I thought I'd take a moment to update on my progress. I am starting to get overwhelmed with all the medical appointments. Last week, I went to an appointment every day. Sun, Mon, Tues shot days. Wednesday I met my new primary care doctor who is concerned that I may be getting diabetes, swell. Thursday was chemo day. Friday was physical evaluation day, sigh.
On Friday I had to do a mandatory physical evaluation to see if I qualify for assisted transportation. What a hassle. and waste of taxpayer dollars. The only light there was I was enchanted with the story telling of an 83 year old WWII vet, from New York. He was a sweet elderly man, one leg had been amputated. He told me stories about how he loved the culture of New York, but had lived on a farm. Told me about growing up in the depression era and how he felt so fortunate to have been a clerk during the war. He said he taught soldiers to read and write as well. He helped pass the time, none-the-less. We were both there for our "test".
The reason the back-up transportation is so important is that there may be a day when I need a ride to a doctor or chemo. Mom cannot drive at dusk/dawn/night. My sister does have a family and they have all had the flu for two weeks now. King County has a transportation program, but the approval process is cumbersome and full of red tape. The process of physically going to a hospital, being tested by a physical therapist, and riding back was almost 4 hours. It exhausted me. I just hope I get approved, I'd really use the service if available to me.
Anyway, as far as my health goes, I am definitely feeling the nausea as the chemo schedule continues. I was told that the cumulative effects of chemo are that the side effects intensify as time passes. The chemo drugs linger in your body, and each time you add more chemo, there is more in your system., more to hurt you.
The good news is that my anti-nausea medication works fairly quickly. I am now being screened for diabetes because my blood sugars are running high. I am also noticing an effect called "nystagmus", which is basically my eyes will jerk back and forth super fast for no appearant reason. I just have to manage these little battles as I go.
Because of the new onset of nystagmus and possible diabetes, I am fairly sure I am not going to increase the frequency of my chemo. My doctor told me she was worried I wasn't getting enough chemo. I haven't fully decided yet, but I don't want to do any major additional damage to my body because of the chemo. I need to talk more with her and see what she says. So for now I am going to take my scheduled week off next Thursday, I really need it.
I am interested in any advice someone has to offer about how to live in the future. Assuming I heal from cancer, and assuming eventually I should need to return to work, I have no job. What am I going to do? I want to do something meaningful, something real. I would like to be a counselor or maybe learn how to be a technical writer.
The key is that my vocation will need to be based from home. If anyone has any ideas, please share comments. I need to use my second chance wisely and really do something valuable for others. I just don't have a clue what that should be.
Thank you all for your care and concern. Love you all. Denise
CDC Symptom Diary Card
Sunday, November 08, 2009
Tuesday, November 03, 2009
#2 blade please, look ma no hair
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
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
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
Subscribe to:
Posts (Atom)