Kerri Connor's Blog, page 3

Updates, Mom and Mardi Gras

The past week hasn’t been much fun.  I obviously decided against the hyperbaric chamber. Just no way in hell I’m getting in there.  On the 28th, I saw Dr. Hafiz. He had planned on ending the antibiotics and pulling the PICC line that day, but instead he extended my treatment until February 16th. I see him again on February 10th – my birthday. Not the best birthday obviously, and definitely not near as good last year when I was in NOLA.
On the 29th, I had to go over to the hospital to have my PICC line flushed as I wasn’t getting any blood return from it. When I got there, the nurse saw how far out the line was and ordered xrays to make sure it was still in the correct location. We had to wait for the PICC nurse to come in and ok the treatment. The original nurse thought I was going to have to have a new line put in, but thankfully I didn’t. However, because I was there for 3 hours, and still had to go home and do my 3 hour antibiotic, I had to cancel my appointment with Dr. Bushnick.
That night mom also ended up in the emergency room because her primary doctor wanted her hospitalized.  We were surprised the next morning to hear they had let her out in the middle of the night. My brother brought her home. 
I went over to see her Saturday afternoon because her nurse and caregivers thought she should go back to the hospital. I spoke with her, and honestly, dad and I were both scared we were going to lose her at any minute. She was so weak, her blood pressure sky high. I had the caregiver call the ambulance and when dad’s evening caregiver arrived, Mike and I headed to the hospital as well. They did end up keeping her this time and it was a good thing. We found out on Sunday she has a large blood clot in her heart. They are able to keep her blood pressure down now, but there are a few other issues going on and she is definitely still not out of the woods. She seemed to be doing better, but I called her early this evening and she was confused and very hard to understand.
On Monday I saw my nurse and when I asked her if she knew anything about how much longer I would have to be on the blood thinners, she said they treat for a year….that wasn’t what I was told in the hospital at all – they told me 3 months so I really hope she is wrong as I’m coming up on the 3 months and can’t imagine having to go in to the docs office every week for the next 9 months.  I had planned on seeing my acupuncturist today and tomorrow for electromagnetic therapy, but due to the issues with mom, I cancelled all non-essential appointments. Thursday I do see Dr. Bushnick again and have a few things to talk with him about including seeing if he can refer me for a prosthesis so I can at least try to look semi normal.
Saturday is our annual Mardi Gras party, doing another murder mystery this year and we have quite a few people coming out for it. Really looking forward to it. I had hoped I would be off the antibiotics and have the PICC line out, but no such luck. With everything that has been going on, I am highly looking forward to spending a fun evening with family and friends.

To Hyperbaric or not?

I had my appointment yesterday at the Wound and Hyberbaric Center. Things started off with literally an hour of questions (after I filled out the paperwork) while they entered info into the computer. This was followed by a cleaning of the wound, some lidocaine and eventual a gauze pad made of silver. They put in an order to have those gauze pads shipped to me as they are supposed to be changed every 2 days. 
This morning the company they ordered from called and said that the insurance denied it since they are out of network. I called back the Center, they had me call the insurance company. The woman with broken English sent me a list of suppliers that are in network – for home medical supplies not for wound care supplies. I don’t need a wheelchair. The Center is now trying to work with the insurance to find a provider that is in network and actually has what I need.
Back to the capsule of hell. 
After getting me all set, even more paperwork, and the scheduling of 3 tests I have to do next week – chest xray, EEG, and PFT (tests lung function) they walked me over to the room where the capsules are. I watched a brief video where people said the enjoyed their treatments and found them relaxing. Then the technician started going over all of the do’s and don’ts with me and frankly he freaked me out even more. I had posted a picture on Facebook, that I realized wasn’t quite accurate. That one shows the bed to be much lower, like lying in the bottom of the chamber. That isn’t how it is. This picture is a better representation. The bed is up high enough that I needed the step stool to get into it. I asked how close my face was to the top because I thought maybe I was just seeing it as being too close. No such luck, face is only 6 inches away from the cover.





Due to the possibilities of fires, which could then lead to an explosion there are only 5 things that you weren’t born with that are allowed into the chamber. 1          1)      your cotton gown2          2)      depends underwear3          3)      a plastic water bottle4          4)      an air mask5          5)      a band on your wrist that stops static 
Absolutely nothing else. No make up, NO hair products – this includes conditioner and there are only 2 approved shampoos: Johnson’s Baby Shampoo and Head and Shoulders. No conditioner is allowed. (which means my hair would need to be cut because trying to get anything through it without a conditioner is damn difficult as it is. Two months of that?  It would be far easier to cut it short.  There are only 2 approved soaps: Ivory or Dial Gold. 
My nose ring which I have tried removing several dozen times over the past few years just so I could change it out, would have to be cut off.
Due to my claustrophobia they would want me on Xanax, which they then won’t allow me to drive. Which honestly is silly because they aren’t going to give me a high enough does to either effect my driving nor make me comfortable into the tube. Because they won’t let me drive, they want me to take the van back and forth which then instead of it being a 4 – 5 hour day it would be more like an 8 hour day. 
All of these above things are going to be problems when I go back to work in a month. 
The claustrophobia is a HUGE issue for me. We tried a “dry run” yesterday.  Within 5 seconds I was begging him to pull me out. I tried going back in again with my eyes closed. it was a little better, but not good enough, especially if I opened my eyes in there. I’m also told it can get warm in there. Just the thought makes me feel like being cooked alive.
I came home last night and took 2 Xanax. When Mike came home and talked to me about it 2 hours later, I still got pretty upset and that’s just talking about it.
So besides all of the above, there are also side effects of course. These range from muscle twitching, to seizures, to a dropped lung to accidental explosion due to the oxygen levels. 
The beneficial side, there is an 80% chance I will improve at least somewhat. Not that I will improve 80%, but improve at all. There is a 20% chance it won’t do any good at all. 
There is also the time factor. While doing all of this, I’m also supposed to have time for physical therapy, work, and I need to start helping out with my parents again as they are both in worsening conditions and the in home care will soon have them through their savings. I need to step back up and start doing my fair share again. 
So Thursday I see my infectious disease doc and find out if I can quit with the antibiotics and remove the PICC line. I’m also seeing my acupuncturist so I can see if we can work something out there as well. Friday I see my plastic surgeon and I’ll be asking about a prosthesis and about the physical therapy. 
If nothing else works I can always go back and try the chamber again. I just don't think all of this is worth it when it's still going to have to come off in about 2 years.
Oh and last night? Yeah, woke up from a nightmare that I was trapped inside and trying to claw my way out….Not a good sign if you ask me.

Finding support in a support group and what not to say to cancer survivors

Yesterday I started my Cancer Transitions group. I must say it was far more emotional than I had expected it to be, but hearing so many other women say the same things I have been thinking and feeling for the past year really got to me. 
In 20 minutes I’m heading out to Huntley for my evaluation for the hyperbaric chamber (more on that later) but I want to hurry up and get this entry done first. 
One of the rules of the group is “no cheerleading” and no offering unsolicited advice and wow that was a real welcome statement. We were given a ton of reading material and I want to share parts of an article written by a man who is a prostate cancer survivor. His name is Craig T. Pynn and the article is titled Jumpers, Minimizers: Dealing with Responses I Wish I Hadn’t Heard.
Basically, this is what you don’t say to a cancer patient (or anyone with a serious condition) and why.According to Pynn:
                                Jumpers A Jumper’s favorite expression is “Don’t worry. Everything will                                turn out fine.” Variations include, “Every cloud has a silver lining” and “God                                gives you only what you can handle.  I know you’ll be able to handle this.”                                While responses like these were meant to be encouraging, in the end they                                 felt like clichés that moved immediately to a happy ending – and jumped                                right over my need to process, and eventually to accept, the fact that aggressive                                cancer had become a reality in my life.
                                 By focusing only on the happy ending, the jumpers inadvertently excluded the                                 intermediate struggles that lay between now and then. Eventually, I decided                                that the jumpers, by automatically presuming an optimistic outcome, did                                so because they were simply emotionally unable to entertain bad endings.
                                Minimizers Rather than encourage me, the minimizers only tended to deepen                                 my gloom when they made comments like, “Oh my husband had prostate                                 cancer, they took it out and he’s fine now.” Or “Prostate cancer has a high                                cure rate, you know.” Yes, I already knew. Despite their undeniable good                                intentions, the minimizers focus on what had happened to other people                                conspired to diminish my own experience, possibly even implying that I                                 was just a whiner at heart.
                                Fixers Fixer statements I heard included “You should have the proton beam                                 treatment”, “Make sure you have robotic surgery” and “I know a great urologist”.                                All of these solutions were offered before I even knew what my treatment                                options would be.
I found this article to be very right on track with my own feelings. We all want to make people feel better when they are going through something like this, but often don’t know how. The best you can do for someone is ask HOW you can help, because honestly, often the words you say, do more harm than good.