Pain ... Pain

I had the most excruciating pain in my right hip this morning! I don't know how I managed to get dressed but couldn't lift my leg to get into my car so I don't know how I thought I would be able to function at work.

It's been many, many years still I've had pain like that. At first I thought it was pain in my bone but I finally figured out that it was probably muscular because it would hurt even more when I moved a certain way. I could not sit properly or lay down. I took Aleve and used a hot water bottle but it wasn't till 2 pm when I had some relief.

I actually felt better moving around and I would walk around the house whenever I was awake. I kept falling asleep -- it was probably a reaction to the Aleve and the pain.

I am pretty sure that this is more than likely a side effect of one of the many drugs I've had to take.

Merry Christmas!

I had a lovely, lovely Christmas with the family. David stopped in just after noon to spend the rest of Christmas day with us and it was really nice.

We stuffed ourselves on pizza rolls, cranberry meatballs and cheese log, and when dinner rolled around we could barely eat the prime rib, macaroni and cheese, french beans, rolls! It served us right.

It wasn't long before we were all crashed in the den on our various electronic devices and I was downloading photos, and exchanging funny chats with Sarah and laughing hysterically. I had a great time!

I know this disease has given me a different perspective on what is important in life and I am deeply grateful for all the special times I get to celebrate, and all the rest of the days that I get to live.

The anniversary of my diagnosis is coming up and I am trying not to let that bother me. I have faith ...

Blood Pressure Medication Changed

I managed to get an appointment to see my GP today. The appointment was for 11 but didn't actually get to see her until 12:30 -- there were moments when thoughts of murder did occur! Anyway, she has switched my blood pressure medication to one without the diuretic, so we shall see how the potassium does with this new pill.

I never was so glad to get out of there because I was starving! I had been on the elliptical that morning and had only had water because I wasn't sure whether she was going to be doing bloodwork -- never can tell. I was ready to eat a horse by the time she was done with me!

Damn Potassium

Today was my last Herceptin infusion for the year and had to stay an extra 2 hours for a potassium infusion -- yes, the pesky thing has dropped to 2.9! How is that possible? I have been on potassium pills and am eating potassium rich foods.

The oncologist's nurse, Diane, came to speak with me, and it's clear that they think that it is the HCT in my blood pressure medication that is interacting with the Herceptin to produce the low potassium levels. I'm going to have to make an appointment with the GP before my Jan. 6 Herceptin infusion so she can switch my blood pressure pills.

Well ... this is nothing new ... my "new" life is about adjusting and more adjusting ...

Last RO Visit for the Year

It seems hard to believe that I won't have any more doctors' visits this year that are associated with this crappy disease! Had my follow-up visit with Dr. Trivette today ... all is well ... skin is healing beautifully. The only signs that I ever went through radiation are two tanned areas -- my lymph node area and the site of the boosts. Eventually they will fade.

I won't see Dr. Trivette again until July of next year!

Fourth EKG

Yes ... it was that time again today ... to make sure that my old ticker is not being damaged by Herceptin. Went to St. Mary's at 3:00 pm to get my EKG done. If something is wrong I am sure that I will be hearing from Dr. Schaffer's office because she told me in the beginning that if there is any damage at all, she will stop the Herceptin right away.

I haven't noticed anything to give me alarm. Sometimes I feel as if I can't quite catch my breath but that has not impacted my quality of life. I work fulltime, I exercise, cook and clean, so I doubt if this is anything. Considering what my body has gone through this year I am surprised it has not crashed in despair.

I've survived the horrors of this year by keeping my life as normal as possible. After the EKG we went shopping for clothes for the Angel Tree. I picked an 11-month-old boy -- again more clothes for girls than boys!

John took me out to dinner and then to Trader Joe's where I found roti paratha, channa masala and stollen! No December is complete for me if I do not have my marzipan stollen ... it's the little things that make me happy.

We also bought a gingerbread house for Sarah and David to decorate. I am really looking forward to Christmas. I am deeply grateful for every day that I am alive, and so incredibly sad for all the women all over the world who encounter this disease. Dear Lord, let there be a cure for this crappy disease in my lifetime.

Plummeting Potassium

Yes, here we go again. Went for another Herceptin infusion on Moday and had bloodwork done at the same time ... my potassium has fallen from 3.7 to a miserable 3.0! I am back on those potassium pills again but somebody has to figure out what is causing this. Is it the Herceptin or the Arimidex or a combination of all three?

Surely I can't be the only person in the oncologist's practice that has this problem?

My hemoglobin level has also gone down. Really?

Back to my potassium rich diet.

Of Arimidex and Nightmares

On the first night that I took my Arimidex pill I had a gruesome nightmare and the night after that and the night after that, for a whole week. I knew that the two had to be connected because I'm not one for nightmares ... mine are usually about things I have to figure out ... not ones that scare the living daylights out of me.

I also noticed that I was having difficulty falling asleep and this is not something I have any problem doing ... once I fall into that comfy bed ... it doesn't take me long to fall fast asleep. I poked around on the discussion boards for a little bit and decided to switch my pill taking time from an hour before bedtime to just before I headed upstairs to bed. It worked! Didn't have any problems with falling asleep after that.

I've been on Arimidex for over six weeks now and so far I've not had any hot flushes or night sweats. There's a little stiffness in the right knee if I sit still, so I try to move around as much as possible.

Also figured out the connection of Arimidex to nightmares. I was at my one of my infusions and the oncologist's nurse stopped by to see  how I was doing on Arimidex and I mentioned the nightmares. She said that another patient had a similar experience and she went away to check on it and came back with an explanation ... patients who take thyroid medication and Arimidex have reported having nightmares. Explanation at last! The nightmares have lessened and my hope is that they will eventually all disappear.

Radiation Burns Are Healing

It's been two weeks since my radiation treatments stopped. The terrible burn under my arm has healed completely without blistering. One wouldn't have been able to tell that a mere two weeks before the skin was charred.

The red caused by the boosts have changed to a darker brown and the skin no longer hurts. Some of it has started to peel off.

In a few weeks there will be no evidence that I ever went through this.

Menopause Here I Come

Perhaps the subject line is not technically true but who knows anymore? All I know is that I never went through any of the symptoms of menopause. Now I will get to find out when I start taking Arimidex: http://www.arimidex.com/ tomorrow.

Dr. Schaffer gave me a reprieve of two weeks after finishing radiation to start taking this estrogen suppressant pill. I've browsed the Arimidex discussion board ... doing my usual to prepare myself. I've decided I'm up to the challenge ... I can do this. The thing to do to combat a lot of the side effects is to keep exercising. This shouldn't be a problem since I do this almost everyday anyway. I do have to add weight bearing exercises so I am slowly adding yoga back into my regimen and hope to do at least two days a week of yoga. Last week I started working with hand weights again.

There was discussion on the boards about the body's production of estrogen. That after menopause the ovaries stop producing estrogen, making the main sources of estrogen the adrenal glands, breasts and fatty tissues which use the enzyme aromatase to produce estrogen. I suppose I will have to see about reducing fat from my body ... sigh ... sigh.

I will do my part and the rest is up to God. I will give this hormone therapy at least six months and if my body hasn't adjusted, I will stop it. I do not intend to spend five years of my life in misery.

Creeping Potassium

Finally, my potassium level has crept up to the lowest end of normal -- 3.5! This is the first time it has been in the normal zone since July 28. It has taken almost three months after the last TCH infusion to reach this point.

The Herceptin infusion went well today. The nurse I've nicknamed Gentle Anne got the needle in on the first try and she remembered to flush the port once the infusion was done so all is good in my world.

No More Radiation!

I had my last treatment today! Was on cloud 9 most of the day and couldn't wait till 2.30 so I could leave for St. Mary's. Got my treatment, did my exit survey, said good bye to the lovely radiation therapists, met with the RO, fixed a date for my visit in 8 weeks, and then I went home!

Hubby and daughter took me out to dinner and now I am in my soft old flannels, drinking hot chocolate and I have a book I am going to enjoy right after I finish this posting. Not going to think about anything else tonight.

Doing happy dance in my head!

Eve of the End of Rads

I an sitting here quietly savoring the thought that tomorrow another big treatment for this crappy disease will come to an end. And I have survived!

I had my moments when I thought I could not possibly do another day of radiation but that time is fast becoming a distant memory. My poor charred skin has disappeared and in its place is beautiful unblemished new skin. That constant sore and tight feeling has gone. It really does feel like I am on the verge of a new day and I am! I am!

I got back on that elliptical again today and told myself that I would do only fifteen minutes and before I knew it I had done 30 minutes. Last week the very thought of moving my arms would have made me sick.

I am looking forward to tomorrow ...

Healing

I have been feeling good this weekend. The old burnt skin has been gradually peeling away to reveal smooth unblemished new skin. I am healing! I am healing! It's been coming off in the daily process of bathing, oiling with emu oil, rubbing off from clothing, etc. I have not been picking.

I have three more boosts to go, and so I am taking this as a good sign. Now I know for sure that there will be no blistering and all the awful things that brings. Something else I've noticed ... the scar from my lumpectomy has disappeared! Everyone has always had a hard time finding it -- it's pretty funny when the doctor looks at my breast and has to ask "Can anyone see where the scar is? I can't find it!" and everyone starts looking. I always could tell -- there was a faint outline but now I can't! I don't know if it is really the emu oil but I am now religiously putting it on the surgery scar from the port insertion ... maybe it will do it's magic here too. The scar from the lymph node removal has also disappeared. It's harder to tell with this one whether it was burnt off by radiation or healed by emu oil. I am just grateful not to be carrying the reminders of this terrible disease.

It will be so good on Wednesday to mark off the end of another part of this journey ... one more leg of this journey will be done ... done ... done!

The Boosts Have Started

After 31 radiation treatments

Normal skin

Thank goodness the whole breast radiation stopped last Wednesday. I don't think my skin could have survived another treatment. The area directly under my armpit is burnt black and is constantly sore and painful to the touch. Putting emu oil on it is agonizing. Any movement is painful and feels as if my skin is going to split wide open. I did not have a good week but at least I did not develop blisters which could have burst and gotten infected. In everything there is something to be thankful for.

Sometimes it is hard. After the Thursday and Friday boosts to the tumor and the scar area, there was such pain in the area that I wondered, "Can I do ten days of this?"

The pain has gone and the area under my arm, while it is still black, it is not as painful as it was last week. It does seem that when I have just about reached the end of my rope, I get a little relief -- enough to rally my spirit.

And so the answer is, yes, I can do this.

Low Potassium

Yesterday was a full day for me ... visit to the GP in the morning, then radiation and finally my Herceptin infusion. Everything went well until the end when the nurse pulled out the needle before she had flushed the port! That meant that she had to reinsert the needle and flush the port ... so I got stuck twice. She was mortified but I was not upset ... she got the needle in both times and didn't hurt me.

What I was more upset about was my low potassium levels. The bloody thing fell to 3.0 from the miserable 3.1 three weeks ago. I really don't understand this ... I am taking the pills and I am eating a potassium rich diet. I don't know what else to do. My potassium level has been low since my last TCH on July 28.

I will have to do some research into this and figure out why this is happening. This is not cool at all. They've doubled the dosage that I am supposed to take and I started today, so we shall see.

Cleaning Stuff

Even though I know it makes no sense, I did for one brief moment after diagnosis, wonder if I could have prevented my cancer. I know that no one  has an answer ... I exercised, I watched what I ate, I stayed out of the sun ... and in the end what did it really matter? Mine was of course, did I clean too much? Did the chemicals I used cause my cancer? Did it kill my cat? I remember how crazy she would get while I was cleaning!

I cannot give my cancer away nor can I bring Cloudy back, but I can change the way I clean, and I have. All the chemicals have been thrown out. Now all I use are things I have in my pantry. I went out to the Dollar Store and bought one of those spray bottles and put equal parts of water and vinegar in it and that is what I use to clean the bathrooms and the kitchen.

For scrubbing the shower stall, I use baking soda. We went out and got a big bag of baking soda from Sam's Club (5 lb or something like that) and now what I do is make sure the shower stall is wet, then I sprinkle baking soda (the more pastelike it is, the better), leave it for an hour or so and then scrub. Everyone who knows me knows how finicky I am about my clean toilets, and these products are good enough for me.

Sometime next summer when my herb garden is up and about again, I am going to experiment with adding fresh herbs to the vinegar cleaner and see if it makes a difference with the scent.

I am still looking for a good natural cleaner for my wood floors.

Preparation for Boosts

Yesterday after my 20th treatment, I had to be marked for my boosts which should start week after next. The technician put clear tape over the markings so they wouldn't rub off ... needed to have them in place until today for the radiation therapists to take x-rays.

Long story short ... when I took off the tape today ... for one horrifying moment I thought I had ripped my skin off! It was painful and the tape had left a film of glue that was lifting up and it looked like peeling skin! Thankfully, it wasn't but I am allergic to whatever that tape was because I have neat little bumps that are itching like the devil. I have worked emu oil into my skin and am keeping my fingers crossed that the "miracle" oil will fix everything.

I have not forgotten that today is my 21st treatment!

Midpoint

Yesterday's radiation treatment was the 17th, so I only have 18 more to go ... that's almost midpoint and everything else from now on will be a count down to the end!

I'm still doing fairly well. There is some reddening of the skin and there is no doubt as to the area of radiation. The skin discoloration makes that very clear! I'm slathering on that emu oil and hopefully that will be enough. Every now and then the skin itches like crazy usually at the most awkward moments ... almost always in public when I can do nothing about it. Anyway I am trying not to scratch  ... don't want to break any skin. Lord knows what would happen! Probably some massive infection that will kill me or something.

Recently I've noticed that every time I sweat I also start itching all over ... makes exercising rather trying. I wonder whether that is the radiation? I also have some changes in taste again ... this time the exact opposite of when I had chemo. I can't tolerate salty & vinegary but can taste sweet.

When will my life get back to normal? I often wonder whether there is ever going to be a normal for me. I suspect that for me there is no such thing anymore.

12th Radiation Treatment

Had my 12th treatment yesterday so I ONLY have 23 more to go! It doesn't seem quite so long when I think of it that way. And so far so good. I had my weekly meeting with Dr. Trivette on Wednesday and he said he could see some redness already and to keep moisturizing. I hope to goodness that emu oil works!

The skin discoloration has allowed me to see the area that is radiated. It goes higher up under my arm than I had anticipated but that makes sense because it needs to get the area of the lymph nodes. And that is the area that has some swelling and irritation but it is not unbearable ... I just slapped on more emu oil!

My reward to myself to mark the end of this week was to go to the movies to see The Help with John and Sarah. I loved the movie ... it made me laugh so hard I couldn't breathe (quite scary); made me cry, and saddened me as well.

Now I'm off to do something I can't put off any more (not if I want to be able to go clothes shopping) ... weeding my closet! Perhaps there is some element of the hoarder in me because I find it very hard to throw anything out. It's got to be done ... off I go ... going now ... really.

First Triple Dose Herceptin

It was a little strange yesterday to be back at the infusion center after being gone for three weeks. It was my first triple dose Herceptin session, and I wish I could say that all went well.

When we got there we found that the whole session would take two hours instead of the thirty minutes that we had been told, which would have made me late for my radiation. So the nurse had to call the radiation center, give me part of my pre-meds and then we had to dash over to radiation. Thank goodness they could fit me in. I was able to get my 8th radiation!

From the start I should have known that the rest would just go downhill ... the nurse couldn't get the needle into my port and must have hit a nerve because pain just exploded under my arm. That had never happened before, so I knew at once that the needle was not in.

We decided to just get the infusion through my arm and I decided that I don't like it because it leaves me with only one free arm. Having the infusion through the port leaves both hands free to hold my book ... eat my snack, etc. On September 23 when I come for the next Herceptin infusion, they will have to access my port because it will need to be flushed, so they have no choice. I'd better pray for one of my regular nurses! This one nurse I had not had before.

We were way behind in my dinner schedule so I was glad that I had put that pot roast in the crockpot, and just had to worry about the sides. Sarah and David were coming to dinner and I had hoped to make the rolls for them but there was just no time. Everything turned out well, so all was well in my world by then. I don't expect to have any side effects with this Herceptin infusion.

Hurricane Irene and Radiation Treatments

I don't know what it is with natural disasters! While we came out of Hurricane Irene's visit relatively unscathed, our lovely Vermont is reeling from the devastation of the floods that the wicked witch brought.

I was able to have my 5th radiation treatment on Monday. The machine was up and running although the therapists were backed up. I was forty-five minutes late getting my treatment and I was a little annoyed because I had already planned an outing to Party City with Sarah to pick up supplies for her birthday party. I hate being thrown off my schedule.

We got most of what we were looking for and I cooked a lobster dinner and was able to enjoy that. I'm noticing some odd shifts in my taste again. I have to keep an eye on this!

I also exercised like a maniac and was able to stay on the elliptical for 40 minutes but my hips complained about it the next day.

On Tuesday I had a regular visit with my oncologist Dr. Schaffer. Everything is looking good but my potassium level is still too low at 3.2. It needs to go up to 3.5. I've been taking my potassium pills every other day, I guess now I have to be sure to take them everyday. I also told Dr. Schaffer that I had ordered emu oil. She laughed and told me that I had to check with Dr. Trivette. Yes, yes, I went ahead and ordered it because it seems like it is a multi-purpose oil that will do anything from relieving joint pain, keeping your skin soft to growing hair!

I figured if Dr. Trivette nixed the skin lotioning part of it, I could still use the emu oil to grow hair, fill in the rest of my eyebrows and that one little clump of missing eye lash. But he did not pooh pooh the idea when I saw him on Wednesday. He said that I could go ahead and use it and if it works he will recommend it for the rest of his patients.

I did not get my 7th radiation treatment because the machine was broken and so what will happen is that I will get an extra treatment tagged onto the end. I am now scheduled to finish on Oct. 12 instead of Oct. 11. I can live with that.

Earthquake and First Day of Radiation

I will not take it personally God that on the first day of my radiation treatment, Virginia suffers an earthquake, the magnitude of which has not been seen here since 1879! For most of us who have never felt the tremors of an earthquake ... we had no idea what the rumbling sound and then the earth shaking meant! Thankfully the only thing that tipped over in the library was one of the plastic display stands.

And thankfully too that my radiation treatment went well ... it was short and sweet and I was home by 4 pm. I guess they can't do it any longer or they will fry me. I like my two radiation therapists -- Tanya and Kelly.

As soon as I got home, I exercised, showered and then used my Eucerin lotion on the breast. I've been looking through the radiation therapy forum on breastcancer.org and quite a few of the women are recommending emu oil. Not so sure how I feel about putting animal fat on my body. I'll have to think about this one and explore it a little more.

A Week of Freedom

What does one do with a week that doesn't involve infusions or doctor's visits? I went to the green mountains of Vermont! As soon as I was done with my infusion on Thursday, Aug. 11th, which also happened to be the last of the 18th infusions, we hightailed it out of there and took off.

I slept most of the way to New Jersey because that Benadryl still knocks me for a loop. In this case, it wasn't a bad thing ... nothing really to see on the drive but highways. We got to South Plainfield, NJ, just in time for dinner. I have most of my taste back so we decided to try Joe's Crabshack. I haven't eaten much of any seafood during chemotherapy and I've had a craving for crab for a while ... decided to indulge it. And boy, was it good! It wasn't fresh off the fishing boats good but it was good enough for the moment. I had the classic steampot with two kinds of crab, shrimp, potatoes and corn, and I am not ashamed to say I ate it all!

It really was a special day -- the end of this first 18 weeks of chemo and my first vacation in four and half months, and to mark it, my lovely husband gave me a necklace with champagne diamonds. It had three circles to represent our little family. The sneaky guy had the gift and card in the glove compartment and as we got in, he handed me something to put away and when I opened the compartment, there was the pink gift bag -- devious fellow!

On Friday we took our time heading to Vermont and got to our condo just after 4 pm because we stopped at the Price Chopper to pick up some food supplies. It was good to see the gently rolling mountains of Vermont and all that restful green. Our first meal in our condo was something easy -- spaghetti ... it was perfect.

I don't know what my obsession is about picking blackberries but I couldn't wait to pick them on Saturday and we made it to our property in Derby just after 10 am. The neighbor was out minding her yard sale, so had to chat with her, and of course the two dogs came over and wanted to be petted. I am an animal magnet ... Tanner wasn't content to be scratched, he decided he wanted to lean against my legs. And then Devon came over and tried to head butt Tanner away so he could get to my hand.

We did get to pick blackberries for about an hour and a half and that was about all I could take. I could feel sweat dripping down my back. I wish I could have just worn a scarf around my head but I am not brave enough ... actually if I was totally honest ... I am brave enough ... it's the questions I don't like.

Anyway, I started my blackberry jam in the crockpot as soon as we got back to the condo, and I prepared about four cups of blackberries for a cobbler to take to the neighbor's that evening for dessert. They had invited us for a steak dinner ... don't know what that man does to those steaks but they are delicious!

I had an absolutely lovely time in Vermont ... read a lot ... looked at the green mountains and fields from our deck ... took a trip out to the Von Trapp Family Lodge for lunch ... shopped a little and relaxed a lot.

It was so good not to have to think about an infusion coming up or taste buds gone haywire! My body and soul had a good time.

Tattooed!

I have survived half a century without being inked but alas I cannot say that now. I had my radiation simulation yesterday where they chart and then mark the area that is going to be radiated.

All right, I am just being a drama queen. It really is not that bad. I was expectiong to be marked with black ink all over but it really is only four marks -- a tiny ink dot that was injected into my skin near the middle of my chest; a longer mark also injected into my skin on the outer side of my breast; and marks on the top and bottom of my breast (these were drawn on and not injected). I really can't complain. I do not look like that LA Ink tart.

It was funny as I was buttoning up my shirt I looked down and saw the first mark and then automatically thought, "I have to brush that dirt off" and then realized that it was my "tattoo". I will get used to it.

What I was not too happy about was being told that I could not pick my radiation times but would have to work with what they gave me. And what am I supposed to do about working? Bloody idiots!

17th Infusion

Yes, yes, yes ... had my next to last infusion on Thursday. My absolute neuts were 5.1, so we know that the neulasta shot did what it was supposed to ... yay!


It's taken me longer to bounce back this time ... my energy level is not where I think it should be but I am not going to push myself. I started using the elliptical again on Saturday for only 10 minutes and shopping with John at Shoe Carnival and later popping over into Marshall's was exhausting.

Today I managed to do 15 minutes on the elliptical but I also put away all my laundry, cleaned the downstairs bathroom, made dinner and washed dishes, and that was enough for the day!

John has brought in the suitcases so I will use the next few days to pack for our trip to Vermont. I am really looking forward to being out of this house and having a change of scenery. I promise to be good to myself and relax as much as possible.

Aftereffects of Neulasta

I had my usual overwhelming fatigue on Saturday and Sunday and could do very little but sleep. I always have some degree of change in taste but this time seems worst. Nothing tastes good. Anything that is remotely sweet tastes gross ... I just want to rip out my tongue.

I had to scrounge around in the pantry to look for anything that might taste good. Since even Chinese food is not doing it for me, I thought I would try curry. I found a packet of Malaysian curry, so I boiled some potatoes and chopped up some leftover beef, and had myself some curry. I tasted some and it was edible but the funny thing is I could not taste any of the heat or spice. I'm not a fan of packet curries and curries not made by my Mum -- she was the only one who could make curry that was not too spicy for us. I am desperate here!

I've survived so far but have lost about five pounds ... it will all come back eventually.

I've had some of the pain from the Neulasta shot that I was warned about -- stomach, sternum, ribcage, hips, shoulder, but none of it has required medication. However, today I developed some pretty bad back pain and had to take Tylenol for it and then passed out on the couch.

This too shall pass ...

Cleaning Service for People With Cancer

I have been meaning to post this for a while but keep forgetting. Thank you to my friend Kristin for forwarding this link to me. It's a free monthly cleaning service which will clean the homes of folks who are going through chemotherapy. Sounds like the process is fairly easy ... you sign up ... get your doctor to mail a letter to them and they come to your house.

I have not used them since I have been well enough to work and keep up with my usual housework. I would feel like a terrible fraud for asking for help when I really didn't need any. I am sure that there will be folks out there who will need them far more than me.

Here is the link: http://www.cleaningforareason.org/ Please pass this along to a friend who is going through this terrible treatment ... he or she will be grateful. I've also got this posted in the right sidebar under Cancer Websites.

Last Big Witch Chemo!

I was up at 4 am ... the Decadron has given me insomnia again but I am not complaining .. this will be the last time I have to take it! A new day dawns ... this is my 6th and final TCH infusion.

I made the nurses weepy with the note I attached to the cake. I told them that I wrote from my heart and that I meant every word.

Everything went well today ... I couldn't have asked for a better infusion. The results of the bloodwork came back quickly ... my absolute neuts were 5.1 -- exactly where the infectious diseases doctor wanted them to be before he would release me. My body did the work all on its own with a little help from Decadron and with no Neulasta shots!

The pharmacy was really quick too which is unusual. It was as if God was smiling down at me. I took the gift and said "thank you".
You know that saying about not looking a gift horse in the mouth? Today I was grateful for the smooth infusion. There were little bumps -- my potassium was a little low so Dr. Schaffer's nurse practitioner, Dianne, ordered some pills; I got itching palms from the Carboplatin but Becky slowed down the drip and the problem corrected itself. These were tiny, tiny little things in my wonderful big day today.

 I came home with those red, white and green balloons ... don't ask me why those colors but I was happy to take them and celebrate.

However, I will be back at the infusion center tomorrow at 3:45 for my Neulasta shot. It has to be given 24 hours after the TCH infusion. I decided to go with Dr. Schaffer's recommendation because I do not want to end up in the hospital again.

Thank You to Wonderful Nurses!

To All You Wonderful People,

Today is my last TCH and I wanted to thank all of you for helping me through this. When I first started I could not see the end and was not sure what to expect … but here I am today celebrating my last “big” chemo!

Your compassion, kindness and incredible patience make a world of difference to people who are going through some of the worst times of their lives.

No matter where I go on my journey, you have all become part of my life … I will always remember you and thank God that you all exist in this profession that you have chosen.

A very special thank you to Maria who restored my faith in nurses and gave me the first glimmer of hope that I could do this. And many, many thanks to Elaine and Mary who came to my rescue when I needed them most.

This truly is a heartfelt thank you to the wonderful nurses, staff and volunteers of the infusion center … I will never forget you!

Sincerely,

Be Good to Yourself

Rose Gold and Pink Radiance

I've said this before but I will remind myself again ... be good to yourself ... reward yourself every week with something. It doesn't have to be something "big" or expensive. It could be something as simple and meaningful as snuggling on the couch and watching a movie and eating popcorn with the people you love. If you have been craving a Japanese bento box -- go for lunch after your infusion; eat that ice cream bar covered in decadent chocolate ... life is too short.

When I was in the hospital last week trying to figure out a way from going crazy, John brought me my computer and there in my email was a notification from Avon reminding me that it was my 2nd anniversary of buying online and offering me free shipping. That was worth exploring. I've had Avon's Viva Pink on my toenails since I was first diagnosed. I poked around to see if there were any other colors that might catch my fancy -- two actually -- Rose Gold and Pink Radiance.

It was a particularly trying week so I added a couple of things -- two creams, a mascara and some hand lotion. They all arrived today ... the day before my last Big Witch chemo!

Today I also got to meet with Dr. Schaffer so she could clear me for my infusion tomorrow. I found out that she is recommending a Neulasta shot tomorrow to boost my White Blood Count after TCH. That's the shot that's given in the stomach and causes bone and muscle pain in some women. Apparently these women weep for days. I am not most women so I am going to give it a try and pray very hard that I will be fine.

Fingers Crossed

My student worker just called in sick! This morning I did my usual sanitizing of my work computer and surrounding area but I know that you can't get every bit of germ/bacteria/virus that is hanging around. But I did another round after her phone call. You just do it with a prayer in your heart that you won't catch anything.

I have been using Eileen's computer which is in itself not an ideal situation but it does get me away from the reference desk and another layer of protection from the crowd.

And I hope to goodness that whatever Chris has, I will not catch. My last TCH is this Thursday and I cannot afford to miss it because if I do, it will push all my other plans out of sync.

Fingers crossed ... dear God ... don't let me catch anything!

Cloudy Comes Home

It feels good to have Cloudy home again. John picked up her ashes today. With that came her certificate of cremation and a clay disc with her paw print on it. I had to bake it in the oven to harden it. Didn't want it sitting around to get smashed or flattened.

We will bury her ashes in the backyard but not just yet. I want to fix up the backyard once I am well and then we will pick the perfect spot for her. There is no hurry ... everything will have to be just right for our little kitty paw.

I have been missing her so very much, and I am glad she is home ... it feels right.

A Clean Mammogram Maybe

Fairly good news this morning .... the mammogram of my right breast showed that there is what Dr. de Paredes is calling "almost certainly" a benign area and recommends a six-month follow up with an MRI and mammograms. She told me all was good so I am taking her at her word and trusting in her judgment and I am walking on faith.

Dr. Trivette ordered the mammogram in preparation for the radiation which will start on August 22. If there had been another tumor, it would have had to be removed before radiation could be done. That's because you can only radiate an area once.

I got to meet with Dr. de Paredes and to thank her for saving my life because I really believe that her skill saved me. How do you spot a tumor that small and know it for what it is? That's skill.

I will come back in six months for my bilateral mammograms and if everything goes well, it will go back to just once a year. My life will go back to its normal pattern. At least that is what I hope. However, I think that nothing will ever be normal again.

We Are OK, God

I've been mad at God ever since Cloudy died. I asked him not to let anything happen to her but he didn't save her, and I got really, really angry. I did not want my cat to die, I did not want to never being able to see her again and play with her. I could not imagine not having her perch on the corner of the sink, watching me as I cleaned and chopped celery; or Cloudy coming down just as I am taking chicken out of the oven and walking over to her food bowl to wait for her shredded chicken. I wanted my life to remain the same.

I know it's not God's fault. She was too sick to be saved and it would have been cruel to prolong her life when the end was inevitable. I wanted her to live to make me feel better ... I didn't want to lose her this year ... making it an even crappier year.

God and I have been together since I first learnt to pray and to understand about faith. He let me have my little snit because he knew that I would come to my senses sooner rather than later. I could not survive without my faith.

When I was in the hospital this week I started to pray again. Not so much -- "let me be well again" but it was more -- "thy will be done." I know he has already cured me ... I have no doubt about that. I have been praying for everyone else -- so much in the world that needs to be fixed.

God and I are OK again and life is as it should be.

The Knockout Punch

For the first time in 14 weeks this chemotherapy has knocked me for a loop. On Sunday I had been feeling tired for most of the day but I thought it was because I had overdone it yesterday with helping Sarah move. However, at about 6 pm, I started feeling a little chilled and not quite myself, so I went upstairs to take my temperature and to my horror it was 100.9!

I couldn't believe it and got my glasses but it still said 100.9. I knew that was not good because whenever I'm in neutropenia the nurses hand me an information sheet and one of the items on it is about taking your temperature everyday and if you get a temperature of 100.3, you have to call your oncologist. I waited about 10 minutes and it was still the same -- 100.9. I started to get anxious ... I did not want to go to the hospital! I wait another 15 minutes and then I take my temperature again and it has gone up to 101.3!

I am so mad that I am almost in tears but I know what I had to do. I put a call in to my oncologist office and get the answering service. While waiting for someone to call me back I back my overnight bag, and sure enough the doctor who is covering for my oncologist sends me to St. Mary's emergency room.

You hear all these horror stories of people waiting for hours in the emergency room but I was seen in less than five minutes. My white blood count had gone down to 0 and there was no way I was leaving that place. It isn't till midnight that I get to a room on the oncology floor. John goes home and I finally go to sleep at 2 am ... not that I get to sleep much. I wake up on the hour to go to the bathroom because of the IV drip they've got me on. By just after 5 am, I give up on sleep and get ready for the day.

I see all kinds of doctors who pop into my room but I don't see Dr. Schaffer and I learn later that she is on vacation. I still have a low grade fever but it's down to 99. I'm now on antibiotics and that infernal drip.

My fever is gone by Tuesday and my white blood counts are up but it is not where it is supposed to be and I wasn't getting out of there until my WBC reaches 5,000. I know my WBC would never reach that on its own and I will not take those shots.

When I think I couldn't possibly take it anymore, the hospitalist contacts Dr. Schaffer's office and I am finally discharged on Wednesday. My absolute neutrophils are 0.8 and while that does not meet normal standards, it's good enough to release me because that is normal for me. I should be able to function quite well at that level with the usual precautions that I usually take.

The needle has been left in so my infusion today went very quickly. We were out of there by 1 pm ... yippee!

I hope that this is the only bump in my chemotherapy journey and that this was my "when it rains, it pours" moment. It was just one of those times when I was in a vulnerable place ... sad from the loss of Cloudy and on a downward spiral from the TCH.

Next week is my last TCH infusion and the week after that is when I have to be so incredibly careful. I don't know if I can do this again.

Moving Sarah

We moved Sarah to her new apartment today. We got there bright and early and headed to the new apartment ... it is in building from the 1920s but it has been updated with wood floors and a newer bathroom, and a kitchen that is just a tab bigger than the previous one (not that Sarah will be doing much cooking).

I didn't know how much I would be able to do but I started mopping the floors ... started with the bathroom, then the bedroom, living room and kitchen. I also managed to wipe down her cabinets and wash her drinking glasses before I sat down on the chair, put my feet up and was done for the day. Thank goodness that David and Blake came over soon after with the bed that they put together, and as soon as that was made, I was on it with a blanket pulled over me ... I was out for a short while.

I think I may have done a little too much because I was exhausted when we came home. I went to bed at 8:30 and didn't wake till 6 this morning.

14th Infusion

I've had a tough, tough week with fatigue and sadness at the loss of Cloudy. I lost 5 lb. put gained one back this morning. I have just been too tired to exercise. But I've kept up my chores and cooking because we had visitors from Tuesday through Thursday. It was good to have people because it feels like I have been confined to this house since I started chemo in April.

There were some issues with accessing my port ... Maria couldn't get it in twice and called for help from Elaine who finally got it in. This was a first for Maria!

My absolute neutrophils have plummeted to 0.2 and I am back to restricted activities. I am that way all the time so this will not mean anything different for me. I have undertaken those precautions since I first found out what I had to do during these times. Diane from Dr. Schaffer's office came over to speak with me about precautions and I had to sign a document saying that they had spoken to me.

I only have four more infusions after this!

Radiation

We met with Dr. George Trivette today and learned about my radiation schedule.  I will start daily radiations on August 22 and those will last for seven weeks. I will go for the simulation on Aug. 8 where they mark the area to be radiated (is there such a word?).

I have no clue what any of this will be like. Sure we watched a video but until you go through it, you will have no idea what to expect. I am not as terrified of this as I was of chemo. I seriously doubt that anything is as terrifying as chemotherapy but we shall see.

We will get through this like we get through everything else ... one day at a time.

Goodbye Cloudy

Cloudy McFurrball Campbell, April 26, 1997 - July 9, 2011

Just when I thought this crappy year could not possibly get any worse ... we had to put Cloudy down today. She had been off her food for a few days and her breathing had been very labored so this morning we took her to the vet. Even when Dr. Woodhouse came back and told us that there was fluid in her lungs and that her white blood count was elevated, I expected there to be something they could do for her. This was our strong feisty cat who had a clean bill of health not more than a month ago. It just did not seem possible that this was the end. But it was and I had to call Sarah to tell her to come to the vet to say goodbye to her best buddy.

And as we waited for Sarah, Cloudy sat on the counter top with her face resting on the back of my hand and my heart kept breaking.

It was so very hard to say goodbye to our Cloudy. I was the first one to hold her when she came into our family and I was the last one to hold her as she left us ... mine was the last voice she heard and the last face she saw.

Goodbye, sweet girl, thank you for the love and the memories.

5th TCH

At last with this one over today, I only have one more TCH infusion on July 28! I really cannot wait and three weeks cannot come fast enough.

I did not get the good nurse Maria but instead I got gentle Anne whom I had a couple of weeks ago. I did not mind, I liked her and she got the needle in on the first try, just like the first time. She got blood from the port too ... yay! Everything went very quickly ... the results of the bloodwork came back very quickly. My absolute neuts are 10.1 which is definitely up from the miserable 0.5 from two weeks ago.

I was done before 2 pm and it was wonderful to have all that time to check on work emails, get dinner going, and then make the filling for the chicken pot pies for tomorrow. My lunch of brown rice is packed for tomorrow so everything is done! Now to update all the blogs.

Insomnia

I've had insomnia for the first time since I started chemotherapy and I am pretty sure it is the Decadron. I took the full prescribed dose yesterday. Before the last TCH I had forgotten my morning dose and took only one dose when I remembered. I never take the dose on the day after TCH and I haven't noticed any effects from doing that.

I did not sleep a wink so at 4 am I got out of bed and started fiddling around in the kitchen. I made my pie crust for Friday's chicken pot pie dinner, and prepared lunch to be taken with me to my chemo session ... some kind of soup and crackers. I figure the more liquid I can put in me, the more liquid will flush out the drugs.

Now I am just waiting for hubby to wake up so I can get on the elliptical and do 20 minutes. I've been able to exercise every single day since Sunday ... I am very pleased with that!

I know I can only do what my body allows me to do but I have made preparations for upping my exercise and changing some eating habits once my last TCH is done on July 28. I have registered on a site called www.fitday.com -- it's free and you can track what you eat, how much you exercise, etc., etc. I have to get rid of this chemo belly ... so many woman struggle with this long after their chemotherapy is done. I will try my very best to beat this!

Big Witch Chemo Tomorrow

My 5th and second to last TCH is tomorrow! Dread and joy at the same time ... I am looking forward to almost being done and dreading the next week and a half. I know I can do it ... just don't want to go through all that. I can hear my grandmother's voice ... " Pull up your boot straps and deal with it!" I hear you, Nanny!

I've been eating soup and fruits for the last few days but today I did something really bad ... I had fish and chips for dinner and it was yummy! I ate all the fish, two hushpuppies and about 8-10 chips, so I didn't feel too bad. Life is short ... eat fish and chips!

I'm coming Big Witch Chemo ... I am coming! I hope my favorite nurse Maria is back from England ... I have missed her.

Company

We had company on Friday for the first time since I started chemotherapy in April. John's parents, sister and niece spent the night before continuing on to New Jersey for the Fourth of July picnic. I made dinner and then breakfast this morning and I did not tire myself out. I am still feeling good.

On Thursday I had my 12th infusion which means that I have only six more to go. I was almost not able to have my infusion because I had not had my EKG which had been scheduled for 8:30 am that day. Guess what? No one had called me to let me know it had been scheduled and no one had called to remind me. I cannot go to something that I do not know about. There was a mad scramble to get me an EKG before 1 pm and somehow they managed to get it done because I was not about to postpone my infusion. Someone was going to die if I had not had that infusion. Here I am doing everything right and some stupid scheduler who does not do her job, jeopardizes my treatment ... blooming idiot!

This was my Herceptin infusion so I didn't have any significant side effects. I'm just trying to drink a lot of fluids to flush the drug out of my system as soon as I can ... I can't stand the smell of it in my urine ... it just reminds me of what is in me.

Next Thursday is my fifth TCH and then I will have only one left. I've got my liquids (soups) purchased for next week. But in the meantime I am going to enjoy the long weekend!

Her-2 by Robert Bazell

I'd ordered this book because I had seen the movie Living Proof which had been based on the book, and I was just curious. I must say that I have thoroughly enjoyed this book. Bazell's got an easy writing style ... it's difficult to write about all that medical stuff and terms without putting people to sleep, but Bazell manages to keep you interested.

While this book is about Her-2 and the development of Herceptin, it is so much more than that. I learned about the different kinds of treatment for cancer that were available when Herceptin was being developed and that was very interesting to me. I wept for all those women who lost their lives because Herceptin was not available to them during the trials. It's hard not to cry for them because they are more than names on a page ... these are human beings ... women who made a difference in the world and the loss of whom made an impact on their families and friends and in their professions.

And again I came away with a gratitude that Dr. Dennis Slamon did not give up. He knew what this drug could do. I know that only between 25 - 30 % of all breast cancer patients are Her-2 positive, but our lives count too! I will live because Herceptin exists.

A Bad One

This is going to be a bad week ... I can always tell from the weekend after the TCH. I am fatigued with muscle spasms, cramps, stabbing pains, bloating, my nails are hurting and I cannot put pressure on my fingers which makes it difficult to do the simplest of tasks. And to top it all, the awful taste is back and I have no desire to eat anything. I have lost four pounds since Thursday. I am flavoring my water with lemon slices again which I haven't had to do in a long time. Staying hydrated is essential.

I know this too shall pass ... thanks Lucy for the reminder. But there is still this week to get through even though I want to curl up in a ball and shut the world out. Thank goodness for small mercies although in my case it is a big one ... it is the week long break between the quarters and there are no students! I can work at my own pace.

One foot in front of the other ... one foot in front of the other ... that is how I get through this week.

Eight More to Go!

Today is my fourth TCH infusion and the 10th infusion out of the 18, which means that I have 8 more to go! I can do this! I can do this! I had a new nurse today and the infusion went well, but I do miss my Maria.

My levels are pretty good:
Absolute neuts: 9.1 which is up from last week but I expect it to plummet this week
Potassium: 3.8 which is up from the 3.4, so all the potassium rich food that I consumed last week helped

I've taken my decadron, am drinking lots of fluids, eating vegetables and keeping an eye on my fiber, so hopefully all will be well this week. I expect my Absolute Neuts to plummet as the chemo destroys my good cells as well as the cancer ones. And then that damn fatigue will descend upon me.

In keeping with my reward myself Thursday, I joined the Godiva Rewards Club and got a dark chocolate truffle today. Thank goodness chocolate still tastes good to me.

Will see how this weekend goes ...

Recurrence

I have not reached the stage of talking about recurrence rates with my oncologist ... I haven't thought it was necessary. But if you read the discussion boards, there are people who are obsessed with this. I do understand this but I have not had any need for assurances and guarantees because I have long understood that life is a gamble. However, people want to know their recurrence rates so that they can best determine what treatment they will undergo. And there are others who just need to be reassured.

My treatment has been very aggressive given the size of my tumor but I always understood the need for that given the HER2+ nature of my cancer. Every now and then the thought crosses my mind ... will this cancer come back? But it never stays long because I have faith.

On one of the discussion boards I ran across a link to this study which discussed my exact situation and the outcome for me is great: http://jco.ascopubs.org/content/28/28/e541 I am grateful!

Tick ... Tock

Tomorrow is my Big Witch chemo and it will also be my 10th one ... so only 8 more to go!!! But the most important thing is that after tomorrow I will have only two more Big Witch chemo sessions to get through. I can see the light at the end of the tunnel!

Now that air-conditioning has been restored at home, I have been able to exercise and I got to cook again after not being able to do it for almost a week. I'm trying to eat food high in fiber and am trying to hydrate more than usual because that will help immensely with tolerating the poison ... oh, I meant drugs ... and helping with the constipation. It's a spinach salad for lunch and soup for dinner tonight. I've also been making sure that I eat foods high in potassium because the nurse last week said that my potassium levels were down a wee bit.

I cut my finger nails as short as I could last night because I've got the black half moons from one of the drugs -- Taxotere, and my nails have been aching. Cutting them short has helped because they don't bang against anything especially when I type. I've read on the discussion board where some people's nails get black and then fall out. I'm praying that mine don't. I use gloves to wash dishes but I've noticed that hot water hurts my nails so I'm now doing dishes with lukewarm water.

I am still grateful that I am faring well. And I am utterly amazed at what the human body can tolerate and what my spirit can endure. I have stopped being annoyed at the doctors and nurses saying how well I am looking and doing. It is a testament to my spirit that refuses to give in to this crappy disease. So, thank you my nurses and doctors for acknowledging that the plan I embarked on when I was first diagnosed is working -- DO NOT GIVE IN TO THIS CRAPPY DISEASE!

When It Rains It Pours

I lost my cool a little this week and had some words with God. But He and I are ok now ... he understands that was the crazy Evelyn and not the calm one. It's hard sometimes when everything seems to be piling up on your head. This was my time.

When I came home Wednesday afternoon, it seemed that we had lost power in some parts of the house, and power was flickering off and on in parts of the house that had lost power. Wasn't too concerned because we still had power and the fans were going and we were still fairly cool in spite of the 90-degree heat we've been having.

Called Woodfin to have an electrician come between 2 - 4 pm to take a look. Monica drove me and Sarah to my infusion because my cowardly child could not do it herself, and John was at a conference in Jacksonville. The infusion went quickly. I had a new nurse ... Ann and I liked her. I thought my blood pressure would be sky high because of everything going on but it was surprisingly good ... 112/63. My absolute neuts was 1.1 ... normal finally! Took the girls for lunch at Capital Ale House as a "thank you".

Of course the Woodfin electrician was way late and he didn't bring us good news ... he told us that crimping on the wires in the Dominion box outside the house had melted and hence power to some parts of the house and not to other parts. I called Dominion Power and they arrived within the hour just after the Woodfin electrician left. The electrician redeemed himself by turning back and trying to find a way to give us temporary electricity to at least run the air-conditioning, but alas it was not to be, and Dominion Power cut off power to the entire house. Which meant that I lost my fan in the bedroom.

Thank goodness for having a good neighbor ... we took our frozen meats to Miss June's house and she asked me to spend the night but I didn't feel like leaving the cats all by themselves. Sarah had no such qualms ... she took herself off to her apartment ... I really can't blame her.

I survived the night with no air-conditioning and a dying cable box that screeched for hours until I thought I would go stark raving mad. Thank goodness I was able to take myself off to work and worked till 5 pm. John came home and we went to Marriott's Residence Inn where we have been in blessed air-conditioning for the last three days. We are keeping our fingers crossed that everything will be fixed tomorrow ... I need to have my kitchen back so I can cook food to prepare me for Thursday's TCH. And to exercise!

Yesterday was our 23rd anniversary and we chose to just have lunch with Sarah and David to celebrate. We didn't need anything else. OK chocolate makes everything better ... we are sharing a box of yummy chocolates.

The Day Before the Halfway Point

I am in an odd but happy place ... tomorrow I will be exactly halfway through my treatments. I don't have the words to describe how I am feeling!

It is a bit strange too because I sense I am entering a new phase of my treatment. I feel myself weakening ... it's harder to motivate myself now ... I have to almost force myself to exercise but I must keep at it! A weak body will weaken my spirit ... I know it will. I don't want to plunge into that darkness.

The bloating is constant now and not just the week after the TCH. It is so bizarre to see that chemo bloated belly where one didn't exist before. I have to eat small meals because normal size meals just make me miserable. Vegetables and fruits and meats are ok but starches seem to aggravate the bloating. It is about constant adjusting and adjusting ... I am a pretzel ... twist me this way and twist me that way ... I shall not break! Oops ... being a bit silly.

Getting to that time when I have to start eating lots of fiber and soups, but only after Saturday. On Saturday we get to celebrate our 23rd anniversary with lunch because too much food in the evening makes me miserable (see how this works? Adjust ... adjust).

Overall this has been a decent week with some days of just unexpected fatigue. Perhaps that had to do with having to sort through and launder all those bags of Sarah's clothes that are destined for Goodwill! I'm just kidding ... it's chemo fatigue.

Eight Down

I am almost at the half way mark with my infusions. With today's infusion I have done eight ... ten more to go! The infusion went well ... I got my good nurse Maria again and I was pleased. My absolute neutrophils are down to .6 this week, and I have to go on restricted activities again. Really? Really?

Before my infusion I had an appointment with my oncologist Dr. Schaffer. She is pleased with my progress and tells me that I am doing well ... that I am one of her best patients. I don't have to change anything I am doing. I asked her whether I would be on any medication after my Herceptin infusion ends in April. And much to my distress she says that I will be on something called Arimidex for five years. It's a pill that one takes everyday to suppress the estrogen that stimulates cancer. I wanted to scream bloody murder ... she wouldn't have thought I was a good patient then!

And of course when I get home I do research on Arimidex and none of it is pretty. If I had to choose now, I would choose not to do it ... I cannot deal with all the drug's side effects for five years. Why on God's green earth can't someone invent a medication without all these terrible side effects?

I'll just have to see what frame of mind I am in when April rolls around.

Memorial Day

I am thinking that today is a good day to be alive even as we honor the memories of those brave men and women who gave up their lives in service to their country. It's a beautiful sunny day ... sunshine and green, green grass, and Sarah is home, and my world is just right.

I am still suffering the effects of the TCH infusion on Thursday. I am still fatigued with that body numbing tiredness that knocks me out, and robs me of precious minutes. And eating is till hard ... everything I eat causes me GI pain. Nothing tastes normal but I am convinced that I will always be able to find something that will be edible for the moment.

This weekend it is sweet ice cold watermelon and in a few days it will be something else. It just seems a little odd that a big part of my world now is finding foods that I can eat and forcing myself to eat just so I can fight this monster.

David and Sarah are home for dinner, so we picked up some hormone-free ribeye steaks from Tom Leonards, and marinated them for about six hours. Beef still tastes good but I will have to split a steak with Sarah because a whole one is just too much. I can still eat rice so I cooked rice with chicken stock and topped it with fried shallots and crispy bacon. I also made some oven roasted potatoes which I am not always sure I will be able to eat. Potatoes are iffy ... creamy, soft food does not always taste good. I definitely cannot eat anything creamy and sweet. I am not doing well with sweet things.

But I am grateful for today. I will gladly take it.

Half Way Through TCH

When I first started, 18 weeks looked like such a long stretch of time, but now that I am half way through my TCH infusion and have had 7 total infusions, it seems so doable. The clue is to take one week at a time and check it off your list. My new mantra with the treatments is "live in the moment" -- just look at the step in front of you and conquer that before you put your foot down on the next step.

It is the same at work. On the week after chemo when I am weary to the bone and my concentration is bad, I set myself small doable tasks and I tackle one thing at a time. Small projects completed will add up to many jobs done in a day. Or if I have a big project, I do small complete tasks and before I know it, the project is done in a few days and I do not feel overwhelmed. You just have to accept that your life is different now. You have to fit this crappy cancer into your life ... you must not fit your life into it ... this gives it too much power over you, and you will never win.

I have come to accept that each day, each week will be different for me. Today for the first time my absolute neutrophils were 7.5 ... normal for the first time in seven weeks! Each week I give myself a little treat after the infusions. Tonight it will be eating popcorn and watching The Fighter. Last week it was lunch on Friday at the Irish pub with some friends. Little things to celebrate the end of another week of infusions and another week of surviving.

I have also signed on to be one of 60 people in a Bon Secours nursing survey of women with early stage breast cancer and how they cope. This will not help me but it will help all those other patients after me. I was happy to do it. I now belong to a sisterhood (I know men are affected by this too but it is still overwhelming female) and I believe it is my duty to do this and I do it gladly.

I am still trying to find out what God wants me to do with this.

A Decent Week

This has been a good week so far. I have been able to exercise and eat well and I've had good energy for the most part until today. I am a bit tired today and had to take a 45 minute nap and I am still yawning like crazy. Looks like it is going to be an early night for me ... the bathrooms will just have to wait till tomorrow.

It's getting harder and harder to keep the energy up but the end is in sight. On Thursday when I get my third Big Witch chemo, that will put me smack in the middle! And I will have 11 more infusions to go in this cycle.

My life is still chugging along.

Living Proof

I have just finished watching the movie Living Proof about how Dr. Dennis Slamon developed Herceptin. It has just occurred to me that a decade ago, before Herceptin, my HER2 positive cancer would have been a death sentence. It just seems a little strange to me that until this moment, I never really realized what my "aggressive" cancer meant. I knew that recurrence was high with this type of cancer but I never really thought that it could kill me.

But because Dr. Slamon never gave up, Herceptin was born, and I get a chance to live. I have so many people to thank for my life ... it just seems to be a debt I will never be able to repay. All I can promise is that I will not waste my life ... I will live it the best way I know how, and I will always be grateful to the many people who have given me this second chance.

And now I finally understand why every single doctor who has looked at the size of my tumor and then at the HER2 positive nature of the cancer has been amazed that it was discovered so quickly. I see the hand of God in this.

I am deeply grateful and very humbled.

Crappy Cancer ...

Today I found out that a friend and former neighbor in Smithfield has been diagnosed with a rare and aggressive form of breast cancer. My heart breaks at the news. We had kept in touch for over a decade after we moved from Smithfield but had lost touch the last two years and I was thinking of her today and googled her ... only to find out the horrible news.

Here we are ... two women fighting the same monster but doing it differently ... I am doing it privately and Connie's battle is a public one. It is just who we are. My whole life has been about finding the strength within ... hers has been filled with volunteering and public deeds. I cannot imagine that our hopes are very different ... that we live to see our children realize their lives; fall in love and start a family of their own; hold our grandchildren in our arms and be grateful that God has given us the gift of years that this terrible disease tried to take from us.

Why can't we find a cure for this crappy disease? Why? In the 1700s my Scottish ancestor, Cadwallader Colden, wrote to Benjamin Franklin about pokeweed and breast cancer ... looking for a cure even then ... little would he know that some three hundred years later, we are no closer to defeating this monster.

My prayer today is Dear God, thank you for the advances in treatment that has made chemotherapy tolerable enough that I don't have to tell my family ... "just let me die" but God we need a cure for this ... too many good lives are being lost.

What a Week!

This is my second Big Witch chemo ... four more to go. I got tired earlier and the fatigue lasted longer this time around. Yes, I know ... the cumulative effect, and boy can I attest to that! I was knocked out Friday night and was so tired all weekend-long. I spent Mother's Day on the couch snuggled with Sarah and I couldn't ask for anything better. John picked up dinner from Red Robin and I was able to eat about a quarter of the burger.

My absolute neutrophils plummeted to .5 which is the lowest it has ever been and so I have been restricted to the home and have to do the usual avoiding crowds, etc., etc. Explains the extreme fatigue too.

I couldn't wake up on Monday so that was a work from home day and thank goodness I had two ABA projects to work on.

I got a bit grumpy too ... I am attributing it to the extreme fatigue that not only could I not walk straight but I couldn't think straight either. God will forgive me.

My hair is continuing to fall out. There's still a complete thin layer all over my head but last night I got tired of sweeping hair off the floor, brushing it off clothes, picking it out of my comb, and I just cut it all off. I now have sparse spikes all over my head ... I look like an inmate at a POW camp, but I have come to terms with it. In August it will start to grow back. I've been walking around the house bare-headed. I know a lot of this freaks Sarah out but she says she is getting used to my bald head!

This no hair thing is a little freeing ... better than dealing with falling hair.

My crappy week is at an end ... I look forward to a new week.

An Old, Old Woman

Today I look and feel like a 90-year-old woman. My hair is continuing to fall out but a thin stubborn layer is still clinging on to my scalp. I am so tired that I can barely shuffle to where I need to be. Yesterday I could not stay awake for more than 10 minutes at a time. I had hoped that today would be better but I could not even wake up this morning.

Yes, I am whining today ... it's a "poor me" day but tomorrow I'll feel ashamed of myself. I am bloated and in discomfort and the thought of food makes me sick. I have lost another three pounds over the weekend simply because nothing tastes good. I have to force myself to drink to stay hydrated ... it's either drink or end up in hospital with IV fluids. Apple slices are tolerable but even those are starting to make me gag.

I'm off to see what work I can do from the couch at home.

Big Witch Chemo

Arrived at the Infusion Center for my 8:45 am appointment and was delighted to find that I had been assigned my good nurse Maria again ... yippee! I did not wear my wig to the center since although I have been losing strands of hair in the shower and when brushing, I do not have bare patches on my head. Besides, if my hair started falling out in clumps at the center, it wouldn't shock anyone ... surely they would have seen this before. But I did pack two scarves just in case.

My CBC was a mixed bag. My absolute neuts went up to 13.6 from the miserable 1.00 last week. This pushed it over the normal range of 1.8 - 8.0. This usually means that my body is fighting an infection somewhere but I have no temperature or pain ... there are no physical manifestations of infection any where. But the nurse had to get approval from my oncologist to treat me. Got it after about an hour.

My premeds this time were Pepcid, Benadryl, Tylenol, Aloxi and Decadron. In addition I will have to take the prescribed Decadron for three days -- the day before chemotherapy, the day of the chemo and the day after. This is to combat the nausea I had after the first TCH infusion.

I also learned that if you give Decadron too fast it causes what the nurses call "Hot Pants" syndrome which I experienced during the first infusion. It is the weirdest sensation ... you feel this intense hot itching sensation in your entire pelvic area which spreads to your head. This time Maria gave it to me over a 30-minute period and I did not have "Hot Pants"!

I know it is too much to expect not to have a repeat of that horrible Saturday ... why should I be different from anyone else going through this? I can already feel my body changing. Oh, how I will hate the days coming up. But I know it will end ... so I can do this ... I can do this.

Soup for My Soul and Body

 Tomorrow is my Big Witch chemo (TCH) so I am eating light today and wanted to make a batch of soup for dinner tonight and which I could have tomorrow and Friday as well. This recipe came from The Cancer-Fighting Kitchen by Rebecca Katz with Mat Edelson (thank you to my friend Donna), but as usual I modified it to use what I had in the pantry. I really liked this soup ... it reminded me of the broth soups I had as a child ... very yummy. I halved the recipe (I am including the full recipe ... just cut the ingredients in half). My substitutions are in parenthesis and are already in the halved amount.

 Chicken Vegetable Soup with Ginger Meatballs

 

Meatballs:

1 lb ground organic dark-meat turkey or chicken

2 tsp. grated fresh ginger

1 tsp. minced garlic

1/4 cup fresh parsley, finely chopped

1/2 tsp. sea salt

Pinch of cayenne (Paprika)

1 egg, beaten

1/3 cup cooked white basmati or jasmine rice

Soup:

2 Tbsp. extra-virgin olive oil

1 yellow onion, diced small

Sea Salt

1 large carrot, peeled & diced small (1/2 large sweet potato)

1 large celery stalk, diced small

2 cloves garlic, minced

1 tsp. grated fresh ginger (minced)

8 cups organic chicken broth (32 oz.)

1/2 cup fresh or frozen sweet peas

1/4 cup fresh parsley, finely chopped

1/4 cup fresh basil, finely chopped (1 tsp. fresh thyme)

1 lime, cut into quarters for garnish 

1. Meatballs: Line sheet pan with wax paper (I just used a flat platter). Combine the turkey/chicken, ginger, garlic, parsley, salt, cayenne, egg and rice in a bowl with a folk (do not over mix or meatballs will be tough). Wet the palms of your hands so the mixture doesn't stick, roll into 1-inch balls, and place them on the prepared pan. Place in fridge while you prepare the soup.

2. Soup: Heat the olive oil in a soup pot over medium heat, then add the onion and a pinch of salt and saute until translucent, about 4 minutes. Add the carrot, celery, garlic, ginger, and 1/4 teaspoon of salt and continue sauteing for about 3 minutes.

3. Pour in 1/2 cup of the chicken broth to deglaze the pan and cook until the liquid is reduced in half. Add the remaining chicken broth and 1/4 teaspoon of salt and bring to a boil. Lower the heat to maintain a vigorous simmer, then gently transfer the meatballs into the simmering broth. Cover and cook for 15 minutes.

4. Add the peas and cook for another 3 minutes. Stir in parsley and basil. Serve each with a wedge of lime.

5. Storage: Store in an airtight container in the refrigerator for up to 5 days or in the freezer for up to 2 months.

Note: The halved recipe makes 9 meatballs, making 3 meatballs per serving ... it was just right for me.

The Story of Hair

I am on Day 17 of chemo and I think I am starting to lose hair. I say "I think" because my hair is not coming out in clumps but more is coming out with regular brushing. I have been carrying my wig around with me for about a week now in preparation.

I am ok ... I am coming to terms with the fact that I will lose my hair. Why is this such a big deal? For me it is a reminder everyday that I have this disease ... it slaps you in the face every time you look at a mirror and touch your head and feel nothing where hair once was. Right now I see nothing outwardly of what my body is fighting ... I am healing well from the surgeries, I am working, cooking, cleaning and sleeping well. My activities have not changed much except for the naps I need every afternoon and having to go to bed an hour earlier most days. And having to stay away from people. And of course the change in taste. All those you fit into your life ... you can learn to live with almost anything.

We learn to cope with death and loss, illness and pain. Baldness? I suppose that too ... I shall find out soon enough.

And yesterday I received in the mail from a friend a book entitled It's Not About the Hair: and Other Certainties of Life & Cancer by Debra Jarvis. Well, we shall see ...

Another Good Herceptin Infusion

No one had to bribe me to get me out of bed today. Last Thursday, the promise of Japanese food was the incentive that made me crawl out of bed!

I was fortunate to get the good nurse Maria again today and she got the needle in on the first try again. We are still having to use a 1 1/2-inch needle instead of the normal inch needle. There was no pain ... just the pressure of the needle going in and that was all. My neurophils are up to 1.0 from .8 last week. It's still below the 1.5 that they would like to see.

My premeds was still Tylenol and Benadryle and that damn Benadryle made me sleepy again. The Herceptin infusion itself only took 30 minutes but the entire process took 2 1/2 hours. The big one is coming next week.

We talked about hair loss and Maria said it's usually between day 10 - 14 after the first infusion. I am on Day 14. I haven't lost my hair yet but I know that is coming. I wore my wig to work on Monday ... it felt like having a hat on my head. Adjusted it a couple of times during the day but for the most part it was fine. It was after I came home and took it off that I had this pain across the top of my forehead for about an hour or so. Overall not too bad.

Maria remarked about my good attitude and I don't know what to say about it. I don't know how else to be ... I have this disease and I have to deal with it. To me it's really quite simple ... I don't want it but I have it. Crying and brooding about it, changes nothing. I don't think it's my "good" attitude ... it's my practical attitude.

Well, me and my good attitude are going upstairs and getting on the elliptical for as long as my legs will allow.

12th Day after the Big Chemo

I'm feeling pretty good this week. I'm eating well, although some foods still taste horrible and water tastes like sludge but I've found that if you flavor it with slices of lemon, orange and cucumber, I can actually drink it again! I'm exercising at the same resistance level but doing 20 minutes instead of 45, but you know what, I am moving and doing the best I can. Yesterday I managed 20 minutes on the elliptical and 10 minutes of yoga. By the end of the night I was moving like a drunken sailor ... I meant to go one way but my body kept going another. But I went to bed early and slept like a blooming log till this morning.

This is a week that has surprised me and given me hope that I can do this ... I can go through this horrible treatment and not lose my mind. Some days will be hell but as long as I know they will end, I can do this.

It was hard not to go to church on Easter Sunday and I can't even remember the last time I missed service, but I have to stay away from crowds ... what is the term the medical folks are using? "Restrict my activities" ... that is what I am doing. I guess it does make sense .. catching anything would just about kill me with my white blood count being so low. I have read about people wishing for death at times like that. It's bad enough that I have to sit at the reference desk and be exposed to whatever someone is carrying but what choice do I have? This is my job.

People have surprised me this week too ... someone I work with went to Chimayo, New Mexico, and brought me back some healing sands. I was deeply touched and my Catholic soul lit up at that ... I am carrying that tin with me until the doctors tell me that I have my 21 years. Isn't that crazy? I do want those 21 years ... I want to see my child graduate, find her first job, plan her wedding, give birth to her children ... I want to look into those faces and see their mother ... I want the joy of loving them and knowing that life goes on.

Another person dropped off a little note that said "Finding the purpose in pain is the hardest part" and that is so true. In the last four months I have said this to John so many times, I am sure the man sometimes wants to gag me ... "What am I supposed to learn from this?" "What good is supposed to come from this?" I still don't know ...

I do know I have a wonderful band of soul sisters, a wonderful family whom I love beyond all measure, and friends who are the best! I am sending virtual hugs to everyone ... I hope to see you all again in August when this treatment is over.

A Good Herceptin Infusion

At 8:45 am, we presented ourselves at the Infusion Center for my 9 am appointment and was told that my appointment wasn't until 11:15 am! And I thought, "here we go again" ... but I showed the receptionist my appointment schedule and sure enough, it said 9 am.

Thank goodness, they were able to fit me in with wonderful nurse Maria, who needed only one shot to get the needle into the port and I didn't even feel the pinch ... love that woman! While waiting for results of my WBC to come back, the snack cart came around ... you can even get a non-alcoholic martini! Boring old me ... I got the apple juice and Ritz bits cheese crackers.

There was an anxious moment when the lab results came back and my Absolute Neutrophils came back at 0.8 ... the lowest range for normal is 1.5, so we had to wait for clearance from the oncologist's office to give me the infusion. Thank goodness we got it ... I didn't want to have to come back.

My premeds for this were Tylenol and Benadryle ... and I got sleepy ... dozed off a couple of times! Hoping I would be wide awake through this one, but no such luck.

And as promised, I got my Japanese lunch after the infusion. We stopped by the house to pick Sarah up and then we went to Osaka for my bento box. I need protein, so I ordered the sesame chicken, and it was too much to finish ... I'm having it for dinner too. Yum, yum.

Good experience today!

A Mixed Bag

It's hard to believe that a week has gone by and tomorrow I will be at the infusion center for my Herceptin. I am not looking forward to that.

I am however, grateful for the week I have had. Friday following the TCH infusion was almost normal except for the swelling and the discomfort at the port site. I ate normally but in hindsight probably shouldn't have. I noticed a feeling of nausea building up and the slow disintegration of my taste buds until even water tasted slimy.

Saturday morning was perhaps my worst period but who can say whether it was the damn chemo or the Dulcolax going through my system. But there were certainly moments when I almost wished for death (I know, I know ... wimpy). But even in moments like these God sends you little signs to comfort you. Mine was Cloudy and Tiger sitting together by the bathroom door keeping an eye on me, and at that moment if either one had asked for the moon, I would have crawled to get it for them!

Saturday was needless to say, shot to hell for me. I took a shower and stayed in my oldest, most comfortable flannel pajamas, sipping on ginger tea while curled up in the armchair. Amy made me chicken ginger soup and I was able to eat some of that. But the problem is I have now developed an aversion to ginger. I should have listened to those people who said to not eat your favorite foods within three days of getting chemo.

On Sunday everything still tastes like rubbish but there are a few things like the cran-pomegranate juice that still tastes pretty good ... crunchy green beans sauteed with just oil and minced garlic tasted mighty fine. So there is hope that I will find some foods to eat that will sustain me. I have developed the weirdest cravings for food that I have not had in almost 30 years -- Mum's fried rice with Chinese sausage; soy sauce chicken with rice and roasted peanuts (note to self ... put peanuts on shopping list). I have lost seven pounds in a week. But now that I have figured out that I have to just try eating some of the foods that I crave, I will not starve to death.

I have developed a powerful hankering for Japanese food ... maybe if we get out of the infusion center at lunch time, hubby will take me to Osaka tomorrow ... bento box here I come!

The tiredness I can do nothing about, but I just have to listen to my body and not push beyond what it can do. On Monday I stayed at work until 1 pm ... until it became clear that I could not go beyond that without falling asleep at the desk or putting everyone's life in danger as I drove home. Yesterday, I stayed until 2 pm and today I will stay until 3 pm or 4 pm. It's just so strange to wake up feeling so well and then to feel oneself fading an hour later ... I guess as John says this is my new normal.

The constant feeling of being off balance is a nuisance but I can shuffle like an old lady for 18 weeks ... let the students think the librarian is drunk!

Oh, I miss my water but I cannot drink it. Thank goodness for ice cold lemon tea!

My Chemo Bag

I have prepared myself a chemo bag to take with me to work. It has the following items:

1. Curel moisturizer
2. Immodium
3. Benadryle
4. Flushable wipes/medicated
5. Desitin
6. Thermometer
7. Toothbrush & toothpaste
8. Biotene mouthwash
9. Ziplock bags
10. Tylenol
11. Aleve

A Hellish Beginning

After 13 hours we are finally home! This was supposed to take only five hours at most but it was eight more hours beyond that before we were done. The horror of the nurses trying to get the needle into the port will be one I won't forget anytime soon.

First the young nurse named Ashley tried to insert the one-inch needle into the port and although it went in, she was not able to get any blood out and had to remove the needle. She then went to get another nurse, an older more experienced nurse who tried another one-inch needle and then an 1 1/2-inch needle. The pressing down on an area that was still not healed and throbbing with pain and the stabbing of the many needles was agony. When she couldn't get anything, she went to get another nurse, Maureen, who also tried, and by this time I was in so much pain, that the name of the almighty was mentioned! And if you know me, once I reach this point, I am in real bad shape! Tears popped out too and I felt like a big baby.

After four attempts they finally gave up and called Dr. Schaffer's office who told them that they wanted me taken to the Angio department where the needle would be inserted with the help of x-ray.

And while we were waiting, a little nun came to pray with me and give me communion. I loved it and it calmed me down! It reminded me that God is always with me and that he will help me bear everything I have to.

When we got to Angio, I had to wait for the doctor for quite a while. The nurse, Michelle, took one look at the swollen port area, and said she wasn't going to touch it and went in search of a doctor. When the doctor finally became available, he too had to make two attempts. First he used the one-inch needle ... seriously people? Haven't we been down this road before? At least he discovered that there was a hematoma between my skin and the port and he drained that. On his second attempt with a 1 1/2-inch needle he finally got it in and was able to draw blood. And don't think it was any easier ... although he was more skillful ... it was still painful and there were several "Oh Gods". But it was done!

Got back up to my room 603 and there was "wonderful" hospital lunch. Ok ... I lie ... it wasn't bad. I was so hungry because all I had had was a piece of toast. There were thin slices of pork with some kind of sauce, mashed potatoes (ate all of this); spinach (ate two forkfuls); roll (pinched it); peach fruit cup (ate two pieces); peanut butter cookie (saved for later since I had my yummy ginger cookies) and water.

When the chemo drugs had not appeared yet by 1:30, I sent John out to get lunch for himself. I offered to share my hospital food, but Arby's won out for him. I read my two cookbooks -- "Eating Well With Cancer" and "Cancer-Fighting Kitchen," planned my menu for the week and did my shopping list.

After 2 pm when I was getting ready to start my book The Postmistress, nurse Ashley comes with my premeds -- Tylenol, Zofran, Zantac (50 mg), Ativan (0.5 mg), Benadryle (25 mg). One of the medications caused the weirdest intense itching ... started in my bottom of all places and then spread to under my arms and my head, but the Benadryle quickly took care of that. Strange! And of course the Benadryle knocked me out. Grrr ... I didn't want to sleep during the day, I'm afraid it is going to affect my sleep tonight.

When it came to the chemo drugs, it started with Herceptin (Trastuzumab) 260 mg, which took 90 minutes; then Docetaxel 124 mg which took 1 hour; and then Carboplatin 600 mg which took another hour. There were many, many trips to the bathroom in between!

And dinner came right after I had eaten my ginger cookie ... I am liking that cookie even better the next day which is common with anything made with spices. Time melds the flavors. I've also been drinking my ginseng ginger tea (more ginger the next time) and water.

I was hungry ... I ate all the chicken, carrots, touched the rice (no one can cook rice properly), ate all the fruit cup; cherry pie (yum); gave John the vanilla ice cream; drank all the water.

Finally all the medications were done and the port flushed! It is just after 9 pm and we are finally home. It's been a long, long day! But I survived this first chemo session and I will survive the next and the one after that and I shall to do them all with grace (thank you Donna for the reminder).