"there's nothing like looking, if you want to find something" from the hobbit, by j. r. r. tolkein

yesterday, i had my third chemotherapy. it was almost like starting over, because i knew that the doctor would be changing one of the chemotherapy drugs due to some neuropathy in some of my fingers and toes. it is a little bit better, by the way, but not completely gone. he told me that even if he were to slash the dose to one that would do little, it could still cause permanent neuropathy.

so the doctor told me that i had two choices: choice number one was to do nothing. to stop the chemotherapy and go home. my eyes got bright, i sat up in the "chemo chair" ( the nurse had already started my fluids, as the doctor was delayed for a bit), and smiled. he said, well this one is not for you. :(    my second choice, i felt as though i had chosen the wrong door on a game show, is to use the adriamycin and cytoxan. i told him that i was very wary of the adriamycin. he laid out the pros ( mostly) with some cons thrown in  for good measure. i told him that he would have made a very good salesman, because i now was agreeing to the adriamycin. i will say that it took less time yesterday. instead of the 5 pre-medications that i had received before the taxotere and cytoxan, i now was only having to get three. and the adriamycin is given IV push. although it is still a slow process. i was very, very fortunate to have gotten such a wonderful chemo nurse yesterday. she hit my " old faithful" vein on the first try, and when she was giving the adriamycin, she did it just as she was supposed to- injected 2ml, check for blood in the line, inject 2ml,etc. that is so she does not accidentally push the drug into my tissues.

which brings up why i have such an aversion to adriamycin in the first place. when i was younger, 30 years bc ( before children) i worked as a staff pharmacist at wake med raleigh. there was one particular doctor who wanted the pharmacists to mix his chemotherapy, which he gave in the hospital. we all took turns and one day i drew the short straw. i scrubbed down, headed for the sterile flow hood in the IV room , and proceeded. when i first injected the diluent into the adriamycin i was shocked at the color. it was red, and i mean stop sign, hunk of burnin' love, blood red. as soon as i got my breath, i mixed the adriamycin and was almost home free, when a couple of drops the the drug dripped onto my fingers. i washed my hands at once, but in a few days  all of the skin peeled off several of my fingers. our pharmacist manager did not think that we needed any sterile gloves, a cost issue i guess. now it would not be acceptable not to use them. that made me think, if a couple of drops can do that to the skin on my fingers, what on earth is it doing in some poor person's body? i vowed then and there to never , ever have this drug! well, i can tell you that i do not say never, ever anymore. gets me in trouble every time.

i have also heard the patients' horror stories of the " red devil". no, i did not nick name adriamycin this, someone beat me to it. nausea and vomiting have been two of my greatest fears of  having chemotherapy. this drug has a bad rap for causing that. also, i have to now have an echo cardiogram at the end because the red devil can also damage your heart. i will not bore you with the rest of what the red devil can do, i will just say that it comes by it's nick name honestly.

so far, i have had more nausea than usual. tomorrow is the " dreaded third day" after chemo. i am hoping that things will stay about the same, and if so, no problem. i am drinking 5 of the 20oz tervis bottles full of water every day. one of the best pieces of " cancer advice" that i have received was to drink lots of water. this sweet little old lady told my husband to tell me to drink lots and lots of water. she said that she did just that, and had no nausea( i think she did not get the red devil, but i am not sure).

they have changed my chemo date from every three weeks to every two weeks. that is because taxotere is given every three, and adriamycin, every two weeks. so my last chemo, thank goodness, is august 14th, instead of august 19th. i am hoping that i will feel good enough to start again. i think just knowing that it will be my LAST CHEMO will be a big incentive. i am, as always, thankful for the thoughts, best wishes and prayers that i receive from my family and friends. i am so very grateful for this.

" it does not do to leave a live dragon out of your calculations, if you live near him." from the hobbit, by j. r. r. tolkein

this coming wednesday, july 29th, i will be receiving my third round of chemotherapy. since i have some neuropathy, the chemotherapy nurse said that the doctor would probably change the taxotere (the most likely culprit) to something else. i have mixed feelings about that. not that i am enjoying numbness and tingling in some of my toes and fingers, but it is sort of like " the devil you know" kind of thing. i know what side effects that i get from the pre-meds, the most uncomfortable being the red, and hot face, neck and chest that i get the day after i get some iv decadron. before i started treatment, the oncologist went over all of my pre-meds and i asked him if we could leave off the decadron. he said, probably not, as this hopefully prevents anaphylaxis from the taxotere. the sleepless nights and fluid retention seem insignificant compared to anaphylaxis, so i am getting the decadron.

as i said, i know what side effects come with the taxotere. i am also getting some cytoxan, which is the " milder" ,haha, of the two chemotherapy drugs. i had a problem with the cytoxan with my first chemotherapy session. they ran it in a little fast and i had these intense sinus pressure pains in my head and face. last time, i asked the nurse to please slow down the rate of infusion, and it went a lot better. instead of being hit by a ton of bricks, it was just a few pebbles.

the way that the chemotherapy goes, is that you have blood work done that morning, and the oncologist looks over that, and speaks to you about what side effects that you had last time. he then makes the decision on what drugs to use and the dosage. nothing is pre-mixed, or set in stone, as the saying goes. i have no idea what drug he would use instead of the taxotere. he might just decide to reduce the dose. my husband does not want me to get the taxotere this time because he is afraid that my neuropathy will be permanent, which is a possibility.

i also have noticed that not only did my side effects start a day earlier this time, compared to the first time, but it has taken me longer to recover. the first time, i had a full week of feeling better before i had the next chemotherapy session. this time, i have only had a few days. i know the reason for this, and it is, of course, that my immune system has been compromised. that makes me a little more anxious  about my next round. i try to stay positive and keep in mind that many women have gone through this, and with tougher drug regiments than mine. i am already looking forward to august 19th, though, which will be my LAST chemotherapy. i think just knowing it will be my last session will make it easier to get through.

along with the chemo sessions , i am undergoing the reconstruction process. my plastic surgeon, who i really like, calls it the " expansion process". i can not help but think of the oregon trail computer game that my kids were so fond of, when he uses this expression. head them up, we are moving west! we are moving along slowly on this. sometimes i do not feel like getting the saline injections( side effects from the chemo). also, unfortunately my stitches broke open on one side, and it is still healing. last time the surgeon decided not to " fill "er up" because of the way the incision looked. like all plastic surgeons, i guess, he seems to think that most women want to look, well, endowed. i told him that in my case,on a scale of 1 to 10,  if a 10 is dolly parton, and a 1 is pee wee herman, i wanted to be about a 5. i have to keep reminding him of this for some reason!

so, i am not sure how this next chemotherapy session will go. i am a person who does not like to be surprised. i like to research and be prepared. but in life, of course, unexpected things happen. i would never in a million years think that i would be writing a blog on my experiences with breast cancer. living near that dragon has been a life changing experience for me. this has been a new chapter in my life, a very complicated one at that. not everything has been bad, of course, there have been uplifting and positive moments for sure. but overall, things in my world have changed forever.

" roads go ever on, under cloud and under star, yet feet that wandering have gone, turn at last to HOME." from the hobbit, by j. r. r. tolkein

i had a doctor's appointment- with my oncologist- today. it was just supposed to be for lab work. i had extreme bone pain with the neulasta injection last time, so they decided to skip it this chemo and just monitor my blood work. unfortunately, my lab work showed that i have neutropenia- a fancy word for very low white blood cell count. so, the decision was made to try the neupogen- which is like neulasta, but has to be given over at least three consecutive days. the neupogen will  still cause bone pain, but it is not long acting, and the bone pain is not supposed to be as severe. the nurse who gave me my first injection today told me that her observation has been that if you did not do well on one, you could tolerate the other. i sure hope she is right! along with the neupogen, i am having to take a pretty strong antibiotic, just in case i should get sick. the physician's assistant told me that i could get out, but to avoid large crowds and whatever i do, avoid walmart. ha- ha- ha.

so, i have decided to stay at home. i have to go to the doctor's office for the injections of course, but other than that, i am what you would call " home bound" for now. the doctor will check my white blood cell counts again on friday. if they have not gone up sufficiently, then they will " do something else". i was not brave enough to ask what that " something else" was. i am just hoping that the neupogen does it's job, and i will not need to find that out.

my sister has been down to visit me the past couple of days. i had a pretty rough weekend, and was not feeling up to being by myself monday or tuesday. i really appreciated the company, and we had good visits. it has been somewhat difficult to find silver linings in the cancer cloud, but one thing that i am thankful for is the strengthening of my relationship with my sister. we were close growing up, but as adult children often do, drifted apart. now we are about close as we have ever been, and it is very comforting to me.

i do enjoy being at home, thankfully. i have beautiful flower gardens to enjoy, and it is peaceful and quiet here. i have my computer, my little window to the world, and now that i am feeling up to it, i can check in with my friends every now and then. i know that social media can become a problem, but for us home bound folks, it is pretty important. of course, i talk to my children about every day, and that is definitely a blessing.

i suppose some journeys have a life of their own. so many twists and turns, so many decisions to make about where to go, what to do. but one thing is for certain, at some point, everyone will end up at home. and that is the best journey of all.

" you certainly usually find something if you look, but it is not always quite the something that you were after." from the hobbit, by j. r. r. tolkein

well, i had my second chemotherapy session yesterday. or i am half-way to finished, as i like to put it. i was in the office for six hours. of course, that included a short trip to the lab for blood work, and a short doctor's visit before the infusions started. in case you wondered how chemo goes down, i will tell you how it happens. there are many treatment rooms around a central nurses/doctor's station. some of the rooms have ( heated!) recliners- i use one of these. they have rooms with hospital beds for the really sick guys- usually the elderly.

the nurse starts your iv, and begins a little saline drip. there are 5 different pre-chemo medications that are given. these are mostly in small iv bags, and do not take too long to infuse. first they give me a pepcid iv. this is to help protect the stomach. then comes the emend iv- this is a long acting drug to help prevent nausea and vomiting. next comes the aloxi- a drug that i had never heard of before i started my treatments. it is sort of like a long-acting zofran. it is for nausea and vomiting,too, but it stays in your system for 3 days. then comes the decadron- which is a steroid. i did not want to have this one, but the oncologist said that it helped in preventing anaphlaxis from the taxotere, so i put my worries aside, and am getting this,too. last thing they give you before the chemotherapy drugs is an iv push dose( not in a small bag, they shoot it right into your iv line) of benadryl. the nurse always tells me " nighty- night" when she gives it to me. i fight sleep because i know that the next bag will be the dreaded taxotere, and i do not want to be asleep for that!

so the big, bad, bag of taxotere is now infused. the oncologist lowered my dose from 150mg to 125mg because of all of my intestinal problems last time, i will spare you the details, so i am hoping that i will get along a little bit better this time. the reason i do not drift off to sleep after the benadryl dose  is that unfortunately a patient can have anaphylaxis at any time to this drug. it is not guaranteed that if you do not react to it the first time, you will not the second, third, fourth,etc. my nurse told me that in her experience about 95% of patients who do not have anaphylaxis the first time, will not have it at the other times. lets hope i am in the 95%! worrier that i am though, i just can not relax until i see how it goes. they slow the infusion rate down for me at first, too. i appreciate this on many levels.

last comes a smaller bag of the cytoxan. i had intense nasal and sinus pain from the first infusion. it did not last too long- about 30 minutes after the infusion was over. i asked the nurse to slow down the infusion rate on this one,too. that helped a lot. i had only minor discomfort, and it was only in part of my sinuses, not in my face or eyes.

the nurse then runs in a little more saline, to clear the lines and just for your comfort. i drink a lot of water, but i do not want to get dehydrated! this time i felt a lot more " loopy" if you will. i am not sure why, but i think that it was the benadryl. i sent a facebook message to someone, with about every other word misspelled, so next time jeff has instructions to remind me to put down the cell phone before the benadryl comes out!

saturday will be the third day after the chemotherapy. that is when the long acting medications are gone, and i am on my own with the chemo drugs. not having to have the neulasta shot this time, which gave me extreme bone pain, will be a major advantage. i just may be dealing with the intestinal problems, which actually have already started, and perhaps nausea/vomiting. i have medicine for both, so i will be o.k.

i have gotten a lot of good advice from my "chemo buddies" concerning how to deal with the cancer, chemotherapy, hair loss,etc. i appreciate all of  the advice and tips that i have received. here are my top four favorite pieces of advice that i would like to pass along to you.

1. pray daily. prayer is powerful, calming and will give you strength.

2. drink lots of water! i drink 5 of the 20 oz. tervis bottles of water every day, starting on chemo day and for several days following. on chemo day i drink one bottle on the ride over, one during my chemo, and one after. two more when i get home. then, 5 bottles a day for several days afterwards. there are two reasons for this. one, it helps prevent nausea because it moves the stuff out of your system. two, the cytoxan accumulates in your bladder and may cause bladder irritation resulting in painful cystitis, even bloody cystitis. this was enough to convince me!

3. be good to yourself. it does not have to be big things, although i have ordered a few things from amazon- a little more than usual. one of my favorite things is to sit on the front porch when it has cooled down, and admire the flower garden that my husband so lovingly planted for me. i call it my healing garden, and it it peaceful and beautiful.

4. show gratitude and appreciation. this is my own advice. i try to be grateful for even the smallest things, and have  appreciation for the cards, letters, emails, gifts, hugs and smiles from my family and friends. it benefits everyone, i think. and it means the world to me.

i can NOT  say that i am grateful that i have breast cancer. or had, hopefully! but i can say that i have learned a lot on my cancer journey. it may not always have been  what i was  looking for, but i have learned a lot of valuable life lessons so far along my way. and for that, i am grateful.

" may the hair on your toes never fall out!" from the hobbit by j. r. r. tolkein

i knew it would happen. my oncologist tried to prepare me. i knew the reason behind it- the chemotherapy kills cells that multiply rapidly, mostly the cancer cells, but our hair cells multiply quickly, too. i have always liked my hair, but i will admit that i have taken it for granted. my sister and i used to tease our mother about her devotion to her  weekly hair appointments. we told my mom that if a natural disaster ( tornado, hurricane, blizzard, etc.)  happened to be going on at the same time as her hair appointment, she would surely make it to the salon somehow! lately, though, my sister and i agree that we both really look forward to our own hair appointments, and barring natural disaster, will always keep our own appointments.

so, a couple of days ago, i happened to look down on my sweater and was shocked. yes, red hair on a black sweater is hard to miss. and it was quite a bit of hair at that. i tried to tell myself that perhaps i would be lucky somehow and my hair would hang in there. today, the hair loss continued all day long and was substantial. i could not postpone the inevitable - i would need to shave my head. it has been just a hair( good grief, no pun intended) over two weeks since my first chemotherapy. that is right on schedule for the hair loss according to the oncologist.

my husband and i  decided to buy a shaver and agreed that he would do it- privately at home , just the two of us. a couple  of techs that my husband  works with have had some experience in hair styling, and they picked out a shaver and told him how to do it. i guess we could have figured it out by  ourselves, but it was really nice of them to help us. that said, it was one of the more traumatic experiences that i have ever had. i cried, a lot, but my husband just kept on gently shaving until he got it down to a buzz cut. we will go further in a day or so. i showered the hair off, and slipped on my sleep chemo beanie. it is so soft and light weight, but also warm. i am thankful that i am not having to do this in the winter.

i have ordered a couple of wigs, but of course they have not arrived as yet. i do have some rather pretty chemo beanies which i can wear until the wigs get here. my next chemotherapy is coming up this wednesday, july 8th. it would be nice to have the wigs by then, but if not, i will just wear one of my pretty beanies. it was incredibly hard losing my hair-harder than i had imagined. i kept telling myself that it is only hair, and it will grow back eventually. all that hair hitting the floor unleashed some pretty major tears. what got to me the most, though, was when my husband stopped for a minute and looked me straight in the eyes. he told me i was beautiful and he would love me forever. it was hard to feel sorry for myself after that.

so, i sincerely hope, that if you are a hobbit, the hair on your toes never falls out. for the rest of us, i wish that no one would have to have the hair on their heads fall out, or have to shave their head. but i suppose we can always buy pretty wigs,scarves and chemo beanies until it grows back. and i am looking forward to my next hair appointment- whenever that may be.