Merry Christmas from home!

 

Laurie is now home. We left the hospital on Tuesday evening (Dec. 20) moving slowly along the corridor in a wheelchair. She is much more comfortable at our home and is enjoying peace and quiet that simply can not be found in a hospital ward.  I am so glad that she is home for Christmas. We received about 1 to 2 cm of snow last night which hopefully will remain to give us a white Christmas. Our new year begins with an appointment with the chemotherapy oncologist. There are no plans for further radiation that I know of. Laurie will need to continue to battle hard, so very very hard, in 2012. I will endeavour to keep the blog up to date as much as I can. This depends on many things of course - the first being to help Laurie in whatever it is that needs to be done.

 

Thank you to those who have supported Laurie in one way or another since July when her illness became known. Whether it be an email, a telephone call, a card or flowers Laurie has been receiving these messages of hope, prayer and best wishes with interest. It helps me to know that so many people are thinking of Laurie.

 

Enjoy your holiday season and we offer you our wishes for a happy and healthy new year.

 

Best regards and Merry Christmas from Oxford Station -

 

Mark and Laurie

communication is key!

I have formulated some conclusions based on extensive empirical study. One - two out of five nurses are competent enough to nurse. Two - common sense and communication, particularly by nurses, is so important but also so very lacking. Three - time budgeting is a mystery to which no adequate or convincing explanation has been given. Four - the ratio of nurses to patients does not mean a whole lot. And fifth, stay away from the grilled food in the cafeteria including the visually and olfactory appealing stir-fry dishes. The experiences of today only served to support these conclusions.

 

However, the main subject of the update is of course Laurie's present health. Much has happened since the last posting. Laurie was moved to the seventh floor Neurological Inpatients Area on December 12th sometime after I had left that evening. There was some scuttlebutt about the NOA that Laurie would be moved but this had been cancelled on at least two occasions when I pursued the subject. Apparently, the cost of having a patient in the NOA is $1,200 per day. However, my information source may be as reliable as some of the nursing staff and be way off (OK - I won't dwell on this topic...).  So, arriving on Tuesday, December 13th I found myself in Laurie's room which offered a nice view towards Agriculture Canada. She knew this and realized that her grasses were close by in a green house.

 

Now being up on the seventh floor Laurie was set to receive some physio and occupational therapy. She has had visits by these people each day since being there and in the eyes of these people she is getting stronger and healthier and able to indicate progress in several areas. Her appetite is very good with three pretty good efforts each day at eating the food which is typically ground - ground chicken / beef / turkey with mushy peas / carrots / broccoli  and cream soups of the mushroom / carrot / broccoli variety. She is consuming a high protein liquid beverage produced by a major pharmaceutical company in Canada. She is eating desserts - usually a fruit (pieces or in crisp form) and a pudding / Bavarian mousse. Fruit juices prevail as does milk and water. The feeding tube that Laurie endured for so long was removed on December 15th. It seemed that the removal of the tape caused her more discomfort than did the removal of the 70 mm length of plastic hose. I sort of watched the on-goings here but was just happy that this day had come and she turned another corner. Generally, she remains very quiet but seemingly to understand or follow a conversation. Her speech was the most difficult element to come back after her first operation and it appears to be the hardest as well now.

 

We had a visit from a staff member of her radiation oncology team and also from the chemotherapy oncologist himself. The main point of what I was told was that Laurie's surgeon and the oncologists were laying out the ground work for the next step(s). At this time the plan has not been disseminated to me. However, it seems that Laurie may have more of the Temodal and for more days in a month than the previous session of receiving it (five days each month). I did ask to speak with the surgeon today (Dec. 19) and apparently he would see me late this afternoon. However, he did not come by the room. Hopefully he will tomorrow and I will be able to get answers for the five questions I have prepared.

 

On Saturday, December 17, Lisa, (ed. note: Laurie's sister), returned. I told Laurie the day before that she was to have a visitor on Saturday. About 10:45, Lisa arrived. Laurie opened an eye a while later, but did not recognize her and she drifted back to sleep. An hour later, at lunch time, Laurie realized who was there and she smiled and seemed quite pleased. During Lisa's vigilance, I snuck out and got the oil changed in the car and had some lunch in the cafeteria (the lemon sole is recommended). As is typical, Laurie is not alone until past 19:30 or so. Earlier in the week, I left at 23:00 as the nursing staff must have been attending a conference or a Christmas party someplace and there was no one to help her (sorry but I can't help this.)

 

Lisa drove up to the hospital first thing on Sunday morning (Dec. 18). She was there to get a great parking spot and to assist Laurie with breakfast. I did a fairly massive shopping expedition to the local grocery store. What a good time to shop actually. There were as many store employees working as there were customers. Not only did I get the choice of a great parking spot and some the vegetables, I actually was able to buy some stuff on sale that usually has been long gone whenever I shop. So, a few hundred dollars later (about five carry bags worth) I headed to the house and found space in the refrigerators and freezers for everything. Then, I was off to Ottawa to join Laurie and her sister.

 

We had a nice time together. Lisa departed in mid-afternoon for her drive back to Gravenhurst. Fortunately, the weather here has been amiable to driving but it sure does get dark here fast (yes, I know, the Winter Solstice is darn soon). I stayed until about 19:40 and made it home by 20:20. I wish the drive every day was like it is on Sundays.

 

Today (Dec. 19) was a tough day for various reasons. However, a lack of common-sense, poor time allocation between patients and non-communication issues will inevitably lead to various disappointments. In particular, Laurie has been moved from a comfortable, (as much as you could get I guess), room with one other woman to a room with two other women. I couldn't get a satisfactory reason for this change from the nurse. So, I packed the meager belongings that we have for Laurie there in preparation for a move later in the day. After Laurie's lunch, I wrote a note to the nurse indicating that I would be back by 13:40 as I was going to the cafeteria in search of lunch. When I got back to the room at 13:35 or so, Laurie was gone. Good grief. The nurse could have told me that Laurie was being moved imminently and I would have stayed. So, I got pretty huffy and puffy when asking where Laurie was. The morning nurse did later apologize for this but I could not accept her explanations very well. I was pretty miffed then and continued to be when Laurie's new nurse seemed to spend an inordinate amount of time elsewhere. This nurse was supposed to have four patients. Three were in the room where Laurie was. So, I presume that she spent 80% of her time in another room with the other patient. My blood pressure reading would have been impressively high at this point.

 

Towards 19:00 and nurse shift change the nurse gave the lady beside Laurie a hot cup of tea and then she left. So, about two minutes later, this woman is screaming about 1 meter away from Laurie. Well, she dropped the tea cup on her chest and was getting scalded. Ummm, maybe the nurse should be enrolled in Common Sense 101 again. I got a hold of a nurse by going into the hallway and they took over. The nurse alarm for this patient was no where in reach. These events give an idea why I spend so much time at the hospital. Laurie has a big enough hill to climb without all of these types of daily obstacles popping up for her to resolve.  

 

I do not know if Laurie will be coming home for Christmas. I cannot see her remaining there much longer given that there are no medical interventions taking place. She has no IVs, no daily blood tests, no more than one or two BP and temperature readings a day and no heart monitoring. She is eating well and walking a little. Bed rest is part of the equation and she can certainly do this much better at home. At one point in time, it was mentioned that Laurie may go to the local hospital near our home to convalesce. I have not heard anything for a few days now on this and I can't imagine her being moved there at this point. For some reason, in the back of my mind, I feel that they will tell me tomorrow (Dec. 20) that Laurie is being discharged. A day's notice would help but I am prepared for this outcome.  Laurie is certainly not in the Christmas spirit but I will try and make the best of holiday for her whether she is in the hospital or at home. The presents that I have bought her (I always pick things up over the course of the year and squirrel them away) are in a packed-away box in the basement. I guess that I can always gift wrap a 500 ml tub of Ben and Jerry's ice cream.

 

We have received an impressive number of Christmas and get-well (again) cards. I have not opened any of these yet. I will wait for Laurie to be here and I know that she will enjoy this thoughtful and often overlooked or undervalued part of the holidays.  I do hope to have another update posted by this Friday to let you know how and where Laurie is. Did I mention that the nurses will be on a holiday schedule starting Friday......

 

Long and winding road....under some construction.

The long and winding road. Like all roads, Laurie's road to recovery is leading somewhere. After what feels like a four-day weekend at the hospital, I can report that Laurie is going uphill, albeit in first gear and but finding her way into second. An important element in her gradual improvement since Friday has been the presence of her sister, Lisa. Lisa arrived on Friday about noon and has sat with Laurie and I up until late this evening (Dec. 11). Laurie gave us a smile when Lisa arrived. So many brain activities had to happen for her to do this.  It is nice for both Laurie and I to have Lisa with us and we hope that she may be able to return to Ottawa soon.

 

Laurie has remained in the same single bed room in the NOA ward. I am very pleased with the level of care that Laurie received from both the day and night nurses on Saturday and Sunday (Dec. 11). If I ever find myself needing hospitalization and nursing then please send her weekend nurses my way. They were compassionate, understanding, professional and practical. They understood Laurie's needs and Lisa's and mine as well. The weekend doctor was also very helpful in many ways. Everyone involved in Laurie's care, including the orderlies, were excellent over the weekend. I sincerely hope that tomorrow will be a continuation of this.

 

On Saturday Laurie had another MRI scan. This involved transferring her to a gurney from her nice hospital bed and being taken down one floor in a small elevator. She is not comfortable in getting the MRI due to the length of time that it takes and the noise it creates. I sit just outside of the room and could use some ear protection myself. She does receive a headset that minimizes the bass noise. The scanning procedure takes about 45 minutes from the start of the bed transfer to the return to the NOA. After the scan was done, Laurie was wheeled down a hallway with varying light intensities and noises. She showed signs of becoming sick at one point and a friend of ours who happened to be there resourcefully found a little baby washing pan (think Christmas turkey) and Laurie used this. My heart breaks whenever something like this happens to her.

 

Laurie's swelling and facial colouration were greatly reduced, if you contrasted between Friday morning and Sunday night. This improvement has also allowed her to reopen her left eye and at times it is more open than her right. Her bandage was removed that covered her suture involving 35 aluminium staples. She is still tethered to numerous pieces of equipment including one or two IV drips, a heart monitor, a blood oxygen monitor, blood pressure equipment and a nasal feeding tube. The PICC (Peripherally Inserted Central Catheter) was removed on Saturday but she still has, intermittently, a urinary catheter. With all of these wires and hoses coming from her one would think that she was a character in a movie involving cyborgs. The multiple daily visits by the nurse included an assessment of her strength. Her arms, hands, legs and feet are slowly getting stronger. This is due in large part, I think, to the fact that she is receiving a highly nutritional beverage on an ongoing basis. As she was not able to physically chew and swallow, this method of feeding was started and with some early success. Her memory is slowly getting better. She does not speak very much but when she does it is done purposely. For instance, a "good morning" and a "good bye" were said today but with very little spoken in-between. Although her speech is very limited, it is cognitive speech and fully understandable.

 

She remains in her bed throughout the day. The weekend staff ensured that she was as comfortable as possible and were particularly interested in addressing any issues related to headaches. Laurie does give an indication when she is experiencing pain and this was responded to using codeine or Tylenol. I am pleased to say that these administrations are not that frequent and they appear to be effective.

 

Laurie will likely have a CT scan early in the coming week. I have not talked to the doctor about her Saturday MRI but will likely hear something on Dec. 12th or 13th. She continues to take medication for the reduction of the swelling in her head and for reducing the chance of having a seizure. These are drugs that she been taking at home but now they are given in higher dosages. She continues to wear the "squeezers" and is on a blood thinner too. Both of these measures are in place to reduce the chances of a blood clot occurring. So, as you have read, there are many things taking place at this point. Perhaps the most intrusive is the twice daily taking of blood samples. This is something that I have a great deal of difficulty with. Tonight, Laurie had three samples taken from each arm using needles. The nurse was excellent at finding the veins but it does create a lot of stress for Laurie. I understand that these samples will likely be obtained once per day beginning shortly. If Laurie has any sign of a fever then the blood is also subjected to culture testing.

 

The one big difference between Laurie's first post-operative time and this one is that she is much weaker. I attribute this to her having had thirty radiation sessions along with chemotherapy followed by a recent five day period of high chemotherapy treatment. These must have reduced her strength in multiple ways and her recovery is affected by this. Thus, as the surgeon said, Laurie needs more time to heal. The surgeon did see Laurie on both Dec. 10th and 11th. He asked her a few questions and seemed to be satisfied with Laurie's responses, whether verbally or physically. I am hoping that the therapists take it slowly with Laurie this coming week. I realize the need for her to begin to move about and talk but these must be approached carefully and respectfully.

 

I have received many emails recently asking how Laurie is doing. I hope that those who have written and those who are reading along about Laurie's Road to Recovery find the some comfort in this update. I know that I am feeling better as Laurie undoubtedly is about her progress. Minute by minute, hour by hour and day by day, I see just how much courage Laurie has in her.

 

A Brief Note From Lisa:   Mark had asked me to proofread this and said I could add something if I notice that it was missed.   (Hopefully that means he won't delete it after he sees it ! )    Spending the past 3 days at the hospital with Laurie has made me realize how amazingly patient and selfless Mark has been throughout this entire ordeal.   Day after day of sitting, waiting for a few minutes of awake time to exchange a smile, worrying, asking questions, making sure the level of care never falters and feeling Laurie's pain everytime blood is taken or a bandage is removed (the weekend nurse called it "a free wax job") has taken a toll on him as well.    

 

At one point Mark was leaning on the rail of the bed, holding Laurie's hand and he nodded off.   At that point Laurie opened her eyes and looked at me.  I pointed at Mark.  She looked over at him, looked back at me and smiled, then continued to watch him until he woke up and realized he had 'been caught napping".  That she was able to see the humour of the situation was a good indicator to me that she is on the right 'winding road', albeit slow with some construction along the way.   Thank you all for your thoughts and prayers.  

Better tomorrow.......and the day after that....

As anticipated, Laurie has undergone a second procedure, that is, another brain operation. This took place on Tuesday, December 6th at the Ottawa Civic Hospital. They certainly did not fool around once she was admitted and properly diagnosed. Her surgery took a couple of hours. If you read back through the blog to the beginning, you pretty much know what took place then and it is essentially the same now, with one significant difference.

Right now, Laurie is not very responsive. For the last two days she has eaten virtually nothing and spoken only a few words.  What words she very inaudibly said, were in response to her doctor or a nurse who spoke quite loudly.  Getting her to drink water is a challenge. She shows very limited strength in her right arm and leg. Her vital signs appear to be alright, although there are some fluctuations taking place in temperature and blood pressure. She is on pain relievers, IV drips and pills or intravenous drugs to combat the swelling in her brain. She has a PICC line inserted to help minimize the taking of blood samples with new needles and the injection of some drugs. Her face is extremely swollen and red as it was last July after surgery. Ice once again helps to reduce the puffiness and hopefully provide comfort.

I spoke with her surgeon tonight. He feels that the CT scan taken yesterday looks alright. I spent about five minutes this morning with another doctor looking at the scans and listening to him explain the situation. It helps to be informed but this does not reduce my apprehension. There is some swelling in the brain that they are working on reducing using drugs. I think that the surgeon saw how distraught I was tonight and said that "it takes time". I can not help comparing the present to Laurie's first battle with the tumour. She seemed to cope better right after her first surgery as I recall seeing some progress almost each day. I do not see the same now but I need to remain as patient and calm and optimistic as I can. This has not been at all easy for Laurie and I wonder just how much she may be aware of what is taking place around her.

There are no plans that I know of to move her from the Neurological Observation Area. She is to get an MRI soon and that is all that I can pass along at this point. She has had visits from both the physiological staff and the speech therapist but I kindly asked them to return another day.  My feeling is that these kinds of professional services may be a long way off still. I keep thinking that the doctor is right in that Laurie's improvement will just take more time. I have to believe in this.

I feel somewhat apologetic for such a brief summary but this is about I can write for now. Please believe along with me that Laurie will be better tomorrow and the day after that and the days and weeks to follow.

Positive energy, angels and prayer urgently needed

Laurie has taken a U-turn on the road to recovery. It is something that she, nor I expected. However, there were recently indications that she was not doing as well as hoped.

 

On the morning of December 4th we went to the local hospital since Laurie was unable to remember very much at all. Recently, we travelled to this same hospital but these visits were connected to her fever more than anything else. The issue of her failing memory was expressed though.  However, after about a three and one-half hour stint at the local hospital, we were told to go to the Ottawa Civic Hospital where they were expecting us.  Well, not so much as expecting us since they really did not know we were coming there. So, we waited there and after an excruciatingly long time in the large waiting room we went to the "Urgent Care" area where we waited another eon or two. So much for the naming convention. We saw a variety of nurses and doctors and administrative people who asked the same questions to which we gave the same answers. Eventually an intern neurological man sat down with us and started the important work.

 

Finally, someone felt that Laurie should be admitted. Top marks for good judgment.  Well, in my view I was not in a position to take her back home anyways. So, she went to the same area that she spent her first night in hospital back in July. I left late Saturday (Dec. 3) night with the feeling that we were beginning her journey all over again. She seems a little better than the previous time but still she is very ill and I am very concerned.

 

Today I arrived to find that she was moved to opposite side of the Observation Area. This is quite a busy ward and activities go far beyond simply observation. She was not permitted to eat or drink. She was hooked up to an IV and monitors - all as before. On Saturday she had two CT scans, one with the contrast and one without. Then today she had another MRI, with contrast. She is having blood samples taken every eight hours and her medication dosages are far higher than taken at home. She also gets these drugs intravenously. She is being checked every four hours for vital signs and cognitive things by the nurse. She looks so small in that big hospital bed and all of the instruments that are attached to different parts of her.

 

Late this morning (Dec. 4) Laurie was transferred to the Neurological Observation Area (NOA) which I know quite well. She is comfortably resting in a single room and has pretty much full-time nursing care. She slept the good part of the day but we did talk a little. I spoke with three doctors there who said that it is likely that surgery will be done soon - possibly on Monday (Dec. 5). The head surgeon on her first operation team back in July will be in Monday morning and a decision will be made as to her treatment plan. Apparently, a second surgery will be less invasive than the first and likely not take as much time. However, there is always risk here that these assumptions may not turn out as planned.

 

I do not understand how, having gone through all of the radiation sessions and her chemotherapy treatment, that the tumour can actually be larger in size. Both oncologists have never really addressed the recent symptoms even though I was reporting memory issues once again as recently as ten days ago. She has spent so many days in recovery and been through so much since July. I cry when I think of everything that she was encountered and dealt with, and we have returned to the beginning.

 

So, as of now I am at a loss. The hands of time have been turned back four months. It is not a bad dream. It is reality of the worst kind. I keep trying to remain as optimistic as I can but it is very difficult to think beyond what tomorrow may bring. I will provide updates when I can but this may prove difficult in more ways than one.  Please think of Laurie and send her your positive energy and prayers.