Please Do Not ...

This post will make much more sense after you read the following entry. But read this one first.

Know that your love, support, and prayers have meant far more to me than I can express in words. As such, I apologize for any hurt caused by what follows. It is not meant to be taken personally. It is not meant to "target" anyone in particular. It is merely an expression of what I need and do not need at this time.

As you will learn in the post that follows, this is becoming an extremely stressful time for me. What I say here is a feeble attempt to reduce at least some of that stress.

I am sorry if any of this comes across as rude. I am simply stating what I need and do not need at this time, and will try to add some explanation in the hope that y'all can "get it" a bit better.

Deep breath. Here we go:

Please DO NOT -

1) Please do not phone me. I have very little energy to talk about my situation other than to the few select people (e.g. family) who need be kept informed as things develop. Also, I do not wish to keep repeating the same information ad nauseum. Know that when I feel up to talking to you, I will call. In the meantime, I will endeavour to update this blog as much as possible.

2) Please do not project your fears on me in any conversations we do have. I do not need you to tell me that "this is awful" or "how terribly tragic". And please don't tell me to get a second opinion, or that this could lead to something else, or any other verbal wringing of hands. Should I be bald when next we meet, do not cry over my hair loss - it didn't bother me before and I doubt it will bother me should it happen again - or any other physical changes you may detect. I have my own concerns and fears to contend with. I have neither the time nor the energy to deal with yours.

3) PLEASE DO NOT TALK ABOUT ANY OF THIS WITH MY MOTHER!!! Should you talk to or see my mother, do not mention my condition. If she brings up the topic, try to change the direction of the conversation or be as vague as possible - "I haven't talked to J for sometime, but when we last spoke she was fine" will likely suffice. Mom is already worried enough about me. She also has her own health issues. I have always been upfront and honest with Mom regarding my situation. That will not change. However, it is best that she be given only essential information on a need-to-know basis - from me. She can't process much more than that.

4) Please do not suddenly start searching the Internet to find out more information about my situation. Much of what is posted is erroneous. Many of the sites are not credible. Much of the information on credible sites is outdated. While some of the case studies may pertain to others with similar conditions, each of us will have enough individual variations to make any comparison useless. My medical team is my go-to for information.

5) Please do not send me information about amazing/wonderful/break-through "cures". Cold hard fact is that should such a thing exist, it would already be in wide general use. Besides, I have no intention of spending the foreseeable future downing copious quantities of baking soda in water or pureed asparagus or whatever. Should the time come that proven science-based medicines are no longer an option, I may opt for something alternative. Or not. My medical team keeps me abreast of the most recent research regarding many non-traditional approaches as well as science-based medical advances, so I'll be in good shape to form a plan if/when the time comes.

6) Please do not suggest that what has befallen me isn't fair. I've had 50+ excellent years of a very blessed life. The only certainty in life is that none of us gets out alive. We've all gotta go sometime. I suspect that, statically, I have a far greater chance of being a traffic fatality.

7) Please do not play the "religion card" with me. Do not say things like "it's God's will" or "how can a loving God do such a thing?" or "if you would only accept 'the true faith' you will be surely saved". In my view, such rantings are an expression of the speaker's own religious hang-ups. Please keep yours to yourself. I have a very strong faith that has and continues to sustain me.

Guess that's it, at least for now.

Many thanks for your understanding.

Personally Plural

Animal group terminology:
apes = shrewdness
bears = sleuth
cats = clouder
deer = bevy
elk = gang
ferrets = business
goats = tribe
hippopotamuses = bloat
kangaroos = troop
lions = pride
moles = labour
otters = romp
porcupines = prickle
rhinoceroses = crash
sheep = drove
tigers = streak
whales = pod

Me? Well, most who know me will say I'm pretty unique so I guess there is really only one of me. Feel free to thank God for small mercies.

However, there is a misspelling in the title of this post. It really should be "pleural" not "plural".

Just spoke with the study nurse (her weekly check-in). I let her know that I'm feeling pretty good right now, but am somewhat annoyed by the persistent cough. That's when she said she remembered seeing mention of a pleural effusion on my last CT scan report. Confess I didn't realize I had such a thing or at least don't remember hearing of it, but then I've been kinda overwhelmed by info of late.

Looked up a definition of pleural effusion and this is what I found:
Your body produces pleural fluid in small amounts to lubricate the surfaces of the pleura, the thin tissue that lines the chest cavity and surrounds the lungs. A pleural effusion is an abnormal, excessive collection of this fluid.

While chest pain hasn't been an issue thus far, shortness of breath certainly is. The matter has been much more noticeable in the last month. Suspect last month's cold thing didn't help matters. No doubt the "crackling" the GP heard in my chest (when I went to see him re the cold thing) was due to the fluid build-up, even though no pneumonia was present. Although it is unlikely the fluid will ever disappear, given my general state of health, it is hoped the chemo will stabilize it and slow its spread. Guess this is my "new normal". Hey, things could be much worse, so I'll take it for what it is.

Back for More

Fall isn't shaping up to be the season I envisioned. In addition to the early return to chemo, there have been all those side effects to contend with, and then the cold thing, and then the eye thing ... Have been in bed more than I've been out. Very disappointed that I not only had to forego the Maiwa symposium lectures (at least those held in Sept) but also had to give up my space in the Japanese dye workshop. A huge debt of thanks to Lynda for delivering some of the much-sought-after dye so I can at least play with it a bit when I feel better.

Off to Vancouver again tomorrow for the start of Cycle 3. I'm still coughing up a storm, but at least my sinuses are better. Still not sure if it's allergies, a cold, chemo side effect, or something other. Time will tell, no doubt. And since this is the cycle when the much-talked-about diarrhea is supposed to take hold, I'll likely be sticking close to home for the next while. Good thing I love my house!

The eye issue seems to be improving albeit slowly. Very few floaters left and the flashes are long gone. Only irritation remaining is the cobweb effect. Apparently that will also settle in time, but may take up to six months or a year to be fully relieved. In the meantime, I will monitor for any changes that may signal a worsening of the situation, although my optomotrist and the current literature indicates that will only happen in rare cases. Besides, I have enough other things to worry about that are far more pressing at the moment - like dealing with side effects from the upcoming chemo cycle.

Not that the last few weeks have been entirely bad news. Managed to drag myself out of bed long enough to host a lunch to mark Momzy's 92nd birthday. It was great fun, especially with a surprise guest coming all the way from Florida to help her celebrate!

Okay, so I spent the rest of the day in bed recovering from the festivities. It was worth it!

Fingers crossed that Cycle 3 is another reason to celebrate.

Eye for Drama

I never thought myself a drama queen. But I might just be a drama magnet.

Seriously. In the last week I have had some interesting chemo side effects. And then I got the cold/sinus infection/cough thing. A furry intruder made himself at home in my home. And late last night something new was added to the growing list of happenings in my life.

I cannot remember what initiated the event (a cough? a sneeze?), but around 6pm I noticed that all was not as it should be with my right eye. There was a very mild sensation of something "letting go", but no pain. At the same time, there was a series of "flashes" and a marked increase in the number of floaters and other things moving through my field of vision. At first I thought it must have something to do with the NKTR-102, but when the floaters appeared to multiply overnight, I knew something was seriously amiss.

Saint Penny drove me to see my eye doctor this am. I was afraid to drive myself in case the vision thing got worse. Was terribly afraid I had a detached retina.

As luck would have it, my drama wasn't quite that dramatic. However, there is a definite problem with my right eye. Have something called a posterior vitreous detachment. Never heard of such a thing before, and was surprised to learn it is a very common condition often associated with aging. Here's how the RNIB (Royal National Institute of Blind People) describes the condition:

http://www.rnib.org.uk/eyehealth/eyeconditions/eyeconditionsoz/Pages/posterior_vitreous_detachment.aspx

At least it's something I can learn to live with, although the cobweb effect is rather distracting at times.

In other news:


Sad to say the mouse is no more. It has ceased to be. It is an X-Mus. Two others found their way to traps in my crawl space. Good news: where there are mice, there are no rats. Better news: the pest dude found their point of entry and will close it off once it is certain all the meeses are out of the house. And the deer mouse was such a dear cute thing, at least its face was. Now that is no longer scampering about, I can get some much-needed sleep.

Mus fuss and other annoyances

The problems mentioned in my previous two posts continue to plague me. Yes, things seemed improved on Saturday morning when my last posting was filed, but by evening they took a nasty turn.

By bedtime I was vomiting, and the fever had climbed to 100.9F. My sinuses had become completely blocked. It was impossible to sniff or blow my nose. Each time I coughed, I'd spit out yellow/green mucus, at times almost chocking on the stuff as it caught in the back of my throat (lovely image that - no wonder I live alone). I had no appetite but forced down water, juice, and some soup over the course of the day despite nasty noises stemming from my GI-tract. The Total Tummy Timpani was seriously upstaged by what sounded like a set of ancient and highly maltreated bagpipes taking up position in my upper right lung. The wheezing and droning was almost deafening. Could not find a comfortable position in either my bed or on the sofa. I was exhausted, but sleep was constantly interrupted by the endless coughing.

Now, gentle reader, I suspect you are asking yourself something along the line of "Why doesn't she go to the hospital?" Well, a couple of reasons. First, the on-call doctor at the Cancer Agency said they wouldn't be worried unless my fever hit around the 105F mark (I was only going to wait until it broached 103F). Didn't feel up to driving myself to St Mary's emergency, and figured the ER staff had better things to do that administer soothing words to someone with a nasty cold. Phoning anyone was neigh on impossible as I couldn't stop coughing and spitting long enough to ask for help. Besides, it was after midnight. What I really wanted was to just fall asleep, and felt if I did so all would be better in the morning.

At some point sleep did find me. Temperature dropped to a friendlier 99.0F. But the coughing and sinuses issues continued. Sneezed so hard at one point, a nose bleed added some extra colour to the situation. By now I was convinced I had pneumonia, but was not up for sitting in the ER for three hours (estimated time given this was now Sunday and all medical clinics would be closed so the ER would be more than a bit busy). Fortunately sleep had become easier, so resolved to call my GP in the morning.

On Monday, I went to see Mom's GP. My own GP was booked for the day, and since Mom's doctor knows a good deal about my situation, too, he presented a logical stand-in. Listening to the "crackle" in my chest caused him to agree with my pneumonia diagnosis. To confirm, he ordered a chest x-ray and blood word which I received immediately upon arrival at St Mary's. The doctor called later in the day to say that the x-ray did not show any pneumonia, my blood work was fine, and it appeared I had nothing more than a very nasty cold. He prescribed an antibiotic, and told me to use my inhaler whenever I was caught short of breath. I thanked him for his kind assistance, and promptly fell back to sleep.

Awoke Tuesday to find my sinuses much improved but the cough was hanging on. No fever, no appetite. I slept most of the day.

When the Cancer Agency study nurse made her weekly phone call on Wednesday (yesterday), she asked what antibiotic I was on. I said I wasn't on an antibiotic. For some reason, likely the fact that he called when I was napping, I misunderstood what the doctor had said. I thought he said he would only prescribe the antibiotic if the cough got worse and, since I didn't feel matters had deteriorated any further, I hadn't bothered to call about the medication. Within half an hour, the good folks at Pharmasave delivered the antibiotic Avelox to my front door (free of charge). I took my first dose immediately upon receipt, read a book for about an hour, and then resumed napping.  At last, all would be right in the world.Except that around 10pm a tiny intruder made it's presence known.

Over the last couple of nights I thought I heard strange noises about the house. A spoon fell off the kitchen counter. A pile of mending tumbled to the laundry room floor. Someone was rummaging in the candy dish on a side table in the living room. Last night I traced a scratching sound to my hall closet. When I opened the door, two very cute beady eyes met mine.

Okay, so I've toyed with the idea of getting a cuddly pet (Murphy definitely lacks in the warmth department) but a field mouse running amok isn't quite what I had in mind. For the better part of five hours, I chased the beastie. After a time, it turned into something of a battle of wits. It was fascinating to see how tiny a space the mouse could squeeze in or out of. Watching it think over how to overcome the various traps I set up was also an eye-opening. Trust me when I say these are highly intelligent creatures. Finally, I couldn't take any more. I called a truce and fell onto the sofa. This morning I call in reinforcements. A pest control dude should be arriving at more any time now. Good thing as I'm not sure how much more excitement this ol' body can take.

Missed my calling

Well my powers of self-diagnosis appear to be as sharp as ever. Seems I have chemo side effects AND a nasty cold AND seasonal allergies. No room left in my stuffed head for any semblance of bliss. Felt crappy enough last night that I called the on-call doctor at the Cancer Agency - was a tad concerned when fever set in. Fortunately, the fever wasn't high so nobody is overly alarmed. Will continue to lay low for the time being. No energy or inclination to do otherwise.

No Yellow Jersey - Early Tales of Cycle Two

Yesterday was the first day of the second cycle on NKTR-102. Thus far the side effects are not nearly as dramatic as they were following the first dose. However, these are early days and I've been warned side effects of the drug are cumulative. No headache this go 'round, but did have slightly blurred vision - which continues this morning. Also had a brief wave of nausea shortly after my buddy IV made her exit. Thank goodness no vomiting resulted. Have discovered a symphony has taken up residence in my tummy, at least the percussion section. Some minor hints of the diarrhea to come, but again no serious drama yet. My strongest complaint pertains to my sinuses. Either I've got  a nasty attack of fall allergies, or a hideous cold has started to set in. In any case, my sinuses ache, eyes and soft palate itch, cough is more frequent, and I'm sneezing to beat the band (if not that Total Tummy Timpani). Am resigned to spend the next few days buried in blankets with cups of steaming liquid at the ready.