Jim Seemed Better Today, and Other Things

Jim seemed much better today. He was still weak in body and voice, but his eyes were sparkly and his smile was strong when I first saw him.

I got there at 10am and (maybe because it was that I complained yesterday) he had been fed, bathed, and had a fresh bed. He looked great!!

Jim and I had a nice quiet morning. He wanted to read the sports pages, so I went a couple of places nearby in search of the Philly papers. The GI specialist showed up shortly after noon and said that Jim's morning blood draw showed that his values continue to decline, so even more meds are being ordered. After the specialist left, Jim said the guy is just a pessimist. I laughed.

I just can't keep up with all the meds. At this point, I just have to trust.

I failed to ask the DR, but thank God the nurse did, and the DR ordered physical and occupational therapy. What's the difference? we wanted to know. PT teaches Jim how to walk, to use a cane and walker, to walk up and down steps, to get in and out of bed. Occupational therapy teaches Jim how to take care of his daily needs: dressing himself, getting in and out of the shower/bath, fixing food.

I was so scared this morning, thinking I would find Jim either significantly improved or significantly worse (and maybe in ICU). I was so happy (and teary) when I saw he was stronger.

Here in the Wilmington area, there are three hospitals. Two (Wilmington Hospital and Chrisitiana Hospital) are owned by one corporation: Christiana Care Corp. Jim is in Wilmington Hospital (which is downdown) and I have been getting treatment at the cancer center at Christiana Hospital (which is well south of town).

Tomorrow, I get a full scale pulmonary function test at Christiana Hospital at 10:30. At 12 noon, Jim is being transported from Wilmington Hospital to Christiana Hospital for a pericentesis at 1PM. That is the procedure where a radiologist uses a syringe to draw the fluid off Jim's liver.

(And I'm thinking, KISS! After my right breast mastectomy, I kept draining. For weeks, I would drive to his office and Dr. Boob would draw off that fluid with a little "tap-tap-tapping" to locate it. What's with all the ambulance from here to there and back and a radiologist and a fluorscope to find the fluid. OK, maybe I'm wrong and sticking a syringe into the belly near the liver is different, but my neighbor nurse says she often had done pericentesis at bedside.)

DRs are starting to mess with my schedule for next week, surgery week. On Tuesday, I had been set up for a PAP and coposcopy in the AM, and a lung CT scan and consult with the thoracic surgeon in the afternoon. (That consult was to again evaluate what the heck is going on in my lungs. May I say, I continue to improve in my breathing.) Now the surgeon wants me in his office in the morning.

I have pushed this PAP/colposcopy forward 2 times, trying to get it past chemo but before surgery. (This is the situation where I keep getting abnormal PAP results, and cervical cancer is nothing to sneer at.) Now I have to try to see which office blinks first on rescheduling, but keep both appointments for next week.

Thank you all for your thoughts/prayers and best wishes.

I'm Getting Scared Now (by V)

The GI DR gave us an update yesterday. Confirming what I had observed about Jim's reaction and behavior, he said that the blood tests showed that Jim's condition had worsened over the weekend and now is quite serious. The liver continues to fail, and now the kidneys are having some trouble. The DR put Jim on cortosones (prednilosone) for his liver and something else for his kidneys. Of course, Jim continues on various vitamin and enzyme supplements and gets medications for his confusion/anxiety.

I thought Jim's confusion Sunday was bad, because it was combined with anger/refusal to cooporate with the hospital staff. Monday was worse. Jim was confused, but it was like he had given up, like he was saying, "I don't know why you want what you want, but I'll do what you want." Maybe I shouldn't have told him the rule was "do what the staff wants you to." It was so sad (broke my heart) to see such a strong man broken down so much. God, I love him.

The GI DR indicated that right now Jim's prognosis is uncertain and his timeline is openended.

I had significant trouble with the level of care in the hospital yesterday. There were no nurses aids available to help with Jim and the RNs were overwhelmed. It was completely unacceptable. I was doing things that I should not have been doing to care for Jim. I lodged a complaint with the head of nursing, like that's going to do anything.

I woke up during the night in such pain from pulled muscles and my neuropathy that I had to take Percocets.

I may have to reschedule my breast surgery over this. God, I am so glad that my friend Annie has agreed to come help with my surgery. That is one lifeline I am holding onto right now.

Please thoughts and prayers for Jim. If you want to send him a card, you can mail them to my address, 503 Ruxton Drive, Wilmington, DE 19809.

I don't mean to be harsh with folks, because I know they are just showing care, but I've got about 6 of Jim's friends that want me to call with daily updates on his care and condition. I can't do that much. Just as I created this blog for updates about my cancer, I need to find a solution for updates about Jim. Maybe I'll try to find one or 2 people to talk to and let them send the word out to the others. I'm just concerned about the telephone game errors that can happen. (These are folks that for the most part are not computer literate and don't know about the blog.)

Another solution might be to post a notice each day or two on the bulletin board over at his drinking club. Yes, that might be the ticket.

Cats are fine. I am fine, although pretty tired and sore. No work-work, no yard work, no outside the home chores getting done. But I am big time loving on my husband, which is the most important right now, even though he likely won't remember it.

Thank you all so much for the thoughts and prayers and cards and such you have sent to me. Love you!

Update on Jim

Sunday was Jim's 3rd day in the hospital.

Since our first report on his condition, he's had a doppler ultrasound and a lung/abdominal/pelvic CT scan. He continues on vitamin supplements and Lasix, a diuretic. The DRs are focusing on alcohol-induced cirrhosis. On Sunday, the GP said there is no evidence of tumor. Jim also had eight vials of blood drawn and the results showed he was low on magnesium, which he then received in an IV drip.

Jim's new roommate at 3AM Sunday morning came in with seizures and disorientation from alcohol withdrawal. The noise and commotion left Jim very confused and agitated, and the nursing staff gave him a tranquilizer, Ativan.

Jim's confusion continued later into Sunday morning. He refused to work with the nursing staff telling them, Venita was coming to take him home. When V got there at 10AM, the start of visiting hours, the room's LPN took V aside and explained how Jim was being uncooperative and that she could not finish cleaning his bed and gowning him for the day. (Many people are intimidated by Jim's strong-willed manner. This LPN looked like a deer in headlights.) In the room, V found Jim in street clothes with his belongings on the table, ready to be packed to go home.

V put Jim's things away, and got him to allow the staff to finish their morning chores. It took a couple hours to get him settled down and for him to understand that he was being kept "in jail" for a few more days. His spirits lifted as the day went on. V was disappointed that the Phillies/Mets baseball game was cancelled Sunday afternoon; that would have provided Jim a nice diversion and "grounded" him in a bit of his own reality.

(For those who don't know, Jim is a huge Phillies fan and went to the team's Spring Training in Clearwater, FL, for the entire month of March for maybe eleven years straight.)

Apparently Jim saw a gastroenterologist before V got to the hospital. Jim had no memory of that visit and his chart showed no notes except "continue treatment." In the morning, a urologist visited. The nursing staff had tried to put a bladder catheter into Jim on Saturday, but had blown the balloon in the urethra, not the bladder. Jim had been bleeding since that little misadventure. The urologist said Jim was OK but that the bleeding would continue for a few days. The hospital based GP visited in the afternoon. He discussed the magnesium deficiency and the current diagnosis.

When V left for the day at 7PM, Jim was in high spirits, although he had been drifting in and out of sleep most all day. He ate quite a bit of both meals served while V was there. He was having some visual hallucinations (he kept seeing movement in an impressionistic print of flowers on the wall), but those visions were not agitating him. V made sure Jim understood that the rule for the night was "do what the nursing staff says" and let the staff know they could call her any time if she needed to talk to and calm Jim down.

Yep, Venita is whipped. Continuing problems with tingly feet. She made plans with the nursing staff to be into the hospital Monday morning at 7AM to be able to speak with all of the DRs. If Jim progresses at the rate he is going, he will likely be discharged from the hospital around Thursday. Still a question of discharge to where. Jim is now refusing to consider a transitional facility, whereas V believes that (depending on Jim's condition), that may be a better idea than coming home with her. The week after next, she has appointments/procedures prepatory to and, of course, the surgery.

Sigh. Such speedbumps on the road of life.

Now it's Jim's Turn, Unfortunately

V decided that if Jim was too sick to go to the thoracic surgeon with her, he was sick enough for her to get very serious about him seeing his GP ASAP. She got him in Thursday afternoon. A couple hours before the appointment, V was running Jim through the shower (his dizziness makes it dangerous for him to shower alone), and she found he was severely jaundiced.

First words out of the DR's mouth two hours later: why are you so yellow? He did some initial evaluation, including for disorientation, which Jim had exhibited earlier that morning, and scheduled him for a direct admission to a local hospital. GP diagnosed Jim as having liver disease (although he used the scary term liver failure).

Jim and V came home and waited and waited and waited. Finally got a call Friday morning to come to the hospital "immediately." Rushed down there, and in the morning only got an initial consult with a hospital-based internal medicine practitioner and a blood draw. Had to wait until 4pm for a room and 4:30 for an abdominal ultrasound. A gastroenterologist (GI DR) showed up around 5:30.

Jim's primary symptoms are-

1. Jaundice (he looks like a yellow post-it note);

2. A distended belly that means fluid is accumulating around the liver (V thought his shirts had been shrinking) (OK, you who know Jim will say he has had a "pregnant" belly the last who-knows-how-many years, but he had been slimming down lately);

3. Darkened urine from the presence of bilirubin, which results from the breakup of the hemoglobin of dead red blood cells (normally, the liver removes bilirubin from the blood and excretes it through bile); and

4. Spider veins on his belly.

His possible secondary symptoms (present and past) are dizziness, queasiness, inappetance, edema (swelling) of the lower legs and feet, skin rash, and difficulty breathing. He has no abdominal pain.

From the initial blood and US tests, and a health history, the GI DR has initially ruled out liver cancer and focused on a cirrhosis (advanced scar tissue) through chronic alcohol use. However, her practice (there will be 2 different GI DRs the next two days) will continue to consider these probable diagnoses--

1. Hepatitis, which is an inflammation caused (most likely in Jim's case) by viruses or poisons;

2. Cirrhosis, which can be caused by viral hepatitis, alcohol, or other liver-toxic chemicals (including some of the prescription drugs Jim may have been on recently, the GI DR needs to check Jim's records with his original GP); and

3. Cancer of the liver.

Other possibilities that the GI DR mentioned that V didn't quickly find mentioned (or discernible) in the wiki article on the liver and liver diseases were--

1. Vascular (a clot in a vein);

2. Fatty liver (which despite having read about it on the FDMB, V still doesn't understand);

3. OTC drugs, such as Tylenol.

Tomorrow's procedures will include a different kind of US (doppler) that will look for vascular involvement, more bloodwork (to look for iron overload or other metabolic causes), and a drainage of the fluid in his belly (with culture and analysis of the fluid).

Starting tonight, Jim is getting a multivitamin and folate and thiamin, B vitamins. This is because if chronic alcohol use is the cause, his system is generally run down and depleted in many vitamins, especially the Bs. He also will be started on a low-salt diet (which is not that far from how he eats now) and a diuretic (water pill).

A social worker came in to talk about the possibility of institutional care after Jim's discharge from the hospital. (Jim will likely be in the hospital until Monday night or later.) Jim and V didn't think it was necessarily a bad idea for Jim to be in a facility for a few days to a week after his release. Given where V's health is right now, she can't give him the help (or patience) he needs. (The nurses/techs at the hospital are being so patient with Jim's wobbliness. V. just sat there in wonder today, because she doesn't have the strength to do that.)

V did look at the history that Jim's GP sent to the hospital with her. Jim has been going to his DR for annual blood tests since 1996. Interestingly, the only tests that have been done were cholesterol and PSA (for prostate). Nothing in the way of a CBC or other "full blood value" testing. (V has no respect for this DR. He used to be her DR, for a short time. What the hell is this all about for a 65 YO person?)

After more than 13 hours on her feet today (or sitting in a chair with her feet on the floor), V's feet and legs are dying. She almost fell getting out of the hospital. Her neuropathy is bad enough without putting constant weight on it. Hopefully, that chemo side-effect will be gone soon.

It's Good News

The thoracic surgeon does not think the spot in V's lung is cancer. He said this spot has become smaller and more consolidated from the June CT scan to the August CT scan. He showed V a side-by-side comparison on his computer screen. In June it was a large diffuse area of "something." In August, it was a smaller, dense area of something.

He's not certain what the something is, but he suspects we are watching the formation of dense scar tissue from the infection/inflammation that V had this June (the fever that put her in the hospital).

A lung cancer tumor, in his experience, grows larger over time (rather than shriking and consolidating as this something has), and lung cancer does not change size as quickly as this something has. The surgeon said a malignant mass this size would take several years to develop, while V's something has shown up with remarkable speed. (He also confirmed what Dr. Chemo had said that it wasn't metastatic breast cancer.)

The surgeon wants to do an extensive pulmonary function test and another CT scan a couple days before September 8 (the scheduled date of the mastectomy/reconstruction). Depending on the findings then (such as the rate and nature of the change in the mass), he might preempt Dr. Cutter and Dr. Boob and take the operating room time that already is booked for V to do a procedure (maybe a needle aspiration). He doesn't want to piggyback on the mastectomy because he said V shouldn't be under anesthesia as long as it would take for all three procedures. He did agree that diagnostics on the lung do take precedence, but that the mast/reconstruction won't impede what he has to do because he goes in through the back or the side.

V asked whether someone was going to call Dr. Cutter to let her know what was going on and that she might get pre-empted in the OR. (Those following the blog know that Dr. Cutter is a ball-busting bitch). The thoracic surgeon smiled and made a comment that showed that he had no love lost for Dr. Cutter and that he would take care of her. I guess his livelihood does not depend on referals from Dr. Cutter.

Jim wasn't able to make the appointment. He's very weak and wobbly and almost disoriented. His eyes look jaundiced. V tried to get his GP to see him tomorrow, but no openings. V will keep him at her house for a few days with intent to take him to the ER if he doesn't do some snapping out of it.

Thank you

So many of you have contacted us about the latest development with V's lung. Thank you for your electronic/telephonic/snail-mail/in-person hugs.

We see the thoracic surgeon today. Wish us strength and lots of Kleenex.

Thoracic Surgeon Appointment

Wednesday, 3 PM Eastern. No procedures planned; just talking. The office understands the urgency of coordinating with the 9/8 mastectomy/reconstruction surgery.

Thoracic surgeon is Dr. Bruce Panasuk (pronounced Pan-A-SUCK). We still need a nickname. Maybe Dr. Chest Sucker? What else? Cindy? Charlie?

Nurse neighbor Mary brought V a hummingbird feeder yesterday. Mary hung it on a shepherd's hook outside V's kitchen/FL room windows. She said it may take up to a week to attract the birds. V was on Mary's back deck this AM and her feeder there had ~ 4 hummingbirds at one time. They were making bird noises and resting on the feeder holder from time to time. V didn't know they did that.

Nice weather today. Low humidity. Crisp, clear. Almost springlike.

Jim went home after a weekend here of eating and holding. He says he will call the DR today about his dizziness/inappetance. He is using the cane V borrowed from one of his neighbors. It makes him much more sure footed.

We are getting over the devastation.

A Meaningful E-Mail

Before the possible lung cancer scare came up, Venita received an e-mail from a professional colleague that profoundly touched her. V asked the writer for permission to publish her comments here (anonomously) and the writer generously agreed.

V,

We don't know each other very well, but still I wanted to write to you.

I have been monitoring your blog ever since I found the link in your return address on your [business]emails.

I had heard that you had breast cancer from colleagues, but I naively thought that breast cancer was an easily treatable condition. I've never been close with anyone with the disease, so I thought, based on popular media, that breast cancer was usually found early and easily treated. What an eye opener your experience has been! Breast cancer may or may not be identified early. And the treatments are torturous.

I've read blogs of cancer patients before and been fascinated by the issues that arise in those situations and feel great sympathy for those afflicted, but because I haven't met them, so I have always felt a little detached. I don't feel detached with you. We haven't spoken many times, but I feel we are similar in many way--[our profession], a love of cats, a focus on the work goals that others don't always understand, a need for order in life, and enjoyment of a glass of wine at the end of a day.

I thank you for being so open in your blog about your experiences with this disease. I'm sure that everyone who has read it has made a more serious commitment to monthly breast self exams. I was generally very lax about self exams, thinking that annual mammograms were enough. I've been dissuaded of that opinion and, of course, conveyed that to my family and friends.

If I were in your shoes (and able to emotionally detach from my situation, which of course, you are not), I would try to focus on the things in life that I enjoy most. Yes, you have surgery and radiation treatment (and who knows what else) ahead of you, but there still must be things on a daily basis that give you pleasure. I for one enjoy seeing my cats greet me when I come home from the work day, for example. And I enjoy seeing the birds cavort in the yard, especially the hummingbird feed at the feeder. There are always enjoyable things in your life. Hold on to them.

V, you still have a long row to hoe, but you will get there. Hang in there. I see you have lots of friends who how care about you based on comments in your blog, but don't forget there are others who are less familiar with you that too care very much about your success against this disease.

I don't have anything profound to say. I just want urge you to keep a positive attitude.

You haven't mentioned how the cats react to your various medical procedures. Are they comforting and snuggly when you feel weak? Or are they put off by the hospital smell? My experience is that cats are aloof for a day or two after hospital visits. But then they have only a short term perspective on the world.

Best of luck to you in your next series of treatments.

Still Can't Catch a Break

V was in the midst of writing a blog update on her cats, on Jim, and on her 3 DR visits this week, when she got a call from Dr. Chemo. Now all that other stuff seems unimportant.

V had a CT scan of her lungs Thursday. Dr. Chemo said that what on X-Ray looked like a pulmonary infiltration (which V has come to learn means “something somewhat minor but we don’t know exactly what it is”), now with the CT scan appears more solid. What does that mean? Dr. Chemo said it’s a 2 cm area that’s not metastatic breast cancer but that may be lung cancer. This is in the upper lobe of V’s left lung.

Dr. Chemo wants V to consult a thoracic surgeon next week. The thoracic surgeon may do a needle biopsy or a bronchoscopy, where they go into V’s lungs with a scope and take a look around and excise tissue out for pathology. There is some basic information about diagnosing lung cancer here.

Some may ask how lung cancer can occur during chemo for breast cancer. This is just a guess. Chemo is targeted to a particular kind of cancer. The chemo for breast cancers may not affect lung cancers.

Any name suggestions for the thoracic surgeon? Cindy? You’re among the best at these names, although V’s former husband did come up with PT Bruiser for the physical therapist.

We’ll let you know how this goes. For the time being, we are devastated.

The left breast mastectomy had been rescheduled for September 8. Dr. Chemo said that the spot in the lung takes precedence.

Feeling Scared (by Venita)

I was going to put this into an email to a friend who wrote to offer support.

I decided this was not something with which to burden a single person, so I decided to put it here. I'm not asking for sympathy. I'm just asking that you understand that all my "I'm so fine" talk is sometimes a smokescreen that hides my fear.

It was hard when I recently found out that my cancer was staged as advanced. I have no self-image problem with having both of my breasts removed. I am troubled that the surgery to remove my right breast and some axillary (armpit) lymph nodes has left me with a reduced range of motion in my right arm, which is my primary arm. I am troubled that something (maybe the pneumonia or maybe the chemo) has left me with a reduced breathing capacity.

I wonder what kind of disruption (lifestyle and side effect) the upcoming seven weeks of radiation will bring.

I want all this treatment crap to be over, and I am fearful of metastatic disease showing up during or soon after treatment. Breast cancer is known to move to the bone, liver, lungs, and brain, and there is no “cure” for that; just more slash/poison/burn treatments. I don’t want to go there.

So Much News

Venita's Birthday

Today is Thursday, August 10, 2006, V's 54th birthday. She gets to celebrate it out without her final infusion of chemo (see the previous post). This was slightly disappointing because Cindy (an FDMB member) was going to come up and play her cello in the chemo room for a couple of hours.

Family Visit

V's brother Les and his wife Donna left Tuesday after a week-long visit. It was fabulous to have them here.

Les has MS, and he and V were able to share the trials and stumbles of having peripheral neuropathy. Unfortunately, Les's neuropathy is permanent whereas V's is chemo induced and she is expected to fully recover. Because of their troubles walking and the heat for most of the visit, we did no "fun" things like the zoo or gardens.

As Donna likes to say, Les is handy as a shirt pocket. Despite his MS, Les did numerous jobs from V's honey-do list. Among his achievements was the installation of two ceiling fans. The one in V's bedroom (with a remote control) is just the ticket for a woman with chemo-induced hot flashes.

We ate like crazy during the week, which made V very happy after her recent bouts with inappetance and mouth ulcers. Donna is a fabulous cook. Les is on a diet for his MS that involves little to no fat and no red meat. So while Les would eat main courses like crab legs, the rest of us would get a little of that together with our red meat. Yum.

The only downside of the visit was V's strong attraction to Les and Donna's cigarettes. But she held strong, and today marks 5 months of being smokefree.

Ennis's Diabetes and Max's CRF

Ennis and Max saw the vet last week.

Ennis is currently at diabetic blood glucose levels. Vet confirmed that Ennis has severe periodontal disease. He had a dental cleaning with several extractions in April, and there is nothing right now to "dental." Vet said some of his patients with this condition need periodic antibiotics (maybe quarterly) to push down the infection. Ennis has now had a 5 day course of ABs. That has reduced his BG levels, but he is still on insulin.

Max is diabetic, but not currently needing insulin shots. He has advanced from "early chronic renal failure" 6 months ago to god-awful official CRF. Urine specific gravity 6 months ago 1.030; now 1.017. Urine draw from cyscocentesis was almost clear. He's lost another 1.5 lbs in the last 6 months; down to 12 and 1/4 pounds.

Venita was told about early CRF 6 months ago, given certain meds, and told to change Max's diet to lower protein and phosphorus. He's been taking the blood pressure medicine regularly (and he did have a reduced BP), and V only got with the potassium gluconate and the derm caps liquid (fatty acid) supplements a few months ago. She bought the new food 5 months ago, but never pushed it because she got caught up with her own health problems. Vet said no subQ fluids yet.

Venita will be "consulting" with Julie because her diabetic Smokey also has CRF at about the same stage as Max. V chatted with Julie today and she has done alot of research on CRF foods and fluids.

Surgery Scheduled

The left breast mastectomy/expander implant is currently scheduled for September 22. That date was selected based on the expectation that there would be a chemo infusion today. Without that, the surgeons may be able to move the surgery back two weeks. V will try to remember to call today for a reschedule.

CELEBRATE!! Done with Chemo

V saw Dr. Chemo today for him to write the orders for her final chemo.

After he listened to her woes about her severe peripheral neuropathy, he said they had poisoned her enough. To do more would put Venita in a wheelchair.

No more chemo. It's over.

Will soon post about all the great things the last week with V's family visit, etc.

Mouth Ulcers, Family Visit, Ennis Update

Mouth Ulcers

New side effect with infusion 3 (of 4) of the Taxol. Mouth ulcers. Venita had these with the earlier chemo, so she has tools in her toolbox, but unfortunately those tools are not very effective.

These mouth ulcers differ from the earlier ones. Those were swollen glands like from tonsilitis or the mumps. These ulcers are open sores like from chewing on your cheeks and tongue. Venita's face appears swollen.

Venita is taking an antiviral for the ulcers, and hoping that the Dilaudid that she is otherwise using for the bone pain will minimize the mouth pain. She will have to call the oncologist on Monday, and likely take a drive down there. Sigh.

Family Visit

Venita's brother Les and his wife Donna arrive on Wednesday for an almost week-long visit. We so hoped the weather would have cooled down some so that we could do some outdoor things, like the Philly Zoo. That may still happen, but we are looking into alternatives, like the NJ State Aquarium in Camden, across from Philly on the Delaware river.

Of course, Venita has her ever-ready "to do list" in case Les and Donna would like to do some chores around the house.

Cooking for and feeding this group is going to be a challenge. Venita has little to no appetite. Les is on a no-to-low fat diet, including no red meat. Jim's stomach is completely screwed up with worry about Venita and not being fed well. Donna is trying to support Les's diet, but really, if you don't have to, how many broiled fish/seafood and fresh fruit dinners can one eat?

Venita put Les and Donna on notice: Venita will cook the first night, but after that, they can have the keys to the car to go to the grocery/butcher/Trader Joe's/farm stand.

Venita and Jim are very excited about having Les and Donna visit. It's been almost a year since they've been together, and everybody is worried about how everybody else is taking Venita's cancer diagnosis. This will give us all a chance to talk/walk/hug through all those feelings.

Ennis Update

It's likely that only those from the feline diabetes community will understand this detailed babbling. For others, the bottom line is that Ennis still has severly diabetic blood glucose levels, but for the most part is acting like he feels OK

Venita's attempt to aggressively slam Ennis's blood glucose (BG) numbers down into a normal range is not working well. She started using Dr. E. Hodgkins' protocol and sliding scale on Sunday, but she is getting mostly high numbers--at midnight Ennis's BG was 372, +6 after a 2U shot. So Venita gave him 4U. Venita is not sure how much she trusts this "shooting into rebound" theory, but she'll try it for a couple of days.

Meanwhile, Tuesday's vet visit for an exam and to draw blood and urine to look for an infection can't come too soon. Venita wants to get Ennis on antibiotics ASAP.

Dr. Chemo Visit and Other News

Not Dr. Chemo actually; another oncologist in the practice. We'll call him Dr. ChemoReplacement (CR).

Venita got the go-ahead for chemo tomorrow (#7 of 8). Blood counts are good. She's going to start methyl B-12 for her chemo induced peripheral neuropathy, if Maxwell will share his pills. Since maybe chemo 3, Venita has had tingling in her fingertips and toes, but now she is starting to get weakness in her knees.

Dr. CR agreed with Venita's concern that her breathing problems might be heart related, and ordered a MUGA scan (see MUGA scan defined here). Venita had one of these scans before the Adriamycin chemo because that drug is contraindicated with a weak heart. Adriamycin also can damage the heart.

Dr. CR explained that the MUGA scan measures the efficiency of the heart at pumping blood out of the left ventricle. "Normal" is around 60%, meaning that each beat/constriction of the heart moves 60% of the volume of blood out of the left ventricle. Venita pre-chemo rate was 72%, which could be indicative of high blood pressure. (Venita was running somewhat high on blood pressure before she got on Paxil for stress.) The follow-up MUGA scan rate will be compared to the pre-chemo MUGA scan rate.

Other recent events:

Venita had a pulmonary function test at Dr. Primary's office last week. No official results yet, but the tech indicated that Venita's breathing is weak. (We guess Venita telling them that wasn't proof enough.) The deep breathing for the test put Venita down for 2 days.

Yesterday was Maxwell's one-year anniversary of his diagnosis of diabetes. As part of the celebration, Venita did blood glucose tests on both Max and his littermate Ennis. Max was fine; Ennis showed diabetic numbers (in the mid 300s). Ennis is back on insulin, but the bottle in the fridge is old and doesn't seem to be doing much.

A friend took Venita for a ride on a Harley motorcycle last week. She hadn't been on a bike since the early 1980s. It was a short safe ride, and Venita really her brief stint as a biker chick.

Dr. Cutter Follow-up

We saw the breast surgeon, Dr. Cutter, yesterday. The purpose of the meeting was a check-up and to plan the left breast (LB) mastectomy. The big news is that the LB mastectomy will likely be the week of September 18.

We asked Dr. Cutter to explain why the LB mastectomy was needed. It hadn’t registered with us that the biopsy sample taken was almost 8x6x3 centimeters—-huge for a biopsy sample. The invasive lobular carcinoma in that sample was only 2 millimeters and excised with clear margins.

However, when the full sample was dissected onto 10 slides, 7 of the slides showed ductal carcinoma in situ nearly all the way up to all of the edges of the sample. There also was lobular carcinoma in situ present. Therefore, the educated guess is that such “peppering” of in situ cancer was throughout the breast, perhaps even past the area that would be excised in a mastectomy. (In situ cancer is basically a precancerous condition; in situ cancer is not know to metasticize.)

Dr. Cutter warned us that the in situ cancer may not show in a pronounced way in the pathology on the mastectomy tissue because Venita has been through chemo, which will have shrunk the cancerous tissue. We are aware of that, and do not plan to play the “we didn’t need a mastectomy” second-guessing game after the pathology is back. Because of the chemo, Dr. Cutter also expects no sentinel node involvement.

We also asked for the staging group on Venita’s right breast cancer. We hadn’t really been prepared for this information before. It is Stage IIIA. According to some statistics, the relative 5-year survival rate for patients diagnosed from 1995 to 1998 with that stage was 67%. That means that that 33% of the women diagnosed with Stage IIIA breast cancer during that 4-year period died from their breast cancer within 5 years of diagnosis. (Yes, this scares us.)

Breast cancer treatment has improved, so Venita’s odds are better than this average. Venita is undergoing aggressive treatment, so her odds are better than this average. Venita has an aggressive form of breast cancer, so her odds are worse than this average. Overall, we think her odds are better than this average, probably around 75%.

Information about staging breast cancer and survival rates are here.

Nearly 75% Down the Chemo Road

Yesterday, Venita had the 6th of her 8 chemo treatments!! Almost at the 75% mark (she doesn't count a cycle done until the beginning of the next cycle).

The Taxel is much easier with side effects than the Adriamyicin/Cytoxin, although the infusion is tougher. Tougher infusion of Taxol because of the pre-chemo infusion of Benadryl, which makes Venita hyper. Also, Venita is running out of veins for the infusion. Yesterday, it took 3 sticks, and she came away with 2 very large bruises. Easier side effects if the last Taxol cycle is any indication; Venita is planning to again have bone pain and abdominal cramping this weekend, but hoping against it.

Venita is starting to get her overall energy back. Today she is multitasking with laundry, some house cleaning, and work-work. It's been maybe 4 months since Venita did any serious housecleaning (she's had someone coming in recently), and although she is not a housecleaning diva, she enjoys a clean house and is enjoying the cleaning of the house today.

Venita's breathing also continues to improve; it's at maybe 75% of normal. Dr. Primary is going to give Venita some sort of breathing capacity test next week.

Dr. Chemo said Venita should not have chemo and radiation therapies at the same time. He said it would result in a bad cosmetic outcome. He did not expound, but Venita plans to ask Dr. Cutter at her followup appointment next week.

Venita is looking forward to, but with anxiety, the mastectomy on the left breast. Looking forward to it to advance this whole unpleasant but necessary process. Anxious because (1) the delay in surgery may have allowed the cancer to spread to the lymph nodes, thereby making radiation on the left breast necessary; (2) the possibility of serious post-surgical complications similar to the ones (hematoma, wound necrosis, and drainage problems) that she had with the right breast; and (3) potential complications that might happen by placing an implant on top of the intercostal (between the ribs) neuritis. But we are trying to be positive and take the attitude that those things won't happen.

Hot Flashes

You may be aware that chemotherapy induces menopause. Before chemo, Venita flirted with menopause; now she's full blown into it.

Biggest problem is hot flashes. It has mostly happened at night when she goes from a sitting to a reclining position--lasts 20 to 30 minutes, feeling hot and sweating. Now it's starting to happen during the day and without a position change.

Any suggestions besides a fan to reduce the hot flashes? No hormonal suggestions please; hormones are contraindicated with breast cancer--fuel to the fire, hormones feed the cancer.

July 8 Update

Nine days past her first Taxol infusion, Venita is doing OK, but disinterested in much besides sitting and resting. She has, however, been able to get some work done this week.

There were side effects from the Taxol. Two days after the infusion, Venita had bone pain in her skull and pelvic bone, and strong cramps throughout her abdomen. She took Dilaudid, and rotated Tylenol and Advil, and went to bed for about 48 hours. She then was constipated (maybe a side effect of the Dilaudid, maybe a side effect of the Taxol), and played the Fibercon/Immodium dance most all week trying to get her GI tract back to a reasonable balance. Venita also has a hardened and tender vein where the Taxol was infused.

Eating is going better. More foods are starting to taste like themselves and not sawdust. Venita had a pizza for lunch yesterday and it was good.

Venita's breathing is also better. Seldom does she need to stop to catch her breath. Head hair also seems to be growing a tad.

Venita doesn't know whether the improvements are a temporary result of having taken a 3 week break from chemo, or instead a permanent result of moving onto recreational chemo. We are so hoping it's the latter.

Venita saw her primary care physician on Thursday. She got the paperwork for a 90-day handicap placard for the car and a scrip for an inhaler that would make breathing a little easier. Dr. Primary didn't want to reduce Venita's Paxil; in fact she wanted to increase it, so it's staying the same. Dr. Primary dealt with Venita's concern about her trouble breathing and possible heart damage by addressing her lungs and prescribing the inhaler.

Next week, Venita sees Dr. Boob for a final fillup of the expander implant and Dr. Chemo for approval for chemo infusion 6 of 8 on Thursday.

We've scheduled out the remaining chemo infusions (if they stay on schedule), and found that the final chemo is on Venita's 54th birthday! August 10 is going to be a major celebration day.

Venita's thinking that if Dr. Boob is now going to wait to change out the implant until after radiation, then maybe Venita can get started on radiation concurrently with chemo. She'll be talking to both Drs. Boob and Chemo about that next week. She'll also likely have to talk with Drs. Cutter and Nuke if she gets OKs from the first 2 doctors.

You all take care.

Venita and Jim!!

First Taxol Infusion

Venita had her first Taxol infusion yesterday. Three "pre-med" IV infusions and then the Taxol. Two of the pre-med infusions--Benedryl and something else for nausea--had an odd cold burning feel going in--like the cold burn of BenGay or IcyHot.

The Benedryl put Venita into hyper-mode. She normally avoids Benedryl because of that reaction. The first hour of the Taxol infusion, all she could do was squirm around in her recliner, wanting to crawl on the ceiling. She was finally able to get to sleep and the final two hours of the Taxol were in slumberland.

Venita has had no Taxol side effects yet and is feeling remarkably well today. She got about an hour's worth of garden weeding done and plans to do a little garage clean-up. Not noticing shortness of breath. No fever; last night experienced hot flashes (which is "normal"). There were thunderstorms last night so Max and Ennis hid downstairs rather than waking Venita up every two hours for food, so she slept fairly well.

Saw Dr. Boob last Thursday and got another 60 ccs infusion in the expander implant. (340ccs so far.) Dr. Boob says one more infusion in 2 weeks. The implant now is just about the size of Venita's real left breast. He also said he's not going to replace the expander implant in the right side with the silicone implant during the left breast mastectomy this fall. He says he will wait and "change out" both the left and right side expander implants at the same time--after radiation. (Keep your fingers crossed that radiation won't been needed on the left side because if it is, it has to be done after the expansion, and that would put the implant change out into the spring instead of the winter.)

Only one doctor's appointment next week--Venita's GP. Venita is looking forward to that. She thinks it is time to cut back on the Paxil because she's been getting really low blood pressure readings.

Venita also wants to find out whether there has been cardiac damage from the chemo and because Dr. Chemo won't order the tests, she's hoping the GP will either talk to Dr. Chemo or order the tests herself. With Venita's pre-chemo EKG, stress test (echocardiogram), and Mugga scan, there should be plenty of baseline to evaluate potential cardiac damage from the chemo.

Back to Chemo

We saw Dr. Chemo this morning and he cleared Venita to start Taxol, the recreational chemo. She starts Thursday, and will get infusions every two weeks. She will have training on Wednesday to find out what drugs she has to take with it and the possible side effects, but so far we've heard it's relatively easy and only causes muscle aches.

Venita's temp has only broken 100 degrees four times in the past week. She still has serious shortness of breath, but it is getting slightly better. And it seems her taste buds might be coming back some; she ate soup the last couple of days, a big step up from juice and jello. When asked, Dr. Chemo suggested Venita smoke marijuana. Although medical marijuana is not legal in Delaware, he said that "people manage" to get hold of it.

P.T. Cruiser called today to get details on Venita's failure to show up for therapy. (PT's been on a 2-week vacation and Venita thought moving from the chair to the bed was therapy.) PT released Venita from therapy and told her to show up with a new scrip once she started feeling up to it.

Dr. Boob put more saline in the expander implant last week. It's now up to 280 ccs (capacity is 450). So the end is drawing near on that process.

Thanks to all who have offered words and thoughts of encouragement during what has been a very difficult time.

BTW, Bailey's cremains came home last Thursday.

"A Touch of Pneumonia"

...According to Monday's chest X-ray, says Dr. Chemo's office. That might explain the fever and shortness of breath. Venita is now back on oral antibiotics.

Home from the Hospital

This week, Venita spent from Monday night until Thursday noon in the hospital on IV antibiotics. Dr. Chemo and a doctor who is an infectious disease specialist kept trying to figure out what is causing the fever.

Venita had blood, urine, and stool cultures, chest X-Ray, CAT scan of the chest, abdomen, and pelvis. Nothing that would be a possible cause showed up. On Thursday morning, Venita asked to come home because there was nothing happening at the hospital that was improving the situation. Dr. Chemo seemed somewhat pissed, but OK'd the release.

This was Venita's first ever hospital admittance. She was in the oncology ward. Food was so bad she asked food services to stop bringing her a tray. Her roommate got a DX of lung cancer the morning Venita was leaving. Why couldn't they have done that somewhere private?

So the fever continues, but it is not peaking as high as it was. Now it is only peaking in the 102 degree range. and it is taking longer to peak; sometimes 6-8 hours instead of the previous 3-4 hours. Last night, for a brief period, Venita felt like the fever had broken. She could think clearly, and move without pain and fatigue.

Venita is on Tylenol therapy, but no oral antibiotics.

Venita sees Dr. Chemo on Monday morning. Chemo is on temporary hold for now.

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Goodbye Sweet Bailey

Adopted on Venita’s 42nd birthday, August 10, 1994.

Euthanized June 9, 2006.

Bailey came to us as Brad. He was a perfect Tuxedo; beautiful. He had been “in custody” at a no-kill shelter since May 29, 1992. When he was trapped at a truck stop in Danbury, CT, he was believed to be about one year old. He was at least 15 years old when he was put down; we think he was older, maybe 18.

Brad resided in the “shy guy” room in the shelter and not handled or socialized to people. His first adoption a month earlier failed.

Brad was feral. He was terrified of people. Often, Venita wondered whether he was autistic.

Venita didn’t like the name Brad. She wanted to name him Crocker or Crosby. But he wouldn’t respond to a name unless it started with B. So Bailey he became. Jim nicknamed him Buddy. Venita nicknamed him Bail and BailButt.

It probably took about two years before we could even look at Bailey without terrorizing him. He would camp himself under the kitchen table and watch us. If he ever saw us looking at him, he would take off for another location. Should he have ever gotten out of the house, he would have been irretrievable.

Although declawed in the front, Bailey was a holy terror to corral for the annual vet visit. Once, as Venita was going up the stairs to corner him in an upstairs hallway, he jumped onto her back and pushed off with his back claws. He was strong! The only way to get Bailey in the carrier in the early days was to outlast him during the chase around the house.

As Bailey got older, and arthritic, we were able to approach him more easily, but he still let us know when we were not welcome by growl, or full-mouthed hiss, or getting up and leaving. Where Venita now lives, Bailey had 2 ½ rooms. For the winter, he had beds next to the furnace registers in the dining and living rooms. For the summer, he had the Florida room, where he could lay in sunbeams and next to the screen door for most of the day. His dining room bed was his “safe place;” and it was often there that Venita could approach him for petting, headbumping, and brushing. Looking back, Venita did not approach him nearly often enough. Out of the way like that, he was easy to forget. Sometimes, a couple days would go by without Venita seeing Bailey. He would sneak into the kitchen for food when Venita was on another floor of the house or sleeping.

There were times over the years that Bailey would join Venita in bed, but only after she had laid down and usually only while the light was still on. He was ever vigilant against the terror of people, even though he desperately wanted to love and be loved.

If Bailey hadn’t gotten along with the three other cats (Maxwell, Ennis, and Lily), he would have been returned to the shelter. But Bailey loved our cats. Small problem was that he wasn’t socialized to cats either. He would walk straight up to Max and Ennis and give them a full frontal headbump at anytime, even when they were eating. This lack of feline socialization persisted to the end. Bailey also didn’t realize that at 15 pounds, he didn’t have to be subservient to the bitchy little 9 pound Lily. She would haul his ass around the house, showing him that she was not the lowest kitty on the pole. But that was Bailey; a most gentle soul.

We got Bailey so that we would have an even number of cats. Venita thought that with four cats, everyone would have the chance for a friend. It didn’t work out that way, but the dynamics of four was very different from the dynamics of three, and we would not have missed a day with Bailey.

Bailey always had been overweight, but he got grossly obese the last couple years. The swinging cow belly look. With his weight, coupled with his arthritis, it was painful for him to get around. But Bailey NEVER failed to make it to the litter box, even though it meant having to painfully negotiate steps and sometimes brave a gauntlet of Jim and Venita watching TV in the family room. Starting in November 2005, Venita withdrew Bailey’s dry food and he slowly lost weight and became much more active again. He started jumping into the bedroom window about 2 months ago, an activity he enjoyed but had given up some time back.

Bailey’s desired weight loss continued past ideal and he started to look boney. About a month ago, Venita noticed a housewide bout of black-green diarrhea and mouth foaming, but she was on her way out the door to therapy. When she returned, she found Bailey on the chair in her room foaming at the mouth and oozing diarrhea. Directly to the vet that day and the next, but nothing but “no result tests” and shoulder shrugs. In the course of 6 months, Bailey had lost about a third of his body weight.

The day of the diarrhea/mouth foaming, Bailey stopped eating and didn’t eat again. Never pooped again either. Despite Venita’s best efforts at things like trying another vet and getting probiotics, appetite stimulants, SubQ fluids, and food soup into him, she was completely unsuccessful at turning his condition around. Yesterday, he “slid” down the stairs to the litter boxes, because he could command his back legs no longer. He was skin and bones. Venita scooped him up, put him in the “sick room,” and called the vet for an appointment today to put him down.

This morning Venita put Max into the sick room with Bailey. Bailey loved Max the most, because Max came to put up with the headbumps and would let Bailey eat and drink from a plate/bowl with him. Max didn’t want to go near Bailey (we suspect Max could “smell” the nearing death), but Bailey loved just having Max in the room. He started purring.

At the vet’s office, Bailey pulled himself around the room exploring and trying to give us his loud angry meow, which he could not manage except as a nearly noiseless chirp. The alternative vet and the vet tech were very kind with the procedure. Venita stayed in the room watching and crying; Jim couldn’t stay.

The vet sat with Bailey on the floor and gave him a rubdown to the sound of new wave music. He loved that vet and her touch. She gave him the first shot to put him into a “coma.” He really fought the effect, but finally rolled over onto his right side. She rubbed him more, and then inserted the IV line into his rear leg. As she started to inject the barbiturate, he took a final deep breath. The vet checked for a heartbeat, pronounced him gone, and invited Venita to stay as long as she wished. Venita stayed, petting Bailey’s silky black fur, feeling how pliable his body now was, headbumping him, until his foot pads started getting cold. She did not give him a belly kiss. Bailey had never allowed that in life, and Venita had promised him long ago she wouldn’t violate his dignity when he died.

Even though Venita would like to know what took Bailey, she is not having the vet open him up. The vet suspects diffuse cancer.

Venita will pick up Bailey’s cremains a week from Tuesday.



Saturday update: Overnight Venita had shaking chills and a temp of 103.6. She’s under orders to call the oncologist with that type of condition. She may just end up in the hospital this weekend.

Into the Fire

And we thought the frying pan was bad. Venita white blood cell (WBC) count on Tuesday morning was 300 (normal is 3800 to 10,800). Dr. Chemo called her in on Wednesday, and she showed up in 3 layers of clothes plus jacket, ski cap, neck scarf, and shivering like a naked polar bear. Temp was only 102. Dr. wanted to put her in the hospital for two days for IV antibiotic. Venita declined; the cat Bailey is on ABs and fluids and may need to be put down when he returns to the vet on Friday.

So Dr. Chemo sent Venita to an outpatient procedure unit for the IV ABs. At release, her temp was 104. She continues in bed and on Tylenol. This morning's temp was close to 99 and the bed sheets weren't soaked. Maybe there is an end to this tunnel.

We'll call Dr. Chemo this morning for followup. Good chance he'll want a stat CBC to assess whether more IV ABs are needed.

Been AWOL

Where have they been? Where are the updates?

First of all, we want to recognize Robin’s distress and her post on the FDMB asking for prayers for herself. Called back on her mammo, Robin has an area in her right breast for which she will receive a sterotactic needle biopsy on June 21. Robin you know that you are totally in our thoughts and that we will be walking with you every step of the way through your challenge.

The week of May 22, being the second week of Venita’s 3rd chemo cycle, usually would have been her good week as side effects diminished and she regained her appetite. She had looked forward to a Memorial Day picnic where she could enjoy eating a grilled cheeseburger and corn on the cob.

But certain side effects became worse, in particular major fatigue, alternating chills and sweats, an incidence of vomiting (no associated nausea), and hardly any food that didn’t smell like cat food or taste like sawdust. All in all, it was nearly impossible for Venita to function. She cancelled two of her 3 physical therapy appointments, and PT Brusier sent Venita home from the one she was able to drag her butt to.

Friday, Venita saw Dr. Chemo, and the reasons for many of these problems became clear. Near the end of the appointment, Venita asked what the white blood cell (WBC) count from her Tuesday blood draw had been, and it was only 1200. (Normal range is 3800–10,800 and the previous Tuesday, her count had been 4800.) Dr. Chemo surmised the fatigue and chills/sweats are the result of an infection and put Venita on antibiotics. She also spent several full days in bed. Bought a digital thermometer and found her temp was fluctuating between 96 and 105 degrees.

Dr. Chemo surmised the vomiting without nausea so late in the cycle was not chemo-related, but rather reflux. His office had advised Venita to take a particular over-the-counter product for this two-weeks before, but once Venita learned the cost, she had called back in for something prescription, but that had fallen through the cracks. Dr. Chemo wrote and Venita filled a scrip for Prevacid. No more vomiting since.

Through the Memorial Day weekend, Venita remained pretty low key. She was able, thankfully, to have her 4th chemo session on Tuesday, May 30. Getting the infusion was touch and go for a bit because Venita’s fever had been up to 102 degrees the previous day, but a WBC count of 12,000 saved the day.

That is the last of the brutal Adriamyacin/Cytoxin chemo, and Venita now moves on to the recreational chemo—Taxol. Everyone promises fewer side effects—likely achiness only. Four session; one every two weeks. Last chemo should be on July 25. Seems only a short 8 weeks away!!

Venita also is taking a break from physical therapy until after brutal chemo is completely out of her system.

Bailey the sick feral cat is not doing well and also needs your thoughts. He is starting his 3rd week of not eating. His blood tests are now showing distress/disease in his liver. He is getting (yesterday and today) IV fluids and antibiotics at the alternative/conventional vet. Hopefully, he will be able to undergo a dental procedure this afternoon; the guess is that an inability to chew set him on this failing course. He is either going to rally here soon, or we will lose him. If the latter happens, we will be very hurt, but he will have had a great run!!

The Week of May 15, 2006

The big appointment weeks are starting to become second nature.

Jim's Dermatologist

Monday Jim saw his dermatologist and had a pre-cancerous skin lesion frozen off. Follow-up in 3 weeks.

V's GP

Monday V saw her GP who gave her a new dosage (3 mg) of the second sleeping pill--Lunesta. Seems to be working. Now if Venita could find the off button on Max's stomach alarm, be wouldn't be waking Venita every 2-3 hours for a snack. Venita really created a monster with this 24/7 free feeding wet food solution to his diabetes. Speaking of feline diabetes, the blood glucose level for Ennis, Max's littermate, continues to be in a nondiabetic range since his dental procedure.

V's PT

Monday also was a PT day, as was Thursday. Because of the increased wound fluids drained last week at the mast site, we've cut range of motion exercises back to fewer reps and for the weight training exercises, either cut back to 1 lb. weights, or cutting the exercise out altogether. Seems to be a correlation between the ramping up of the exercise level and the increased fluids. Thursday also was a "slow" PT day because of fatigue from Tuesday's chemo. (V went to Dick's Sporting Good's and got herself those multicolored foam-covered barbells in various needed weights.)

Chemo

Monday's final appointment was a pre-chemo chekup with Dr. Chemo's nurse practitioner, Betsy. A few tweaks on side-effect medications. The biggest side effect is bone pain, which results from V's Neulasta shot on Wednesday, which helps to raise her white blood cell count. Instead of waiting until the onset of the bone pain on Friday pm/Monday am, V starts 2 Ibuprofen every 3 hours on Wednesday, the day of the shot. Then 2 Dilaudid every 3 hours is layered on top on that starting Friday pm. Here it is Saturday am and no bone pain yet. Betsy also approved the use of ginger capsules (as suggested by Martha and Alley Cat) as a supplement to help with queasy stomache.

Chemo #3 was Tuesday. Venita drove herself and slept through most of the procedure. Came away with a couple large bruises. One is in her hand where the nurses were trying to find a new infusion spot but "blew past" the vein. Another bruise in the actual infusion spot, which worries V because one of these chemical can cause tissue necrosis if it is released outside the vein. Big immediate side effect this time with fatigue. V came home and napped another 4 hours, and then got 14 hours overnight.

Wednesday, V went to crash at the home of local friends Ellen and Dick. She just showed up unannounced about 3 pm looking for a sanctuary from things to do and things to plan, and looking for someone to take care of her. V said just to leave her sleep except to wake her in time for PT the next morning. Ellen left V sleeping in this huge Daddy-Bear sized chair in the living room until 5:20 (dinner soon). Dinner was fried white-fish (V doesn't eat fish, but it looked and smelled great), asparagus, and twice-baked potatoes. V filled way up on the vegies. Watched two hours of TV--one of CNN evening news commentary and one of Baltimore Orioles baseball. V then headed home. She had had enough sanctuary time to rejuvenate her, and there were cats to care for and meds to take.

Dr. Boob

Venita saw Dr. Boob for another drainage on Thursday. He agreed there was fluid in there, but he couldn't get it out and the needle poked something inside that hurt (the first time that's happened) so he gave up that effort. Dr Boob had spoken with a colleague about the continuing fluid in V's seroma and that colleague suggested that Dr. Boob begin filling the temporary/expander implant--that might "squeeze" the seroma and "encouage" V's tissue to absorb her own fluids. Sounds logical, and that's what took place. He put 60 ccs of saline into the expander. The saline in the implants makes it feel more comfortable. It reduces the "hot spots" in the expander that were being caused by it sharp, 90 degree corners. But that's this time. Seems to V (from other Personal experience she has read) each fillling might bright "relief" or "discomfort."

Capacity for the temporary expander imlant is 450 cc, which at a weekly fill rate of 60 ccs would mean between 6 and 7 more fill-up sessions. That would finalize the filling about the same time Dr. Cutter wants to start planning the left breast mastectomy. So perhaps the swap-out of the temporary implant for the permanent implant could take place in the same surgery. Time wise it will work, but we need to talk with Dr. Boob about whether he also sees that as a possibility. He might have some concerns about cross contamination between the two surgical sites, or maybe concerns that V would have overly diminished strength/capability because of a bilateral procedure.

Sick Bailey

V's cat Bailey continues to be sick. Continuing inappetance, minimal bowel movements, dehydration (he's on sub-Q fluids). This has been going on now about 10 days. New current symptom--that wet-sounding breathing that he has had his entire life, but which he has not exhibited since he had been losing weight with the switch to an all-wet diet.

Yesterday V put the vet together with a compounding pharmacist. The meds are now in a Fancy Feast Savory Salmon-based oral preparation that V syringes in and most of it stays in. V also made an appointent with another Vet; the earliest she can get in is Tuesday later morning. We hope he makes it that long (euthenasia looks like a strong possibilty here), and are prepared if we need to take him to the ER vet.

Some Thoughts From a Sucky Couple of Days

V saw Dr. Boob on an emergency basis yesterday. Pain and swelling in the wound. He drained 120cc, the buildup in just 3 days.

TV programs (talk shows, news) are focusing on breast cancer--a big tie-in with Mother's Day. Venita's head keep screaming "I have cancer!" She has been trying just to stay in the moment and avoid those thoughts.

Bailey the feral cat is very sick. He's been losing weight and has had a run-in with inappetance, constipation, and diarrhea the last couple of days. When first observed, he also had frothing at the mouth. Two vet visits, most blood values normal, vets are stumped but still charge outrageously for their "professional services," guest room converted to a cat hospital, SubQ fluids for dehydration, Cypro to build appetite. Frankly, he doesn't look like he's going to make it. But he's had a good, long life for a feral cat.

Chemo #3 coming up on Tuesday; 3 appointments on Monday.

Quote from a teleconference sponsored by Y-Me: We see ultrasound as a secondary screen for women with dense breast tissue. When we compare cancers that are not seen on the mammogram in women with dense breasts as opposed to women with fatty breast, the false negative rate of a mammogram may be as high as 30 percent... . . ...Yep, we know that mammo is a lousy diagnostic tool for certain breast types and certain cancers. But the ultrasound and the MRI didn't turn out to be all that hot either.

Pain Management and Other Matters

Neighbor nurse Mary has been working with Venita on a pain management schedule for the bone pain. There has been some tweaking; at present the schedule is (a) 2 Ibuprofen and 1 Dilaudid followed (b) 3 hours later by 2 Tylenol and 1 Dilaudid followed (c) 3 hours later by 2 Ibuprofen and 1 Dilaudid, and so forth. Venita ends up in bed alot on this schedule. She will keep this schedule up through tonight, except she will not take Dilaudid if she has to drive within 4 hours.

V has been in bed so much that she is now having trouble being there. The clock seems to take four hours to go from 12:21 am to 12:28 am, all the time V is dozing.

Christine, a professional hairdresser and daughter of a friend, buzzed V's head on Sunday morning. V says her head now always feels wet, like she just got out of the shower.

Venita skipped her physical therapy on Monday because of the pain and pain meds, but plans to go today. We are naming the therapist P. T. Bruiser! Thanks Charlie, V's former husband, for the name.

V got drained 50ccs on Monday (a week's accumulation) so Dr. Boob doesn't want to see her for 2 1/2 weeks (for check-up and maybe saline infusion) unless V experiences continued fluid buildup.

V did get a little gardening in yesterday--planted 2 flats of impatiens. One flat of everbearing strawberries and 2 periennials in this morning. Hopefully the rest of V's nursery buying spree--one flat of impatiens and a broom bush--will go in yet today.

2 months today--no cigarettes. V wants one to "celebrate."

V is delevoping lists of OTC supplies and of soft foods for chemo. The lists are here. She also added a link from the "permanent" list on the right side of the page.

Week's End Update

Ouch! Bone pain and throat swelling started Saturday. V had a good morning working in the gardens and doing range of motion exercises, but she couldn't move much in the afternoon. She took some Dilaudid for pain and went to bed about 9pm. Maxwell (the diabetic cat) kept waking her every 3 hours for feeding. V will likely end up back in bed soon.

V didn't see Dr. Boob for the 2nd draining this week because he had a hospital emergency. V didn't need it though; looks like the draining is really slowing. She will see Dr. Boob on Monday.

We both saw Dr. Cutter this week. DR was impressed by V's overall condition, although concerned that the mast scar continues not to completely heal. She gave V a scrip for a super-duper antibiotic cream. Next follow-up with Dr. Cutter will be between chemo treatments 6 and 7 to plan the surgery for the left breast mastectomy.

V saw her GYN for her every 4 month PAP this week. V has a low-grade dysplasia caused by the Human Papilloma Virus (HPV). The dysplasia could turn into cervical cancer or go away. This has been going on for about 2 years.

V discussed with her GYN her disappointment about how his PA dismissed V's right breast lump in December. He said he would look into it.

V's hair is not long for this world. Today, May 7, is deemed the official fallout day. Bill P, a local friend, is the winner. Now we have to determine the prize.

V thought Donna B. would do the hair buzzing, but that isn't working out. V is looking for a substitute, and Jim is not an option. V may not be particularly attached to her ears, but she would prefer to keep them!

Chemo 2

Chemo 2 was fine. Jim came along, but V drove back and forth to make sure she could do it.

Real panic before we left for chemo. V is to take an anti-nausea pre-treatment. She went to open the blister pack and the capsule spilt apart and sprayed all over the kicthen. Thank God the onc ward had samples.

The onc nurse infused the Cytoxen really slowly this time because of V's side-effect of facial pain. Nurse said that effect is common with Cytoxen and that slow infusion helps minimize it. Jom wasn't prepared for the extra hour of treatment; got antsy and asked the nurse--does V have to get the whole bag? V asked Jim to go take a walk.

Onc nurse also explained that the facial flushing comes from one of the nausea medicines, and was more than willing to answer questions about why does this happen, why does that happen? Nurse been in this ward for 13 years--vast experience.

V gets her Neulasta shot tonight when neighbor nurse Mary gets home from work. V is going to give herself the shot but she wants Mary to watch to make sure she does it right.

V had PT again today. Range of motion already is improving. Got more exercises to do and starting to use "equipment" like weights, pulley, and treadmill. Also getting some massage to drain the lymph nodes.

Three appointments tomorrow--Dr. Boob, regular GYN, and Dr. Cutter.

Physical Therapy and Other Info

Venita started PT yesterday. So now we have a new player, and we'll need a new name to ID her. All suggestions welcome.

The therapist is a soft spoken woman, but she has something of a "take no prisoners" attitude. She warned Venita that she's menopausal and can have "postal" days. Also warned Venita that Venita also is, with chemo, now menopausal and will do the same.

Walked Venita through 4 arm/underarm stretching exercises that she has to do 3x/day, 5 reps. Discussed how critical posture is to avoiding lyphedema. Demonstrated how Venita needs to start gentle massage on her left breast biopsy scar and on the healed portions of her right breast mast scar to avoid having the scars "adhere" to the underlying tissue. The therapist also wants to see Venita ASAP after Dr. Boob drains her right breast wound so the therapist can demonstrate how Venita can "massage" the area to lessen the amount of fluid that accumulates. (Later in the day Dr. Boob said this was all stuff and nonsense in V's case because the fluid is collecting in a cavity in the "capsule" that is forming around her implant.)

PT is 3x/week for 2 months. There are 5 basic objectives to the therapy:

1. Scar flexibility
2. Posture (the pain in the incision and nearby sites/fear of being "bumped"/and embarassment can cause women with mastectomies to develop round shoulders
3. Range of motion
4. Strength
5. Cardio-vascular improvement (bodies that are CV healthy heal better and tolerate chemo better)

The therapist is a gardener and sees yard work as a possibility to expand therapy activity. Therapist thought it was right wonderful that Venita mowed her front yard yesterday.

Yes, V did mow the yard thanks to John K, a local man who did the spring service on V's mower free of charge and showed her how she could vice-grip the blade cut-out lever in the on position so that the mower (which has a slightly bent crank shaft after a run in with a stump last spring) would start easier. Thank you John!!

Dr. Boob drained V later in the morning. Jim went along; the first time he had seen this process. V's drainage is slowing down. Only 100cc in the 4 days since the last drainage. Dr. Boob says maybe only two more drainings.

Chemo #2 this morning. V is fearful for some reason, so Jim is going along. V thinks the fear is of the upcoming side effects, not the infusion itself. The mouth lesions with Chemo 1 were pretty serious, and we sure don't want a repeat. V bought antibacterial gel and has a bottle in nearly every room of her house, one for the car, one for Jim's house, and one for the neighborhood bar we frequent. She may develop OCD over this.

This Week's News

The wound drainage is not slowing down. Dr. Boob continues to draw off about 70cc/day for each day since he last drained it. (Two syringe drainings this week, and every week going forward until it stops retaining fluid.)

Dr. Chemo's office called Wednesday and told Venita she had misunderstood the orders and that ahe only gets chemo every 3 weeks. Venita was, hummm, a little upset looking forward to 6 months of chemo instead of 4 months. Turns out there was a typo inputting some info into the computer. Venita is on a 2-week cycle and will get Chemo 2 on Tuesday May 2.

Venita had a face-to-face with Dr. Chemo today. He said her problem with swallowing is that she has cold sores/mouth ulcers in her throat. Dr. Chemo was pretty surprised by that serious a side effect this early in the game. He put her on an anti-viral medication. Dr. Chemo also wasn't surprised/concerned by Venita's two marble-sized axillary lymph nodes. They have been there since the surgical drain was pulled in mid-April and none of the DRs see anything wrong with that condition.

Venita gained 6 pounds since her last weigh-in on April 18. Not sure how that happened, unless it's the mid-night trips to the fridge for ice cream.

Venita got a new sleeping pill (Lunesta) that she hopes to try tonight. She didn't want to use sleep aids the last two nights because she was watching Ennis after his dental procedure on Wednesday (he had 6 teeth/roots extracted).

Need Rice Ideas

Read this morning that a "recommended" diet for chemo-induced diarrhea is BRAT--Bananas, Rice, Apples, and Toast.

Can handle the BAT, but Venita doesn't eat rice. She doesn't like brown rice (too dry), puffed rice, those cardboard rice cakes. Might be able to handle rice pudding if it's not too sweet.

Any ideas for making white rice palatable other than a base for stir-fried veggies?

Maybe other foods that would have the same "powers" in this situation as would rice?

Sadly, we think rice wine is out.

Draining

What's this draining Venita and Jim always are talking about?

Best we understand is that a part of healing a wound like V's mastectomy wound is the adhesion of the back side of the skin layer to the underlying tissue (given the mastectomy removed the intervening breast tissue). This wound is like a giant blister in that fluid builds up between the skin layer and the underlying tissue. As the wound heals, the volume of the fluid diminishes and the "seal" occurs.

During surgery, the surgeon inserts one or more drains to draw off the excess fluid and encourage the healing process. V had a drain in for four weeks; the volume of the fluid draw-off barely reduced during that month(~150 ccs--or 2/3 cups--a day). The theory was to pull the drain and "force" the tissue to start reabsorbing the fluid. That is working in part. Every Monday and Thursday V returns to Dr. Boob to have the excess fluid drained off.

How does this draining happen? Dr. Boob cuts a small hole in V's skin below the mast scar. He takes a blunt-ended needle (10 gauge or larger we would guess) and pushes it through the hole and some interior tissue until he gets to the fluid pocket. He then screws on a 60cc syringe and slowly draws up the fluid. Unscrew the syringe, dump the fluid, screw the syringe back on, and repeat until--like a straw in a juice box--all Dr. Boob does is draw air and the tissue pulls taut. Dr. Boob routinely gets 300 ccs--1 1/3 cups.

When might this end? Soon we hope. There's alot of pressure with the fluid build-up, and V doesn't like feeling like a juice box 2x/week.

Side Effects

Here come the side effects. Creeping in, slowing but seriously.

Last night the bone pain started. This is from the Neulasta shot, the $3400 shot to make the bone marrow produce white blood cells. Venita's shoulders, back, ribs, and hips are involved. It's just starting but promising over time to get fairly serious.

Troble swallowing. This is the worst right now. Difficult to eat or drink if things won't go down. Not inappetant; Venita is pretty hungry. Can you imagine not wanting a beer because it hurts too much to drink it? Even toast and ice cream are trouble. One thing that's still going down is the La Creme yogurt. Venita has to have a large glass of water with everything she eats to push it down.

The facial pain has dimished, but temperature swings (chills to hot flashes and back) persist, especially at night. But that might be normal life; it was before BC.

Loss of concentration/lack of energy associated with the various drugs, especially the antidepressants.

V is trying to avoid using the sleeping pills because they knock her out for about 12 hours. However, without them she only gets about 2 hours sleep at a time.

OK, enough whining for now. Welcome to the world of chemotherapy.

Fallout Lottery

Let's have a hair fallout lottery! We hear that most women lose their hair by a few days after the 2nd chemo treatment. V's second chemo is currently scheduled for May 2.

Of course, V plans to shave, but she may likely wait until the day the first "clump" comes out.

So post (or email) your guess for fallout day. We're sure a special treat will be in store for the winner!! First person on a particular day gets that day.

Lottery picks:
May 4--Sheree
May 5--Alice
May 6--Mary M
May 7--Bill P
May 8--Cheri
May 9--Julie
May 10--Heather P
May 11--Steve
May 16--Annie
May 18--Laura

Chemo, Jim's Recovery, and Today's Plans

Chemo

Venita had her first chemo on Tuesday morning, a mixture of Adriamycin and Cytoxan.

First a training session. Because of Jim's litttle spill the other day, Jean Ann, Jim's neighbor, drove V and sat with her through the training. Got info on what was going to happen and how to manage side effects.

V sat in a recliner in the chemo room. IV into the wrist area. (No porta cath, remember, because of V's big veins and Dr. Chemo likes to avoid their side effects.) First an anti-nausea pill and an infusion of an anti-nausea drip. Next a fluid drip and the syringing the red Adriamycin into a port on the IV line. Next the Cytoxan drip. (Venita only thinks this is right the right sequence because she slept through alot of this and Jean Ann, bless her heart, went to a book store and bought a knitting magazine and when she came back had an allergic reaction, she thinks, to the ink in the magazine.) Then a syringe of fluid to "clear" the chemo out of the IV line and vein. These particular chemo drugs can cause necrosis if spilled onto the skin or internal tissue, so the oncology team is very careful with them.

The side effects from the 1st chemo have been minimal. Acid stomach and loose stool, which can be handled with over the counter meds. According to Jim, a period of shaking during sleep and alot of coughing and phlegm during the first night. V got her Neulasta shot from nurse neighbor Mary last evening, which is the medicine to build up her white blood cell count. Not sure we mentioned this, but insurance paid $3,400 for EACH of these shots. Wow!! Neulasta has a potential side effect of bone pain. V did wake during the night in a bit of a sweat, but that could be the lymph node infection, the chemo, the Neulasta, plain old peri-menopause, or just a warm room.

V will have chemo again in two weeks, subject to "clearance" from Dr. Chemo.

Very good guidance from Robin about chemo on the FDMB here.

Jim's Recovery

Jim's doing better. He says he's 80%. But he does wear himself out when he tries to do too much, so he may be at V's house for maybe a week longer.

Today's Plans

V and neighbor Mary are planning to treat themselves to a pedicure this morning. V's never had one, but why not a treat? After that V sees Dr. Boob, and will have to have another draining of the mastectomy incision. There's likely another 300 ccs in there. Swollen again, but not as sore as before.

Challenges

When might this let up?

Saturday V sat home all day with a very ailing Jim. She had a bridal shower for Liza to cook for/attend, but Dave S. stopped by to pick up/deliver the food. Thanks Dave.

Sunday V went to Ellen and Dick's for Easter dinner. This is an annual thing. Jim couldn't go. Just before dinner, Dr. Boob called V back at her request; ever since the drain was removed, the fluid has built up in there. She rushed to his office and he syringed out 300 ccs of fluid. He still cleared her for chemo tomorrow. .

Ennis to the vet this morning. $326 of office visit/blood tests/urine tests. Scheduled for a dental this Wednesday or next, depending on test results. Vet expects Ennis to be tootherless or nearly so after the dental; lots of broken teeth. V took a Xanax to make sure she could get through the vet visit. Earlier plans were for Jim to go with her and carry this (today) 17 lb cat.

Jim to his GP in about 45 minutes.

First chemo tomorrow. Jim won't be able to go. Jim's neighbor Jean Ann will be dropping off/picking up V. (V says she's a little scared about doing this alone the first time. Maybe she can find someone else to go and sit through the training and chemo with her.)

Jim Fell

Going home yesterday, Jim took a header into the concrete walkway. V didn't get the phone messages from his neighbor/the ER until two hours later.

70 mph on the highway to the ER. They had given Jim a CT scan and a tentanus shot, but they had done nothing else. V started cleaning him up (facial wounds bleed alot), asked for a pillow and a gown, asked to talk with the DR. About 30 minutes later this very nice, very young man comes in--Dr. Moen. V explained Jim's minor bout with a stomach virus and with dizziness this week, and the DR deduced that Jim must be dehydrated. (Maybe, maybe not; Jim's BP in the ER later was 102/56. Jim usually gets something like 160/95 in the DR office. Something not right here.)

Thank God, no facial fractures, no stiches.

V also asked the DR to chat with Jim about his stress over her cancer. The DR explained to Jim that because he has to be strong for V, he has to talk with his GP about the stress.

V called Jim's GP before she saw the ER DR. That GP and V do not get along; until last summer he was V's GP. GP basically blew V off (he's out of town on holiday, Jim's in a medical facility, nothing he could add, yada yada).

Jim's at V's house now, and not allowed off the couch or out of bed without assistance. "What's the rule?" "I don't move."

Jean, one of Jim's neighbors, has offered to drive us to V's first chemo on Tuesday. No way V will let Jim drive, and she's not sure whether she will be able to. Bless the kindness of friends and neighbors. Bless you all!!

The Week Ends

Appointments yesterday (Thursday) with Dr. Cutter and Dr. Boob. No decision making or news so Venita went alone. Dr. Cutter asked about our decision on a second opinion on Lefty. Venita told her we are going to have her do a mastectomy. Dr. Cutter pulled the remaining drain, and cautioned Venita that because of the continuing large volume of liquid coming from the wound, which may now collect inside the wound, she should be vigilant for signs of infection. Swelling, severe redness, tenderness. What do you know; by mid afternoon Venita had a marble-sized lump in her armpit that Dr. Boob later declared to be an inflamed lymph node, having nothing to do with her cancer. He said it should not change Venita starting chemo on Tuesday. He said the size of the node should reduce as the effects of removing the drain progress.

Both DRs. Want Venita to wait a bit more—2 weeks perhaps—before starting physical therapy. This promises to be very helpful, although very time consuming. Venita will work with one of 2 breast surgery specialists in the area on (1) scar flexibility, (2) range of motion, (3) posture, meaning the humpy shoulders that women get when their chest incision is tight and they are unconsciously “protecting” the area from injury, (4) strength, and (5) cardio-vascular. On the cardio thing, apparently the stronger one’s heart the better they tolerate chemo and sometimes the lower a dose of chemo they require. PT will be one hour 3x/week for 2 months.

Dr Cutter said she may be able to talk Dr. Chemo into allow the left breast mast during the second stage treatment with Taxol. Dr. Cutter said surgery is not necessarily contraindicated with that Taxol. Venita said sure: she’s rather serve all these “sentences” concurrently rather than sequentially. So that might place the other surgery at the end of June, not out at the end of September.

Happy Easter Sunday to those that walk that path. Happy spring Sunday to those who don't. In either case, a psring day often is a reason for something special.

Loving Pets (and Maybe Even People)

Venita found this on the FDMB. It touched her so much, she wanted to copy it here to preserve it:

I am your cat , and I have a little something I'd like to whisper in your ear. I know that you humans lead busy lives. Some have to work, some have children to raise. It always seems like you are running here and there, often much too fast, often never noticing the truly grand things in life. Look down at me now, while you sit there at your computer. See the way my dark brown eyes look at yours? They are slightly cloudy now. That comes with age. The gray hairs are beginning to ring my soft muzzle.

You smile at me; I see love in your eyes. What do you see in mine? Do you see a spirit? A soul inside, who loves you as no other could in the world? A spirit that would forgive all trespasses of prior wrong doing for just a simple moment of your time? That is all I ask. To slow down, if even for a few minutes to be with me. So many times you have been saddened by the words you read on that screen, of other of my kind, passing. Sometimes we die young and oh so quickly, sometimes so suddenly it wrenches your heart out of your throat. Sometimes, we age so slowly before your eyes that you may not even seem to know until the very end, when we look at you with grizzled muzzles and cataract clouded eyes. Still the love is always there, even when we must take that long sleep, to run free in a distant land.

I may not be here tomorrow; I may not be here next week. Someday you will shed the water from your eyes, that humans have when deep grief fills their souls, and you will be angry at yourself that you did not have just "One more day" with me. Because I love you so, your sorrow touches my spirit and grieves me. We have NOW, together. So come, sit down here next to me on the floor, and look deep into my eyes. What do you see? If you look hard and deep enough we will talk, you and I, heart to heart. Come to me not as "alpha" or as "trainer" or even "Mom or Dad," come to me as a living soul and stroke my fur and let us look deep into one another's eyes, and talk.

I may tell you something about the fun of chasing a tennis ball, or I may tell you something profound about myself, or even life in general. You decided to have me in your life because you wanted a soul to share such things with. Someone very different from you, and here I am. I am a dog /cat , but I am alive. I feel emotion, I feel physical senses, and I can revel in the differences of our spirits and souls. I do not think of you as a "Dog /cat on two feet" -- I know what you are. You are human, in all your quirkiness, and I love you still.

Now, come sit with me, on the floor. Enter my world, and let time slow down if only for 15 minutes. Look deep into my eyes, and whisper to my ears. Speak with your heart, with your joy and I will know your true self. We may not have tomorrow, and life is oh so very short.

Thank you Anne B and the Royal Court and her gandmother.

Meet Dr. Nuke/Venita Will be Shooting Herself

Dr. Nuke

Today was our first visit with Dr. Nuke. Another DR we love for his clarity, directness, and empathy. (Why can’t Dr. Cutter borrow some bedside manner from the other three DRs on the cancer team?)

The deal: there are various “standard-of-care markers” for when and where one with breast cancer needs radiation. Venita needs radiation on the chest wall on her right side because the tumor in the right breast was an invasive cancer and over 5 cm. The radiation will continue up to the lymph nodes above her breastbone. She does not need radiation on the nodes in her axial (armpit) area because of the low finding of cancer there.

Dr. Nuke cannot fully evaluate the need for radiation on the left side until he sees the path report from that side's mastectomy. The path on the left breast biopsy didn’t “set off” any standard of care markers for radiation, but the mastectomy pathology might bring new information.

The staggered mastectomies/reconstructions add potential timing complications for administering radiation, but Dr. Nuke agrees with the need to get chemo into Venita ASAP because of the nature/size of her right breast tumor. If a need for left side radiation arises, he will “stagger” the radiation treatments.

The right side will get 28 treatments. That calculates to 5 days/week for about 6 weeks. It will of course be longer than that if the left side is involved on a staggered basis. Each treatment is about 15 minutes. There is an hour+-long, up-front evaluation session where they decide through CT scan where and how to nuke you.

We talked about possible side effects/complications of radiation. Of course we knew about the temporary “sunburns” in the irradiated tissue, and he mentioned fatigue. Dr. Nuke mentioned a few other things, said they were unlikely, so we didn’t even write them down (although Venita does remember permanent damage to the lung). Dr. Nuke said there is the possibility of some temporary arm swelling; as well as permanent arm swelling (something called arm edema), but said that arm edema with Venita was again unlikely. (We are completely unsure how related this arm edema is to lymphedema, but Dr. Nuke said it was something different!)

Dr. Nuke said long-term he expected Venita would unaffected by the radiation and should be back to normal within about a month after that treatment ends. Like Dr. Chemo (bless his heart), Dr. Nuke said he is talking about curing this cancer. Some stats he gave: without radiation—possibility of recurrence of breast cancer in the right chest wall ~40%. With radiation—7–10%. Venita’s odds of being a BC survivor—a little over 80%.

Dr. Nuke said Venita’s cancer presents itself as if it is genetically based (type, size, bilateral were factors he mentioned). However without family history, he is saying it is not genetic. The problem is Venita does not have real good history about breast cancer in her family, but we’ve talked about that before.

Dr. Nuke wants to start Venita on radiation therapy as soon as she is healed from the left breast mastectomy.

Dr. Nuke made a few accountant jokes--LIFO, FIFO, balance sheet, cash flow statement. Forgive him, he was trying to connect and we softly chuckled. He did also tell us a stupid DR joke. Wonder how many times he's told that joke.

Venita Shooting Herself

Mentioned yesterday that Venita was going to need a shot of Nulasta the day after each chemo treatment. Found out today (YEAHHHHH) that insurance allows her to get a scrip and shoot herself in the comfort of her own home.

OK, well there's shooting insulin into your cat and there's shooting yourself. Venita is thinking about having her nurse neighbor watch her practice shoot with sterile saline, just as the vet tech did did when V learned to shoot Max with insulin. The Nulasta comes preloaded in syringes. Venita hopes the syringes are short needles, small gauge!

Start Chemo Next Week!

Yesterday, Venita saw Dr. Boob. He says she is healing nicely from her right breast mastectomy re-incision, but the wound is still draining and leaking too much (over 100 ml/day). He said he would pull the drain on Thursday, regardless of the remaining draining/leakage, because sometimes the drain keeps the wound “weeping" and does not allow it to heal. He also took the stitches out where Dr. Cutter made the left breast biopsy incision.

Today, Venita saw Dr. Chemo. He cleared her to start the Adriamycin/Cytoxan course of chemo next week, provided the drain is gone. She met the nurses in the chemo room (not as depressing as it looks from a distance), and got scrips for blood tests before each treatment and three different nausea medications. She will have to get a shot of Nulasta the day after each treatment to deal with the low white blood cell count that will result from the chemo. She is hoping that she can give herself the shots, or her nearby GP can give the shots, thus avoiding the need to drive 40 minutes each way for a 10 minute visit.

Venita wants to comment again how absolutely positive the chemo group is. Maybe that is a "law" for chemo practices: always be upbeat and never bum out the terminal or those who are completely freaked out by the disease. Venita had the chance to apologize to two of the three center staff involved in Friday's little "postal" (see this post). The one Venita really chewed on, Jewel, did not come out to greet Venita. What a surprise! Venita will have to apologize to her again. Can't be pissing off the ones sticking chemo in your arm.

Three more doctors this week: 1st visit with Dr. Nuke; follow-up with Dr. Cutter; and drain pull with Dr. Boob. No appointments on Friday (yeah; might get some work done). Oh no, Venita is making an awesome salad for a wedding shower on Saturday and an Easter Sunday dinner, so it's off to the grocery on Friday morning and massive cabbage chopping on Friday afternoon.

Ennis, Max's brother goes to the vet on Monday for blood tests, blood pressure check, general exam, and OK for a dental. Man does his breath stink. We're wondering how many extractions this is going to be!! Every day is a new adventure.

Just Another Manic Friday

It's been a BC-quiet week; Venita's been trying to get some work-work done. Thought she was getting better after the surgery; she went to the grocery and cooked on Thursday--the first time since before her mastectomy. However, V went postal on a nurse this afternoon.

She had a phone message when she got in this afternoon at 2:30 (timed at 1:45) saying there was a problem with her Tuesday appointment with Dr. Chemo and to call back by 2. V called right back and Jewel (another nurse) said she doesn't have a clue what it's about and to return the call to Tony on Monday. Damn we hate that "last call of the day" stuff, the HIPPA stuff that won't let them leave a detailed message, and no offer to return the call (their time is so precious). V did call back to apologize to Jewel for the abuse.

V sent Jim home today. He's stayed with her every night except maybe four since her first biopsy. But V's been feeling more up to taking care of the cats and her meals, and not so concerned about drug reactions, so Jim is back to his own home. Lots of things there have not been getting done, and he's been feeling the stress of being away from the comforts of home (including being able to yell at the TV when the Phillies play like the Phillies). (A little baseball humor; new season, same Phillies.)

BC-related activity will gear back up next week, with visits to Dr. Chemo (hopefully we'll hear that V is post-surgically ready to start chemo), Dr. Nuke (the first consultation to find out what that's all about), and hopefully Dr. Boob to remove the last drain (although the thing is still draining over 100 ML/day when it needs to be down to less than 25 ML/day for the drain to be removed). V feels like the pain/discomfort from the expander/insert is NEVER going away. If the permanent implant is this uncomfortable, well, hummmmm, it's going to be out of here!

Insurance Woes/Doctor Visits/Other Things

Hate medical providers who screw up insurance claims, or insurance claims that we don’t expect because almost each “person” who touches Venita in a surgical setting sends a separate billing. SIGH. Takes Venita at least a half-hour a day to clear these up. About ¼ are wrong, and of course they all need to be “tracked.” Jim is the “sponsor” for Venita’s insurance; providers have to file under Jim’s social security number. Some file under Venita’s social or under some completely unrelated number. Sometimes providers submit duplicate charges or don’t put in the correct diagnosis code so they get paid nothing, when they should get paid something.

Venita saw Dr. Primary today. Venita’s main complaint was that all the medications were making her so groggy that she is sleeping up to 20 hours/day. Dr. Primary is moving the Paxil (long-term treatment for panic attacks) from AM to PM (when Venita would otherwise be sleeping) and asks that Venita minimize the Xanax (short-term treatment for anxiety) to times when it is absolutely necessary. Venita sees Dr. Primary again in 6 weeks. She is really helping Venita through this, and seems to truly understand the trauma.

Dr. Primary recommended against a change in breast surgeons. She agrees (as do all the Drs.) that Dr. Cutter has lousy bedside manner, but that Dr. Cutter is the most advanced breast surgeon in the area. We've agreed to stick with Dr. Cutter.

Venita and Jim also saw Dr. Boob today. Dr. Boob did the re-surgery on Venita’s mast scar 5 days ago. He said the new scar looks good, even though there is a small amount of dark scabby tissue forming again. Dr. Boob said that because the scab is near the breastbone, it is in a location where the skin is thicker and thus he will be better able to deal with a “weak area” when he goes to add saline to the expander implant. He took one of the 2 drains out today. (OH! What a squirmy feeling that was.) Dr. Boob says he thinks the other drain may come out in 2-7 days. Starting saline into the expander implant in about 3 weeks, once the scar is completely healed. Venita still has pain where the corners of the expander are. Dr. Boob says that should minimize as he fills the expander. Dr. Boob has not yet researched the effect of Venita’s intercostal neuritis on her left breast reconstruction.

Last night, darlin Ellen sent Dick over with Cornish game hen, rice, green beans, and bread pudding for dinner. Venita was laying on her side in bed eating, and she was scarfing it up! She loves Ellen’s food. Thank you so much Ellen and Dick.

Can’t think of anything else new to say. Can think of something old to say—thank you all so much for caring for and for supporting us!