Cycle 6: Day 8

I feel that I need to touch base with you and let you know that I am back to my normal self today. My friend Gene says that I am entering into the Spring of my recovery. I think that sounds so sweet and much nicer than saying I was dangerously close to being very cranky! I may need to remind myself if I begin to feel impatient and cranky again...I am in the Spring of my recovery. With images of Spring in my mind how can I go ahead and be cranky?

Cycle 6 : Days 2 - 7

On Saturday, day three, I decided that chemo and childbirth are similar: both are bearable if you remain focused; at some point you need the care of others; and with your “eyes wide open” you willingly experience the discomfort and pain again.

I am very happy and thankful to report that prayers were answered and I was spared the intense headache! Most of Friday was ok; toward the end of the day I began to feel the flu like symptoms coming on. Saturday was the toughest day; Sunday was easier; and Monday was much better. I still have periodic pings, pangs, and aches in my lower legs and feet but it is less today than yesterday.

I did not experience nausea and I have not had any food cravings. I kind of miss the food cravings – it was something fun to laugh about.

Sometimes Taxol can cause numbness and tingling in the hands and feet; most of the time this goes away when treatment is finished. The tips of the first two fingers of my right hand as well as the thumb have been slightly tingly and numb for several days. It is not painful, debilitating, nor irritating so I will not complain.

I am in that in-between stage of mentally feeling like myself again but physically not quite at the same spot. This is a time when I really have to work at being patient. What I definitely do not like about Taxol is that by the time I feel good isolation has started.

I will write more in a few days; thank you for checking up on me.

PS After I wrote this post I went on to reply to an email from my friend Gene. I found myself writing some "truth" in the email and decided that I needed to come back and share this with you also.

I don't tell anyone, other than God, the total stinky truth about the mental and physical effects of chemo. Donna has gone through everything I am going through - if you have read comments from her on the blog you have probably already figured this out; Margie is a friend who is also a survivor and although she did not need to have chemo or radiation she has experienced a lot of what I have gone through and by continuing to attend a survivor's support group she is very savvy of the journey; and my brother Holland has a customer that has just recently completed chemo. Each of these individuals has told me what I needed to know when I needed to know it; there is something to be said about timing. Perhaps I am trying to protect you - just in case you someday find yourself in this spot although I pray that you will not. I would rather you have received an encouraging experience from my blog - you will have enough stress at that time without thoughts from my blog contributing.

I do know that I am also trying to protect myself - in order for me to remain focused and continue to believe that the glass is at least half full I must not focus on the negative.

With all that being said, I must admit that sometimes a burden that is shared becomes lighter. So here is the paragraph that I wrote to Gene, "I really want to say that I am ready for this ride to be done. I want my hair back. I want the lymphatic fluid in my arm to drain properly all the time so that the discomfort goes away. I do not want to be in isolation. I want the pings and pangs in my legs to go away. I want all of my energy back - NOW!"

So there...that is the truth about what I was feeling when I first wrote this post. I don't feel that way right now, in fact I feel so much better!

Another friend Randy H. reminded me a while back of a time when Elijah was very alone and afraid. God sent an angel to care for Elijah twice and then he himself spoke to Elijah. Randy's encouragement to me was to remember that God did not speak to Elijah in the great wind, or the earthquake, nor did he speak in the fire. Instead, God spoke to Elijah in the gentle blowing of the wind (I Kings 19).

After reading this post script I do not want you to worry about me. I know that I am not alone and I know that this moment of distress is temporary; not because it could be one of my three wishes to a mythical genie in a bottle but because of the very real promises God has made and the blessings he sends to care for me.

Thanks for listening to some of the hard stuff and be sure to take away with you all the good stuff you may have received from this post. And, make sure that if you think I am handling this so well or that I am some kind of a special person that instead you give the glory to God. He is the reason I am who I am - if it were not for my study of his word and my determination to live in a way that glorifies him I would be a different person and most certainly handling this time of my life very differently.

Cycle # 6 Day One

Yesterday was infusion number two of Taxol and Herceptin and overall the start of cycle #6.

I slept through a good part of the infusion yesterday and that helped the long day pass by more quickly. (The infusion of Taxol is three hours and Herceptin is one hour, add another hour for seeing the doctor and infusion prep time.) In some respects the day is harder on Randy because his chair does not recline nor is he given a pillow and blanket warm from the oven.

The intense steroid hot flashes Tuesday night were fewer and less intense this time so I slept well. I did however wake up with a "steroid buzz" very early Wednesday morning and I finally had to take Tylenol PM in order to fall asleep last night - well really to fall asleep this morning at about 1:30.

I will enjoy today and prepare myself for the next few days of body aches that will probably begin tomorrow. Sleep is healing to the body according to my dear friend Dana who is an RN, so I will sleep through as much of the icky stuff as possible. My prayer is that I will not have the horrendous headache, swollen eyes and face but if I do, that it will be less intense than it was with Taxol #1.

I may not post again until next week when I am feeling better. Today I leave you with some thoughts about endurance....

"The manner in which one endures what must be endured is more important than the thing that must be endured." ~ Dean Acheson (1893-1971), American statesman from Plain Speaking: An Oral Biography of Harry S. Truman.

"I asked an endurance swimmer, "How is it possible for you to swim for twenty hours? What kind of mental attitude do you have?" She said, "I believe that the water is a friend. It wants to help me. It does not fight against me and I do not fight against it. We are working together." I often think of that when I am in the 'swim' of life. The waves and currents and the tides hit us all at times, and it is not always easy to say, "The water is friendly." It requires an act of faith, a volitional act; it means work, but most of all it requires a will to believe. The more we use this will, the more it becomes a part of us and the more natural becomes its application." Marcus Bach, author

Cycle # 5 Days 8 - 20

In an earlier posting I wrote that I had worn hats several years ago, here is a picture of April and I when she was in the fourth grade and as you can see I am wearing a hat. In fact, I still have that hat, and a brown wool hat; a white felt one; a very warm leopard print hat that I bought to keep me warm on our Alaskan Cruise; my favorite denium baseball hat with paint speckles on it; another baseball cap; and even a hat with The Bakersfield Californian printed on it (I won some kind of contest); a fancy peach straw hat that I wore on Ladies Day at the Santa Anita Race Track; a cute little straw hat that my mother-in-law gave me; and a big floppy straw hat and a little black hat to match my swim suits, I bought both of these hats for the Caribbean cruise. Of course I had to buy new hats because all but two of the hats I had were for winter or did not cover my bald head! I need a hat rack now.

It is the day before Cycle # 6 - hooray, only two more to go after tomorrow! Well really, only two more of the general chemo drugs and their icky side effects and isolation - the plan is for me to continue with Herceptin until approximately August 2007 (see the 5/17/06 post for further information about Herceptin).

So let's see what is there to report....

For the most part Taxol and Herceptin are much easier than Adriamycin and Cytoxan; I did not experience nausea and the fatigue, so far at least, is far less.

The worst of the icky stuff was the facial bloating, eye swelling, and gigantic headache on the second day following the infusion. The body aches are icky too but much better than the headache. By the time the icky stuff is finished - my days before the start of isolation are almost up and that's icky too.

I pre-medicate with steriods the night before the infusion - whew, the hot flashes are frequent and intense! With the first infusion it was only on the night I took the steriods, hopefully that will be true for the remaining infusions. Speaking of hot flashes, another icky thing is that I am now in a state of chemically induced menopause. The good news is that the chemo drugs are doing what they are supposed to be doing - the bad news is that I have hot flashes every day and every night. I probably need to read up on calcium so I can eat calcium rich foods and supplement if needed to prevent bone loss. One thing leads to another.....

The fatigue started on the 13th day but by the 17th day it was much better. It has been nice to feel like myself for a few days before the next infusion. It makes me feel like I am emotionally and physically ready for tomorrow.

I think my taste is back to normal - at least the salty taste is gone and thankfully I never had the metallic taste. Food tastes good but my appetite is off a little; I have had to remind myself to eat.

My hair is growing back - I now have a fuzzy head of gray and auburn hair and my eyebrows and lashes are starting to fill back in. Randy tells me that the new growth has a lot of auburn hair, well that auburn hair must mostly be on the back of my head or love truly is blind! ha

My nephew Josh was here for a few days - he lived with us several years ago for about a year so it was a homecoming vs. a visit. Before I could call out "You're home" when he came in the door he called out "I'm home". Home really is where your heart is and it is totally possible to have more than one home. I have never lived in Missouri yet when I go to visit my family I always say I am going home. Josh has three homes with the primary being with his wife Deana and the kids, the next his parent's home, and then ours. Daniel will eventually have three homes too when he returns to Missouri and gets his own place. Oh yes there is no doubt that he will return, you cannot take Missouri out of those boys!

Well that's it for now. I'm working on a couple more postings - follow ups to the posting of 8/9/06. I have posted a couple of times to the With Love, From Jan blog. It seems as though my writing comes in spurts.

Thankfully I am doing very well! Thank you for your continued prayers, notes of encouragement, and for checking in on me.

I have a long hand-painted sign that for many years has hung over the arch between our dining and living rooms, I will close with its message: LIVE WELL - LAUGH OFTEN -LOVE MUCH.

Brief Note

We have been busy with family - our nephew Josh has been here visiting (thanks Deana and kids for sharing him with us!).

I am feeling well however yesterday was the 15th day and I am a little tired. I will post something in the next couple of days.

Cycle # 5: Days 4 - 7

The side effects of Taxol - bone and muscle aches - started at the top of my body and worked its way down. Friday was the first and worst day of side effects - a horrendous headache; swollen eyes and face; and upper body aches. On Saturday the aches moved to the low back, hips, and thighs. And yes you guessed it, on Sunday the aches were focused on my shins, ankles, and feet. There are still some mild lingering aches around the lower half of my shins, ankles, and feet – sometimes I barely notice these remaining aches and for some reason at other times it is more noticeable.

Most important is that by mid afternoon on Monday I felt like myself again. I can best describe it at this time as a “Yahoo!” realization – as if the heavy fog that has been present for several days in my body and brain has just lifted and I can fully feel and think again. Happy songs about shouting, singing, and dancing run through my mind when I realize the fog has lifted!

Of course the first thing I did when the fog lifted was to have April and the kids come over (Bret was working overtime at the lake). The picture above was taken Monday evening.

Sometimes the fog lifting coincides with a return of my taste buds and appetite; the results have been frantic food cravings or the realization of how wonderful a particular food can taste. On Monday – it was that food tasted good period. I am unable to recall the exact comment April made but it was a remark about the quantity of food I was eating. Yum…the cookies were very tasty; the roast beef was delicious; the tomatoes were full of flavor; the ranch dressing was wonderful; even the carrots I shredded for the salad were delectable! I’m pretty sure I nibbled and ate my way through the evening.

I am so easily pleased – family, friends and food or sometimes is it food, family and friends? Either way they simply go together for me. Hmmm, maybe I should consider a career change and do something with food. Too bad I could not earn a living cooking for family and friends – oh yes, I need to have a good health benefits package also. I have heard that an employee is eligible for health benefits at Starbucks when working twenty hours a week. I may have to consider Starbucks as my next employer.

Actually, if I found the genie in the bottle and was granted three wishes I would wish for enough money to open my own place - a cozy hangout to enjoy good food, music, friends and family. An extensive coffee selection, homemade soup and killer desserts would be some of the daily menu items. (It could be big enough for the Homeless Collaborative to meet there – I really miss brainstorming and working with all of you.)

Then I would wish for enough money to go on two cruises a year – “enough money” means enough to pay for Randy and I and also our cruising buddies because it would not be as much fun without them. Oh yeah, and air fare to get to the departure point, cabins with balconies, and of course we would only cruise with Holland America.

For my third wish – well I think I need to do some serious thinking about that one before I decide what it would be.

I could wish for world peace; wouldn’t it be great to watch the evening news and it only contained stories of people all over the world who acted upon God’s greatest commandments – Matthew 22:37-39?

Or I could wish for the cure for cancer – wait, make that a vaccination for cancer so that it is only a past icky thing suffered like polio or small pox.

I could wish that every person would truly know their value and would have the opportunity to live a full life and contribute greatly to their community. Ah, if the genie allowed run on sentences/wishes I bet I could work this one into the world peace wish.

According to 1 Kings God gave Solomon wisdom, great discernment and breadth of heart “like the sand that is on the seashore". I’d probably better read his look back at life (Ecclesiastes) several more times before I decide what the third wish should be. And then I might admit that I really should change wishes one and two also. I think I’ll get something to eat and do some reading….. What would your three wishes be?

Cycle # 5: Days 1 - 3

I must have had a lot of steriods leftover in my system on Thursday, day one, because I had insomina but I felt great and had tons of energy; I enjoyed the day.

Yesterday I woke up with a headache that did not go away until about midnight last night. Tylenol, Vicodin, and Ibuprofin throughout the day eased the pain but did not take it away nor the upper body aches that started later in the morning. It was an icky day.

Fortunately the headache is still gone this morning. The upper body aches are now joined by lower body aches. I don't like this but I think it is better than having a headache that will not go away.

Maybe I will get lucky and this will be the last icky day of this cycle.

I am on the other side of this finally - I only have three more infusions to go. I can do this.

Thanks for checking in on me, I will write more later.

Infusion # 5: Brief Update

The infusion was long but a breeze; I had no allergic reactions. So far the only side effects were numerous and intense hot flashes that woke me last night about every hour and at about 4:30 am I woke with severe heart burn; these side effects were the result of the large dose of Decadron.

My blood pressure and pulse was monitored throughout the three hour infusion of Taxol. After the Taxol infusion Herceptin was started; the first infusion is considered a pre-load and it took 90 minutes. Before and during both of the infusions I was given anti-nausea and other preventive meds.

I slept off and on throughout the day and even ate a chicken salad that Randy got for me. By 3:00 pm we were on our way home. I took a nap and Randy watched over me; needless to say we are both ready to call it an evening. So I will say Good Night for now.

Getting Ready for Cycle #5

It is the night before chemo infusion # 5 and I am getting myself mentally and physically prepared for tomorrow. Sometimes it is a bit of a struggle to get myself mentally prepared – this is one of those times.

Tomorrow I start two new drugs, Taxol and Herceptin, and because I do not know what side effects, if any, I will experience I am afraid. The infusion time will be about five hours – approximately twice as much time as it took with A + C. From what I have been told I will be given a little Taxol and then will be observed for side effects. If there are no side effects I will be given more and if there are side effects well according to what I have read, “Most side effects are reversible” – that’s kind of; sort of; ah no, not really very comforting at this moment.

Don’t worry; I always go into this fear, worry, protesting, and panic stage the night before. Before the night is over I will have given all this icky stuff to God and be in a comfortable, positive, and peaceful state.

Tonight I am pre-medicating; at 6:00 pm I took 20 mg of Decadron and at 11:00 pm I will take another 20 mg. Decadron is a steroid that is given to reduce swelling it also decreases the body’s immune response. Following the A + C infusions I have taken Decadron twice a day for two to three days to combat the nausea and vomiting. The side effects include nausea, vomiting, and stomach ache (I know, it does not make sense that the side effects can be exactly what is given to combat), acne, increased hair growth, increased roundness of the face, and behavioral changes…whew, I think that is enough reading about the side effects at this point!

Ok, next on the list is Taxol; side effects include hair loss (hmm, I was told my hair would start growing back when I finished the A + C infusions), numbness of fingers and toes, decrease in white blood cells, nausea and vomiting, headaches, mouth sores, aching or pain in joints and muscles, diarrhea, and skin rash; that’s quite a list. There have been severe allergic reactions to Taxol the Decadron is given to prevent an allergic reaction. According to the literature the allergic reactions most commonly occur within ten minutes of being given the medication. Also, it will cause sensitivity to sunlight so sunglasses and sun block must be worn when outside.

Here is some scientific information – Taxol is a plant alkaloid; a taxane. Various websites explain it to be an antimicrotubule agent, an antineoplastic medication, and a mitotic inhibitor. This means that it communicates to the cancer cells to slow the growth and to stop the duplication of them resulting in cell death.

Prior to 1995 it took an average of six 100-year old Pacific Yew trees to treat one cancer patient! Thankfully, great scientists discovered the way to chemically modify the needles and twigs of the European Yew tree and hocus, pocus it works. The first website did not explain that the new formula was found – I’m glad that I kept researching; now I won’t feel bad about six trees being chopped down for me!

Ok, that’s enough for tonight. It is now 11:30 pm and I have taken the second dose of Decadron along with a brownie and glass of milk. If you have been reading this blog from the beginning you know that I’ve got to turn the tough stuff into something positive! The brownie and milk tasted delicious and were just the right kind of “positive” to go along with the meds.

Even though you are not here with me listening, in a sense I am telling all of this to you. Talking with Randy and April and telling this also to you helps me to “get my head around it”. I will have a final talk tonight with God and give the remaining icky stuff to him. By tomorrow I and my “good cells” will be ready to work with Taxol and Herceptin to get the job done.

As always; I am humbled that you give up some of your precious time to check in on me and grateful for your caring thoughts and prayers.

I will keep you posted.