This Is Harder Than I Thought It Would Be

Jim is in such a state of confusion, I feel like I am dealing with someone with Alzheimers.

It has to be his ammonia level, combined with the change in situation. (Jim got terribly confused the first few days out of the hospital to Shipley.) I feel like he's had a week's setback. Jim had blood drawn on Friday, and I'll try to get the results of his ammonia level from Shipley today. I suspect they cut his lactulose back too far. If his ammonia is back up, I'll call his GP to see whether and how much I should increase it.

The nature of Jim's confusion--pretty much everything. He tries to use the TV remote to call people (even though he doesn't have their numbers) and the phone to change the TV channel. Therefore, my intent to use the phone as an intercom (which it does) will not work because who knows what TV channel Jim will end up with me if he tries to buzz me.

He's also became pretty belligerent yesterday. Kept calling me a bitch (with different adjectives in front) because I would not place his walker within his reach whem I was out of the room. He spent an hour sorting through the money in his wallet, putting the bills in different order, and seeming to count it. Then later he told me he had to go to the ATM because he has no cash. I offered and he accepted an Ativan for his anxiety. Unfortunately, that really knocked him down and he didn't want much dinner (I had made a roasted pork tenderloin with fresh fetticine with pesto).

I keep hoping this is all an anxiety thing that will clear itself up in a few days. Luckily, I found a message on Jim's voicemail that one of the GI specialists had scheduled an appointment for him this Wednesday, and Jim wants to go then. Maybe she can shed some light/hope on this dementia he's experiencing.

A visiting nurse group started its home health care evaluations today. A nurse did the evaluations for skilled nursing care and a home health aid. Jim will see a nurse ~3 times a week, and she will take his vital signs, check his breathing, and check him for signs of recurring liver disease (such as belly bloating and swollen legs). She also will draw the blood for the required lab work.

The home health aid will come in 3 times a week to help with personal needs, such as a shower, shaving, toothbrushing, and do his laundry and feed him a meal as needed.

Tomorrow we will get the evaluation from the physical therapist. There also is supposed to be an occupational therapy evaluation somewhere.

After a hospital stay, Medicare pays 100% for these home health services for up to 9 weeks is deemed medically necessary by the service provider.

Would I do this again? Probably, but I 100% wouldn't want to. Taking care of Jim right now is a 24-hour operation that is thankless when he starts calling me a bitch, and stressful/guilt-inducing for me when (in an outside voice) I have to set rules or correct him about how he is mobilizing. But I'll discuss that with him after he gets better, which I expect him to do. We'll have a plan in place in case this happens again, whether it's him or me that gets into this nasty place he is in right now.

My apologies to Betty, who called yesterday while Jim was in the middle of an episode. I understand, Betty, how you first thought Jim was teasing about me being a bitch. We had bantered in front of you when you saw him in the hospital. Now is indeed different. He is having dementia espisodes that I am completely untrained to handle.

For example, he woke me tonight yelling and ranting about 8 women in 4 planes that were crashing. We were up more than 2 hours with that in his mind. Now he's been down in the basement sleeping for 2 hours while I've been on the Internat checking the FDMB and writing this. I better head off to sleep; I can't let him get too far ahead of me in the sleep department.

Jim's Home

Yesterday, Shipley told us they were releasing Jim AMA--Against Medical Advice. They told us Medicare would not pay for any of his stay there if he left AMA. Also, the DR refused to write any scrips for meds, labs, or a home health care evaluation.

V called Medicare, and was told that Medicare would pay even with an AMA discharge. V called Jim's GP and asked him to write the scrips. Apparently, DR GP got on the phone with the facility DR and all of a sudden Jim is not being released AMA; a clean release and scrips written. V had to sign a statment that the facility's staff and DR had recommended against Jim's discharge. She did.

What a mess when V went to get Jim this morning. Apparently no services the day of discharge. They has given him breastfast and meds, but no clean up and no PT. I had told Jim he had to do both PT sessions before he came home, so he was really thrown a curve when they refused his PT.

Jim was terribly confused. His room nurse, who had never treated him in the 2 weeks at Shipley, had no way to measure Jim's confusion. He gave him an Ativan for anxiety.

Jim's home now. Had a nice lunch and a 2-hour nap with Max and Ennis and V, and seems a little stronger. He even tried to start an argument with V about how he did need his walker.


Freaked V out when her neighbor nurse Mary yesterday said that Jim may never be able to go to his own home and would have to live with V. That wasn't the marriage we signed up for.

The Sun Will Come Out . . .

. . . tomorrow. Although it's pretty bright today; crisp and clear.

The neighbor just came over and put a hand held shower head into Jim's bathroom. The neighbor also said he could install whatever handicap rails we might need, even over the 54 year old tile that is in the bathrooms.

Getting real close to having everything ready for Jim's homecoming.

I still need to see the home health care orders the facility DR writes. I need them to include aide help so that someone else can struggle him up the steps to the shower the first few times. Want to be able to kitty snuggle nap at those times as Deb suggests, although I'm sure the first time I'll be on pins and needles, fearful the aid will drop my precious Jim package.

About all I need to complete the picture is a husband with a positive attitude. He MUST keep up with his PT, and he's been very bad about that in the past.

Jim and I are going to practice single rail stairs at PT today. I have rails on only one side of one step of the stairs in my house.

I have moved next Thursday's reevaluation for radiation therapy back ~ 5 days so that Jim is closer to self sufficiency before I leave him in the house alone for the several hours that appointment takes. I still have a surgeon follow-up next Thursday, but that should only keep me out of the house for 2.5 hours, not the 6 hours the 2 appointments on the same day would have required.

Thank you all for all you do for us!!

Jim's Getting Out of Dodge

As Deb would say.

St. Francis turned Jim down. His condition is not acute enough for their program. I knew that he would not fit with SF when I visited the facility this morning. SF rehab is working with patients coming out of ICU on ventilators or recovering from strokes to give them as much of their lives back as they can before they are sent to an outside setting, be it home, assisted living, nursing home, or whatever.

I didn't tell Jim about not thinking SF would be a fit for him. When I got to Shipley, the SF nurse was there reviewing Jim's chart. She left a message with his room nurse before she left (without speaking to Jim) that he was not a fit.

Jim started to take another dive into anger/depression when I said, basically: I made you a promise you would not be at Shipley at week's end, and you won't be. If SF won't take you, you are coming home and you are the only one who can stop it. I went to tell the social worker, but she and the head of nursing are out at training for 2 days. I told the head of PT, and he said he would inform those who need to know to make this happen. When I got back to Jim, he was looking even more anxious. I asked him what the problem was. He said he didn't think I would keep my promise, and that he is scared he might cause me problems or get hurt if he comes home. (Why didn't the boy listen to this before now?) I told him that until the discharge, he could change his mind, but that after that, he's in my care, come what may. (But I hope he knows that I will put his safety first.)

I started working this afternoon on trying to find a certified nurse assistance to watch Jim for 5 hours next Thursday when I have appointments with Dr. Cutter and with the radiation oncologist. I also started working on a cancer grant to pay for this "respite care."

We'll also need to work through Shipley to get an RN in for weekly blood draws and folks in for physical and occupational therapy. If ordered by the DR, those will be paid for by Medicare for an "appropriate" amount of time.

I went to Target to stock up on some needed "home patient" supplies. I also called one of our friends to move a bureau from a bedroom into the family room where Jim will be staying. I have to start setting his familyroom/bedroom up tonight.

Thanks to all who have provided such strong shoulders the last couple of weeks: here, email, FDMB PM, in person, and on the phone. Lordy, I really know I could do this if I had you all camping out in the backyard. Kind of like that Singular Network commercial, where the pack of people follow the cell phone user around? Absent that, we just have to trust that Jim and I can do it with your encouragement!!

Another Day With Lots of Tears

At Jim's care plan meeting yesterday, we announced Jim's exit. The Shipley group clearly came hunting for bear. Although they did take some messages about the unacceptable care to heart, they insisted that Jim continues to need institutional care because he is not yet independent and I am too weak to keep him safe.

Late in the afternoon, we saw Jim's GP. He too had the same message. It was at that point I saw the spirit just ooze out of Jim. Jim wasn't outwardly crying as I was, but he was clearly in the same place.

After thinking about Jim's comments, the Shipley group suggested a different type of facility. There is an acute care long-term facility inside one of the local hospitals (St. Francis) that focuses on rehab, not warehousing. Even though it's more of a hospital setting, the Shipley folks think that it will have less of the environment that Jim finds so objectionable--elderly people sitting around in chair all day holding their heads, mumbling to themselves, and waiting (hoping?) to die. I asked Shipley to have St. Francis do an assessment, and I plan to visit SF today for "acceptabiilty." We also will need to make sure that the Medicare rules for post-hospitalization rehab don't get violated and that Jim's insurance will pay for this.

The acute onset of Jim's liver disease was ~4 weeks ago. Jim expressed his concern to his GP with how long this was taking. The GP said that 2 more weeks of care might be needed. Jim said that was an interminable amount of time. I asked him to remember that I had been on my breast cancer journey for ~9 months now. That seemed little comfort to him.

The GP did say some encouraging things about how Jim was recovering. He said to dismiss the "end-stage" comments of the nurse. He said he would take more time looking at the >100 pages of records Shipley sent over to see whether he had any medical suggestions for more proactive care.

When we left the GP's office, Jim said that he didn't want any more visitors. He is weary of the embarrasment and joylessness that is Shipley. His GP said he would talk to the Shipley DR about putting Jim on an antidepressant. He seemed truly concerned about Jim's emotional state.

After I dropped Jim off at Shipley, I went outside, leaned against the wall, and cried.

We get to try to pull ourselves up by the bootstraps and do it all over again today.

How About a Day Without an Obstacle? (by V)

Sunday, Jim (after being advised by one of the nurses that it was his right), refused a dosage of Lactulose, the laxative that is the ammonia binder. When I heard about this, I called the nurses desk and asked to get a meeting with the facility DR. The person on the phone put me on with the Director of Nursing, Debbie, who seemed to have the sole purpose of keeping me from the DR. When she found out about the missed Lactulose, she started saying things like Jim is in "end-stage liver disease," is "terminal," and "will never be released outside of this or some similar facility."

Well little bitch Mama Venita went ballistic. Never has a DR said these things to us. I insisted more that Jim and I speak with the DR, which neither of us has since he was sent to Shipley 10 days ago. Debbie said she would do her best to make that happen on Monday, and I got off the phone, called Jim, and relayed the info to him. During our conversation, Debbie entered his room, started talking with him, told him I was lying, took the phone from his hand, and insisted to me that she had never said those things to me. I told her I was finished talking with her, but she wouldn't give me Jim back, so I hung up.

Jim called back shortly. He had suggested to Debbie that she was out of control and should go home. She said she was going to do that, but spent ~40 minutes outside his room ranting to staff about the situation. His room nurse came in later and told Jim that they were working on getting the DR to call me at 10am on Monday. I showed up in Jim's room with a pizza ~8 pm and stayed there watching him until 4 am.

(This facility's weekend care level is abysmal. Jim had asked for dinner to have a hot dog, french fries, and orange juice. They sent him fries and juice, with a note that there were "no hot dogs in the house." My. Couldn't they have asked him if he wanted something else they did have? The last cup of water he was given--they date the cups--was the 11-7 shift on Friday night.)

I got to Jim's room today ~9:15 am and got a call from the DR's nurse practitioner shortly after that. She explained that we misunderstand the nature of nursing home care. It is not their job to provide medical care; Jim was released from the hospital at an appropriate level of "wellness" and the job of the facility's nursing staff is to do their best to maintain him at that level. The primary purpose of the nursing home is to provide rehab to allow the already medically stable patient to return home (if that's the case) or to "warehouse" the terminal patient. She did not speak to the issue of Jim's diagnosis or prognosis, but then she didn't have his chart there.

Today's RN floor supervisor listened to my part of this conversation. She asked where I got the notion of end-stage and terminal. I said I would not name names but that it came from their nursing staff. She went to get Jim's chart. She came back and said she had just had a chat with Debbie (Director of Nursing, remember) and that there was nothing in Jim's chart about end stage or terminal, and that Debbie said she told us both yesterday that Jim is NOT end stage or terminal (yet another change of story). (Jim, who often can't keep his mouth closed in sensitive situations, told the floor supervisor that it was Debbie who told us this.)

Man, is this getting long. I'm venting.

Around 11 am, I went to see Dr. Boob. He said I'm healing well, but the drain still isn't ready to come out.

After that, I went back to Jim and told him we needed a plan for tomorrow's care plan meeting. The staff has invited the DR to join us there, so we finally get to meet/hear from her. I told Jim that I thought our plan should be for him to come to my house before the weekend, and he happily agreed. The weekend nursing care is horrible, and we can get physical and occupational therapy here. I just want to make sure he is medically stable to come home.

Last night, Jim agreed to get a new GP, and to use mine. But he can't see her until mid-October. He also can't see the GI specialist until that time. So I got a 30 minute appointment with his soon-to-be-former GP for tomorrow at 5:30 PM. I asked for enough time for that DR to sit down and discuss Jim's diagnosis, prognosis, and quality of life with us. I'll try not to vent about how the DR didn't take appropriate blood tests to see this coming down the road.

While I'm thinking Jim and I are in just about the worst spot anyone can be in, I spoke at lunch today with another resident of the home. He must be mid to late 70s. Early last November, his wife was admitted to Shipley after a hospitalization (I don't know her health issue). He had planned eventually to bring her home (he said as he had done in the past), but he had an attack of congestive heart failure the day after her admittance, and he ended up in the hospital for 2 months. Then he was himself admitted to Shipley in the room across the hall from her. I'm not sure when, but she did pass, and he told this whole story with red-rimmed teary eyes. I'm thinking--woah--we haven't even started to see the worst of what life can throw at you. He had no children to help with the transition, but did have a niece. He mentioned that he has always eaten green vegetable (broccolli, spinach) with vinegar, but that Shipley doesn't have vinegar. I'll be taking him a bottle of white wine vinegar tomorrow. I hope to find what more I can bring him; he's a sweetheart.

Sunday Update

We are both in our own little pain places right now, wrenching our way back to normality, wondering how or when that is going to happen/be able to happen.

For Jim, the way back seems to be medical. V's to do list for Monday includes a call to the GI specialist, because we aren't sure how much they are involved in his treatment right now. There also will be the Tuesday Shipley care plan meeting, where we can ask more about their medical approach. Sometimes, it seems like Shipley's usual focus on long-term care keeps them from being too involved with short-term rehab, which is our goal.

For Venita, the way back for now seems to be rest (which may keep on for a while as V moves into radiation). V only spent 3 hours out of the house today (chores and Jim). Jim seems to understand that V will be spending less and less time with him at Shipley so she can heal and get set up to get some work done. However, she is only a phone call away.

Which Jim had to use last night because he couldn't get his nurse to give him the proper PRN meds. But when V called the nurse, the nurse said she had to hear it from Jim's mouth, not V's. V asked for a "three-way" conversation with Jim, V, and the nurse, but the nurse refused. The problem was there are 2 meds that start with the letter A that are PRN for Jim--Ambien (a sleeping pill that seems to have given Jim nighttime hallucinations) and Ativan (an anti-anxiety medicine that Jim has responded well to). Bitch nurse wouldn't take V's word for it that Jim wanted the Ativan. Jim was able to get the right medicine because bitch nurse brought the charge nurse in with her, probably because on the phone V put up such a stink about the bitch nurse not working with her.

So, Jim's medical records now indicate his nighttime confusion is the Ambien. Fine. Isn't that the sleeping pill that the House of Representatives Kennedy boy said was his problem this year when he got involved in a DUI auto accident on capitol grounds and then ended up back in drug rehab/detox?

No spooks have visited Jim for two nights now. Both night were Ambien-free. And the first of those two nights, V slept overnight in the empty bed in Jim's room. V hasn't blogged the spooks stories. On Thursday morning, Jim explained to V that the facility had rounded up indigent people and put them on the floor of his room to sleep. Harmless enough. Friday morning, 3AM, V got a phone call from Jim. He wanted her to call the police. Several people in Shipley had been murdered, the facility suspected Jim, but they refused to call the authorities. V called the nurse, who was going to take Jim Ativan. Jim refused the medicine until the police were called. V convinced Jim by phone to take the medicine. V drove to Shipley and spent the rest of the night sitting by Jim's bedside while he slept. She was exhausted all the next day. Friday night, V slept in the extra bed, not really sleeping until about 6AM.

V didn't feel bad leaving Jim alone today. He can watch baseball and football on TV. Tomorrow, he'll be back into several hours of PT a day. (No PT on weekends.) V tried to walk him today, but he moaned and groaned about it. V needs Shipley's PT folks to help keep Jim on track. V's concerned Jim will lose focus and direction when he comes home.

My-o-my, I (Venita) hope there will soon come a time that I don't sit here and complain about the hands we've been dealt. Weatherwise, it's a beautiful day today. Clear crisp early fall day. Hot in the sun, perfect in the shade. I took Jim to sit in the courtyard at Shipley for awhile. And Max is here, pulling my fingers off the keyboard and licking them. I found some nifty fall-themed bowls at Target today to go with my new kitchen dishes.

Another fun point. Last night I gave Max his SubQ fluids. 100 ML. He was getting antsy with the skin stretch in his right side at ~50 ML, so I moved the needle to the left side. When all was done, Max looked all pumped up, like a football player. I got laughs from that.

Many good and fun things happening right now. We just need to think about/focus on those.

What Might We Need?

Today, Dr. Cutter told V she had heard about Jim's ailment, and she expressed concern for us both. She asked whether we had nearby family to help, and we don't. She suggested calling the Delaware Breast Cancer Coalition for help. V called this afternoon and spoke to a woman named Cathy.

Cathy listened to the whole story and expressed empathy. She asked what kind of help we might need, and I said I really didn't know what we needed or how they might help. Cathy gave the example of a single Mom of 2 kids who had a double mastectomy, and the Coalition was able gather volunteers to take the family meals for 2 weeks. (Dr. Cutter said the Coalition had unrestricted funds they could use to help.)

Cathy understands that we won't know our limitations until we see our ability levels when Jim comes home. We also presently don't know what kinds of home health care Medicare might provide, although we do know it will pay for three in-home physical and occupational therapy sessions a week (although we don't know for how long).

One thing V suggested we might need that Medicare won't pay for is someone to come in to watch Jim while V is out for DR appointments.

Cathy and V will touch base with each other early next week.

If you have any suggestions for the type of help that we might need and that it would be appropriate to ask for, please let us know.

Steve, Need IT Help

The "front page" of the blog got messed up somehow. There is a right hand column that has links to things, and those links used to live at the top of the page. Now they live at the bottom (at least on my screen--Explorer browser), making them essentially worthless. However, when I print the front page, those links are at the top.

The place that controls how the blog looks is in the "template" tab in the dashboard. Can you take a look to see whether you can fix this? Thanks!~~V

Should Have Had a Breast Weight Lottery

Venita didn't realize that breast tissue weight was one of the stats in the pathology report. V's post-biopsy nearly B breast tissue weighed 495 grams--slightly over a pound.

Only one lymph node was taken for the sentinal node biopsy. Final result--no metastatic disease. Because only one node was taken, V can have blood pressures/IV lines/blood draws from her left arm without the possibility of lymphedema.

The breast tissue showed no remaining evidence of invasive carcinoma or ductal carcinoma in-situ. There were mulitple areas of lobular carcinoma in-situ, but Dr. Cutter says that some lobular carcinoma in-situ (a pre-cancerous condition) is common for most women. Dr. Cutter said she would be concerned if there had been ductal carcinoma in-situ remaining; that would indicate the chemo had not been effective.

Dr. Cutter thinks the incision is healing well, but there's still too much fluid to pull the drain (currently about 120 ccs a day; have to get down to about 20 ccs). She will see V in 2 weeks for surgical follow-up, and then 6 months after that.

Time to call and start the process of radiation. It will only be necessary on the right side.

Thank You So Much, Annie

Annie went home this morning. Her help and her friendship were a Godsend, and we know that you also appreciate the time she was able to spend with us. Let's have a standing ovation for Ms. Anna Maria!!

V was a little tough for Annie to keep in line. V sometimes wanted to do more than she should. That's how V is and that was frustrating for Annie (and for V). Annie was very good about keeping V on her meds. She also was there whenever V crashed from doing too much.

Thank you Anna Maria. We really appreciate you being here for us. More than you know!!

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Today is Jim and Venita's 3rd wedding anniversary. V went to see Jim at lunchtime and stayed 3 1/2 hours. Jim was in the dining room when V arrived, and she looked in on him though the window between the hall and dining room. A sudden huge smile on his face! V loves to see Jim respond so positively to her.

Jim is getting less confused. His confusion is called encephalopathy and results from increased blood levels of ammonia, a toxin that his ailing liver is unable to process. He is being treated with Lactulose, a powerful laxative that acidifies the stool and thereby traps ammonia and drags it out of the body along with other fecal material. The goal is for Jim to have 2-4 loose bowel movements a day. Jim eventually will be on a maintenance dosage of Lactulose, with a goal of 1-2 loose bowel movements per day.

The problem is that Jim is not having loose stools; he is having explosive, unexpected, watery stools. (Yes, it's tough sharing these kinds of details with whomever cares to read them on the Internet. But this is one way for us to vent and a way for us to help others understand.)

V has spoken with a number of folks in the Shipley SNF management, and Jim's care is getting better. They understand the embarrasment and distress that Jim is having over the poop problem, and are working at getting the floor staff more on board with dealing with Jim with sensitivity. They also are trying to anticipate the timing of the explosions vis-a-vis giving Lactulose/eating food/Jim's activity schedule so that Jim as close to the bathroom and not in the middle of something else important (like PT or a meal) when the problem occurs. The management also seems to now understand the importance of communicating with V about Jim's status. V is the alpha female and bitch Mama for Jim, and someone has to deal with V if they are hurting or not helping Jim.

Next week Venita has a "care plan" meeting with the Shipley SNF management about Jim.

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As for Venita (this is a blog about her breast cancer, isn't it?), she has been feeling good under Annie's care. V wanted to wean from pain medicines, so she took nothing this morning. Big time pain set in when she was visiting with Jim, so she's now back on Percocet. She has a post-surgical appointment tomorrow with Dr. Cutter, the breast surgeon. A friend, Ellen, will be driving her there. V has a drain, but unfortunately, it has not slowed enough for it to be pulled tomorrow.

V also has a post-surgical appointment next Monday with Dr. Boob. Fingers and toes crossed that the drain goes then.

At discharge on Saturday, Dr. Boob said everything looks OK with him to start radiation therapy on the right side. If Dr. Cutter also is OK, V will call to set up the intake appointment for radiation.

Jim's Confusion is a Nightmare

Jim didn't remember that V had a surgery, and got angry with her for not showing up to visit with him. Then he thought V had been in the hospital for 3 days, and got angry with her for not explaining the reason for the extended hospital stay. Jim wants to come home because Saturday night his nurse left him sitting in his feces for a full hour. V has so little energy for dealing with this.

Today, V will stay home. She will try to reach the facility DR by phone. She will try to find out what kind of lab tests have been done and what the results have been. She will try to find out why this GP has not contacted Jim's GI specialists.

V's pain meds are not knocking her out like before. More than likely the stress of Jim's situation. She needs some solid sleep and is not getting it. V's so thankful that Annie is here to help, especially to feed V when V isn't hungry.

Take care all.

~~V

Venita's Home

Surgery for the left breast mastectomy/expander implant finished around 4PM. V had alot of pain/disorientation/dizziness in the recovery room. She was taken to a room on the surgery floor of the hospital around 5PM. (Not the 23-hour surgical ward; that was not available last night.)

Last night's pain was more severe than what she remembered from the first mastectomy. She thinks her pain threshhold has been lowered by the chemo. She was asking for percocet and morphine constantly. She couldn't move anything on the upper left side without pain. She would try to fall asleep, her left arm would spasm involuntarily, and the pain would bring her back awake. Finally, she asked for a sling. That helped to immobilize her left arm so that she got about an hour's sleep.

The anestheologist put V's IV's line in her foot. That's supposed to be the location for all future pricks and sticks because of the possibility of lymphedema in her arms from having had lymph nodes removed. But, using the feet seems to be an unacceptable solution because V's veins there are SOOOOO tiny. May need to go for the neck.

V's maid of honor Annie is here taking care of her. V's is indeed being pampered. She got to choose the dinner menu and Annie is out at the grocery right now. Annie also offered to clean up some of the mess in V's office, and because Annie and V are employed in the same field, there's a good chance V will take Annie up on the offer.

Jim has become an issue. Yesterday, 2 hours before V was scheduled to report for surgery, Jim called to say that he had been abused at the nursing home and wanted to come home NOW. V didn't have time to get to the bottom of the "he said/she said" thing, but she went to the home and tried to calm Jim down and asked him to behave himself. She also asked the nurse to ask the DR to order labs to see whether Jim's ammonia levels are off again.

After her surgery, V called Jim, and his confusion continued. He was unaware that V was in the hospital. V called the nurse's station and was given to Jim's nurse, who was quite short with V (or at least it seemed that way in V's anesthesia-fogged state). The nurse said that Jim's labs were completely normal and that he was not at all confused. She suggested that V should call Jim for reassurance that he was fine and not confused; V told the nurse that had just been done with a different outcome; and.....boy the whole thing went downhill from there.

This morning, V called Jim from the hospital but he didn't want to talk to her because he was eating breakfast. When V got home, there was a message on the phone from Jim saying that this was "unsatisfactory" and that he wanted to know where V was and why she was not answering the phone. V. needs to get this straightened out, but not today. Today, she's popping Percocet on top of Ibuprofen and Acetominophine and hoping to get some cat-snuggly sleep.

Jim's Settled/V's Day

Yesterday, we got Jim out of the hospital and into Shipley Manor Health Center, a medicare approved skilled nursing facility (SNF) to keep him safe, healthy, and rehabbed while V goes through her surgery. At the hospital occupational therapy, Jim and Venita had practiced getting Jim into and out of a car. So when the real deal came yesterday, we did it with flying colors. V was so proud of Jim!!

Already today, V has had a phone appointment with the vet (who is an hour drive away) about being more aggressive in treating Max's CRF. V will be starting Max on fluids soon. She needs to chat some with the folks on the CRF (Chronic Renal Failure) and CRF/FD (Feline Diabetes) boards about some things the vet said. That will come much later.

In 2 hours, V has an appointment with her GYN. V is supposed to get PAP smears every 4 months because of cervical displasia. This one is long overdue, put off because of the chemo. Along with the PAP, she will get a colposcopy, which she hasn't googled, but understands to be something of a mini biopsy of the cervical tissue.

After that, V will head out to see Jim and finish the paperwork for his admission. That package had to be 2" thick. All V signed last night were authorizations for physician treatment, labs, and medicines. Also, last night they gave V a list of Jim's meds, and she had to check the insurance company's formulary to see whether they would cover those meds. For many of them, they only cover generic. Why does life have to be so difficult and confusing when folks get old and have less brain power and energy to fight the system. This really sucks, not just for us but for all older folks. We don't understand the "universal" healthcare that other countries have, but we know that healthcare coverage in the US needs alot of improvement, and some universality. We are very lucky to have excellent coverage because of Jim's military career. But we still see what happens to us and to others.

Lungs Still OK/Jim Update

V had another lung CT scan and consult with the thoracic surgeon yesterday. He said the lung mass has shrunk measurably in the past 2 weeks. Definitely, he says, not cancer of any kind. Need to repeat the CT scan in 2 months.

The interesting news is that although the CT scan clearly shows the lungs of a long-term smoker, the pulmonary function and blood gases tests for the most part show excellent function. That still doesn't explain, though, why V continues to have trouble breathing. Maybe it's just a chemo side effect thing.

Jim continues, slowly, to improve. Good chance he will go to the transitional facility today. The final diagnosis is alcohol-induced hepatitis (liver inflammation), probably with some cirrohsis thrown in. The GI doc said if the cirrohsis is mild, the liver can regenerate over time. She said that it may take 6 months for Jim to get all the way back.

Ms. Giz!!

Darlin Gizmo. Mom's kind of freaking out right now, missing Poppy (the fat man, who BTW I don't like because he gets between Mom and me), talking to herself about whether she should go out to Wawa for a pack of cigarettes, so I have a chance finally to get back to you.

Ms. Giz, you are Greta Garbo. I am Audrey Hepburn. I am petite, oui, and I also am often silent. I usually let my body do the talking. Sure, there are times I whine at Mom to let me into the dry food room, or chit chat with Poppy, who does talk back to me. But I don't think I can "vocalize displeasure." I communicate mostly with my butt and tail, telling my people how pretty I am and that they can come pet me now. I don't talk, with voice or body, to the boys.

We may just be too different in how we go about these thing, dearest Giz. Can you think in Ms. Hepburn terms and come back with some new ideas? I thought I had Lesson 1 down, but last night grumpy Max ran me off the bed. (Asshole.)

Love you, darlin Giz.

Lily Belle

I Feel So Sad Right Now (by V)

Could it be because Jim's on his ~9th day in the hospital for liver failure and when the DRs tonight told him he was not medically stable enough to go to a transitional facility, he started tearing up? (He tried to explain to the DRs that he would get rehab there, and he would be able to sit outside there. God, that broke my heart.)

Could it be because my DRs are transitioning me from Paxil to Effexor and I'm either still in the "not quite there yet" phase, or the Effexor doesn't work for me as well as the Paxil did?

Could it be because I have another CT scan and visit with the thoracic surgeon tomorrow to follow up on possible lung cancer, and I'm scared that the surgeon may change his mind that the spot in my lung isn't cancer?

Could it be because if the thoracic surgeon doesn't want to biopsy my lung, I will be having the breast surgeon take my left breast off on Friday?

Could it be because my right breast expander implant seems to have failed and is deflating, and hurts to boot?

Could it be because of most or all of these things....and because Jim isn't around right now to hold me while I am so scared and hurting? (I do miss him so much.)

~~V

Status on us Both

Another attempt at being brief.

Jim's still in the hospital. His liver functions continue to get better and then have a slight setback. He is clear minded most of the time, but is very weak in his voice and body.

He is weakly progressing at physical and occupational therapy.

V spent yesterday afternoon checking out 3 nearby transitional facilities. She made her rankings and took the info back to report to Jim. In V's absence, the social worker had tried to have Jim transferred to one of the facilities (the one V ranked dead last). Jim refused to go, and in the middle of the debate the GI DR showed up and told the social worked that Jim was not medically ready for release.

By the time V returned, Jim was being given IV magnesium. V wanted to take the social worker's head off, but she was gone for the long holiday weekend.

DR did tell Jim that he might be ready for discharge Monday. The problem with that is that none of the admissions officers are in the facilities on the holiday Monday, and the one facility we want won't have a bed until Tuesday. The admission officer in that facility is going to take 2 women who are each in a semi-private room with no roommate, put them together in one room, and give Jim the resulting empty semi-private room. Have to talk the DR into a discharge delay until Tuesday.

V has a tough schedule for next week just for herself. Will have to fit Jim in as possible:

Tuesday AM, CT scan and reconsult with thoracic surgeon
Wednesday AM 8 month followup with endodontist
Thursday AM Consult with vet about Max's CRF
Thursday PM PAP smear and coloscopy
Friday late AM show up for surgery

V also is trying to get in to see Dr. Boob. There seems to be a leak in her right breast expander implant, and that implant wasn't due to be changed out until around January. We will need a resolution before V can start radiation. (One cannot expand irradiated tissue.)

So Tired (by V)

This will be cryptic and brief.

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

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

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

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

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

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

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

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

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

Jim Seemed Better Today, and Other Things

Jim seemed much better today. He was still weak in body and voice, but his eyes were sparkly and his smile was strong when I first saw him.

I got there at 10am and (maybe because it was that I complained yesterday) he had been fed, bathed, and had a fresh bed. He looked great!!

Jim and I had a nice quiet morning. He wanted to read the sports pages, so I went a couple of places nearby in search of the Philly papers. The GI specialist showed up shortly after noon and said that Jim's morning blood draw showed that his values continue to decline, so even more meds are being ordered. After the specialist left, Jim said the guy is just a pessimist. I laughed.

I just can't keep up with all the meds. At this point, I just have to trust.

I failed to ask the DR, but thank God the nurse did, and the DR ordered physical and occupational therapy. What's the difference? we wanted to know. PT teaches Jim how to walk, to use a cane and walker, to walk up and down steps, to get in and out of bed. Occupational therapy teaches Jim how to take care of his daily needs: dressing himself, getting in and out of the shower/bath, fixing food.

I was so scared this morning, thinking I would find Jim either significantly improved or significantly worse (and maybe in ICU). I was so happy (and teary) when I saw he was stronger.

Here in the Wilmington area, there are three hospitals. Two (Wilmington Hospital and Chrisitiana Hospital) are owned by one corporation: Christiana Care Corp. Jim is in Wilmington Hospital (which is downdown) and I have been getting treatment at the cancer center at Christiana Hospital (which is well south of town).

Tomorrow, I get a full scale pulmonary function test at Christiana Hospital at 10:30. At 12 noon, Jim is being transported from Wilmington Hospital to Christiana Hospital for a pericentesis at 1PM. That is the procedure where a radiologist uses a syringe to draw the fluid off Jim's liver.

(And I'm thinking, KISS! After my right breast mastectomy, I kept draining. For weeks, I would drive to his office and Dr. Boob would draw off that fluid with a little "tap-tap-tapping" to locate it. What's with all the ambulance from here to there and back and a radiologist and a fluorscope to find the fluid. OK, maybe I'm wrong and sticking a syringe into the belly near the liver is different, but my neighbor nurse says she often had done pericentesis at bedside.)

DRs are starting to mess with my schedule for next week, surgery week. On Tuesday, I had been set up for a PAP and coposcopy in the AM, and a lung CT scan and consult with the thoracic surgeon in the afternoon. (That consult was to again evaluate what the heck is going on in my lungs. May I say, I continue to improve in my breathing.) Now the surgeon wants me in his office in the morning.

I have pushed this PAP/colposcopy forward 2 times, trying to get it past chemo but before surgery. (This is the situation where I keep getting abnormal PAP results, and cervical cancer is nothing to sneer at.) Now I have to try to see which office blinks first on rescheduling, but keep both appointments for next week.

Thank you all for your thoughts/prayers and best wishes.

I'm Getting Scared Now (by V)

The GI DR gave us an update yesterday. Confirming what I had observed about Jim's reaction and behavior, he said that the blood tests showed that Jim's condition had worsened over the weekend and now is quite serious. The liver continues to fail, and now the kidneys are having some trouble. The DR put Jim on cortosones (prednilosone) for his liver and something else for his kidneys. Of course, Jim continues on various vitamin and enzyme supplements and gets medications for his confusion/anxiety.

I thought Jim's confusion Sunday was bad, because it was combined with anger/refusal to cooporate with the hospital staff. Monday was worse. Jim was confused, but it was like he had given up, like he was saying, "I don't know why you want what you want, but I'll do what you want." Maybe I shouldn't have told him the rule was "do what the staff wants you to." It was so sad (broke my heart) to see such a strong man broken down so much. God, I love him.

The GI DR indicated that right now Jim's prognosis is uncertain and his timeline is openended.

I had significant trouble with the level of care in the hospital yesterday. There were no nurses aids available to help with Jim and the RNs were overwhelmed. It was completely unacceptable. I was doing things that I should not have been doing to care for Jim. I lodged a complaint with the head of nursing, like that's going to do anything.

I woke up during the night in such pain from pulled muscles and my neuropathy that I had to take Percocets.

I may have to reschedule my breast surgery over this. God, I am so glad that my friend Annie has agreed to come help with my surgery. That is one lifeline I am holding onto right now.

Please thoughts and prayers for Jim. If you want to send him a card, you can mail them to my address, 503 Ruxton Drive, Wilmington, DE 19809.

I don't mean to be harsh with folks, because I know they are just showing care, but I've got about 6 of Jim's friends that want me to call with daily updates on his care and condition. I can't do that much. Just as I created this blog for updates about my cancer, I need to find a solution for updates about Jim. Maybe I'll try to find one or 2 people to talk to and let them send the word out to the others. I'm just concerned about the telephone game errors that can happen. (These are folks that for the most part are not computer literate and don't know about the blog.)

Another solution might be to post a notice each day or two on the bulletin board over at his drinking club. Yes, that might be the ticket.

Cats are fine. I am fine, although pretty tired and sore. No work-work, no yard work, no outside the home chores getting done. But I am big time loving on my husband, which is the most important right now, even though he likely won't remember it.

Thank you all so much for the thoughts and prayers and cards and such you have sent to me. Love you!

Update on Jim

Sunday was Jim's 3rd day in the hospital.

Since our first report on his condition, he's had a doppler ultrasound and a lung/abdominal/pelvic CT scan. He continues on vitamin supplements and Lasix, a diuretic. The DRs are focusing on alcohol-induced cirrhosis. On Sunday, the GP said there is no evidence of tumor. Jim also had eight vials of blood drawn and the results showed he was low on magnesium, which he then received in an IV drip.

Jim's new roommate at 3AM Sunday morning came in with seizures and disorientation from alcohol withdrawal. The noise and commotion left Jim very confused and agitated, and the nursing staff gave him a tranquilizer, Ativan.

Jim's confusion continued later into Sunday morning. He refused to work with the nursing staff telling them, Venita was coming to take him home. When V got there at 10AM, the start of visiting hours, the room's LPN took V aside and explained how Jim was being uncooperative and that she could not finish cleaning his bed and gowning him for the day. (Many people are intimidated by Jim's strong-willed manner. This LPN looked like a deer in headlights.) In the room, V found Jim in street clothes with his belongings on the table, ready to be packed to go home.

V put Jim's things away, and got him to allow the staff to finish their morning chores. It took a couple hours to get him settled down and for him to understand that he was being kept "in jail" for a few more days. His spirits lifted as the day went on. V was disappointed that the Phillies/Mets baseball game was cancelled Sunday afternoon; that would have provided Jim a nice diversion and "grounded" him in a bit of his own reality.

(For those who don't know, Jim is a huge Phillies fan and went to the team's Spring Training in Clearwater, FL, for the entire month of March for maybe eleven years straight.)

Apparently Jim saw a gastroenterologist before V got to the hospital. Jim had no memory of that visit and his chart showed no notes except "continue treatment." In the morning, a urologist visited. The nursing staff had tried to put a bladder catheter into Jim on Saturday, but had blown the balloon in the urethra, not the bladder. Jim had been bleeding since that little misadventure. The urologist said Jim was OK but that the bleeding would continue for a few days. The hospital based GP visited in the afternoon. He discussed the magnesium deficiency and the current diagnosis.

When V left for the day at 7PM, Jim was in high spirits, although he had been drifting in and out of sleep most all day. He ate quite a bit of both meals served while V was there. He was having some visual hallucinations (he kept seeing movement in an impressionistic print of flowers on the wall), but those visions were not agitating him. V made sure Jim understood that the rule for the night was "do what the nursing staff says" and let the staff know they could call her any time if she needed to talk to and calm Jim down.

Yep, Venita is whipped. Continuing problems with tingly feet. She made plans with the nursing staff to be into the hospital Monday morning at 7AM to be able to speak with all of the DRs. If Jim progresses at the rate he is going, he will likely be discharged from the hospital around Thursday. Still a question of discharge to where. Jim is now refusing to consider a transitional facility, whereas V believes that (depending on Jim's condition), that may be a better idea than coming home with her. The week after next, she has appointments/procedures prepatory to and, of course, the surgery.

Sigh. Such speedbumps on the road of life.

Now it's Jim's Turn, Unfortunately

V decided that if Jim was too sick to go to the thoracic surgeon with her, he was sick enough for her to get very serious about him seeing his GP ASAP. She got him in Thursday afternoon. A couple hours before the appointment, V was running Jim through the shower (his dizziness makes it dangerous for him to shower alone), and she found he was severely jaundiced.

First words out of the DR's mouth two hours later: why are you so yellow? He did some initial evaluation, including for disorientation, which Jim had exhibited earlier that morning, and scheduled him for a direct admission to a local hospital. GP diagnosed Jim as having liver disease (although he used the scary term liver failure).

Jim and V came home and waited and waited and waited. Finally got a call Friday morning to come to the hospital "immediately." Rushed down there, and in the morning only got an initial consult with a hospital-based internal medicine practitioner and a blood draw. Had to wait until 4pm for a room and 4:30 for an abdominal ultrasound. A gastroenterologist (GI DR) showed up around 5:30.

Jim's primary symptoms are-

1. Jaundice (he looks like a yellow post-it note);

2. A distended belly that means fluid is accumulating around the liver (V thought his shirts had been shrinking) (OK, you who know Jim will say he has had a "pregnant" belly the last who-knows-how-many years, but he had been slimming down lately);

3. Darkened urine from the presence of bilirubin, which results from the breakup of the hemoglobin of dead red blood cells (normally, the liver removes bilirubin from the blood and excretes it through bile); and

4. Spider veins on his belly.

His possible secondary symptoms (present and past) are dizziness, queasiness, inappetance, edema (swelling) of the lower legs and feet, skin rash, and difficulty breathing. He has no abdominal pain.

From the initial blood and US tests, and a health history, the GI DR has initially ruled out liver cancer and focused on a cirrhosis (advanced scar tissue) through chronic alcohol use. However, her practice (there will be 2 different GI DRs the next two days) will continue to consider these probable diagnoses--

1. Hepatitis, which is an inflammation caused (most likely in Jim's case) by viruses or poisons;

2. Cirrhosis, which can be caused by viral hepatitis, alcohol, or other liver-toxic chemicals (including some of the prescription drugs Jim may have been on recently, the GI DR needs to check Jim's records with his original GP); and

3. Cancer of the liver.

Other possibilities that the GI DR mentioned that V didn't quickly find mentioned (or discernible) in the wiki article on the liver and liver diseases were--

1. Vascular (a clot in a vein);

2. Fatty liver (which despite having read about it on the FDMB, V still doesn't understand);

3. OTC drugs, such as Tylenol.

Tomorrow's procedures will include a different kind of US (doppler) that will look for vascular involvement, more bloodwork (to look for iron overload or other metabolic causes), and a drainage of the fluid in his belly (with culture and analysis of the fluid).

Starting tonight, Jim is getting a multivitamin and folate and thiamin, B vitamins. This is because if chronic alcohol use is the cause, his system is generally run down and depleted in many vitamins, especially the Bs. He also will be started on a low-salt diet (which is not that far from how he eats now) and a diuretic (water pill).

A social worker came in to talk about the possibility of institutional care after Jim's discharge from the hospital. (Jim will likely be in the hospital until Monday night or later.) Jim and V didn't think it was necessarily a bad idea for Jim to be in a facility for a few days to a week after his release. Given where V's health is right now, she can't give him the help (or patience) he needs. (The nurses/techs at the hospital are being so patient with Jim's wobbliness. V. just sat there in wonder today, because she doesn't have the strength to do that.)

V did look at the history that Jim's GP sent to the hospital with her. Jim has been going to his DR for annual blood tests since 1996. Interestingly, the only tests that have been done were cholesterol and PSA (for prostate). Nothing in the way of a CBC or other "full blood value" testing. (V has no respect for this DR. He used to be her DR, for a short time. What the hell is this all about for a 65 YO person?)

After more than 13 hours on her feet today (or sitting in a chair with her feet on the floor), V's feet and legs are dying. She almost fell getting out of the hospital. Her neuropathy is bad enough without putting constant weight on it. Hopefully, that chemo side-effect will be gone soon.

It's Good News

The thoracic surgeon does not think the spot in V's lung is cancer. He said this spot has become smaller and more consolidated from the June CT scan to the August CT scan. He showed V a side-by-side comparison on his computer screen. In June it was a large diffuse area of "something." In August, it was a smaller, dense area of something.

He's not certain what the something is, but he suspects we are watching the formation of dense scar tissue from the infection/inflammation that V had this June (the fever that put her in the hospital).

A lung cancer tumor, in his experience, grows larger over time (rather than shriking and consolidating as this something has), and lung cancer does not change size as quickly as this something has. The surgeon said a malignant mass this size would take several years to develop, while V's something has shown up with remarkable speed. (He also confirmed what Dr. Chemo had said that it wasn't metastatic breast cancer.)

The surgeon wants to do an extensive pulmonary function test and another CT scan a couple days before September 8 (the scheduled date of the mastectomy/reconstruction). Depending on the findings then (such as the rate and nature of the change in the mass), he might preempt Dr. Cutter and Dr. Boob and take the operating room time that already is booked for V to do a procedure (maybe a needle aspiration). He doesn't want to piggyback on the mastectomy because he said V shouldn't be under anesthesia as long as it would take for all three procedures. He did agree that diagnostics on the lung do take precedence, but that the mast/reconstruction won't impede what he has to do because he goes in through the back or the side.

V asked whether someone was going to call Dr. Cutter to let her know what was going on and that she might get pre-empted in the OR. (Those following the blog know that Dr. Cutter is a ball-busting bitch). The thoracic surgeon smiled and made a comment that showed that he had no love lost for Dr. Cutter and that he would take care of her. I guess his livelihood does not depend on referals from Dr. Cutter.

Jim wasn't able to make the appointment. He's very weak and wobbly and almost disoriented. His eyes look jaundiced. V tried to get his GP to see him tomorrow, but no openings. V will keep him at her house for a few days with intent to take him to the ER if he doesn't do some snapping out of it.

Thank you

So many of you have contacted us about the latest development with V's lung. Thank you for your electronic/telephonic/snail-mail/in-person hugs.

We see the thoracic surgeon today. Wish us strength and lots of Kleenex.

Thoracic Surgeon Appointment

Wednesday, 3 PM Eastern. No procedures planned; just talking. The office understands the urgency of coordinating with the 9/8 mastectomy/reconstruction surgery.

Thoracic surgeon is Dr. Bruce Panasuk (pronounced Pan-A-SUCK). We still need a nickname. Maybe Dr. Chest Sucker? What else? Cindy? Charlie?

Nurse neighbor Mary brought V a hummingbird feeder yesterday. Mary hung it on a shepherd's hook outside V's kitchen/FL room windows. She said it may take up to a week to attract the birds. V was on Mary's back deck this AM and her feeder there had ~ 4 hummingbirds at one time. They were making bird noises and resting on the feeder holder from time to time. V didn't know they did that.

Nice weather today. Low humidity. Crisp, clear. Almost springlike.

Jim went home after a weekend here of eating and holding. He says he will call the DR today about his dizziness/inappetance. He is using the cane V borrowed from one of his neighbors. It makes him much more sure footed.

We are getting over the devastation.

A Meaningful E-Mail

Before the possible lung cancer scare came up, Venita received an e-mail from a professional colleague that profoundly touched her. V asked the writer for permission to publish her comments here (anonomously) and the writer generously agreed.

V,

We don't know each other very well, but still I wanted to write to you.

I have been monitoring your blog ever since I found the link in your return address on your [business]emails.

I had heard that you had breast cancer from colleagues, but I naively thought that breast cancer was an easily treatable condition. I've never been close with anyone with the disease, so I thought, based on popular media, that breast cancer was usually found early and easily treated. What an eye opener your experience has been! Breast cancer may or may not be identified early. And the treatments are torturous.

I've read blogs of cancer patients before and been fascinated by the issues that arise in those situations and feel great sympathy for those afflicted, but because I haven't met them, so I have always felt a little detached. I don't feel detached with you. We haven't spoken many times, but I feel we are similar in many way--[our profession], a love of cats, a focus on the work goals that others don't always understand, a need for order in life, and enjoyment of a glass of wine at the end of a day.

I thank you for being so open in your blog about your experiences with this disease. I'm sure that everyone who has read it has made a more serious commitment to monthly breast self exams. I was generally very lax about self exams, thinking that annual mammograms were enough. I've been dissuaded of that opinion and, of course, conveyed that to my family and friends.

If I were in your shoes (and able to emotionally detach from my situation, which of course, you are not), I would try to focus on the things in life that I enjoy most. Yes, you have surgery and radiation treatment (and who knows what else) ahead of you, but there still must be things on a daily basis that give you pleasure. I for one enjoy seeing my cats greet me when I come home from the work day, for example. And I enjoy seeing the birds cavort in the yard, especially the hummingbird feed at the feeder. There are always enjoyable things in your life. Hold on to them.

V, you still have a long row to hoe, but you will get there. Hang in there. I see you have lots of friends who how care about you based on comments in your blog, but don't forget there are others who are less familiar with you that too care very much about your success against this disease.

I don't have anything profound to say. I just want urge you to keep a positive attitude.

You haven't mentioned how the cats react to your various medical procedures. Are they comforting and snuggly when you feel weak? Or are they put off by the hospital smell? My experience is that cats are aloof for a day or two after hospital visits. But then they have only a short term perspective on the world.

Best of luck to you in your next series of treatments.

Still Can't Catch a Break

V was in the midst of writing a blog update on her cats, on Jim, and on her 3 DR visits this week, when she got a call from Dr. Chemo. Now all that other stuff seems unimportant.

V had a CT scan of her lungs Thursday. Dr. Chemo said that what on X-Ray looked like a pulmonary infiltration (which V has come to learn means “something somewhat minor but we don’t know exactly what it is”), now with the CT scan appears more solid. What does that mean? Dr. Chemo said it’s a 2 cm area that’s not metastatic breast cancer but that may be lung cancer. This is in the upper lobe of V’s left lung.

Dr. Chemo wants V to consult a thoracic surgeon next week. The thoracic surgeon may do a needle biopsy or a bronchoscopy, where they go into V’s lungs with a scope and take a look around and excise tissue out for pathology. There is some basic information about diagnosing lung cancer here.

Some may ask how lung cancer can occur during chemo for breast cancer. This is just a guess. Chemo is targeted to a particular kind of cancer. The chemo for breast cancers may not affect lung cancers.

Any name suggestions for the thoracic surgeon? Cindy? You’re among the best at these names, although V’s former husband did come up with PT Bruiser for the physical therapist.

We’ll let you know how this goes. For the time being, we are devastated.

The left breast mastectomy had been rescheduled for September 8. Dr. Chemo said that the spot in the lung takes precedence.

Feeling Scared (by Venita)

I was going to put this into an email to a friend who wrote to offer support.

I decided this was not something with which to burden a single person, so I decided to put it here. I'm not asking for sympathy. I'm just asking that you understand that all my "I'm so fine" talk is sometimes a smokescreen that hides my fear.

It was hard when I recently found out that my cancer was staged as advanced. I have no self-image problem with having both of my breasts removed. I am troubled that the surgery to remove my right breast and some axillary (armpit) lymph nodes has left me with a reduced range of motion in my right arm, which is my primary arm. I am troubled that something (maybe the pneumonia or maybe the chemo) has left me with a reduced breathing capacity.

I wonder what kind of disruption (lifestyle and side effect) the upcoming seven weeks of radiation will bring.

I want all this treatment crap to be over, and I am fearful of metastatic disease showing up during or soon after treatment. Breast cancer is known to move to the bone, liver, lungs, and brain, and there is no “cure” for that; just more slash/poison/burn treatments. I don’t want to go there.

So Much News

Venita's Birthday

Today is Thursday, August 10, 2006, V's 54th birthday. She gets to celebrate it out without her final infusion of chemo (see the previous post). This was slightly disappointing because Cindy (an FDMB member) was going to come up and play her cello in the chemo room for a couple of hours.

Family Visit

V's brother Les and his wife Donna left Tuesday after a week-long visit. It was fabulous to have them here.

Les has MS, and he and V were able to share the trials and stumbles of having peripheral neuropathy. Unfortunately, Les's neuropathy is permanent whereas V's is chemo induced and she is expected to fully recover. Because of their troubles walking and the heat for most of the visit, we did no "fun" things like the zoo or gardens.

As Donna likes to say, Les is handy as a shirt pocket. Despite his MS, Les did numerous jobs from V's honey-do list. Among his achievements was the installation of two ceiling fans. The one in V's bedroom (with a remote control) is just the ticket for a woman with chemo-induced hot flashes.

We ate like crazy during the week, which made V very happy after her recent bouts with inappetance and mouth ulcers. Donna is a fabulous cook. Les is on a diet for his MS that involves little to no fat and no red meat. So while Les would eat main courses like crab legs, the rest of us would get a little of that together with our red meat. Yum.

The only downside of the visit was V's strong attraction to Les and Donna's cigarettes. But she held strong, and today marks 5 months of being smokefree.

Ennis's Diabetes and Max's CRF

Ennis and Max saw the vet last week.

Ennis is currently at diabetic blood glucose levels. Vet confirmed that Ennis has severe periodontal disease. He had a dental cleaning with several extractions in April, and there is nothing right now to "dental." Vet said some of his patients with this condition need periodic antibiotics (maybe quarterly) to push down the infection. Ennis has now had a 5 day course of ABs. That has reduced his BG levels, but he is still on insulin.

Max is diabetic, but not currently needing insulin shots. He has advanced from "early chronic renal failure" 6 months ago to god-awful official CRF. Urine specific gravity 6 months ago 1.030; now 1.017. Urine draw from cyscocentesis was almost clear. He's lost another 1.5 lbs in the last 6 months; down to 12 and 1/4 pounds.

Venita was told about early CRF 6 months ago, given certain meds, and told to change Max's diet to lower protein and phosphorus. He's been taking the blood pressure medicine regularly (and he did have a reduced BP), and V only got with the potassium gluconate and the derm caps liquid (fatty acid) supplements a few months ago. She bought the new food 5 months ago, but never pushed it because she got caught up with her own health problems. Vet said no subQ fluids yet.

Venita will be "consulting" with Julie because her diabetic Smokey also has CRF at about the same stage as Max. V chatted with Julie today and she has done alot of research on CRF foods and fluids.

Surgery Scheduled

The left breast mastectomy/expander implant is currently scheduled for September 22. That date was selected based on the expectation that there would be a chemo infusion today. Without that, the surgeons may be able to move the surgery back two weeks. V will try to remember to call today for a reschedule.

CELEBRATE!! Done with Chemo

V saw Dr. Chemo today for him to write the orders for her final chemo.

After he listened to her woes about her severe peripheral neuropathy, he said they had poisoned her enough. To do more would put Venita in a wheelchair.

No more chemo. It's over.

Will soon post about all the great things the last week with V's family visit, etc.

Mouth Ulcers, Family Visit, Ennis Update

Mouth Ulcers

New side effect with infusion 3 (of 4) of the Taxol. Mouth ulcers. Venita had these with the earlier chemo, so she has tools in her toolbox, but unfortunately those tools are not very effective.

These mouth ulcers differ from the earlier ones. Those were swollen glands like from tonsilitis or the mumps. These ulcers are open sores like from chewing on your cheeks and tongue. Venita's face appears swollen.

Venita is taking an antiviral for the ulcers, and hoping that the Dilaudid that she is otherwise using for the bone pain will minimize the mouth pain. She will have to call the oncologist on Monday, and likely take a drive down there. Sigh.

Family Visit

Venita's brother Les and his wife Donna arrive on Wednesday for an almost week-long visit. We so hoped the weather would have cooled down some so that we could do some outdoor things, like the Philly Zoo. That may still happen, but we are looking into alternatives, like the NJ State Aquarium in Camden, across from Philly on the Delaware river.

Of course, Venita has her ever-ready "to do list" in case Les and Donna would like to do some chores around the house.

Cooking for and feeding this group is going to be a challenge. Venita has little to no appetite. Les is on a no-to-low fat diet, including no red meat. Jim's stomach is completely screwed up with worry about Venita and not being fed well. Donna is trying to support Les's diet, but really, if you don't have to, how many broiled fish/seafood and fresh fruit dinners can one eat?

Venita put Les and Donna on notice: Venita will cook the first night, but after that, they can have the keys to the car to go to the grocery/butcher/Trader Joe's/farm stand.

Venita and Jim are very excited about having Les and Donna visit. It's been almost a year since they've been together, and everybody is worried about how everybody else is taking Venita's cancer diagnosis. This will give us all a chance to talk/walk/hug through all those feelings.

Ennis Update

It's likely that only those from the feline diabetes community will understand this detailed babbling. For others, the bottom line is that Ennis still has severly diabetic blood glucose levels, but for the most part is acting like he feels OK

Venita's attempt to aggressively slam Ennis's blood glucose (BG) numbers down into a normal range is not working well. She started using Dr. E. Hodgkins' protocol and sliding scale on Sunday, but she is getting mostly high numbers--at midnight Ennis's BG was 372, +6 after a 2U shot. So Venita gave him 4U. Venita is not sure how much she trusts this "shooting into rebound" theory, but she'll try it for a couple of days.

Meanwhile, Tuesday's vet visit for an exam and to draw blood and urine to look for an infection can't come too soon. Venita wants to get Ennis on antibiotics ASAP.

Dr. Chemo Visit and Other News

Not Dr. Chemo actually; another oncologist in the practice. We'll call him Dr. ChemoReplacement (CR).

Venita got the go-ahead for chemo tomorrow (#7 of 8). Blood counts are good. She's going to start methyl B-12 for her chemo induced peripheral neuropathy, if Maxwell will share his pills. Since maybe chemo 3, Venita has had tingling in her fingertips and toes, but now she is starting to get weakness in her knees.

Dr. CR agreed with Venita's concern that her breathing problems might be heart related, and ordered a MUGA scan (see MUGA scan defined here). Venita had one of these scans before the Adriamycin chemo because that drug is contraindicated with a weak heart. Adriamycin also can damage the heart.

Dr. CR explained that the MUGA scan measures the efficiency of the heart at pumping blood out of the left ventricle. "Normal" is around 60%, meaning that each beat/constriction of the heart moves 60% of the volume of blood out of the left ventricle. Venita pre-chemo rate was 72%, which could be indicative of high blood pressure. (Venita was running somewhat high on blood pressure before she got on Paxil for stress.) The follow-up MUGA scan rate will be compared to the pre-chemo MUGA scan rate.

Other recent events:

Venita had a pulmonary function test at Dr. Primary's office last week. No official results yet, but the tech indicated that Venita's breathing is weak. (We guess Venita telling them that wasn't proof enough.) The deep breathing for the test put Venita down for 2 days.

Yesterday was Maxwell's one-year anniversary of his diagnosis of diabetes. As part of the celebration, Venita did blood glucose tests on both Max and his littermate Ennis. Max was fine; Ennis showed diabetic numbers (in the mid 300s). Ennis is back on insulin, but the bottle in the fridge is old and doesn't seem to be doing much.

A friend took Venita for a ride on a Harley motorcycle last week. She hadn't been on a bike since the early 1980s. It was a short safe ride, and Venita really her brief stint as a biker chick.

Dr. Cutter Follow-up

We saw the breast surgeon, Dr. Cutter, yesterday. The purpose of the meeting was a check-up and to plan the left breast (LB) mastectomy. The big news is that the LB mastectomy will likely be the week of September 18.

We asked Dr. Cutter to explain why the LB mastectomy was needed. It hadn’t registered with us that the biopsy sample taken was almost 8x6x3 centimeters—-huge for a biopsy sample. The invasive lobular carcinoma in that sample was only 2 millimeters and excised with clear margins.

However, when the full sample was dissected onto 10 slides, 7 of the slides showed ductal carcinoma in situ nearly all the way up to all of the edges of the sample. There also was lobular carcinoma in situ present. Therefore, the educated guess is that such “peppering” of in situ cancer was throughout the breast, perhaps even past the area that would be excised in a mastectomy. (In situ cancer is basically a precancerous condition; in situ cancer is not know to metasticize.)

Dr. Cutter warned us that the in situ cancer may not show in a pronounced way in the pathology on the mastectomy tissue because Venita has been through chemo, which will have shrunk the cancerous tissue. We are aware of that, and do not plan to play the “we didn’t need a mastectomy” second-guessing game after the pathology is back. Because of the chemo, Dr. Cutter also expects no sentinel node involvement.

We also asked for the staging group on Venita’s right breast cancer. We hadn’t really been prepared for this information before. It is Stage IIIA. According to some statistics, the relative 5-year survival rate for patients diagnosed from 1995 to 1998 with that stage was 67%. That means that that 33% of the women diagnosed with Stage IIIA breast cancer during that 4-year period died from their breast cancer within 5 years of diagnosis. (Yes, this scares us.)

Breast cancer treatment has improved, so Venita’s odds are better than this average. Venita is undergoing aggressive treatment, so her odds are better than this average. Venita has an aggressive form of breast cancer, so her odds are worse than this average. Overall, we think her odds are better than this average, probably around 75%.

Information about staging breast cancer and survival rates are here.

Nearly 75% Down the Chemo Road

Yesterday, Venita had the 6th of her 8 chemo treatments!! Almost at the 75% mark (she doesn't count a cycle done until the beginning of the next cycle).

The Taxel is much easier with side effects than the Adriamyicin/Cytoxin, although the infusion is tougher. Tougher infusion of Taxol because of the pre-chemo infusion of Benadryl, which makes Venita hyper. Also, Venita is running out of veins for the infusion. Yesterday, it took 3 sticks, and she came away with 2 very large bruises. Easier side effects if the last Taxol cycle is any indication; Venita is planning to again have bone pain and abdominal cramping this weekend, but hoping against it.

Venita is starting to get her overall energy back. Today she is multitasking with laundry, some house cleaning, and work-work. It's been maybe 4 months since Venita did any serious housecleaning (she's had someone coming in recently), and although she is not a housecleaning diva, she enjoys a clean house and is enjoying the cleaning of the house today.

Venita's breathing also continues to improve; it's at maybe 75% of normal. Dr. Primary is going to give Venita some sort of breathing capacity test next week.

Dr. Chemo said Venita should not have chemo and radiation therapies at the same time. He said it would result in a bad cosmetic outcome. He did not expound, but Venita plans to ask Dr. Cutter at her followup appointment next week.

Venita is looking forward to, but with anxiety, the mastectomy on the left breast. Looking forward to it to advance this whole unpleasant but necessary process. Anxious because (1) the delay in surgery may have allowed the cancer to spread to the lymph nodes, thereby making radiation on the left breast necessary; (2) the possibility of serious post-surgical complications similar to the ones (hematoma, wound necrosis, and drainage problems) that she had with the right breast; and (3) potential complications that might happen by placing an implant on top of the intercostal (between the ribs) neuritis. But we are trying to be positive and take the attitude that those things won't happen.

Hot Flashes

You may be aware that chemotherapy induces menopause. Before chemo, Venita flirted with menopause; now she's full blown into it.

Biggest problem is hot flashes. It has mostly happened at night when she goes from a sitting to a reclining position--lasts 20 to 30 minutes, feeling hot and sweating. Now it's starting to happen during the day and without a position change.

Any suggestions besides a fan to reduce the hot flashes? No hormonal suggestions please; hormones are contraindicated with breast cancer--fuel to the fire, hormones feed the cancer.

July 8 Update

Nine days past her first Taxol infusion, Venita is doing OK, but disinterested in much besides sitting and resting. She has, however, been able to get some work done this week.

There were side effects from the Taxol. Two days after the infusion, Venita had bone pain in her skull and pelvic bone, and strong cramps throughout her abdomen. She took Dilaudid, and rotated Tylenol and Advil, and went to bed for about 48 hours. She then was constipated (maybe a side effect of the Dilaudid, maybe a side effect of the Taxol), and played the Fibercon/Immodium dance most all week trying to get her GI tract back to a reasonable balance. Venita also has a hardened and tender vein where the Taxol was infused.

Eating is going better. More foods are starting to taste like themselves and not sawdust. Venita had a pizza for lunch yesterday and it was good.

Venita's breathing is also better. Seldom does she need to stop to catch her breath. Head hair also seems to be growing a tad.

Venita doesn't know whether the improvements are a temporary result of having taken a 3 week break from chemo, or instead a permanent result of moving onto recreational chemo. We are so hoping it's the latter.

Venita saw her primary care physician on Thursday. She got the paperwork for a 90-day handicap placard for the car and a scrip for an inhaler that would make breathing a little easier. Dr. Primary didn't want to reduce Venita's Paxil; in fact she wanted to increase it, so it's staying the same. Dr. Primary dealt with Venita's concern about her trouble breathing and possible heart damage by addressing her lungs and prescribing the inhaler.

Next week, Venita sees Dr. Boob for a final fillup of the expander implant and Dr. Chemo for approval for chemo infusion 6 of 8 on Thursday.

We've scheduled out the remaining chemo infusions (if they stay on schedule), and found that the final chemo is on Venita's 54th birthday! August 10 is going to be a major celebration day.

Venita's thinking that if Dr. Boob is now going to wait to change out the implant until after radiation, then maybe Venita can get started on radiation concurrently with chemo. She'll be talking to both Drs. Boob and Chemo about that next week. She'll also likely have to talk with Drs. Cutter and Nuke if she gets OKs from the first 2 doctors.

You all take care.

Venita and Jim!!

First Taxol Infusion

Venita had her first Taxol infusion yesterday. Three "pre-med" IV infusions and then the Taxol. Two of the pre-med infusions--Benedryl and something else for nausea--had an odd cold burning feel going in--like the cold burn of BenGay or IcyHot.

The Benedryl put Venita into hyper-mode. She normally avoids Benedryl because of that reaction. The first hour of the Taxol infusion, all she could do was squirm around in her recliner, wanting to crawl on the ceiling. She was finally able to get to sleep and the final two hours of the Taxol were in slumberland.

Venita has had no Taxol side effects yet and is feeling remarkably well today. She got about an hour's worth of garden weeding done and plans to do a little garage clean-up. Not noticing shortness of breath. No fever; last night experienced hot flashes (which is "normal"). There were thunderstorms last night so Max and Ennis hid downstairs rather than waking Venita up every two hours for food, so she slept fairly well.

Saw Dr. Boob last Thursday and got another 60 ccs infusion in the expander implant. (340ccs so far.) Dr. Boob says one more infusion in 2 weeks. The implant now is just about the size of Venita's real left breast. He also said he's not going to replace the expander implant in the right side with the silicone implant during the left breast mastectomy this fall. He says he will wait and "change out" both the left and right side expander implants at the same time--after radiation. (Keep your fingers crossed that radiation won't been needed on the left side because if it is, it has to be done after the expansion, and that would put the implant change out into the spring instead of the winter.)

Only one doctor's appointment next week--Venita's GP. Venita is looking forward to that. She thinks it is time to cut back on the Paxil because she's been getting really low blood pressure readings.

Venita also wants to find out whether there has been cardiac damage from the chemo and because Dr. Chemo won't order the tests, she's hoping the GP will either talk to Dr. Chemo or order the tests herself. With Venita's pre-chemo EKG, stress test (echocardiogram), and Mugga scan, there should be plenty of baseline to evaluate potential cardiac damage from the chemo.

Back to Chemo

We saw Dr. Chemo this morning and he cleared Venita to start Taxol, the recreational chemo. She starts Thursday, and will get infusions every two weeks. She will have training on Wednesday to find out what drugs she has to take with it and the possible side effects, but so far we've heard it's relatively easy and only causes muscle aches.

Venita's temp has only broken 100 degrees four times in the past week. She still has serious shortness of breath, but it is getting slightly better. And it seems her taste buds might be coming back some; she ate soup the last couple of days, a big step up from juice and jello. When asked, Dr. Chemo suggested Venita smoke marijuana. Although medical marijuana is not legal in Delaware, he said that "people manage" to get hold of it.

P.T. Cruiser called today to get details on Venita's failure to show up for therapy. (PT's been on a 2-week vacation and Venita thought moving from the chair to the bed was therapy.) PT released Venita from therapy and told her to show up with a new scrip once she started feeling up to it.

Dr. Boob put more saline in the expander implant last week. It's now up to 280 ccs (capacity is 450). So the end is drawing near on that process.

Thanks to all who have offered words and thoughts of encouragement during what has been a very difficult time.

BTW, Bailey's cremains came home last Thursday.

"A Touch of Pneumonia"

...According to Monday's chest X-ray, says Dr. Chemo's office. That might explain the fever and shortness of breath. Venita is now back on oral antibiotics.

Home from the Hospital

This week, Venita spent from Monday night until Thursday noon in the hospital on IV antibiotics. Dr. Chemo and a doctor who is an infectious disease specialist kept trying to figure out what is causing the fever.

Venita had blood, urine, and stool cultures, chest X-Ray, CAT scan of the chest, abdomen, and pelvis. Nothing that would be a possible cause showed up. On Thursday morning, Venita asked to come home because there was nothing happening at the hospital that was improving the situation. Dr. Chemo seemed somewhat pissed, but OK'd the release.

This was Venita's first ever hospital admittance. She was in the oncology ward. Food was so bad she asked food services to stop bringing her a tray. Her roommate got a DX of lung cancer the morning Venita was leaving. Why couldn't they have done that somewhere private?

So the fever continues, but it is not peaking as high as it was. Now it is only peaking in the 102 degree range. and it is taking longer to peak; sometimes 6-8 hours instead of the previous 3-4 hours. Last night, for a brief period, Venita felt like the fever had broken. She could think clearly, and move without pain and fatigue.

Venita is on Tylenol therapy, but no oral antibiotics.

Venita sees Dr. Chemo on Monday morning. Chemo is on temporary hold for now.

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Goodbye Sweet Bailey

Adopted on Venita’s 42nd birthday, August 10, 1994.

Euthanized June 9, 2006.

Bailey came to us as Brad. He was a perfect Tuxedo; beautiful. He had been “in custody” at a no-kill shelter since May 29, 1992. When he was trapped at a truck stop in Danbury, CT, he was believed to be about one year old. He was at least 15 years old when he was put down; we think he was older, maybe 18.

Brad resided in the “shy guy” room in the shelter and not handled or socialized to people. His first adoption a month earlier failed.

Brad was feral. He was terrified of people. Often, Venita wondered whether he was autistic.

Venita didn’t like the name Brad. She wanted to name him Crocker or Crosby. But he wouldn’t respond to a name unless it started with B. So Bailey he became. Jim nicknamed him Buddy. Venita nicknamed him Bail and BailButt.

It probably took about two years before we could even look at Bailey without terrorizing him. He would camp himself under the kitchen table and watch us. If he ever saw us looking at him, he would take off for another location. Should he have ever gotten out of the house, he would have been irretrievable.

Although declawed in the front, Bailey was a holy terror to corral for the annual vet visit. Once, as Venita was going up the stairs to corner him in an upstairs hallway, he jumped onto her back and pushed off with his back claws. He was strong! The only way to get Bailey in the carrier in the early days was to outlast him during the chase around the house.

As Bailey got older, and arthritic, we were able to approach him more easily, but he still let us know when we were not welcome by growl, or full-mouthed hiss, or getting up and leaving. Where Venita now lives, Bailey had 2 ½ rooms. For the winter, he had beds next to the furnace registers in the dining and living rooms. For the summer, he had the Florida room, where he could lay in sunbeams and next to the screen door for most of the day. His dining room bed was his “safe place;” and it was often there that Venita could approach him for petting, headbumping, and brushing. Looking back, Venita did not approach him nearly often enough. Out of the way like that, he was easy to forget. Sometimes, a couple days would go by without Venita seeing Bailey. He would sneak into the kitchen for food when Venita was on another floor of the house or sleeping.

There were times over the years that Bailey would join Venita in bed, but only after she had laid down and usually only while the light was still on. He was ever vigilant against the terror of people, even though he desperately wanted to love and be loved.

If Bailey hadn’t gotten along with the three other cats (Maxwell, Ennis, and Lily), he would have been returned to the shelter. But Bailey loved our cats. Small problem was that he wasn’t socialized to cats either. He would walk straight up to Max and Ennis and give them a full frontal headbump at anytime, even when they were eating. This lack of feline socialization persisted to the end. Bailey also didn’t realize that at 15 pounds, he didn’t have to be subservient to the bitchy little 9 pound Lily. She would haul his ass around the house, showing him that she was not the lowest kitty on the pole. But that was Bailey; a most gentle soul.

We got Bailey so that we would have an even number of cats. Venita thought that with four cats, everyone would have the chance for a friend. It didn’t work out that way, but the dynamics of four was very different from the dynamics of three, and we would not have missed a day with Bailey.

Bailey always had been overweight, but he got grossly obese the last couple years. The swinging cow belly look. With his weight, coupled with his arthritis, it was painful for him to get around. But Bailey NEVER failed to make it to the litter box, even though it meant having to painfully negotiate steps and sometimes brave a gauntlet of Jim and Venita watching TV in the family room. Starting in November 2005, Venita withdrew Bailey’s dry food and he slowly lost weight and became much more active again. He started jumping into the bedroom window about 2 months ago, an activity he enjoyed but had given up some time back.

Bailey’s desired weight loss continued past ideal and he started to look boney. About a month ago, Venita noticed a housewide bout of black-green diarrhea and mouth foaming, but she was on her way out the door to therapy. When she returned, she found Bailey on the chair in her room foaming at the mouth and oozing diarrhea. Directly to the vet that day and the next, but nothing but “no result tests” and shoulder shrugs. In the course of 6 months, Bailey had lost about a third of his body weight.

The day of the diarrhea/mouth foaming, Bailey stopped eating and didn’t eat again. Never pooped again either. Despite Venita’s best efforts at things like trying another vet and getting probiotics, appetite stimulants, SubQ fluids, and food soup into him, she was completely unsuccessful at turning his condition around. Yesterday, he “slid” down the stairs to the litter boxes, because he could command his back legs no longer. He was skin and bones. Venita scooped him up, put him in the “sick room,” and called the vet for an appointment today to put him down.

This morning Venita put Max into the sick room with Bailey. Bailey loved Max the most, because Max came to put up with the headbumps and would let Bailey eat and drink from a plate/bowl with him. Max didn’t want to go near Bailey (we suspect Max could “smell” the nearing death), but Bailey loved just having Max in the room. He started purring.

At the vet’s office, Bailey pulled himself around the room exploring and trying to give us his loud angry meow, which he could not manage except as a nearly noiseless chirp. The alternative vet and the vet tech were very kind with the procedure. Venita stayed in the room watching and crying; Jim couldn’t stay.

The vet sat with Bailey on the floor and gave him a rubdown to the sound of new wave music. He loved that vet and her touch. She gave him the first shot to put him into a “coma.” He really fought the effect, but finally rolled over onto his right side. She rubbed him more, and then inserted the IV line into his rear leg. As she started to inject the barbiturate, he took a final deep breath. The vet checked for a heartbeat, pronounced him gone, and invited Venita to stay as long as she wished. Venita stayed, petting Bailey’s silky black fur, feeling how pliable his body now was, headbumping him, until his foot pads started getting cold. She did not give him a belly kiss. Bailey had never allowed that in life, and Venita had promised him long ago she wouldn’t violate his dignity when he died.

Even though Venita would like to know what took Bailey, she is not having the vet open him up. The vet suspects diffuse cancer.

Venita will pick up Bailey’s cremains a week from Tuesday.



Saturday update: Overnight Venita had shaking chills and a temp of 103.6. She’s under orders to call the oncologist with that type of condition. She may just end up in the hospital this weekend.

Into the Fire

And we thought the frying pan was bad. Venita white blood cell (WBC) count on Tuesday morning was 300 (normal is 3800 to 10,800). Dr. Chemo called her in on Wednesday, and she showed up in 3 layers of clothes plus jacket, ski cap, neck scarf, and shivering like a naked polar bear. Temp was only 102. Dr. wanted to put her in the hospital for two days for IV antibiotic. Venita declined; the cat Bailey is on ABs and fluids and may need to be put down when he returns to the vet on Friday.

So Dr. Chemo sent Venita to an outpatient procedure unit for the IV ABs. At release, her temp was 104. She continues in bed and on Tylenol. This morning's temp was close to 99 and the bed sheets weren't soaked. Maybe there is an end to this tunnel.

We'll call Dr. Chemo this morning for followup. Good chance he'll want a stat CBC to assess whether more IV ABs are needed.

Been AWOL

Where have they been? Where are the updates?

First of all, we want to recognize Robin’s distress and her post on the FDMB asking for prayers for herself. Called back on her mammo, Robin has an area in her right breast for which she will receive a sterotactic needle biopsy on June 21. Robin you know that you are totally in our thoughts and that we will be walking with you every step of the way through your challenge.

The week of May 22, being the second week of Venita’s 3rd chemo cycle, usually would have been her good week as side effects diminished and she regained her appetite. She had looked forward to a Memorial Day picnic where she could enjoy eating a grilled cheeseburger and corn on the cob.

But certain side effects became worse, in particular major fatigue, alternating chills and sweats, an incidence of vomiting (no associated nausea), and hardly any food that didn’t smell like cat food or taste like sawdust. All in all, it was nearly impossible for Venita to function. She cancelled two of her 3 physical therapy appointments, and PT Brusier sent Venita home from the one she was able to drag her butt to.

Friday, Venita saw Dr. Chemo, and the reasons for many of these problems became clear. Near the end of the appointment, Venita asked what the white blood cell (WBC) count from her Tuesday blood draw had been, and it was only 1200. (Normal range is 3800–10,800 and the previous Tuesday, her count had been 4800.) Dr. Chemo surmised the fatigue and chills/sweats are the result of an infection and put Venita on antibiotics. She also spent several full days in bed. Bought a digital thermometer and found her temp was fluctuating between 96 and 105 degrees.

Dr. Chemo surmised the vomiting without nausea so late in the cycle was not chemo-related, but rather reflux. His office had advised Venita to take a particular over-the-counter product for this two-weeks before, but once Venita learned the cost, she had called back in for something prescription, but that had fallen through the cracks. Dr. Chemo wrote and Venita filled a scrip for Prevacid. No more vomiting since.

Through the Memorial Day weekend, Venita remained pretty low key. She was able, thankfully, to have her 4th chemo session on Tuesday, May 30. Getting the infusion was touch and go for a bit because Venita’s fever had been up to 102 degrees the previous day, but a WBC count of 12,000 saved the day.

That is the last of the brutal Adriamyacin/Cytoxin chemo, and Venita now moves on to the recreational chemo—Taxol. Everyone promises fewer side effects—likely achiness only. Four session; one every two weeks. Last chemo should be on July 25. Seems only a short 8 weeks away!!

Venita also is taking a break from physical therapy until after brutal chemo is completely out of her system.

Bailey the sick feral cat is not doing well and also needs your thoughts. He is starting his 3rd week of not eating. His blood tests are now showing distress/disease in his liver. He is getting (yesterday and today) IV fluids and antibiotics at the alternative/conventional vet. Hopefully, he will be able to undergo a dental procedure this afternoon; the guess is that an inability to chew set him on this failing course. He is either going to rally here soon, or we will lose him. If the latter happens, we will be very hurt, but he will have had a great run!!