfully - when I got the call for my surgery time, they told me I was Fuzz's first of the day - I had to report at 6am, surgery scheduled for 7am. We went in, had a nice chat with the anesthesiologist about my bad experience the last time I went under, and he promised that he'd be very explicit with me in what he was doing, and let me have control of some of the mask pressure (which he did - I need to get his name and write to the dept. chair and thank him).

Apparently the first thing I said when the Man walked into my room post-op was "Ouch" and passed back out. I suppose that was succint!

Doc says that everything went really well, no concerns or complications. Obviously I felt like I had been hit by a truck, but they had me initially on an acetaminophen product and morphine, so I was also quite stoned, and slept most of the day immediately post-op. I did get up and walk part-way down the hallway and back.

Things you don't think about #392: For women at least, you have to relax a lot of muscles to pee - you don't think that it would hurt to do that, it took a lot of concentration to be able to relax the right ones.

Overnight Tuesday, my pain levels had gotten pretty high - and the lortab they switched me to (vicodin and tylenol) was really only taking the worst edge off it, and not relieving much, so they switched me to oxycodone. That knocked me back out, but it made getting up harder, as being settled in the same position too long made the gas move around worse when I got up. The hospital had incredibly dry air, so between cotton mouth from not drinking much, I also had painfully dry sinuses to deal with as well. I was allowed 2oz of 50/50 diluted grape juice an hour, so that didn't do much to help the mouth, let alone hydrate me elsewhere.

I was a good patient and walked the halls a much as I could, and was definitely doing better at it by early Thursday morning. Fuzz came and saw me about 9am and said he would discharge me, and the residents would be around a bit later to remove my drain (something they glossed over) and get all the paperwork done. Finally about 2pm they came - and the resident removed the tape around the drain, then asked if I was ready - after nodding, he pulled - and the Man says I got a look on my face like "the alien is eating me alive from the inside" - because the dude pulled out nearly TWO FEET of drain tubing. I had no idea - and will definitely be suggesting that people be prepared for that. Yikes!

We got home about 4pm Thursday - and unfortunately the Man went on a wild goose chase trying to fill the liquid oxycodone prescription for me - nobody had it in stock, at least anywhere near the quantity prescribed (yes, I know it's a highly trafficked drug, particularly in pill form). But, we'd filled the post-op prescriptions before going in, so I had the hydrocodone at least, and have been relying on it until we can get the oxy (should I still need it by the time it comes in to our pharmacy).

Being at home on the sleep number bed has been much more comfortable than the very stiff hospital bed, but the head tilt feature there was certainly nice. The Man has been awesome in taking care of me  - getting my meds every 4 hours, making sure I have water in my sport-top water bottle, and generally making sure I'm comfortable.


He helped me take a shower yesterday afternoon, which while it felt good, apparently took a lot out of me, as I didn't feel well enough after to be upright, so I spent the rest of the afternoon/evening in bed.

Today I've been up and sitting on the couch with a tray table with my laptop and my knitting since about 9am, which is definite progress. I'll probably lay down again shortly (next pain dose is due in 15 minutes), but be up again for "dinner". Yesterday I struggled with yogurt as part of my "full liquid" diet, but today so far I've had a protein shake, and have finished about 3oz of yogurt without too much complaint from my new stomach. Should be able to get the 2nd shake in, we'll see about anything else - as long as I get that protein, I'm not going to push myself for sugar free jello chemicals.

So many of my knitter friends have been wonderful about checking in on me and offering kind words of support and encouragement - I love you all. I'm definitely going to take things slowly, and work on doing what's best for me over the next 5 weeks while I'm off work.

Oh - the Man has decided that the scale is possessed - it says he weighs 15-20 pounds more than normal (he's not overweight, fluctuates only with a 5 pound range). So he'll be getting new batteries, and we'll likely be getting that new mechanical balance scale I wanted, so no updated weight report, but I wouldn't be surprised if I'm down in the 2s when we get me on it.