Well, my hair is finally coming out. I had gone to Supercuts last week to get a real short pixie cut and went back again today to finish the "do". It feels strange to have a head of blonde fuzz, sort of Annie Lennox revisited here, only not orange. The only thing was the other patrons were all men and seemed a little disgusted with my "look". Well, sorry.
I feel OK though, because it's falling out and becoming annoying to manage. I was so fortunate that on this past Monday, I was able to receive two free wigs from the SCCA. I now have a very cute auburn bob cut and a conservative pixie blonde wig. I was going to get a longer blonde or red wig, but to be honest, I don't want to hassle with the possibility of the wig being crooked or out of place. Short styles will be easier to manage.
I also have a few beautiful scarves and hats, some compliments of Tammy Krikorian Gabel, thanks again. I feel like this transition to the "fuzzy look" is important. Sort of a rite of passage. Now people will know I have cancer and I don't have to explain myself all the time.
I am trying to walk a little more each day, but that is slow. Thank goodness mom has a treadmill. Not sure if I will walk today as the hair ordeal and walking from the parking space to the shop entrance seems like enough for today.
Tomorrow I meet a new primary doctor for the first time. I hope that visit goes well.
So today I am grateful for the compassion of a very nice stylist and thank God for all that He gives me. My hair will grow back again someday. The most important thing is being here on this earth, to appreciate my family and friends, and the beauty all around.
Love,
Denise
CDC Symptom Diary Card
Tuesday, November 03, 2009
Friday, October 30, 2009
ex landlord a crook
Funny thing is that some people could care less about if you have cancer or not. This is a note about my former landord Eric, in Folsom. I moved from Folsom to Seattle on September 30th. During August and the last 5 days in September, I needed help from family, and they had to stay with me. Eric gave us permission and never accepted money when offered. I guess he socked it to me in the end.
My brother flew out the 25th and drove my packed car to Seattle the next day. He stayed one night. My sister arrived the 26th and helped me wrap up my donations, packing for Craig's car and cleaning. We left the place spotless. Being the only female in a house with two other males, I was the one who cleaned. My sister worked her tail off to help with the very demanding transition while at the same time I had daily doctor visits, chemo and errands galore.
To say the least, the move about killed us all.
Well, for the first few weeks in August, my sister or my aunt had to stay to help me because I could barely get out of bed. I needed help showering, could not go downstairs for meals etc. AND, for one week while my aunt was here, we had to stay at a hotel because Eric (lanlord) had friends in from out of town. We offered Eric a little seed money to cover extra utilities. My mother even paid for helpers at home after family left, and they helped me with the house. The guys never lifted a finger to clean the house or help me at all while I was recovering. I was a bother to them and made them uncomfortable because of the type of surgery I had. There was nothing I could do to make them feel more comfortable with my surgery.
When I moved out, my key was under the mat, the fridge was stocked with good food and the house was spotless. I left Eric a note with my new address, told him the key was under the mat, and asked him to mail me my deposit to my address in Seattle. I had already changed my address with the post office.
Well, I gave him the legal 3 weeks, no response, no deposit. A few days ago I sent him a text and he said that because of all the issues and a leaky toilet, he was going to keep my deposit. He said he had some mail for me.
The handle on the toilet needed tightened, that's all there. How ridiculous.
So I am feeling totally taken advantage of. We did offer to give him a few bucks for the invonvenience of family staying, but he refused to accept it. He just said "get better, that's all I care about". Well he is a true liar.
Before my surgery, Eric insisted that I get family to help me because he didn't sign up for this problem. He offered the second room to them. So for him to keep my deposit is literally lowbrow and seedy. If he would have asked for part of the deposit to cover that room, I would have gladly given it to him.
What bothers me truly is that there was no conversation. He just took my deposit, and there is not a "blank' thing I can do. It is criminal.
Some people really don't care if you are sick or not. Hard lesson to learn. I am not asking for special treatment because I have cancer, but to keep my deposit because he knows I am incapable of defending myself is abominable. I learned my lesson here, and it's a shame because the bills are starting to come in. I could have used that, but it will come from another place.
I have to believe that nothing is random, there is a reason for everything that happenes. A window will open, I have hope.
For now, really just needing to tell the story.
Love you all.
My brother flew out the 25th and drove my packed car to Seattle the next day. He stayed one night. My sister arrived the 26th and helped me wrap up my donations, packing for Craig's car and cleaning. We left the place spotless. Being the only female in a house with two other males, I was the one who cleaned. My sister worked her tail off to help with the very demanding transition while at the same time I had daily doctor visits, chemo and errands galore.
To say the least, the move about killed us all.
Well, for the first few weeks in August, my sister or my aunt had to stay to help me because I could barely get out of bed. I needed help showering, could not go downstairs for meals etc. AND, for one week while my aunt was here, we had to stay at a hotel because Eric (lanlord) had friends in from out of town. We offered Eric a little seed money to cover extra utilities. My mother even paid for helpers at home after family left, and they helped me with the house. The guys never lifted a finger to clean the house or help me at all while I was recovering. I was a bother to them and made them uncomfortable because of the type of surgery I had. There was nothing I could do to make them feel more comfortable with my surgery.
When I moved out, my key was under the mat, the fridge was stocked with good food and the house was spotless. I left Eric a note with my new address, told him the key was under the mat, and asked him to mail me my deposit to my address in Seattle. I had already changed my address with the post office.
Well, I gave him the legal 3 weeks, no response, no deposit. A few days ago I sent him a text and he said that because of all the issues and a leaky toilet, he was going to keep my deposit. He said he had some mail for me.
The handle on the toilet needed tightened, that's all there. How ridiculous.
So I am feeling totally taken advantage of. We did offer to give him a few bucks for the invonvenience of family staying, but he refused to accept it. He just said "get better, that's all I care about". Well he is a true liar.
Before my surgery, Eric insisted that I get family to help me because he didn't sign up for this problem. He offered the second room to them. So for him to keep my deposit is literally lowbrow and seedy. If he would have asked for part of the deposit to cover that room, I would have gladly given it to him.
What bothers me truly is that there was no conversation. He just took my deposit, and there is not a "blank' thing I can do. It is criminal.
Some people really don't care if you are sick or not. Hard lesson to learn. I am not asking for special treatment because I have cancer, but to keep my deposit because he knows I am incapable of defending myself is abominable. I learned my lesson here, and it's a shame because the bills are starting to come in. I could have used that, but it will come from another place.
I have to believe that nothing is random, there is a reason for everything that happenes. A window will open, I have hope.
For now, really just needing to tell the story.
Love you all.
Friday, October 23, 2009
cover your cough
Well, I spoke too soon. Here I thought I was on a clean path of relief until next week's chemo and then I was in the ER two nights ago. I think it started on Tuesday when someone coughed in the clinic and didn't cover her mouth. I know that sounds paranoid, but it's like I "knew" it right at that second in time.
She was a very distressed older female who was in the clinic for the first time. I had been sent to the 3rd floor because I had excruciating abdominal pain, and wanted to talk to one of my doctor's nurses. I have had abdominal pain since surgery, and it has recently intensified. I was and still am worried about either an ulcer or something being wayward with my abdominal port. So I had just received my neupogen shot and was waiting in the lobby of the 3rd floor clinic, and this woman and her friend came in all flustered. They had not taken a moment to be screened for colds/flu downstairs. Well, one just coughed without covering her mouth and it was if I could feel the blanket of "flu" cover me.
The receptionist immediately called her to the desk and screened her and gave her info on precautions. I can't be angry, it just "happened". But it is a lesson for us all. It's so easy for me to get sick, but we are all vulnerable.
Well, that night I had formed a slight headache, but on Wednesday morning I woke up with migrain level head pain. For the record, I never get headaches, just not my deal. I get stomach problems and joint problems, but have been fortunate as far as headaches go. So of course I was doubly miserable because I still had the super intense abdominal pain and now a headache from down under. I was in bed all day, unable to eat.
My thermometer was not working well, and finally at 11pm I asked mom to borrow her thermometer. Temp was 101.4. I panicked a little, took a tylenol, and it went down a bit. The resident on call said to go to the ER, so my poor sister and mom had to be with me in the ER until almost 5am Thursday morning. So after being up all day, my mom and sister entertained themselves watching infomercials on hard plastic chairs, eating vending machine chex mix and laughing at me when I received my pain killers. The IV nurse (guy) was excellent. He didn't want to use the central line/port already in my body, but when he started the IV, he was quick and accurate. No bruising.
Now I am on Tamiflu, tylenol, and lots of fluids. Still have stomach pain. Still running a slight temperature, but it's not over 101. I am now on a softer diet, and have been referred to a nutritionist.
My sister actually got back home at 5:30 am, maybe napped, took kids to school, volunteered at Addie's school, took a nap, and went to work on an order for her Savvywraps! Yeah for her. Amazing energy!
I love you Mom and Mandy, thank you!!!!
And also thank you to Tammy Gabel today for sending me some beautiful scarves. I will put them to good use, it was a very thoughtful gift. Thank you!!
I received a note from my new church in Seattle, and look forward to developing a relationship with members of that community too.
In spite of all the pain, I still feel very lucky. I need the pain to go away, because I do not know how I will function and work later next year. It will subside, just not as fast as I'd like.
Hope all of you are well and thank you for your prayers.
Love,
Denise
She was a very distressed older female who was in the clinic for the first time. I had been sent to the 3rd floor because I had excruciating abdominal pain, and wanted to talk to one of my doctor's nurses. I have had abdominal pain since surgery, and it has recently intensified. I was and still am worried about either an ulcer or something being wayward with my abdominal port. So I had just received my neupogen shot and was waiting in the lobby of the 3rd floor clinic, and this woman and her friend came in all flustered. They had not taken a moment to be screened for colds/flu downstairs. Well, one just coughed without covering her mouth and it was if I could feel the blanket of "flu" cover me.
The receptionist immediately called her to the desk and screened her and gave her info on precautions. I can't be angry, it just "happened". But it is a lesson for us all. It's so easy for me to get sick, but we are all vulnerable.
Well, that night I had formed a slight headache, but on Wednesday morning I woke up with migrain level head pain. For the record, I never get headaches, just not my deal. I get stomach problems and joint problems, but have been fortunate as far as headaches go. So of course I was doubly miserable because I still had the super intense abdominal pain and now a headache from down under. I was in bed all day, unable to eat.
My thermometer was not working well, and finally at 11pm I asked mom to borrow her thermometer. Temp was 101.4. I panicked a little, took a tylenol, and it went down a bit. The resident on call said to go to the ER, so my poor sister and mom had to be with me in the ER until almost 5am Thursday morning. So after being up all day, my mom and sister entertained themselves watching infomercials on hard plastic chairs, eating vending machine chex mix and laughing at me when I received my pain killers. The IV nurse (guy) was excellent. He didn't want to use the central line/port already in my body, but when he started the IV, he was quick and accurate. No bruising.
Now I am on Tamiflu, tylenol, and lots of fluids. Still have stomach pain. Still running a slight temperature, but it's not over 101. I am now on a softer diet, and have been referred to a nutritionist.
By the way, if you have cancer and you go to the ER with a headache, they automatically do a CT Scan of your head. Can't wait to see that bill. Also if you go to the ER and have abdominal pain, they automatically do a pregnancy test, even if you tell them you had a hysterectomy. Crazy, it's part of their panel of tests, and I don't want to pay for that either.
I am so grateful to my mom and Mandy for taking me to the ER and making that whole ordeal bearable. The staff was professional and nice. My physician looked more like a lumberjack than anything else, and he was the coolest ever. They were all so nice and laid back, and treated us with respect. What a change!My sister actually got back home at 5:30 am, maybe napped, took kids to school, volunteered at Addie's school, took a nap, and went to work on an order for her Savvywraps! Yeah for her. Amazing energy!
I love you Mom and Mandy, thank you!!!!
And also thank you to Tammy Gabel today for sending me some beautiful scarves. I will put them to good use, it was a very thoughtful gift. Thank you!!
I received a note from my new church in Seattle, and look forward to developing a relationship with members of that community too.
In spite of all the pain, I still feel very lucky. I need the pain to go away, because I do not know how I will function and work later next year. It will subside, just not as fast as I'd like.
Hope all of you are well and thank you for your prayers.
Love,
Denise
Sunday, October 18, 2009
good day today
Hi to my dear friends and family,
Well I have to say that I am so relieved that this round of chemo has been kinder to me. Not as much fatigue, not as much nausea, not as much bitter taste and generally feeling more human. The best part is that I get a break this next week. Still go for shots Sunday, Monday, Tuesday but that is OK.
I see my new general practitioner on Thursday, and so I am getting "established" here as a patient.
The trees are golden and red, the air is ridiculously fresh and clean, so inspiring. Mom and I have been playing Scrabble. My sister has her festive holiday/winter 2009 Savvywrap tm done.
http://www.persimmonandpine.com/
They are georgeous, and precious and beautifully designed wreaths named "Boxwood with Berries". I am so proud of her, and she is truly an artist, she inspires us all.
Mom and I are having fun, talking and laughing when times are good. I am really hoping that this down time will be productive for me spiritually.
I am looking for a church and am hoping that I can receive a minister at home for now. I am not really ready to go to church, because I am still immuno-compromised, but need communion. I miss the walls of Holy Trinity in El Dorado Hills, miss the feeling of love received from my extended family.
I hope to get out a little next week, have truly been indoors the whole time. Mom is getting a walking stick, so that we will be able to take small walks together. I am not yet exercising either, not good. Need to do that.
Love my family, miss all my friends. Very blessed to have my doctors. I think I fell in love with Dr. P. He was a dream. Made me feel so secure and calm before placing my port/central line. Love you!
Thanks again Mandy for being with me the whole day on Thursday. Port placement and Chemo started around noon and ended after 8pm. What a day. Do not know what I would do without my sister. Love you.
Caio
Denise
Well I have to say that I am so relieved that this round of chemo has been kinder to me. Not as much fatigue, not as much nausea, not as much bitter taste and generally feeling more human. The best part is that I get a break this next week. Still go for shots Sunday, Monday, Tuesday but that is OK.
I see my new general practitioner on Thursday, and so I am getting "established" here as a patient.
The trees are golden and red, the air is ridiculously fresh and clean, so inspiring. Mom and I have been playing Scrabble. My sister has her festive holiday/winter 2009 Savvywrap tm done.
http://www.persimmonandpine.com/
They are georgeous, and precious and beautifully designed wreaths named "Boxwood with Berries". I am so proud of her, and she is truly an artist, she inspires us all.
Mom and I are having fun, talking and laughing when times are good. I am really hoping that this down time will be productive for me spiritually.
I am looking for a church and am hoping that I can receive a minister at home for now. I am not really ready to go to church, because I am still immuno-compromised, but need communion. I miss the walls of Holy Trinity in El Dorado Hills, miss the feeling of love received from my extended family.
I hope to get out a little next week, have truly been indoors the whole time. Mom is getting a walking stick, so that we will be able to take small walks together. I am not yet exercising either, not good. Need to do that.
Love my family, miss all my friends. Very blessed to have my doctors. I think I fell in love with Dr. P. He was a dream. Made me feel so secure and calm before placing my port/central line. Love you!
Thanks again Mandy for being with me the whole day on Thursday. Port placement and Chemo started around noon and ended after 8pm. What a day. Do not know what I would do without my sister. Love you.
Caio
Denise
Wednesday, October 14, 2009
settling into Seattle Cancer Care Alliance
Well, I have to thank Mandy again because every time I go to the clinic for a neupogen shot, I get to be in awe of the SCCA. It is a state of the art facility on the cutting edge of cancer research and treatment. My purpose in relocating my life to Seattle was to be with family, pure and simple. I was not even concerned or aware of the caliber of treatment available to me. All I knew was that I had to be with family. By the grace of God, my sister and her husband did research to find me the best treatment facility and insurance. My mother, bless her heart, is taking care of me at home. I cannot ask for a better situation.
My ability to tolerate the long waits is improving. I am getting excited that maybe I will be healed and that I am here to help someone know that cancer is not a death sentence. We all will pass, and we are not to know how, but at least we can have hope that cancer is not always the immediate killer.
My CA125 is lower, about 33. It is unbelievable to me and I am so relieved that the tumor marker is going down. That being said, it does not mean the tumors are gone. When I spoke with the clinical coordinator the other day, she said they need to monitor the tumor marker over time, so that we can be assured the chemotherapy is working.
As far as chemo goes, I really hate it. It gives me lots of nausea and stomach pain, and it totally wipes me out. For the first three days after treatment, I did nothing but sleep, shower, try to eat, and sleep again. So tomorrow I get a clavicular port put in to save my veins. Then I get more chemo, Taxol and Carbo. I am dreading the side effects. Good news, still have hair!
Today is literally the first day I have felt good enough to blog. It's hard to imagine that someone has not the energy to turn on the computer, but it is true. So for now I will say that I believe I am in excellent medical hands and God is taking care of my family to help and love me. My sister has so much to do, her children, her husband, her business and herself need attention....yet she makes time for me. I am so so so so so so so so so so fortunate. I love my family so much, I cannot tell you enough.
Thank you God. So until next time, as my Aunt Sadie used to say, "see you on the other side of the moon".
Love,
Denise
My ability to tolerate the long waits is improving. I am getting excited that maybe I will be healed and that I am here to help someone know that cancer is not a death sentence. We all will pass, and we are not to know how, but at least we can have hope that cancer is not always the immediate killer.
My CA125 is lower, about 33. It is unbelievable to me and I am so relieved that the tumor marker is going down. That being said, it does not mean the tumors are gone. When I spoke with the clinical coordinator the other day, she said they need to monitor the tumor marker over time, so that we can be assured the chemotherapy is working.
As far as chemo goes, I really hate it. It gives me lots of nausea and stomach pain, and it totally wipes me out. For the first three days after treatment, I did nothing but sleep, shower, try to eat, and sleep again. So tomorrow I get a clavicular port put in to save my veins. Then I get more chemo, Taxol and Carbo. I am dreading the side effects. Good news, still have hair!
Today is literally the first day I have felt good enough to blog. It's hard to imagine that someone has not the energy to turn on the computer, but it is true. So for now I will say that I believe I am in excellent medical hands and God is taking care of my family to help and love me. My sister has so much to do, her children, her husband, her business and herself need attention....yet she makes time for me. I am so so so so so so so so so so fortunate. I love my family so much, I cannot tell you enough.
Thank you God. So until next time, as my Aunt Sadie used to say, "see you on the other side of the moon".
Love,
Denise
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