Home from the Hospital

As Julie reported on the FDMB and Steve copied here, we had FABULOUS news from the mastectomy procedure--3 sentinel lymph nodes were taken and the OR-based frozen sections showed them clear of breast cancer and thus no other axillary lumphy nodes had to be taken. (See the glossary of terms and acronyms for definitions of sentinel and axillary nodes.

What does that mean for Venita? The chance that her breast cancer has spread (metasticized) elsewhere in her body, while not impossible, is unlikely. Something like 10% of breast cancers can get by the sentinel nodes without "setting them off." Therefore, Dr. Chemo still will likely want to be cautious and perform some additional testing, like bone and liver scans, but it also is possible (although perhaps just Venita's wishful thinking) that the previously discussed course of chemotheraphy may be cut back by half.

Despite the absolutely excellent news that had Venita and Jim on cloud 9, Venita did have some trouble in recovery last night. Her one drain was pouring massive amounts of fluid out but still not keeping up. She developed a large and very tender hematoma (bruise) at the top of her right breast tissue, near her collarbone. The surgical resident called our ever-helpful Dr. Cutter at midnight, and she didn't want to come in. Dr. Cutter recommended compression wrapping Venita so tight she "couldn't breath," checking her fluid output every 15 minutes, and unwrapping and checking the hematoma in one hour. (Venita had not been compression wrapped at all.)

Resident also called Dr. Boob, who agreed with that course, but who also said he would come in should Venita need to return to surgery and perhaps afterwards admitted to the hospital for another overnight. Dr. Boob got there at 2 AM, and felt that the compression wrapping had helped reduce the swelling, pain, and fluid output, so he signed the discharge papers for this morning. No discharge papers from Ms. Congeniality Dr. Cutter; this morning she was winging her way to Mexico for vacation. Dr. Boob leaves tomorrow morning for his week-long vacation. Seems there are alot of doctors who have privileges in this hospital taking spring break vacations with their high-school/college aged children.

Venita got very little sleep last night.

Jim brought Venita home around 9 am local time. The neighbor nurse practitioner Mary came over and redid the compression wrapping because the ice bag had melted, broken open, and soaked the dressing. What an ugly mess the wound is with the loose skin, big incision, blue sentinel node dye, and black/blue/purple hematoma(big bruise in the armpit too)! Mary read Venita and Jim the riot act about Venita lifting anything heavier than her lap throw. Venita is to ask for help for all things physical and Jim is to provide that help. This is to go on for at least several days. Venita may feel up to doing more physically strenuous activity, but she IS NOT to do it because it will set back her recovery. She is not presently aware of the pain because she has a "medicine ball" that is slowly feeding lidocaine into her incision, and as soon as that is finished in a couple of days, she will be simply amazed at the pain she will be having.

BTW, big hospital screw-up the morning of the surgery. Venita and Jim were to be at the hospital at 10 am for 12 noon surgery. They got a call at 5:45 am asking where they were for their 5:30 am check-in for the 7:30 am sentinel node dye injection. Venita screamed through a bath (no shower given the biopsy two days before) and hauled ass down to the hospital in her own car; Jim to follow later after he had taken care of the cats and house. The surgery staff checked Venita in and she sat there in check-in holding until 8:30 and finally asked when she was going down to nuclear for the dye injection. She was told that the schedule had been messed up, there was no 7:30 appointment, and that Dr. Cutter would inject the dye in the OR at the 12 noon surgery. Venita went back home. Thank God for Paxil and Xanax or someone besides Venita and Jim, who were trying to sleep in in advance of a very long and tiring day, would have been pretty bummed out that morning after Venita chewed hir up and spit hir back out.

Another BTW, Venita's still trying to figure out what to do with not smoking cigarettes. Dr. Boob wanted 2 weeks pre-surgery without smoking to improve circulation and the surgical outcome. Venita gave him one week. Now, she's trying to decide what to do given that surgery is over and she still wants to smoke. She is thinking about "giving" Dr. Boob 2 weeks of smoke-free post-surgical healing time, even though he has not specifically asked for it.

Venita doesn't really want to quit smoking (sorry Martha and Robin, her two designated smoking woman-handlers), but does believe that setting a series of short term goals like one week pre-surgery and two weeks post-surgery might get her smoke free, whereas a long-term goal like no more cigarettes ever for the rest of her very long life isn't going to give her an attainable goal.

Venita's good news from recovery!

Julie reports:

I had to go out so I left my cell phone number with Jim..he called and said everything went great!

here is the medical stuff he said...

• sentinel node biopsy -removed 3 nodes-all negative on initial testing!
  
• no axillary node dissection..not sure what that meant but it was good news..
  

I was in a grocery store on a staticy phone..they also said that

• the left breast appears negative as well!
  

of course everything is pending pathology reports which won't be back unitl the 27th..but it appears to be a miracle!

He said Venita wanted me to call her at the hospital so I did..she sounded amazing! you would have never known she had just been through surgery..her exact words "I've got my life back"..shge is already planning what she is going to do in her garden...she is in a 4 bed suite at the hospital all by herself..she said she has her stuff everywhere and it is great..they are a bit worried about the excess drainange she is experiencing and may need to have the surgeon look at it if it doesn't slow down..but she will be going home tomorrow...that is all I know..so no questions ok! Our prayers reeally worked! I am guessing we may even see a post from her tomorrow..I am going to call her tomorrow afternoon so I will post again after that..

Julie

Goodbye Righty!

Today's the day we say goodbye to Righty. It's easy, and it's hard, to say goodbye.

Easy to say goodbye, hoping that with that tissue goes the cancer and the fear that this disease will cut short the time Venita and Jim will have together. It's already diminished the quality of their time together, having brought many moments of terror in the past 3 1/2 months. But it also has improved their relationship, as they work together to step through this treatment process.

Hard to sy goodbye, not that Venita or Jim have ever defined Venita by her sexual body parts, but once you've got any "normal and customary" body part, it's had to see it go. Won't the loss of any body part put the whole balance of the body out of whack?

Complications aside, twelve hours from now Venita should be out of surgery. Today's gift would be a finding of minimal lymph node involvement. We have little expectation of that outcome, but we can always hope/wish/concentrate on/pray for that miracle.

Home from Lefty's Biopsy

Home again, and so happy to be.

Yesterday was the MRI wire guided excisional biopsy on Lefty.

The two-stage procedure was done in the adjacent imaging and ambulatory surgery centers of the huge Christiana Care campus. Starting in the surgery center, an anesthesiologist put in an IV line to provide access for the radioactive "stuff" for the MRI and for the surgical anesthesia.

Next a trip down "Patient Way" to the Imaging Center. On the MRI table on her belly, left arm outstretched ala Superman, boobs hanging through a board with two round holes, Venita was in and out of the MRI machine for about 90 minutes. Really nice tech Sarah, and a really funny radiologist, Dr. B. (Why is it of the specialists, radiologists tend to have a human side?)

Took some films to compare to the MRI films from last month. Didn't have a mammo plate clamped on as Venita had previously been told (whew), but there was some sort of minor "compression" device. Dr. B got a feel for the location of what he called the "lesion," and started giving Venita shots of lidocaine into Lefty. Remember, Venita can't see any of this; she's face down in the superman pose. Dr. B was a hoot; he would place the tip of the syringe against Lefty and say "one, two, three," and push the needle into the tissue while saying "ouch." Each time he pushed the syringe plunger, he would say "ouch." Venita asked what he was doing, he said "Saving you the trouble of letting me know it hurts."

(Venita: "What do you mean by lesion? Dr. B: "The tissue of interest. The tissue that looks different from the surrounding tisse and that we want the breast surgeon to biopsy for pathology.")

After 3 shots and a few minutes for the lidocaine to "work," Dr. B started to place the wire, which was a 20 gauge biopsy needle. He had a hard time penetrating the skin--said Venita was "thick-skinned." As soon as he made it through the skin, Venita gave a big OOOUUUCCCHHH!!, and Dr. pulled back and said that Venita must need more lidocaine. "One, two, three," and pushed in the needle and plunger but didn't say ouch. Venita asked why he didn't and he said because that one didn't hurt. Venita assured him that it did. "Oh," he said, feeling bad that he had failed to supply all the requisite sound effects.

It took unusually long for the needle to get appropriately placed. Between Venita's thick skin and the fact the lesion was at the chest wall, it took maybe 8 separate insertions/adjustments to get the needle where Dr. B wanted it. While Venita waited for films to be printed for Dr. Cutter, Sarah brought Jim back to see Venita and to see the MRI machine.

Back into the wheelchair and a return trip up Patient Way to the Surgery Center. A short wait in the "back" waiting room, and then directly into the OR; no separate "pre-op holding."

Nurses and techs get Venita all strapped, and draped, and hooked up to monitors and IV bags. . . .

Dr. Cutter walks into the the room and says hello to Venita, Venita asks how Dr. Cutter is going to get to this lesion given it's at the chest wall, Dr. Cutter gives Venita that "how dare you question my skills" look as she sarcastically says "with a knife" . . . .

Dr. Cutter looks up at the anesthesiology nurse, and the next thing Venita knows she is being woken and asked to get off the table and into a wheelchair.

Coming out of the sedation was a little harder this time. Venita had teeth-chattering shivering. A nurse brought Jim back to the recovery area. After a blood pressure reading with a "normal" diastolic pressure, Venita was allowed to dress and leave.

No post-procedure visit from Dr. Cutter to either Venita or Jim. (Jim didn't see her pre-procedure either.) Dr. Cutter just disappeared. No pain meds sent home with us. Discharge nurse also seemed surprised by this "cut and run" behavior. Venita's using the Percocet she has on hand.

No big ace bandage this time. Just a gauze dressing and sports bra over the steri-strips. All of the breast tissue in Lefty is sore, from the breastbone over to the armpit. A much deeper, widespread pain than with the biopsy on Righty, where the tumor was right at the nipple. From what we could tell changing the gauze dressing this morning, Venita will have quite a dent in Lefty.

Finger and toes crossed for good news from the pathology report.

Venita plans to spend the day resting as much as possible. The mastectomy/reconstruction on Righty is tomorrow. Sigh.

Drugs!

Today, Venita saw her family doctor, let’s call her Dr. Primary. Venita doesn’t know this Dr. well, having changed family doctors right before this whole thing blew up.

Dr. Primary said she was happy Venita had come to see her. Dr’s been copied on the path reports, and said she was planning to hunt Venita down this week, but in person is so much better than on the phone. Dr. Primary considers herself part of this cancer care team. Dr. Primary sees her role not only as family doctor for non-cancer-related problems, but also as the Dr. responsible for helping Venita hold her self sane and healthy as she goes through this ordeal.

Hallelujah! Venita finally found the Dr. who sees that as hir role!!

Dr. Primary asked all the right questions—about sleep, how often, how long; about eating; about anxiety, panic attacks, fearfulness, focus, stomach cramping, diarrhea. Dr. Primary was batting 1000. She said that people in Venita’ situation start to become unraveled and that she would help hold her together, even when it takes coordination with the cancer doctors. She wants to see Venita every 3 weeks for awhile, just to check up on her.

So now Venita has:

For depression and panic attacks: Paxil CR, 1x/day. starting at 12.5mg for one week, increasing to 25mg after that.

For anxiety: Xanax generic, .25mg, PRN, up to 3x/day.

For sleep: Ambien 5 or 10mg at bedtime.

Venita still has to read the drug info sheets that she received with the scrips. She knows that many of you have used these drugs before, and have explained your experiences, but please share again, even if you want to do that sharing privately in PM or Email to Venita.

Venita is confused about having Xanax for anxiety and Paxil for panic attacks. She always thought those two conditions were the same, but Dr. Primary clearly saw them as different. Any thought on that?

Venita also wants to know about addiction to these drugs and whether that is going to pose a problem. The way Dr. Primary was talking, Venita might need “a little help” all the way through chemo and radiation treatment, which means through year-end.

Tomorrow—Venita rescheduled her dental cleaning back to this busy time. She recently read that dental work during chemo is difficult because of the compromised immune system. Her body might have trouble with the “shower” of bacteria from a cleaning, and any open sores from procedures could be very slow or difficult to heal. The dentist’s office was very accommodating.

The Last Couple Days

Venita hasn’t been away from the house the last couple days because despite being on Xanax, her anxiety is physically overwhelming. Things like being doubled over with shooting pains in her stomach. It surprised her when it started Thursday night because she thought she had resolved her emotional anxiety by speaking to the OR RN supervisor earlier in the week. Something of a mind/body disconnect.

Her eating is lousy. Her green tea drinking is good (thanks Cindy).

Today Venita figured that the only way to get her mind off her problems, without going too far away from the house, was to do the spring cleanup of the yard. One of Delaware’s native hardwood trees is the Sweet Gum. Their seedpods are unaffectionately known as “monkey balls.” Those pods are unpleasant yard trash, like golf balls with iron spikes. Can’t believe the Internet site linked above suggests germinating these trash trees.

Each mature tree must produce 3 thousand seedpods, and they come down all year, although principally in the winter months. Therefore, not only do we have a big fall cleanup for the leaves, we also have a big spring cleanup for the monkey balls.

So Venita headed out, rake and trash can in hand, about 10 this morning. Around 12, Venita’s neighbor Nancy came over and said she would be over later to help, but that she couldn’t work in the sun. She said another neighbor Mary would come too. By mid afternoon there were 4 women (neighbor Lynn pitched in too) and Mary’s stepson all raking and hauling monkey balls up the hill. They finished well before dark, but pretty exhausted, with just a couple hours cleanup left for Venita for tomorrow.

Dr. Boob wanted Venita off cigarettes at least 2 weeks pre-mast to improve her circulation for the reconstructive surgery. Two weeks wasn’t going to happen with everything else, but Venita last smoked 24 hours ago, giving her a good chance of giving Dr. Boob half of what he wanted. Venita keeps having these “what is it I was looking for?” moments, and realizes that it’s a subconscious urge. Good thing there are no cigarettes in the house and Venita hasn’t felt well enough to drive out to get some. And no, this is not intended as an attempt to stop smoking; Venita’s just trying to get through the surgery with as many good outcomes as possible. If it turns into something more, that’s great, but that’s not her objective.

To Pack/To Do lists

We are so anal. Please let us know what we may be forgetting.

To pack for the overnight hospital stay (don’t want to take too much)

• Jammies (button front and loose)
  
• Socks (won’t need; they give you those non-skid socks)
  
• Slippers with non-skid soles
  
• Toothbrush and paste
  
• Comb
  
• Radio Walkman with headphones (Venita listens to NPR)
  
• Kleenex
  
• Book
  
• Glasses wipes
  
• Hand wipes
  
• Clothes to wear home, including sports bra to hold the chest dressing
  
• Safety pins and shoestrings to support the drains
  
• Sarna lotion (we understand morphine makes one itch)
  
• Passwords in case Venita can get onto the Internet

To do before surgeries. We are especially trying to think of things that Jim will have to do for Venita because she will be on the floor of the house with her bedroom, bathroom, and office. She may not have access to the kitchen (one floor below) or the litter boxes or laundry (two floors below) for some time. Some of these things may seem unnecessary, but remember that Jim doesn’t live with Venita.

Teach Jim:

• The cat feeding and pilling routines (thank God Max is off insulin)
  
• How to clean litter boxes and cat puke
  
• How to operate the microwave, coffee maker, garbage disposal, clothes washer and dryer, thermostat
  
• Where food stuffs, pots, utensils, toaster, and tea kettle are
  
• Where water shut offs and electric box are
  
• How to fill the humidifier

Stock into the house:

• Food, especially bland food (like yogurt, cottage cheese, soup) and clear liquids.
  
• Litter and cat food (done)
  
• Button up shirts and loose fitting pants
  
• Household supplies, like laundry detergent

Stock into Venita’s bed and bathrooms:

• Magazines and books
  
• Extra pillows, towels, washcloths, paper towels, toilet paper, and toiletries
  
• Thank you cards, stamps, pen, and note paper
  
• A large trash can and folders so that Venita can sort the mail as it comes in
  
• A phone and phone book
  
• A list of frequently called phone numbers
  
• A portable TV and a radio
  
• Max’s BG testing equipment
  
• Venita’s medicines and the pill splitter
  
• Venita’s appointment book
  
• Cat food and plates in case the cats want nighttime feedings
  
• Some sort of signaling device to get Jim’s attention if he’s not hearing Venita call, maybe one of those bicycle air horns (we don’t have walkie talkies or cell phones)

Other:

• Take Jim to the grocery store so he knows where Venita’s favorite things are
  
• Put Venita’s medicines in individual baggies and label each as to name, purpose, and dosage (split pills that she sometimes takes in half doses)
  
• Arrange for a friend to come in to feed the cats when we will be away from the house for more than 6 hours
  
• Pay all bills that will come due within 3 weeks of surgery
  
• Put a phone into the room where Jim will spend most of his time
  
• Put the phone on maximum number of rings before it rolls to voicemail
  
• Designate a contact person who Jim can call to update and who can in turn update FDMB friends on the Community Board during the time Venita can’t get into the Internet
  
• Disable comment moderation on the Blog
  
• Ask Steve to repost the FDMB update onto the Blog

Today's Brightest Spot

Been some real high spots and some real low spots today. Jim said to Venita: “Try not to be so negative on the Blog,” referring to Venita’s ranting about “it really sucks” two posts down. Venita popped another Xanax and is writing this as she tries to get her blood pressure under control from today’s round of stupid doctors’ offices tricks.

Today’s brightest spot was a post card from Martha from Hawaii. When’s that wonderful woman getting home to her Alley Cat? We so hope she had a warm, relaxing vacation away from the world of FD.

Is “vacation” a derivative of the words “vacant” or “vacate”? Must be. We hope Martha vacated all her worries back here on the mainland while she was gone.

PS: From Amy--"vacation comes from vacate, which comes from the Latin vacare, which means to be empty, free, etc." Thanks Amy!

Today is Better

Venita had 2 Xanax yesterday afternoon and evening and got about 5 hours of sleep. She got her hair cut really, really short, to ease into the bald look, and found 6 cases of Fancy Feast in our “flavors” so she won’t have to go to the pet food store for at least 3 weeks.

Venita put in a call last night to a daughter of a friend. The daughter, Libby, is a case manager nurse in the joint unit of the hospital where Venita will have her mast/reconstruction. Libby previously had offered to help anyway she could. Today Libby had Mary Ann call Venita. MA is the nurse supervisor of the hospital’s surgical intake/pre-op/recovery areas. MA answered all sorts of questions about the process and promised to keep a special watch out for Jim and Venita. MA said that depending on the nature and type of case load, she might be able to get Jim into pre-op and recovery to sit with Venita. MA promised that Venita would be able to have her eyeglasses in pre-op and recovery.

Venita won’t be put into a hospital room on a floor with the “general” patient population. She will be in a surgical observation area with 4 beds: more sterile environment and a richer nurse/patient ratio. Venita will be getting visits from both surgeons the next day so they can talk with her about the procedures, do exams, and evaluate her ability to go home.

Venita was told she could bring her own jammies and toiletries, but anything she might not bring and needs would be provided. (We don’t think that includes beer.) If she cares for it, Venita will get a head set so she can listen to “relaxation” music. She was instructed about the types of clothes to bring to go home in.

Venita was told when and in what format she will be getting pre-op and post-op care instructions.

That conversation and another Xanax this afternoon have made Venita feel less panicked.

It Really Sucks (by Venita)

It really sucks that:

I did everything I was told to protect myself from advanced breast cancer.

I went to the GYN/mammo/US as soon as I found the mass, and I was sent home with “come see us again in 4 months.”

My cats know I’m not well so they want to get in my face 24/7. (It's not all food love.)

I have 10 more days to go before the mast, and 10 days after that before I get the path results.

There’s a good chance that my prime client contract of the past 8 years is going to cut me loose because I can’t meet the schedule for their spring products. (This when I have recently turned down 2 other offers of work because I wanted to focus on their needs.)

Gasoline prices are so high and I have to travel 40 minutes each way to DR appointments, surgeries, and procedures.

Maxie was DX with diabetes last summer and I put such energy into getting him better and I now have few reserves left for myself.

My right ankle is swollen and I’m starting to freak that my right axillary lymph nodes are not working.

I am having panic and anxiety attacks--not sleeping, not eating, and having stomach pains and all the tail end stuff that comes with that--and it took Dr. Cutter over 24 hours to phone in a scrip.

I broke down crying in public this afternoon when I was out with Jim.

I still am crying as I write this, even though I always try to be so positive here.

~V

Planning a Fund Raiser

This whole head shaving thing is starting to obsess us. We've been talking to people and here's what we are thinking. This would be set up as a fund raiser for a local breast cancer group, probably the Delaware Breast Cancer Coalition.

At our local bar.

A mid-day party, on a Sunday for maybe 4 hours, with a DJ with sound equipment so that the "events" can be announced. We know 2 DJs and likely can talk at least one of them into donating his time.

A chili "cook-off." We've done these for fund raisers at this bar before. Different folks make their own chili recipe, and people pay $X to taste test a small amount of each one and then "vote" for their favorite by getting a full bowl of it. We've got maybe 6 people set up to make chili so far.

A head shaving "auction." Recruit different people to get their heads shaved if their "price" is met. We would set up containers to take donations for each person, so that a single person wouldn't have to pay the full price. Kind of like those "best legs" contests you may have seen. Venita would get shaved first--without any donations required of course--but as the day went on, the others would fall like dominos as their "price" was met. We already have 2 men who have volunteered to be shaved (even without donations) but we hope to get others involved. The bar manager says she will get her daughter, who is a beautician, to donate her time for the shaving.

Of course the standard "50/50." Buy a ticket for $X for the chance to get 1/2 the pot. The rest goes to the charity.

Anyone want to help us design the flyer for this?

Favorite Things

Alice asked Venita to blog her favorite things.

Besides of course her husband Jim; her four cats, Maxwell, Ennis, Bailey, and Lily; and her brother Les, Venita’s favorite things are:

The color red
Being organized
Working in the yard, including planting and tending her perennial and herb gardens
Pulled pork sandwiches
Vegetables with every meal (potatoes are not vegetables)
Hardware and kitchen gadget stores
National Public Radio
Being warm
Napping in the middle of a sunny summer day
People who help out other people on the FDMB
People who say things that make me laugh out loud (Thanks Ken)

Ups and Downs Each Day

Today’s Ups for Venita:

Steve confirmed that Venita is a smart ass after he asked her whether she had an address and she came back with a really brassy answer:

This reminds me of the time I was sitting in a bar, and my husband was out in the bathroom, and some really ugly drunk man came up to me and asked: Got a name? Smart ass I can be, I responded: Yes, doesn’t everyone?

Venita got flowers from the PICPA. She’s been doing some minor pro bono work for the PICPA's quarterly journal for a few years and had to beg off for awhile. How very sweet of the Journal's editor, Bill.

Venita got an invitation to go to the luncheon at the state's annual breast cancer conference from a professional colleague who audits the organization that puts on the conference. Jim and Venita are already signed up for the conference, but because it is only a few days after Venita's mastectomy, they don't know whether they can make it as it is. Thank you Pam for reaching out.

Venita got cards from Robin, Ellen, and Mary F. Thank you ladies.

Venita and Jim talked about having a head shaving party to get over Venita's concerns about people staring at and whispering about her upcoming baldness. It would be down at our local bar, involve homemade chili, and allow all to show support (including those who want to be shaved as "companions").

Today’s Downs for Venita:

Venita got in touch with a fellow to mow her yard this year. She didn't want to, but she has to be realistic. He's coming by on Monday to chat.

Venita "came out" to two friends (a married couple) about her cancer. The scrunched up, arm huging, turned away body language, and the lack of questions hurt Venita. She felt like a leper. They seemed to be saying: "Just go away already!!"


Far more ups than downs today, so that's good!!

Getting Bald (by Venita)

This is Venita only speaking here. I know with chemo there is a 90%+ possibility I will lose the hair on my head. I was planning to be proactive and just shave it in advance, and not wear one those do-rags or floppy hats you see on people undergoing chemo. Just be bald and proud.

In fact, I’ve always been a little curious about the whole shaving head thing that men do these days as a fashion statement.

But I’m kind of moon walking on this now. Jim and I have tickets to go to a dinner theater a couple weeks after I would have my head shaved. I’m thinking how shocked the folks in the room would be—-the whole, “OMG is this infectious?” or “Look at that woman, she is dying” thing.

I know I won’t be infectious or dying. And I know the do-rag/floppy hat only minimizes the effect on other people, it does not change the facts of what they see and feel.

I do not at all mind the people I see everyday seeing me bald. A few (men) have offered to shave the same time I do. (No women takers yet.) I am a little queasy about my first few trips to the grocery, discount store. . .... The overly long looks; the quiet whispers.

Your thoughts about my new feelings? Don’t even suggest the wig thing!

Why Radiation Therapy?

We've had some ask why Venita needs radiation therapy if the surgeon is removing her breast. We didn't know because we have yet to have the first consult with Dr. Nuke. But we think we have put together a reasonable answer.

Even though the breast is removed, the surgeon can't remove 100% of the breast tissue from the chest wall and the skin. So radiation will "target" those remaining cells. Also, because there is a high likelihood of axillary (underarm) lymph node involvement, there likely will be radiation to that area as well.

New Dates!!

In the midst of all this, we love good news.

Left breast biopsy March 15 (outpatient). Two days later, March 17, right breast mastectomy, node work (sentinel or dissection, depending on how it looks under OR-based frozen section), and reconstruction (inpatient, 1 day hopefully).

If the LB biopsy shows cancer, Venita might have to head back into general anesthesia surgery for another mastectomy and reconstruction, but we aren’t going to think that way, are we? We’re going to all chant—Go Lefty, Go Lefty! Oops! Stay Lefty, Stay Lefty!

And this shows some confidence from Dr. Cutter that she’s not going to find cancer in Lefty, doesn’t it? Otherwise, she would have delayed between the 2 procedures. Correct?

First post-surgical consult with Dr. Chemo on March 28. Scheduling assistant Venita spoke to (so nice) said Venita may start chemo the next day, in advance of getting the surgically implanted porta-cath. Venita’s sure her veins can take some measure of pricks, up to a point. (You may not remember, but the surgeon wants to implant the porta-cath separately so that there is no cross infection from the surgeries.) We’ve read that chemo can “collapse” the veins.

Still-to-be-identified Dr. Nuke’s office (another great scheduling person) tells Venita she doesn’t need to schedule the radiology for several months. More good news—the cancer center’s radiation department has a treatment center just a few miles from Venita. Not the 40 minutes each way ride she has to do for chemo.

Venita just checked today’s date. Is this already Friday? She’s losing her mind here. So surgery begins in 1.5 weeks. She’s psyched!! Get this crap out of her!!

Just to repeat what we have said so many times before. We do so cherish all the support Venita is getting from you all. We hope to be able to pay it forward some time very soon.

Green Tea and a Wheat Bag

Thank you Cindy

For a package with six boxes of green tea. Cindy and Venita had been talking about green tea shortly before Venita had the 1st biopsy. Venita bought green tea at the grocery post-biopsy but was bummed out that it was caffeinated. Of her 3 adult vices (caffeine, alcohol, and tobacco), caffeine was the only one Venita had been able to successfully abandon. (Another story for another day about Venita's walk across the Brooklyn Bridge on a Saturday morning in 1984 with her co-worker Ken, head pounding from caffeine withdrawal.)

Cindy's card, which is a wonderful sepia-toned picture of a pretty serious looking cat glaring through a wrought iron fence under a sign saying “no dogs allowed,” reads in part:

As I went food shopping the other day, I started looking to see just what was available in a decaf green tee. [This] seems to have turned into a Giant Green Tea Carepack.

Yes it did, Cindy, and Venita does appreciate the “picture” of your hair trim. Venita loves you, darlin, for taking all this time to do the green tea shopping that she hasn't been able to get to.

Thank you Martha, Robin, and Julie, and Gail

For the wheat bag. This is awesome! Venita wrote a couple days ago about how someone could make a cottage industry out of rice pads, and apparently Gail makes wheat bags. Can be heated or frozen. Venita is SOOOO looking forward to trying this out.

In her note Martha said that Gail gifted the wheat bag to Venita and that: “There is love from a total stranger.” Not a surprise to us Martha; there has been so much love from so many total strangers.

For those curious, the website for these wheat bags is here: http://www.wheatbags.com/. Venita has sent an email of thanks to Gail.

Chain Saws

Venita's friend and boss JFA taught her to use a chain saw back in, maybe, 1987. She got a 14" bar Stihl as a gift from a friend who sold and serviced power tools. Venita needed a small bar because she's a small person.

JFA sent Venita home to read the instruction book and to take the chain and bar off and reinstall them so she would know everything she could before the actual cutting lesson.

One Saturday morning, JFA came to Venita's house and they loaded up the wheelbarrow with the saws (JFA brought an extra saw--you need an extra when the saw bar gets wedged in a tree), tools, extra chains, chain oil, fuel container, ear protection, eye protection, gloves, and all that other stuff one needs for the job. They were going to head up the hill to the woods to cut.

But before heading off, JFA asks: "Did you read the instruction book, including the cautions for use on the first page?"
Venita: "Yes."
JFA: "What was the first caution?"
Venita: "Do not operate the saw while under the influence of drugs or alcohol."
JFA: "So you know that rule?"
Venita: "Yes."
JFA: "Good. Now go inside and get us some beers."

Off JFA and Venita went up the hill with the equipment and four beers.

Lesson learned: Life has rules. Life has choices. You can make choices that break the rules as long as you know and understand the reasons for the rules.

We Don't Want to Ever Lose This Thread

Venita annouced on the FDMB a couple days ago about her breast cancer. The support she got there was incredible, and with this link, we will always know our way back to all of those people who let us know how much they care.

Thank you, so much, everyone on FDMB!

Venita Wants to Mow the Lawn this Year

Venita found this story on the Internet recently, written by a woman who is now surviving breast cancer. What an incredible talent this woman has for expressing emotion in her writing. "It pained me to see Mom twist herself into a pretzel trying to please Grandmother, only to be dashed upon the jagged rocks of Grandmother's beachfront." How powerful is that?

This woman's story is very different from Venita's story. Venita has long experience with using power equipment. Also, it's been a very long time since Venita has had someone beat her down the way this woman recently has been beat down.

But, Venita is concerned she won't have the physical strength to start the mower this year, or the weed eater, or the leaf blower.

This story gave Venita hope that she can overcome, not only her breast cancer but also her fear of being able to start her power equipment--at least the ones she's always been able to start. She often has had to ask the neighbor to start her chain saw.

Rice Socks--Good

As is common practice on the FDMB, Venita made and uses a rice sock to warm Max's ear before she draws blood to test his blood glucose level.

When Dr. Cutter suggested warm compresses to provide relief from the pain in her right breast nipple because of the ischemia (dying tissue) from the biopsy, Venita did as the Dr. suggested--a warm washcloth. But you know how fast a warm washcloth becomes a cold washcloth.

Venita decided to make her own rice sock. Real rice (not the Uncle Ben's converted type) put into the toe of a sock and tied. Put it into the microwave for 30-45 seconds, depending on how warm you want it. Venita will place her rice sock on the nipple, held in place under a sports bra, to bring oh so much relief from the discomfort.

She suggests it for anyone who wants a warm compress. Say you have back spasms and use a heating pad. Instead, you could sew together two pieces of fabric with rice inside, microwave it, and presto zippo, have a nice warm compress to lay on. Could be a real cottage industry!

Venita told Dr. Cutter about the rice sock. Dr. Cutter was unimpressed. The surgical resident in the room, though, thought it was a great idea and asked the details of making one. Maybe in the future, some patient needing warm compresses will be told by this soon-to-be-a doctor about rice socks/pads, not the warm-soon-to-be-cold washcloth trick.

Looks Like Lefty Gets a Reprieve

But she better be good or we're yanking her parole.

Dr. Cutter went over the MRI report with us in detail, and called a radiologist into the exam room, who also read it. They said they believed that the reporting radiologist was being overly cautious with her conclusions given the decription of the findings (which was all Greek and Latin to us). Today's radiologist said the reporting radiologist probably flagged Lefty for biopsy because of the known cancer in her next door neighbor. "Those findings alone would not have resulted in that recommendation."

There's also an issue with doing a reconstruction on Lefty if she is "outta here" because Venita has intercostal neuritis in her left side. This is neuritis--an inflamation of the nerves--between her ribs. This is a chronic condition; had it since she was in college. She has learned to live with the pain. Dr. Cutter said that putting an implant over that neuritis could lead to extreme discomfort. Dr. suggested that after we get through all of this, Venita should see someone about the neuritis. Venita had the neuritis treated when she was younger, but the steroid shots given with a very long needle through her breast were uncomfortable, and the effects never lasted long. So she gave them up.

Venita and Jim are going to sleep on this decision and call the surgeon's scheduling assistant tomorrow. If we don't flip flop during the night, we will be asking for an MRI wire guided biopsy on Lefty. What that involves is Venita laying on her front in an MRI coffin with Lefty hanging through a hole in the platform board and clamped in mammo plates. Boy doesn't this sound like fun already? They take MRI films, locate the area of concern, and do some external markings. They pull Venita out, take off the vice grip (whew!), numb Lefty, and insert a nonmagnetic wire into Lefty to "target" the area of concern. Then back into the MRI to see whether they got the wire where they wanted. This shows Dr. Cutter where the tissue she is seeking is located. The MRI and wire insertion take about 2 hours.

Then in a wheel chair into pre-op, where Venita goes through the whole thing she went through before with the biopsy on Righty. Local anesthetic but out of it. Will be brought out of anesthesia, sent to recovery and discharge (about 1.5 hours), then whisked home by Jim. Another 3 days of ace bandage over the whole mess.

Venita's already starting to "test" other pain meds because the Vicodin last time made her nauseous and she stopped it within 16 hours of the surgery. This time, she would like something that works, but still hasn't found any yet. She has tried Tylenol with Codeine and Percocet for the post-surgical ischemia (dying tissue) in Righty. Neither of those meds touch her pain, and Venita isn't allowed to use Ibuprofen-based products (which do work for her) because of bleeding/brusing possibilities. Going to try Percogesic (a tylenol/antihistamine combo) tonight. If you have any ideas, let us know.

The pathology report will be available a week later post biopsy. Dr. Cutter said maybe a 10% chance of cancer in Lefty. Once that path report is back, and clear (antijinx), we will proceed to mastectomy and reconstruction on Righty.

Why All These Big Dollar Words?

Carcinoma. Why not cancer?

It seems everywhere we turn with these medical professionals they are dropping a new big dollar word on us so that we have to ask for a definition. We did not take Latin in school, and even if we had, that was way too long ago.

Define it and spell it so that Venita can google it to confirm what we are being told and find about what we weren't told because we were too ignorant to ask the appropriate questions.

Yes we understand there is a need for medical "precision." Given we are both trained as accountants, we also understand that different professionals have their own "professional speak." Accountants love acronyms--that really throws people off. GASB, FASB, OCBOA, yeah maybe some of you know what those mean, but not the general public.

Venita, who now writes for a living, always tries to gauge her language by what her mother would have understood. Her mother would have understood carcinoma, but would have wondered about the need for 2 more syllables. Cancer would have been just fine.

Real Families--SHEESH!

Venita's family is the poster child of dysfunctional families. She has 6 siblings. Venita's Mom had 4 siblings; her father had no siblings.

She has been trying to contact family members because of the cancer--both to obtain info about past breast cancers and to alert them that they (if female) or their children (if female) could be at risk for invasive lobular carcinoma.

She hasn't been in contact with many of these people for many many years. Quick cut to the short version. No one in the generation above Venita seems particularly interested in passing the information onto their female children. "Give me your phone number and if my daughter Missy wants to get in touch with you she will."

Also found out that Venita's maternal grandmother had breast cancer. "Well your Mom probably didn't know about it because that's when she wasn't talking to the family." Being the poor family they were, the grandmother went to an indigent hospital for a biopsy and sent home. No follow up treatment that anyone knows about. "It wasn't all that serious." Of course we are tallking maybe 45 years ago, so certainly no way to get any information on the type of cancer (if pathology was even that sophisticated back then). "But then breast cancer didn't kill her," although she did die 4 years later, and Venita still doesn't know what from.

The exception in Venita's "real" family is her brother in Texas, Les. After Jim, Les is Venita's biggest supporter.

New Stuff

Some new stuff today. Put at the bottom, predating the creation of this blog, because it's not really important.
Cast of Characters
Schedule of Past Events

Thank you all!!

This week Venita received a gift from three of her FDMB friends. A small resin statue of a small breasted woman with arms stretched upward and her hands in fists. The statue is named Courage. The imprint on the card that came with it read:

Outside--You are a woman of strength, courage, vitality, and
spirit. You love life, and you give it your best . . .

Inside--Those are just some of the reasons so many people are drawn to you--reasons why you have a world of love and support behind you now.

Courage has gone to all our DR visits. Thank you Robin, Martha, and Julie.

An email Venita sent to professional colleagues included a comment that chocolate, fudge, thoughts, and prayers are always welcome. A few days later, she got a box with awesome Kentucky-made chocolates and fudge from our friends at NASACT: http://www.nasact.org.

Jim's neighbors Jean and Marvin had been offering help for a few weeks. Last week, they gave Jim a gift bag that included a lap throw that Jean had crocheted. Thank you so so much Jean. Venita already has napped several times with that very comfy throw.

The day Venita got her biopsy results, Alice of FDMB sent her a beautiful basket of flowers. It had a helium balloon that the cats got to play with for days until Venita found Max throwing up part of the silver ribbon that attached the balloon to the basket. Now the balloon lives on the office ceiling and the cats can only stare longingly at it.

Many many other people have offered so much support in so many ways. Food from neighbors, blog IT support from Steve, and most importantly in person statements and emails of encouragement from all of you. We have never felt so blessed.

BC Diagnostics--Shout it from the Rooftop, Fiddler!

Granted invasive lobular carcinoma (ILC) is relatively rare--about 10% of American women.

But why didn't we know there was a type of breast cancer that usually does not present on mammography or ultrasound (US)? Seems we were sold a bill of goods there. ILC is also a little tough to see on an MRI, but the MRI is a little less "blind" than mammo and US when it comes to ILC.

For you women and for you men who love women, insist on a periodic screening MRI. They are way more fun than the mammos. Yes there's the whole coffin thing going on, but you get a "panic button" and there's no pain like you get when your boobs are squeezed by a mammo machine.

However, don't give up on the mammograms. Ductal carcinoma, the more common type of breast cancer, and calcifications do not reliably show up on MRI. So alternate on the diagnositic methods.

Also talk frankly with your family elders. There was alot of secrecy back in the olden days about cancer in "private parts." And family finances could have figured into things. Family members 50 or more years ago may have been too poor to get proper diagnostics and treatment. Check with family members at your same "generational level" and below. You should know what's happening with your cousins and their children.

Breast self exam. If Venita hadn't done it, she wouldn't have found this. If she had been more vigilant, she might have found it earlier.

Finally, when a medical professional tells you that everything's OK and you're still walking around with a mass or lump in your breast or some other not-normal-for-you condition, get a second opinion or even a third. If you have gut feeling there is something wrong, there probably is.

Down off the rooftop now. Whew!

How did this happen?

In early December 2005, Venita found a ping pong ball sized mass in her right breast. Just showed up one day. Off to the GYN, saw a physician's assistant, who declared it likely fatty deposits from the onset of menopause, and sent her off for a bilateral mammogram and a right breast ultrasound (US).

Mammograms were unremarkable, US showed a small cyst. The radiologist cleared Venita to annual mammograms and instructed her to return in 4 months for a repeat US.

The following month, Venita saw her GYN for her annual exam, and he didn't like the mass, which had not changed in the intervening month. He sent her to a breast surgeon. Of course getting the appointment took a few weeks. A couple weeks after that first appointment, Venita was to have an excisional biopsy of the right breast mass, and sadly it turned into an incisional biopsy. The portion of the mass removed was about 4.5 x 2 x 1 cm. The pathology report indicated the portion removed had no clear margins, and the surgeon said most of the breast was cancerous.

The mass was very near the surface of the breast, and the cancer is in the nipple. As a result of the biopsy, the blood supply to the nipple was compromised (ischemia), and Venita is now experiencing pain there. The nipple is, in effect, dying.

The pathology report identified Venita's cancer as infiltrating (invasive) lobular carcinoma. An academic research study here describes the nature and outcomes of this type of cancer. (Don't try to read it all; it's highly technical.)

The surgeon wants to treat this cancer aggressively. She recommended a mastectomy (mast) with reconstruction, a sentinel node biopsy (which if OR-based frozen sections show node involvement, will turn into an axillary node dissection), and chemo, radiation, and hormone therapy. The pathology report showed the mass was estrogen and progesterone receptor positive and HER-2 negative, which is good news because it makes Venita a candidate for hormone therapy.

Before proceeding to the mast, the surgeon wanted more diagnostics on the left breast and sent Venita for an MRI. The MRI showed similar structures in the two breasts and a 8mm mass deep inside the breast. The surgeon is recommending a wire guided biopsy on the left breast and pathology of the excised tissue to determine involvement. Venita and Jim will be meeting in two days with the surgeon to clarify why she recommends a left breast biopsy instead of proceeding directly to a bilateral mastectomy.

Venita and Jim's entire week was a whirlwind of procedures and appointments that included the MRI, a blood test for hormone levels, a chest X-Ray, consults with the medical oncologist and reconstructive surgeon, and the consult with the breast surgeon about the ischemia.

What's FDMB got to do with it?

Venita has four cats. Our favorite is Maxwell, he's easy to get along with and doesn't cause any trouble. Well, he does beat up on Lily, but she usually deserves it.

In July 2005, Maxie was diagnosed with diabetes mellitus. Didn't know cats could get that. The vet sent us home with insulin, instructions on how to use it, and a suggestion that we buy some Karo syrup in the event of a hypoglycemic attack. That didn't seem like enough for Venita and she searched the Internet for information about the disease. She found the Feline Diabetes Message Board.

With alot of hard work, including taking blood from Max's ear at least 4 times a day and testing it for blood sugar level with a glucometer, and the help of scores of people on the FDMB, Max had his last insulin shot on 12/31/05, and is now diet controlled within normal blood sugar levels.

That Board brought Venita new friends, many of whom are sharing this journey with us.

That Board also brought Venita to be involved in the Pet Diabetes Wiki, although much of her activity there is curtailed with this breast cancer challenge. You can read about Max's journey through diabetes and see his picture in his case study on the wiki.

Instructions for Commenting

Posting Comments No Longer Requires Registration

See also this post for an update about commenting on this Blog.

Please add a comment to any post should you wish to. To do that, hit the comment count link at the bottom of the article. (If your popup blocker is enabled, hold the Control key when you click on the link.) A popup window will take you to a separate screen where you can type your comment.

If you aren't a registered Blogger user, your comment will show up as Anonymous. Please sign your comment with a name I recognize so I know who it is.

That screen also will give you a link to sign up for a blogger account if you don’t already have one. That way you can have a blog (even if you don't use it), and identifies your comments by your blogger name, rather than "Anonymous."

Steve offers these tips for the somewhat challenging registration process, should you care to do that:

To leave a comment, you might want to register with Blogger too, like Venita just did.

It's easy, but remember that there are millions of people out there with Blogger accounts -- your username has to be pretty unique.

When creating a username, you can't use spaces or (&) ampersands or commas or periods. Just letters, numbers, dashes and __underscores.

So if you want to use your own name, use your full name, like I've done (steverapaport, or steve-rapaport, or steve_rapaport are all valid. So are ("martha_and_jim" or "steve_and_jock").

If you want to use something more anonymous, you can make up handles or pseudonyms, with numbers, like "flown_the_coop_1963" or "why-am-i-doing-this".

But just plain "jim" probably won't work -- someone has that one already.

The rest of the signup is pretty obvious, just make up a name for the title of your blog (even if you don't plan to use it), and fill in the rest.

It gets more interesting if you also want to post pictures. More on that later...

Seeing Your Comments

When you post a comment,you should be able to see it right away. Venita also has enabled the blogger to email her comments as they are made.

Pic of Jim and me

Schedule of Upcoming Events!!

October and November, Daily radiation on right breast for 7 weeks (Re-evaluation and CT Correlation on September 28)

October and November, Saline filling of left breast expander implant

December or January, Surgical replacement of expander implants with silicone implants

See also the schedule of past events.

Cast of Characters

The contributors:

Venita--The woman with breast cancer, and the one who writes most of this stuff

Jim--Venita's dear husband, working with Venita to survive breast cancer, but technology challenged so he doesn't directly add to this blog

Steve--A friend from the Feline Diabetes Message Board and the Pet Diabetes Wiki who knows IT and who is a co-administrator on this site because Venita also is somewhat technology challenged.

The doctors:

Dr. Cutter--Diana Dickson-Witmer, breast surgeon
Dr. Chemo--Timothy Wozniak, medical oncologist
Dr. Boob--Joe Danyo, reconstructive surgeon
Dr. Nuke--The radiation oncologist, to be identified later in the process
Dr. Primary--Christine Diehl, Venita's family doctor (primary care physician)

Longwood Gardens Pictures

To accompany these pictures, I have found three wonderful renditions of "Memories" from the musical Cats. One on piano, one on harmonica, and one on acoustic guitar. Please choose whichever one (or maybe all 3) that you would like to hear as you look at the pictures.

Alice and Tabby




Ann and Smokey (GA)






Bev and Mitsy




Cheri and Patriot


Cindy and Tritone




Cindy and Patches

Deb and The Colonel, her Dad


Deb415 (Deb and Gizmo)

dian and wheezer



Donna and Shiloh and McKaela


Francine and Garth; not really, this is Francis the talking mule


Heather and Chico; not really, Heather Locklear




Holly and Belle







Hope4Bella (Marlene)

Jess and Earl









Julie and Smokey


Kate and Dozer

Kris and Jane



Kristen and Bobcat





Lisa and Merlyn






Maggie and Mousey Tongue; listen to Maggie May here; I love this song!! I hope Maggie does too.




Marjorie and Tigger (13 YO pic)


Pam and Stasha; nope another Pamela





Peaches (Sheryl)













Robin's DH Glen

Robin and Peri

Sandra and Barney





Stefani and Toonces Click--here--to visit the Toonces project.




SunCat


Venita and The Boyz, and Jim, before we got sick. Our blog is here.


WCF and Meowzi

Schedule of Past Events

May 2006
Week of 5/15/06--Some PT; visit with Dr. Primary; Chemo 3; begin expanding implant; Bailey's eventually terminal illness begins to get serious. Details here
Week of 5/8/06--Some PT; some draining; working on chemo pain management. Details here and here
5/2-7/06--Chemo 2; started PT; PAP smear; and follow-up with Dr. Cutter. Details here and here
5/1/06--Dr. Boob draining.
5/1/06--Physical theraphy evaluation. Details here

April 2006
4/28/06--Dr. Chemo; checkup and write orders for Chemo 2.
4/20/06, 4/24/06, and 4/27/06--Dr. Boob look-see/draining.
4/19/06--Neulasta shot. (Day after each chemo session.)
4/18/06--Chemo training and first chemo session.
4/16/06--Emergency wound draining by Dr. Boob. Details here. Drainage explained here.
4/13/06--Follow up with Dr. Cutter and Dr. Boob. Dr. Cutter removes drain. Details here
4/12/06--First consult with Dr. Nuke. Details here
4/10 and 11/06--Dr. Chemo approves Venita for chemo to start next week, provided the drain is out; Dr. Boob followup (drain stays in and scar looks good). Details here
4/3/06--Venita's wellness and sanity checkup with Dr. Primary and surgery follow-up with Dr. Boob. Details here

March 2006
3/30/06--Jim's "revisit" with his GP to assess results of stress treatment. Jim's OK; continue reduced diuretic
3/29/06--Surgery with Dr. Boob to remove necrotic tissue from right breat mast scar. Details here
3/28/06--Consult with Dr. Chemo. Details here
3/27/06--Path reports from Dr. Cutter, post-surgical exam by Dr. Boob, and Jim sees his GP for stress reaction. Details here
3/23/06--Post-surgical exam by Dr. Boob's nurse
3/22/06--Breast cancer conference with Dr. Susan Love. Details here

Yes, Venita's working though to add links

3/19/06--Post-surgical exam by Dr. Boob
3/17/06--Right breast mastectomy and reconstruction; overnight stay
3/15/06--Left breast biopsy (outpatient)
3/14/06--Dental cleaning and exam
3/13/06--Consult on overall situation with Dr. Primary (obtaining drugs for anxiety problems); history interview with surgical nurse.
3/7/06--Meet with lawyer to update will and health care and health care powers of attorney.
2/28/06--MRI consult with Dr. Cutter
2/27 06--MUGA Scan
2/23/06--Initial consult with Dr. Boob, reconstructive surgeon
2/22/06--Post-surgical checkup with Dr. Cutter. Ischemia in right breast nipple. Initial results of MRI showing possible left breast involvement.
2/22/06--Initial consult with Dr. Chemo, medical oncologist. Chest X-Ray, blood draw for hormones.
2/20/06--MRI on breasts.
2/16/06--Post-surgical consult with Dr. Cutter. DX of breast cancer
2/10/06--Biopsy (outpatient)
2/9/06--Presurgical consult with Dr. Cutter
2/7/06--History interview with surgical nurse. Stress test because of failed EKG. Passed this one!
2/6/06--EKG with family doctor. Failed test.
2/3/06--Pre-surgical blood draw
1/26/06--Intitial consult with Dr. Cutter, breast surgeon
1/5/16--Annual exam with GYN. Referred to breast surgeon
12/12/05--Bilateral mammogram and right breast ultrasound
12/5/05--GYN visit for breast mass

Glossary of Terms and Acronyms

These are some of the terms and acronyms we are using in this blog.

Axillary lymph nodes--The lymph nodes in the underarm area. See this explanation.

Invasive lobular carcinoma--The relatively rare type of breast cancer that Venita has. More common breast cancers are ductal carcinoma, either infiltrating or invasive (meaning prone to spread) or in situ (meaning isolated to the breast ducts).

Mammo--A mammogram, an unpleasant type of X-Ray that people (usually women but sometimes men) get on their breasts to identify ductal cancer and calcifications.

MRI--Magnetic resonance imaging, a disagnotic test that Venita has had to find unusual structures in her breasts.

MUGA Scan--A MUltiple Gated Acquisition scan that Venita got to make sure her heart was OK for chemo. They inject a radioactive dye and then take pictures of the heart's function with a Gamma camera. (As Cindy suggested, try to say "Gamma camera" fast 10 times.) More details here.

Neuropathy--Injury to the peripheral nerves in the hands and feet. Senory neuropathy causes pain, numbness, tingling, or loss of sensation because it affects the nerves needed for touch, temperature, and pain. Motor neuropathy results in a disruption of signals to the muscles and can result in muscle weakness, clumsiness, balance problems, and foot drop.

Path report--A pathology report, a lab test that provides details about whether excised tissue is cancerous and if so the nature and features of the cancer.

Sentinel lymph nodes--The one to three lymph nodes that are the first reached by lymph fluid from the site of a breast cancer, and thus the presumably the first to show a spread of breast cancer beyond the breat tissue. See thisexplanation and this explanation.

US--Ultrasound, a painless diagnostic tool that uses sound waves to "see" inside the body. During this journey, Venita has had them done on her heart during the stress test and on her breasts.

Wire guided biopsy--A procedure used to perform a biopsy on breast tissue when there is no palpable mass. A diagnostic, like mammography or MRI, is used to locate the "suspicious" tissue, and a wire is inserted into the breast to "target" it for the surgeon. See the further explanation of Venita's upcoming MRI wire guided biopsy here.

Internet Sites

This is a list of some of the breast cancer organizations and books we have found. Let us know if you have others.

American Cancer Society
Breast Cancer.net
Breast Cancer.org, which includes discussion forums
Cancercare, which includes discussion forums
Cancer Network material on breast cancer (You have to be a medical profession [HAH!] to view the articles)
Cancer Research UK
Cure's 2007 Cancer Resource Guide
Dr. Susan Love's Breast Book, 4th edition
Dr. Susan Love's commercial site
Dr. Susan Love's Research Foundation
Hartford Hospital Video on Sentinel Lymph Node Mapping
Imaginis, the breast cancer resource
The Inflammatory Breast Cancer Research Foundation. IBC is really scary stuff and unlike any other type of BC.
Susan G. Komen Breast Cancer Foundation
Lance Armstrong Foundation. Yep, that bike rider with metastatic testicular cancer.
Living Beyond Breast Cancer
National Alliance of Breast Cancer Organizations (NABCO)
National Breast Cancer Coalition (NBCCC)
National Cancer Institute (NCI)
National Coalition for Cancer Survivorship
National Lyphedema Network (NLN)
Web MD Guide to Breast Cancer Really comprehensive!
Y-ME National Breast Cancer Organization

Breast Cancer Research article about infiltrating lobular carcinoma
A history of breast cancer
A page with a bunch of links
Booklet: Your Guide to Breast Cancer Treatment. One of the best we've seen; short but not overly elementary.

Delaware-specific sites
Delaware Breast Cancer Coalition
The Wellness Community--Delaware

Overview of This Journey

This is an overview of Venita and Jim's journey through breast cancer diagnosis and treatment.

Updated May 15, 2007

After finding a large mass in her right breast in December 2005 and going through all the appropriate diagnostics, including a surgical biopsy of a 4cm mass (with only one clear margin), Venita was diagnosed in February 2006 with invasive lobular carcinoma. (“Invasive” cancers are ones that spread.) Invasive lobular carcinoma is a relatively rare breast cancer (about 10% of American women) and a cancer that due to its nature and the density of V's breasts does not present on known breast cancer diagnostic tools--mammography, ultrasound, or MRI. This type of breast cancer usually only is identified after it becomes a palpable mass, and by that time the cancer usually is a very large tumor and has advanced beyond the breast tissue.

After undergoing more diagnostics and consultations with most of the medical professionals who will be V's “cancer team” for more than 5 years, on March 15 she had a surgical biopsy on her left breast and on March 17 a mastectomy (removal) and the start of implant reconstruction on her right breast.

The pathology of the three sentinel lymph nodes taken from V's right armpit (axillary nodes) showed that only one had measurable cancer cells, and the amount of cancer there was very small. Between that cancerous node and the possibility of “false” findings of no cancer in the other 2 nodes, the chance that the cancer has gone further than those three nodes is, ummm, maybe around 20%.

The pathology on the left breast showed 3 different kinds of cancer, one a small tumor of the same invasive type that was in V's right breast and two other types of breast cancer that are “in situ” (or noninvasive) cancers (which in effect are pre-cancerous conditions). The biopsy removed the invasive cancer with “clear margins” but the in situ cancer was peppered throughout the sample, meaning it is likely “peppered” throughout the left breast. (Again, none of this showed on conventional diagnostic tests.) Therefore, V's left breast was removed and the expander implant process started on September 8, 2006, after V had finished and "recovered" from chemotherapy.

Venita was to take a 8 treatment course of chemotherapy, the "standard of care" given the pathology report for her Stage 3A cancer. Because of severe peripheral neuropathy in her hands and feet, the final chemo treatment of Taxol was withheld. Venita was on "dense dose" chemo, meaning an infusion every other week. For the first 4 treatments, Venita also gave herself a shot of Neulasta to build up white blood cells the day after chemo. She also got a blood test every infusion day to check her white blood cell count.

Venita had a compromised immune system after the first four chemo treatments, and was hospitalized for fever of unknown origin. She also was diagnosed with "a touch of pneumonia." Chemo was put on hold for three weeks.

Venita also endured a 7-week course of daily radiation on her right chest wall and axillary lymph nodes. No radiation was needed on the left side because the single sentinel lymph node taken was clear of cancer. The radiation left her severely burned and scared.

She also has started a five year regimen of hormone therapy. She also has had quite alot of physical therapy to try to regain her range of motion in her arms, and has recently started on PT to address the continuing hand and foot neuropathy.

Venita's breasts were to be replaced with implants, a procedure where the reconstructive surgeon puts in a temporary breast implant that is the expanded with saline injections over several months to stretch the skin and then replaced with “permanent” (useful life of ~10 years) silicone implants. She had the "exchange" surgery on February 6, 2007. The attempt to place a permanent implant into the right side failed because of the radiation damage and, she found out later, infection. She was not told until after the surgery that the chance of failure or "unacceptable" cosmetic results on radiated tissue was 90%. The left side is looking pretty good.

Venita now has to decide what to do once she has completely healed from all this "treatment." Options include a prosthetic breast for the right side; a removal of the left side implant so that she simply goes "flat"; and having a "flap" of skin taken from her back to replace the damaged skin in the front and try the whole implant business again.

When the implant replacement failed (topped by losing her favorite cat to cancer a few weeks later), Venita went onto a severe depression. She continues to try to seek help for her inability to function. She also applied in May 2007 for Social Security Disability Insurance. It is a long shot, and it might take up to 6 months to hear the outcome of the first application.

Throwing a wrench into this whole thing was Jim being diagnosed with end stage alcoholic liver failure in late August 2006. Venita was finished with chemo, anticipating her second mastectomy in 2 weeks, and facing the radiation.

Jim was hospitalized for two weeks and then discharged to a skilled nursing facility (SNF) because Venita was having surgery just a few days after his hospital discharge. Jim stayed at the SNF for about 2 weeks, until Jim and Venita insisted he be released. It was not a pleasant stay for him. He came to Venita's home on Medicare-financed home health care.

He was home for 2 weeks when he developed spontaneous bacterial peritonitis which spread infection to his kidneys, liver, and blood stream (sepsis). He was hospitalized in ICU for several days, was then sent to the medical floor, developed a severe drop in his platelet count and sent back to ICU for blood and platelet transfusions. He was there about a week. The DRs were ready to let him go, to discharge him to a hospice, but Jim rallied and was sent back to the medical floor. (All this time Venita is going through radiation.)

Jim and Venita decided that they wanted to try to rehab Jim, not just "let him die." They asked for a transfer to a specialty long-term acute care rehab hospital. Jim was there over a month, but got excellent care and was able to come home the day before Thanksgiving, again on home health care, although a different company.

After a couple of weeks, Jim experienced problems with low body temperature and low blood pressure because of his blood values, but refused to return to the hospital. He would have fainting spells or mini-seizures when he changed position, and had extreme mental confusion. His family DR agreed to try to treat him at home, and the withdrawal of diuretics started to stabilize his condition. During this time, we had to hire private-duty aides a few times a week to care for Jim at night so Venita could sleep.

The 2nd home health agency (which was as bad or worse than the first) was getting close to discharging Jim from its care because he was "stabilizing." We felt he wasn't stable enough, but were glad to rid ourselves of them. We had only stayed with them as long as we had because they had an excellent physical therapist. We interviewed several Hospices, which Jim qualified for because of his terminal diagnosis.

Amazingly, as soon as we signed up with a Hospice service, Jim started to improve by leaps and bounds. He was no longer incontinent, he could stand without fainting, he gradually moved from wheelchair to walker to a cane to no assistive device (inside the house). He can come up the stairs, make himself small meals and snacks, do his own laundry; it's a miracle.

Hospice has released Jim. It is rare that folks "graduate" from Hospice, but he did. We were so very pleased with the Hospice and now know where to turn should his condition deteriorate again. We are no longer fearful of the "concept" of Hospice. Turns out Venita's medical oncologist is the medical director of Jim's hospice.

Jim is selling his two-story condo and wants to buy a ranch house, either alone or with Venita. He got a driving evaluation and has been able to regain the independence of driving.

During this long journey, we also have had some other sorrows. We lost 2 of Venita's cats: Bailey in June 2006 and Maxwell in March 2007. Two of the sweetest boys.

Chemo--OTC Supplies and Soft Food

Venita is making this list of over-the-counter supplies that she is using during chemo in case you have another friend that has to go through chemo. Perhaps you can make hir a gift basket of these supplies.

1. Biotene mouthwash and toothpaste. There are other Biotene products, like gum and a pocket spray. You can gets many of these Biotene products from any pharmacy.
2. Chewable antacid, like Rolaids or Tums. Or a liquid antacid, like Maalox or Pepto-Bismol. Or an acid reducer tablet, like Pepcid AC, Prilosec OTC, or Zantac. Often, antacids/acid reducers is a personal preference thing, so a sample or travel pack of various products might be the way to go. Here's a list of the antacids/acid reducers that Hocks.com carries.
3. Diaper rash cream, for the anal soreness that comes with diarrhea.
4. Wet ones or a similar wet wipe product (make sure it's flushable; some are not).
5. An anti-diarrhea product like Immodium Advanced, which also handles gas, a frequent side effect.
6. A product for constipation, like FiberCon.
7. OTC pain meds, like Tylenol and Ibuprofen.
8. Lip balms, like Carmex or Chapstick (in the soft squeeze tube) and Abreva, an OTC cold sore medicine. (We get dry and cracked lips, and there is a possibility of viral infection.)
9. A large see-through box with a locking top in which to keep all the meds. Sandwich-sized zip lock bags in which to keep individual meds. A permanent marker with which to mark the zip-lock bags.
10. Alcohol wipes if your friend has to give hirself shots (like of Neulasta).
11. A pill splitter/crusher.
12. Non child-proof caps for prescription drug vials. (A pharmacist will give you these for free).

Venita also is making this list of soft foods that she finds palatable when she has mouth sores from chemo. Again, you could make a friend a gift basket of small/sample amounts of these foods.

1. Small curd cottage cheese. With non-acid fruit like canned pears or peaches.
2. Le Creme yogurt. Comes in a four-pack.
3. Progresso lentil soup with shredded soft cheese (like Monterey Jack or Colby). This is rich, so V doesn't know why it appeals to her.
4. Bananas.
5. Toast with peanut butter (Jif is better than Skippy), or with margarine and jelly. (Does your friend have a toaster?) Try different "exotic" types of breads, like cinnamon or challah. The grocery's bakery will slice bread loaves for you.
6. Applesauce. They make some different flavors, and in individual serving containers.
7. Puddings. Again this is sold in individual containers, both in the pudding aisle of the grocery and in the refrigerated section.
8. French toast. Man, that goes down slick. Get some "exotic" syrups and non-acid fruits to dress the top. (V has found red grapes and strawberries to be acidic. Go figure.)
9. Scrambled eggs and egg salad. (V never has been a big egg person, so she eats these foods sparingly.)
10. Avocados. (V will smash them and spread them on toast, or just eat slices.)
11. Smashed (with skins) potatoes and chicken gravy. (Butter Red or Yukon Gold potatoes are the best.)
12. Granola. (Have to let it "soak" in milk for awhile to soften it up.)
13. Oatmeal with brown sugar.
14. Frozen yogurt smoothies (Julie's suggestion, although V hasn't tried them).

V has read that she needs to stay away from fresh uncooked fruits and vegetables when her white blood cell count is low from chemo. She asked the onc nurse how she would know, because V doesn't get the blood test results. She was told that with chemo on Tuesday, she should avoid those food from the next Friday (3 days hence) through the following Tuesday (7 days hence).

Let us know if you can think of other OTC supplies or soft foods to add to this list.