Tuesday, November 30, 2004
We had a great Wednesday before Thanksgiving. I was able to work. M-E and Whitney were delivered to the house by Colleen and they made cookies. My mom, in usual Mom fashion, had taken the chips out of the bag and put them in a Ziplock. Don't ask me why, I just find little bags of stuff everywhere. The girls discovered that the recipe on the Ziplock was completely inadequate. They started to search for Chocolate chip cookie recipes. I was informed that lots of cook books do not have such a thing. Fanny Farmer finally came through. I can report that with See's Chocolate Chips , they were the best.
We then went to find Advent Candles and paper for the famous Christmas letter. We went to Outback and then home. We had to get up early for what will always be referred to as TURKEY BREAKFAST. Those were good moments and I was so focused on the next day I did not truly relish them. It was great to just be with Whitney and Mary-Elizabeth.
The hospital is always a reminder of being and paying attention to good moments. We shared a room with a family that is from Port Orchard. They are only a month into the process. They are traveling a different road. They received news of their house selling and a pre-Christmas move. They want so much to be together for Christmas and Sara can not be home unless home is here. Every one rejoiced in the moment of sale. The worry about how to have a child in intensive treatment and moving and finding a house and Christmas came later. They need a 5 bedroom house within an hour of the hospital, with a good school district for $325,000.00 or less. I wish that was the only miracle they needed .
M-E is doing a bit better today. She got some happy news I will let her share at her own time. Suffice it to say she is a happy little girl. She has slept most of the day. She ate a bowl of Honey Nut Cherrios and I have been able to coax a bit of water down her gullet. She has a stubborn streak and she is mad at me right now. She is mad that she is sick, she is mad that I fuss, she is mad that I want her to eat, she is mad that I .......................................... I guess I am mad about all those things also but I am going to try and enjoy a few moments of quiet, and the neighbor's giant blow up Christmas Pooh Bear that replaced the giant Turkey and know that we are home. We get to sleep in our own beds and we are almost at the end of Consolidation. I am going to be happy and content in this moment.
Monday, November 29, 2004
She is very sad and depressed. She is just sick and tired of all of it. This was promised to us to be a good time and she can not see very many good times in the future. We were not ready for a 5 day hospital stay where every day she feels worse. Being forced to leave from post Turkey time festivities was just gut wrenching. I had wanted to get the tree up and I did not even have a chance to find or buy new lights. I just see my happy child leaving down a road I can not walk with her. She has gone to that awful place were I can not reach her.
Sometimes in the tunnel there is does not seem like there is hope. She is in a very dark place. I am going downstairs to see if I can spark her spirits. I am more worried now than I have ever been. She is so mad at me that we are here and feels guilty that she wants me here but feels bad that I have spend nights here and then cannot effectively work. What a mess.
She wants to stop treatment. She knows I need to work. She knows that if I don't work it is bad on many fronts but then she wants me with her right now. I hate that I can not be in more than one place.
Friday, November 26, 2004
We went to Thanksgiving at Whitney's Grandparents. Ruth had a flight to Denver around 2:00 so we had what will always be called Turkey Breakfast. I had the girls with me on Wednesday night. M-E was warm but not at panic stage. We packed up the pies, the kids, the stuff and headed over the freeway and to the burb to a house that smelled like heaven when we walked in.
The turkey was falling off the bone at 11:00 a.m. When they say turkey at 11, they mean it. Great cranberry jello, stuffing, rolles, vegies, garlic potatoes, and all the rest. We actually ate in moderation. When you have turkey breakfast, you know that there are many more times during the day to eat again, and again and again.
Ruth left and the second round of folks showed up. They were an odd bunch in that they immediatly had pie afterwards. We gladly joined them. I must say the pumpkin was very good this year. Cameron, the 3 year old even went so far as to take her Binkie out to eat.
We chatted post pie and then around 2:00 I took her temp. 101.1. That was that. In the car, quick good byes and then that nagging voice in the back of my head." Sally don't let your car get on empty"
We made it, back to room one, up to Hem/Onc Hilton.
Worst part, I never did get to the turkey sandwich.
Thursday, November 25, 2004
Well, you might say, go have one. You don't have to wade through the day, the dinner the inevitable family dramas or the crowds, the dread of getting Christmas done right. I just think it is time to acknowledge that the post Thanksgiving Sandwich is always the best meal of the day. I wonder if America's Test kitchen has done show on this issue. I have a theory why it is so good.
I can bake a turkey designated for sandwich meat. I can buy cooked turkey in many forms, Mystery turkey stuff, turkey with pepper on the edges, fresh roasted turkey, smoked turkey, natural turkey, and a variety of other turkeys. But it never tastes like the turkey from the slightly still warm picked over bird that has been cooked with the season's best dressing, sliced for the main meal, touching some left over potatoes and that strange but necessary jelly-o thing. It is the sandwich that is made with those bits of turkey from weird places on the carcass that juicy bits hang out. That weird round piece on the backbone or the most tender shreds that are on the inside ends of the rib cage. The mayo must be cold, the cranberry sauce warm, the bread brown substantial and the stomach just not really ready to be fed.
We have had the grand meal, the full spread but we still hunger for more. I guess that is part of what makes us human, we are willing to make the best out of the left overs. We are lucky like that. Just think, what would this world be without Post Thanksgiving Turkey Sandwiches.
Wednesday, November 24, 2004
1. She is holding on to her red blood cells (28.5) That is good, the chemo is not killing too many or she is making some of her own.
2. Her platelet count was 101 that was up from 62 on Saturday. She is making her own.
3. ANC 482- was up a little so she is making some immune cells.
I did let her sleep until she woke up and she went to school. Of course, I received the call at 10:30. We chatted and there was no apparent Mom substitute allowed. I finished up a thing or two and back in the car, up to school and home.
I hooked her up to some fluids and put her to bed. Colleen B. had offered to take care of her and as she puts it, she has prior "PICC line Flushing experience" . It seems with Mary-Elizabeth that sometimes she is just two years old and wants her Mommy. Yesterday was one of those days.
She asks for so little and all I can give her is time. Nothing I do can make this awful experience go away. We both will carry the scars forever. She will have the mark of the PICC line and a body that was attached with every possible substance her body can tolorate. I will never recover from that first voice on the phone: "Dr. Garcia Oncology" I will give her the time and attention that she needs.
I did some work and then made pies. I love them to have a day to sit and become Sally's greatest pumpkin pies. I can be a good lawyer between oven ajustments.
We are going to Whitney's Grandparent's House. So the "Over the River and Though the Woods" does apply this year. They live in Federal Way but that is like an adventure. We are eating early so the road should not be too bad and I don't think we will violate the ONE HOUR FROM THE HOSPITAL rule. We seem to be in a quiet treatment time right now.
We have only one more appointment scheduled at the hospital until Pearl Harbor Day. I am not worried about that day because I think we have all ready survived the big attack. M-E was complaining about not wanting to be sick She does not want to eat chicken soup for 2.5 years. I told her she was not sick. She was in remission and that now we were making her body a place that no self respecting llwuecqemia(little known Welch spelling) cell would ever call home. She liked that better.
Christmas decoration update:
Georg Jensen ornaments are up on the arch. We now seem to have 2 from 2001 and 2000 is still missing.
Village is out but there seems to be continued black out. Road crew has yet to appear ( You never can rely on a contractor)
no snow yet.
Goal for this upcoming week-end: Obtain a tree. Get it up and get the lights on it at least.
Newest Prayer: Oh, God, where are my lights?
Sunday, November 21, 2004
Well we are going to do it right. If I can find the lights that is. My boxes were in pretty good order and they have been re-arranged in such a way that I think we might have an "Oh, God where are the Baby Jesus's and why are they separated from their family" kind of Christmas.
I just don't know what to do but put up decorations. I can handle that part of the world. I am going to find the lights and the call will go out to see if we can get them put up. M-E loves outdoor lights and indoor lights more than anything. I know that lights are things we can enjoy. We will do a tree. Where it is going to go is a mystery because we have moved a table to the spot I work in the house which is were the tree goes but we will figure out something. I suggested we put the tree in front of the fireplace and duly chastised. Where w0uld we have a fire? Oh well. One step at a time.
Mary-Elizabeth is starting to feel better. One more dose of Vincristine and then we have a week off. We went to the hospital yesterday for a rare Saturday visit to see if she needed more platelet's. We had breakfast first. We had been up early and because Mom's train left at 7:30 am from Seattle. We were up at 5:30 am so we could make lots of coffee for the train. We went to the station and called poor Ruth at 7:05 a.m. and said in our very awake voices LET'S MEET AT THE HI SPOT FOR BREAKFAST" She hauled Whitney out of bed and we met in Madrona and found out that people in that part of town don't eat breakfast on Saturday until 8:00. Ruth went off for coffee and Whitney slept in the car. Mary-Elizabeth rejected my suggestion that she was leave the warm car and press her belly against the brick work so she could give herself a shot. Kids are so difficult these days.
We had a great breakfast. Good Company, Good coffee, good granola and green eggs and ham,Good Juice, huge plate of Mexican Potatoes. Mary-Elizabeth and Whitney and I headed to the hospital to see if she needed anything. We did not make it half way there before M-E asked my to pull over. Poor Whitney, she looked so sad as M-E left her very expensive breakfast at the Japanese Garden parking lot. It is such a helpless feeling.
We found that if you need new pajama bottoms, the sweet, sweet nurses will get them for you. If you wipe your leather shoes with alcohol wipes they are as good as new.
They took her blood and we played scrabble. We need some dictionaries. We came up with some good words but those Qs,Zs and Xs are always a problem. Why do they not come out of the bag until there are no letters left. We received some good news and were sent home without any thing having to be supplemented.
We tried to go to University Village but none of the parking prayers worked. You do know the parking prayer: "Hail Mary Full of Grace, Help me find a Parking Place." We know that all prayers are answered, sometimes the answer is "Go home your daughter needs to rest you silly silly person."
Saturday, November 20, 2004
I remember when I was a child I woke both parents up to see the Man in the Moon. It was a clear night and the moon had been shining with greater intensity than usual. I woke up, looked out the window and saw this bright Man in the Moon. More accurately he looked like a giant ginger bread man. I checked more than once but was just sure that Mom and Dad would want to see this great thing.
I did not have to scream "COME LOOK!!!!!!!!!!!" too loud in our little house to have them come running. They were the parents of a 4 year old you know and deep sleep was not something they were able to enjoy very often. I remember my dad looking out of the window and trying to assure me that the moon was beautiful, and full and indeed worthy of a middle of the night viewing. He was not able to see the same man I still was so vividly describing to him. Mom assured me that I had seen the Man but then it was now time to return to bed.
I have found over the years people don't really care about many of things I see. Varied Thrushes that only appear at the head of a storm while migrating through are not as exciting to others. The one lone humming bird that flys by is not a concern.
Mom has confirmed that Orion is out in the Southwestern sky. Winter is coming. He is there very faithfully on his winter jaunt.
Mom goes home today. I have to get her out the door. Mary-Elizabeth and I are going to the hospital for a bag or two of plateletts this Morning. Getting her up may be a trial. I think I will try the "Come Look, Orion is in the SKY!!!!!.
Wednesday, November 17, 2004
I am asked all the time "What Do I Need"? It is so apparent to every one that I need something but I can not put my finger on what that is. I don't think I "need" any one thing. It is a plethora of items.
I need to not have to think about what I need. I am so so weary at this point in time trying to manage all of this. Liueqkemia is a full time job. Having a 12 year old is a full time job, my job should be a full time job. The simplest things are so difficult and I feel like a failure in not having an answer and not calling people more and not having a chance to send out a card or an e-mail.
HELP!!!!!!!!! THE TIME AND ENERGY MONSTER HAS TAKEN OVER MY FORMER LIFE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I need to be around people more but don't have the time to do so. I need to not be around people that take any energy from me. We don't connect much with each other anymore as a society. It is more like we "Intersect" with each other at certain points in the day or week. We have all become so busy with work and play dates and school activities and sports practices and homework and projects that big events are what bring us together. Mary-Elizabeth and I are out of the loop. I don't get to just chat with a fellow mom or have a cup of coffee with a friend while I wait for school to be out. I have to watch as Mary-Elizabeth is forced to live with impending disappointment every day. She gets to plan a certain activity but one bad number and she gets to sit home with her mom while her friends go to the dance and to school and to the mall and to the movies. It is just a fact of our lives at this point. But there are times that it is a rotten rotten reality.
We all have the best of intentions but simply don't have the time to follow through we all seem to drop the ball. Then we have that guilty, "Oh, God, I meant to do __________(fill in the blank) and now it is too late to___________(fill in the blank)." I feel like I am letting everyone down but know that I have not. It is made more difficult in that there are so many times that even a simple phone call is difficult. We all have to ajust our expectations of how the world works. Life is just different and we are still exploring what that really means.
Everyone is weary. It is human nature. Every one has a limit to how much they want to listen to what is going on. When someone askes "What can I do?" I often don't have any answer. I know that everyone wants to help with this process. Logically I should have be able to give suggestions and I have come to realize I don't know the answer to that question. I think everyone has to realize that there is no right or wrong answer. It is sort of like the Nike motto; JUST DO IT. If you can think of something that would make your life easier, execute. I promise that if I can think of something, I will let everyone know.
We are at the beginning of month three and I would like this entire event to be done. I wish I could wrap up this blog and make it into something we can journal and wrap up neatly. The reality is that every single day things go sideways, there are traps around every corner and it is easy to let our guard down. All it takes is one false step and this becomes a very different story. When I get complacent and I forget to do something like take the air out of the heprin flush or I don't wipe the PICC line long enough or I get a bubble in the Lovanox shot or I could start the series of events that send us to the hospital for a bad infection. Each trip out of the house is fraught with potential hazards. Each bite of food could cause a problem, each encounter with a person or an animal or a hand rail could be a potential killer. It is just mind numbing.
Mom thinks I need a tranquilizer. I think I need an attitude ajustment. She sent me out to just sit on the back porch to relax and watch the cats not catch the squirrels. All ll I could see were the full gutters and the trimming that need to be done and the lawn furniture that needed to put way and the hanging baskets that needed to emptied............ I need to give myself a break. I will work on that, now that I am a grown up.
Tuesday, November 16, 2004
Of course that didn't work. She needed a blood transfusion. I had figured we would be doing one of those this week because her skin had taken upon that particular shade of pale that was achieved in prior centuries through the use of regular small doses of arsenic. I left the hospital while she waited for the blood to arrive.
I surprised everyone by walking into the door. I did a bit of work, put out a fire or two. Sat down to do some more work and the call came. She had become violently ill and they needed me back at the hospital. She had reacted to the Peg and would never want to see another chicken strip again.
I headed back to find a very sick and groggy child. She was in a very strange state. It was apparent that she was not doing well. I just wanted to grab her and hold her and make it all better. I was not able to touch her because I have had a cold and did not want to complicate the situation. She had been given a bunch of benyadryl, some hydrocotozon and they were trying to get a pint of packed red blood cells into her before she totally crashed. Needless to say we were all in bed by 6:00 when we were able to go home. I was just glad they were not admitting her. I knew that if I could get her home she would be better off. I also knew that if I said " Do you think we should stay? " We would have still been there today.
Things have been much better today. She slept last night, I was up every two hours to check on her but she was able to eat this morning and go with mom to do some shopping. I had a very good cheese cake with Margarita Candles. They were unlike any I have every seen. We had a quiet evening at home and for my birthday I was given the news that she never has to have another "Peg" shot again.
Life is grand.
Monday, November 15, 2004
I was with her this morning for her second Peg asparagus shot. The nurses change but the needles and syringes stay the same. She is in for three pints of someone's Red Blood Cells. She should be perky this evening.
In case anyone is interested, Saint Theresa is known as the Saint of the
>Little Ways. Meaning she believed in doing the little things in life well
>and with great love. She is also the patron Saint of flower growers and
>florists. She is represented by roses.
>May everyone be blessed who receives this message. Theresa's Prayer cannot
>REMEMBER to make a wish before you read the poem. That's all you have to do.
>There is nothing attached. Just send this to seven people and let me know
>what happens on the fourth day. Do not break this, please.
>Prayer is one of the best free gifts we receive. There is no cost but a lot
>St. Theresa's Prayer:
>May today there be peace within. May you trust your highest power that you
>are exactly where you are meant to be. May you not forget the infinite
>possibilities that are born of faith. May you use those gifts that you have
>received, and pass on the love that has been given to you.. May you be
>content knowing you are a child of God.... Let this presence settle into our
>bones, and allow your soul the freedom to sing, dance, praise and love.
>It is there for each and every one of you.
Sunday, November 14, 2004
We all dressed up last night and went out to Palisades for dinner. M-E had a salad and one third of the famous PuPu platter. She was happy and I was ecstatic. I am still sure that there is some magic food we can feed M-E and she will get better faster. I am just sure that if we can convince her to eat or drink just the right thing she won't need a blood transfusion.
She is headed for one this week. She is getting more and more pale each day. She has had 48 doses of Chemo and 12 doses of radiation since we started Consolidation on September 25th. She only has 5 more before the 6th of December when we begin the first Interim Maintenance phase.
I look at the calendars and the schedules and try to contemplate what it all means and where it all leads. Each child is given a "Road Map" . It lays out the treatment and doses for the course of treatment. It is sort of like a Triptych from AAA. We have been able to turn over only one page of the map. Soon we move to the next page and continue this journey. I just hope there are somethings I recognize as we follow this path. The not knowing and not being able to plan makes me crazy.
I find that lots of things make me sad. It is the little things like not knowing if we can plan to go to someone's house on Thanksgiving. Wondering if we plan a big Christmas if we have to cancel. Wondering is I should plan for M-E to be in Crew in the Spring.
To complicate the sitution is this doubt and fear in the back of my mind all the time. Will I regret it if we don't do a full blow-out Christmas? What if we don't go to see the Nutcracker this year? Do we go so she can see it or do we stay home because there are germs? Will she ever be cancer free. I have yet to find any assurance that this will ever really go away. I keep running into articles on "secondary cancers", shorten life spans, learning disorders, liver damage, kidney damage, brain damage.......... emotional damage. The standard line is that I can not think about that but then how do I not think about it. How do I ever let it go? How do we plan for a future if we don't know what the possibilities are going to be.
I will try and focus on today, and this moment and watch the squirrels.
Saturday, November 13, 2004
We have seen a 1940's army camper, a front loader under an Ernst Hardware tent, a sail boat, a zodiac with motor, a cabin cruiser and a mail carrier's jeep come out of the back yard. We have seen truck load after truck load of stuff be hauled away. We watched the opening of the garage wondered in the amount of wood, planks, metal fence posts and other long pieces of timber there were. We have watched as the garage sagged and counted the moments before the certain collapse would occur. We marveled at the discovery of the 1940's white Volvo with the old toilet perched on top. We could not believe that there was an extra engine that later emerged. The stuff keeps on leaving and no one is sure if the 1952 Airstream is still there.
Our neighbor is a hoarder. He is a very nice and gentle man that is kind to children and all of God's creatures and would never let an item go unclaimed. He is moving. Finally the city left enough notes on his doors and the insurance company complained and the fire my brother extinguished helped convince him it was time to go. He will never be forgotten but not missed.
The move has entertained my mother and M-E. It has been a source of amazement for me. I was horrified and ready to clean Ohio house out. I have now realized I could be a massive collector of every thing under the sun and never, ever, have as much stuff as he has moved.
I think the moral of the story is that even when you are all tapped out there seems to be more in your garage that will keep you going. I am feeling very tired right now. I finally have a cold. M-E's numbers are high enough that I don't have to leave the house. The last three months have caught up with me.
It has been three months. We are supposed to be done with this phase on Monday but we are three weeks behind. Her nasty shot is on Monday. She is dreading it but will make it through to the end of this phase. We have a bit of a break. Only a couple of appointments a week. If we can make it through without an infection..........
Thursday, November 11, 2004
The object of all chemotherapy drugs is to kill the cancerous cells and not harm the adjacent healthy cells. To that end, scientists tried to identify characteristics that are unique to cancer cells and are not found on normal tissue. A distinct cancer trait could serve as a potential target for a chemotherapy drugs and thereby fulfill the above goal. One feature that is truly unique for most cancer cells is that they grow at a rate faster than normal cells. Therefore targeting some aspect of the cell growth cycle seems reasonable. Fast growing cells would be affected the most and slow growing cells would be least disturbed. In fact, that is the basis for many chemotherapeutics. This seems obvious when considering the side effect profiles of most chemotherapy drugs. Hair follicles, skin, and the cells that line the gastrointestinal tract are some of the fastest growing cells in the human body, and therefore are most sensitive to the effects of chemotherapy. It is for this reason that patients may experience hair loss, diarrhea, and rashes.
The human body processes and excretes all drugs through either the liver or the kidneys. Therefore, when a patient has kidney or liver damage, giving chemotherapy becomes precarious. Administering the recommended amount of drug may prove to be too toxic in a patient unable to metabolize and excrete it. The pharmacokinetics for cancer patients are very complex and chemotherapy pharmacology is a subspecialty on its own. Unfortunately, kidney and liver damage often result due to cancer invasion, limiting the patient's chemotherapy options.
Pharmacokinetics is further complicated in the cancer patient, as they are often taking multiple medications, some of which have overlapping metabolic pathways and side effect profiles. An example of this difficult situation is in the brain cancer patient. Because brain tumors often present as seizures, many of these patients take anti-seizure medications. Anti-seizure medications are metabolized by the liver and affect the metabolism of many chemotherapy drugs. Dose adjustments are an absolute necessity to avoid toxicities or sub-therapeutic dosing.
The cell cycle
The cell cycle is broken up into four phases the G1, S, G2, and M phases. The G1 phase is the phase most active in protein synthesis. The cellular DNA at this phase is tightly coiled and is not actively being transcribed. Few chemotherapy agents are active at this phase of the cell cycle. By contrast, the S phase is the synthetic phase of the cell cycle. DNA replication is most active and many chemotherapeutic agents are most active in this phase. G2 represent a time when mostly RNA, but some protein, is actively produced. Mitosis, actual cell division, occurs during the M phase. There are two major classes of chemotherapy drugs that are most active during this phase of the cell cycle.
The remainder of this article includes a summary of the major classes of chemotherapy drugs.
Alkylating agents are the oldest class of anticancer drugs. Almost all of these drugs are active or latent nitrogen mustards. Nitrogen mustards are various poisonous compounds originally developed for military use. Alkylating agents all share a common mechanism of action but differ in their clinical activity. They attack the negatively charged sites on the DNA -- the oxygen, nitrogen, phosphorous and sulfur atoms. By binding to the DNA, replication, transcription and even base pairing are significantly altered. Alkylation of the DNA also leads to DNA strand breaks and DNA strand cross- linking. By altering DNA in this manner, cellular activity is effectively stopped and the cell will die. Chemotherapy drugs in this class are active in every stage of the cell cycle. As a consequence, this class of anticancer drugs is very powerful and is used in most every type of cancer both solid tumors and leukemia.
In general, prolonged use of these drugs will lead decreased sperm production, cessation of menstruation, and possibly cause permanent infertility. This class of chemotherapeutics should never be used in the first trimester of pregnancy as they are been shown to increase fetal malformations. Use in the second or third trimester does not seem to carry the same risk. All alkylating agents can cause secondary cancers although not all agents are equal in their carcinogenic potential. The most common secondary cancer is a leukemia (Acute Myeloid Leukemia) that can occur years after therapy.
Some of the more common alkylating agents include: Cyclophosphamide, Ifosphamide, Melphalan, Chlorambucil, BCNU, CCNU, Decarbazine, Procarbazine, Busulfan, and Thiotepa.
In 1948, Dr. Sidney Farber showed that a folic acid analog could induce remission in childhood leukemia. Approximately 10 out of the 16 patients treated demonstrated evidence of hematologic improvement. This experience provided the foundation for scientists to synthesize a number of other agents that either target naturally occurring compounds or inhibit key enzymatic reactions in their biochemical pathways. In general, all antimetabolites interfere with normal metabolic pathways, including those necessary for making new DNA. The most widely used antifolate in cancer therapy with activity against leukemia, lymphoma, breast cancer, head and neck cancer, sarcomas, colon cancer, bladder cancer and choriocarcinomas is Methotraxate. Methotraxate inhibits a crucial enzyme required for DNA synthesis and therefore exerts its effect on the S phase of the cell cycle.
Another widely used antimetabolite that thwarts DNA synthesis by interfering with the nucleotide (DNA components) production is 5-Fluorouracil. It too has a wide range of activity including colon cancer, breast cancer, head and neck cancer, pancreatic cancer, gastric cancer, anal cancer, esophageal cancer and hepatomas. A unique and interesting aspect of this drug is its toxicity profile. 5-Fluorouracil is metabolized by a naturally occurring enzyme called dihydropyrimidine dehydrogenase, DPD. There is a small population of people who may be deficient of this particular enzyme. Lacking DPD does not interfere with normal body biochemistry and thus the phenotype is silent. However, when these patients are challenged with this chemotherapy drug, they are unable to metabolize it and therefore get acute and sever toxicity. The most often seen toxicities include bone marrow suppression, severe GI toxicities, and neurotoxicities which may include seizures and even coma. It is important for the oncologist to recognize this early and provide the patient with Thymidine as an antidote. A drug called Capecitabine is an oral pro-5-Fluorouracil compound that has similar side effect potentials.
Other antimetabolites that inhibit DNA synthesis and DNA repair include: Cytarabine, Gemcitabine (Gemzar®), 6-mercaptopurine, 6-thioguanine, Fludarabine, and Cladribine.
Many of the currently effective anti-cancer drugs are from natural sources. The drug, daunorubicin was isolated from Streptomyces, a soil-dwelling fungus. Doxorubicin, another Anthracycline drug, was isolated from a mutated strain of the same fungus. Both of these drugs have a similar mechanism of action, but the latter is more effective in the treatment of carcinomas. This class of chemotherapeutics works by the formation of free oxygen radicals. These radicals result in DNA strand breaks and subsequent inhibition of DNA synthesis and function. Anthracyclines also inhibit the enzyme topoisomerase by forming a complex with the enzyme and DNA. Topoisomerases are a class of enzymes that serve to unwind the DNA double strand helix to allow for DNA repair, replication and transcription. This class of chemotherapeutics is also not cell cycle specific. The most important side effect of this group of drugs is cardiac toxicity. The same free radicals that serve to damage the DNA of the cancer cell may damage the cells of the heart muscle. Oncologists monitor heart function very carefully when patients are on these medications. Other commonly used anthracyclines include Idarubicin, Epirubicin and Mitoxantrone.
Another small peptide isolated form the fungus Streptomyces verticullus is Bleomycin. Its mechanism of action is similar to that of the anthracyclines, in that free oxygen radicals are formed that result in DNA breaks leading to cancer cell death. This drug is rarely used by itself rather in conjunction to other chemotherapies. Bleomycin is an active agent in the regimen for testicular cancer as well as Hodgkin's lymphoma. The most concerning side effect of this drug is lung toxicities due to oxygen free radical formation.
The drugs in this class of chemotherapeutics act by forming a complex with Topoisomerase and DNA resulting in the inhibition and function of this enzyme. The presence of Topoisomerase is required for on-going DNA synthesis. These drugs are used in many solid and liquid tumors and the side effect profile of this class of drugs is agent specific. Camptothecins include both irinotecan and topotecan. The parent compound, first identified in the late 1950's, is a naturally occurring alkaloid found in the bark and wood of the Chinese tree Camptotheca accuminata.
Etoposide, a chemotherapeutic that works by the same mechanism, is a natural product isolated from the mandrake plant and is not considered a camptothecin but rather an epipodophyllotoxin.
Vinca Alkaloids The leaves of a periwinkle plant, Vinca rosea, were used to make tea that reportedly improved diabetes. Early research showed that aqueous extract of this plant administered by injection into rats resulted in their death within a week. Further investigation showed that the rats die of sepsis due to bone marrow suppression caused by this extract. Isolation and chemical characterization lead to the currently used drugs: vincristine, vinblastine, and vinorelbine. These chemotherapeutics bind to the tubulin and lead to the disruption of the mitotic spindle apparatus. The disruption of mitosis implies that these drugs are active specifically during the M phase of the cell cycle. They have a wide application to many different malignancies and cause neurotoxicity as the most prominent and dose limiting side effect.
Another class of chemotherapeutics that are specific for the M phase of the cell cycle is the Taxanes. The taxanes include paclitaxel and docetaxel. They bind with high affinity to the microtubules and inhibit their normal function. This class of drugs has a broad range of clinical activity including breast cancer, lung cancer, head and neck cancer, ovarian cancer, bladder cancer, esophageal cancer, gastric cancer and prostate cancer. The most common side effect of these drugs is the lowering of the blood cells. These compounds were first isolated for the bark of the Pacific yew tree Taxus brevifolia in 1963. It was not until 1971 that paclitaxel was identified as the active component.
Natural metal derivatives were also shown to have some activity in the fight against cancer. These agents work by cross-linking DNA subunits. (The cross linking can happen either between two strands or within one strand of DNA.) The resultant cross-link acts to inhibit DNA synthesis, transcription and function. The platinum compounds can act in any cell cycle. Cisplatin is used most often in lung cancer and testicular cancer. The most significant toxicity of cisplatin is kidney damage. Second-generation platinum, called carboplatin, has fewer kidney side effects, and at times may be an appropriate substitute for regiments containing cisplatinum. Oxaliplatin is a third-generation platinum that is active in colon cancer and has no renal toxicities, however, its major side effect is neuropathies.
There are other drugs now being used as effective therapies for malignancy. These include hormones for breast, prostate and endometrial cancers, monoclonal antibodies, immunotherapy with IL-2 and TNF alpha, and small molecule inhibitors. The process of drug discovery involves much time, effort and resources. New approaches are constantly being developed and modified. The process of testing a new agent in clinical trials begins with the discovery of new compounds, new ideas, new pathways, and new principles.
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Consolidation 63 days of very unpleasant and arduous treatment.
There will be no good memories from this phase. It is full of nasty chemo and radiation and side affects. We will remember it as the phase where Kerry lost or should I say conceded. I am sure we could have had a re-count and maybe the Supreme Court would have appointed him and maybe the war in Iraq would have come to an end and maybe I am still having a bad dream..............................
People talk about being in shock after they hear bad news. I think shock is just a denial device. It lets you deal with the news and reality of your true situation. I think we should have denial support groups. I need a bit more denial right now. The reality is just too much this morning. I think I am tired, I need to go to work, my weariness is catching up with me and I do not see that there is any time for me to deal with getting some real rest for the near future. I have come to the conclusion that a few hours does not do it. I think I need a week of no work, no nursing, no appointments and no worries. I can do all of them but the worries part. It just does not seem to go away.
On a good note, M-E has only one more dose of ARA-C. She is still at 1000 on her ANC. Here red blood count is dropping so we are headed to a transfusion but then we know what those are like. She will have a week of very low counts and then should bounce back. She has one dose of Vincristine and a three big nurses with big syringes on Monday the 15th and then we do the Bone Marrow Wait. We wait for her to start to produce enough good cells to being the next phase. Interim Maintenance. Treatment only every 10 days and Mondays for clinic.
It seems pretty simple at this point. Maybe I will sneak in some of that rest.
Monday, November 08, 2004
Alex arrived and Wolf has been buried in a place of honor. The Scarlet Runner beans will be especially hearty next year.
I was finally able to speak with Dad this morning. He told me he missed his friend and I Quote: "For God's Sake don't let your sister send a Res Dog!!!!!!!" I guess Sadie will have to do for a while. She and Dad have a special bond. Sadie loves to sit next to Dad's polar tech and he hates her and she does not care. It works for them.
We are all very very sad. We children will have to think of something nice to do for Mom and Dad. I guess we can suspend our "Why do our parents treat the dog better than they ever treated us sessions" for a while.
What is Absolute Neutrophil Count (ANC)?
Absolute neutrophil count, or ANC, is the real or actual number of white blood cells (WBCs) your child has to fight an infection. White blood cells work against possible bacteria, fungus or viruses that may make your child sick.
Your child's ANC will slowly rise showing that his/her bone marrow (the part of his/her body that makes white blood cells) is recovering after chemotherapy or radiation.
After chemotherapy, radiation, or a blood or marrow transplant, your child's ANC will slowly increase, showing that the new blood cells are starting to grow and mature. It is not unusual for your child's ANC to go up and down each day during the early phase of bone marrow recovery.
A normal ANC is 1500 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500. A safe ANC means that your child's activities do not need to be restricted. If your child has had a blood or marrow transplant, other parts of the immune system may take several months to recover. Ask your child's doctor about specific restrictions which may apply.
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How to calculate ANC
Calculate your child's ANC using the numbers from your child's complete blood count (CBC). The formula is:
ANC = Total WBCs x (segs + bands)
Multiply the total number of WBCs by the number of segs plus bands (the types of WBCs that fight bacterial infections).
For example, your child's WBC is 4,000, and he has 20% (.20) segs and 10% (.10) bands. Calculate the ANC as follows:
ANC = 4,000 x (.20 + .10)ANC = 4,000 x (.30)ANC = 1,200
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After chemotherapy or radiation, your child's ANC may drop as low as zero. If your child's ANC drops below 500, it is important to:
Avoid crowds and people who are sick with a cold, flu or runny nose. If your child needs to be admitted to the hospital with a fever and a low ANC, people with a cold or flu will not be able to visit your child. This is to protect your child from being exposed to possible infections.
Wash your and your child's hands carefully to reduce the risk of catching an infection from another person.
Avoid sharing utensils or cups with others when eating or drinking.
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Call your child's doctor
Call your child's doctor immediately if your child has a low ANC and any of the following signs:
A fever above 100.5°F (38°C) twice in a 1-hour period, or any single fever above 101.5°F (38.5°C). Let the physician know whether the temperature was taken under the arm or in the mouth.
Sores in the buttock area, mouth, or on his/her skin; you may notice redness, drainage, or pain and tenderness to touch
Any other signs of infection
Saturday, November 06, 2004
I don't think I can abandon the project once I have it started. I don't think a pile of unboxed zip lock bags on the table will be acceptable to even me. My rational for not completing it right now would be that it will make too much noise for a sleeping household, the drawer needs to dry and I need to do a post since I am behind. See, I am a good lawyer. I could present equally compelling arguments why I should go back in there and finish it now.
I needed to sit and collect my thoughts and plan the day. As I lit a couple of candles this morning I realized how many of my votives have given all then can give. Only the little metal "wick holder in place thingys" are still there. I think we feel like a little metal wick holder in place thingy right now. Some use left but just about useless. Everyone knows that this is along process but we didn't know how long the process would feel. It is just so, so hard.
I know I will feel better after some rest, a bit of time away and an evening at the St. Joe's Auction. My dear friend Ruth bought me a ticket for the auction and has been very firm about my presence. I know that a good time will be had by all and I need to go out more. My reserves are limited at this point. My goal this week-end is to take a long long nap on Sunday and not spend Mary-Elizabeth's IV fund.
Lori has helped a lot by being here. She is beginning to question my complaints that we spend hours and hours at the hospital. Lori has taken M-E to two of her appointments for her Ara-C and the car is not even cold when they return to come home. Lori refuses to give up her secrets on how she accomplishes this feat but then Lori is a very straightforward and determined woman. Give her a project and she will execute it.
Lori is trying to tackle the never-ending "Oh, my God where did all the laundry come from?" issue in this house. Everyone that comes here works on the laundry. Lupe does laundry for weeks and weeks. She bleaches and washes, and folds and re-washes and folds the entire time she is here. ( I complain endlessly about excessive water use and that makes Johnny mad but then I think that our role in each other's lives is to irritate each other a bit.)
Mom comes and washes for days and days and when she has the basket empty, she starts on stuff that she thinks needs to be re-washed. She digs into the basement and no quilt or flannel sheet goes untouched. She then organizes the neighbors to go to the laundry mat to use the giant machines. Alison trays also.
Lori thinks I just need to be re-trained. She explained to me that there is a "Laundry Process". A process? She even has defined steps. How can you not just love people that can break laundry down into a process. She has been trying to instruct me in this new laundry system. There is the real challenge.
1. Put the cloths in the washer. ( I knew that step but it needs to be included)
2. Transfer the cloths to the dryer.( I have that one down most of the time. When I fail, I know to leave the cloths in the washer and just do them again.)
3. Take the cloths out of the dryer. (Now I do this..........................Eventually.)
Step four is where Lori and I diverge in our methodology. I am a pile and pile again, kind of person. Lori has pointed out that dry cloths do not make good dryer covers. She suggests the next steps.
4. Fold or hang the laundry
Final and evidently the most important step:
5 Put it away.
Now that seems simple but for some reason I am genetically and completely disabled in this department. My sister Belle tried to explain to Lori that we have some sort of DSM IV disorder. Karen has been doing Belle's laundry for years. I like Belle's system better.
Well, the quiet continues. The sky is beginning to transform from dark to light, the remaining candles are doing their last best efforts and I am going to try and put away some cloths and organize my bottom kitchen drawer.
Friday, November 05, 2004
On Tuesday we took cookies to the nurses and doctors at the Hem/Onc clinic. We let them smell the cookies and let them know that if she had an ANC that allowed us to continue with treatment we would let them eat the cookies.
It worked. She had gone from 380 on Thursday to 1880 on Tuesday. I guess we would have to classify her Bone Marrow as a "Slow Starter". Once it starts and is reveved up it is great.
We were admitted to begin day "28" it was really day 36 but then with new math you can never know what adds up to what. So, up to a room. A nice room. Windows and lots of televisions so we could have network central for the election coverage. We settled in. We knew what to expect: Fluid, Zofan, Cytoxon, Arac more fluid and the Lasix and then two hours of standing by the bathroom door and then lots of sleep. We knew what to expect and were were ready.
Remember when I have said that this whole process makes me crazy because things keep changing? We plan, we anticipate,we try to trouble shoot and when you think the world will be fine it all falls apart. She was not herself in the morning. She had Zofran, Arac and then started to get sick. They gave her some medications and she slept a bit. Then she said" I am ready to go" She stood up and almost passed out and was sick again. In came the nurses, in came the doctors, in came the fellows and residents and the medical students and finally the Lady with the Alligator Purse.
More drugs and then she just moaned. That deep and intense moan that comes from a very primitive place. A place where no on can reach or help or touch. She had slipped away from everyone and everything. I hated we were at the hospital because I just want to get as close to her as I could and try and take away some of the pain and agony and absorb it. It is so hard to know that you are totally without tools, or resources or any recourse. Time, we just had to wait for everything to work. As a Mom it is so hard. I made this child, I carried her deep in a safe place and now I there was nothing I could do.
I pulled the chair/bed out and was a close to her as I could. I slept, she slept and we waited. About 4 hours later she woke up and said let's go. I had been packed and we made a hasty retreat. I guess we now have more that we can expect. Two more of these treatment.
It was good to be home. She crawled into bed, I gave her the medications she needed, skipped her shot and then waited for Lori to come. She is a former law school class mate. She flew in from Boise to help. It was great to know we would have time to catch up on things from another time and another world.
Wednesday, November 03, 2004
Tuesday, November 02, 2004
I am going to try and get us admitted to the hospital today. This is always a challenge. We are going for an ANC of 750. We shall see. Pray, Please, Lots. I am finding day 27 is not so much fun right now. It is like being stuck in a snow bank, lots of spinning wheels. Not sure when we are going to be released. Limbo you might say, Purgatory. I may have to examine how to get out of Purgatory more carefully. I did join the church that created Purgatory.
I actually love the gray this time of year. The gray of the sky when the cloud are full of rain is so refreshing. It is nice to know that everything is getting the water it needs. We need it SO much. I planted some bulbs and things are dry deep deep down. The grass looks good but the trees are in trouble.
It is sort of like M-E, she looks great right now. She has this beautiful pale freckled skin. She has a bounce to her step, she has this great "portable hair" . She has a smile that could knock anyone dead. She has a great sense of humor and a wit that just blows me away. Yet, under the surface we may still have problems lurking. Deep down we have the potential for disaster. We will never know because we are never going to let any of the bad things come back. Her lookemia could be gone or not. They are going to keep treating her until they believe it will never ever return.
May this be day 28.
Monday, November 01, 2004
She came home from an overnight with the Vehoffs and laid down on the couch and that was that. I managed to get a bit of cereal into her and she chatted with a few of the kids at the door. She wanted to "hear other people doing normal things." I could not have said it better.
She wants normal and life to be normal. I suggested that we not carve the pumpkins this year but she did not think that was a good idea at all. She was very certain that life would not be complete if I did not get up to my armpit in pumpkin guck. Three lanterns are on the front porch. Not our usual 15, nor are they very creative but they are carved and they are lit, and they were there with all the normal pumpkins on this dark and misty night.
I know what she is feeling because I feel we have somehow stepped out of life. We are in this little space that is focused on very specific tasks. There is little or no connection to the outside world. I feel like I have crawled into a space under a root and pulled the forest bits in after me. No knowing what will come along, I feel I have to have my back against the wall and watch out all the time. I don't dare fall a sleep or let my guard down. There are so many things out in the dark and misty night just ready to pounce.
Maggie called this week-end and offered to spend a few hours at the house on Sunday and let me go do some things. My first thought was that I am not sure what I would do. Movie, maybe. Go shopping, no. I have been watching my neighbor move and I am now ready to pitch everything. Go visit someone, maybe. Try and forget for a few hours. I don't know if I can. I wish I knew a way to forget. See, Dark and Misty nights..... bring out the dark and misty feelings.
I did not let the time slip by. A nap, a bit of quilt finishing and then we went out to a real dinner ,with salad,a drink and everything. It was nice.
I decided that I have to have some plans and ask people for some of their time and figure out what I want to do if time avails itself.
Plan: something that you decide to do in the future. Something people with type A personalities do to excess. It makes them very grumpy if the plan falls through. I will try to re-enter the world of the normal.
I long for a plan on this Dark and Misty Night.