Unauthorized update on Cathy

Cathy Brown again - I separated this post from the last one since this one is serious. First of all - its the middle of the night and I can't sleep. I wanted to update you all and suggest something we could try, but of course, can't ask Cathy's permission to post this.

Cathy is in a low spot right now. She is having abdominal pain and not sleeping. I'd like to go into a bit more detail here, but I will await her permission to do so first.

Suffice to say I have two issues to address here.

First - I know we are praying and keeping Cathy in our thoughts. I am suggesting anyone who'd like to also try directing our prayers and thoughts in a more specific manner - aiming them specifically at lessening Cathy's pain so she can sleep better.

For those interested, here is something to try. In a quiet place where you will be free from distractions, get comfortable. Lying down or sitting in a really supportive chair is a good idea. Close your eyes and take a few really deep and relaxing breaths, trying to let your body calm itself down and free your mind from any distracting thoughts or what I like to think of as the 'committee' - the part of our brain that is telling us we should clean the house or do some yard work or yada, yada, yada.

When you feel relaxed and centered, picture Cathy lying comfortably in her bed The more realistic and the more details you can supply, the easier this will be. For example, I picture Stitch curled up next to her. Envision her fully relaxed and emotionally at peace. Think of a healing light - try to picture it in whatever colour you find pleasing that reminds you of health - mine is a light royal blue that is luminescent with sparkles. Imagine it originating in her liver and see it slowly growing until it envelops her entire body. In your body - feel how it is pervading her body with warmth and relaxation. See this light washing away the pain she is having - perhaps like waves eradicating lines on the sand - with each pulsation of the light more and more pain is erased. When you have fully removed her pain, see her relaxing so deeply she melts into her bed, as if she no longer has bones and is basically a pile of warm goo. Now concentrate on seeing her sleep deeply and restoratively through the night. Awakening full of peace and energy, ready to face her day.

Secondly and on a personal note - I find myself awake often during the night - my mind occupied with thoughts of Cathy. I struggle with my own emotions which are up and down like a roller coaster. I am having a lot of pain in my heart (not just emotionally but also physically in my chest area where my heart is) - which I know is my nervous system trying to deal with my emotional energy. During the day I often find myself at work, operating in a fog, still feeling like I've been hit by a truck. I find myself standing in the exact place I was when Cathy told me and am again struck with such a deep guttural pain I am surprised to find I can still stand up and don't just crumple in a pile of goo (which, to be honest is what I'd truly like to do).I am wondering if any of you are experiencing this as well or is it just me going crazy?

Friends of Cathy

Hi all, this is Cathy Brown. Thank you all for the kind words about my last post. I am very proud to be a part of such a wonderful group that cares so deeply for Cathy. She is a special person and while she is blessed to have us, we are truly blessed to have her in our lives.

This brings up a thought. We need a name to call ourselves - perhaps we could even get T shirts made. I like "Cathy's Coven" because it sounds cool. I don't like the witch connotation though - however many days I am a word that sounds like witch but starts with a 'b'. I find in light of all that is going on and the awakening to what is truly important in life, I am so much less tolerant of all the petty, trivial matters that seem to pop up in life. Especially at work where I want to flick some people upside the head and tell them to grow up and get a grip on what's really important. They just don't realize that such little matters are so unimportant - I guess they are lucky they aren't dealing with what Cathy and the rest of us are- only they don't realize how lucky they are.

Anyway - any suggestions for a name for all of us wonderful (and I love the fact that, judging by the comments) crazily humorous type people?

Barfing in a Bucket

Good morning from Cathy Brown. Health care workers often resort to gallows humor - it is one coping mechanism that lets us continue to function when faced with so much pain and suffering on a daily basis. It is what I have to resort to right now, because if I can't laugh about some of this I will be in a puddle of tears.

When I told a co-worker Cathy and I were going to Chemotherapy school she asked if they were going to teach us how to 'barf in a wastebasket'. Even though I have been a nurse for a measly eighteen years compared to Cathy's 35, I readily admit I don't know anything about chemo. Like most of the population all I 'know' is that you vomit a lot and you'll lose your hair. Guess what? These aren't always true.

So here's a crash course on Chemo 101, the blogger's version.

Chemo affects rapidly growing cells in the body, so besides the cancer it also affects bone marrow, the lining of the mouth and digestive system, hair, skin and the reproductive organs.

From the top then:
There are three types of cells made by the bone marrow affected by chemo:

White Blood cells (WBCs)
- these cells fight infections in the body
- they will be at their lowest levels (and least effective) from day 7 to day 14 after the chemo treatment
- Cathy has to be vigilant checking her temperature and watching for signs of infection. An out of control infection can kill her
- For the rest of us this means we have to be very careful when we visit. Frequent, thorough hand washing is the most important thing we can do to keep her safe. We have to monitor our own health and postpone our visits if we are sick. We especially have to be vigilant during the seven to fourteen day period after a treatment

Red Blood Cells (RBCs)
- these cells carry oxygen
- since the chemo will destroy some of these cells, Cathy will have less oxygen circulating in her blood and she may be short of breath and tired.
- some people have well defined, short periods of fatigue, while others suffer from it for the entire cycle
- there is no way to predict how it will affect Cathy

Platelets
- these cells are responsible for blood clotting
- low platelet levels mean Cathy might bruise easily
- she might bleed a lot, even from a minor cut
- nose bleeds can be very serious

Lining of the mouth and digestive system

Nausea and Vomitting (N&V)
While my stereotypical picture of barfing in the bucket won't necessarily come true, it still might happen to Cathy as the drugs she will be on do tend to cause N&V
- N&V can be immediate or delayed
- the doctor will give her a prescription for drugs to control this
- she will need to take these medications regularly for the first three days and then as needed after that

Mouth Problems
- many people on chemo get sores in their mouth and throat as well as bleeding gums
- the Cross (Cancer Institute - where Cathy will get her chemo) recommends rinsing with baking soda in water or club soda. Cathy might need to do this after eating and every two to four hours
- many people on chemo find their sense of taste is affected, so besides their mouth hurting when they eat, stuff may taste funny (only if this happens to Cathy will I send some of my cooking over!)

Constipation or Diarrhea
- constipation is more common with the drugs Cathy will be on, but diarrhea is still possible

Hair Loss
- not everyone loses their hair, some have no change, some thin a little, and some lose everything
- If it is going to happen, the most common time is about 15 days after the first treatment
- hair often grows back and may be a different colour or texture
- the doctor told Cathy she will probably lose her hair
- I'm hoping Cathy becomes a curly headed blonde when her hair grows back

Skin
- may be sensitive to the sun for one year after chemo
- this means Cathy will need to be vigilant about covering up and wearing sunscreen next summer

Reproductive organs
- not really an issue for Cathy

Others
- muscle weakness, numbness in the toes and finers and ringing in the ears are all possibilities
- Cathy has already been trying this one out at work - whenever our boss starts talking Cathy tries the "I can't hear you - my ears are ringing" thing

Here's a quick recap of all the above:
Cathy may or may not be tired, barfing, bald, sore mouthed with sun burned bruises, unable to hear while she flips up her middle finger to 'get rid of the numbness'. Irritability isn't on the list - I can't imagine why not.

I hope my primer has given you a bit of information on chemo. If any of my attempts at humor have offended you, please forgive me. As most of us are finding, I struggle daily just to understand how all this could be happening to Cathy. Some days I am grown up and functioning and other days I am crying like a little child who doesn't understand what is going on and just wishes someone could promise me everything will be all right.

Hi, everybody, this is Cathy. Oh, my God, I never intended for anyone to feel like they couldn't contact me. I just might not answer the phone. Leave a message, and although it may take me a while, I will contact you back. Feel free to email me anytime. I don't look at me email every day anymore, but I will respond eventually. It is just sometimes hard to talk to lots of people all on the same day.

Hello, all. This is Cathy. I can't tell you how overwhelmed I am by all of the love sent my way. Many days I am unable to talk to anyone on the phone. In the early days, I was spending upwards of 6 hour per day on phone calls, and receiving messages on voice mail at the same time. It was really hard for me to dwell for so long on me and my problems. My family finally took over, and I no longer answer the phone. They monitor phone calls, take messages, or let voice mail answer if they can't handle it anymore. I hop nobody is offended by this, but it is so emotionally draining, we just can't deal somedays.
While in hospital, Dr Bailey gave me morphine every night to make sure I got a pain-free full night's sleep. Although I appreciated this, I also knew I would not be taking pain medication when I got home. I've learned what causes my pain and what I can do about it. Occasionally, I've been forced to take Tylenol extra strength, but I try to avoid it.
Yesterday, I returned to the Cross Cancer to meet with the doctor who will be in charge of my care. His name is Dr Sayer, and he's a very odd duck, but very smart, so I can deal with everything else. He believes I have choangiocarcinoma, which is cancer of the bile ducts of the liver, meaning we can stop looking for the primary outside of the liver. Apparently I have classic symptoms if you know what they are. They cause problems with clots, and they cause higher calcium and Parathyroid hormone levels, all of which I have. He says that I have been accidentally diagnosed very early, so now he's uncertain how to treat me. The outcome is still the same. It is not curable. Usually by the time a person has been diagnosed, they have football sized tumors. At the moment I have golf balls. If he treats me too early, he could actually do more harm by depriving me of life-lengthening treatment later on. He's going to wait and do a CT Scan on Sept 29, then I'll see him again on Oct 8th. He may start me on PRUNK chemo then, and wait to treat me with cholangiocarcinoma chemo later. I go next Tuesday for chemotherapy classes. I have been told I will lose my hair with the first round.
Dr Sayer has encouraged me to get active, and encouraged me to go back to work, even if I can't do a whole day. He told me that I can set up my Wii Fit that I bought just before all of the chaos. So this weekend, I intend to get my husband to set it up for me.
In the meantime, positive thoughts, everybody!! It ain't over until it's over, and I'm not giving up yet!!

Hi this is Sandy. I am just giving you all an update on our visit with Cathy on Saturday Sept 12/09. Wanda & I drove up to Edmonton to visit and met up with our cousin Lori and stayed probably too long at Cathys but had a great visit. We shared some laughs, we shared some tears, but through it all Cathy is holding up very well. Cathy is going to try to return to work on Monday Sept 14/09 and see how it goes. She probably wont work whole days but will see how it goes. She so far has been able to keep herself off all pain medication. Although she is taking shots to help disolve the blood clots in her lungs, which is a symptom of the cancer. She explained to us that the tumors in her liver thickened her blood and therefore has caused blood clots in her lungs. This has been the reason she has had shortness of breath. When we were there on Saturday Cathy is no longer using the oxygen but still has some labored breathing. This will get better as she gets the blood clots dissolved. They did a full body scan called a pets scan on Friday but still did not find the primary source of the cancer. Cathy is going to see the doctor on Monday and get the full results but at this point her chemo will be administered as a PRUNKS (primary unknown) patient. I would like to thank all the family who has sent thoughts and prayers to us and Cathy it helps alot. I knew we had a great family but it is times like this you all really shine. Between all of us we will keep you posted the best we can I sure hope you enjoy the blog. Love you all Sandy... ps we did not know how to set the blog so it doesnt say posted by Cathy so we will just say who is writing. It was the blind leading the blind setting it up.

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