Tuesday, June 14, 2011

lowering my expectations

I've been reading cancer message boards and blogs on and off for almost two years now. I've learned so much from others who have gone through similar situations as myself. I've learned how lucky I've been, not only in my early diagnosis, but also with what great care I have received from my doctors, the hospitals and staff. I guess you could say I was pretty spoiled. And to be fair, my recent experience is still tame compared to some of the stories I've heard so I'll try and keep my anger from seeping into this story (but the disappointment remains).

Several months ago I meant to write a letter to my former hospital in utah commending the many fine doctors I had there and the good to excellent care I received during the 4 procedures I had done. Of course, it got away from me and after all this time, it probably wasn't going to happen. But the care I've gotten lately has renewed my interest in letting them know they should keep up the good work. I mean, who here has labored over a job with little or no feedback and wondered if your efforts were worth anything? When someone does a bad job, it usually gets mentioned but when someone does a good job, it often seems to be taken for granted. You may know deep down that you are doing great stuff but if no one seems to care, are you going to keep giving it your all? So anyways, I'll be following up this post with a thank you letter to my former hospital. And maybe, eventually I'll be sending a disappointment letter to my newest facility. I need to finish up my treatment there and let my anger dissipate.

I have been with my new institution since january as a result of a move and new insurance provider. First of all, let me just point out that not everything has been awful. So far I'm happy with my primary care physician. Even though she is pretty new to doctorhood, she is pretty responsive to my questions and concerns and isn't afraid to bring in the specialists when needed.  She is even familiar with brca mutations. I've seen her a couple of times and it was pretty prompt and unchaotic. I appreciate that. I haven't had to fight for my surveillance tests, or bug her to follow up on any promises. So yay her and her department.

Secondly, yay radiology! They caught my newest cancer. That is the most important thing of all. The images on my mri were of little significance however they factored in my bc history and my mutation and despite thinking that all would be benign, decided to run more tests. So it ain't all about saving money at this place. And looks like I didn't have too much more time to fuck around. My final pathology came back as noninvasive but it was the highest grade and I'm not sure it would have remained tame by the time my next test was due. So yay to them, I am grateful.

Thirdly, I really appreciate my certified diabetes educator and her department. She is awesome, speaks like 5 languages and runs all kinds of programs for all kinds of diabetic folks. She understands the complexities of the disease. How it is not as simple as counting carbs and injecting insulin. It can be a mind fuck. And when I started seeing her, I learned some new things and brushed up on some old things and started to get my diabetes on track. But as the time got closer to cutting the bitches off, I fell off that track. And she was there. Not to scold me but to find out why. And she understood why. I'm a comfort eater and I needed some comfort. As surgery got closer I ate more and more. And it fucked up my blood sugars. She was only a phone call away and she had this tricky way of getting me to promise to call her each week on a specific day. She is a wise one and is used to us slippery diabetics. And she knows how stress can really mess us up so she focused on just getting me to surgery with some decent numbers despite my eating habits. And she helped me after surgery when my numbers were fucked up because of surgery. And now I'm back on track, and no infections have gotten me yet despite the diabetes. So yay her.

And now on to the surgery department. Ugh. I knew better. I had my misgivings from the first day but I was worn out with this fight and just wanted to get things done with. I thought about going to a different, smaller facility within my provider but I didn't want to go through the effort. This department is large and chaotic. Information does not flow freely and I had to fight for every little tidbit of info I could get. I had to call and ask about what drugs they wanted me to stop before surgery and when. They didn't list any of the herbal/vitamins I was on which worried me, especially since I bled so much after my biopsy so I discontinued those on my own. They never officially sent me anything with my surgery date so I worried that it wasn't really going to happen. I saw my doctor once before surgery in her office and we left many things up in the air. She didn't follow through with any of the things she was going to look up for me. I searched for weeks on any info I could get on the sentinel node biopsy and whether that was the right way for me to go. I spoke to her nurse twice about it and she said the doc would call me but it never happened. I finally emailed her with some questions and she answered two out of the five questions. Where I wanted a discussion, she gave me her decisions. I don't know why this upsets me. It is typical of what you would expect from a surgeon. Maybe I'm angry because I assumed she was like my last surgeon. Shit, they don't make many like her. She still gives me the time of day even though I don't even live in that state anymore. My wt calls my new surgeon a bitch because she's so loyal to me and knows how upset I've been. Honestly though she's not a bitch. She is nice in person and at our one office visit did let me do most of the talking and tried to answer my questions. It's just that she is pretty inaccessible and doesn't have a lot of time. No yay for her or her department and I haven't even gotten to the surgery yet.

The surgery time is given the day before surgery and I asked a couple of times if they were going to try and have mine early because of my diabetes. I was told that priority is given to the elderly, the very young and diabetics and they would do their best. So when I called and was given the surgery slot of 2:45pm I was upset. As anyone knows, the later in the day you are scheduled the more likely it is that your surgery will be delayed. I don't use my diabetes to try and get out of things or as an excuse for anything and early surgery slots are like the only perk I look forward to. Ideally, you want to go into surgery with a blood sugar between 100-150 so that you don't drop too low or raise too high. One can kill you and the other can cause complications. So fasting after midnight and up until surgery is stressful. It is hard to control your sugars when your routine is unlike any other day of the year. And of course, my surgery got pushed back to 5pm. I wasn't happy at all. Amazingly, my blood sugars were great during the actual surgery even though they were a little high all day. So yay to the anesthesiologist! I was still awake as they prepped me on the table and started doing the timeout before surgery started. This is when they make sure they have the right patient and are doing the right procedure, etc. My doc was going thru the list and announced that I wasn't diabetic so they didn't have to worry about that. Lucky for me two or three voices spoke up and said I was. Boo doc.

The rest of my boos go to the hospital. I was brought up to my room around 8:30pm and my sugar was still ok but starting to creep a little high. Mostly because of stress and because of surgery, throwing up, changing my insulin doses because of the fasting. You name it. The nurses checked my blood sugar once more before bed, gave me a little bit of insulin and that was it for the rest of the night. I guess the policy in place is to check blood glucose before meals and bed. That would be ok in a normal situation but not after a day like mine! I woke up around 3am and tested at 298 and called my nurse. Someone came in and I let her know I wanted to get up, I wanted pain meds and my blood sugar was too high. The nurse came in and took care of everything but the blood sugar. I should have said something but from my past experience in hospitals, the doc would probably say wait until breakfast to make adjustments so I let it slide. Then I woke up at 6am and tested in the 400's. What does that mean? Means I'm lucky I didn't slip into a coma from my sugar being way too high. I think that it was twice as high as when I was first diagnosed with diabetes. So I dosed myself with my long-acting insulin, called dw and instructed her to bring me some breakfast since the hospital wasn't going to feed me until after 8am (40 hours without a meal) and dosed some short-acting insulin to get my sugar down. I then dosed some more insulin when dw got there with my breakfast. About an hour later the morning nurse came in and tested me. Still high but starting to come down. She was a little surprised that I had given myself insulin and had eaten already. Usually, I give them the courtesy of getting my meds because I don't want to get anyone in trouble but I didn't care at this point. They should have been testing me every 2 to 4 hours if you ask me. My surgeon came in just as I was about to get discharged. I told her real quick how bad my sugars were and she said oh, we should do something so you don't end up back here. I "joked" that I was never coming back and we left it at that. Really, they should have tested me for ketones with numbers that high but I made it home and seem to be in ok condition now.

One and a half thumbs down for the hospital. I have to give them a half thumb up for always answering my call button right away and my resident doctor was pretty good. The morning nurse was also very nice in going out of her way to print me up some post surgery exercises and to get me out of there quick cuz I was in such a hurry. So far, one thumb down for my surgeon. The other thumb will depend on how nice my scar looks after this tape finally falls off and I can get a look at it.

Well, thanks for letting me get that off my chest (ha ha)! I'm tired of bitching all the time lately and want to go back to the days of going on beautiful hikes and posting nice pics. I will post some pics of my scar after the tape falls off so my brca sisters who are thinking of no-recon have an idea of what to expect. Thanks to all my family and friends and everyone else who has supported me through all this and stuck by me. I'm almost done whining, I think:)

Wednesday, June 8, 2011

a bitch of a patient

What makes me a bad patient is exactly what makes me such a good caretaker. When I'm the one that needs help I'm a bitch. I have no patience. You can see my frustration written all over my face. I don't follow all the rules to get better. I want to be better now and do normal things now. I want to be in charge and don't trust that you know what's best for me. If things don't go the way I expect or want, watch out. I guess I'm more of a control freak than I thought.

When my residents are upset and swearing (most of them don't go this far) or complaining or bemoaning life, I do not react. I remain calm, I don't take it personally or lash back at them or stiffen up. I get it. I let them speak their mind and I show empathy. Then I try and find ways to make them feel better about the situation or themselves. Of course when things go wrong for them it's on a more permanent basis than me, but I can imagine their pain. I've had enough surgeries now in the last couple of years to burn it in my head that I don't want any more. Can I get a "fuck yeah?!"

Don't worry, nothing has gone wrong with my recovery so far. I'm just reliving surgery day (dw says I was much nicer after the ativan) and some of my frustration today when I couldn't go to a post surgery physical therapy workshop that I had hoped to. Of course it is too soon for me to be doing some real physical therapy. I still have my drains in and my steristrips on. My incisions are probably not sealed yet - I have yet to see them. I don't want to tear any stitches or wreck my scar or have to start the healing process all over. But that didn't keep me from hanging up on the physical therapist or bursting into tears of frustration afterwards. I didn't stay down long though. Called a friend who lives nearby who I met in cna school. Luckily she is back in the states and still as free as a bird so I will chill with her tomorrow. And it is nice out so took a stroll around the neighborhood. I am fortunate to be living in an area that is within walking distance of just about everything. I put my contact lenses on for the first time since before surgery and tee shirt and shorts. Dressed like a human being finally! I will need help getting this shirt off tonight though! Placed a hat over my greasy hair cuz I just can't manage taking a shower on my own yet and hit the streets. My first time out without something bulky to hide my flat chest. A panhandler called me beautiful:) Gotta love them! They will say the nicest things to try and get some change but it still felt nice that even with my ball cap and flat chest that he could tell I was a woman! DW got home from work and we took another stroll by the lake and got some tacos. It was great to be out among the people and not enclosed by 4 walls. Then put an old, favorite movie on, Blue Crush. Surfers, hawaii, cute actresses...turn that frown upside down!

Sunday, June 5, 2011

on my tip toes

I'm home. Back from the long dreaded surgery. The bilateral mastectomy. The girls are gone for good. The anxiety is gone. The tears are gone, at least for now. I'm calm, sleepy, a little fuzzy, a little sick to my stomach today. It's kind of a comfortable state to be in as I sit here and try and write, fighting the urge to close my eyes. Yet, it is ok to take another nap. Nothing is expected of me and dw is taking good care of me. I have good thoughts and well wishes pouring in from all over the country. Friends and relatives helping out close by. Rugby 7s on tv, books and magazines galore. Good food and treats nearby. Short walks with the dog.

I feel pretty good. Hoarse yesterday from the anesthesia and breathing tube but much better today. I've already switched from the pain pills to straight up tylenol because I think that is what is making me feel dizzy and nauseous. I am more in discomfort than in pain and most is in the armpit area probably due to my drains. I can feel the plastic tubing under my skin which is odd. I have limited range of motion but can lift my arms up over my head a little. Hence, I am standing on my tippy toes to reach things. Nothing heavy, just to grab a toothbrush or the like. I am already cleared to do some easy stretching. My recovery will be much easier than most because I have chosen not to have reconstruction, aka,  I'm flat.

Yeah, I've come a long way in this journey. Initially I was dead set on getting diep revision. That is when they make new breasts out of your belly fat. I wanted realistic looking boobs that would grow or shrink as my body fat did and would be warm or cold depending on my own body temp. After my hysterectomy, I changed my mind about adding more scars to my body and undergoing such a major operation. I thought about going the expander route and getting silicone breasts, like my wondertwin. Hers do look nice and all but I just don't have it in me to go through that tedious process of fill after fill and yet another surgery. And I want to avoid any cutting or manipulation of my muscles. So here I am trying out life without boobs. I can always change my mind and get reconstruction later. So far, so good. I imagined myself waking up from surgery and not wanting to look at my chest. Or else, taking a look and bursting into tears. Neither one happened. First chance I got, I went into the bathroom, stripped down and opened up the velcro bra they had put on me. There was a bunch of gauze underneath that happened to fall out into the sink so I threw it away and threw the bra away while I was at it. I don't look so bad. I have a long steriostrip (tape) going across the length of my chest covering my incisions. A little bit of bruising and some pen markings left over from surgery. They never do clean you up very good afterwards which always bothers me. You'd think they could wipe off all the gunky tape residue and yellow stuff off of you since it's a little hard for us to get at. So what's it look like? I will post pictures eventually when I feel motivated enough to get out the camera and download them to the computer. I am used to seeing a flat chested woman since one of my residents is flat so maybe that is why it looks ok to me. I look thinner, and fit. Not that my boobs were huge but they added curves to my body. Now it is flat and you can really see where the sternum is. The tape is  nice because it hides the scars and distracts you from the fact that there are no nipples. I think it will be more of a shock when the tape comes off and all is revealed but I'll worry about that later. Right now I'm ok and relieved that I am done.