Help for Healing

Bitter & Sweet, living daily with grief


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More Madness

The good news from last week is that Dad was able to legitimately be in the hospital until Saturday and was transferred to Rehab. As always, there are great professionals, average, and not-so-great-at-all. It is still the policies and procedures that make me crazy because it is a set-up for nonsense.

Dad arrived with eight stitches in his head. We had been told they would need to come out in seven to ten days. I figured that wouldn’t be a problem because he is going to be in a medical facility anyway, right?

Right.

He was admitted Saturday and that is when I started asking questions about the stitches. Dad is going to need these out on Monday. Yep. Okay. I find out that “his” doctor (the one assigned) came in early Sunday morning. I asked if there was anything about the stitches. Nope, he didn’t seem to notice them. Please send a note to him because those stitches need to come out. Yep. Okay. Apparently my voiced concerns did not warrant a note in the chart so he wouldn’t overlook them.

I come in Monday and guess what? Doc doesn’t come in on Monday. Tuesdays and Thursdays only this week. Fine. Can you please make sure the note is there for him? Yes, it is.

I come in Tuesday. Doc came in the early morning. Guess what? He didn’t look at the stitches. The nurses are the ones to take the stitches out but they aren’t allowed to without “doctor’s orders.” This actually goes back to the emergency room because the doctor there should have written orders for them to be taken out, but he didn’t do his job either.

Now I’m mad because it’s twice he’s seen Dad and nothing has happened. I said I want the doctor on Wednesday to look at him then. Nope, can’t do that. Why? Because we can’t bill for more than one doctor. But don’t worry, they’ve only been in seven days. Um, no. It’s been 10. Not sure how they count, but I know they are wrong.

The billing thing royally ticks me off. I go in Wednesday and go to the social workers. I tell them that their billing protocol isn’t my problem. They agree. I told them it is shameful if a doctor can’t spend less than one minute to look at the stitches. It is merely a hoop that needs to be jumped through. The nurses know they need to come out, but they can’t do it without orders. The social worker tells me that the doc IS coming in, even though it’s Wednesday. Phew!

I go to the nurse and tell her to PLEASE not let the doc forget to see the stitches. She says that the social worker is wrong. He is NOT seeing patients today. I go back to the social worker and don’t really have to find the words because she can see the look on my face. She says she will take care of it.

A nice nurse eventually comes and says that if the nurse practitioner happens to show up, she will have her look at Dad. If not, the doc will be there in the morning. She reassures me the nurses have been checking every day and the stitches have not become embedded into his skin so it’s ok. She manages to persuade me that it really is ok.

I come in this morning on Thursday and the doc hasn’t been in yet. He still hadn’t been in when I left at noon. I had to leave for work (imagine that, I have an actual job!) so I asked the nurse to PLEASE call me as soon as the damn stitch thing is resolved. She had already told me that she agrees the stitches definitely need to come out.

As I’m writing, I still haven’t gotten a call. My niece is on her way there. I told her to text me what is going on. She won’t be aggressive with them like I am, but if it gets to be 3:00 and they aren’t out, I will have to go back for a second time today and it will be very, very ugly because I will be very, very mad.

It’s all just stupid. There is no other word for it. Continue reading


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Whining

A week and a half ago I hit my elbow. I remember that I did it and yelled out because it was ridiculously painful. I can’t recall where I did it or how, just remember the incident. I was surprised that over the next few days I couldn’t use my arm in certain ways (like pulling the garbage can) without it hurting. Then it got better. Then I attempted yard work. I was using the long-handled cutters to trim bush branches and suddenly, there was seering pain from my elbow to my wrist.

Excellent reason not to do yard work anymore. So I got that going for me, which is nice.

It seemed like a silly thing to call the doctor for, but I bit the bullet. Now my doctor rocks. I love her to pieces. The nurses are also pretty cool for the most part. But the staff in general is a royal pain. I complain quite often and my doctor seems as frustrated with them as I am.

First is to set up my appointment. My usual doc is booked up so I am seeing the other one. I don’t mind that at all. He is pretty cool too. I really wanted though to ask some questions about whether coming in to my primary was the best step. I ask who are the nurses on duty are today.

That did it. The nonsense started. It’s a straight question that requires a simple answer with the names of the nurses. The staff is not confidential, the patients are supposed to be. The receptionist is completely flustered and does everything possible to evade the answer. Bizarre. Then I just ask to speak to the nurse I am quite close to. More craziness and finally a blurted out, “She’s not accepting calls today.” Ridiculous.

“Can you please leave a message for her to call me.”

When I came in later, she tells me she is sorry but that the staff was protecting her because she was slammed. I get it and I listened politely. I just said, “So and so is here today. She is extremely busy so if you don’t get a call right away, please be patient.” Would that have been so hard to say? Instead, he (the receptionist) acted like I had asked an extraordinarily inappropriate question.

What I didn’t say (but wanted to) is that this is MY medical team. I pay for your services. Therefore, I help pay for your salary. Isn’t the medical field supposed to be protective of the patient? Sounded exactly like what I went through at Roswell with the patient advocate. He did not advocate for Tim at all. Clearly, his job was to keep us quiet so the doctors were less stressed. Maddening.

Anyhow, turns out I have tennis elbow. Now if you know me, you will find that to be hilarious because I am utterly and morally opposed to exercise. Tennis elbow is usually a chronic condition over a long period of time due to repetitive movements such as swinging a racquet or golf club. I however, have an acute case. I smashed it, then re-injured it. There is blood in the bursis (where bursitis comes from) so he couldn’t give me a shot because he didn’t want to put a needle in all that blood. Ice 3-4 times a day. Elbow brace 24 hours a day except for showering, for six weeks. And he really, really wants me to baby it, coddle it, hardly move it.

Now if you know me, you will also now be rolling your eyes. By nature, I am already a massive baby. You will never hear me making fun of men who are sick. I am the absolute worst.

It’s my left arm and I’m right-handed.  Didn’t think it would matter much, but it has turned out to be like anything in life that you take for granted. You don’t realize how much you use something until you can’t use it anymore. The biggest culprits are:

Driving a car (because you close the door and get your seatbelt with your left hand)

Flushing the toilet (because the handle is on the left side and it is a power flush and requires force to get it to work)

Unbuttoning my jeans to go to the bathroom (buttoning is no problem for some reason. Unbuttoning makes me squeal.)

Unsnapping my bra. (Ok, smart ass. For those of you that know me well, YES! I have actually been wearing a bra!) Seriously, putting it on is no issue but taking it off is awful.

So I have been whining and complaining and babying myself, and it has all been sanctioned by my doctor. Aren’t you glad you don’t live with me?

 


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Genetic Markers

Last Saturday I was part of a medical conference that was wildly successful. The focus was to start the conversation with doctors, nurses, medical staff, and social workers about starting the conversation with patients/clients regarding end of life planning. The resounding message by speaker after speaker is that our current model is sorely lacking and in particular NY is behind the rest of the country. Right now, the conversation doesn’t occur until you are already in a major crisis or actively dying. This is much, much too late.

Truthfully, the conversation belongs anywhere that people gather. It should start in the home. But the first step is to get medical professionals to be comfortable with the concept. And it is my very strong opinion that the main reason this isn’t already happening is that they aren’t comfortable with dying themselves. How can they help someone else navigate those waters? If docs get it though, they will start to get their patients to talk about it at home. Eventually.

Anyhow, I was part of a six person panel that spoke for about 10 minutes (each) and then fielded questions from the 180-person audience. The conference ended with five skits that showed most of the concepts we were trying to teach. Sometimes the docs in the skits did great, other times they missed the mark. The intent was to generate conversation with the audience and it seemed to do a great job. I was in the skits, but more importantly for me, I wrote them. This was a huge stretch for me professionally. My books and blogs are always about personal things that actually happened. I have never written before by creating scenarios/characters so I was terrified of the outcome. However, it seemed to be go over extremely well. Yay!

On one of the breaks, someone from Roswell (the cancer hospital here in Buffalo) approached me. Bottom line is that apparently they have recently discovered a genetic marker for gallbladder cancer. I was extremely busy preparing for the next section of the conference, but I tried to process the implications of what she was saying. I told her that was incredibly important because the hallmark of gallbladder cancer is there are no symptoms until stage IV when it is already too late to hope to treat it effectively. Of course she knew this. She said she hesitated to approach me, but knew from my lecture that I had kids. Could mean life or death for them.

Could mean life or death for them. That is really the bottom line. I have thought of this repeatedly since the weekend. I didn’t have anything to write the information down at the time, but she told me to google it. I attempted to, but the only articles I could find said there are no genetic markers. I have started looking for the proverbial needle in the haystack in my efforts to find this woman at Roswell. So far no luck but this is worth being my relentless self to find her.

So many, many questions. What if one of Tim’s kids have the marker? What would they do? Remove the gallbladder? Or just run tests every year? Does it ever skip a generation? If the kids don’t have it, should their kids be tested anyway? And would this be important information for Tim’s brothers too? Is there a particular age to utilize this information? I get a physical reaction whenever I start thinking about it. It’s a cross between literal illness from being reminded of the nightmare Tim went through and the utter terror of my kids or grandkids going through it someday, and excitement and anticipation at the possibility of being able to stop it. Thank God I wrote those books and started to lecture or I wouldn’t even know about this information. I think when they have a breakthrough, they should be required to seek out all former patients’ families and make them aware. That’s a pipe dream.

Wish me luck on this latest endeavor. I need to find this person and I need lots more information. And then I need to approach my kids. I talked to Colin and Frankie the minute I got home from the conference. Colin (age 32) just looked at me like I was insane. Frankie (age 14) told me he will never get cancer because he is immortal and will live forever. Later I thought of course this would be frightening for them to even think about, no matter how much they try to be cool on their exteriors.

Yes, wish me luck and say some prayers too!