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:)


  1. Whine all you want. :) But don't let it get in your way of being happy. Love you!!!! wt

  2. I think you're nicer about it than I would be. Holy crap, are they lucky you're self aware and willing to do what you need to, instead of being complacent and ending up in a coma, or worse.

  3. Hello Janine,

    My name is Karen Kramer and I do marketing work for FORCE (Facing Our Risk of Cancer Empowered)www.facingourrisk.org. We now have a blogroll on the FORCE website and I wanted to know if you were comfortable with us adding your blog, cut the b*tches off, to our website.

    Let me know your thoughts and if you plan to continue writing about topics of interest to the FORCE and BRCA community.

    If you are comfortable with this, I would need your email address.

    Best regards,
    Karen Kramer

  4. In the journey of your treatment there are good and bad departments...good and bad medications and doctors but you have to fight through it and still go on.