This morning I know why it was incomplete.

My mother passed away around 6AM this morning.

While I am saddened and know I will miss her horrifically, I am relieved that she no longer will suffer. I’m also glad that her final days did not drag on for months and that she lived them in her home with family and friends around her. That is how she wanted to go.

In Loving Memory of my Mother and Friend, Linda Decoteau –

January 18, 1944 – May 30, 2009

At that point the plan was to stay the course with radiation and to have her go to a nursing home for rehabilitation during radiation.

Things didn’t go as planned. She did get to the nursing home and to the mapping appointment for the radiation. However, the following day she developed blood clots in the left leg (the leg without the cancer).

She was taken back to the hospital to resolve the clotting issue. Meanwhile, she was becoming more and more disabled by the cancer. By this point we knew that radiation was simply a palliative measure that might allow her to walk again. But we also knew this was not going to be a cure. She got to one radiation treatment while in the hospital.

The weekend of May 16th, Mom ended up in intensive care. Apparently, she almost did not make it through the night.

The family was all at the hospital on Saturday. The doctor sat the family down to discuss Mom’s prognosis and plans to move forward. The doctor used the term “actively dieing” to describe her condition.

This seems like an oxymoron to me.

On May 20th we brought Mom home from the hospital on hospice care. She was sooo excited to be home and perked up for the first few days.

She is on oxygen and has good days and bad. We are trying to keep her as comfortable and lucid as possible without causing her discomfort.

We have a home health aide living at the house around the clock. She seems to be good for mom but occaisionally needs redirecting.

The docs plan on starting her on radiation this week. On Tuesday, they will do the mapping which pinpoints exactly where the radiation should go. This is localized radiation.

She is really having trouble getting around because of the pain. It is my understanding that the radiation will relieve that pain nearly immediately.

Once she has completed a two-week (10 days with weekends off) course of radiation on the hip they want to start her on chemo. As I have posted in the past she is resistant to idea of chemo. The doctors had been holding off on the chemo because of her weight loss and to give her more post-surgery time to get healthy. Now that they know the disease has spread they really feel that she can not hold off.

She is eating better. She has gotten past the nausea and has been eating well. I’m not sure she has gained any weight but at least she is eating.

This week should be a busy one. She is scheduled to have the correct catheter inserted tomorrow, mapping on Tuesday and first radiation treatment on Wednesday. I am hoping they keep her in the hospital through the first radiation treatment but I expect she will come home toward the end of the week.

Since putting the one tube in, her creatinine levels have returned to normal and the infection seems to be under control.

She is still having trouble with pain and she isn’t eating well. She had a consult today with the nutritionist. I am not sure how successful that was. She argues that eating healthy is not conducive to putting on weight. I contend that currently, putting on the weight is more important than worrying about sodium and processed foods. I agree that in an ideal world, these are not the best dietary choices but in her malnurished condition anything is better than nothing. However, I can’t make her eat what she doesn’t want to eat.

She sounded better today than she had the past several days. I guess that is a positive.

I will be going back to PA before her next procedure on Monday. I think we are looking at the middle of next week before there is any possibility of her leaving the hospital. I’m not sure if they will send her to assisted living for a couple weeks or if they will send her home. I guess we will wait and see.

We had all been to her home on Easter to spend some time with her. She had started a new pain med (Baclofen) on Saturday and was complaining of dizziness and vomiting late Sunday afternoon. She said she was going to go lie down. She was still resting when we left her home. We decided not to bother her. I had gone up to talk to her about an hour before leaving.

After several attempts Monday by Dan to reach her by phone, he decided to go check on her. This is when he and his wife Donna found her. She obviously had not gotten up since the day before as she was wearing the same clothes she had on when she went to lie down.

It would seem that a series of events collided which resulted in her condition. First, she was severely dehydrated, she also had not been eating like she should. She started the new medication which it turns out she was taking too much too soon. She had also been taking Advil for several weeks to help with pain. The Docs suspect the Advil had become toxic in her system. Plus, she apparently had two bacterial infections brewing and her kidneys were not draining properly. A recipe for disaster.

Monday evening she remained unresponsive. She could nod or shake her her to answer some questions but it is unclear if she understood the questions. I don’t know if she knew me on Monday night. I thinks she did but couldn’t respond. I believe this to be true because when the neurologist asked her if she knew who I was she began to cry.

It would seem that she was able to comprehend some of what was being said but she was incapable of speaking.

By Tuesday morning she was giving one word answers and said “hi” to me. I had been sitting there for hours listening to her moan, wondering if this was who my mother would be from then on. When she said “hi” and nodded her head acknowledging she knew me I was sooo relieved I just began to cry. I knew she was far from where she needed to be but she was showing progress.

By Tuesday afternoon she was putting words together in the form of sentences and by that evening she was conversing a bit. She was still having trouble articulating thoughts and was clearly still confused but she was speaking. She was still having spasm but she wasn’t balled up.

She has improved each day.  

According to Nephrology, Mom’s creatinine levels have come down from the level they were at Monday but not significantly since yesterday. They are turning her back over to the Dr.R since the problem is blockage rather than a matter of kidney function. Apparently that makes it a urology problem not a nephrology issue. They did speculate a bit and said they thought Dr. R would probably have Mom get another ultrasound and depending on the outcome of that he may decide to do the nephrostomy on both kidneys. Mom says, if they are going to do that she is going to need to be knocked out before they take her down for the procedure.

Her MRI was unremarkable which means no permanent brain damage or stroke. That is good news and Mom sighed a big breath of relief. She is however having trouble with fine motor functions. I noticed this yesterday and things weren’t any better today. She has strength in her hands and has no trouble grabbing my fingers and squeezing. Her grip is good. But she is having trouble with tasks such as holding a pen, picking up silverware, opening a bottle — the little things. I will mention it to the Physical Therapist tomorrow. I think she may require some occupational or physical therapy for this. She walked without assistance today and did some leg exercises.

She is still having some cognitive difficultiesparticularly in the area of time perception. She has trouble determining if something happened today or days ago. She also knows the date but doesn’t know if it is before or after a meaningful date such as my brother’s birthday. But at least she knows the month and year now. She didn’t know that as recently as this morning.

They are treating the infections. The good news is they can treat both with the same antibiotic. They also allowed me to take her out of her room today and out to one of the gardens. It was a lovely Spring day and she enjoyed the fresh air.

Monday, Mom had an appointment with Dr. R to have the nephrostomy (kidney) tube removed. She is still having trouble with the stoma leaking, particularly at night. She’s also struggling with pain management. She has good hours and bad hours. Yes, hours not days.

The folks from her church have been terrific with bring food to the house for her. Almost everyday someone brings her dinner. People must really like their sweets because almost everyone includes a dessert with the meal they prepare.

Right now there isn’t much more to report. Mom is trying to get some normalcy back in her life but that is not so easy because of the pain.

I am planning on going home in the next day or so and not coming back until the end of the April when she has her follow-up with the oncologist. I don’t know how well this is going to work out but I have some health related stuff I need to attend to and I just need a break. Also, if she does chemo she is going to need me until we know how she responds to it. I need to get my strength back up.

Today we went to meet with the oncologist. This was the first we had seen her with the exception of the couple times she came to see Mom while she was hospitalized.

First off she went over some of the reports she had from Mom’s recent CT scans and the pathologist report. Most of what she had to tell us was encouraging. First, there is no new cancer showing on any of the CT scans that were performed on March 12th — but we already knew that. However the report from the pathologist that she went over with us differed from the preliminary pathology report we had been given right after Mom’s surgery. According to the final pathology report two of six lymph nodes removed from the right side tested positive for metastatic tumor. One on the left side closest to the bladder also tested positive.

So what does all this mean? She recommends that Mom have chemotherapy as a preventative to future cancer. However, she wants to wait until Mom gets some of her strength back and hopefully gains a bit of weight. She also feels Mom needs to get the pain under control before moving forward. She suggested that Mom might want to consider seeing someone who specializes in pain management.

All this being said, we didn’t get into the specifics of the chemo all that much. It is all extremely confusing any way. She did say the combination of drugs she would use is Cisplatin and Gemcitabine and that it is a 3-cycle course of treatment. That translates into about two and a half months.

I wanted to know statistically what the reoccurence rate is with and without chemotherapy. She says that without chemo the chances of reoccurceare about 50/50. With treatment her chances of reoccurance drop by 30-40%. Because I write and am no math genius, I think that means with treatment she is at a 10-20% recurrance risk. See I do words not numbers. I told you it’s confusing stuff.

We are scheduled to go back and see the oncologist in a month to reevaluate Mom’s condition and readiness for chemo.

Also, we learned today that during her surgery her appendix was removed. We didn’t know that was part of the procedure but I don’t think she will ever miss it. Not only that, now she doesn’t have to worry about appendicitis.

Finally, a woman from mom’s church brought food over this evening. She brought enough for a small army — salad, entree, dessert, the whole works. And she didn’t bring just a plate, it was the whole cake, a big tray of food, a loaf of homemade bread. We are going to need to freeze some of it. This way Mom will have food when I’m not around.

As I had suspected, she did have the procedure to put the tube into her kidney to allow the urine that was backing up to drain directly into an external pouch. She says the procedure was horrendous. The anaesthesia had not kicked in before the doctor began the procedure and apparently the doctor performing the procedure wasn’t going to let that stop her from proceeding.

Aside from the pain of incision for the tube, the doctors accomplished what they wanted which was to relieve the pressure in her left kidney.

Her last few days in the hospital were not without complications. They tried catheterizing and leaving the bag off but that didn’t work. So they had to go back to the bag for the bladder. So she had the ostomy bag and the nephrostomy bag.

When they released her from the hospital on Monday March 16th she had both bags.

She has been in a great deal of pain with all of this. Much more than expected. At this point the doctors believe the pain is a byproduct of her RSD (Reflex Sympathetic Dystrophy).

At her follow-up appointment with the doc on Friday, the nephrostomy bag was removed and the tube plugged. As I understand it the tubes were not removed in case there were further complications which might require them.

Dan and family have been staying with her since Thursday night as I needed to go back to NJ for a medical procedure of my own. I plan to go back tomorrow. Wednesday we have an appointment with the oncologist. This is the appointment she missed two weeks ago because she was in the hospital.

I know people have been checking and not seeing any updates so let me try to bring you all up to speed.

Saturday, Mom was in terrible pain and there was trouble with blockage when catheterizing. She also was leaking urine from around the stoma. She was able to get some relief once they changed her back over to the bag which allows the urine to flow freely provided the mucus doesn’t clog the line.

Sunday and Monday she seemed to be doing better. However, Monday her lab work that was performed when she came into the ER showed she had an infection which they were calling Urosepsiswhich is basically a severe urinary tract infection. Apparently not uncommon with surgeries like the one she’s had.

Tuesday they did more blood work and determined she has Vancocynycin Resistant Enterococcus or VRE. This is like a ”super bug” in the sense that  it is resistant to a particular strain of antibiotics. Again this infection is often associated with invasive abdominal surgeries. But because of the potential severity of this she was moved to her own room and “quarantined.” I put that in quotes because she was not quarantined in the sense we usually think. She was still allowed visitors. Initially, they were requiring visitors to gown-up before going in to see her but that restriction was removed rather quickly.

Wednesday, I headed back to PA because we were scheduled for a consult with the oncologist at 3pm. I arrived around 12:30pm and the appointment had been cancelled since Mom was still in the hospital. This still baffles me since the oncologists office is in the building attached to the unit my Mom is on. I would have thought the doc would have come over and did the consult in Mom’s room or that we could have wheeled Mom over for the appointment. But they wanted me too reschedule the appointment once she is out of the hospital. This makes no sense to me but what can I do?

It may have been just as well that the consult was cancelled because that severe pain Mom had over the weekend started to return Wednesday afternoon. They had gone back to catheterizing her every few hours rather than having her on the bag.

Because her pain was in her low back and kidney area the docs decided she should have a CT scan done to make sure everything was functioning correctly. The scan showed that there was urine backing up into the kidneys. More on the left side than the right. The dr. came in and flushed Mom’s lines real good and put her back on the bag. He ordered IV fluids for her and convinced her that she really needed to have some narcotic pain relievers because nothing they were giving her or could perscribe would even touch the pain. She gave in.

I left the hospital at 1am on Thursday morning. They planned to do another CT scan in the morning to determine the severity of the blockage from the kidney and to make a determation as to the best course of treatment.

The scan showed she was still blocked and the docs recommended she have a small tube inserted in her kidney through a half-inch incision in her back. I knew when I left the hospital in the wee hours on Thursday morning that there was a real possibility that this would be the treatment course. So by 7am I was back at the hospital. Mom was just getting back from radiology.

Once te radiologist and her physicians looked over the films, it was decided that the tubes should be put in to relieve the pressure in the kidneys and to give the urine a way to drain until they could resolve the blockage which appeared to be in her uretures. This could be a result of scar tissue or swelling but it is hard to say with everything being inflamed.

The best news from the CT scan was the fact that it did not show any new cancer.

So she was going to have the procedure. They were ready to take her down around 2:30pm. She decides to mention that she isn’t in any pain and she had not had any pain medssince 12:30am. I had no idea she had not had anything for pain because she was so dopey. I assumed they had loaded her up with painkillers before I came in the morning. Wrong.

So, they get her down to radiology and they go over the procedure again with her and why it is necessary. Now this is the fourthtime it has been explained. She decides she is not going through with it. She says she just feels like she cant undergo another procedure today. So, back to the room we go. I knew full-well that it wouldn’t be long before one of the doctors was there explaning to her the need for the procedure. Yup. I was right. Dr. Flashner was there within the hour. He went through all of it again and explained to her that the reason she may not be having pain is due to a small tear in the bladder that has allowed the urine to leak into the abdomen thus releasing the pressure. He also explained that urine leaking into her abdomen is potentially more hazardous to her health that the tubes.

When I left the hospital today, exhausted from the events of the past 30-hours I think she has decided she would have the tubes put in tomorrow.

I talked to her briefly around 10:30pm and I am no longer sure she is going to have the procedure. I guess I will find out in the morning.

Happy note: Late this morning in another local hospital my friend and her husband gave birth to a baby boy, 8-lbs 11-ozs. He is a cutie!