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 gown

2          2)      depends underwear

3          3)      a plastic water bottle

4          4)      an air mask

5          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.

Updates and trying to accept disfigurement… (Picture in this post)

This week I saw my original surgeon, Dr. Schwabb. Unfortunately, he informed me he is moving to Madison. So that really sucks. Out of all the doctor’s I’ve had to deal with it, he’s been my favorite by far. Definitely seemed to be the most concerned about what has been going on. 

They did my mammogram on the right breast, which came back normal.

He recommended that I speak with the plastic surgeon, Dr. Bushnick about going through hyperbaric chamber treatment.  My Primary, Dr. Bellucci-Jackson had wanted me to do it back in December, but said I needed permission from my infection disease doctor, Dr. Hafiz (he said yes) and Bushnick (who said no). Schwabb explained that the shrinkage and twisting is due to a lack of oxygen getting to the tissue and fat cells due to poor circulation in the breast. Partially due to the infection, partially due to the radiation and partially due to they have no clue why.

Yesterday, I saw my radiation oncologist who basically said the exact same thing regarding the hyperbaric chamber treatments. He believes that all of this is also due in part to the auto immune issue he investigated earlier. Though he did all kinds of testing, and came up with all of the signs of an auto immune disease, he could not discover it being any known auto immune disease.

Not only did he recommend the chamber, he also believes that I will have to have a mastectomy at some point. However, doing a mastectomy right now, there is no guarantee that I won’t have the same healing issues and infection problems that I have been dealing with since September’s surgery. He is looking into University of Chicago and Northwestern to see if he can find someone who can try to figure out this tissue issue. 

While everyone wants to blame the radiation, he points out that there were problems before the radiation even began, including the cancer and the first infection. He admits that the radiation didn’t help the situation and that I appear to be highly sensitive to radiation – probably due to the unknown auto immune issue.  Without more information, they basically would want to wait about 2 years before doing any surgery to try to fix the breast and then there still wouldn’t be any guarantee that another infection wouldn’t occur.

So until it can either be fixed or removed there is the disfigurement to deal with. It hurts, and it hurts bad. Most of the time my left arm cannot be lifted over my head. It’s now locking up both my shoulder and my neck besides. The hyperbaric chamber should help with that and will need to be followed up with massive physical therapy. 

Other than the physical pain, there are the emotional side effects. My left breast is now about half the size of the right one and much higher and tighter, making me the most lopsided I have been since this whole ordeal began. Only one hole has closed so far, though two of the others are getting much closer. Not only is dealing with all of this exhausting, I don’t sleep very well anymore, and looking into the mirror usually ends with at least some crying. Not only are there still holes, it’s twisted and indented, and parts of it are still hard as a rock. 

It’s hard for people to picture, much less understand, what exactly it’s doing, so here’s the latest picture (graphic editing provided by my son). Parts of it look better than it did, but the shrinking and twisting just continue to get worse, and I'm told that without the hyperbaric treatment, it can get worse than this.

 It does get downright depressing trying to deal with this, not only because it won’t go away, but because so far, nobody has been able to say 100% what the hell the issue is. It’s hard to deal with something when you don’t even know exactly what it is you are dealing with. 

On Monday, I start my Cancer Transitions support group, so hoping that will help with learning to cope with some of this. This crap has been going on for a year now. I need my life back. I need to get back to work and my parents need me to get back to being able to help them out. I didn’t plan on having to add in 2 months of 5 hour days to sit in a tube and probably freak out since I’m claustrophobic anyway. 

So that's where things are at right now. Next Thursday I find out if I am done with the antibiotics or not and hopefully I will get off the PICC line, though there is no guarantee that is going to happen. On Friday I meet with Bushnick and see what he has to say about everything including the hyperbaric treatment. More updates will come then.

Btw....the 25 pounds I lost while on the antibiotics that killed my appetite? Yeah, unfortunately that all came back.