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.