Today's Surgery Results

Don't know the formal name of the procedure, but Venita's mast scar had failed to heal, turned black, and was dying. Dr. Boob took her into surgery and cut out the dying tissue and restitched the opening. He told Jim that it went well; that there was more tissue to work with than he had thought. Dr. Boob also put a second Jackson Pratt drain into the wound.

Venita didn't have a formal surgery time. She was an "add-on," got a call at 1pm, sat and cooled her heels in pre-op/holding until 3:30pm, one hour in surgery, out of the building by about 5:30.

So many of the OR floor nurses remembered Venita. That was nice; felt like they had her on "special watch." And Venita is getting pretty good about knowing the "routine" about the info they need, what to wear, and where to go.

Already Venita's incision feels better. It had been starting to feel as bad as her right breast nipple when she got the ischemia and the nipple went gangrenous.

Nothing more for Venita this week. Jim get's a follow-up with his GP for his stress reaction tomorrow.

We're holding it all together pretty well.

We Love Dr. Chemo

Isn't that a strange thing to say? But everytime we leave his office we feel so much better about what's happening to us. We feel true hope.

Dr. Chemo too was saddened about the cancer in Lefty, and said it really doesn't matter if we do chemo before or after Lefty's mast. He said, however, that we have to wait at least 2 weeks after tomorrow's "re-surgery" on Righty to see whether Venita's good to go. Chemo lowers the body's ability to heal so chemo and surgery do not mix.

Dr. Chemo said that from what he's seeing in the path reports, there's no reason to worry about bone scans, liver scans, any overian treatment, or genetic testing (given Venita has no children). Tests he previously ordered came back fine--chest X-Ray, MUGA scan, hormone level test. (That hormone level test apparently told him that Venita still is premenopausal and thus a candiate for tamoxifin therapy.)

Venita will be on the "standard of care" for chemo and hormone therapy based on Righty's cancer staging of T3N1M0. (Yep, once we understand this staging thing better, we'll write about that.) For chemo, that will be 4 treatments of Adriamycin (chemical name doxorubicin) and Cytoxan (chemical name cyclophosphamide), once every two weeks, followed by 4 treatments of Taxol (chemical name paclitaxel), once every two weeks. If she has problems with the chemo, the interval between treatments may be lengthened to three weeks. Each "infusion" will take 2-3 hours. The days after each infusion, Venita will need to return for a white blood cell count and possibly a shot of Nulasta.

The chemo will be followed by 5 years of Tamoxifin, hormone theraphy that blocks the production of estogen and progesterone, hormones that the path reports show "feed" Venita's cancers.

Dr. Chemo thinks we need to get Dr. Nuke on line in some of the decision making that is going on about timing of treatment, so Jim and Venita now have an appointment with Dr. Nuke in 2 weeks.

Dr. Chemo also explained the downsides of having a portacath to deliver the chemo, and one of his nurses found Venita's extra large veins just fine for direct infusion. So that's two fewer surgeries (inserting and removing the port) for Venita (and two fewer encounters with the ever-congenial Dr. Cutter).

We now have the names of 3 local breast surgeons to consider for 2nd opinions. We feel less pressure on moving quickly in that regard now because Dr. Chemo seemed to have no problem leaving Lefty in place until after the chemo.

Thank you all so much for continuing to suffer through all this with us.

Bad News: Path Reports/DR Visits

We saw Venita’s Dr. Cutter and Dr. Boob and Jim’s family doctor today.

We haven’t gone through the path reports in detail, but Dr. Cutter says (a) Lefty has 3 kinds of cancer: (1) invasive lobular carcinoma, which is what was in Righty, (2) lobular carcinoma in situ, and (3) ductal carcinoma in situ. We will put a detailed explanation in later, but “in situ” means cancer that stays within the lobe or duct and does not spread elsewhere as “invasive” cancer spreads to other tissue (in the breast or outside of the breast). The invasive cancer in Lefty is relatively small (size wise) and the breast surgeon is recommending waiting until after chemo to do Lefty’s mastectomy. Dr. Boob has to research the potential effect of trying to insert an implant in Lefty because of Venita’s left side’s intercostal neuritis.

You may recall that Dr. Cutter took 3 sentinel nodes during Righty’s mastectomy. Despite the OR-based pathothology showing no spread of the cancer, the “final” path report shows that the 1st sentinel node draining Righty had micrometastatic carcinoma, with the largest tumor cell measuring 1 mm. Of the other 2 sentinel lymph nodes, one was negative for metastatic disease and the other had tumor cell deposits, but they were too small to constitute even micrometastatic disease. Dr. Cutter said the “standard of care” would be for her to go back in and take ~15 nodes in an axillary node dissection. However, she feels the pathology results would be negative and that Venita would unnecessarily be put at risk for lymphedema.

Venita and Jim are considering asking for a second opinion on the surgeon’s recommendations on Lefty and on Righty’s axillary node dissection. We have asked Dr. Boob and will tomorrow ask Dr. Chemo for 2nd opinion recommendations.

The surgical scar from Righty’s mast is not healing properly. The scar is black, indicating necrosis (death) in the scar tissue. Dr. Boob wants to operate on Venita this Wednesday to cut out the dying scar tissue and attempt to resection the wound. Dr. Boob said “hopefully” this would be successful. He said this outcome is not unusual with a small breasted woman where there is little skin left from the mastectomy and with a smoker. (Note that although Venita is 17 days without smoking, she is a classified as a “smoker” until she has been smoke free for a year.)

Dr. Cutter will be putting in the portacath for the chemo a week from Wednesday.

Jim is having what his family doctor believes is a stress reaction. In January 2005, Jim had Synvisc shots into his knees to deal with arthritis. At the same time, the DR changed Jim’s blood pressure (BP) medicine so that it wouldn’t include a diuretic. When Jim was in FL for Phillies Baseball Spring Training in March 2005, he got a very bad skin rash (reaction to the Synvisc) and his feet and legs swelled up big time (reaction to the different BP medicine). Jim has been fighting the rash on and off since then, but a change back to his old BP medicine relieved the swelling problem. Starting last Thursday, everything blew up—rash and swelling. Today, Jim’s DR gave him a cortisone shot for the rash, asked him to take a daily diuretic, and wants to see him again on Thursday.

We'll follow up when we can, but right now we are wiped out. Call, PM, email, or respond here. Love you all!

(Note: This news posted on the FDMB here.)

Meals on Wheels: Thank you Libby B

Friends and neighbors have been bring by meals to help make sure Venita eats. Venita is reknown for going days without eating, and that definitely is not good for her right now.

Jim and Venita have these dear friends Dick and Ellen. Dick was 80 last August; he is spry both mentally and physically. For his 79th birthday, Dick rode his motorcycle up I95 to the Boston area to visit family. Ellen's last birthday was the Sunday before Venita's mastectomy. What were you Ellen? 76? Ellen is diabetic (which has special meaning to Venita given her diabetic cat Max), is a great "grandma" cook, and has wonderful stories all the time.

Two days after Venita's mast, Ellen and her daughter Libby B came to visit Venita. Libby B is an RN and the one who Venita talked about in this post. Libby "signed onto" Venita's "meals on wheels" program. Last night Libby showed up with the most incredible meal (featuring stuffed pork chops) as well as Ellen and Dick. Venita got to have a meal with company without anymore work than a little vacuuming and setting the table. It was a marvelous chance for her to "get out" without leaving the house.

Fun Stuff Venita Got

These are some of the great things Venita received in response to her request for fun stuff. Thank you all so much for helping pull her through the last couple of days.

Thank you Cindy, Dave W, Fairydragon, Goldy, Heather, Julie, Les, Libby A, Martha, Mary M, Robin, and Steve

Washington Post's Mensa Invitational--some great new words, including ingoranus.
Taste test
Curtain rods
The Nigerian 419 Scam
The Scambaiting Archives
A really funny series of scambaiting email
Gorillaz Room Froggaz, where you can easily make frog pies (Use the directional arrows on the right side of your keyboard to move the frogs across the road and river.)
Church of the Flying Spaghetti Monster
Why Cats Paint (also here)
Why Paint Cats
The Amazing Le Woogie Card Trick
Primary cause of penguin deaths
Pat Conroy's book, Beach Music
Burnt Bubba
Mrs. O'Conner's Breast
The Colorectal Surgeon's Sing-a-long
Who's in Charge Here?
Beer Stand video
Games
Catowner.com
Stuff to do when you are bored
"Intelligence Test"
Kittenwar
Texas Sayings
Alice's Internet Jokes (not our Alice)
Parrot joke
The Llama Song
Stupid Videos, especially a cat massaging a dog.

Some folks sent some other really great downloaded videos, but Venita couldn't find them on the Internet to share with you all.

Updated: from Lori--

The Great Schlep

Breast Cancer Conference

Yesterday, Venita went to the Delaware Breast Cancer Coalition's annual conference. The morning was a panel discussion about the psychosocial aspects of breast cancer. The whatza?? Managing certain non-health aspects of the illness—anxiety/depression medications, mental health counseling, and on-line support groups.

The on-line support group discussion was weak; the speaker has been analyzing the content of unnamed breast cancer discussion boards—-looking at, for example, the percentage of posts looking for technical data v. the percentage looking for support and the differences between content from men v. content from women. One focus of this speaker’s research is to compare/contrast the electronic medium to a face-to-face support group. She seems concerned that the electronic discussions are not moderated. No recognition of the benefits of the 24/7 availability of others who have gone/are going through the process. Made Venita think about the FDMB and how some veterinary professionals are intimidated by that site.

Later in the morning, Jim joined Venita for a talk by Dr. Susan Love, formerly a practicing breast surgeon, now an academic/advocate. Dr. Love is the recognized expert in breast cancer. She has two Internet sites: this one for her “commercial activities” and this one for her research foundation.

The topic of Dr. Love’s talk was the shifting paradigm of breast cancer treatment. It is absolutely amazing the strides that are being made in treating the disease, mostly in identifying that there are various types that require customized treatments. Getting away from the cookie cutter approach. Dr. Love is a captivating, down-to-earth speaker. If you ever get a chance to see her, do.

Dr. Love has a book—The Breast Book, newly updated. Several people had recommended that Venita read it. She bought a copy yesterday. Venita recommends that if you ever have another friend diagnosed or scared with breast cancer, don’t recommend the book. Get your butt down to the bookstore that very day and give it to your friend. A well-spent $22.

Off topic info from Dr. Love’s talk. This summer, the FDA is expected to approve a vaccine against the Human Papilloma Virus (HPV) that causes cervical cancer. That is an extremely common sexually transmitted virus. This is an incredible breakthrough against that disease, and we recommend that as info becomes more available that folks consider being (and having their children) vaccinated (males as well as females).

Boring and Bored

You keep checking in and there’s nothing new. BORING!! Venita feels the same way. Physical activity is out, so she’s sleeping a lot. Maybe 2-3 hours awake, then 2-3 hours asleep. Very boring. She would love to go for a slow walk around the block, but she’s not even supposed to do that. She’s looking forward to taking the trash out for pickup tomorrow. Isn’t that pathetic?

Please send Venita links to fun stuff on the Net or jokes (even off color ones). Nothing that takes too much bandwidth; she’s on dial up. She already knows about stuff on my cat. She needs some laughing out loud.

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.