Hello everyone. Mom is doing ok today. She is visibly weaker, and having a hard time eating. She thnks she is fine and her energy level is the same, but it is very obvious that she is struggling to talk and email etc. It is what she thrives on though,and what helps her coe, is contact with people. ALL OF YOU! More to come…. thanks for all of your support and prayers. They are carrying us.
Hello everyone. Mom is doing ok today. She is visibly weaker, and having a hard time eating. She thnks she is fine and her energy level is the same, but it is very obvious that she is struggling to talk and email etc. It is what she thrives on though,and what helps her coe, is contact with people. ALL OF YOU! More to come…. thanks for all of your support and prayers. They are carrying us.
Mom was pretty tired by the time I left last night around 11:30pm.
She pretty much had visitors from 7am until around 10pm. I am amazed at how she could “turn it on” when each new visitor arrived.
Then after everyone left, she went online to try and personally answer the many many emails you have all been sending.
Special note to Nichole Gould. Mom says HI and thanks you for the email, thoughts and prayers. She was very happy when I told her you had emailed me to try and reach her.
This morning was a little difficult… I am not positive on the specifics, but mom experienced heart palpitations and very low blood sugar. She didn’t sound so good when I spoke with her on the phone. She wants to come home, but they may keep her another night to make sure she is stable.
Thank you also to all those who have emailed me regarding the talk that I was humbled to give at Relay for Life last Friday. I have to give the glory to God, He wrote the words, and spoke them through me. The night is all a blur to me from 8:30pm until when I got home. Thanks be to God!
Thank you also to all who have been leaving voicemails text messages and sending emails. They are appreciated. Sometimes it is tough to know what to say in return. For someone who talks as much as I do, I find myself speechless and anxious quite a bit these days. never hopeless, but sometimes feeling helpless.
more to come…
Mom did ok through the night. Because it is taking longer to give the chemo, mom will be staying an additional night in the hospital. More to come later.
Here is info on the two chemo types that mom is receiving:
CPT-11
irinotecan
Trade Name(s):
Camptosar, Camptothecan-11, CPT-11
Type of Drug:
Irinotecan belongs to a general group of chemotherapy drugs known as topoisomerase inhibitors. It is used to treat colon and rectal cancers.
How Drug Works:
Irinotecan stops the growth of cancer cells by preventing the development of elements necessary for cell division.
How Drug Is Given:
Irinotecan is given by an injection in a vein over 90 minutes weekly for 3 weeks and then 1 off, or once every 3 weeks. The dose depends on your size, your age, whether you have had radiation to your abdomen/pelvis, how well your liver is working, your blood counts, and whether you have had any side effects such as diarrhea.
Precautions:
While you are being treated with irinotecan, and after you stop treatment, do not have any immunizations (vaccinations) without your doctor’s okay. Try to avoid contact with people who have recently taken the oral polio vaccine. Check with your doctor about this.
Irinotecan may lower your blood counts (white blood cells, red blood cells, platelets). Your doctor will check your blood counts before and after each treatment to see how it affects your blood counts. Your doctor or nurse will give you specific instructions if your blood counts are low.
Irinotecan can decrease your white blood cell count, especially 21 days after the drug is given. This can increase your risk of getting an infection. Report fever of 100.5°F or higher, or signs of infection such as pain in passing your urine, or coughing, and bringing up sputum.
Irinotecan can decrease your platelet count. This can increase your risk of bleeding. DO NOT take any aspirin or aspirin–containing medicines. Report unusual bruising, or bleeding such as nosebleeds, bleeding gums when you brush your teeth, or black, tarry stools.
During the drug infusion, tell your nurse if you start sweating, have abdominal cramping, or diarrhea. Your nurse will give you a special medicine to stop this reaction.
Irinotecan can cause nausea and vomiting. Ask your doctor or nurse to give you medicines to prevent or lessen this.
Side Effects:
Common Side Effects:
Nausea
Vomiting
Decreased white blood cell count with increased risk of infection
Sweating, abdominal cramping, or diarrhea during infusion
Diarrhea occurring the day after treatment, which can be severe
Tiredness (fatigue)
Anemia
Less Common Side Effects:
Flushing during infusion
Rare Side Efects:
Decreased platelet count with increased risk of bleeding
cisplatin
Trade Name(s):
Platinol
Type of Drug:
Cisplatin is a platinum compound chemotherapy drug that acts like an alkylating agent. It is used to treat testicular and ovarian cancers that have spread. It is also used to treat several other cancers, such as lung cancer.
How Drug Works:
Cisplatin stops the growth of cancer cells, causing the cell to die.
How Drug Is Given:
Sometimes you will be given other medicines that will help flush the medicine out quickly through the kidneys. You will also get a salt solution by vein and medicine to prevent or stop nausea or vomiting. Before and after the medicine you should drink 2 to 3 quarts of fluid a day (an 8 oz. glass of water or fluid every hour while awake) to protect your kidneys. Your doctor will check your kidney function before giving the medicine. Your dose depends upon the type of cancer being treated, your size, and how well your kidneys are working.
Precautions:
Cisplatin can cause kidney damage. This is prevented by checking your kidney function before you receive the drug, giving you extra intravenous fluids, and asking you to drink extra fluid after the drug is given. This extra fluid helps to flush the medicine out of your system and protects your kidneys.
Cisplatin also causes your red blood cell count to decrease over a few months’ time. Cisplatin can lower the platelet count, which can increase your risk of bleeding. DO NOT take any aspirin or aspirin–containing medicines.
Side Effects:
Common Side Effects:
Kidney damage
Decreased blood levels of magnesium, potassium, and calcium
Nausea
Vomiting
Taste changes including metallic taste of foods
Sensation of pins and needles in hands and/or feet caused by irritation of nerves
Fetal changes if becoming pregnant during treatment
Less Common Side Effects:
Tiredness (fatigue)
Decreased white blood cell count with increased risk of infection, if given in high doses or with radiation therapy
Decreased platelet count with increased risk of bleeding if given in high doses or with radiation therapy
Loss of appetite
Hair thinning
Diarrhea
Rare Side Efects:
Severe allergic reaction
Hearing loss
Difficulty walking
Chest pain and heart attack
Thanks to uncle Johnny for capturing this special moment. My dance with mom to Wind beneath my wings.
Dear Family and Friends,
First of all, my deepest and most heartfelt gratitude to all of you who were at the Relay in person and in spirit. .Your love, support and thoughtfulness is most appreciated and truly empowered me and my whole family!
My sppirits were lifted beyond belief, and I felt very good all evening lasting through midnight. I was very exhausted more emotionally than physically but what a beautiful, glorious feeling and unforgettable experience !
I am right now at Swedish Hospital and receiving my first chemo which will be repeated every week x 3 then one week off. Then for three more sessions. After the second month, we will repeat the Petscan and hopefully there is some positive change . If not then we need to change to another protocol. We have been told that this cancer is very aggressive, and that these protocols can work, but that the success rate is small.
Please pray for successful results. It looks like we are needing a miracle.
I am doing just fine, feeling very good and I thank the Lord for every day without pain! He is with me and He has been with me and I am at peace, full of hope and faith!
I enjoy visits from people . Just please be sure that you have not been exposed to anyone who is sick, or are feeling any symptoms yourself. If you visit, please follow simple rules of handwashing before you come to me. BUT I welcome your visits as they do lift my spirits up ! Please, just call ahead so I will know how I am feeling due to the side effects which are expected to come.
