There will be several posts that represent updates she sent family and friends via email. It allows us a glimpse of heart struggle and her relentless search for answers.
Thanks Diane... xo
Disclaimer: This is a true story. This represents the writer’s opinion only and should not be used as a medical guide. The writer does not claim that medical information contained in this story is completely accurate, current or error free. The writer is not responsible for direct, indirect, incidental, consequential or any other damages arising out of or in connection with the information provided in this story. Please consult your physician for all medical procedures, advice, plan of actions and tests.
I signed up for three clinic studies yesterday. I am going to say YES to any study they ask me to do. One, I want this stopped so my future granddaughters do not have to deal with this and two they are going to be watching me for 10-15 years and I want to be around to be watched.
The day started out in surgery at 8:00AM when I had a port placed in my chest so that they can give me the chemo without injecting it in my veins. You know, I HATE needles. Knowing I will not have to have needles for the next year will be a blessing. I was more scared of the surgery than the chemo, but it was not bad at all and after I signed up for all these studies, I had 8 tubes of blood drawn from the port. I would have been on the floor passed out before they got to number 5 if they had to take it from a vein in my arm. We didn’t leave the hospital until almost 7 O’clock. Chemo took over 5 hours.
The three studies I signed up for are:
One the chemo drug I am now taking. This study is only for lymph node negative patients. If I was node +, my chemo treatment would have been 4 rounds of doxorubicin (Adriamycin - A) with cyclophosphamide (Cytoxan - C), and 4 rounds of Paclitaxel (Taxol) T.
So, this clinic study wants to see if node negative women like me who do not need aggressive chemo treatments will do better with A or T as dose dense standalone chemo treatments for 4 or 6 rounds. My randomization gave me 6 rounds (12 weeks) of Taxol (T).
I was very happy with my randomization because A is very hard on you heart and is the chemo that really makes you nauseated. Taxol is hard on your fast growing cells like hair and nails but they grow back. Taxol is also used more commonly for advanced Cancers that have spread. I was scared to be on Adriamycin because I will be taking Herceptin for a year after radiation stops. This is an antibody drug that can be hard on you heart but has no real side effects.
Herceptin is a fairly new drug and the long term effects on your heart are not yet fully known. If Herceptin had been around 10 years ago when my sister died of Breast Cancer she may still be with us.
The second clinic study I signed up for is DNA testing. All they need from me is my blood. This study is doing DNA and environmental studies on women with breast disease.
The third study is more of a touchy feely study to see how committed couples feel and support each other during treatment. Dave was not crazy about this but was willing to help as it is important to me and I think we can be helpful to other couples who do not know how to talk to each other and can not deal with this beast. This study will entail me calling in for 30 days to report how I am feeling and how Dave is supporting me. We will also attend biweekly education sessions to discuss Breast Cancer. We will also have sessions where we openly discussed issues that are bothering us as related to the Cancer diagnosis. We will repeat these open sessions in six months.
Tuesday, January 10, 2006 10:00 AM
I got the best news yesterday that I have had so far. My genetic testing results came back yesterday and they were negative of all genetic mutations. What this means is no further surgery is needed. If I had been positive for genetic mutations, I ran a high risk of reoccurrence so a double mastectomy and the removal of the ovaries would be recommended. Now I do not have to face that decision. I was tested because my sister and grandmother both died young from Breast Cancer. My sister was diagnosed at 37 and died at 40 and my grandmother was diagnosed at 43 and died at 53.
Last night, I finally slept the whole night without medication assistance. The chemo regiment I’m on is known for joint pain. I’ve had cramping in my lower back and legs. Friday night I swore I was going though labor again. The pre chemo meds also have steroids in them so insomnia is quite common during chemo. I’ve been wide awake at 3 in the morning and 5 in the morning. Hey, only 5 more treatments. I can do this! My next round of chemo is next Tuesday, January 17th. I am scheduled for a bone scan that day also.
Genetic testing: In 1990, the BRCA 1/2 genes, which are tumor-suppressor genes linked to genetic Breast Cancer, was discovered, and in 1991 scientists found that the gene was linked with genetic ovarian Cancer, too. The families who have this gene tend to have a high incidence of Breast Cancer, often at a young age, as well as ovarian Cancer.
Thursday, January 19, 2006 4:41 PM
Had another piece of great news today. On Tuesday, I had a bone scan performed. The bone scan showed no sign of Breast Cancer in my bones. This was a fairly easy scan. They inject you with a shot of radioactive die and then you wait two hours and then the machine takes pictures of your skeleton. Dave stayed in the room so it was a safe procedure. We had fun playing with the traces I made on the machine while we were waiting for the technician to return after the tests were completed. The bones are one of the most common places for Breast Cancer to spread. The Lungs and the liver are also common places. So far, NO secondary Cancers.
My second round of Chemo was on Tuesday (only 4 more rounds to go) and I am really tired but do not have many cramps yet. It usually gets worse on the 3rd to 5th day.
I am close to being hairless. I had my hair cut pixie short last week but my hair is coming out now very freely. I guess I’m gonna ask Dave to buzz it off tonight. I have plenty of scarves and hats and I knew this was coming. I actually kept my hair a little longer than average. Its funny, my head is really sore to the touch, it feels like little gremlins are pulling my hair out all over.
Well, Dave buzzed it way down and now I am the opposite of a bald guy. I have short hair (not much) on the top and none on the sides. Hey, you know it doesn’t really bother me. Scarves and hats are fun. I go around the house bald and don’t care. Really thought I would not want anyone to see me bald headed. I thought I would look like an Alien.
Wednesday, February 01, 2006 12:48 PM
Third chemo treatment was yesterday all went well. 3 down 3 more to go. I am really tired today. My White blood counts are down now. The optimum range for your white blood count is 4-5.2; mine is 3.2. My Absolute Neutrophill count (ANC) is also low. The optimum range for your ANC count is 2 to 7.5; mine is 1.4. This means I am at a high risk for infection and I need to avoid crowds and anyone who has been sick. I must stay away from raw meats and the litter box etc. The term for my condition is Neutropenia. Currently my counts show only a mild case.
I also joined another study group yesterday. This one is how patients spend them time during chemo and they will be given a lap top during the time to surf the web or write my Cancer story.
Thursday, March 02, 2006 9:59 AM
Fourth Chemo was yesterday and so far it was the easiest one yet. My White blood count it still down; however my Absolute Neutrophill Count (ANC) was up a little. This time it was 1.6. Two more chemos to go and I am done. Dave, David, Kim, Charlie and I have along weekend scheduled for the beach to celebrate the end of Chemo and David’s 21st birthday. Thank you all again for the cards and your concerns. I feel the power of your prayers
Thursday, March 02, 2006 9:59 AM
Had my second to last Chemo on Tuesday. The last round was one of the worst I have had. I was tired beyond the first week and had the tingles in my feet. I actually had a day where I had to go back to bed. I have been trying hard not to do that so I can keep my strength up.
So far this last round has been OK, but then the first two days are usually good. The first Fridays and the first weekend are the worst days. My white blood count although still not within normal range is up a lot from last time. It is now 3.6. Normal range is 4.5 – 11. But my ANC or absolute Neuts is the number that the doctors are most concerned with and this is now within range. It is 2.1 and the desired range is 2.0-7.5.
Absolute Neutrophil Count (ANC) is a test used to measure the amount of WBCs you have to fight infections. White Blood cells (WBCS) - There are several different types of white blood cells, each with their own function in protecting the body from germs. Three major types include: neutrophils, monocytes, and lymphocytes. Neutrophils are the same cells as neuts, granulocytes, polys, or PMN's (just different names). Neutrophils kill most regular bacteria. Monocytes kill germs such as tuberculosis. Lymphocytes are responsible for killing viruses and for overall management of the immune system. Lymphocytes recognize foreign material and increase the body's resistance to infection. WBCs play a major role in fighting infection. Infections are therefore more likely to occur when there are too few normal WBCs in the body.
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