Sunday, July 29, 2007

First Anniversary

Friday was the first anniversary of my last chemo infusion. Whoo Hoo!! Makes me want to start feeling alot better.

Friday (before we realized it was an anniversary and something to celebrate) Jim and I went to a mastectomy store and I got a prosthesis for the right side. It's basically a silicone "falsie" that goes into a pocket in a "mastectomy bra." The saleswoman did a really great job "matching" me up (given the left side implant is about an inch too far to the left) and in finding a bra style that is comfortable for me. Thankfully, I didn't need a "filler" prosthesis for the left side.

I wore the prosthesis out of the store, and surprisingly felt "complete." The falsie is as "dead feeling" as the implant, so I not only look symmetrical, I feel symmetrical.

This was a big emotional step for me. I had been putting it off for some time.

Luckily, insurance covers needed prostheses once every two years and four undergarments a year.

Jim and I went to a club picnic yesterday. I felt comfortable showing off my falsie in a tank top. I haven't worn a tank top since before this all started.

Wednesday, July 25, 2007

"New Normal"

Thank you Laura (among others) for giving me guidance on this journey. Last week Laura said "I truly hope you and the therapist can help you to become the person you really are. I won't say 'your old self' because you aren't ever going to be that person again. None of us are the people we were yesterday, even, but more so for you after so many life-changing events."

I had read, many times, that there turns out to be a "new normal" for most cancer survivors. I thought I would be an exception. I have been fighting so hard to get back to where I was.

I now understand that is an impossible goal. I have been so changed physically and emotionally that I will never get back to the old me. This is a major breakthrough in thinking for me.

Last night, in my cancer group, I asked the others about their "new normal." From what I heard, it seems that finding a new normal might follow the stages of grieving: denial, anger, bargaining, depression, acceptance. One woman with metastatic cancer with an unidentified primary source is SO ANGRY that she has been denied her dreams of and hopes for retirement. Others seemed further along the path; one in depression (just trying to figure out how to juggle the demands of her old/current life with a new normal), others in acceptance.

All the women in the group spoke of having reduced energy, motivation, concentration, memory, and physical strength. The further along they are in the process, the more it seems they have adapted these new limitations into their lives. Those who seem to be in the acceptance phase seem to have much more joy in living than do those of us that are newer to the experience (or newer to analyzing the experience).

In the last two weeks, I have seen glimpses of my having a renewed interest in the future. I have actually thought of going to get that prosthesis. I have considered making an appointment with a plastic surgeon at Fox Chase Cancer Center (Dr. Topham). Last night I arranged to accompany one of the women in the group to her next appointment with Dr. Topham so that I could see the Fox Chase campus and get a feeling for Dr. Topham's practice. I don't expect to go in with her for her face-to-face with the Dr., although I would jump at the chance if she asked.

Jim and I also have planned a mini vacation. In early September, we will go to Cape May, NJ, stay in a hotel on the beach for two night, travel there or back on the Cape May-Lewes Ferry if the weather is good for a boat trip. Ennis will go with us so that he can get his insulin.

Laura and I also are planning an FDMB day trip to Ladew Topiary Gardens in September. It will likely be a group of 6-8 crazy cat women spending the day visiting the gardens and house and having a potluck picnic.

Jim is talking about trying to reschedule the Europe trip we canceled in 2005. This is the trip where we would travel to and from Europe by cruise ship and spend 3-4 weeks on land, mostly in Italy seeing Rome, Venice, and Florence. After Jim got so sick, I thought we would never take a European trip together. Right now, it's seeming possible again. Jim might have to get supplemental health insurance because Medicare does not cover outside of the country.

Tuesday, July 17, 2007

A 12-day Break; Sorry.

Yoga. Ugh! It's been way too many years. But the facilitator, Kelly, is very kind and understanding about some of those in the group (like me) having physical limitations. I have been there twice now, and I plan to continue. If nothing else, it's a relaxing (even though uncomfortable) hour away from other responsibilities. A little "me" time.

I also went to my first cancer group meeting last Tuesday, and I found it useful. As the new kid on the block, I was asking alot of questions about others. I got alot of info on two of them. I would tell you about it, but there is a confidentiality rule. But suffice to say that one of the attendees is heading into a rough patch with a lung cancer recurrence. I think I will fit in well there; tonight is my second session.

I haven't had Tai Chi yet. I got the time wrong and overlapped it with a psychiatrist appointment. The psych bummed me out for the rest of the day. I told him that I was having trouble sleeping, and he asked questions and came to the conclusion that my insomnia is a manic state, and thus my DX should be manic-depressive--bipolar disorder. I took exception to that DX, maintaining that many of my drugs, my depression, and my menopause should be considered in "sourcing" my insomnia. Also, when I am up at night, I am not particularly "up." That is, I am not experiencing a surge of energy and euphoria, or irritability. The psych suggested that I research the symptoms of biopolar disorder on WebMD. I've been looking at them and I don't think that is me.

I spoke with Ann, my talk therapist, about it the next day. She also disagreed. She said she hasn't seen any manic signs about me.

Yes, I can be a high achiever, but manic? Nope. As Ann advised, and I'm doing, I'm not owning that DX. And Ann found it interesting that the DR. didn't put that DX in my chart.

Ann had given me the week off from any homework, so we just chatted about the bipolar DX and the fact that Jim wouldn't let me have the week off, insisting that I finish the 2006 taxes. They are now getting close to done. That will be another to do off my list.

I got about 8 hours of weeding done this past weekend. So much more to do. Some weeds in my herb bed are more than 4 foot tall. I relax when I'm gardening, even if it's weeding.

This morning was a disaster. I went to the dentist because my teeth have been eroding. He agreed, said that all 12 of my front teeth (incisors and canines, top and bottom) have lost enamel on the back and the edges. (I have never before had any problem with those 12 teeth.) All four premolars/molars on my bottom right have chipped cusps. Dental caries (cavities) is setting in. The dentist believes this is from poor dental hygiene during my dry mouth period. He said I caught the problem early. The dentist saw me in late February, and there was no evidence of this at that time.

I asked the dentist whether he could discount any of this work. I have appointments for 3 hours of dental work and knowing his prices that is in the $1200 range. He was very kind and told me not to worry about it; it is only money. I wasn't sure what he meant, but when I checked out, there was no charge.

The dentist also looked at a small growth on my gum. It's been there about a month. He said it was likely benign, but that I should have an oral surgeon remove it and have it biopsied. Phone calls to insurance. Phone calls to oral surgeons. The closest oral surgeon that participates in my medical plan is at University of Penn in Radnor, PA; about 1.5 hours away. I will have two appts with him. One for a consult and to complete the paperwork for insurance's pre-approval. The second for the surgery.

At the same time I am trying to build myself back up, I am falling apart.

Jim is doing very well. He is mentally sharp as a tack. His blood values are mostly in the normal range; still some minor problems with some liver and kidney values. Still my miracle man. His only complaint is the arthritis in his right knee, and based on good bloodwork, his DR today approved him upping his daily prednisone from 5mg to 10mg.

Thursday, July 05, 2007

July 5, 2007

I had to pull out the calendar to figure out what I've been doing. I have completed the questionnaire for SSDI and reviewing the draft of my will. The 2006 taxes still await my attention (UGH!).

June 25 I saw Ann, my talk therapist. I had, as she asked, scripted three conversations with my anger. I discovered that Anger is male, and protective in a patronizing way.

Anger showed me he had been in a white-hot rage at Dr. Half-Boob. Some of the statements he made about that Dr.:

He let you suffer through 11 months of pain and fear and infection without telling you that you had little chance of making it to the “finish line.” That was unconscionable.

He didn’t give you the news himself; he let some lackey do it for him. That was unforgivable.

He never apologized or showed any empathy. That lacked both morality and character.

He was holding me close to help me through the trauma, but he understood when I told him he was smothering me. He then backed off considerably.

He helped me understand that I was holding onto him because I am anxious, even scared, about the future. First about the cancer and what survival statistics for Stage IIIA breast cancer might mean for me. Second, and far more important, is my anxiety about the “solutions,” if any, to the mess I call my chest. How can I trust another reconstructive surgeon to paint a realistic picture of my possible outcomes? I came to understand that many doctors' "I'm very busy and important and can't spend much time with you" attitudes intimidate me.

I haven't had scripted conversations with my Anger since, but I now know that he is always with me and looking out for me. And he is now calmer in dealing with other health care professionals.

For example, the day after I saw Ann, I saw my neuropathy physical therapist, and for the third time, I asked her to help by filling out the lawyer's questionnaire about my physical condition. She point blank refused, while at the same time saying she would do anything "within her power" to help me. Frustrated and feeling Anger, I became upset. I did not want to get loud (there were other clients in the place), so I told her I had to leave. She held onto my arm to keep me there while repeating what she had said about not being able to fill out the form and wanting to help me. I kept quietly asking her to let me go. She finally did and I left.

I called later that day to cancel all future appointments and explained that I just wasn't getting anything out of the laser light treatments, and it was too much to travel that far. The receptionist kept saying that the therapist would have to see me or talk to me to have information for my "discharge." I kept saying I didn't want to talk to her. Finally, the receptionist "heard" what I was saying and stopped insisting.

This series of events hung heavy on me into the next day and I started dissecting what happened. I came to realize that, even though I was upset, I did act rationally in removing myself from the situation and in quitting therapy. I came to realize that my quitting the future appointments was not directly connected to the SSDI "conversation." It was simply the final straw that helped me see how stressed the 4 hours, 3 times/week, going to, returning from, and spending at therapy was making me.

Jim explained that I likely hurt the therapist's feelings by quitting, and he suggested I call to explain it to her. After a few days I did that. Turns out she was not hurt (or at least she didn't own that she was). Instead, she just repeated and repeated the same "party line" she had given me in the treatment room. Just hearing what she was saying transported me back to the blowup event, and helped me to really understand that she simply was not listening to me.

Even though I am at peace with quitting therapy, the cloud of the event hung over me for more than a week. I had used up so much energy on the therapist that I had little left for anything else. I became a slug all week. When I saw Ann again on July 3, I had to explain why I hadn't continued my scripted conversations with Anger (my homework assignment). Ann validated my feelings and actions and when I asked for my homework assignment for this week, she said she was giving me permission to do NOTHING for a week, but to rest and regain my energy. I like this assignment.

I have decided to go to the Wellness Community for breast cancer group sessions and for exercise (Tai Chi and Yoga). I need to network for another plastic surgeon, and TC and Yoga can, I think, help to replace the neuropathy therapy. My first Yoga class will be this morning.

I have been seeking out a new plastic surgeon. I called Fox Chase Cancer Center in Philadelphia (an NCI comprehensive cancer center), and the chief of reconstructive surgery there, Dr. Neal Topham, is willing to see me. I also have collected names of surgeons in Baltimore, MD; Exton PA; and Voorhees, NJ. The one in NJ has a specialty in wound care as well as plastic surgery. All three interest me, but I believe insurance will only pay for two opinions. My radiation oncologist also is seeking out the name of a plastic surgeon at Johns Hopkins in Baltimore. He likely will come up with Dr. Navin Singh.

Enough for this late morning. Thanks for reading such a long post.