Thrush

Of course, the attached picture refers to the avian variety, not the physiological kind that appears to be the culprit in the continuing throat discomfort that I am experiencing. I won't post a picture of what the infection actually looks like, preferring the more musical reference instead. But it was apparent enough that my oncologist at Group Health didn't even do a culture to confirm, once he looked into my throat.

According to wikipedia, thrush's scientific term is candidiasis and it is a fungal or yeast infection. The last time I remember coming into contact with thrush was when the kids were babies. It was a condition that developed when they were nursing. Luckily they don't remember that time at all.

So I am on an anti-fungal, nystatin, that I get to swirl around and hold in my mouth every 6 hours. Apparently this is a side effect of the steroids that I was taking early on in the chemo cycle. We will hope that the cure is quick.

A lump in my throat

Over the past few days my throat has become a bit more inflamed and swollen. Not sure why, perhaps it's my stupendous weight loss program, but I am going in to have the oncologist check it out tomorrow. It constantly feels like I have a small platform resting on my esophagus and swallowing is a bit more difficult. I just don't want it get worse.

Monday was the worst day so far in this journey. You know it's bad when you can't finish brushing your teeth for fear of an eruption. I know now what to expect for the next round of chemo and maybe will request to be knocked unconscious for the first day without steroids (small, wan grin). So maybe the trolls didn't win but they scored deeply.

Down the Rabbit hole

Well it's been 4 days since the administration of the chemotherapy and this stuff is not for sissies.

I've had some good times this past weekend with friends who flew in to visit me from Denver, Kentucky, and even my friend from Klickitat County, but it all comes with a price tag. I had dinner with all of them at the home of another couple, both Saturday and Sunday and it was great fun, but very very draining. Still, I appreciated the love and effort they made to come see me. We're vowed to meet again in two years when things will be better and I can join in the touristy fun like seeing the Troll in Fremont as well as the statue of Stalin. And a ferry ride and going into the mountains to see the colors. Lots of things left to do.

As it is, I have a troll of my own in my gut. It keeps me constantly aware of my stomach and how I am feeling, which is not very well. I have a constant metallic taste in my mouth, the aftereffect of the platinum in the cisplatin chemotherapy and things just do not taste the same. Last night I woke up at 2:30 and could not return to sleep because, in part of the nausea, and finally took an anti nausea drug, which enabled me to sleep fitfully for an hour or two at a time. One of the side effects of the anti nausea drug, however, is constipation. So I am trading one problem for another. I've never used it before, but I have a large, industrial sized bottle of milk of magnesia on the side of my sink in the bathroom. It may be time to take out a troll or two...

Wherein Truffle earns her moniker

Okay, so today was a bit draggy. In fact, I even went back and took a nap in the afternoon. The anti nausea oral meds worked up until about 11, when I started feeling queasy and popped another one. However, they've only given me enough meds to last me through tomorrow and that is making me nervous particularly because I can aspirate any vomitus so easily given the permanent open position of my vocal cords.

I emailed my oncologist's office late in the morning, but have not received a response. I called the consult nurse late in the afternoon and they were able to refill one of the Rxs but not the other one. So I will have to find a friend to go to GH Northgate tomorrow to pick it up for me.

In the meantime, my youngest dog was making a nuisance of herself. Somehow a box of Mrs. See's chocolates had been left on the coffee table in the living room, unknown to me. When I got up from my nap, I kept hearing this nose snuffling and ruffling of papers coming from there. Further investigation showed that my little 8.2 lb puppy, Truffle, had knocked the box down from the coffee table, manage to chew the lid off and either had daintily eaten several...truffles....or had licked a fair number of them. A quick call to my vets, NE Veterinary, which is just around the corner from where I live, thank goodness, got me in to an emergency appointment at around 4pm. We showed up with the box as Exhibit A and Dr. R and his vet tech took a look at puppy and box and decided that she Should just be kept under close observation and not made to vomit. Which, I can tell you eased my insides considerably. Because I am afraid of the cascade effect.....

So I perambulated home with Truffle in tow, stopping to play with Alice the next door golden retriever, and to greet another attorney, also named L, from work, who was bringing me more gifts and work related items so I can continue to work from home. Good to get out of the house during a period of relative warmth even though it was between rain showers. But this is Seattle in the fall, and we take what we get.

End of the First Movement

The chemotherapy went without a hitch. The 3 anti nausea drugs they used worked, although I am becoming slightly queasy right now, perhaps a function of the time.

The use of the chest port certainly made things easier. The needle that they used has a barb on it, like a fishing hook. Luckily my skin was slightly anesthetized before it went in and afterward, felt nothing. Although there is an ache in that area right now. They began with some anti anxiety meds followed by anti emetics and a large bag of IV fluids before they even began with the chemotherapy agents. The pemetrexed came first. Then more IV fluids followed by the cisplatin. And more IV fluids. The nurse, V, was from New Zealand and we had several delightful conversations about her country, as I had been planning to hike the Milford Track or Trek this coming January with my friend T from Honolulu, until the cancer intervened. V will be taking of for quite a spell of time in December and part will be a visit to New Zealand. I am envious. But it's merely a postponement.

My friend, A, drove me to Group Health, and my friend, D, joined us about a half hour later in the infustion ward. And they both stayed with me the entire time, ~ 6 hours, and kept me wonderfully entertained. My daughter showed up after she had completed her all-night rotation at UW hospital. She was present for the visit by the oncologist, then left to attend a meeting outside the hospital, but later came over for dinner, which was cheerfully and graciously provided by L, an attorney in my office.

I am deeply tired, but also don't want to sleep because it feels really good to be done with a procedure I've been dreading for quite a while. It has been a very intense, but quiet day and I am glad to have it behind me. But it is just a start.

Prelude

Well it's the night before chemo is to start--at about 9 or 9:30 tomorrow morning and run for 6-8 hours--chemo infusions will take about 3 and the rest will be filled with IV fluids to protect the kidneys, as they are at risk of damage from the cisplatin. The other common side effects include:

* hair loss
* feeling tired or weak
* nausea and vomiting (this is the big one)
* hearing damage in the higher ranges

Less common side effects include:

* low blood cell counts starting 2-4 weeks after your infusion (the nurse navigator said it would be more like a downward spiral for ten days but more on that later)
* numbness, tingling, and reduced feeling in fingers and toes
* sweating, difficulty breathing and rapid heartbeat (which are very rare)

The other chemotherapeutic agent, pemetrexed, also shares some of these side effects but also can cause:

* red or painful rash on the face and chest
* sores in the mouth, throat or lip
* chest pain

That's quite a concantenation of side effects, and the cure is not guaranteed, in fact it's less than 50%. Nothing like bringing out the risk taker in me!

According to Ms. F, my nurse navigator at Group Health, who met with me today after

a) my scheduled appointment with the Speech Language Pathologist for my swallowing and speech difficulties (where I learned a lot), and

b) an unscheduled visit to xray for a chest exam and quick meet with my oncologist (because I had difficulty breathing while sleeping Monday night--chest xray showed no pneumonia and oxygenation of the blood continues to be good);

the path that my treatment will take is that once I have the chemo, my blood counts (white cells, red cells and platelets) will fall for ten days after the chemo. For the first few days, I may not notice this because I will be taking the dexamethasone for 2 days following. But eventually, I will hit bottom 10 days from the chemo, then the blood levels will begin climbing back up for the next 10 days, reaching normal levels. A blood test will be done the day before the next chemotherapy treatment to confirm this, then chemo will be administered a second, and then a third time after, again a 20 day wait. My nurse navigator did not pull any punches: she expects this to be a brutal treatment regimen. And I have to learn to say "No" to people, to put myself first in this and not to try to take care of others. I have a bottle of hand wipe by the front door for all visitors to use upon entering and one in the kitchen and my car and purse. I am hoping that no one who has as much as a sniffle will come by because they can't visit during this time.

My nurse navigator also said to be careful about flowers. They cause more problems when I am immuno-compromised than they are worth. And gardeining, a real love but for which I have small talent, is out for the most part--can't get dirt under my fingernails unless I double glove and take it very easy. So funny cards and emails are the best therapy for me, right now. Humor can heal, I've believed for a long time.

The other news from the transvaginal ultrasound was disquieting but not to focus on right now. I have two, not one, ovarian cysts. The first cyst is on the right ovary and is a .9cm cyst and then there is a 9.1 cm cyst with "minimal debris." There is also a 1.4 anterior body fibroid. My friend, L, the gyn surgeon wrote to me tonight that they should be removed after the chemotherapy treatment is ended. Because neither the blood test nor the PET scan showed that they were cancerous, we will just assume they aren't for now. Fine. As my friend, D, who very kindly chauffeured me to all my appointments today, and asked very good questions, when she was not out in the waiting room having telephone scheduling conferences with judges and the other side said: "You get to be a professional patient, now!" I will give them a run for their money, as always.

On to the meeting with the speech therapist, which was actually the most interesting part of my day because I learned so much. Hence the picture at the beginning of this post. And I hope I am remembering all of this correctly, courtesy of Ms. K.

Our larnyx is a tube located in the front of our neck, while the esophagus is located in the back of our neck. When not in operation, our esophagus is closed up quite tightly. It's only when we swallow that it opens up to take food. But these two different tubes, one leading to the lungs, the other the stomach, have unique arrangement in humans, the only arrangement that is seen in mammals where the tubes cross, which can lead to problems, like those that I have.

When you chew food and.swallow it, your epiglottis serves as the first lid, closing off the larnyx so the food is not aspirated, or swallowed into the lungs. The vocal cords serve as the second barrier to this. Think of the vocal cords as a "V" in shape, with the narrow part of the "V" in the front part of your neck, and the open part of the "V" in the back, next to the esophagus. When the vocal cords can't close, like mine, there is an opening in the back where the "V" is open, and sometimes food and water can be aspirated when the epiglottis, the first door, somehow fails to do close and thus, do its job.

So I have to take precautions. I cannot eat things like steak and pork chops anymore or sharp foods like (damn) chips and nuts and popcorn and uncooked vegetables. Etc. etc. etc. But I can soak croutons in soup, and perhaps even chips in dip might make it. Yay!! But no cookies or cake. Although cheesecake is still good. Phew. And I have to remember to turn my head when I swallow to help artificially close off entry to the larynx from the mouth. Because breathing is the most important function that the body does, that comes first. And, given our human physiology, sometimes that can cause problems. End of lesson for tonight.

Just one personal observation here. When I was very, very young my family took a trip to Coldwater Lake in Michigan and stayed with the Reeves family who had a cottage there. I remember being on the wooden float out in a deeper part of the lake, having been helped there by my father. It was wonderful to be with my dad, who as a pediatrician in a small town, I did not see very much. He wanted to teach me to dive from the wooden float. And I froze up. Perhaps it was fear of failure in front of someone I idolized, but I was also afraid of not diving and instead smacking into the water and the pain it would cause me. What I remember is having an total meltdown tantrum on the float in front my father and the other family as I absolutely REFUSED to even attempt to dive in the water. Fear of the unknown and fear of pain has been, at times, almost paralyzing to me. It's the dread the freezes me up. I hope I can overcome that dread tomorrow and acquit myself with integrity. It is one of the guiding principles of Reiki as told to me by my friend S, who gave me a third Reiki treatment this evening in preparation for the morning. A profound and moving session.

I owe many thanks to many people, from my online women attorney friends; to my friends at daily kos who commissioned a healing quilt for me; to my friends at work who are bringing me dinners; to my friends at church who will be doing dog walking and other chores for me; as needed, in the near future, to S, my Reiki practitioner and friend; to my friends A and D who have been my eager taxi drivers and participants in my meetings; to my mom, my sister B, and my daughter, S, who have been there every step of the way; to my friends and ob/gyns Drs. D and M who have shared meals, and their fonts of caring and perceptive advice with me; to my college friends who have been there for me in so many ways, particularly J and F who I have called on for their medical expertise and they have responded unstintingly; to my childhood friend, J, who is now a dentist in Cleveland; to T in Honolulu; and to all who have provided blankets, knit hats and shawls, and sent presents, cards or emails, or offered up prayers. If I am not throwing a tantrum tomorrow or breaking down, it will be in no small part due to all of your kindnesses along this very long way.

Thank you, all of you.

More adventures with Sound

Tonight is potpurri--make of it what you will.


Sunday I went with a group of friends from church to see Joseph and the Amazing Technicolor Dreamcoat at the Fifth Avenue Theatre in downtown Seattle. There's a week left in its run, and I can recommend it highly for the entertainment value. My church choir had done our own very unique version of this Andrew Lloyd Webber musical two springs ago and we had purchased tickets this past summer to see how the pros do it. The Fifth Avenue version stars some fellow who was a finalist on American Idol and wears his hair a la Orlando Bloom in Lord of the Rings but that isn't necessarily a mark against him. Final verdict from all the attendees was two thumbs up, although we thought our own Potiphar and Pharoah/Elvis were just as good as the singers on stage.

This is the only youtube I can find of the current run, but it's indicative of the energy the entire cast brings to the production. Joseph at the Fifth Avenue Theatre

Then today it was up early and off to Group Health in Bellevue for a transvaginal ultrasound (another adventure with sound just to state the obvious). I'm going to give a "Guy warning" here so that if you are a guy and find talking or reading about this stuff distasteful, stop right here and just read the one word Executive Summary:

ICK!!!

The technician setting up the appointment had advised me to drink 32 ounces of water an hour prior to the ultrasound so my bladder would be full. I did as instructed and arrived at 8:20 for an 8:30 appointment, shall we say, primed and ready to go [this despite a pouring rain and bumper to bumper commute across the 520 bridge]. 8:30 arrived, and no go. Five minutes passed, ten minutes passed. I was getting very, very explosive. Finally at 8:45, I uncrossed my legs, stood mainly erect and made it to the check-in desk, where I enquired as to the delay. Now my voice is a chirrup these days, therefore, I lack the tone necessary to convey a real sense of urgency, so my words have to do it for me. What I recall saying is something to the effect that if they were not quick about getting me into the ultrasound room stat, all that careful preparation was about to go to waste. Immediately after I returned and gingerly lowered my body into my seat, the technician was out calling my name.

The first part of the procedure was a typical ultrasound, similar to the ones I had during my last two pregnancies, where ointment was spread over my abdomen and a hand held device was rubbed on top of my skin which, using sound waves, created a grainy, black and white reflection of the organs below my stomach. Once that was completed, I was allowed to dress and go to the bathroom (whew!) and then return for the transvaginal ultrasound. Apparently this is a technique used for most pregnancies these days and it involved an extremely long but thankfully skinny wand shaped instrument with an ultrasound camera on its tip, that you insert into yourself, and then the technician moves ii up, down and all around inside. It was quite uncomfortable during portions of this procedure and induced nausea at one point, albeit not severely. Here is what the result of one looks like:



Once this procedure was complete, I was free to go. My friend, D, drove me home after a great breakfast at her favorite greasy spoon. Nausea gone--Yum!

One last word of caution, do not order prescription refills from Group Health's automatic refill service unless you have more than a week of your original prescription left. It took a great deal of effort to obtain a 'filler' prescription late this afternoon from Group Health at their Northgate pharmacy, which will cover me while I wait for the main prescription to be delivered by 'snail' mail. Luckily a friend was able to do the phone work and help out in talking to the pharmacist-- because my voice is so far gone at this point, I even have difficulty ordering from a McDonald's drive in. I continue to be amazed at how very much I relied on my voice to simply transact the mundane business of life, until this happened. These days, I am a stick at conversation. But on the other hand, it has kept me from telling certain people exactly what I think of them, when pushed too far. So perhaps, it is a good thing as well.

And I still can write.