Monday, February 26, 2007

Max Again

The Saturday visit to the fill-in vet was good. She didn't charge an office visit or half the meds she sent me home with. She also was very gentle with Max. I love this practice because (except when X-Rays are being taken) clients are allowed in the "back room."

Max's blood pressure was normal, and the bloodwork showed that he had internal bleeding, but the vet agreed that was likely from the past bleed, and not an active bleed. Again cautions to do clinical exams at home.

Max isn't himself. He's finding new hiding places, and didn't sleep with me last night (although he took a nap with me yesterday afternoon). He's also doing the meatloaf hunch. He rarely comes up to his bed on the desk, although he is here now, bless his heart.

So now we also are a cat Hospice. Keep Max as comfortable as possible until he tells me it's time to check out. Giving him SubQ fluids daily is really a chore. He hates them and too often I pass the needle through the "tent" and end up "wetting" the bed and Max.

I will be talking to the regular vet today about what we do now, including maybe "de-bulking" the tumor through chemo. I am not interested in surgery for that purpose. I don't think Max would survive it, and I don't want him to pass that way.

The fill-in vet suggested regular BP and blood tests to see whether he is bleeding internally. I will talk with the mobile vet about whether she can help me do that. Depending on how he responds to the massage and acupunture on Tuesday (or maybe later in the week because we have "weather" now), if we return to the Alternative vet on a regular basis, she likely can do the tests he needs.

I'm now getting used to calling him my little cancer cat. He is eating well on the Hills A/D I got for him. Part of that might be the cypro he gets to stimulate his appetite.

I am so sorry, Robin, if you are reading this. Robin recently lost her dear cat Peri to this same sort of thing, although she didn't get much of a Hospice period with him.

People say take lots of pictures. I got a digital camera for my birthday last summer, but I haven't really figured it out. I also hate the delay between pushing the shoot button and it actually capturing the picture. I can't get a face shot, just a profile.

For those who haven't seen a pic of Max, here's a link. This shows why I have always called him my fat faced fellow.

Saturday, February 24, 2007

Maxwell Update--Not Good

Max has a huge shaved area from his ultrasound, and I kept the hair. I plan to find a nice antique jar to put it in.

Ennis tried to hiss at him when they met up, and Ennis got a slap on his butt.

The Radiology Report

Findings: 10.1cm, invasive, pancreatic-origin tumor which encircles portal vein prior to entering liver. Ascites which is hemoabdomen. Splenomegaly with hypoechoic parenchymal stippling.

Diff Diagnosis: Pancreatic carcinoma in non-resectible form. Mass rupture. Hemoabdomen.

Sure contains a lot of words that were meaningless to me. But I have since learned "hemoabdomen" means blood in the abdomen and "non-resectible" means it cannot be surgically removed. "Mass rupture" with the other words of course means the tumor has opened and is bleeding into his belly. "Splenomegaly" means his spleen is involved. 10.1 cm is about 3.75"

What the Radiologist Told us Verbally

It’s a pancreatic origin tumor that cannot be removed because it has wrapped itself around the portal vein (the vein from the liver). The tumor has ruptured and Max is bleeding internally. The radiologist is 95% sure that it is cancer.

Besides the ultrasound, he did an ultrasound guided abdominocentesis to draw some of the blood from his belly. He gave it to me in a tube to take to Max’s vet in case he wanted it analyzed for tumor cells and pathologized.

The radiologist suggested I talk with the general vet about options and outcomes. Surgery and/or chemo may be able to “de-bulk” the tumor and make Max more comfortable. The radiologist doesn’t think Max is in pain right now, just feeling shitty like he has the flu. I left the blood sample and US pictures off with the general vet (who won’t be in until Monday), and the radiologist will have the report faxed over.

I will not be taking Max for surgery on Monday because the vet already has said that if it were a tumor he could not completely remove, he would let Max pass on the table. No need to open him up; we know what’s there. And not yet time to PTS.

With the help of a vet tech friend on the FDMB, plans have been made today (to see a "fill-in vet) to do a little more blood work and to get a blood pressure reading to see how much Max is bleeding internally. I also know the signs to look for clinically: whitened gums, whitened paw pads, ascites (swelling of the belly).

I called back to the radiologist to see why he didn't do this blood test and blood pressure reading. He said that on clinical exam, US, and the visual on the blood that was drawn from Max's belly, it was not an active bleed. He echoed the cautions the vet tech had given me about clinical symptoms, agreed today's tests were appropriate, and also said to try and keep Max from too much physical activity. I was very distressed when Max fell off the bed last night, looking up at me with a "What the F?" look. I carefully lifted him back to bed.

I really screwed up last night and didn't test or shoot Ennis for his diabetes or take my own meds. Because of finding out about Max's cancer, I just curled up in the bed about 6:30 and tried to forget the world.

About 4am I was woken by Max on my right side and Ennis on my left side, both pawing my face. I swear it was synchronized. I had gone to bed without feeding them. I opened a can (I sometimes keep cat food in my bedroom), and plopped it down onto a single plate. They shared and ate most of it. I had to smile.

As I'm sitting on the can, Max comes in, sits down, and starts washing his face. Ennis PLOPS down on the bedroom floor. OMG! Hypo? Nope, one of Althea's Nip sticks. Then Lily (my dry food kitty) comes over to the food plate and tries to bury it.

All was well with the world, but then I started getting nauseous with fear over losing all this "normalcy' and woke Jim up to hold me while I cried. He didn't really want to do that; he wanted me to get myself a glass of warm milk and take my evening pills. That I did, as well as tested and shot Ennis and gave the cats a proper breakfast ~ 5am.

I also have made an appointment for a phone consult with his regular vet (back in on Monday) to see where we go next. Even if we could get rid of this tumor, Max would continue to be a diabetic, CRF cat. But we can't get rid of the tumor.

I also have an appt. with an Alternative Vet (the one who put Bailey down) for Max to have a Reiki massage and acupuncture on Tuesday, to make him more comfortable.

I also have gotten the phone number of a mobile vet who will come to the house for euthanazia, when that time comes.

Friday, February 23, 2007

Max's Ultrasound This Morning

I'm scared. I'm shaking so bad, I'm not sure I can drive. Max and Ennis are annoyed that there is no food or water. (Lily gets the crack room.) I don't want to give Ennis his behind closed doors because then Max will feel singled out (before he needs to be).

Wish us far better luck today than we've had almost any other day this past year.

Wednesday, February 21, 2007

GI DR Visit, Max and Lily Update

Jim and I both saw the GI Dr today. I have some elevated liver values, a slightly enlarged liver, and a "spot" on my liver that he wouldn't worry about except for the breast cancer. He asked whether I had stopped drinking alcohol, and I said no. He asked why. I told him all the issues I've been through in the last 3 months, caring for Jim, my failed implant replacement, how I have started counseling but that quiting drinking is way down my to do list there. He wasn't judgmental. He simply asked that I make sure it is on my to list. He ordered a followup abdominal CT scan for me in April.

He was really impressed with Jim's progress. He said that Jim has clearly "stabilized." Jim asked, and the Dr agreed to an increase in his fluid allowance from 1200 cc a day to 2000 cc a day. Dr. also agreed that Hospice may kick him out because he is no longer on death's door. Jim's sodium is now down back into a normal range, although his kidney values still are out of whack.

We both go in for a followup in 3 months.

Max is very lethargic and standoffish today. I can't tell if it that he is feeling bad from the tumor, or pissed and hurt from all of yesterday's trauma at the vet. Boy, I'm sure he is really going to be happy with the ultrasound and possible fine needle aspiration on Friday.

But he is picking at the Hill's A/D diet, formulated for cats that are faced with a serious illness, injury or surgery. Ennis also is helping to lap it up, but that's not good for him because it is 13% carbs, which he doesn't need with his diabetes.

I also have to give Max 150 ml of Ringer's Lactate a day, by Sub Q. And the vet gave me (free) the potassium and Vitamin B-12 to put in the bag. I got that all done last night, and inserted in administration line, but failed to put on the "brake." So all the fluid and nutrients ended up on the carpet.

I called the vet and they have sent a scrip to a local vet to provide me with the potassium and Vit B-12. And some more A/D, because the boyz have gone through 3 6oz. cans in one day.

Lily's bloodwork comfirms the early CRF. Her BUN is 53, out of range, although her creatinine is in the normal range. Her urine specific gravity was something like 1.017, which is really low. They want me to start her on a fatty acid supplement and Hill's K/D. Also enalapril for blood pressure. She is a dry food only cat. I have no idea how I am going to manage this.

I still have made no progress on the cluttered kitchen table, although I have taken my pills on time, which was the #1 chore.

Take care all.

We Might be Losing Maxwell

I took Max and Lily to the vet today.

I thought Max's recent weight loss and inappetance was his kidney disease progressing. Nope, he has a large tumor on his liver. The tumor was clearly palpable, and X-Rays confirmed it. Liver values are through the roof.

The vet is going out of town this afternoon for the rest of the week, so he can't operate until Monday. Vet said that he would open Max up and see exactly which organs are affected, and whether he could remove the mass. If not, he suggested not waking Max back up. Vet also said that as sick as Max is right now, he may survive the anesthesiology. I was instructed to say my goodbyes to Max before I drop him off on Monday. The vet said that waiting in his office for the outcome of the surgery would not be a good idea.

Vet gave me the name of a nearby veterinary surgeon in case I did not want to wait until Monday. Said it would triple the cost, but that a far more skilled pair of hands would be in there. Well, now Max gets anything he wants to eat. Even the evil dry EVO. Getting some weight back on him might help build strength to get through this.

At the urging of some members of the FDMB, I have scheduled Max for an abdominal ultrasound on Friday. This will give us a better idea of the nature of the tumor and its involvement with organs other than the liver. If it appears limited to the liver, he may have a fine needle aspiration to draw out tissue for pathology. (Unlikely the pathology would be available before Monday.) It the tumor/growth appears to be diffuse throughout the abdomen, there is no need to open him up, just make the decision to PTS at the appropriate time. I would like to find a vet who could come to the house to do it. Baring that, I may take him to the vet who put Bailey down in such a gentle way.

On a side note, civie Lily has now joined the kidney disease club.

Monday, February 19, 2007

Today's Drs

Dr. Chemo. What a nice man. He was very sympathetic to my implant failure, even took my glasses off my face and wiped my tears. (Of course, he doesn't have a dog in this fight.) He suggested I change from Effexor to Welbutrin as my antidepressant, but my GP won't "permit" the change without an office visit. Sure, yeah, I have time for that.

The DR suggested a second plastic surgeon opinion. He named a new PS in the area who moved here from the Cleveland Clinic because her husband was appointed chair of the hospital's brand new cardiac unit. He wasn't sure where she was practicing. This story sounded so familiar to me. I googled her name, but couldn't find her--found her husband. So I called his office to find where his wife was working. Jeez, no wonder it sounded familiar; she is my Dr. Half Boob's new partner. Wouldn't that make for an awkward 2nd opinion?

Dr. Chemo wasn't surprised that I don't have feeling in my fingers, toes, and mouth after the Taxol chemo. Said it was a good sign that I have the feeling back in my feet; it means I likely, over time, will regain my digits. See him again in 6 months.

Jim and I then went to the hospital's outpatient lab for our blood draws. What a zoo. We must have waited an hour.

Brought Jim back home and went back down to the cancer center for my counseling. What a child this Dr. in training is. Kimberly. Yes, Alice, Dr. Head is a little strange, now that someone with a mind like yours brings it up. Let's call her Dr. Emotion.

I poured out my heart. Having been through counseling before, I know how to do it. She did way too much head nodding, and whenever I would take a huge break from talking, she would chime in, usually with comments of empathy. She did agree I was betrayed by not being told the fact of the 40% failure rate for implants in irradiated tissue.

She kept asking what I could do to help my situation. I finally focused on the chaos that is surrounding me. I usually am a very methodical person, but there are so many places in my house and life that are completely out of control and I am overwhelmed/frozen by them. So we agreed on 3 "tasks."

1. I will take my pills on time every day, am and pm.

2. I will clean all the clutter off the kitchen table so that there is an appropriate and pleasant place for me to sit and eat a meal with Jim, should I care to.

3. I will make a list of all the other clutter places in the house that are troubling me. Just so I have a "to do" list.

That is what I needed. A plan that I could "work" and accomplish. I know it doesn't sound like much, but it is a big deal for me (and that kitchen table is a huge commitment). I can't start on it until tomorrow because tonight I have to get paperwork ready to take Max and Lily to the vet tomorrow morning. So much to talk with the vet about Max's kidney disease and inappetance.

I see Dr. Emotion again in 2 weeks. She's only there 2 days a week. That should work for me, and I might be able to make some headway on the "to do" list I put together.

She also encouraged me to try to get out, away from the house without Jim, for "fun" things. Because Jim and I haven't lived together before, my fun thing always was to go visit him at his drinking club. I may ask Liza to go to a movie with me this weekend. I am trying to get together with Kris (from FDMB) for a lunch. Hell, I may even take a walk around the block once it warms up this week.

Oh, the furnace shut down last night. Nothing I could do would bring it back. We ran space heaters all night and the fireburning fire place with the new doors (thank you again Kurt). Got a technician in this morning, and $250 later, got a new breaker switch on the furnace. OK, I didn't pay for the switch; I paid for someone knowing the switch was the problem.

Thank you all for your support. I told Dr. Emotion about the FDMB and this blog. She did not seem at all surprised that I could find support from cyberfriends on the Internet.

Sunday, February 18, 2007

Counseling Starts Monday

and it can't come too soon. I missed both my AM and PM pills yesterday, and that's not good. No meals either, even though I bought myself a filet of beef.

The GP had no recommendations for a psychologist. PT Bruiser said that she didn't have that tool in her arsenal, although she should.

Thank God I called the Breast Care Coordinator at the cancer center. They do counseling, free of charge, for cancer patients and family. I have an appt at 2pm with a PhD candidate who is doing her residency there. She's only be there a couple more months, but maybe I can get my grief resolved by then. If not, I'm sure I'll just move onto another counselor. Her name is Kim, but we need another "faux" name. Dr. Head? Almost Dr. Head?

So Monday, I will go to the cancer center for my followup with Dr. Chemo, Jim and I will get blood drawn, I will bring him home, and then another trip to the cancer center. (I hate that it's 45 minutes each way.)

Yesterday my great neighbor Kurt installed a new firedoor/screen on my wood burning fireplace. It looks great, and he did a great installation, even without reading all of the directions. Today, he's coming back to install another grab bar for Jim. The stairs from the dungeon to the main level only have a railing on one side. Jim wants a grab bar on the other side, which will help him up 3 of the 6 steps.

Jim has been wandering again. And not because he's confused. The last 2 days when I've been out of the house, he has come up the second set of steps into my bedroom/office area. He said he's just been checking on the cats. I feel a little violated. The entire space is a mess, but it's my mess. He is a guest in my house; although it looks like he may live here for the long term. I feel like taping the area off with that yellow police tape.

I told Jim that if he's feeling that well and is that mobile, maybe he should think about moving back to his own place, once he shows me that he can manage his diet. Maybe I will start teaching him how to use the broiler/convection oven to cook chicken breasts, pork tenderloins, and fish for dinner. He's already excellent with breakfast, and does a good job on sandwiches for lunch. I told him if he moved back, I would do his grocery shopping for him. And the Hospice folks could easily change locations to care for him.

Naw! Just a fantasy on my part.

Another thing to talk with the counselor about, I suppose.

Friday, February 16, 2007

No "Apology" from Dr. Half Boob/Next Week's schedule

He had the same "deer in headlight" look that he often has with me. He did pull the drain and told me to return in a week or two to make sure I wasn't retaining fluid. He started talking about sending me to Johns Hopkins for micro surgery for reconstruction, but I told him that wasn't in my cards. At the end, I told him that once I was physically and emotionally healed from this experience, I would likely have the impant removed. He seemed sad about that; like I told him he hadn't done a good job. Well, he hadn't. I got my scrips for prostheses and physical therapy.

I asked about the stats on implants in radiated tisse. He said 10% totally successful; 50 % are somewhat successful but there are cosmetic and "other" problems; and 40% fail, as mine did. I reminded him that I had known about the potentially unpleasant cosmetic problem because we had discussed it after the radiation oncologist warned me about it; but I did say that no one every told me about that total failure was a possibility. The deer look again. I told him that it had been a very tough 11 month with the expander just to get to failure.

I chatted with Kris and Jane (FDMB) later. She said it's all a liability issue. They can't accept responsibility or even apologize for a failed outcome, because they might get sued. She said they probably even have classes in med school about that. Kris is pretty smart.

Jim's Hospice nurse yesterday agreed that I need psychotherapy. She said I have a complex grieving process to go through.

So I'll call my GP and PT Bruiser today for recommendations.

Next week is pretty busy:

Monday: Routine follow-up with Dr. Chemo. Maybe he can find a way to give me my fingers and toes back. I also have started having muscle cramping at night in the arches of my feet and my calves. I don't know whether that might be "a sign" of something wrong. I am on Vitaimin E 400IU twice a day, but I was off of it for about 10 days around my surgery because it is a blood thinner. Also a blood draw for Jim and me for our GI appts on Wednesday.

Tuesday: Lily and Max to the vet. Jim may go to the senior center, depending on the ice in the driveway.

Wednesday: GI DR. Follow-up on my enlarged liver and bad GCT blood test results last fall. Jim sees the same guy for a routine follow-up. I think the GI guy will be very impressed with Jim's progress.

Thursday: Hospice nurse. Might even have lunch with Kris and her daughter today or tomorrow.

Friday: Jim to senior center.

I finally finished a book that Alice sent me for Christman. Dear John by Nicholas Sparks. A little sophomoric, not as good as some of his other work, like The Notebook. Basic premise is that an army enlisted man (John) serving overseas meets and falls for the love of his life (Savannah, a college Junior) during a 2 week leave back home to NC. She helps him develop a relationship with his father, who raised John. John and Savannah hold their relationship somewhat together for a few years, even though jerk John "re-ups" in patriotic ferver after 9/11. At the beginning of the assault into Iraq from Kuwait, he gets a "Dear John" letter from Savannah; she has fallen in love with someone else. This throws him into major warrior mode, and he re-ups even again.

Kind of mushy ending because several years later when he is home on emergency leave to bury his Dad, he reconnects with Savannah and meets her husband. Her husband is dying of melanoma. I won't give you the ending in case you want to read it. It is an interesting book.

Thank you Alice!!

Wednesday, February 14, 2007

I see DR Half Boob Tomorrow

Hopefully. It's mid day so I should be able to get out with the roads by that time. We've been really concerned about losing power. We've had some "flashes" of it. Jim is sitting down on the couch with a flashlight in his hand. The trees are full of ice and the wind is gusting at about 30mph, so we are getting alot of "crashes" into the house from the neighbors' trees.

Jim will have a new personal aide from Hospice starting tomorrow. Erica. This one supposedly cooks. He has to have a new aide because Kira sprained her wrist and is out on disabilty until April.

Then right after her comes the Hospice nurse. There's really nothing for the nurse to do right now because Jim is doing so well, and we haven't yet received the results of last week's blood tests. The only issues that Jim is having right now is the ascites (liquid filled belly), which the nurse can do nothing about, and skin tears. Otherwise, he seems happy as a bug in a rug. He has already set up a fire for tomorrow (or tonight if we lose power).

I got sick today. Had a warmed up pizza slice for lunch and tossed the whole thing. I have no appetite; I'm not eating; and I feel like shit. Still had to go out to scrape and salt the driveway, with little improvement to the concrete ice. But at least I got much of my car out from the ice shell it was in.

I am starting to think I need counseling. I am getting so overwhelmed with all of this. I started cleaning up my Office Inbox today (over 600 messages to read, resolve, delete, or file) and have only about 200 left.

I just want to rip out what little fuzzy hair I have. I am so concerned about Max being sick and not eating and me not getting him to the vet.

I think I need a counselor to go back over the last 14 months with me and help me to resolve my anger, disappointment, and failures to ask the right questions of medical professionals. I probably also need to work on my feelings that Jim, at any moment, could lose the ground he's made up and have to have 24/7 care again. Tonight I asked him whether we should return the wheelchair that Hospice provided for him. It's never been used; the original tags are still on it. Jim said no; that he may need it. Well, that was a bright star in my day.

I need to call my GP and PT Bruiser to get a recommendation for a counselor. They understand and seem to care about the pressure I'm feeling. Unfortunately, many counselors don't take my insurance (retired military) because they pay very little. When I had counseling before I moved here and before I married Jim (and got his insurance), I had to pay top price out-of-pocket (I think it was something like $90/hr) for her services.

My previous counselor Sally does do phone counseling. Maybe I should go back to her--via speaker phone. It took over a year, but she helped me resolve my anger toward my primary family, and helped me reconcile with Jim.

Well, for all of you who always think I am so upbeat, I'm not right now. I am in chronic pain, can't eat and feel like shit, and can't see my way out of my depression.

Tuesday, February 13, 2007

Happy Valentine's Day

This morning, a day early, Jim gave me a V day card and a box of chocolates. Apparently when Jim was out a couple weeks ago with a friend, he picked them up. I have no idea where he's been hiding them. I think it's the first time I have cried at getting a Valentine's card.

We spent the morning cleaning up the fruits and vegies and wrapping up meat for the freezer from yesterday's late grocery run. I had to cancel the vet appt for Max and Lily because I wasn't going to haul precious cargo in the snow. We ordered in a pizza (for me) and a broiled chicken grinder (for him), lit a fire, and watched a James Belushi movie named "Mr. Destiny." Never heard of it before, but it was really funny. It was one of the DVDs donated to us by folks on the FDMB.

I'm going to have to go out soon and scrape the driveway. Snow's not deep enough for the contractor who does our roads and driveways to come into the development. In Delaware, the state "kind of" takes care of the roads, and then only the major ones. We have a community assn where everyone chips in a few bucks each year for snow plowing and street lighting.

If it were going to be warm the next couple of days, I wouldn't bother, but that's not the case. I have "concrete snow" on the driveway.

I'm a little less depressed today. I even started cleaning up my email inbox. I now have only 289 unread messages in there!!! (Probably the same number of read but unsorted messages.)

I noticed today that I have feeling in the skin on my right breast side. It's somewhat numb (like my fingers and toes), but I can definitely feel. Can't feel a thing on the left side, where the implant is. The skin there is totally "nerveless." Isn't that odd?

Happy Valentine's all.

(And still saying a special prayer hoping to hear how Alice's follow-up breast ultrasound went today.)

A long day, yesterday now

Jim and I went to see the breast surgeon. No list of questions. Just wanted to know why what happened happened.

Four interesting things came from it.

She said she never got a message that I wanted her to call me.

She confirmed that implants in irradiated tissue often fail. When I started down the "why didn't you tell me" road, Jim stopped me and reminded me that we weren't looking to blame anyone.

She said that she wouldn't have wanted me to go down the "FLAP" reconstruction road (where they use my own tissue for reconstruction), because that can hide local recurrence of the cancer (whereas a silicone implant would not).

She understands disappointment. Her hair stylist recently told her that anymore attempts to lighten her hair to blonde would result in irreparable harm.

I'm sitting there with one fake boob and a drain on the other side and she's disappointed she can't be blonde? There must be some relationship there, but it was lost on me.

She suggested a prosthesis, with a frilly lacy really "cute" mastectomy bra.

She also agreed with what Dr. Half Boob had told me on the phone--6 months to a year of healing before trying any further reconstruction.


I asked on the FDMB for feedback on reconstruction. I got alot of wonderful support, and I am satisfied with my decision to do nothing for now. I am, and will be for some time, a single breasted person until I finally feel up to having the surgery to have the implant on the "good" side removed. Then I will go flat. That was, interestingly, my initial reaction to this whole thing. It's just a shame I had to go through all the pain I did to end up in this place.

I was supposed to see Dr. Half Boob after seeing the breast surgeon, but I cancelled. I had all the answers I needed for my decision, and I was tired. I will see him later this week when, hopefully, the drain is ready to be removed. I must say, once the surgical dressing was removed, I saw he did do a nice job on the left side. Nipple and all. (When I cancelled, the receptionist recommeded a store for a prosthesis.)

Later in the day I spoke with PT Bruiser. It seems she also knew that implant reconstruction on the radiated side was doomed to failure. Why didn't these people tell me this, I keep wondering? She is a very sympathetic person, and she suggested a different store for a prosthesis.

This is all so strange. I never had boobs until my 40's, and I thought I made it clear to everyone on the cancer team that replacing them wasn't really important to me. But when they made it sound it would be a walk in the park, I went along with it. Silly me.

Before I go onto other things, I want to thank everyone on the FDMB who are supporting me, including those who do not post publicly, but who send me private messages. I couldn't go through this without them. I also want to BIG TIME thank my brother Dave for coming to help care for Jim and me around my surgery. I think we may have re-established our relationship with each other. Thank you Dave. And thank you Kathy for supporting him in helping us.

Jim is doing wonderfully. He kept me straight during the DR appt. He is pretty much my brain right now. When we got home, he made himself lunch and talked on the phone with the bank and mutual fund company trying to confirm his moneys (that I have been trying to manage), and talked with a realtor about selling his condo and buying a ranch. Because we have weather coming in, he helped me with a brief shopping list and sent me off to the grocery to fight with the other snow winps over milk and bread. Because I am so depressed and not eating, he made his own supper, and reminded me to take my pills (which I haven't done for a couple of days). Boy, I sound pathetic, don't I?

I am pathetic. I just want to sleep for days, but the cats keep waking me for food. Max and Lily go to the vet this morning (weather permitting). Ennis is doing well on his new insulin.

That's about it for now. Thanks for listening (reading).

Our love to you all.


Saturday, February 10, 2007

"You Should Feel Lucky to be Alive"

A comment yesterday afternoon from a local friend who reads this Blog, and apparently disagrees with my anger and disappointment over the reconstruction. "What does that mean?" I asked. She turned away, saying something like "WELL, if you don't GET IT."

I am not currently Stage IV; I do not have metastatic disease at the moment, that I am aware.

I am Stage IIIA and believe that, given I chose reconstruction and my surgeon is being paid for it, I am entitled to one that works.

Friday, February 09, 2007

I Still am Angry

And can't get beyond it. I feel violated.

Thursday, February 08, 2007

Yesterday's Happenings

I am not having pain from the surgery. Discomfort, maybe. But I am taking Percocet to numb the anger and disappointment I am feeling. I was given a plan of care, I followed it to the letter (except for the physical theraphy) even though there were so many things going on, and I end up with one boob and am completely in the dark about where I go next.

I called the breast surgeon (Dr. Cutter). She hasn't called back. I called the radiation oncologist (Dr. Nuke), and he more wanted to talk a defense against blame rather than what I wanted, a plan and prognosis for reconstruction on the radiated side. I see Dr. Boob (or maybe now Dr. Half-Boob) on Monday and Jim wants to come along. He wants answers too.

I don't know why Dr. Cutter set me up with Dr. Boob. He's a kind enough man, has gone to great lengths to treat me, but sometimes seems like a C+ med school student, if you know what I mean.

I now have to do alot of research on tissue reconstruction and the nearby DRs that do it well. I also have to think about just going flat chested.

Today was a chore day for Brother Dave and me. My kitchen faucet wasn't putting out cold water, and it was slowly shutting itself off. We figured a new faucet was in order, because this was a contractor's model for which we would not be able to get replacement parts. I chose this behemoth faucet where the sprayer pulls out of the end. Dave put it in in about 1.5 hours. It stands really tall so that you can get buckets and tall pans under it. I'll get used to it. After he got it in, I still didn't have cold water, so off to the crawl space to look for ice blockage. A little rearrangement of insulation and leaving the crawlspace door open for awhile, and we got cold water back in the kitchen.

We also ordered a new door and screen for the fire place. We first went to a fireplace shop and I fell in love with one $1400 model (8 weeks to deliver). Prairie styling and bi fold doors with a cabinet (not draw) screen and I could choose the finish (something like 30 choices). I thought bi folds would be good because they would not get in the way of the fire tools that sit on the hearth.

We then went over to Lowes and found what seems to be a perfectly acceptable door in prairie styling. Not bi fold doors, but the cabinet screens, $340, and only in black. 2 weeks for delivery. Dave said he would return to install it, but I think I might can find someone here.

We went to Dick's Sporting Goods. Dave got himself some clothes, and bought a really nice insulated flannel shirt with snaps, not buttons, for Jim. Jim really likes it. I bought Jim some fancy skiing long johns and a exercise stair step platform. He doesn't want either of my gifts.

Off to Target. My brother Les and sister in law Donna had given me a digital camera for my birthday, but I needed accessories. I got a memory chip and rechargeable batteries using a gift card I got from Annie for Christmas. Thank you Annie. I forgot to get a camera case. Oh, well, I can do that later.

A little shopping at Trader Joe's, a little shopping at the pharmacy, and 3.5 hours later we got home. It was a nice outing for me, and I didn't worry about Jim a bit. He said he got lunch--ice cream and peanuts!!

We all had something different for dinner. It was a real 3 Stooges scene. Jim fried himself a hamburger, Dave broiled a trout filet, and I broiled a New Zealand filet mingnon. (Best filet I even had; got it at Trader Joe's; I highly recommend it.)

Today is Jim's "chore day" with Dave. He has to have a blood draw; get an ID card made so that he has access to SCAT (Senior Citizen Affordable Transportation), a half-priced taxi service; go to Jim's condo to pick up some things. For me, I want them to get pipe insulation to minimize the possibility of another ice block and take a few packages to the post office. I plan to nap in while they do their chores.

Dave has been really great, although he has serious pain with some oral surgery he had shortly before he came here. He just got up (6 am) because of the pain. He will be leaving tomorrow (Friday), after morning rush hour. Thank you Dave; you have been a real help here!!

Wednesday, February 07, 2007

Reconstructive Surgery

I had my reconstructive surgery yesterday.

My plastic surgeon called last evening.

The left breast went fine. It now has a "permanent" implant and a nipple.

The right breast has serious problems. This is where I was having pain. He started on the right, took out the expander, and found that the capsule (the tissue development around the expander) was holding fluid, which appeared to be somehat infected. He could see his finger through the skin, which means that I had been very close to having the expander "blow through" the skin. He put the silicone implant into the right, closed me up and then went onto the left breast.

After he closed me up on the left, he thought again about the right and went back in to remove the implant. He felt I would infect or "blow through" the skin. As a result of radiation, the skin there is paper thin. I asked whether I should have had less rads, and he said no; he said riding the body of the cancer was much more important than cosmectis.

He said I would need 6 to 12 months to completely heal from the radiation (if I would heal completely at all). After that, I could reconsider reconstruction on the right, but it would not be a silicone implant. I would have to have muscle and skin relocated from my belly, my back, or my butt (the butt thing would be at Johns Hopkins or in New Oeleans).

I am so disappointed, but not surprised, with the news on the right. If I had known he couldn't do both with silicone, I might have decided against reconstruction at all and just gone without these damned explander implants all this time. I truly would not have mided being a flat chested, bald, middle-aged woman. I am so disappionted that this is not over. And until I see both sides with the dressings off, I won't be even able to start deciding what I want to do, except cry with the disappointment. ( I am a small boned, 120 lb, 5'5" woman that has little muscle/skin to spare from other parts of my body.)

Friday, February 02, 2007

So Many Changes

There have been a number of changes this week, and I'm sorry I haven't updated.

Jim and I checked out two nearby senior centers, and chose the one closest to us, which will provide him bus pick-up and drop-off two days a week for $1 each day. The annual membership fee is $20, but because it's mid-year (they are on a June 30 fiscal year), they will only charge him $10. They are letting him do a couple days free to see how he likes it.

He went for a half day today (because of his light bulb treatment). He found himself a recliner in the "library" and read his book until lunch time (he took his own lunch), then went back to the library, took a chair nap, and then read some more. He also walked the hallway for exercise--WITHOUT his cane!! I've given him grief for that.

He said he thought going to the Center is do-able. However, he says he won't go back until maybe next week Friday because:

  • Monday he has light bulb treatment and his GP.
  • Tuesday I will be having surgery (I'll get to this next).
  • Wednesday and Thursday he wants to stay home and worry about me.

OK, the surgery thing. This is to replace my expander implants with the kinder, gentler silicone implants and give me nipples.

Surgery was supposed to be Friday, February 9. I saw the plastic surgeon yesterday (Thursday) and complained greatly about the pain on my right side, a combination of the radiation burn/scarring and the damned square and pokey expander implant. (With tears running down my face I'm telling him about my pain.) I thought he would want to delay surgery until I felt better.

NO. He wanted to advance it. Said let's get the expanders out, you will feel better immediately. He tried to find a slot for me in today's surgery schedule, but the best he could do was next Tuesday.

All sorts of scrambling to reschedule things. Thankfully, my brother Dave who was coming up on Thursday to care for Jim and me over the weekend already had the rest of the week off, so he can come and go sooner. He'll drive up Monday after he finishes some dental surgery he is having done. (Eek! I hope he lets the anesthesia wear off.)

Liza was going to take me to and bring me home from the hospital (this is out-patient). She was going to stay in the waiting room the whole time in case there was a problem. She took a half day off work to do this (she drives a school bus). Well, she can't just up and change her schedule like this, so I will get to the hospital either by cab, my own car (and leave it there), or Dave and Jim will take me. Then my neighbor Nancy will pick me up when I'm released. Liza will come over after work to make sure everything is going OK here. (Bless her heart.)

So this weekend will be a whirlwind of preparing for company, stocking in food, and cooking in advance. Who needs the Superbowl with this kind of excitement!!

I'm trying to plan a visit to Longwood Gardens in April or May for nearby people on the FDMB. We should have a grand time. Any non-FDMB people--Annie, Pam--please let me know if you want to be part of this outing. Annie, we've talked forever about going to the Gardens together. (OK, maybe now I'm thinking maybe we have gone together. CHEMO BRAIN.) There may be an FDMB member coming over from Harrisburg, so you two could ride share. Overnight accommodations will be available, with Jim's condo sitting empty.

Sad news today about the mid-FL tornado(s). Turns out they ran through the area where Betty, the one who came to help me when Jim was in ICU, lives. I was able to get in touch with her husband Don by email, and he called, and they weren't even aware of it during the night. However, a large amount of damage has been done close to them. Thank goodness for the Christian/Jewish/Good Samaratin Gods that watch over those two. They have such a special place in our hearts!! Betty is my Angel and Don is Jim's best friend from childhood.

I may not update again until a day or 2 after surgery. I will make arrangement for Julie to post my post-surgical status on the FDMB, and for Steve to repost here, or link to it. (OK Julie? OK Steve?)