Dec 29: It happened Dec 27th

There are many of you following (although no one but Deneen leaving a comment!), which I know about when I run into people. There are at least a couple dozen people who are checking fairly regularly that I'm aware of. So please accept my apologies for keeping you waiting.

Martha passed away on Sunday night. John was there, as was his sister Jane and his brother Billy. John said the end was 'beautiful', she started taking shallow breaths about 30 seconds apart, and then, suddenly, for the first time in days, opened her eyes and looked at him.  Then she closed her eyes and just stopped breathing, he said she looked very peaceful. As predicted, he did cry at the finality, which is why you need loved ones around you. No one should die alone, but that person also needs someone with them, so this was best case scenario.

Of course I'm upset that I wasn't there. Clearly she was in her body until the end. Her temperature had climbed to 105 in the last 12 hours, unbelievable that a body could last that long being that hot.

My exhaustion didn't hit until Sunday morning, and I've been just wasted. That's my excuse for not posting then. And, of course, there have been phone calls to various people.

Thanks to all those who have sent me loving texts and the personal hugs from others.
I'll catch up on other things this weekend, in-between sleeping and mental recuperation.

Thanks for checking, Laurie

Dec 26: Martha update

Martha was barely conscious throughout Christmas, some change in expressions when we would talk to her, mostly unresponsive. The nurses come in every 2-3 hours to change her. I feel so humiliated for her, having to have such basic things done. They pull off the sheets, remove her diaper (an inelegant chux with tape), expose her privates, clean her, put on another diaper, put the pillows under her to prevent bed sores then cover her up again. They are wonderful nurses: caring, always talking to her, concerned for her comfort. A woman with a master's degrees, held public office and was supervisor of her township, energetic, willful, organized to the nth degree, and none of those things change the indignity of the situation.

John had decided to spend Christmas overnight with her; Fernando, Lyle, Emma and I were going back to the house. But just as we were ready to leave her temperature spiked to 104. This is one of the signs that the body is shutting down, not an infection, but the body's cells just going haywire. That in combination with 12/25 almost being over gave a clear indication that she might be ready to let go--she had met yet another goal of living through Christmas.

John asked me to talk with both the kids, tell them the above, give them both the option of staying. But then I added that, quite frankly, my opinion was they had seen enough already. They came to their conclusions separately, and left with Fernando. There was no way I was leaving John alone, so I stayed with him. He is prepared, he is hoping for her to be released from her pain and suffering, but he doesn't realize that the time of death is still going to be terrifically emotional, because of the finality.

On December 26th at 12:01 am I went to Martha's bedside and told her that it wasn't Christmas any longer. John shot me a look, and I knew what he wanted me to do. We have discussed this before, and he wants her to know that it's OK for her to let go, OK for her to die and be released. And yet he can't do it himself, he can't tell his wife to die. Who can blame him? The tenderness he displays with her, constantly, is just wrenching to watch. The way he caresses her face, wipes it with a cool cloth, holds her hand, dips a moist sponge and wets her lips. It makes me cry to watch him. So few of us have ever experienced a love that deep. Why does one of the few truly loving marriages have to end like this? Why does he have to watch the love of his life suffer, whither away, groan in pain when moved, lie there with her face slack and her mouth hanging open?

John left the room, I sat next to Martha and stroked her burning face. I told her how much John loved her, what great children she had raised, how much she had helped her brothers, how she had taken care of one of her nephews when her brother got into a bad spot, which allowed him to pull himself together and become a great Dad. I told her what an incredible legacy she was leaving, how many people she had affected, how the world was better for her having been here. A single tear ran down her left cheek, confirming that she heard and understood me, but making it very difficult to not start crying. I told her that we loved her, but knew she was suffering. And that it was OK to let go, it was OK to leave us. John returned to the room while I left, breaking down in the hallway at the unfairness of it all.

She hasn't let go, however. I don't know why. How can anyone know what is inside her right now? As John said, she's always done things her own way in her own time, and her dying will be on her timetable as well.

So I'm back home. I wanted to stay, wanted to be there for John and the kids at the end, wanted to see it through. But life goes on, I have commitments tomorrow and have to work all four days next week because of other's vacation schedules. Fernando is still there, John's sister arrived from New Zealand (where she's lived for 20 years) a few hours after I left, and I'm only a phone call away for suggestions or support. But it's not the same as being there.

Right now I desperately need a full night's sleep, since last night at the hospital was less than restful. I also very much want to go to Fellowship tomorrow, to be renewed and surrounded by the love and support of people I care about. That, to me, is spiritual.

More later, thanks for checking, Laurie

Dec 25: 12:15 pm, yesterday's difficulties

I'm typing this at the house in Ossining, having some quiet time before joining the rest of the family at the hospital.

Yesterday was rough. John left the house just after 6 am to do some shopping, he beat me to the hospital by about 10-15 mins, texted me and said "M doesn't look good...." The breaths were about 3-4 a minute, although she had recognized John and then me, so she was arousable. But over the next hour and a half she stopped responding to our voices. I called Fernando at the house and told him to come over with the kids sooner rather than later.

The silver lining here is that after all the energy expended on Tuesday everyone was much more matter-of-fact. There was no crying, no sobbing, just quiet sorrow. It was, again, torture watching her; the breaths slow and ragged, long pauses that made you think it was the last one and then another breath.

Family started arriving. She had stopped responding to anything other than deep pain stimulus, which the nurse would clear the room for, except for John and me. But then her father arrived, and she responded to him. He sat by her, holding her hand, talking to her. She didn't react to John or the kids at that point. But he's her Daddy, and he pre-dates everyone else in her life. Before the kids, or John, or even her brothers, there was her Daddy.

The day dragged on like this, they told us that death would still be hours or days away as long as she could be stimulated. Martha's brother always has a big Christmas Eve party, so everyone started leaving for that. John and the kids went, a much needed break and chance to interact with other concerned people. I had already said I'd stay--large crowds of people I don't know isn't my favorite thing, so a good excuse. Fernando stayed for a while, and we noticed that her facial expressions and grunts were in response to us talking. So we started to direct more comments to her, and it continued. She was clearly hearing, understanding and expressing herself to the best of her ability.

The nurses offered us one of the hospice suites, which was gratefully accepted, even though she isn't technically hospice. It's a double room, so her room and then what can be used as a lounge with a full-sized pull-out bed and the use of that room's shower. We had stockings, and a little tree (both provided by a close friend, Beth P, who I've become convinced can accomplish ANYTHING--the woman is a wonder!). So I stayed and did a running monologue for hours, and again she would respond to what I was saying. Fernando came to relieve me about 11 pm, and I told her it was almost Christmas. Her eyebrows shot up in surprise and apparent pleasure.

F called this morning, she's sitting up and drank half a glass of water. Unbelievable. John is calling her the energizer bunny, because she keeps going and going and going.....

Is it the new chemo? All the prayers? Christmas miracle? Martha's dogged determination and refusal to quit? Probably a combination, but we'll never know.

So Happy Holidays, Merry Christmas, Happy Solstice, Happy Kwanzaa.
And Peace on Earth.

Thanks for checking, Laurie

Dec 23: Martha

So much has happened in the last few days that it's hard to know where to start. You'll soon understand why there hasn't been time to post. So I'll try to hit the high/low points. I've been asking everyone to check in here rather than answering individually, but that only makes sense if there are actually updates!

Friday, Dec 18, the oncologist told John he thought Martha should be in short-term hospitce. How short-term, you ask? Two weeks.

On Saturday she had another CT of her torso, not the brain, which requires an MRI. All the areas where there was cancer have advanced more. Every area is worse, except the liver, which is the same. But all the bony areas, the pancreas, adrenal, lung and lymph nodes: all worse. This despite the Taxotere chemo.

I arrived on Sunday, Dec 20, too late to get to Emma's ballet. I was just so backed up from being here before, and too much to do, even with Friday and Saturday being days off. The blizzard was good in some ways because it meant not leaving the house, but there was still more than could be done in one day. Additionally, my boss had wanted me to do on call Sunday night and I asked to do Saturday night instead. So more tired, not as efficient, just couldn't get going in time.

Martha was technically discharged from the hospital Sunday, taken by ambulance to the performance, then brought back to be technically re-admitted. By all accounts it was a wonderful and moving experience for all. The performance was great, Emma was terrific, and lots of people were able to give their love and support to Martha in person. There was a lot of emotion, however, as people realized how much worse she was and that the end is near. But the flush of excitement and happiness was still glowing on her face as they wheeled her into the hospital room where I was waiting for them all.

Monday she was tired, but stable. I got there first, alone. She looked at me and asked how John and the kids were holding up, which she hasn't said before to anyone. Then she looked at me and said "I'm starting to feel like I might not get better." I said "No, you might not." Of importance here is the use of the word 'feel' instead of think. You can logically think you might die, but when you feel it then it's different--it's from your core. The many times around my illness that I felt I was dying were very distinct, especially with so many doctors telling me (wrongly) that I wasn't dying. But I knew, you just know, you feel it. Trying to expand the thought process, I reminded her of my OCD tendency to want every possible outcome covered, asked if she wanted to dictate letters to John and the kids. She looked away and said "I know I should...." looked at me and said "I'm not ready yet." "That's OK," I replied, "I just wanted it out there for you to think about." It's the only time she's ever expressed the possibility that she isn't going to get better. But nothing further was said, because a nurse came in for routine vitals and the moment was lost.

Later that day John and I talked to the oncologist at length about more chemo. Did the Taxotere help? Who knows? Maybe it slowed things down, maybe not. So the oncologist said that it didn't make any sense to give another round, because it wasn't even keeping it in check. So he discussed another drug, Navelbine, that might help, but expressed serious concerns that her reaction would be bad in her weakened condition. After many questions, John and I presented it to Martha, emphasizing the pros and cons. Adding to the pressure was the doctor's opinion that by next week she would be too weak to even consider it, so it was really only now that it was even an option. John had bad feelings about the side effects, my feeling was that since it was now or never, that if she died before the two weeks he would always wonder if it would have helped. But the decision was Martha's. And she wanted the chemo. It was given late Monday afternoon.

Tuesday, yesterday, John and Fernando (John's step brother) got to the hospital around 10 am, I arrived at 11, by which time Fernando had decided to take the day off and have lunch with friends in NYC. (We're so close it's less than an hour to Grand Central Station.) The labs from the morning were truly horrible--the white count was 67,000 (normal is up to 10,000) John told me her breathing seemed labored and she seemed really out of it, then stepped into the hallway to make some phone calls. It took only a minute to determine that she was exhibiting Cheyne-Stokes breathing, a pattern where they breath but then have long pauses, then fast breathing to slower breathing to long pauses. It's how you breath in the hours before dying. In the next hour and a half the pauses got longer and longer, she was only breathing 5-6 times a minute and was less and less arousable. I looked at John and said "I think it's time to call the kids." He stayed with Martha while I made the called Lyle. God, that was hard.

After I was back in the room and Lyle and Emma were on their way, John stepped out to call her father and brothers. She had a moment of lucidity and I said "Martha, you need to stay with me. You need to stay here with me until the kids get here. Just stay with me a little longer." She focused on me and asked "Hang on?" "Yes", I said, "just a little while longer, until the kids get here." She nodded.

There are not enough adjectives to describe how truly terrible it was to watch the kids see their mother, experience her lack of responsiveness, hear her labored breathing. She had a few moments of recognition with both of them, but then became less and less conscious. She would open her eyes, stare at Emma lying next to her, holding her hand, but there was no expression, no connection in her gaze. It was totally detached. Lyle was on her bad side, the right side with the arm swollen like a balloon and so painful, his grief more contained. Emma kept telling her she loved her, kept touching her face.

For the next couple of hours it was just the four of us with Martha, listening, watching. There would be 12-15 second pauses and we would all sit forward, hold our breaths. Then she would gasp again and start breathing. The three of them kept looking to me, asking how much longer. I said 6-8-10 hours, maybe? There was an issue with paperwork, she needed to be a DNR before the morphine drip could be started. Her brow would wrinkle, she would rub her face, which John had noticed before meant she was troubled and in pain. Her temperature was almost 104. It was torture, watching her, seeing John and the kids suffer with her.

Other family started arriving. Her brothers, her father, her half-sister, a friend, nephews. All touching her, telling her how much they loved her. And something incredible happened over the next several hours. It seemed like the more people that came in and out, the better Martha's breathing would get. And then she started having more moments of lucidity. She could answer a simple question, but just one. At one point she looked up at me as I was wiping her face with a cool cloth and said very clearly "The music is so pretty! It's such pretty music!" There wasn't any music the rest of us could hear, but this is a well-documented phenomenon, called 'Celestial Music', heard by the dying. "What are they playing?" I asked. She didn't answer, but had a pleasant dreamy look on her face. "It's just pretty, huh?" I said, she nodded yes and then stopped responding for a while.

But then again she just got better and better. By 9 pm she was sipping soup, talking a little more. After over 10 hours of almost dying, she started perking up. Fernando, bless him, came back to the hospital and stayed with her, awake, all night. He told us this evening that he offered to hold her hand, which she usually doesn't like. But she did, and he said all her tremors stopped. If he let go her hand, she would get restless, start flailing around, but quiet again when he would pick her hand up. He stayed with her like that, for 5 hours, through the early morning hours when many people die, just holding her hand while she slept. There is no doubt in my mind that the human contact anchored her in this world. I think it saved her life, at least for another little while.

This morning she was sitting up, pretty bright eyed, responding and interacting with us. Her white count dropped by 30,000, other numbers improved as well. Is there an explanation? I'm not sure. But she's much better today, although some nausea and vomiting started later this evening. The oncologist thinks it's from the morphine drip, is now giving her regular medicine to help.

John, Fernando and I are all exhausted. The strain is evident, yesterday was truly horrible. The emotional roller coaster, trying to support each other and the kids has taken a toll. Fernando has gotten only a few hours nap, John got about 6.5 hours last night, I was forced by my body to get a full 8 hrs. Other family members stepped in tonight and we stayed at the house from late afternoon on. As soon as this is finished, even though not polished, I'm going to bed. Fernando already went to his space in the basement, John is resting upstairs. Emma went with one of her uncles to the hospital and Lyle is hiding his pain with a poker game at a friend's. I'm going to take a quick shower and crash on my aerobed in the living room with ear plugs in.

Tomorrow the full effects of the newest chemo will hit, seem to have already started. And it will be Christmas Eve. We're already planning total coverage, not leaving her alone, moving the holiday into the hospital room. There is no doubt in any of our minds that through sheer force of will Martha will make it through the next few days. And then it will be a matter of seeing her response to the new chemo, hoping it will buy a few more days or weeks with more good moments.

Prayers and healing vibes for all of us are gratefully accepted.

Thanks for checking in, Laurie

Dec 23: Zerla

The left leg is doing great. The right leg isn't doing as well. They have brought up the Cushing's Syndrome issue again. Just not able to deal with it now. It's a dismal prognosis if that is the problem with her soft tissue.



Even if she can't get around quite as well my hope would be to bring her home and have as much quality time as possible.



On the bright side, she is still the darling of the vet hospital and getting lots of love and attention!



Laurie

Dec 18: 9:00 pm: updates on both patients

Zerla is doing much better! The post last night was when I didn't think she was going to be alive this morning. But she was looking bright-eyed when I finally got up at 9:30, still moving with a lot of pain. I gave her some of the pain medicine, which is animal ibuprofen, but not approved for usage in cats for any more than a couple days. She hasn't had any for at least five days now, and was clearly having difficulty. My other big concern was that in 72 hours at home she had only peed once and no poo. The only thing that could be done was to try another litter box--she has her choice of two, but one of them seems a little too high and the other one that is lower is pretty small. So late this afternoon I went to K-Mart and found a perfect one. Came in her room, poured the litter into it, left the room for about 10-15 mins and very large deposits of both things were already in the new box! I've just spent about 2 hours with her on the floor, a little computer stuff and a lot of phone stuff, while she groomed with the collar off. But I'm awfully sore now, so collar is back on while I sit at the desk and type, she's lying very near me. Can't do it this way with the collar off, because she is just too fast getting back to those stitches.

That's the good news.

Martha is really going downhill fast. They didn't give her more chemo because of her blood work getting worse and worse, her hemoglobin is down a full gram in two days, the white count continues to climb. She's also in a great deal of pain and taking more and more of the narcotics, something she resisted in the past. John isn't sure how much she understands, although the conversations with the oncologist are held in front of her. With seeing her in so much pain, however, it is allowing John to recognize that things are moving from palliative to comfort measures.

John has efficiently arranged for the local volunteer ambulance service to take her to Emma's Sunday performance, but it's not sounding like that will be physically possible. My plan was to go up tomorrow, Saturday, then be able to contribute and help for all Sunday, coming back Sunday night. But under the circumstances that seems like too little. And now there's this blizzard coming in, which, by the way, is entirely due to the fact that the ballet was moved to this weekend, because there had been snow storms the last several years on earlier weekends the ballet was scheduled for.

Fortunately, there is more than enough coverage at work for both Monday and Tuesday, especially with fewer and fewer in patients in the hospital. So the current thought is to leave early Sunday morning, swinging by to drop Zerla off for medical boarding, then head to NY, barely getting there in time for the ballet. Then stay until Tuesday night. I'm supposed to take my Mom down to Beth & George's in Virginia for Christmas Eve through Saturday. Next week at work two of the full time PAs are off, so that wouldn't work to take off.

No matter what happens this is not going to be a happy holiday.

Thanks for checking in on the sagas, Laurie

Dec 18: 1:15 -2:00 am Concern for Zerla

Spent several hours on the phone, on call, had to get out the fax machine from the closet, unfortunately that involved disturbing Zerla. Her favorite place out of the three set up for her in the study is in the closet on a pillow. I was able to move her out on the pillow, and she watched the rest of the back and forth with the fax machine with interest. By 10 pm everything was done, I carried her out on the couch and put her next to me. Her collar was off, she could groom with me next to her making sure she didn't pull at the sutures and I could watch TV while Tabitha happily settled on my lap.

About 30 mins later Zerla had a seizure. It lasted about 1 1/2 to 2 minutes. Her eyes rolled back, she twitched all over, wasn't breathing, didn't respond to me. But she came out of it and a minute later started cleaning herself. She moved over to be alongside of me, her favorite position, I stayed watching TV much later than normal to have the quality time with her, stroking her.

The vet told me when I picked her up that he's suspicious that she has Cushing's Syndrome, which is when too much cortisol (steroid) is secreted. This would explain the difficulty with her soft tissues in the knees. It could be coming from her kidneys or pituitary, he said to wait a couple months and then we'd test her. He seemed to indicate that medication would help, but my research on line indicates that surgery is better for cats but it has a high mortality rate. I don't think either one of us could go through that.

Getting her settled tonight she is clearly in pain. It's been three weeks since the first knee surgery, but her last procedure on both sides was just 10 days ago. She's had her knees operated on five times total during four surgeries. After eating and drinking a little she walked, with great difficulty, across the room and settled herself in the back of the closet where the fax machine had been. Her breathing seemed labored, she was crying when she moved about.

Checking in several times over the last hour she's more comfortable, gave me her usual purring as soon as I started petting her. I'm putting this down to pain, with the decision to not race off to the vet (an hour away but open 24 hours) because if something more is wrong then enough is enough. She's been through so much and has many more weeks of recovery. I don't regret any of the surgeries, when I took her in for the first one it was clear she couldn't live with the kneecap popping out every few steps and everything else has just snowballed from there. The concerning thing is that the morning I took her for the first surgery what went through my mind was "Whatever happens, I know there was no choice but to get this done". It was a foreboding sense that things were not going to go well.

She's such a loving, sweet cat. A little shy, hides from people, but when she is found and fussed over she just purrs and purrs. She's the only one who comes to comfort me if I cry, lying alongside me on the couch or getting on the chair next to me and reaching out to put her paw gently on my leg. She's done that dozens of times in the last six years, it's very deliberate. She loves to be fed, quietly waiting by her bowl as KC loudly meows and paces back and forth. She poises herself like a fuzzy gargoyle over Tabitha, hoping to sneak some bites after she's done eating and before I take away the bowl. She never demands attention, like Chester and Tabitha do, just waits patiently to be recognized. I'm not ready to lose her.

Just needed to update, because it's certainly too late to call anyone. Laurie

Dec 17: Zerla Out, Martha In

Zerla came home on Tues, 12/15. It's a mixed blessing. I love having my fuzzy sweet girl home, but she requires a lot of care. She still has an impressive number of sutures in on both rear legs; making her look even more pathetic is the mohawk stripe of fur down her back to her tail, then the shaved haunches with the stitches on either side. Plus the plastic collar that keeps her from getting to the stitches--a cone that fits over her head and is secured with a bright red collar, in an attempt to spruce her up a little. That has to come off for her to eat or drink, and she must be watched carefully while she grooms as she wants to lick at the sutures and tries to sneak down to them frequently. Her walking is painful to watch, on her toes and limping with both legs. The vet is pleased at how she is walking at this point, considering four surgeries. But the sutures have to stay in for at least another week, and it will take about four weeks after that for her to heal enough to be out with the other kitties. I'm trying to sit with her as much as possible, she makes it much easier by purring up at me with only a little bit of ear scratching.

The bill for her care is now up to $6,500. It just kept going up and up from the initial estimate. And an unrecognized therapy is a cat purring while being petted--it really is soothing. It's a huge amount of money, and means no new windows, but it is what it is.

Unfortunately, Martha went back into the hospital on Monday. Her white count is going up and up, which we hoped was from a sinus infection (treatable), but the oncologist told John today that it's the cancer growing so rapidly. Yesterday she was really bad, couldn't even speak a couple words together. Yet today she was out of bed and walking a little. It will be decided tomorrow if she is strong enough to get another chemo treatment. John understands that chemo is just palliative at this point, and she seems to get worse on the 'rest' week when it isn't given. The next goal is Emma's performance in 'Nutcracker' this weekend; she has the largest part she's ever had, dancing solos even. Martha desperately wants to be there, at least as much as Emma wants her there. John has promised Emma that they will do everything possible, but was wise enough to leave it at that.

My terror is that she will die in the days before or on Christmas. People who lost loved ones during the holidays are still traumatized 20, 30 years after. It will be so devastating to the kids as well as John to lose her at that time, on top of the obvious loss of a mother and wife. That's the time for ventilator, dialysis, etc. Honestly, if her heart stopped at 11:00 pm on Dec 25 Id want CPR done for 61 minutes just to delay date of death. But right now all we can do is take it day by day.

Fortunately, John's step-brother Fernando has come to help. He's currently unemployed, which has been a wonderful circumstance in timing from John's standpoint. Fernando is a very calm, even tempered chap who has been pitching in with cleaning, cooking, getting the kids off to school as well as helping with Martha. There's been a distinct relief in John's voice since he came last weekend. It allows him a little relief and down time, although he's stretched to the limit.

But it doesn't change the fact that the whole thing just plain sucks.

I'll write a seperate post on my current health, etc. Thanks for checking, Laurie

Dec 9: Zerla & Martha updates

Zerla's saga continues: she has now had a total of 4 surgeries on her knees. The latest was just today, apparently she doesn't have enough soft tissues and fascia to take over while the bones heal, so she needed a 'minor' procedure today on both knees where the surgeon put in bands to hold the kneecaps in place. He says there should be dramatic improvement within 48 hours, but he's being very reserved about the timeframe. In 20 years of vet surgery he says he has never seen this in a cat before, although in some dogs. So Zerla has something very unusual that is taking four surgeries to correct. Could she BE more my cat?!

Martha came home from the hospital on Friday, after her third chemo of the Taxotere. Coming home was much more tiring than she had thought it would be. Having to physically cope with more space was tough; stairs and longer distances to get to everything seem easier in the mind than the body. John made a stellar decision to hire an agency to provide help for overnight help, Martha gets up at least twice a night with soaking sweats requiring changing of nightgowns, pillow cases and towels covering the bed. This means he has a solid 8 hours to sleep, which he sorely needs.

Saturday was a total reality check for John, Martha, Lyle and Emma. Everyone was insistent that they wanted Mom home, but Martha is much weaker than she was before the hospitalization, needing help with even minor things such as getting up and down from chairs/sofa/toilet, walking and the stairs. They were all shocked by the information that it takes about a week to recover from each day in the hospital--a nasty statistic I picked up somewhere. After visitors in the morning she was totally wiped, spending the rest of the day napping. Emma pitched in to help with her very needed shower, at which point Martha understood why a shower chair had been recommended. We used the commode instead, which we had brought home despite her objections. The commode was then relegated to being put over/around the toilet for help in her getting off/on the seat. This involved removal of the toilet seat, my expertise impressed Emma; she was then regaled with many stories of interesting rescues. The toilet seat had been on for at least 15 years and had a bugger of a screw/nut combo which took an hour to remove. My chest was screaming in pain after, but it was a great feeling to accomplish something; Darvocet and 10 hours of sleep gave me resolution.

Sunday was similar, it's an adjustment for all as they have never had any experience with severe illness before. While Martha came to Brigham for my thoracotomy, she didn't see me intubated and left after a few days. With the kids younger when I was sick, as well as being over three hours away, they didn't see me struggling with recovery. For those of us who are in health care or have been around sick people, these difficulties are known, but it is all new to the four of them as well as their families. As painful as it will be it is something that they all have to go through, to experience, in order to accept what will come over the next couple/few/several months.

Martha was very upset on finding out that when she was the most critical John had followed the doctor's advice and made her DNR. She has told us that she wants to be shocked, put on a ventilator and get dialysis if necessary. The heart-wrenching phrase which followed all of this was "I'm not ready to leave my kids." Is any mother, at any time, ready to desert her children?

In researching on-line it seems that Taxotere as a second-line treatment for metastatic non-small cell squamous lung cancer almost doubles survival rates. That being said, those numbers boil down to 4.6 months increasing to 7.5 months.

It's going to be a rough time for everyone.

Thanks to the many people who have expressed concern and are sending thoughts and prayers, Laurie

Dec 7: The unexpected left jab....

Need to get to bed, so will post the Martha/Zerla update later this week--promise.

Week before last there was an envelope from Brigham Hospital. As I put it aside to deal with later it crossed my mind that sooner or later the news would be that one of my two doctors there would be retiring and my care being turned over to someone else. Dr. Cohn, my surgeon, is 70! Dr. Baughman, my cardiologist, in phenomenal shape and a real powerhouse, clearly in his 60s.

The letter wasn't what anyone could predict.

On Nov 16, while out for his morning jog, Dr. B was struck by a car and killed. In a further irony (the first being getting killed while practicing what he preached) it happened in Orlando, Fla, where he was attending the American Heart Association Conference. The news reports on-line say that he was pronounced dead on scene, so the trauma must have been massive. I hope he didn't feel anything.

Dr. Cohn sent me to Dr. B in 2006, when my boss RL figured out that even the brainiacs at Harvard could screw up and had mis-diagnosed me. Dr. B was the major force behind finding the obscure diagnosis. In the next year and a half he had to again figure out what was going on, and to him fell the task of discussing the recommendation of a heart transplant if the third surgery failed. He was brilliant, devoted to furthering education and patient care. He also had probably the driest sense of humor I've ever encountered.

The last time I saw him was Feb of this year, he was smiling more than I had ever seen him, taking into account all the office visits as well as daily visits after the thoracotomy and two heart surgeries done at BWH. His smiling was so prominent that I commented on it: "Dr. B, I've never you seen you smile this much." He responded "You've never given me a reason to smile. Now that echo (heart ultrasound) is a reason!"

Dr. Ken Baughman was one of two men most involved in saving my life. While I was just one patient amongst the thousands he had treated in his career, I was a unique case. Of small comfort to me is that at least he saw his work on me pay off, saw my improvement exceed his wildest expectations. How many hundreds of people also have him to thank for saving their lives? His role in my life was so vital, which is why the entire time typing this I've been crying.
While my visits there are down to yearly, I'm really going to miss seeing him.

This is another time that you just can't figure out if there really is a master plan to life. Because he was one of the really, really good guys.

More on the other subjects later, Laurie

Dec 1: Zerla & Martha (the latter the longer part)

Zerla has had a rough few days. They called me from the vet hospital and told me the reason she was in so much pain was that the left knee had dislocated and wasn't going back into place--she must have been really suffering. So, she had her left knee done yesterday. Both rear legs, poor little fuzzy girl. The up side is that she has become the darling of the place; the vet techs tell me she's their therapy cat because she is so sweet and purrs like mad when they come over and talk to her and scratch behind the ears. The vets all say how wonderful she is. She's clearly sucking up a lot of attention and loving it! Since she's having problems moving around it seems best to leave her there for a while longer, because she'd be all by herself in a separate room here at the house and me gone all day.

After the last posting I went to bed, tossed and turned, came to a decision at 2 am. Thanksgiving morning I woke, showered, packed a suitcase, called my friend/tenant Marilyn and asked her to take care of the other three cats, called my mother and apologized for bailing on Turkey Day (we were just going to a restaurant and she can always eat in the dining room of the retirement home), called my boss and told him I wasn't going to be able to do on call for him or work Friday and started heading to New York. I called John and announced that I'd made a command decision and would be there in less than three hours. There was a second long pause and then a very relieved "Good". He said he wasn't going to ask me to come but was very happy I'd made the decision. He repeated this in stronger terms throughout the rest of the days I spent there.

After looking at Martha's labs it was almost impossible to believe that she was still alive. Her calcium had been sky high, her potassium and magnesium critically low. There is no logical explanation for her heart not stopping, because that's what happens with those abnormalities. The doctors had told John they expected her to die, he signed a DNR order, which prompted the call to me and the rest of the family. And yet by Thursday night she was talking in entire cogent sentences, Friday night she was discussing the undertones in Southern Gothic literature, which is beyond me on my best day. She continued to improve mentally, even from morning to night, each day.

I'll spare you the parade of people that appeared over the next couple of days.

The facts are these: the cancer is metastasizing (spreading) so rapidly in her bones that it actually pushed the calcium from her bones into her blood, the other electrolytes were affected because of the calcium. She is anemic because the cancer is affecting her bone marrow production. All the lymph nodes in her right axillae (armpit) are dead, so her right arm has lymph edema, which you usually hear about with women who have breast cancer. It means it is swollen to double the size of the left, the shoulder and armpit are excruciatingly painful. The CT scan done two weeks ago shows mets (cancer spread) to the right scapula, a couple ribs are almost eaten through, it's in her adrenal gland, pancreas, liver and left hip. The MRI a month ago showed three lesions in her brain. For those of you just reading about this, it began as lung cancer. She is only 51 years old, never smoked a day in her life, exercised, did yoga and has eaten organic foods for years. All of this has transpired since her diagnosis in April of this year.

Despite the pain, the now useless right arm (she is left handed) and the advancing of the cancer throughout her body, Martha still wants to keep fighting. She wants more chemo and more radiation. The oncologist explained that the best case scenario was that it would slow, possibly stop, the spread, but there would be no cure and no decrease in what was already damaged. While she could not repeat the basics of the conversation to me two days later she is otherwise completely alert and cogent. And she is adamant that she is going to fight the cancer.

It is beyond words to describe how much you can admire someone for their refusal to give in, but feel such overwhelming sadness knowing the futility. This is not a battle she will win. But she isn't ready yet to succumb, although the reality is the unwillingness to accept death. The unknown is still more terrifying than the known, however painful it is physically and mentally.

John has been an absolute rock through all this, has supported her, cared for her and loved her. There were moments when he was sitting on her bed and the two of them were just gazing at each other, the emotion and love actually visual. It almost felt intrusive being there. But John's pain will be unimaginable. They have two children, Lyle 17 and Emma 14, whose lives will be forever affected.

Many years ago, March 2001, John and Martha did their wills and legal paperwork. At that time Martha asked me to be her health care proxy along with John. She didn't want him to have to bear the burden alone, have to make decisions on her life and death by himself. Of course I agreed. When she called me early in October, knowing her cancer was back, she asked me again to be there for John, to help him make choices, to support him. I gave her my word, again. I would have done so anyway, but it was helpful for both her parents and brothers to know that my involvement was what she wanted, had been decided on years ago, in formal legalese complete with notary stamp. (If there were advertising on this blog it would be a great time for an attorney's commercial!)

John and I are in agreement that we will honor her wishes, although he understands as well that the cancer will win. But who knows what her strength of will can accomplish? Lots of people will tell you stories of loved ones who lasted months and months past their predicted death. While my cohorts in medicine all think we're crazy, it wouldn't be right to deprive her of what time she has left--on her terms.

She wanted me with her, helping with the toilet and washing her. I suspect she remembers my repeated comments about the low point for me being unable to wipe my own butt and wants someone who understands the indignity of it it all to be helping her through it. Her last comment to me before I left Sunday was that I was her inspiration. What the hell do you say to that?

The next issue will be where she goes once she can be discharged from the hospital. As of this writing she is unable to get out of bed or up/down off the toilet without assistance. That would make coming back to the house involve a hospital bed and nursing care. It turns out that things have changed dramatically and you can actually be in hospice while still getting chemo and radiation. While we know she won't accept that idea at this point, my suggestion to John was to present it as a temporary thing, that she could go off hospice when she improved but that it gave more options for her care now. We'll see how that flies.

I'll be going back up again after work Thursday night to be there on Friday for conversations with doctors, case managers, nursing, etc. At this point we can only take things one day at a time.
There is nothing that anyone can do, but I ask for your prayers and love for my family at this time. Regardless of what happens when, the next couple of months are going to be very difficult for all of us.

Thanks for checking in, Laurie

P.S. It's time for all you 'lurkers' to show yourselves and leave a comment--please! It will be easier for me here than individual e-mails.