Wendy's Story

This morning is pretty much like most of my mornings lately…pretty lazy. My house is a mess and I am using all of this as an excuse not to clean. I am trying to get myself emotionally ready for this afternoon.

I am taken back 12 years ago and remembering how I was steeling myself for going in for my first chemo treatment in Anchorage. I did really well too, I was strong and determined, right up until the nurse had to keep poking me to find a vein to deliver the treatment - then came the tears in an endless stream. I upset the whole roomful of chemo patients. The nurse determined that I was a great candidate for a port-a-cath and so I did not end up having chemo that day but a date a couple days hence was set up for the port-a-cath. After that, access to my veins was easy. That reprieve will not happen today because I had the port-a-cath put in last Monday.

I knew that I did not have to go to this appointment alone but for today, that was my choice. I want to have a better understanding of the process, how long it would take, my emotional and possibly physical response to it and the physical space at the treatment center. What I am thinking right now is that this first treatment will be fairly easy. I think that the effects of these drugs will likely be cumulative and that with each successive treatment the side effects will likely escalate. Treatment will be every two weeks and as I look at the calendar this morning, I see that I will have treatment December 20th, two days after Wynette and family arrive here for Christmas. Damn poor planning on my part. That is also the time that I expect my hair to be falling out. I sure don't want to scare my grand babies.

It is time for me to go. I am going to stop down at the Community Center to visit and possibly have a bite to eat with my co-workers. On Mondays the Head Start cook fixes lunch for all the employees. They have all been so supportive of me and friendly faces will be good before heading off.

Later….

Well, I made it successfully through my first treatment! My appointment was at 1:15 and I checked in and sat down and waited to be called. The clientele was varied and I have to admit to wondering what kind of cancers they were dealing with. Mostly the patients appeared to be older though there was one young man about 30. I noticed one lady who came in with no hat and very little hair. Basically, she had a very, very short, gray butch. She sat very nonchalantly and seemingly comfortable. I was picturing that look on me. Certainly after my hair falls out, it is going to come back in completely gray. I was called back before 1:30 and led to a back room in the oncology department. It was a small room and certainly not well appointed. It is about the size of my living room, dining and kitchen put together. There are a variety of chairs and most of them recline. I picked out an empty one that looked relatively comfortable. It doesn't recline enough to sleep but enough to be comfortable. My nurse was Deanna, a young woman in her early thirties with her hair back in a ponytail. She was all business. She explained each step along the way and wanted to make sure that I had read up on the chemotherapy process. I told her that I had had chemo 12 years ago. When I told her that I had had CMF (Cytoxin, Methotrexate and Flurauracil -spelling wrong, otherwise known as 5 FU) she looked like she wanted to speak to that but I told her that I was perfectly aware that this would be a whole new ball game and that I understood the dissimilarity in these two treatments and after effect. She nodded as if to indicate that is what she wanted to say.

There were about five patients having chemo with me. Some were reading and some were just sitting. The average age of the patients was probably 70+. No one talked much other than to the nurses. I am thinking that next time I will borrow Laura's portable CD player so that I can watch a movie. Due to the lack of space in the room, visitors are apparently rare and discouraged.

I started with a saline and then added a medication - can't remember the name right now- for anti-nausea. Next there was a "push" of the Adriamyacin. This is the highly toxic but effective chemo. This the stuff that Gramma and her friends call "Red Samurai." It is very red in color and I was warned that I would pee red. Very true! I peed before leaving the clinic and it was already red. The Red Samurai was followed up by the Cytoxin. The immediate cytoxin reaction was an irritation of the nasal membrane that stopped shortly after the cytoxin drip was stopped. That drip was followed by a saline flush. The entire process took about 2 ½ hours. When I start the Taxol, it is supposed to take longer-over six hours. This first one was better than I expected. However, as I said before, I do feel that the treatment effects will be cumulative. Deanna said that I need to come in tomorrow for a subcutaneous shot to encourage white blood cell growth.
She also gave me another prescription to counteract the bone pain that is expected after the shot.

I felt pretty well when I left and headed to the grocery store to pick up a few things. For some reason, I had a hankering for a salmon steak for dinner. Maybe chemo is like pregnancy for cravings…. Anyway, I decided against buying one at the grocery store because they are all farm raised and went to Charleston to Chuck's Seafood. Wouldn't you know, they were out and wouldn't have any till tomorrow. Oh well, the best laid plans….

I did start to feel progressively less well and energetic and spent my evening in my recliner watching TV and napping. Not exactly nauseous but some niggling thought of getting sick. My eyes also hurt from the light. Probably all a result of expecting to feel badly. I went to bed and took a couple of Tylenol PM to help me sleep.

Day 2

I woke up feeling gratitude to have slept through the night. Unfortunately, it was 3 in the morning. I did manage to nap off and on till 7:30. I feel pretty good today. I do have some facial flushing and a very brief bout with nausea. Went in for my shot.

Most of you will find this stuff pretty boring but I wanted to write this for me and thought I would share it with those that are interested. I will make updates on treatment dates and on side effects.

Hope you all have a wonderful Thanksgiving. I am very thankful for all my friends and family. I am truly blessed. I know that so many people go through so much more and without any support. Thank you all.

Love,
Wendy

Nov 30-Dec 7

11/30/04

I had a message on my answering machine when I got home about 5:30 yesterday. It was the oncology clinic. Apparently someone forgot to tell me that one week after treatment I must go in to have blood work done. I called them this morning and set up an appointment for this afternoon. I guess I will fall into the appropriate routine.

I made a big pot of turkey soup with barley last night. My cousins Linda and Toni came up and had lunch with me. Linda asked me if I am getting bored yet since I have not been working since the 1st of October. For whatever reasons, I am not. I am grateful not to be at work where there is too much stress in my position.

Over the last 3 or 4 days I have been experiencing varied symptoms such as heartburn and low key headaches. Last night I started to feel mouth irritation. I don't know if these are part of the chemotherapy reaction or if I am just imagining all this. I had understood that the majority of symptoms and reactions would take place soon after treatment…not several days later.

I went in to get my blood drawn. Generally the nurse would use the port a cath to draw the blood but it was apparently blocked. A lab tech drew from my arm instead. During my conversation with the nurse, she affirmed that the symptoms I have been having are due to the Adriamycin. That is the first time that I had heard that the acid reflux is one of the expected side effects.

12/2/04

Yesterday the bone pain began in my lower back. The discomfort came from out of nowhere. The Advil did seem to help it. I had a lot of trouble sleeping again and watched TV off and on throughout the night. This morning my arms ache! I just took the Advil and expect it will kick in soon. My hair seems to be still pretty firmly placed on my scalp. I do check it a few times a day. I think that I will likely be relieved when it finally happens.

12/4/04 - 12/5

My arms are still aching a little and am having frequent bouts of the reflux. I tried the prescription for the reflux but the "cure" was worse than the symptoms! Laurabeth picked me up some Tums and I keep a handful close by. The hair on my head is loose and pulls out when gently tugged. Probably only a couple of days left. Sleeping continues to be a problem. Generally I sleep from about 4 hours a night and seem to have difficulty taking naps. I am going to try and little harder for the naps.

Rocky and Jan came back to help get our houses ready for Christmas. Rocky and Laura put up the outside lights on my house and across the street and Mom and Dad's place. Jan put up my Christmas tree and put the lights on in. The rest of the tree will wait until Siena and Isabella get here on the 18th to finish decorating. The lights look great at all of our houses and makes me excited about the coming holiday. I am so looking forward to Christmas with my family. The presents under the tree will be for the little ones from Santa and being together will be present for the rest of us. Laurabeth and I are so thrilled that we not only have Mom and Dad here, but also Rocky and Jan living close by. It is a Christmas to celebrate.

12/06/04.

My scalp feels tender this morning and the hair is coming out in some serious bunches. I washed my hair very, very gently but had a hard time combing it out afterwards. I looked for something to cover the drain during my shower with and catch the hair. I thought that I had a sieve that might work but couldn't find it and ended up using a four-sided grater….it didn't work too well. I called Laurabeth to let her know that it is time for my head shaving. We decided to do it tomorrow night. I don't want to subject my shower drains to those coming clogs of hair. I would only be able to put off the inevitable for a very few days and during that time, there would be hair everywhere. I wake up at night with loose hairs on my face. Ugh!

My appointment at the oncology unit was not until 1:00 so I joined the Health Center staff at their weekly Monday lunch. It was a cold, windy day and we had toasted cheese sandwiches and tomato soup. Just perfect.

Mom did offer again to drive me to my appointment but so far at least I feel fine to do the drive. There really is not a comfortable place for her to wait during the treatment. My guess is that later on I will ask her to drive me and just give her my cell phone so that I can call her to come and get me when I am done. I know how much she wants to help me but just having her close is a huge comfort.

Showed up for my appointment on time and didn't have to wait more than 5 minutes before being called back to see the doctor and have my preliminary blood work before treatment. Once again, they were unable to draw the blood from my port-a-cath and ended up, after quite some time, getting a lab tech to draw it from my arm. The problem is that it takes from and hour to and hour and a half to get all the necessary blood chemistries run before they will even begin the couple hour process of treatment. And so, the upshot is that I did not finish at the clinic until 5:30. I told the nurse that before the next treatment I will come into the clinic the morning so they can run all the chemistries before I come in for treatment. She thought that would work well as long as it was convenient for me. I am sure it will be more convenient to get it done and leave rather than sit around waiting for results. The results of this lab work showed a slight drop in my liver function and a fairly sharp drop in my potassium levels. They will watch the liver function and gave me a list of potassium rich foods to eat - topped, of course, by bananas.

12/7/04

Seemed to tolerate treatment well. Slight headache and flushing. As ever, trouble sleeping. I need to be drinking lots of water to flush out the cytoxin and though I usually drink a lot of water, now that I need it, I am having trouble getting enough down.

I need to go back to the clinic today for my Neulasta shot. Maybe I will see if Mom wants to go along because I want to go shopping afterwards to look for a Christmas dress for Siena to wear to the county Christmas party. Isabella already has her dress. Oh, what sweet little girls.

Love,

Wendy

Post 1st chemo treatment

Day 3/4

Just in case anyone thinks that I am stoic or not frightened by this process, it must assuredly does scares me. I admit to frequent tears. I had a meltdown just tonight shortly after our Thanksgiving dinner. I left for home before the celebration was over so as not to ruin the spirit. We have Thanksgiving dinner on Wednesday night so that we can be thankful all day on Thursday that we can eat leftovers, play games, and not have to cook! It has an added benefit when you have married children with spouses that would also like to eat with their families. It gives them the opportunity to eat Thanksgiving dinners with both families.

My teeth and jaws hurt today and I realize that I must be clenching my teeth. Luckily I have a night guard that I haven't used in months that I put back into service wearing it as I write this.

Later… I finally thought about my jaw hurting so much and remembered about the bone pain that I was likely to experience. I went on line and found out that indeed people do have trouble with jaw pain. I tried acetaminophen but it didn't seem to cut the pain. The nurse had recommended that I try that before the prescription meds. I finally took the medication. I didn't notice much of a change at the time but when I took another this morning it seemed to get better.

My body already does not feel familiar anymore. I feel ill at ease. It is forever changed by the cancer and surgery and now is invaded by chemicals that kill the cancer and healthy cells indiscriminately. I am not sleeping well. I go to bed and sleep for 3 to 4 hours and then I am awake. Either my mind is busy thinking about everything or having to go to the bathroom to get rid of all the water I am drinking on doctor's orders. Usually I am not up more than once a night - this night was 5 times!

It was a wonderful Thanksgiving Day. We all went to Mom and Dad's for breakfast and Laura cooked. Mom and Rocky had their perennial favorite - pancakes with turkey gravy. It was a low key day that ended with a great visit with the family reminiscing about old times. We did a lot of laughing. Great medicine. It is so terrific to have Mom and Dad living down here across the street from Laurabeth and I as well as Rocky and Jan so close. Rocky and Jan spend most of their weekends here with us and they are such a help and comfort. Now, if we could just get Terry, Bev and family down here, we would complete our original family unit. Of course I would still miss Wynette, Zach and the girls but don't expect them to ever live here. I will content myself with visits to and from them and be grateful for every moment that I get to spend with them.

I do think that the worst is over for this first treatment. Don't get me wrong…it was not that bad. It is just hard to think of the side effects getting progressively worse. It is also hard to know that for the time being, and even though I participated in the decisions about treatment, that my body has pretty much been turned over to the medical community and that for the next few months, I am tied to that decision. I feel like saying, "Excuse me, but I really don't want to do this."

Day 5

Hallelujah! I managed an almost unbroken 5 ½ hours of sleep last night. Small victories.

Love to all,

Wendy