Hello Everyone,
As you may have noticed, posted in about 4 months on either of my blog sites. I owe you all a big Mea Culpa for the lack of blogs and updates lately. For those of you that have been calling, I owe you a really big "sorry" as well. I promise I have your messages and will be calling you as soon as I can!
Here is what is going on, I hope it explains my lack of follow up lately:
Firstly, I am still in chemo. I looked at my calendar today and realized I have been in chemo for 20 months straight. Chemo treatment requires that I spend most of Monday and Tuesday at the Cancer Center hooked to an IV.
I am also teaching a couple of classes at Michael's per week and these take about 3 hours of time for each class.
Aside from these mandatory obligations, I am mostly so tired that it is hard to get out of bed. The accumulation of twenty months of chemo treatments has finally hit me full force and I am beyond exhausted. If you have been in cancer treatment before, you know that cancer exhaustion is unlike anything else you have ever experienced. I have many days where I just can't move. Plus anything that stimulates my brain in the wrong way can also ramp up the exhaustion. It is supremely hard for me to hold a conversation right now- I get so tired!!! I am also bothered by lights, smells, tastes, sounds, and crowds, pretty much anything that would make me a normal social person! My energy levels lately sort of work like a bank. I have a minimum amount of energy to draw from each day, if I take more than my minimum- I pay for it later!!!
On top of all the treatment stuff, my blood work numbers are going the wrong way and the Nurses think that the Taxol chemotherapy may no longer be working for me. I am actually very OK with this as I am about at my wit's end with traditional treatments anyway! I will be discussing all of this with my Doctor in two weeks and in the meantime I am going to set up a second opinion and see if I can get into a non- traditional FDA study in Houston as well. I'll post what I find out as soon as they have anything meaningful to tell me.
The amazing Miss Elizabeth and my wonderful husband, Oscar, are the only reason that the house is not falling down around my ears. And I am losing Elizabeth this week. She is moving off to California on Thursday ( if any of you know of a good personal assistant who wants to work a few hours a week let me know!) . I am not sure how I will manage without some house hold/health help.
Plus in the last four weeks we have had visitor after visitor, and only some of them were planned for. We really enjoyed our visit with cousins Mark, Heather and Heidi. And then just a few days later, my Father and Roberta surprised us with a week long visit. I loved having everyone here but, I am currently paying for it in exhaustion.
Basically, due to all this treatment stuff I am completely out of touch and not able to do much about it. I will tell you that if you really need to reach me or check on us, I do have an easier time with email. The simplest address to find me at is tararobinson@sc.rr.com. Of course, you can also call and check in with Oscar and he will relay me anything you need!
Be assured that I love and appreciate the cards, calls, and help all of you give me and I miss you. Hopefully the exhaustion and chemo brain stuff will pass soon and I will be back to normal.
Tuesday, August 12, 2014
Saturday, April 26, 2014
Survivor's Blog April 26, 2014- Shave your head if you have to have chemo!!!! ProStyles will do it for a special price....
The first thing I tell new cancer patients is always shave your head if you have to have chemo. If the doctor tells you that your hair will fall out - go immediately to the barber and get your head shaved! The reason for shaving your head is a nasty little secret the doctors don't tell you, about 10% off all cancer patients get an infection called folliculitus when their hair starts to fall out.
When I was first diagnosed, I had beautiful long strawberry blond hair. My poor husband panicked when I wanted to just shave it and be done with it prior to chemotherapy. So I didn't shave it.When it started to fall out my head started to hurt like crazy, then it started to burn, and after the burn came bloody little blisters. At that point, my hair had to come off and I had to cut over those awful blisters. It was one of the worst cancer side effects I have had in three years. So shave your head and prevent the whole problem.
The first time I had my head shaved I went to a salon and had them shave my head. Of course, stylists in a women's salon don't use their clippers that much and the side effect of this for me was a burnt scalp. Plus I did not feel so good when I left, it was clearly harder for the stylist to shave my head than it was for me to have it shaved.
In January of 2014 I found out I would have to shave my head once again. This time I got smart and went to the men's barber shop. I figured who has more experience with clippers than a Barber who does fades all day long?
I was very lucky that we had a new Barber Shop, ProStyles, open up right around the corner from the house. Jay was kind enough to shave my head. It was very cool because he did not make a big deal out of it , he just gave me a super smooth head!
I had to go back and get it re shaved this week, and Jay once again did a wonderful job.
The guys at the shop are running an ongoing special for cancer survivors, go on in and get a shave and they will reduce the cost to $10.00
Give them a call at (803) 732-1411 to schedule an appointment, they also take walk ins.
When I was first diagnosed, I had beautiful long strawberry blond hair. My poor husband panicked when I wanted to just shave it and be done with it prior to chemotherapy. So I didn't shave it.When it started to fall out my head started to hurt like crazy, then it started to burn, and after the burn came bloody little blisters. At that point, my hair had to come off and I had to cut over those awful blisters. It was one of the worst cancer side effects I have had in three years. So shave your head and prevent the whole problem.
The first time I had my head shaved I went to a salon and had them shave my head. Of course, stylists in a women's salon don't use their clippers that much and the side effect of this for me was a burnt scalp. Plus I did not feel so good when I left, it was clearly harder for the stylist to shave my head than it was for me to have it shaved.
In January of 2014 I found out I would have to shave my head once again. This time I got smart and went to the men's barber shop. I figured who has more experience with clippers than a Barber who does fades all day long?
I was very lucky that we had a new Barber Shop, ProStyles, open up right around the corner from the house. Jay was kind enough to shave my head. It was very cool because he did not make a big deal out of it , he just gave me a super smooth head!
I had to go back and get it re shaved this week, and Jay once again did a wonderful job.
The guys at the shop are running an ongoing special for cancer survivors, go on in and get a shave and they will reduce the cost to $10.00
Give them a call at (803) 732-1411 to schedule an appointment, they also take walk ins.
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| What is left of my hair before... |
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| Myself and Jay, The Barber, after my shave.... |
Monday, April 21, 2014
Survivor's Blog April 21, 2014- Has anyone else had a rash from Taxol?
Hello Everyone-
For those of you who have not heard from me lately , this is why. I have been reacting to the Taxol for the past few weeks. I am getting a rash on my arms that makes the skin pop open and bleed. It is itchy too. Mostly though, the reaction fires all my nerves and makes every nerve ending feel like I am on fire. I feel as if I poured gasoline on myself and lit a match. When the reaction subsides a bit, I am so tired from pain that all I can do is go to bed.
So far the doctors have not figured out what is happening and they have no idea what to do to stop it. I am using Tea Tree Oil and a prescription cream for Eczema that are helping a bit. I think the problem is my immune system is just overwhelmed and I am paying the price in allergies and exhaustion.
Do any of you cancer patients have any help for me? Have you had this rash? If so, how did they treat you? You can send me a message at taraleed@live.com
Have a great day-
Tara
For those of you who have not heard from me lately , this is why. I have been reacting to the Taxol for the past few weeks. I am getting a rash on my arms that makes the skin pop open and bleed. It is itchy too. Mostly though, the reaction fires all my nerves and makes every nerve ending feel like I am on fire. I feel as if I poured gasoline on myself and lit a match. When the reaction subsides a bit, I am so tired from pain that all I can do is go to bed.
So far the doctors have not figured out what is happening and they have no idea what to do to stop it. I am using Tea Tree Oil and a prescription cream for Eczema that are helping a bit. I think the problem is my immune system is just overwhelmed and I am paying the price in allergies and exhaustion.
Do any of you cancer patients have any help for me? Have you had this rash? If so, how did they treat you? You can send me a message at taraleed@live.com
Have a great day-
Tara
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| Rash from Taxol after a few days of healing...... |
Tuesday, April 15, 2014
Survivor's Blog April 15, 2014- Chemo Update....
As you all may have noticed, I have not been blogging lately. It is a beautiful spring here in South Carolina but, I have not taken advantage of it. As much as I would like too write, the effects of chemo have made it very hard to write anything concise and coherent. Unfortunately, I am also having trouble talking and listening ( ironic isn't it). I am sorry I have been out of touch with so many of you.
Here is the good news, yesterday when I got my blood work my CA125 number is now almost normal, I am at 44.5 and a normal woman's CA125 is 35 or under. This means that I should be able to leave chemo treatments behind shortly.
Meanwhile, I am having a reaction to the current round of chemo - so as soon as I am not hooked to an IV pole today I will be home in bed.
A big thank you to everyone for their kind cards, letters and phone calls in the past few weeks. Hopefully, things will be back to normal soon!!
Here is the good news, yesterday when I got my blood work my CA125 number is now almost normal, I am at 44.5 and a normal woman's CA125 is 35 or under. This means that I should be able to leave chemo treatments behind shortly.
Meanwhile, I am having a reaction to the current round of chemo - so as soon as I am not hooked to an IV pole today I will be home in bed.
A big thank you to everyone for their kind cards, letters and phone calls in the past few weeks. Hopefully, things will be back to normal soon!!
Sunday, March 2, 2014
Survivor's Blog - March 2, 2014- Creative Scarf Tying, use them to cover your infusion port...
Today chemo is kicking me and not the other way around. I know I will be fine in an hour or two when my energy kicks in. In the meantime, I thought I would share with all of you a video from Nordstrom. If you are a cancer survivor you are always looking for creative ways to cover your infusion port and Nordstrom's produced a beautiful video on creative scarf tying. The link is here if you would like to check it out.
https://www.youtube.com/watch?feature=player_detailpage&v=-ExVRCJ0Jrw
It is a good one whether you have a port or just love scarves.
https://www.youtube.com/watch?feature=player_detailpage&v=-ExVRCJ0Jrw
It is a good one whether you have a port or just love scarves.
Saturday, March 1, 2014
Survivor's Blog - March 1, 2014- Meet my new brave friend Julie G!
Hello Everyone-
I am having trouble getting anyone to write anything for my blog, and I am too pooped to do so. Today I am going to change gears and introduce you to a really inspirational person I met at chemo a couple of weeks ago. Julie G. is also an ovarian cancer patient and she is so brave and kick ass about all of this. We were excited to meet each other in chemo because it is really rare to meet an ovarian cancer under the age of 65. Unfortunately, I think it is because many younger folks like us, are not diagnosed until the disease is just too far along! Those of us who are young and surviving need to make it our mission for everyone we know to be aware of Ovarian Cancer and its amorphous symptoms.
Here is how Julie decided to let everyone know about her diagnosis:
She went and had her son ( a tattoo artist) give her this cool Ovarian cancer ribbon tattoo.
I am having trouble getting anyone to write anything for my blog, and I am too pooped to do so. Today I am going to change gears and introduce you to a really inspirational person I met at chemo a couple of weeks ago. Julie G. is also an ovarian cancer patient and she is so brave and kick ass about all of this. We were excited to meet each other in chemo because it is really rare to meet an ovarian cancer under the age of 65. Unfortunately, I think it is because many younger folks like us, are not diagnosed until the disease is just too far along! Those of us who are young and surviving need to make it our mission for everyone we know to be aware of Ovarian Cancer and its amorphous symptoms.
Here is how Julie decided to let everyone know about her diagnosis:
She went and had her son ( a tattoo artist) give her this cool Ovarian cancer ribbon tattoo.
Then she shaved her head and showed up to treatment BALD and PROUD!
I must say it was nice to have company.
JULIE you ROCK and you will inspire so many people to keep on keepin on!
To learn more about the symptoms of Ovarian Cancer you can go to:
Friday, February 28, 2014
Survivor's Blog- February 28, 2014- Some information about Locks of Love....
Hi Everyone-
Several of my friends have been generous enough to give up their "normal" hairstyles and grow their hair out long to donate to "Locks Of Love". If you are not familiar with them, Locks of Love accepts donated hair to make wigs for children with cancer or other diseases that involve hair loss. Any hair that they cannot make into wigs they sell to finance the program.
The thing folks don't know is that there are some very specific guidelines for hair donation that you need to follow. The link below has all of them, they are very specific about what kind of hair they can accept. The guidelines below are just a small part of the list. If your hair is bleached, treated , or permed you need to check the current guidelines on their site. You can follow this link or print the guidelines I pulled from their site:
http://www.locksoflove.org/donate.html
The photos are of my lovely sister in crime, Jennifer T., who took them yesterday after she got a rocking new hairdo!!! Hope she doesn't mind being blogged out to the world! She has no idea how much we cancer survivors appreciate her bravery and her donation.
Several of my friends have been generous enough to give up their "normal" hairstyles and grow their hair out long to donate to "Locks Of Love". If you are not familiar with them, Locks of Love accepts donated hair to make wigs for children with cancer or other diseases that involve hair loss. Any hair that they cannot make into wigs they sell to finance the program.
The thing folks don't know is that there are some very specific guidelines for hair donation that you need to follow. The link below has all of them, they are very specific about what kind of hair they can accept. The guidelines below are just a small part of the list. If your hair is bleached, treated , or permed you need to check the current guidelines on their site. You can follow this link or print the guidelines I pulled from their site:
http://www.locksoflove.org/donate.html
HOW TO DONATE:
- 10 inches measured tip to tip is the minimum length needed for a hairpiece.
- Hair must be in a ponytail or braid before it is cut.
- Hair must be clean and completely dry before it is mailed in.
- Place the ponytail or braid inside of a plastic bag, and then inside of a padded envelope.
- If you wish to receive an acknowledgment for your hair donation, please fill out the hair donation form, or write your name and e-mail address or mailing address on a full size separate sheet of paper and include inside the envelope. We cannot acknowledge donors who do not send their name and address according to these instructions.
- All hair donations must be mailed to Locks of Love at:
234 Southern Blvd.
West Palm Beach, FL 33405-2701 - **IMPORTANT** When mailing your donation, please make sure that you are sending it with adequate postage. The U.S. Postal Service has notified Locks of Love that many donations are being sent without enough postage, and these packages will be returned to sender! To ensure adequate postage, please take your donation to your local post office.
- Thank you!
The photos are of my lovely sister in crime, Jennifer T., who took them yesterday after she got a rocking new hairdo!!! Hope she doesn't mind being blogged out to the world! She has no idea how much we cancer survivors appreciate her bravery and her donation.
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