The Recovery continues

August 14, 2011 (Sunday)

 

Good morning / afternoon / evening everyone -

 

As you will read the type of lesion that Laurie had mostly removed is quite rare. It is often perceived that having something rare or different is a good thing - it makes one a more unique and sometimes, interesting, person. Imagine that you are the only one on your street with a place in the Loire Valley that you prance off to when the urge hits to taste some new vintages. Or, if it is a nice day, you take that Porsche Carrera GT2 RS out of the garage and clean the carbon out of the engine.  But, in the medical world, being rare is not probably a good thing to be.

 

Consaul - now that is a pretty rare surname. In fact, across Canada there are only some 25 to 30 persons with that name. The origin is apparently Pennsylvania Dutch. Checking one of the larger genealogy websites produces a count of 268 persons with the surname of Consaul. Of this number, 73% are in the USA and 27% are in Canada. This makes my estimate a little low by comparison. However, the fact is, you could probably fit all of the Consauls into Don Cherry's for wing night and still have loads of room for the hockey game crowd.

 

If you looked at the names of the entire world population of 6,775,235,770 (World Bank -2009) then I presume that you would find just one Laurie Consaul. In percentage terms this is 0.0000000146% rounded up. The only percentage that I can think of as being smaller is the rate my credit union is paying on my savings account.  If you have Googled your name (and why wouldn't you have already done so), you will likely be surprised at what comes back. For me, I find it interesting that so many hits have been returned. Those at the top of the list are certainly for Mark Armstrong but there are many of us with this name. To find something actually relating to me you also need to enter some strange statistical term in the Google search function.

 

Searching for Laurie Consaul is easy. What gets returned is for her unless it is some strange combination of the words "Laurie" and "Consaul" referring to something completely different. There are pages of stuff.  You don't need to enter a middle name or initial to know that it is her. A diverse number of topics and interests appear within a few seconds unless you are still using an IBM 8088 or Hyperion computer. I find it amazing that this functionality is there - for us to use for whatever way we like. Of course, you need to filter out all of annoying pop-ups and silly advertisements. My thoughts about all this? I simply want to see more entries appear when Laurie's name is searched in the years to come. She has such promise in everything that she does and wanted to pursue.  She is unique.

August 10, 2011 (Wednesday)

We were looking forward to the day ahead. First we had the speech therapist in for her second visit to the house. She is still evaluating Laurie's abilities and will then develop a program to work on specific weaknesses. It is amazing how much I pay attention to what and how I am speaking when the therapist is talking to me. After about 30 minutes, Laurie's interest declined and the session ended on what would be a medium note. Laurie is scheduled to have her third session next week. The first of two appointments of this day were over.

 

We were to meet Dr. M., the radiation oncologist at 14:30 for a consultation. We arrived at the General Hospital about 30 minutes before to register Laurie and get acquainted with the layout of this hospital. It is much like the Civic only there are bowls of colourfully wrapped candies in various places. I believe these are for both the staff and the patients.  The waiting room was quite comfortably arranged with nice leather or leather-like furniture. The seating does become somewhat uncomfortable if you were to sit there for say, one hour and 20 minutes. Which is of course exactly what we did. What bothers me the most about this, and it is not the fact that I had already reached the maximum for daily parking, is that someone could have called us and told us that Dr. M. was running late; or possibly a marathon and was only half way through. A quick telephone call could have saved us all of that waiting time.

 

We were then ushered into a consultation room and again the waiting continued. It was about 25 minutes later that the doctor came in and we began the discussion of Laurie's illness and the radiation program that he would be providing. Depending on a large number of factors, the radiation treatments can be quite varied. In Laurie's case, she will be having a treatment Monday through Friday for six weeks straight. The actual radiation bit takes about five minutes. The preparation time and the winding up time takes about one hour for each session. This hour does not include the waiting room time of course. This treatment could take place in one of two hospitals. Our preference is the closer one to home but only time will tell. It was nice that the doctor did apologize for his being tardy as we concluded the meeting.

 

There may be quite a few side-effects as you can imagine. Again, everyone responds a little differently. Expectations are that things like swelling, redness, loss of hair, tiredness and nausea may occur to different degrees. This is more or less how I feel coming out of a tough meeting at the office. The side effects of radiation are typically most acute after the first few treatments. So, the main thing is that there is a radiation team in place for Laurie. She requires an MRI to start with and then some sort of mask is created that will accurately line up the radiation equipment to focus on her tumor. Also of importance is that the mask keeps her head absolutely still during the sessions.

 

Off home during rush hour and in a monsoon. My sugar level was running a little high (I can't imagine why) and we just wanted to get home and rest before some dinner. What ever happened to the notion that there is no rush-hour in Ottawa in the summer months?

 

August 11, 2011 (Thursday)

After yesterday's marathon wait at the General Hospital, we were a little tighter on the scheduling. A new route to the hospital got us there about 10:30 which was 30 minutes before the appointment. At 10:40 we were called into the consultation room. This was wonderful. However, the consultation room is essentially the waiting room without lots of people walking by you and complaining about the delays they had with their appointments. So, we waited until 11:10 and a doctor came to talk with us and have Laurie do some physical movements. This was the not the doctor we were expecting. The other doctor, Doctor N. would be coming in later. So, Laurie was asked lots of questions to ascertain her level of memory recall. She still has some problems with knowing what season we are in and recalling words that the doctor has given her to memorize.

 

Then Dr. N. came in and not surprisingly asked some similar questions that Dr. S. just did. I don't believe that this was part of any memory testing however. Dr. N. took us through in some detail what chemotherapy was about. In the view of the doctors working with Laurie, the radiation is the primary treatment. The chemotherapy is useful in targeting the bad cells that are not really next to the lesion that remains. To attack these with radiation is just not practical. So, beginning with the radiation Laurie will be taking one pill each day after taking another pill used to help with the nausea that the chemotherapy drug usually induces in patients. This means one pill each day for six straight weeks. Then after the radiation stops, she will continue for about six months with the pill but only five consecutive days per month. This is probably because unless you are addressed as "Sheik" or "your royal countess" or some other rank of royalty, you can not afford the pills for the other 25 days in the month. Yes, the chemotherapy drug is very pricey. Now I understand why it is so difficult for some people to find the money to pay for their hospitalization and subsequent recovery.

 

In talking about Laurie's illness, Dr. N. said that only about 0.5 to 1.0% of all brain tumors are like what she has. When the doctor in the Civic Hospital told us that what Laurie had was rather rare I now fully understand. The issue here is that with so few persons having this there is little in the way of clinical studies having been done. Therefore, issues like side effects and recovery times are not that well understood or reported upon. All information is useful to us at this point. I can surf around and see what information there actually is out there that I may be able to understand.

 

The rest of the day was basically resting and then an episode of Poirot before formally retiring. Tomorrow is free of appointments which is good for her. Two consecutive days of being in town with appointments does negatively impact her energy level.

 

August 12, 2011 (Friday)

It was three weeks ago that Laurie's journey began with a trip to the local hospital. It is incredible to think that so much has happened to her, to us, since then. We spent the first two weeks in the hospital and it was one week ago today that we came home. Laurie had her second visit from the home care person who remarked after the three hour visit that Laurie was looking stronger. This is of course encouraging. Laurie and her visitor sat out on the front deck for about an hour after I had left for Ottawa. Her being outside is another positive thing and I am hoping that she does this on her own initiative.

 

I drove to the green house in Ottawa and trimmed all of the plants that she has there. I must admit that a second career as a hair stylist is a definite possibility. Those plants look great now and apparently will be healthier for having had the trimming. I don't recall if I was talking to them as I worked but I may have. Laurie feels that they may need some follow-up attention in about a month's time. I am thinking of us visiting there on August 22nd after her appointment at the Civic Hospital. She has an early morning MRI which will be used to direct the radiation oncologist's plan of attack. This means that her radiation treatment will begin that week at the earliest. So as of now, her schedule for next week is relatively light. I had hoped for an earlier radiation start date but I think that so far we have been very fortunate in getting her the services she has required.

 

August 13, 2011 (Saturday)

Saturday in Oxford Station is usually pretty quiet and today was no exception. We did the usual morning routine and decided that we would go the pharmacy to pick up some things. Included on the list was her chemotherapy prescriptions. The pills were special ordered but I assume these arrive by the next day, which they were. I went in first to do some boring post office stuff and to get her prescriptions. The pharmacist assistant came over and when told the surname had the pharmacist come over to talk with me. The first thing I went over with her is that there are three containers with the same drug but in different doses. Laurie's dosage will encompass different numbers of pills from each of the three different bottles. Good thing that I am reputed to be good with numbers. The anti-nausea pill is much more straightforward as long as you remember it is taken before the chemotherapy pill.

 

The drug amounts were entered into the cash register, or computer, and a total of just over $2,090.00 came up. Ouch. And most of the cost is already covered by her work insurance. The pharmacist took the VISA card and put through the transaction. Having almost completed the transaction, she asked if I had the card from the doctor that basically waived the fee for the chemotherapy drugs. Uh? "Yes" she said. "Right here, you see this code. It means that you should have gotten a card and you would not have to pay not very much at all". So, I am thinking two things. The first is "Why was I not given this card if it was on the prescription?" and secondly, "How much is "not very much at all"? The first question the pharmacist could not answer. I will need to call the radiation oncology people on Monday to find out what is up. She did answer my second question. "About $2.00". So, what may be a simple oversight by the hospital staff could have cost me over two thousand dollars. Once paid it would be virtually impossible to get the money back. So the drugs are still at the pharmacy. It is a good thing that they are not immediately needed. Knowing they are there is the most important thing. This helps to substantiate my feeling in that the biggest issue with our hospital experience continues to be communication related.

 

August 14, 2011 (Sunday)

Today has been pretty much the same as all the days that we have been home. Warm, calm, smell of rain in the air and occasional thunder in the distance. Good summer weather if you don't feel like doing much. Laurie's perfect recuperation type of week. Any minute progress is better than anything regressive. She had some visitors today who all remarked that she is looking stronger than the last time they saw her. I would have to agree. We now have some additional good food in the house thanks to those who made the Sunday drive to Oxford Station - thank you kindly for that.

 

The swelling now is basically gone as is the discolouration. I think that she is noticing this as well when she looks in the mirror. She has never said anything about the scar though which is somewhat intriguing. Her hair is growing very quickly over the part that was shaved for the operation. I believe that she has had more hair growth in the past ten days than I have had in the past ten years!  She is able to fully shampoo her head which is refreshing and makes her pleased. The hanging sentence is still something that I am wondering about. This is something that the speech therapist will be asked about during her visit this week. She will begin to say something but not be able to complete the thought.  I am noticing more of this and I simply let her try to continue and do not ask her what she meant.

 

Tomorrow was to be the first day of our move to Newfoundland.  Some of you may not have known this but we were planning on this move since the spring. I have emailed the moving folks and re-emailed for a confirmation that the move was cancelled. So, I fully expect that sometime tomorrow morning the packers will arrive with tape and sharpies in hand. I don't know if I would place on wager on this but time will tell if I could have made myself some beer money.  The move is something that I do not talk to Laurie about and she does not either. A lot of our household things have actually been boxed up and stored. This was an undertaking that consumed us for the months of May, June and into July. Things like books, clothes, nick-nacs, stuff we never used, etc. are now not readily available. I can't believe that we packed 237 boxes and still have stuff around. We have less clutter and less of everything like under the kitchen and bathroom counters. Much of this stuff was thinned or tossed or sent to a museum. I think that some of our bathroom articles have expiry dates in Roman numerals.

 

So an early night for us, and especially for one of us in particular. Raining lightly and serene in the Station. Enjoy the week wherever you may be.

 

Good night from Oxford Station -

 

Mark