Subscribe to This Blog

And to other Internet pages. There are many ways you can subscribe to updates on Internet pages, I understand, but the only subscription service I've been able to understand is from Blogarithm.

If you subscribe through Blogarithm, that service will send you an email once a day on the days I update my Blog. See the Blogarithm box in the right column? Enter your email address, hit the "Click Here" button, and you will be taken to Blogarithm. If you don't have an account with the service, you will have to set one up. If you do have an account, the service will give you a chance to enter this Blog to your list of followed Internet sites.

Given I am not updating this Blog as often as I used to, I hope this makes your life easier.

A Year Ago: Venita Bald and Jim Getting Sick

I came across this today, the only photo of me when I was bald. That's Jim. The photo was taken about 2 weeks before he got so sick with liver failure. Jim and I look back on this photo now and are amazed at how sick he looked.

The Bathroom Chaos

This is the chaos going on in the bathroom right now. The plumber has the floor opened, and has just disabled my french draining system. I will have to have one or more exploratory holes opened elsewhere in the basement to site a sump pump. The Mushroom Factor!!

First 2 guys are the plumbers, Steve and Joe (father and son), the next (in green) is Jim, and the last is George, the contractor.

This is my 2nd video ever. The first was minutes before and featured my feet.

Renovation Chaos

We gave the contractor the go-ahead on the renovation project on Sunday and on Monday--BAM--the bathroom deconstruction unexpectedly began. I was at the Dr. Chemo's office for my 6-month check-up and came home to my foyer rug turned upside down and the banging of hammers. I was immediately sent out for paint. I've made about eight home center runs this week.

It's hard to keep all the project characters straight. We have the contractor and sometimes one or two helpers. We have the patio guy, the shed guy, the plumber and son, the electrician and son, and the floor guy. George, Henry, Andy, Paul, Steve, Steve, Joe, Rich, ???, and Joe. With chemo brain, I can't get them sorted out.

The bathroom and closet (formerly utility room) are stripped to the studs. The entrance door has been reframed to accommodate a 36" door. Jim has chosen the paint colors he wants in the bathroom and bed/family room. The laundry room has new shop lights, most of its new paint, and most of its new ClosetMaid shelving. The plumber will bust up the floor tomorrow. The electrician will start rough wiring tomorrow. The floor guy will put the vinyl down in the laundry on Monday. The shed pad goes down on Tuesday and the shed will be delivered next week.

The rest of the outside work is waiting on the new patio door to arrive, which takes 6-8 weeks. The windows come in at the same time. So we have another wave of chaos to look forward to in several weeks.

Stefani's diabetic kitty foster is here for two weeks, closed up most of the time in the "separation room." Her name is SweetPea. She is OK, though a little standoffish, with people. She apparently hates other animals. During an introduction to Ennis, SP charged him, and luckily I got into the middle. Stefani called SP off, but I did get a little damage to my hands from SP's razor sharp nails. I have never seen such a healthy appetite on a cat, outside of a feral colony or cat room at a shelter. She has the cutest little phrweet instead of a meow. She's been scratching paint off the door jam of her room.

I saw Dr. Chemo on Monday. He apologized that his staff refused to become involved in my social security claim. Said he'd be glad to summarize my peripheral neuropathy condition in writing for my lawyer or Social Security. I'm not sure whether that is worth it because that is such a minor part of my condition.

Dr. Chemo also took me off Tamoxifin for a 6-week trial period. Some of my complaints are possibly Tamoxifin side-effects, such as insomnia, hot flashes, and short-term memory loss. If I feel significantly better off the Tamoxifin, we will do hormone testing to see whether I can be switched to another drug.

This morning I had an abdominal MRI--following the condition of my liver. Results sometime next week. I asked the MRI tech to note for the radiologist that I have had invasive breast cancer, so that he knows (at least from my point of view) that one of the things s/he is looking for is metastatic cancer.

The dentist starts massive restoration work on my teeth tomorrow. My teeth have continued to erode. I am so dreading the word dentures. I have tried most of my life to take very good care of my teeth, and now.....

I really need a break from all of this. The calendar is chock full. Jim suggested that I might want to cut back on some of my counseling because of the time demands of the house project. That wasn't where I was going with my "I'm so busy" comments.

Happy Birthday--55!!

I was 55 yesterday. Last year about this time my brother Les and his wife Donna were here to visit for a week, feed me, and help around the house. Les called yesterday morning first thing with birthday wishes. He and Donna always remember because my birthday is the same day as their younger daughter's.

For my birthday, Jim gave me a lovely card, a lunch out, and a Nintendo DS Lite with the Brain Age game. I am hoping the game will work to put some of my cognitive functions back together. First I have to learn how to turn the darned thing on.

Jim and I were able to have a fairly low key day compared to how it's been lately. The reason for the recent ruckus around here? Jim has decided to buy into my house. We are starting some renovations on the house to make his living space handicapped friendly and accessible, preparing for the eventuality that that health may yet again pose a challenge for him.

We are turning his half bath into a full bath with a handicapped shower with 2 seats. That is probably the biggest part of the project because the floor is poured concrete that will require jackhammering to break into for the new sewer connections. The utility room off the bathroom will turn into a walk-in closet.

The single roomed dungeon will turned into a suite of sorts when the contractor places a custom built room divider between the "living" and "sleeping" areas. Improved lighting (with the electric panel upgraded to 200 amps), berber carpet, fresh paint throughout. We are going to bust out one double set of windows and the wall below them and replace them with a patio door. To do this, we have to have the exterior graded because the dungeon floor is about 3 inches below the outside grade.

Outside, we will have a paver patio built. It will have a handicapped ramp if needed. The patio will be covered with a roof, and there will be lighting and a ceiling fan installed there. Completing the outside work will be a paver walk around to the rear laundry door and an 8x12 shed to hold from the garage and utility room.

The final part of the project is the laundry room. Paint, shelving, lighting, a linoleum floor, and a portable handicapped ramp for the rear door.

For the contractor, we are using a fellow Jim grew up with. We have seen his work, and it's really good and creative. He's letting me get involved in the design end. My taste for this house runs to the Prairie/Mission style, and I am designing the layout of the wall divider, which will be a shelving/storage/drawer unit with a central feature of an aquarium. We have to start shopping the aquarium today so that the size of that item is all set.

This project (except for the patio door) hopefully will be finished in about a month/6 weeks.

Jim will have everything he needs down there except food. He will not HAVE to come up the steps to leave the house.

Separate from this project but affecting it is replacement of all windows in the house, except the fairly new Andersons in the Florida room. The old windows are original to this 55 YO house, with some really lousy storms. We will be getting vinyl replacement windows, the type with the tilt in sash. I have done alot of research on U factor, the rating element that indicates the amount of heat/cooling loss through the window. We are choosing a relatively high U factor window (although still within EnergyStar criteria) because it appeared to me that a lower/better U factor was not a value for the up-front cost.

We may also have a little exterior siding work done by the window company, which is a smaller family-owned business (thus leading to lower overhead and thus lower costs).

The window project, which includes the patio door, will begin in about 8 weeks and take about a week.

I had my interview with the SSDI-contracted psychologist this week. I went in pretty anxious, wanting to not do too well, but not really knowing where the cutoff might be between seeming impaired and seeming deceptive. After awhile, I just cut out that nonsense and tried my best. The psychologist said he was contracted to test whether I was capable of handling my own funds or whether I would need a trustee. That seems like bullshit. He was clearly giving me a cognitive function test. I felt pretty depressed when I left, but that was going to be the outcome regardless of what or how I did. It's all a matter of uncertainty.

I am getting closer to making an appointment to find a new plastic surgeon. My chest is getting increasingly uncomfortable from the scarring and the implant. I wonder if anyone can make me feel normal in that area again. There is numbness in places, tenderness in places, and tightness everywhere, including from the cording in my armpits. Right now I am eyeing Dr. Bernard Chang in Baltimore (he has a national reputation, having once been the head of plastic and reconstructive surgery at Johns Hopkins) and Dr. Topham at Fox Chase Cancer Center. I will then choose an oncologist at whatever facility I choose for the surgeon.

This week my psychiatrist raised my Lexapro (antidepressant) dosage to 20mg, the maximum. (I am also on Cymbalta.) I am just not sure how much biochemicals help with situational depression. Ann the talk therapist thinks we will be able to cut back to once every two weeks in September.

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.

"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.

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.

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.

I've been Skyped!!

Skype is a pretty nifty internet product. You can use it to have free text and voice chats with other registered Skype users--for free. I joined yesterday and talked with Steve in London. You need a microphone and speakers (better yet, a headset) connected to your computer to hear and speak. I got a pretty nice headset from Dell for <$20, including shipping.

You also can make calls to phone lines through your computer and allow phone lines to call you through your computer. That is not a free service, but if you want that, you might be able to find a "plan" for you at a reasonable rate.

Ever had to make a phone call and your teenager on the land line and you cell phone battery is low? You can use your computer and Skype.

You can contact me if you are a Skype member using the button in the links section to the right. (I have not signed up to receive incoming phone calls using Skype.)

Summer Solstice

Summer solstice used to be one of my least favorite days. It meant that all planting of spring/summer plants was over because they would not have time to bloom/bear fruit before the days became too short to provide adequate sunlight. Also, the days would start getting shorter, giving me less time in the gardens, and the shadow of the house would start moving back over the vegetable garden.

I didn't feel like that today. I am starting to feel like I am just waking up from winter. I am trying so hard to get out of this depression and I keep hoping I get there before all of summer is gone. I only have July and August left, though, and that may not be enough time. That kind of kicks me back into hating summer solstice.

I have had two PT appts this week and have another tomorrow. Only 2 more weeks before I "graduate," unless these laser treatments start doing something for my neuropathy. I can work on balance and strength exercises myself.

I saw Dr. Cutter the breast surgeon for my 6 month follow-up today. Nothing remarkable. I go back in a year.

I also saw my psychotherapist. We get along pretty well. Neither of us want to waste any time getting me "recovered." She does cognitive behavioral therapy, which is the style I'm used to. We started in on my anger at my cancer team, particularly Dr. Half-Boob, for the shape they left me in. After hearing the details of the story, she didn't think my white-hot anger was at all irrational, till I got to the part of where I am angry at myself for not asking the right questions. She even suggested that I consider a malpractice suit, but I am not a litigious person.

My homework assignment is to type out a conversation between myself and my anger. She said I might be surprised at what I learn about my anger. She said I could share it with her if I wanted to, which I think I will. I have started it.

I lost my calendar today, and did not freak out too much. I put a message into the place I hoped I might have left it, and proceeded to call our health care professionals to get appointment dates to rebuild the calendar. Finally I tried the place again, and they had it!! I got all of next week's appointments from the woman, and asked her to drop it into the mail to me.

I plan to curve Ennis this weekend. I have never curved him on Levemir. I doubt it will be a 24-hour curve, but we will see. Maybe a mini-curve for the overnight cycle.

I have taken all of my pills, on time, for four days now. I want to thank Jess for that. She got me a pill holder that has slots for 7 days of pills with slots for 4 pill "times" each day. Pretty nifty, but even more nifty is the timer that cames with it. I can set it to sound an alarm 6 times during the day. I shoot Ennis on the 8s, and now I take the bulk of my meds on the 8s, so two alarm times are serving double duty.

Have a nice weekend all.

Just Another Trash Day

Wednesdays are trash day.

The best news I have is that the chronic diarrhea seems to be over. I took myself off the Levbid that the GP had prescribed and that wasn't doing anything but giving me dry mouth. I tried Metamusil, as suggested by Jim. Even though it is labeled as a laxative, Jim said it works both ways in his experience. I drank a glass everyday I had diarrhea, and within 4 days the constant diarrhea had stopped. Now another week later, I have solid stool. Who would have thought? I have been fighting this problem since last fall.

I have finished and submitted the questionnaire for the SSDI lawyer. It was a downer for me trying to remember all the bad things that have happened and all the negative symptoms and conditions I have been through. And then to paint them in the worse possible light so that my claim would come off positive. I am working so hard now to get better, that kind of felt like a setback. But I need this SSDI. My savings (except retirement) are fast disappearing.

I don't think I've mentioned it but I re-found an old friend, Elaina. She was my department director and direct supervisor when I did collection acquisitions for a public library after I graduated college with an at-the-time worthless journalism degree. She was always so very encouraging and supportive of me, and we really connected on a personal level. She hosted the wedding shower for my first marriage.

I don't know why or how we lost touch, and we both guessed it had been maybe eight years, but we stepped right back into it like it was yesterday. And true to her form, Elaina now has five Newfoundlands. I find that amazing. She asked me to visit (many states away). Perhaps I should, and take Ennis along to see what he thinks of 5 Mastiffs.

But, anyway, Elaina and I have spoken maybe 4 times since reconnecting. We have many feelings in common about our lives right now. Thank you Lanie for the chats and the caring.

Jim and I have started taking short walks in the neighborhood, just once around the circle in the morning before it gets to hot. He walks slow as a snail. I mentioned that to my GYN yesterday, and he said not to think of the walks as an exercise, so much as some shared time with my husband and a chance to observe nature around me. My GYN is such a sweetie. I will do that today, if we walk, and I am sure I will enjoy the walk so much more.

I see my PT twice this week and the breast surgeon tomorrow. I am starting to think about having this mess on my chest cleaned up. All the scars on the right trouble me because, without daily stretching exercises, the scars really righten up and restrict range of motion. I would like to find a reconstructive surgeon who could cut all the scars away and use the excess skin from the left side (after removing the implant) as graft for the right side.

I would have to stop smoking again (yes, for you who didn't know, I started up again when Jim was so sick) so that my vascular system is at top performance for skin grafting surgery. But I do need to stop smoking again. I did make it 7 months.

The psychiatrist put me on a nighttime antidepressant/sedative (Trazodone) to help my sleeping. I was dizzy the first dose, but OK since then, and I have been sleeping better. Sleeping better = feeling better = eating better = getting better.

There was something else I wanted to say, but I have forgotten it. I'm sure as soon as I publish, it will come to me.

We're Still Here!!

I've been busy trying to fill out this damned form for the SSDI lawyer. Why doesn't she just ask the same questions in the same way Social Security did?

Jim finally got his DRs to put him on a small dosage of prednisone for his osteo arthritis. Other than achey knees, he has no other medical complaints. He can't take non-steroidal anti-inflamatory drugs (NSAIDs) because of his liver condition. He's thinking about asking his GI DR for a CT scan of his liver so he can know whether there has been any regeneration. We feel like there has been, given his vastly improved (some might say seemingly normal) condition, even though lots of folks told us his liver was too far gone to regenerate.

I had neuropathy PT 3x this week, and I am doing somewhat better with my balance. "Deadness" in feet and fingers seems about the same. I also met with the psychiatrist, who wants to change my antidepressants--again--but I told him he has to talk with Dr. Chemo for an OK.

I met with the psychotherapist for the first time. She's maybe my age, maybe a little younger, and we are both straight shooters so we got along pretty well. I spilled my guts. Having been through therapy I know how to do that and how important it is to cooperate with the therapist and not fight her. She was fascinated with my story; she seemed amazed I was still alive and sane. She asked me my goals of counseling. I hadn't thought about that before, so I shot from the hip. Probably my "first thoughts" are the best.

1. To resolve my intense anger with the plastic surgeon who brutally maimed me. On reflection, the breast surgeon and radiation oncologist are part of that as well.

2. To resolve my feelings about living with Jim. I don't want anything to up-end our marriage because I love him dearly and need him greatly.

3. To resolve my guilt about having lost my career. Guilt might not be the best word for what I am feeling, but there are certainly strong feelings there. I have always been proud of my career and how I excelled with it. I achieved not only financial stability but also significant recognition of my abilities. That's all gone right now, and I want to get it back.

We want to wish a happy 51st birthday to Robin. I love you Robin, and how much you help me.

Jim's Little Adventure

Jim had his first colonoscopy/upper endoscopy yesterday morning. He dislikes DRs and procedures, so he was nervous, but he is better with them (after 3 months of hospitalization) than he used to be.

Only one polyp that will be sent for histology. A small internal hemorrhoid and an area of abnormal mucosa. The DR told Jim that it was a pretty "clean" colonoscopy. Also no varices on the upper end, which is good news because they are common in people with liver disease.

I continue to be amazed at my miracle man!!

Now if we could do something with the osteoarthritis in his knees.

Because Jim had eaten little in the 2 days leading up to the procedure, he was pleased when I made him lunch and dinner (chicken piccata, yum). I even ate some chicken.

I'm home!!

My trip to see my brother was pretty uneventful. Flights on time, no problems with my meds. I was put to work on the reconstruction, but they didn't task me too hard!!

Jim did great on his own and was very successful in caring for the cats and giving Ennis his insulin shots. Of course, Ennis woke Jim up 2x/night for food. Jim went along with it. Ennis spent alot of time with Jim on the couch, but now he's relocated to my desk. Jim didn't tolerate Lily banging on the crack room door, and he got her so that he would put her in there in the morning and let her out in the afternoon without a peep from her. Of course now that I'm home, she's back to banging.

It reminds me of the Helen Keller story where Ann Sullivan finally learned to control Helen, but then Helen went back to her wild ways when reunited with her parents.

I have nothing planned this week. Jim has a colonoscopy and upper endoscopy on Thursday, and starts to adjust his diet today to eliminate fiber/roughage. Tomorrow clear liquids and the stuff he needs to drink to clean him out. This will be so pleasant!!

Nothing happening in the breast cancer arena until June 21--a meeting with the breast surgeon.

Take care all!

I've Been MIA and That will Continue

The rest of the week's appointment went pretty much without incident, whatever they were. I have no short-term memory and I can't find my calendar right now.

I have decided I need some time away so I cleared a few minor things in my calendar and on Thursday May 31 am heading down to see my brother for a few days. He's completely rebuilding his living/dining/kitchen area, and a little physical labor will do me good. I don't have an actual return date yet, but I am hoping for Monday. And his wife Donna will certainly feed me well. It's always good to be in the arms of family that you love.

Jim's going to have to survive on his own, although we did some pre-cooking yesterday. He's chronologically challenged when it comes to computers, so he won't be able to give updates.

My larger concern is Ennis, who needs insulin twice a day. But I am trying to get him reasonably regulated in a highish range on once a day dosing so Jim can just use prefilled syringes. Better too high than too low. And I see no way to teach Jim to test Ennis's blood glucose level and the make decisions about dosing.

I sure hope the airlines won't give me grief about all the meds I have to pack along.

A better day than most, almost

Jim and I both had a GI DR appt this morning. Jim drove, which was great, because it relieved alot of physical and concentration problems for me.

The GI DR thought Jim was doing great. He took Jim off the lactulose, the ammonia binding laxative that was helping to keep his mind clear. Jim's major complaint was the osteoarthritic pain in his knees. The DR agreed to let Jim's GP prescribe Celebrex, a nonsteroidal anti-inflamatory drug (NSAID). GI DR said 2 to 3 weeks on that, and if that didn't relieve the pain, then a move to a steroid drug, probably low dose prednisone.

GI DR agreed that topical ointments, and Jim has tried 5, do not work, and neither does glucosamine.

GI DR also scheduled Jim for a colonooscopy and upper endoscopy in a couple of weeks. Said he is healthy enough for it, and he wants the UE to check for bleeding in the stomach. After that, Jim goes back in 6 months. We continue to forget to ask for Jims Hep A and B vaccines, and even though I make the appts to include them, that never seems to be on the DR's to do list.

My turn. The GI DR said my last liver CT scan showed another spot and some fatty deposits. He asked why I was continuing to come to him if I would not eliminate my alcohol consumption. I didn't know what to say. It was like he was firing me. He did set me up for a liver MRI in 3 months, but I likely won't go if I haven't gotten my self-destructive behavior under control. I don't want to waste his time, which is what he basically was saying. I know that fatty liver also comes from not eating, which he failed to validate.

He also said he would not give me a colonoscopy or upper endoscopy, which my GP had wanted to check out my chronic diarrhea. He said he would not perform the procedures on someone actively drinking, and that in his opinion, the diarrhea is solely caused by alcohol. Hello? Stress, depression, not eating? I am starting to not like this DR, and even though he was the one who held onto hope for Jim when he was so sick, I'm not sure I want to go back for myself. He suggested maybe I could work with my upcoming psychiatrist and psychoanalyst on my alcohol abuse. (Hello? There's also anorexia and depression; I have a whole list for those folks.) But I can't blame him for feeling frustrated that I am not taking care of myself. There are lots of people frustrated with me.

Including my new PT. She is such a bubbly personality, and I have never seen a therapy clinic with as much personality as this. I think they need a shop cat. Lisa also was suggesting today that she was ready to fire me. She said that if I won't eat, she can't help me with strength training, which she thinks is vital to my balance and hand movements. She said I should get yogurt, cottage cheese, protein drinks and bring them to put in her fridge so that I could have them before or during PT sessions.

After PT, I went to the grocery and got not only what Jim had put on his list, but also some "snacks" for me. I am sure she will be so proud of me. I don't care being fired by a DR, but I don't want Lisa to fire me. She is sincerely trying very hard to help.

Oh, and asshole Dr. Chemo's office. I called today for a refill for magic mouthwash because I have mouth ulcers and everything tastes like cardboard--again. While I was gone, Kernie the gatekeeper, called back and told Jim I had to call back because my message from LAST WEEK was not clear. I hate that woman. She is the one who would not let me talk to Dr. Chemo about needing to see a neurologist to support my SSDI claim.

I am looking forward to the psychiatrist tomorrow. I hope. And to later meeting with his psychotherpist. I need help. And I keep trying. But sometimes it seems like I get shut down more than I get helped.

I do hate to complain about my med professionals, and I do hate to be in the place I am, but that's where I am. I hope for a breakthrough soon. This is NOT who I am.

Raised toilet seat

Forgot to tell you I got one for my bathroom last week.

What a joy at night with the stumbling. Now I need to get a grab bar inside my shower. Need to put another call into handy neighbor Curt.

Another fun filled week

Haven't showered or been out of the house for 3 days.

But the fun starts this morning.

Tuesday: intake with neurologist, PT, grocery shopping. Jim stays home to let the cable guy in.
Wednesday: GI guy for both Jim and me, PT
Thurday: car appt (oil change and ABS isn't working), intake with psychiatrist
Friday: PT

I have been jamming so many appts in. Set up one for my initial bone density test, set up 2 in a few weeks for a new psychotherapist/eating disorder specialist. Have to call my opthamologist for my 2-year check up (and I need it).

I am exhausted!!

Here's that misssing post. I wrote it May 16, 2007. It was in my draft box, so it may be a little sloppy.

This has been and will continue to be the week from Hell. Next week promises to be the same all over again.

Yesterday, I took Ennis to the vet for his little poisoning event last Friday. Blood was "clean," so no permanent damage done. Follow-up in 3 months. That little poisoning event costs me $200 I didn't really have to spend.

Today, the new PT for the 3rd time. Did the anodyne (laser light treatment) on both feet and hands, hand massage, finger exercises, used a vibrator on fingers and feet, stand-in-place balance exercises, and 6 minutes on the bicycle. And while I was waiting for her I did some of my arm range of motion exercises.

Know how you legs get wobbly after a long slow run. Well, I ceratinly didn't need more wobbly.

Then off to the thoracic surgeon, but not right away. There was a 2-hour break between appts. Heading over to a shopping center, picked up some cat food, checked out the food choices (got a bowl of soup and bread), and then visited a kitchen store. Bought some of those forms you can use to make perfectly round eggs.

Still got to the cancer center an hour before my appt. Got my CT scan in the X-Ray dept, but couldn't fill out the paperwork. They filled it out for me and I only had to sign it. More paperwork for the surgeon. I hadn't brought an updated list of meds. My brain and fingers did not want to coorperate, so I only put in the minimum.

Surgeon said the CT scan looked good. Only a very small shadow where the "unknown item" had been last summer. But he agreed to sign me up for another CT scan in 6 months. I think it might just be this DR. He is so very easy on the eyes, and has such a positive attitude.

Tomorrow, another long haul to a prosthetic store. Friday, only PT again.

Next week, GI DR for Jim and me, intake with a neurologist, and PT 3x.