Finally an Update or ... How is Janet Anyway?

Sit down and make yourself comfortable because this is going to be a long blog. To steal a line from Steve Jobs 2008 Macworld Keynote Address "there are four things I want to talk to you about today." Lets start with the How is Janet question, then I will get to the others.

How is Janet?

In general Janet is doing well. The last paracentisis (draining of fluid) produced a much more dramatic result than any previous paracentisis. Janet got a whole week of being able to retain most of the calories that she consumed. This is excellent because at this stage of her disease we are really in a battle of calorie retention. Not the calorie battle most of us are fighting which is to limit the amount we are taking in. In Janet's case we are trying keep in as many calories as she expends each day. After paracentisis this is relatively easy because most of what she consumes stays down. However, the calories she consumes during the week after paracentisis and before she fills up with fluid must sustain her until the next paracentisis which is currently scheduled for Valentines Day, February 14th.

Once Janet starts to fill up with fluid she loses much of what she takes in with the exception of water and clear liquids. This is likely because of a combination of mechanical issues, water pressure on her stomach and diaphram and physiological issues, partial bowel blockages being closed down even further by water pressure. Every now and again there are rare exceptions to Janet losing much of what she takes in. Yesterday was an exception because she kept in one and half boost drinks and a small salad with dressing and some nacho chips and dip while watching the last quarter of the superbowl. This is in stark constrast to the previous two days where nothing except water, ginger ale and gatorade stayed down. Not surprisingly Janet's energy levels fluctuate in direct proportion to the amount of calories she takes in, so she is a bit livlier today than usual.

I do need to point something out about Janet's general state of livliness which I have noticed. Janet is very thin, I suspect that most people by the time they reached her state of disease would be completely lacking in energy, very slow moving and with low levels of mental alertness, slow answers to questions and perhaps some confusion etc. This really was the case with Janet before the last paracentisis. Since the paracentisis she has perked up quite significantly. She is definitely weak. For example she needs to rest for about 5 minutes after climbing the stairs in our apartment. When talking to her though, you would think there is nothing wrong with her. She is as sharp as ever. She also moves quite quickly for a person who is as thin and weak as she is. For instance she moves between our bed and her hospital bed (which she uses as a day bed as it reduces the back pain she sometimes suffers from) very quickly. She sits up quickly. Its almost spooky to watch someone as thin as Janet who is still functioning at such a high level. I think if you take another look at the picture at the beginning of this blog, you will agree it proves my above point, it captures her mental state quite well.

This brings me to the next thing I want to talk to you about which is where we go from here with Janet's health.

Health Tactics

Quite frankly 3 weeks ago Janet did not appear to have long to live. Her physical and mental energy levels were low and honestly her quality of life was not particularly good. Since then she has had a bit of a dramatic turn around. Physically not much has changed except that she has consumed more calories and has therefore increased her energy levels. The most marked change is mentally. She is more alert. She is back to reading books, magazines (something she had pretty much stopped doing). She is watching American Idol and insisted she saw the first episode of Lost (live not recorded.) As a result her quality of life has also improved quite a bit. The objective is still to make Janet's life as comfortable as possible but we are going to try and make some small changes in tactics as follows:

1. Transfer Janet from the Burnaby General Hospital Cancer Clinic to the Vancouver Cancer Clinic so that paracentisis is only a 5 minute cab ride away instead of a half an hour car ride.




2. Try and get the paracentisis schedule moved up from 3 weeks to 2 weeks. There is a risk that Janet may fill up more quickly by doing this but at this stage we may well get more days of keeping calories in, which on balance is a good thing.




3. Try and arrage for bloodwork that needs to be done prior to paracentisis to be collected from home. This saves one of the 2 hospital trips that normally accompany each paracentisis cycle.

In addition I have realized that I am going to have to do a better job of pacing myself as the primary care giver. I can be the 7 by 24 nurse (or butler as I prefer to think of myself) for a few weeks, but I don't think I can keep this up for months. I am going to have to get better at delegating, and getting out of the house, when help is around. Luckily with my parents in town and Marilyn's visits, help is quite often around. Iwill also try and work out some kind of better coverage schedule including home care support with the help of the VCH pallative care team. More to come on that though as I further develop the plan.

Next I would like to give you a brief run down on what Janet has been doing with her new found energy levels.

Janet's Recent Past (the partying is over but she still has fun !)

Much of the past week and a half has been family time intersperced with a few visits from friends. When Marilyn was here, Janet and Marilyn concocted up some nice family dinners. Janet came up with the menu and recipes, Marilyn did the cooking and I did the shopping and we all did the clean up. It all worked out quite well. Saturday was my Mom's xx birthday (I can't put the number in here because she wouldn't want you to know what it is.) We celebrated it by eating beef stew, which Mom brought over, and by having champagne and cake with Janet. Janet's Dad has been over to visit quite often. The twins (our niece and nephew Michael and Chanel) pop by on Friday's (somehow they have managed no college classes on Fridays, who knew.) I usually put them to work around here and they are happy to help out. John Nicholson (the twins Dad) pops by frequently and sometimes John and I just sit and chat for a while. Dave and Stephanie, Marilyn's husband and daughter have also been over for a visit. Its all been high quality family time and we have been really lucky to have had the opportunity to fit all of this in.

So that brings me to my last topic which is what happens next ....

What Happens Next

There are a lot of things that happen in this wild and disorderly event called life that we really don't understand and cannot predict. Janet getting ovarian cancer in the first place is but one small example. Realistically Janet is at high risk for a number of things to happen which could end her life quite quickly. If those things do not happen, eventually she will suffer digestive system blockages that will eventually end her life. It could be weeks or months. No one knows. Its very important that when she is feeling good that Janet enjoy her life as much as possible. Janet needs time for herself, her family and for her friends. Visiting does use energy which is in short supply.

If you haven't visited Janet and would like to, please send me an email with your preferred time and date and I will put it in the calendar. Its best for Janet if we can keep the visits to no more than half an hour as she does get tired quite easily. Please do not bring food or flowers we have enough. If you must bring something bring reading material, magazines or books or even old pictures. Janet loves looking at old pictures of times and parties past. We are going to restrict visiting days to Mondays and Tuesdays only and no more than 2 visitors per day in order to conserve Janet's energy. If this really does not work for you and you need an exception you can let me know.

Thank you to everyone for your love and support through this difficult time. I will continue to use this blog to keep you posted on my lovely wife's progress and Janet and I will both continue to track your messages of support. You do not need to log in in order to leave a comment on this blog. Just tick the anonymous box but your name in the comment so we know who it is from.