So Tired (by V)

This will be cryptic and brief.

Jim was a little less coherent today. In my absence, Jim says the GI DR told him his liver values were better and he might be able to come home Friday. Confirmed the liver values comment through the chart. Nothing in DR notes about coming home.

Jim walked 30 foot 2X at physical therapy. At occupational therapy, he took off and put on his shoes and socks before I had to leave for a pulmonary function test at the southside hospital. This is a followup to the whole lung cancer scare/continuing possibility.

I met Jim in the ambulance bay at the southside hospital for his pericentesis. They drew off 700 ccs. Not sure I understand the whole "we can't do this [relatively easy] procedure at the northside hospital." Well, the amubulance company will be getting maybe $800 for the transport.

Between my test and Jim's I had 1 1/2 hours. It was the most relaxing time I've had all week. I talked and laughed with the ladies in the X-Ray area that were going to do Jim's procedure; I had a quiet and filling lunch in the employee's cafeteria, which I just found today; and I browsed through the gift shop, and found a really nifty small lamp that looks like a tree in winter with a bird's nest in one branch.

Back to the northside hospital, and the wife (Bettey) of one of Jim's childhood friends (Goldie), came into visit for a few minutes. These folks now live in FL, but B was coming through town to visit family.

B showed up in the room with flowers. Jim didn't recognize her and told her she must have the wrong room. Thank you Goldie for the flowers; they are beautiful!! B listened to me and Jim kabbitz about his condition for a while. I couldn't understand why she sat there without adding much to the conversation.

OK I know I said this would be brief, but I have to tell you my favorite story about Bettey. She is Jewish; big time Jewish. But when she was young, in high school, I'm not sure what year, she was elected by the other members of the CYO (Christian Youth Organization) as its annual president (or whatever they called the position). Well, once the sponsoring priest figured out she was Jewish, he explained how she couldn't be the president (or even be in the organization) because she wasn't a Christian. I don't recall how it all worked out, but the point of my story is that Bettey is a member of the community, without regard to whatever cookie cutter she or someone else came out of. That is the part I admire the most about her.

Bettey and I walked out to the elevators when she had to leave. I then understood why she had been so quiet. She had never seen Jim so frail and sick, and that scared her. I guess I've grown somewhat used to it. B also seemed to understand where Jim and I am with regard to trying to get through this. A day at a time. Thank you, Bettey, for that.

I'm starting to grow my head hair!! I noticed it last week, and Jim noticed it on Sunday. It's not possible to say yet what color and consistency it will come back as. But many have told us we should expect something different. I used to be absolutely straight and fine, medium brown, but recently more gray than brown.

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.