This Week's News

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

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

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

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

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

Need Rice Ideas

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

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

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

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

Sadly, we think rice wine is out.

Draining

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

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

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

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

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

Side Effects

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

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

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

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

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

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

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

Fallout Lottery

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

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

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

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

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

Chemo

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

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

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

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

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

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

Jim's Recovery

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

Today's Plans

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

Challenges

When might this let up?

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

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

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

Jim to his GP in about 45 minutes.

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

Jim Fell

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

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

Thank God, no facial fractures, no stiches.

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

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

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

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

The Week Ends

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

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

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

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

Loving Pets (and Maybe Even People)

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

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

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

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

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

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

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

Meet Dr. Nuke/Venita Will be Shooting Herself

Dr. Nuke

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

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

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

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

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

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

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

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

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

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

Venita Shooting Herself

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

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

Start Chemo Next Week!

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

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

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

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

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

Just Another Manic Friday

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

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

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

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

Insurance Woes/Doctor Visits/Other Things

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

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

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

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

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

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