July 7, 2010
A Tea Party
Portland Firefly has found an easy fun way to entertain that does not wear her out too much. I have started having tea parties at my home.
Tea Table by PDXfirefly
I start out by deciding who I want to attend; and it is usually a very small group — usually two or three others in addition to myself. I make sure that the people attending are compatible in some way. This does not mean that they have to know each other — just invite people who you like that you think would get along with each other and may have a common interest.
I have a beautiful dining room – very light and airy – with comfortable chairs so I set my dining room table and that is where we have our tea party. Mine is a little more formal than you need to have it; but that is how I like to entertain ~ comfortably elegant. I have a lot of pretty items and it is fun to get them out and use them; they aren’t doing anyone any good sitting in the drawer or cabinet!
Because of my limited energy levels, I plan my menu several days in advance and I write it down. I also assemble my serving pieces and get out the dishes and silver that I plan to use. I clean the house several days ahead of time, so all I have to do the night before is to freshen up the place. Besides we will be doing so much talking that no one will notice a little dust or disorder. And, if they do, well…. they don’t have to come back again!!! The big advantage of preparing the house ahead of time is that I have more days to enjoy a clean house! And for someone with cancer ~ cleaning the house is a big deal, believe me.
Now what to serve…. I usually serve only one type of tea which I make in the kitchen in my best tea-pot which I then bring to the table and set it on a plate lined with a doily to catch any drips. The tea that I serve is called Good Earth – caffeine free original. It has a naturally mild sweet and spicy taste and I have yet to find someone who does not like it.
I have a tiered serving dish that was a gift a long time ago. It is perfect for putting tea goodies on. I usually serve home roasted nuts, fresh berries, dried apricots, dates or hibiscus flowers, a wrapped cheese, fresh made (just an hour ago) scones, chocolate truffles, a vanilla cream filled creation, cucumber sandwiches, and maybe a special small cookie such as a meringue. Use your imagination ~ you want to have a variety of textures and colors on you serving tray ~ and make the items small sizes and easy to eat with your fingers.
To accompany the scones, I serve Raspberry Jam, Lemon Curd and butter in separate dishes with their own tiny serving spoons. If these items are dished out and refrigerated an hour (or more) before your guests arrive, you can set them on the table as you answer the doorbell and they will still be cold at tea time. You can have your tiered tray of goodies on the table as well or on a nearby table or just around the corner on the kitchen counter. It should be close enough so that it will be easy to grab it and set it on the table as your guests seat themselves. Always reserve the seat closest to the kitchen for yourself!
As my guests arrive I have them sit in the living room and when everyone has arrived, we go to the tea-table. At that time , I’ll bring in the warm scones and the tea. I actually have the water all hot well before my guests are scheduled to arrive. It will stay hot on the stove (with a lid on it) on low temp once it is brought to a boil. I also ‘scald’ my tea-pot. That means that you put very hot water into the pot to warm it up before you actually add the tea bags and hot water for tea. It helps to keep your tea hot longer. You can actually make your tea in the kitchen when your first guest arrives (hopefully your remaining guests will be there soon). That way, you can all spend more time at the table visiting and enjoying the tea goodies and each others company.
Because, the whole idea of a tea party is to visit and create time together with your friends.
Now, this may sound like a lot of work to some of you out there. But remember, you are doing all of the prep work ahead of time so that you will be refreshed and able to enjoy the time with your friends. I also like to have several tea parties planned near each other. Maybe one on Tuesday at 11:00 am and another one on Thursday at 2:00 pm with different friends. I already have the food and everything is out and ready to use, so it is pretty easy to do it twice.
June 29, 2010
Follow-up Doctors Visit
I had my second two-month follow-up visit at my doctors last week and I am doing well. Everyone says that I look good (thanks to make-up!) and I do feel good. I still get easily fatigued and I am still trying to get rid of the neuropathy (which can become permanent).
My last several CA 125 results have been bouncing back and forth between 12 -13 -12 – 13 -12. This time it went up a little bit to 14. It was down as low as 7 at one time. The normal range for this test is 30 or below and mine started out at 3000, so I am still in the normal range and really not too concerned about it yet. Doctors also look at ‘symptoms’ and usually do not restart chemo unless one becomes ‘symptomatic’ (exhibiting symptoms). The exception to this would be a rapidly spiking CA 125. If my CA 125 went up dramatically in a short period of time, I would be restarting Chemo immediately.
And so, for now, I shall continue on my course of treatment. What is that? I am glad that you asked….. Nothing! Just living life and enjoying every minute and making moments and memories. I am enjoying my friends and family and planning my travels. As some of the chemo’s side-effects start to wear off, I’ll have more energy and a clearer mind (no more Chemo-Brain) so that I can finish my writings.
June 15, 2010
Angiogenesis ~~ what?
Portland Firefly just watched a video that discusses “Can we eat to Starve Cancer?” The process has to do with increasing blood vessels or inhibiting them and is called angiogenesis. In the case of cancer, there are too many blood vessels (feeding the tumors). The premise is what you can eat to influence the production (or non-production) of these blood vessels.
The video is fascinating and even though it is a little bit technical, William Li, the presenter makes the information understandable for most people. The video is 20 minutes long, but be prepared for it to go by quickly. I even decided to watch it a second time, because I found it so interesting!
William Li presents a new way to think about treating cancer and other diseases: anti-angiogenesis, preventing the growth of blood vessels that feed a tumor. The crucial first (and best) step: Eating cancer-fighting foods that cut off the supply lines and beat cancer at its own game.
In this video, Li reminds us that the drug Avastin is an angiogenesis drug. Avastin has just recently been approved for treatment in Ovarian Cancer cases. In fact Portland Firefly has a friend who has successfully been on Avastin for two years for treatment of her Ovarian Cancer.
June 7, 2010
Why I Stopped Chemo
Background: I was diagnosed with Primary Peritoneal Carcinoma in March, 2009 and began Chemotherapy immediately. In May, 2009, I had surgery and then restarted chemotherapy a few weeks later. In October 2009, I was off Chemo for about 8 weeks and then the end of November 2009, I restarted what is called consolidation or maintainance chemotherapy. It was to last for one year.
Consolidation Chemo has pros and cons. If the standard regimen of Chemotherapy did not get all of the cancer cells, then hopefully, the consolidation chemo will zap the rest of them. Some feel that consolidation chemo does no good at all. One is either cured by that time or not. And it will be just a matter of time before the cancer returns. This cancer almost always recurs. If that happens, then I’ll be back in chemo right away. Many patients have 2,3, 4, 5, or 6 recurrences. The key is how soon the first reoccurrence happens. The longer the time from the end of the first treatment and the onset of the first reoccurrence, then the better for a longer term survival.
Ever since my first chemo in March of 2009, I have experienced side-effects; some of which can become permanent. Even though I had a remarkable response to the chemotherapy, my Doctor has always been keeping an eye on the side-effects. In January 2010, she expressed concern about these issues and we decided to watch and pay closer attention to the side-effects over the next two months. During that time, Portland Firefly became progressively fatigued and other side-effects either came up or continued.
The CA125 is the blood test that is done to check the progress of my cancer and it continued stable from December through February, March and April. That information added to the side-effects that were wearing out Portland Firefly led us both in the same direction. And so we made the decision to discontinue the consolidation chemotherapy in March 2010.
This decision comes with much hope. Number one, we hope that the prior chemotherapy took care of this disease and I am cured. Number two, if not cured, then we can hope that the treatments that I received will stave off this disease long enough for me to enjoy my life again. Number three, Portland Firefly was just so worn out that she had no real quality of life. I was so fatigued that I could hardly take care of myself and my home. Travel was out of the question as were many local events that I wanted to enjoy.
What is the biggest thing that I hope to accomplish by going off of chemo at this time? Portland Firefly hopes to be able to reclaim her zest for life and to bask in the beauty and the joy that is this wonderful world. I can only do that by having a decent energy level and so that is my focus for the next year at least.
June 6, 2010
Energy Level
As you know I had a terrible cold virus that included fatigue, coughing, a slight sore throat and an unusually high fever (102). It lasted a full five and a half weeks!!!! I feel as though I finally have what can be considered my ‘normal’ energy level back. I say considered normal because I still am not anywhere near normal as far as my energy level goes, it is just what can be considered normal for me a this time.
I was reminded this week that it can take from 6 months to a full year after chemo stops for one’s energy level to return to near normals! UGH!!! One year! I have too much to do this year to not have lots of energy! I guess I’ll just have to keep pushing myself to get out and do things and then rest when I can.
May 29, 2010
I’m Depressed
I know … it’s Memorial Day weekend and I should be happy and sunny … but I’m not. I’m depressed.
It has been raining here for the last two months!!! And I was ill for the last five weeks with that icky cold, cough, throat virus thingy. And on Monday, I woke up with a terrible kink in my back. The chiropractor says it is a triple case of facets syndrome and very difficult to break up. So.. I have been hurting on top of everything else! And… I have no energy. If I go out and do an errand, then I come home and just want to sit in the recliner. I try to go out for a walk in the rain, but that isn’t much fun because it is also cold. I used to like walking in the rain — when I lived in Southern California!
I know that this post sounds like “poor me” but that is the way I feel right now; so there!
I think I’ll go and dig out my ‘light box’ and sit in front of it for an hour or so. Maybe that will help. But don’t worry about Portland Firefly because she will come out of this eventually and will be just fine.
April 22, 2010
Off Chemo!
Last month, I decided to take myself off of chemotherapy. It was a big decision and one that my doctor and I had been discussing for four months.
The reason I say that “I” took myself off chemo is as follows: Last month I had my regularly scheduled appointment with my gynecological oncologist set for a certain day. The doctor would be out-of-town that day so we moved the appointment up 4 days. But…the day before my appointment, I received a call from the scheduling nurse stating that my doctor unexpectedly couldn’t make her appointments that day and she wanted me to be seen by her colleague.
Normally, that would have presented no problem at all. But…..This was a very important appointment for me because I was going to discuss with her exactly what it meant for me to discontinue the chemo at this time.
I started crying on the phone with the appointment nurse. Not sobbing, but again that pitiful deep in-breath “I really don’t want to cry” controlled release of deep emotion. I explained how this was a VERY IMPORTANT appointment for me and that I really didn’t want to see anyone except MY Doctor. We decided that I would just skip the March appointment and wait until the next month to see my doctor.
Well, last week was my April appointment. My Son accompanied me as he has many times; to provide moral support ( and physical should it be needed); to ask questions that I wouldn’t have thought of; and to help me correctly remember what was said. I am always grateful for his gift of loving support and time that he gives willing when I am in need. He has made me extremely proud of the responsible man he has become and I have expressed these sentiments to him and his wife many times.
March 20, 2010
One Year Ago Today
One year ago today, I saw my Oncologists for the first time at 7:30 am. By 10:30 am, I was hooked up to the IV and starting to receive the Chemotherapy poison that would save my life.
This is an emotional day for me and one that will bring much reflection.
It is also the first day of spring….. A new life, a new beginning; hope and beauty transcend the dreariness of the dark days of winter solitude. A perfect metaphor for my life!
March 15, 2010
The Gerson Connection
On the second night at sea, the suggested dress for dinner was ‘cruise elegant’ as it was the Captain’s Dinner. I got dressed up as did the other dinners in the Dining room.
It was necessary for me to pass by several tables on the way to our assigned dinner table. On this particular evening, as I was leaving the dining room, I passed by a table that held three generations of vacationers. Grandma & Grandpa, Mom & Dad and two curly blond-haired boys ages 4 and 7. The women were all dressed up and all the males at the table (including the littlest ones) were in their suits and ties.
The little boys were so adorable and so well-behaved that I couldn’t pass by them without saying something positive. So I did. I said ” Oh my! You look so handsome and polite eating your ice cream!” as I looked directly at the littlest member at the table. Then I noticed the older boy at the opposite end of the table and I said the same thing. Then I noticed that the men were also dressed up and I acknowledged them, too! Now it was time for the women, I couldn’t leave them out. They were a very beautiful family from the youngest to the eldest and the children were very well-behaved as they enjoyed their ice cream!
From then on we always greeted each other as I would pass by their table.
Two days later while in line at what I call ‘the concierge desk’, the man behind me started talking to me. It was the Dad, whom I didn’t immediately recognize because in his baseball cap and tee-shirt he looked much different than he did in his ‘dining room clothes’.
He asked if I had a few minutes because he felt compelled to share something with me. We started talking and then we sat down in the adjacent seating area to finish our conversation while his wife and children joined him.
He started asking me about my cancer which I was happy to tell him about. He then went on to tell me that they had started ‘juicing’ and drinking green drinks many months ago. He felt that there are numerous benefits to drinking wholesome fresh squeezed juices and wanted to share that information with me.
He then went on to tell me there is a doctor who has a cancer protocol of juicing along with other things and has had some remarkable results. The doctors name is Gerson and he realized that their waiters name is also Gerson. And what are the odds of that? And I am the only person that stopped by their table. And then here he was in line behind me … Well!!! He just felt compelled to tell me about this. “It’s as though the universe is telling me something” he said to me. And he would not have felt right not telling me about The Gerson Diet.
I was very happy to have this information passed on to me even though I had previously heard of Dr. Gerson, but I’m just not into ‘juicing’ just yet!
PS: I have started drinking ( well, trying to drink) a ‘green drink’ on a daily basis. I have to admit that I do feel energized whan I drink it, but the taste isn’t the best. Not the best and not the worst –so maybe I’ll continue with the green drink for a while anyway!
March 12, 2010
Cruise Departure
Last August, I received information that my high School Alumni were going on a cruise. I thought that it sounded like a good diversion from my rigorous chemotherapy schedule and it would give me something fun to look forward to, so I decided to go on the Cruise which was to be in February.
I called a classmate that I sat near the last few class reunions. I can get along with anyone and most people are flexible when rooming with others and since she has travelled a lot, I thought that she would be a good travelling companion for that reason. We decided to room together on the cruise.
Well, the Alumni part of the cruise was cancelled. I called my roommate and asked what she wanted to do. She said that she had not purchased the travel insurance (which I had purchased) and so she was locked into the cruise. She told me that if I cancelled she would be responsible for the entire cost of our cabin herself. I didn’t want her to have to bear that cost and decided it still could be fun, so I decided to go even if our school mates would not be there. Secretly I hoped that some of them would keep their reservations and show up on the cruise anyway, but none did that I could find.
In November, I told my Doctor about my intended trip and we worked my Chemotherapy schedule around this trip. I would have Chemo three weeks before the trip and then have chemo the day after my return. One has to do what one has to do!
I had fun deciding what clothes to take for the cruise. I checked the weather at our destination ports and packed accordingly. I had to fly to California where the cruise departed . I’d be spending the night before my flight at my Son’s and he took me to the airport for my early morning flight. I was met on the other end by a dear childhood friend and we spent the day together visiting before she dropped me off at the ships terminal. After boarding the ship I found my cabin and my roommate was already there. I had chosen to schlep my luggage myself ( I am learning to travel lighter these days ~ lighter being the operative word ~ not light) so I could unpack immediately which was really nice because I felt settled in for the week and had only been on board for less than an hour!
We made our way up to the buffet to have a snack before we sailed and we sat and visited for several hours. During that time, I saw a ferry boat leave for a local island. My Daughter and her Number One were on that Ferry boat and she called me as they passed by our ship! It was a beautiful day and soon the ship was ready to set sail. I hurried out onto our balcony to watch the departure and saw the harbor slip past us. It was my first time on a cruise ship in over 25 years and I wanted to enjoy everything about it.
February 26, 2010
Chemo Once More
Portland Firefly had Chemo on Monday. This was the fourth in my scheduled yearlong maintainance chemo sessions.
Last month, my doctor asked very pointed questions about the side effects that I have been experiencing with this round of chemotherapy. When I stated that “I am completely committed to the year-long completion of this maintainance chemo.”, she reminded me that I am not the only one that can take me off the chemo. As soon as I recovered from her statement, I realized that, yes, of course, she can stop my chemo any time she thinks that it isn’t being helpful or any time she believes that the side effects are becoming too intense. Some of them like the peripheral neuropathy that I have continued to experience can become permanent, even resulting in a person becoming wheelchair bound.
There are some side effects that have become increasingly intense for me. One is the fatigue. it used to be that I’d have about 10-14 days of energy (just prior to my next chemo session), but this last month I only felt like I had a few energy filled days. Of course, I was travelling and I had two presentations, but I still feel that the fatigue was more intense than it should have been.
Also the peripheral neuropathy has continued to present problems for me. I experience numbness in my feet daily even taking the L-Glutamine and extra B-Complex vitamins that have been recommended. This numbness in my feet is the reason that I cannot wear high heels and also is one of the reasons that I have not gone dancing for almost a year.
A minor side effect, but one that deserves consideration is that of hair loss. I have continued to lose any little remnants of hair that had returned while on my trip to Spain. The few hairs that remain will certainly fall out in two weeks. I was really excited to have my cute curly hair for 8 weeks and I’ll really look forward to seeing it again whenever that time may come!!!
And so, I will be keeping careful track of my side effects this month so my doctor and I can make a decision about whether to continue my chemo or to stop it at this time. I have done a lot of thinking about this issue during the last month and it will continue to be on my mind the rest of this month. Any decision that will be made will be made with careful consideration and consultation with my family as well as my doctor. But if you ask me for my ‘gut feeling’, I will tell you that I think I had my final Chemo last Monday. And I am perfectly fine with that!
January 25, 2010
Fatigue
Portland Firefly has been so very fatigued these last several weeks. Oh, there are days when I am able to accomplish several chores but then I am totally worthless the next day! I also think that the dark circles under my eyes are deepening; at least they seem more prominent to me. I also find that I need more sleep at night. One night last week, I slept for 11 hours! And that was on my ‘good’ week (the week just before my Chemo)!
January 12, 2010
Weary
Portland Firefly has been debating whether to write this column for the last 12 days. this morning at church I decided it was OK to tell you what I have been going through. Again the object is to maybe help someone else who may be going through similar emotions.
We all become discouraged sooner or later in our life. The are many reasons for our discouragements… physical, mental , emotional, environmental, seasonal.
These last 12 days or so Portland Firefly has been struggling to fight the depression and discouragement of her situation. Oh, nobody knows because I keep it to myself like most of us. I thought that it would go away in a day or two, certainly in a week; but now it is almost two weeks later and I am still feeling weary, overwhelmed, depressed, discouraged.
Yes I had Chemo 14 days ago. I have been on Chemo since March, 2009 and it will continue until the end of October 2010. I am about half way through and I am now starting to feel very weary and worn out from the fierce battle I have been fighting inside my poor body. My beautiful body, now scarred from surgery, getting fat from Chemo drugs, too tired to dance the night away even once a month much less four times a week as I did pre- Cancer. I never had great hair, but I used to have hair –now it is scarves and wigs. I don’t care how great you tell me I look in them, I am tired of them. Too sensitive to ‘off-gassing’ fumes from carpets and draperies that I have to ‘step-outside’ for fresh air at stores and buildings. Eyebrows and eyelashes disappearing again slowly but surely. Skin so dry that it tears if I scratch it too hard. Then it takes a month or more for the scratch to heal because of my lowered blood counts and immune system. Skin so dry that you should not take a long hot healing shower, because it only makes your dry skin dryer. Numb toes and feet that only get more intense as therapy progresses. Having people refusing to let you get off the phone when you politely tell them you need to hang up now because you are ill. Noticing how the once non-existent dark circles under my eyes are deepening. The wonderful Port-a-cath that ‘bothers’ you night and day just because it is a foreign object in your battling body.
Oh, I make myself get up and get dressed and go out of the house most days. even when I’d rather just stay in bed. Most of the time people tell me that I look really good when I go out, but they have no idea the effort that goes into looking good these days. I told my doctor that I should just go out looking the way I feel and then maybe people would understand what I am going through. Knowing me as she does, she said she doesn’t ever see that happening. And she is right! I won’t even answer the door unless I look presentable.
Yes, Portland Firefly is weary, worn out, discouraged, despondent, downcast and depressed but she found hope this morning. Here is it for all of you to read…from Isaiah 40:28-31
December 28, 2009
Chemo Again
Well, here I sit in the Treatment room ~ read that Chemo room~ at the Cancer Center. Today I am very cranky. For some reason, I never sleep well the night prior to my chemo. I choose one of my favorite seats in what was a quiet area of the treatment center and had just started to nod off when a group of three people came in and sat across from me.
The two men had very deep, sonorous voices and they woke me up immediately. I was not happy because my drugs made me sleepy and I wanted and needed to nap! So I gathered all of my things from the little Chemo nest I had made and moved them to a far area of the treatment room where it was quiet….. Again I nodded off and was just dreaming when … a new arrival right across from me … a visitors cell phone began to ring loudly… She not only answered it but proceeded to talk in a loud voice for many minutes. Sleep again was interrupted…. The visitor was with a sweet elderly lady that I have seen several times before and I like her. It is because of this ‘chemo-kinship’ with her that I do not send a stern look to the insensitive visitor! I send a sweet loving smile across the aisle to this elderly cancer sister who knows what has happened, but cannot do anything about it. I admire her fighting this illness at her advanced age. I cannot tell if she is winning or if the cancer is winning, but she looks more tired than the last time I saw her.
I then tried to doze back off after a carefully executed trip to the restroom. Not an easy thing to accomplish because you must first remove your blankets, being careful to not disturb the drug access to your port (you don’t want to pull out the lines), get out of the recliner, find your shoes, get up (be careful – you might be dizzy) and take your chemo drug holding ‘tree’ with you as you make it to the restroom. It is really fun to not get all tangled up in the chemo drug lines while in the restroom. Then reverse the process and return to your place and try to get settled once again. OK, I thought, I am so weak that I think I can go back to sleep….. I get all settled in again for a nap… when… you guessed it… another interruption……
A new patient comes in with her husband and daughter. They sit right next to me and make plans to play cards during the wifes chemo delivery! Reclining with my eyes shut tight, I think , “Ok, that should be OK.” but it isn’t! The husband is an expert at shuffling the cards and he does so many times noisily. Normally it wouldn’t bother me, but today Portland Firefly is cranky and tired. Now, there is no way that I can sleep. If I fall asleep, I’ll be awakened shortly by the noise of the rapid-firing shuffling cards.
I am really tired and really cranky at this point. I resist the urge to let out a great sigh and scream ”Auuyggh!!!” ” People, quiet down. I’m sick! I need to sleep and you are keeping me awake!” I envison throwing a ‘toddler-type tantrum’, but I take the high road.
Instead I think of (what I consider to be ) a wonderful solution. There are two types of people in this room… The ones who just want their drugs and want to rest while getting them; and those who want to ‘party’ while here. As I look around the room, I see that most of us want to rest… but it is the few who want to party, that are making it impossible for Firefly to rest.
I decide that the room needs to be divided into two areas –the ‘Quiet’ Zone and the ‘Party’ Zone. I pass my suggestion on to the chemo nurse and eventually send a long email to the person in charge of such things here at the cancer center.
Over the years, I have found that it does no one any good to just sit and complain. If you have a suggestion, then write it down and see that it goes to the correct person. If they can do something, they will, if not… then I have done what I could to remedy the problem.
Gosh, I sure hope that they take my suggestion under careful consideration.
Portland Firefly is feeling much better after coming home and having a good nap and a nice dinner! Now to wait for the side-effects to begin…. I wonder what new experiences will ‘thrill and delight’ me this week?!
December 18, 2009
From Hair on Out
A few days ago I wrote that my head was aching and that has been known to be a precursor to my hair falling out. I knew the signs, but since my hair has just started to grow back in, I didn’t want to believe that it would really happen a second time. Well, I was wrong.
Wednesday night when I was washing my hair, I kept getting hair in my mouth. “Oh, no,” I sadly thought. “I was told by more than one person that it would most probably fall out, but I wanted to believe that I was different.” My head hurt so much… it is so tender that I cannot even touch my hair without my head hurting. Imagine barley touching your hair and the dull aching pain radiating into your head.
So I got out my trusty hair cutting scissors and started cutting my new 1 inch curly locks (well almost locks). My hair fell into beautiful tiny crescents on the sink and counter. I have never had curly hair before and I really hated to cut it off. I was after all just starting to get used to it and now I had to cut it off.
The reason I choose to cut my hair really short (almost completely off) is because when it starts to fall out, you have hair everywhere. It gets in your eyes, in your mouth, in your toothpaste, on your clothes, in the bed, on your towels on the computer and is really a mess.
But this time I do not plan to go to the beautician and have my head shaved like I did last time. I have been through this once and right now I am less willing to lose my hair than I was the first time. I guess that means that I am much better than I was last time! And you know I am!!
December 7, 2009
Chemo Restarts
Last week, Portland Friefly started a year-long series of Chemotherapy. I have been on Chemo ever since my diagnosis last March and I had a little break from Chemo when I took my trip to Spain. I was not looking forward to the upcoming year-long ordeal, but I am tring to take it one treatment at a time. And that is what I did last week for the first session.
I am now receiving only one cancer-killing drug ~Taxol~ but there are several other supporting drugs that are administed through the IV during each treatment. These supporting drugs help to prevent immediate ill-advised side-effects, such as nausea, rashes, constipation, etc.
In the past, I have usually had 3 days before I started feeling the unwanted side-effects of the Chemo, but this time it was totally different. It was almost as though I had received a different drug (which I know I didn’t). Within a few hours I had a horrible headache which didn’t go away for days. Then the next morning, I started in with nausea (which usually doesn’t come on for 3 days). And shortly after that, my joints and bones began hurting. I had shooting pain and also a sharp constant ache mostly in my legs, but also in my arms and other parts of my body. I had to take ‘big gun’ pain pills for several days and I eventually had a reaction to those pain pills!!! Aghuuuugh!!!! If it isn’t one thing it is another! I thought that I was doing great until I served a dinner where I forgot to set out part of the meal for my guests! Chemo brain!
Today, I am just sort of tired and not wanting to do much, but since the sun is shining, I’m going to force myself to get dressed and go out and do a few errands.
October 8, 2009
Great News
Portland Firefly has some very good news ….. in fact Portland Firefly has some great news to share with everyone!!!
This week, at my regularly scheduled appointment, my Doctor gave me the option of not having any more Chemo at all or continuing with what is termed ‘maintance Chemotherapy’. In any event I have at least one month without Chemotherapy to think about it. Yea!!!!!
I was so nauseated last session with just one drug, and every time I have Chemo, the side effects become more intense. I am so-o-o-o happy to have the option of not having to put poison into my body for a while.
Right now I would like to think ~and sometimes I do~ that I am cured. But intellectually I know the cold hard facts of this horrible cancer and I know that the possibility of recurrence is very real. The only variable is when…. it decides to come back. I have put myself on the 7 year (or longer) survival plan. I would be so happy with seven more years. But right now I am thrilled with the fact that I’ll most probably definately have the next year!!!
October 5, 2009
Chemotherapy Room Mural
Chemotherapy Room Mural by PDXFirefly
This is the beautiful mural in the light airy Chemotherapy Room that Portland Firefly has been ‘visiting’ for the last six months. I usually try to sit where I can look at it and relax and contemplate or sleep. I find it very soothing to look at.
October 1, 2009
A Strange Dream
This morning I slowly awoke with the remembrance of an unusual dream. In fact I think I was still dreaming as I was coming into consciousness. Maybe I just wanted the dream to continue because it was such an interesting story.
Well, it was interesting to me, because it was about me and I was in the dream. The scene opens in a lovely grassy field where you might have a picnic . Except the feeling was that of a festival. Pretty soon a group of people came into view — they were the festival . The best way I can describe them is that they were like a band of gypsies in appearance – with colorful clothing, dark hair and having strong interesting features. Not fine features that made them pretty, but chiseled, then rounded features that were varied and almost ugly, but not. Their features were strong and rugged and pleasant; the word that best describes them is swarthy. They were dark, strong, rugged and exuding strength. All of which made the men handsome in an extreme way, not in a pretty-boy way.
And they were very strong. The men formed two towers; but towers of men with only one man on the bottom supporting each tower of men. Not only that….the men on the bottom were bent over backward to support the others! I was impressed with their strength! I had to talk to them. And just as our conversation began, I woke up! No, that’s not the whole truth. I woke up just after one of them kissed me on the cheek! Maybe he is my Prince Charming and I am Sleeping Beauty. After all, I did wake up after he kissed me
Ok, I don’t think I even want to know what it means, but you are free to give your opinion! I actually think that they may represent my Nobles, which is what I call my Chemo drugs because my Nobles are strong and powerful and effective! And they are killing my cancer and I love them for that!
September 19, 2009
Waves
The waves that I’m writing about have nothing at all to do with the ocean. They have to do with Chemotherapy side-effects…. and not good ones.
Do you remember that I told you that you would have to wait until Thursday for me to let you know how the new Chemo protocol was going? Well, I was so toxic (read that as sick) that Saturday is the first day that I felt like writing.
On Monday, I had five drugs, the Carboplatin being the big cancer fighting drug. The other four support the Carboplatin and help alleviate some of that powerful drugs side effects.
Since I have been taking some strong Chemotherapy since March now, (6 months!) I am well aware of the side effects. The one thing that I don’t like however is the fact that the drugs toxicity becomes cumulative in my system. That means that every time I have chemotherapy, my body becomes more and more toxic. You can read that as ~ the side effects become more severe. This week hit me hard.
As I mentioned, I felt ok on Monday and Tuesday. But Wednesday about noon I started “going downhill” and feeling very “”unwell”. But I sucked it up and took a 20 minute walk hoping that would help. I don’t know if it did or not, because that is about the time the waves of nausea started.
I have three very good anti-nausea drugs to take. I took the “big-guns” Zofran first off about noon. After my walk and ginger ale, I still felt nauseated, so I took the second drug, compazine. Both drugs make me sleepy, but the compazine really knocks me out. So, after my 4 hour nap, it was time for dinner and a little TV and more anti-nausea drugs. I had a very good nights sleep Wednesday night as I ignored the waves of nausea.
Thursday, the same scenario, except I took two – two hour naps that day. Even with the anti-nausea pills, I was still fighting the waves of nausea off and on. This continued through Friday night. Saturday morning I decided that I should be able to stop taking the anti-nausea drugs and get by on just the ginger ale. As of Saturday evening, I still have some slight queasiness, but not enough to want to deal with the side effects of the anti-nausea drugs. You see the anti-nausea drugs have some strong side effects in addition to the sleepiness. And I am tired of dealing with those other side effects, too.
Along with the waves of nausea, I was experiencing waves of cold sweats and hot flashes. I would just about get cozy with my blanky and then I’d get all hot and clammy. I’d take off my scarf or hat, throw off my quilt, get up and get a drink of water, feel a little unsteady and then start to get chilled! I’d be all hot and cold at the same time. This continues even through Saturday night and I expect it will last for several more days.
In fact I made myself go to the Saturday Farmers Market and I had to sit down about five times during the short hour I was there because of the waves of hot flashes/ cold sweats /icky feeling I kept having. But the bounty of fresh produce I acquired was worth the outing!
Waves of nausea, waves of hot flashes, waves of clammy cold sweats, waves of feeling icky~~ these are not the waves I crave. The waves I crave are ocean waves!!!!!
September 10, 2009
1 Year Anniversary
Today, September 10, 2009 marks the 1 year anniversary of Portland Firefly’s weblog.
It has been a great year for me and during that year I have published 302 posts on this website. With my diagnosis of Primary Peritoneal Carcinoma my writings became decidedly more personal and directly cancer related. As I continued my Chemotherapy, I made the decision to author a book on Ovarian and Peritoneal Cancer. My weblogs will make up a portion of that book.
Also please remember to fly your flag tomorrow, September 11, 2009, the 8th anniversary of the 9/11 terrorists attacks on our country. Be sure to read my post for tomorrow…. it tells of the times I had the terrorists onboard my flights prior to the 9/11 attacks.
Thank you for reading and I hope I can continue to present articles of value so you come back again and again.
August 21, 2009
Chemo Nausea
Portland Firefly is having a difficult time with Chemo this session. I returned from a much anticipated and well enjoyed trip to Central California on Sunday afternoon. Monday I had my Doctors visit followed by my Chemo session. Tuesday I felt a little tired and stayed close to home, catching up on some laundry. On Wednesday, I just wanted to sit around and still didn’t feel like getting showered or dressed. I took a nice long nap in the early afternoon.
Thursday morning, I said “Enough of this!” and got dressed (but still didn’t feel like taking a shower) and took a short walk around the neighborhood. I then headed out to the grocery store for some fresh fruit and popscicles. Even though I took my expensive anti-nausea pill, I still felt quite quesy and it was all I could do to drive to the store and get the few essentials that I needed before I hurried back home.
When I returned home, the smell of the beans that I had put in the crock pot to slow cook all day really bothered me a lot, so I unplugged the crock pot and took it outside. I have a lovely covered patio and fortunately there is an electric outlet out there. So I just plugged the crock pot into the outlet on the patio and the beans will cook and the smell will stay outside and not bother me!
Since I’m pretty sensitive to smells this day, I’ll probably cook my rice in the rice cooker outside on the patio, as well. My energy level is low and my brain is a little foggy today, so even though there are several phone calls that I want to make, they will have to wait for a few days.
On the way to the grocery store, I listened to “The Procession of the Nobles” by Rimsky-Korsakov which is my”Chemo Music” for killing off my cancer cells. This music is so stirring that it always increases my energy level…but not today. It is as though I was listening to it through a fog and I was hardly aware of it. But I consciously reminded my body, that it could hear the music and that the chemo drugs knew their job was to kill off all the cancer cells they could find. I also reminded the cancer cells that they want to “come out” from hiding and go see that beautiful music. They will then be neutralized and I will be cured. I listened to it over and over again while I was driving to the store and on the way home.
PS: I forgot to get Ginger Ale on my trip to the store and later that day I was so nauseated ( even after taking my nausea drugs) that I had to call my neighbor. Every time I have seen him since my diagnosis 5 months ago he reminds me to ask him if I ever need anything. Well, this afternoon, I needed ginger ale and was too sick to go out. I called him and he returned a few minutes later at my front door with not the one 2 liter bottle I had requested, but with 4 two liter bottles of ginger ale! He even insisted on opening the first bottle for me –I was too weak to open it myself. After two large glasses of ginger ale, my stomach finally started to settle down and I felt a lot better. Amazing stuff –ginger! Thank you, Mitch!
August 19, 2009
Sensitive Firefly
My Chemo room is a large bright well lite room with a beautiful calming mural at one end. The room is furnished with about 40 pale green comfy recliners pleasantly arranged and separated by work tables for the use of the chemo nurses .
I usually try to take an available recliner that faces the mural and this time was no exception. I settled into my “favorite recliner” and tried to get comfortable. Even after the life saving drugs were attached to my portacath for safe delivery directly into my vein, I still had an uneasy feeling. I shifted my position several times. When my Chemo nurse came to attach yet another drug into the portacath, I mentioned to her that there was a strange “energy” in the room today. A very unusual energy that I had never felt before.
Usually I feel very relaxed, very much loved and safely cared for in this room. But today there was another disturbing undercurrent that I couldn’t identify along with everything else. She mentioned that there was a patient who had left ”my” recliner just before I walked into the room. I said that that must be what it is; the uneasiness is so strong, it is still here. She confirmed that the patient was very upset about being there – a new diagnosis I guessed and unexpected and unresolved as of yet. I thought about it alone for a few minutes and I knew that it had been a man in the chair; I also strongly suspect the position of his cancer which I did not mention. I kept trying to put a woman in this chair (because most of the chemo patients are women), but the sense that it was a man was so strong that I knew it could only be a man. My Chemo nurse confirmed my sensations. We were both amazed at this new found sensitivity to the energy.
How did I deal with this? I prayed for him; for peace in his diagnosis. Somehow I know that his is not a life threatening situation, it will be resolved. He is worrying for no reason. Woah, what a trip that was…. Unexpected, unsought, and sort of scary, too….
August 18, 2009
Another Chemo Side Effect
When I started my chemotherapy for my Primary Peritoneal Carcinoma, my Doctor gave me all of the possible side effects. Some of them I remembered, some of them I forgot about, and some of them made me go Hum-m-m??!!!
Possibly loosing finger and toe nails is one of the ones that made me go “Hum-m-m??!!” I tucked it away in the back of my mind 5 months ago and forgot about it. Then about four months ago, I noticed that the nail on both of my large toes had started to lift up and actually had ripped away from the newer nail growing out. I babied them so the nail would stay on and they did — until last Thursday. Last Thursday, they had grown out about half of the way and the top half of both large toe nails just “fell off”. Now it looks like I have a very short toenails on my big toes! Hey! It doesn’t hurt. and I have toes! so there! I am fine with it. I even still have my toe nails (what is left of them) painted vibrant purple!
It is just another battle scar for my fierce fighting body. Who cares about the scars if you win the battle? I don’t. The scars are just another part of the gift of this cancer that God has given me. I think I’ll consider them the “wrapping paper” part of my gift.
