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.
CDC Symptom Diary Card
Friday, October 30, 2009
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
Wednesday, October 07, 2009
here we go again
Well, it's been one heckof a week. I'm all teary eyed because Craig returned to California today. He arrived Monday with his SUV packed full of my "stuff'. He drove alone, and I am still blown away by his generosity. I am blown away by everyone's generosity. He got to spend time at the music museum, see Jimi Hendrix' statue and we spent time at Pike's Market. We went to dinner after a walk on the beach at Golden Garden's park. We ate at Ray's cafe. I was in so much pain, and really wish I could have done more. He seemed happy and I am so so grateful for his time and energy. It is so hard to say goodbye to people you love. He will come back soon I hope.
Tomorrow I resume chemotherapy. My beautiful sister and mom will help me along for this long day. The time table is longer, but having a private room or area will make it bearable.
I will be treated with Taxol and Carboplatin this time, twice the medications. I am a little nervous about it, because I am generally sensitive anyway. I'm praying it will be OK.
I am still busy wrapping up details from California, and arranging alternative transportation to ease the burden with mom and Mandy. As it turns out, I do need to go get neupogen shots at least three times weekly, in addition to chemo three times a month. Sometimes I just want to curl up in a blanket and just sleep for a year. Just put me in a coma and kill off the cancer. Wake me when it's over.
I can't wait to see Laria, Addie, and Pat. It will be a week tomorrow, and it just takes time to settle in. I miss my friends. God has been good to me. I have a great family and I know I am in the right place to heal.
Seattle is incredible, green, and very diverse. Nutty to drive here though, just a maze of streets all over the place. Every house is different. Streets are narrow. Neighborhoods have their own pulse and energy, so eclectic.
Well, off to another shot of chemo. I will check back in a few days. I love you all and thank you for your support!
Love,
Denise
Tomorrow I resume chemotherapy. My beautiful sister and mom will help me along for this long day. The time table is longer, but having a private room or area will make it bearable.
I will be treated with Taxol and Carboplatin this time, twice the medications. I am a little nervous about it, because I am generally sensitive anyway. I'm praying it will be OK.
I am still busy wrapping up details from California, and arranging alternative transportation to ease the burden with mom and Mandy. As it turns out, I do need to go get neupogen shots at least three times weekly, in addition to chemo three times a month. Sometimes I just want to curl up in a blanket and just sleep for a year. Just put me in a coma and kill off the cancer. Wake me when it's over.
I can't wait to see Laria, Addie, and Pat. It will be a week tomorrow, and it just takes time to settle in. I miss my friends. God has been good to me. I have a great family and I know I am in the right place to heal.
Seattle is incredible, green, and very diverse. Nutty to drive here though, just a maze of streets all over the place. Every house is different. Streets are narrow. Neighborhoods have their own pulse and energy, so eclectic.
Well, off to another shot of chemo. I will check back in a few days. I love you all and thank you for your support!
Love,
Denise
Thursday, October 01, 2009
hello Seattle
I am so grateful to my brother, sister and mother for literally carrying me to the pacific northwest. Mandy and I landed yesterday and I have already met my fabulous oncology team. Dr. G is wonderful. She and her team spent 3 hours with mom, Mandy and I asking questions, getting to know me and truly took a sincere interest in our care. Mandy has been a bundle of joy.
Moving from California has been so draining, and dealing with daily doctor appointments and housemate conflicts has made this time of my life a real challenge. My friend Barb came by with Chinese food on Tuesday evening to say goodbye. She cut my hair short and sassy. I'm ready with scarfs and hats. just need a wig.
It looks like I will still be doing weekly or bi-weekly chemo because of my fragile blood counts, but here I feel like I am going to be well taken care of. There is a nutritionist available and all kinds of support to help me and my family along the way.
Seattle is so extremely different, like night and day. So fresh and green. The air is crisp and the trees are tall. Every house is unique and it seems "friendly" here. I am looking forward to creating my new home.
I was so excited because I got to see one of my nieces yesterday. I will soon get to see the other little angel and Mandy's husband. I am so thankful to God for my family. I can't do enough in return to express my deepest gratitude for getting me to this place that I can now call home.
I will be able to heal here, I can feel it. I have a long way to go, at least 6 more treatments, possible still another 18 weeks. I'm ready.
I love you Mandy and Arnie!!!!! Love you mom!!!! Will miss you Barb!!!! Will miss you Craig!!!! Will miss you Mike and Pier!!!! Will miss you Russ and Teresa!!! Love you to the rest of my family. Love you all.
Moving from California has been so draining, and dealing with daily doctor appointments and housemate conflicts has made this time of my life a real challenge. My friend Barb came by with Chinese food on Tuesday evening to say goodbye. She cut my hair short and sassy. I'm ready with scarfs and hats. just need a wig.
It looks like I will still be doing weekly or bi-weekly chemo because of my fragile blood counts, but here I feel like I am going to be well taken care of. There is a nutritionist available and all kinds of support to help me and my family along the way.
Seattle is so extremely different, like night and day. So fresh and green. The air is crisp and the trees are tall. Every house is unique and it seems "friendly" here. I am looking forward to creating my new home.
I was so excited because I got to see one of my nieces yesterday. I will soon get to see the other little angel and Mandy's husband. I am so thankful to God for my family. I can't do enough in return to express my deepest gratitude for getting me to this place that I can now call home.
I will be able to heal here, I can feel it. I have a long way to go, at least 6 more treatments, possible still another 18 weeks. I'm ready.
I love you Mandy and Arnie!!!!! Love you mom!!!! Will miss you Barb!!!! Will miss you Craig!!!! Will miss you Mike and Pier!!!! Will miss you Russ and Teresa!!! Love you to the rest of my family. Love you all.
Saturday, September 26, 2009
transitions
Today will be a very blessed day. This morning I saw my brother off to Seattle. He flew in from Colorado last night and is driving my car to Seattle today. Then this afternoon my sister is flying in from Seattle and on Wednesday we will fly to Seattle together. It was so hard to say goodbye to my brother, Arnie. I hadn't seen him in forever, it was too short of a visit. It was soooo good to spend time with him. I have a great brother. I have a great sister too. Mandy will be helping me wrap up final details. My ex-boyfriend Craig will be travelling with his son on a future date to move the rest of my "stuff" to Seattle.
It has been trying to sort and pack and go daily to the doctors office. I just had a chemo treatment this past Wednesday, and am wiped. The lingering abdominal pain from surgery really gets in my way, but each day it's teeny tiny bit less.
One struggle I wasn't expecting was an argument with my previous gynecologist (not my surgeon). We'll call him Dr. P. I had been seeing this gynecologist (Dr. P) since March. He did not do a pelvic exam on my initial visit. I guess it's fair to say I kindof blame him for now, but blame will not heal me. The argument came as a result of me being denied a copy of my "complete" file. They originally mailed a partial copy of my medical records. When I called two days ago to get a complete copy, they refused. So I literally had to go into his office after my lab appointment, and demand the copy face to face. I had to call the Department of Managed Care right on the spot, just to get them to agree. I have never been refused a complete copy of my medical records by any doctor, ever. His refusal to cooperate only makes him look guilty, he knows he could be held responsible.
I am not saying that I have legitimate grounds for charges, but I do want him to think hard about my case. I want him to be more alert when he does his future examinations and be more attentive to the symptoms of Ovarian Cancer. His staff acted like they don't even care, and all they cared about was that I was "rude" for demanding my records. It's as if they truly could have cared less about me as a person, that's scary.
So our words of wisdom here are, if you are not feeling like your doctor cares at all, and if you can switch doctors, do it. I really believe that their level of quality care is to the extent that they and the staff care about you as a patient and a person. This guy didn't care.
So now I am off to Seattle, starting a new life, being with family and have a chance to start over with new doctors. I will make every effort I can to help them care about me as a person, I need them to care.
Thank you Mike and Pier for picking my brother up from the airport and thanks Barb for helping me get the car packed. Thanks Craig for taking me to chemo again and for helping me get my posessions to Seattle. Thank you Mandy for flying out here and being with me these last few days. I love you all!
It has been trying to sort and pack and go daily to the doctors office. I just had a chemo treatment this past Wednesday, and am wiped. The lingering abdominal pain from surgery really gets in my way, but each day it's teeny tiny bit less.
One struggle I wasn't expecting was an argument with my previous gynecologist (not my surgeon). We'll call him Dr. P. I had been seeing this gynecologist (Dr. P) since March. He did not do a pelvic exam on my initial visit. I guess it's fair to say I kindof blame him for now, but blame will not heal me. The argument came as a result of me being denied a copy of my "complete" file. They originally mailed a partial copy of my medical records. When I called two days ago to get a complete copy, they refused. So I literally had to go into his office after my lab appointment, and demand the copy face to face. I had to call the Department of Managed Care right on the spot, just to get them to agree. I have never been refused a complete copy of my medical records by any doctor, ever. His refusal to cooperate only makes him look guilty, he knows he could be held responsible.
I am not saying that I have legitimate grounds for charges, but I do want him to think hard about my case. I want him to be more alert when he does his future examinations and be more attentive to the symptoms of Ovarian Cancer. His staff acted like they don't even care, and all they cared about was that I was "rude" for demanding my records. It's as if they truly could have cared less about me as a person, that's scary.
So our words of wisdom here are, if you are not feeling like your doctor cares at all, and if you can switch doctors, do it. I really believe that their level of quality care is to the extent that they and the staff care about you as a patient and a person. This guy didn't care.
So now I am off to Seattle, starting a new life, being with family and have a chance to start over with new doctors. I will make every effort I can to help them care about me as a person, I need them to care.
Thank you Mike and Pier for picking my brother up from the airport and thanks Barb for helping me get the car packed. Thanks Craig for taking me to chemo again and for helping me get my posessions to Seattle. Thank you Mandy for flying out here and being with me these last few days. I love you all!
Sunday, September 20, 2009
chemoland
Hi everyone,
I had a respite from blogging because I started chemo, and have been a bit on the down side. I have been required to get a daily lab draw, and injections of Neupogen to boost my immune system as needed. My patience has been on the thin side, sitting in the waiting room every day. AND, I still have to do all the things you normally would need to do if you were moving. I am exhausted, didn't even make it to church today. I get another dose of chemo in three days, and really can't say that I'm excited. The blessing here is that I CAN get chemotherapy and that it could finish the surgeon's handywork.
The side effects kicked in about 24 hours after the treatment. I got nausea just pressing on my tummy, not fun. My fatigue is over the top, but I'm managing. Nothing tastes good and I still have to be careful about what I eat. I still have abdominal pain from the surgery!
I have been informed that I will start losing my hair next week. Not sure what to feel about that either. I went looking for a scarf or wrap yesterday, no luck. Too tired to shop around. Hair grows back, so it's not too big of a deal. The thing I am dreading is feeling sickly. THAT I can do without. I don't do "sick" well, never have. Pain, I have been able to manage, but "sick", not so much. Hopefully I will be able to DEAL and find ways to get mental and spiritual control over the side effects of poison streaming through my body.
I have met so many wonderful people who have suffered through chemotherapy and they seem to be doing well, and look "alive". So I keep their images in the back of my mind.
I get to see my brother and sister in less than a week! Yeah! I am praying for their safe travel. I am so excited to see them. This week is going to be very busy, getting the final preparations made for moving, while each day getting lab work, or chemo, or iron treatments. It is a bit exhausting. There is still so much to do, sigh.
Hopefully I can visit my church after my IV iron treatment on Monday.
This must sound so boring, but it is my life now. Managing my cancer has suddenly become a full time job, literally. Managing meds, keeping my journal, daily appointments, trying to get to the store, what to eat, can I eat?
Someday we will treat cancer not with poison, but with intelligent nano-medicine, that only destroys cancer cells. That technology exists already, I just wish it was in use today.
I thank God for my family and friends. Thank you for getting me through this nightmare. Love, Denise
I had a respite from blogging because I started chemo, and have been a bit on the down side. I have been required to get a daily lab draw, and injections of Neupogen to boost my immune system as needed. My patience has been on the thin side, sitting in the waiting room every day. AND, I still have to do all the things you normally would need to do if you were moving. I am exhausted, didn't even make it to church today. I get another dose of chemo in three days, and really can't say that I'm excited. The blessing here is that I CAN get chemotherapy and that it could finish the surgeon's handywork.
The side effects kicked in about 24 hours after the treatment. I got nausea just pressing on my tummy, not fun. My fatigue is over the top, but I'm managing. Nothing tastes good and I still have to be careful about what I eat. I still have abdominal pain from the surgery!
I have been informed that I will start losing my hair next week. Not sure what to feel about that either. I went looking for a scarf or wrap yesterday, no luck. Too tired to shop around. Hair grows back, so it's not too big of a deal. The thing I am dreading is feeling sickly. THAT I can do without. I don't do "sick" well, never have. Pain, I have been able to manage, but "sick", not so much. Hopefully I will be able to DEAL and find ways to get mental and spiritual control over the side effects of poison streaming through my body.
I have met so many wonderful people who have suffered through chemotherapy and they seem to be doing well, and look "alive". So I keep their images in the back of my mind.
I get to see my brother and sister in less than a week! Yeah! I am praying for their safe travel. I am so excited to see them. This week is going to be very busy, getting the final preparations made for moving, while each day getting lab work, or chemo, or iron treatments. It is a bit exhausting. There is still so much to do, sigh.
Hopefully I can visit my church after my IV iron treatment on Monday.
This must sound so boring, but it is my life now. Managing my cancer has suddenly become a full time job, literally. Managing meds, keeping my journal, daily appointments, trying to get to the store, what to eat, can I eat?
Someday we will treat cancer not with poison, but with intelligent nano-medicine, that only destroys cancer cells. That technology exists already, I just wish it was in use today.
I thank God for my family and friends. Thank you for getting me through this nightmare. Love, Denise
Saturday, September 12, 2009
answering prayers
Well, this is a note dedicated to Mandy and Pat, for they were the ones who worked tirelessly searching for insurance. Well, we may have struck oil on this and I am eternally grateful to my sister and her husband, for I could not have done that work.
My surgery had me so incapacitated, they had to do the legwork for me and now I don't have to worry about trying to find a way to receive chemotherapy in northern California. We received an acceptance letter, but need to wrap up details, so it's 99% complete!
I don't want to jinx this by giving away details. I have been in a stupor since yesterday. I am shocked, excited beyond belief and sketptical all at the same time.
I believe that I am on a river, in a well guided canoe, and we are coming upon rough waters, but after those waters lies a calm flow, where I can gently rest upon the shore. I am not in control of this canoe, it is God. I believe this to be true, fully in my heart and soul because every step of the way of this journey has caused me to demonstrate resistence to all these changes, enough that would make anyone want to quit on me.
My family has stuck with me and prayed. My friends, old and new, are praying. Members of my church are praying, and of course I am praying. I pray mostly for those who have to deal with my emotions, which are everywhere.
I thank God and Mandy and Pat for this critical component of my recovery. I am so excited that I can be with them and my mother, and get through chemo with support.
God wants me in Seattle, that's all I can say.
Thank you all for your support. I start chemo on Monday, just a light dose, so I should be fine. I guess we'll see. My brother is coming in a few weeks, can't wait to see Arnie. Yeah! And then Mandy and I will be on a plane.
I'm nervous and excited. My life is literally starting over. Thank you again!
Love,
Denise
My surgery had me so incapacitated, they had to do the legwork for me and now I don't have to worry about trying to find a way to receive chemotherapy in northern California. We received an acceptance letter, but need to wrap up details, so it's 99% complete!
I don't want to jinx this by giving away details. I have been in a stupor since yesterday. I am shocked, excited beyond belief and sketptical all at the same time.
I believe that I am on a river, in a well guided canoe, and we are coming upon rough waters, but after those waters lies a calm flow, where I can gently rest upon the shore. I am not in control of this canoe, it is God. I believe this to be true, fully in my heart and soul because every step of the way of this journey has caused me to demonstrate resistence to all these changes, enough that would make anyone want to quit on me.
My family has stuck with me and prayed. My friends, old and new, are praying. Members of my church are praying, and of course I am praying. I pray mostly for those who have to deal with my emotions, which are everywhere.
I thank God and Mandy and Pat for this critical component of my recovery. I am so excited that I can be with them and my mother, and get through chemo with support.
God wants me in Seattle, that's all I can say.
Thank you all for your support. I start chemo on Monday, just a light dose, so I should be fine. I guess we'll see. My brother is coming in a few weeks, can't wait to see Arnie. Yeah! And then Mandy and I will be on a plane.
I'm nervous and excited. My life is literally starting over. Thank you again!
Love,
Denise
Wednesday, September 09, 2009
President Obama
Hello everyone,
First of all: thank you family and friends again for all your love and support. I am limited on energy for a good reason, now I can drive. The only problem is that it kills me to drive, still painful and exhausts me. Too exhausted to talk this evening. Luckily the driving is all within 5 miles (Dr. Office, post office, store, pharmacy). I was so tired at Target that I had to rest on the lawn chair display.
I am very happy though, because I have seen cows, horses, restaurants, parks, people. Wow, I forgot what john "Q" public is like. So today I am gratefully accepting my new pains that have come with a dose of freedom. I have received two shots of Neupogen to boost my immune system, and will need a blood test each day this week.
President Obama tried this evening to send a message, let's take care of each other without bankrupting ourselves, businesses or our country. Personally, I think the most charitable, humane, and democratic solution requires that we restructure the entire health care system and have socialized health care. BUT, that is not realistic. I LIKE WHAT OUR PRESIDENT HAD TO SAY.
A Public Health "Exchange" was what I heard, as opposed to "public government option". If I am wrong, go ahead and correct me. I like the idea of the individuals being able to "coop" into a larger plan as individuals so that they can pay rates comperable to individuals who receive employer sponsored health insurance. But there are many citizens who would not even be able to afford that. The "working poor" may still lose out, but I pray that is not the case.
It is just so hard to defend profit driven health care, but America is based on opportunity. I guess if it doesn't work out, I can move to Canada..ha!
So I wish our President the best and pray that the Legislative branch of our government stops bending over for the insurance and drug companies, and starts bending over for their consituents. Isn't that why they are there, to serve the public? That wasn't very dignified statement, was it. Oh well, I want them to be on my side, your side, your family's side, so that we can all be healthy.
Nighty night
First of all: thank you family and friends again for all your love and support. I am limited on energy for a good reason, now I can drive. The only problem is that it kills me to drive, still painful and exhausts me. Too exhausted to talk this evening. Luckily the driving is all within 5 miles (Dr. Office, post office, store, pharmacy). I was so tired at Target that I had to rest on the lawn chair display.
I am very happy though, because I have seen cows, horses, restaurants, parks, people. Wow, I forgot what john "Q" public is like. So today I am gratefully accepting my new pains that have come with a dose of freedom. I have received two shots of Neupogen to boost my immune system, and will need a blood test each day this week.
President Obama tried this evening to send a message, let's take care of each other without bankrupting ourselves, businesses or our country. Personally, I think the most charitable, humane, and democratic solution requires that we restructure the entire health care system and have socialized health care. BUT, that is not realistic. I LIKE WHAT OUR PRESIDENT HAD TO SAY.
A Public Health "Exchange" was what I heard, as opposed to "public government option". If I am wrong, go ahead and correct me. I like the idea of the individuals being able to "coop" into a larger plan as individuals so that they can pay rates comperable to individuals who receive employer sponsored health insurance. But there are many citizens who would not even be able to afford that. The "working poor" may still lose out, but I pray that is not the case.
It is just so hard to defend profit driven health care, but America is based on opportunity. I guess if it doesn't work out, I can move to Canada..ha!
So I wish our President the best and pray that the Legislative branch of our government stops bending over for the insurance and drug companies, and starts bending over for their consituents. Isn't that why they are there, to serve the public? That wasn't very dignified statement, was it. Oh well, I want them to be on my side, your side, your family's side, so that we can all be healthy.
Nighty night
Sunday, September 06, 2009
September National Ovarian Cancer Awareness Month
Cancer News from Tahoe Forest Cancer Center:
September Is National Ovarian Cancer Awareness Month
CancerConsultants.com - News 9/1/2009
As the month of September brings ovarian cancer into focus, it’s time to increase public understanding about the disease, including its prevalence, approaches to screening and prevention, treatment options, and resources that offer updated ovarian cancer information throughout the year.
According to statistics from the American Cancer Society (ACS), ovarian cancer causes more deaths than any other cancer of the female reproductive system. The ACS estimates that in 2009 there will be 21,550 new cases in the United States and an estimated 14,600 deaths related to ovarian cancer.[1] The high death rate associated with ovarian cancer is largely attributed to the fact that the disease is often diagnosed once it has already become advanced, making effective treatment difficult. It’s also important to note, however, that progress is being made in research and in public awareness, as campaigns promote prevention and early detection of ovarian cancer. Staying informed with the latest news on prevention and screening are important steps in reducing your risk of developing ovarian cancer and of detecting disease in its early, most treatable stages. And, should a diagnosis occur, access to current, in-depth treatment information can help you find the best care.
Learning More About Ovarian Cancer
•Find great tips on recognizing early symptoms of ovarian cancer and insight into management of the disease at http://www.cancerconsultants.com/about-cancerconsultants/subscription/.
•To find expanded information on the prevention, screening, and treatment of ovarian cancer, stay updated with the lasted news on the disease, and join an ovarian cancer community, visit the Ovarian Cancer Information Center.
•Sign up to receive Cancer Consultants’ free online ovarian cancer newsletter, which provides disease-specific features, current news, tips, and nutrition and wellness information. Subscribe at http://www.cancerconsultants.com/about-cancerconsultants/subscription/.
•Visit the Cancer Store on Cancerconsultants.com for book titles with topics ranging from personal cancer memoirs to expert nutritional guides about fueling your body to prevent and fight cancer. As well, find back issues of Women magazine, including the winter 2007-2008 issue with a special section devoted to ovarian cancer.
Reference:
[1] American Cancer Society. Cancer Facts and Figures 2009. Available at http://www.cancer.org/docroot/STT/stt_0.asp (Accessed August 27, 2009).
Cancer News
Women Report Symptoms Prior to Diagnosis of Ovarian Cancer
CancerConsultants.com - News 9/2/2009
Women commonly report symptoms to their primary care provider during the year before a diagnosis of ovarian cancer. The results of this study, which was conducted in the UK, were published in the British Medical Journal.
Ovarian cancer has the highest mortality rate of all gynecologic cancers. It is the fifth leading cause of cancer death among U.S. women, with a projected 21,550 new cases and 14,600 deaths in 2009.
One of the reasons that ovarian cancer tends to be so deadly is that it is often detected at a late stage when it is difficult to treat. An important focus of research, therefore, is the development of effective screening tests that will allow for the earlier detection of ovarian cancer. In addition to studies of blood tests and imaging, researchers are exploring whether certain symptoms can help identify women who may benefit from diagnostic testing.
Previously, a consensus statement from the American Cancer Society, the Gynecologic Cancer Foundation, and the Society of Gynecologic Oncologists recommended that women discuss the following symptoms with a physician: bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly, and urinary symptoms (urgency or frequency). Although these symptoms can be caused by conditions other than ovarian cancer, women who experience these symptoms almost daily for more than a few weeks are encouraged to see a doctor, preferably a gynecologist.[1]
To further explore the occurrence of symptoms that may be related to ovarian cancer, researchers in the United Kingdom conducted a study among 212 women with ovarian cancer and 1,060 women without ovarian cancer.[2]
The researchers collected symptom information from the primary care medical records of all study participants. The focus was the year prior to the patient’s diagnosis of ovarian cancer (or a comparable period for the women without ovarian cancer).
Symptoms that were significantly more common in women with ovarian cancer than in women without ovarian cancer were the following:
•Abdominal distention
•Postmenopausal bleeding
•Loss of appetite
•urinary frequency
•Abdominal pain
•Rectal bleeding
• Abdominal bloating
Eighty-five percent of women with ovarian cancer reported at least one of these symptoms in the year before their cancer diagnosis. In contrast, among the women without ovarian cancer, only 15% reported one or more of these symptoms.
The researchers conclude: “Women with ovarian cancer usually have symptoms and report them to primary care, sometimes months before diagnosis.”
Although these symptoms may be caused by conditions other than ovarian cancer, women who are experiencing symptoms are advised to discuss them with their physician.
References:
--------------------------------------------------------------------------------
[1] American Cancer Society. Ovarian cancer has early symptoms. First national consensus on common warning signs. Available at: http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Ovarian_Cancer_Symptoms_The_Silence_Is_Broken.asp (Accessed June 20, 2007).
[2] Hamilton W, Peters TJ, Bankhead C, Sharp D. Risk of ovarian cancer in women with symptoms in primary care: population based case-control study. British Medical Journal. 2009;339:b2998.
September Is National Ovarian Cancer Awareness Month
CancerConsultants.com - News 9/1/2009
As the month of September brings ovarian cancer into focus, it’s time to increase public understanding about the disease, including its prevalence, approaches to screening and prevention, treatment options, and resources that offer updated ovarian cancer information throughout the year.
According to statistics from the American Cancer Society (ACS), ovarian cancer causes more deaths than any other cancer of the female reproductive system. The ACS estimates that in 2009 there will be 21,550 new cases in the United States and an estimated 14,600 deaths related to ovarian cancer.[1] The high death rate associated with ovarian cancer is largely attributed to the fact that the disease is often diagnosed once it has already become advanced, making effective treatment difficult. It’s also important to note, however, that progress is being made in research and in public awareness, as campaigns promote prevention and early detection of ovarian cancer. Staying informed with the latest news on prevention and screening are important steps in reducing your risk of developing ovarian cancer and of detecting disease in its early, most treatable stages. And, should a diagnosis occur, access to current, in-depth treatment information can help you find the best care.
Learning More About Ovarian Cancer
•Find great tips on recognizing early symptoms of ovarian cancer and insight into management of the disease at http://www.cancerconsultants.com/about-cancerconsultants/subscription/.
•To find expanded information on the prevention, screening, and treatment of ovarian cancer, stay updated with the lasted news on the disease, and join an ovarian cancer community, visit the Ovarian Cancer Information Center.
•Sign up to receive Cancer Consultants’ free online ovarian cancer newsletter, which provides disease-specific features, current news, tips, and nutrition and wellness information. Subscribe at http://www.cancerconsultants.com/about-cancerconsultants/subscription/.
•Visit the Cancer Store on Cancerconsultants.com for book titles with topics ranging from personal cancer memoirs to expert nutritional guides about fueling your body to prevent and fight cancer. As well, find back issues of Women magazine, including the winter 2007-2008 issue with a special section devoted to ovarian cancer.
Reference:
[1] American Cancer Society. Cancer Facts and Figures 2009. Available at http://www.cancer.org/docroot/STT/stt_0.asp (Accessed August 27, 2009).
Cancer News
Women Report Symptoms Prior to Diagnosis of Ovarian Cancer
CancerConsultants.com - News 9/2/2009
Women commonly report symptoms to their primary care provider during the year before a diagnosis of ovarian cancer. The results of this study, which was conducted in the UK, were published in the British Medical Journal.
Ovarian cancer has the highest mortality rate of all gynecologic cancers. It is the fifth leading cause of cancer death among U.S. women, with a projected 21,550 new cases and 14,600 deaths in 2009.
One of the reasons that ovarian cancer tends to be so deadly is that it is often detected at a late stage when it is difficult to treat. An important focus of research, therefore, is the development of effective screening tests that will allow for the earlier detection of ovarian cancer. In addition to studies of blood tests and imaging, researchers are exploring whether certain symptoms can help identify women who may benefit from diagnostic testing.
Previously, a consensus statement from the American Cancer Society, the Gynecologic Cancer Foundation, and the Society of Gynecologic Oncologists recommended that women discuss the following symptoms with a physician: bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly, and urinary symptoms (urgency or frequency). Although these symptoms can be caused by conditions other than ovarian cancer, women who experience these symptoms almost daily for more than a few weeks are encouraged to see a doctor, preferably a gynecologist.[1]
To further explore the occurrence of symptoms that may be related to ovarian cancer, researchers in the United Kingdom conducted a study among 212 women with ovarian cancer and 1,060 women without ovarian cancer.[2]
The researchers collected symptom information from the primary care medical records of all study participants. The focus was the year prior to the patient’s diagnosis of ovarian cancer (or a comparable period for the women without ovarian cancer).
Symptoms that were significantly more common in women with ovarian cancer than in women without ovarian cancer were the following:
•Abdominal distention
•Postmenopausal bleeding
•Loss of appetite
•urinary frequency
•Abdominal pain
•Rectal bleeding
• Abdominal bloating
Eighty-five percent of women with ovarian cancer reported at least one of these symptoms in the year before their cancer diagnosis. In contrast, among the women without ovarian cancer, only 15% reported one or more of these symptoms.
The researchers conclude: “Women with ovarian cancer usually have symptoms and report them to primary care, sometimes months before diagnosis.”
Although these symptoms may be caused by conditions other than ovarian cancer, women who are experiencing symptoms are advised to discuss them with their physician.
References:
--------------------------------------------------------------------------------
[1] American Cancer Society. Ovarian cancer has early symptoms. First national consensus on common warning signs. Available at: http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Ovarian_Cancer_Symptoms_The_Silence_Is_Broken.asp (Accessed June 20, 2007).
[2] Hamilton W, Peters TJ, Bankhead C, Sharp D. Risk of ovarian cancer in women with symptoms in primary care: population based case-control study. British Medical Journal. 2009;339:b2998.
Friday, September 04, 2009
bone marrow biopsy and updates
When it comes to bone marrow tests, if your doctor/nurse ever say "this won't hurt, it's just pressure"...they are LYING. The nurses are programed to say "it doesn't hurt, it's just pressure". Why do they lie? By the way, a bone marrow test is done by taking blood and bone marrow tissue from the hip bone. I had one in 2007, it hurt then, and it hurt now. That is partly why I was so anxious, I knew that it would hurt.
Anyway, it is over. It's like this, you are on the table, on your side, bum exposed. He says "this will sting" and he injects lidocaine. Then he injects more lidocaine. Then he says, "you will feel some pressure." I call this the "crank and yank" because you can hear the tool being screwed into your bone and feel it being turned and churned. Then he has to yank and yank until he gets a sample. Sorry for being so graphic, but it is what it is. "Pressure" is from the mini drilling he does to get blood and bone samples. Pressure turns into shooting pain, but goes away as soon as he removes the needle. Then he says, "this piece is too small". He drills again, hello????? Finally after several drills, it was over.
Anyway, my bum hurts and now my left hand is swollen from squeezing the nurse's hand too hard. Did I mention I have arthritis?
If you ever have to do a bone marrow test, just know that it's only temporary pain and you do get through it. You live. Allow yourself to receive an anti-anxiety drug, please. And most of all, it's one of the most important medical tests you can ever receive. If you need it, get it.
I felt like such a baby when I called my sister last night. She said she had a liver biopsy with no pain killers or lidocaine several years ago. I almost cried. I guess the doctors thought she wouldn't feel anything bad. She said she was stunned into pain, and shocked. My sister is so strong. Where was I? I have been a lame sister at times. By the grace of God, she is here for me now.
Next week I get to go to the oncologist every day for blood tests and get to receive two shots to boost my immune system. They also did a simple CBC yesterday, and I still have a low white blood cell count.
I still can't drive. (Bless the American Cancer Society, but they can't take me to any appointments because they need 10 day notice. My doctors aren't giving me 10 day notice.) Thank God for Craig, Mike, Barb and Judy. Hopefully I will be able to drive soon...........hopefully.
I can't get my pain under control until about 1pm every day, but today I walked down the street past 5 houses. Trying to work out the pain in my bum and abdomen. It felt like 2 miles, but it was good exercise. Step by step my strength and endurance are getting better.
On the insurance side, the California Dept of Insurance only handles PPOs. I did manage to mail an appeal to the Department of Managed Care, which handles HMOs. Isn't this fun. I was on hold with Soc Sec for half hour and hung up.
My arthritis is slowly getting worse because I am on limited medications. My rheumatologist and primary care doctor believe I should apply for Soc Sec Dis because of my combined illnesses. Once I have my chemo treatment plan, I will have a better idea of what to put on the application.
I emailed my congressman again and sent two e-mails to the President Obama asking that insurance portability be allowed in all 50 states and that portability laws be enacted immediately. I need to be with my family.
Thank you Craig for taking me to the doctor yesterday. Thank you God for taking care of my family and friends.
Love,
Denise
Anyway, it is over. It's like this, you are on the table, on your side, bum exposed. He says "this will sting" and he injects lidocaine. Then he injects more lidocaine. Then he says, "you will feel some pressure." I call this the "crank and yank" because you can hear the tool being screwed into your bone and feel it being turned and churned. Then he has to yank and yank until he gets a sample. Sorry for being so graphic, but it is what it is. "Pressure" is from the mini drilling he does to get blood and bone samples. Pressure turns into shooting pain, but goes away as soon as he removes the needle. Then he says, "this piece is too small". He drills again, hello????? Finally after several drills, it was over.
Anyway, my bum hurts and now my left hand is swollen from squeezing the nurse's hand too hard. Did I mention I have arthritis?
If you ever have to do a bone marrow test, just know that it's only temporary pain and you do get through it. You live. Allow yourself to receive an anti-anxiety drug, please. And most of all, it's one of the most important medical tests you can ever receive. If you need it, get it.
I felt like such a baby when I called my sister last night. She said she had a liver biopsy with no pain killers or lidocaine several years ago. I almost cried. I guess the doctors thought she wouldn't feel anything bad. She said she was stunned into pain, and shocked. My sister is so strong. Where was I? I have been a lame sister at times. By the grace of God, she is here for me now.
Next week I get to go to the oncologist every day for blood tests and get to receive two shots to boost my immune system. They also did a simple CBC yesterday, and I still have a low white blood cell count.
I still can't drive. (Bless the American Cancer Society, but they can't take me to any appointments because they need 10 day notice. My doctors aren't giving me 10 day notice.) Thank God for Craig, Mike, Barb and Judy. Hopefully I will be able to drive soon...........hopefully.
I can't get my pain under control until about 1pm every day, but today I walked down the street past 5 houses. Trying to work out the pain in my bum and abdomen. It felt like 2 miles, but it was good exercise. Step by step my strength and endurance are getting better.
On the insurance side, the California Dept of Insurance only handles PPOs. I did manage to mail an appeal to the Department of Managed Care, which handles HMOs. Isn't this fun. I was on hold with Soc Sec for half hour and hung up.
My arthritis is slowly getting worse because I am on limited medications. My rheumatologist and primary care doctor believe I should apply for Soc Sec Dis because of my combined illnesses. Once I have my chemo treatment plan, I will have a better idea of what to put on the application.
I emailed my congressman again and sent two e-mails to the President Obama asking that insurance portability be allowed in all 50 states and that portability laws be enacted immediately. I need to be with my family.
Thank you Craig for taking me to the doctor yesterday. Thank you God for taking care of my family and friends.
Love,
Denise
Tuesday, September 01, 2009
contradictions
Well, as government goes, government does what it can. I called my congressman's office and they said to call my state assemblyman. My state assemblyman's office said to call my congressman if the Dept of Managed Care help center is not able to "help". So, because insurance portability, or lack thereof, is controlled by both State and Federal statutes, per "them", nobody is really willing to go out on a ledge for me. The gentlemen I spoke with today were all very concerned and felt bad, and I could tell they were sincere. At least there is motion.
I had the pleasure of speaking with Philip today (an old good friend) and he recommended I call the California Dept of Insurance. So that is on my list for tomorrow, before my doctor appointment. It was so nice to talk with him today. It's amazing how we all can make a difference with kindness and care. Thank you Philip for your prayers and I am so happy that your life is full of joy. I have Philip to thank for bringing me closer to God, and for that I am forever grateful. I feel lost without a constant communication with God.
He is there if we want to feel his love. I believe everyone needs to come to their terms with God and it comes from within each of us to open up and listen. We all do this at our own pace. Philip was there to lift me up a bit. Thank you Philip.
As far as my health goes, today was a day of more abdominal pain than usual, so making calls was tiresome. It takes a tremendous amount of energy to look for files, keep notes, log medications, log symptoms, and sort through this maze of potential resources. I really don't want to have to do this, but I need to do it. I need to get this monstrous health insurance debacle cleaned up.
I guess I'm hoping that this pain will ease soon. That's all.
Tomorrow I hope my primary doctor can help me find resources. Then Thursday is the bone marrow biopsy. I know it will hurt, but I'll get through it. I'll beg for lots of lidocaine.
Hugs and kisses and smiles and well wishes to all my friends and family. Thank you God for protecting those I love and for bringing good people into my life.
Denise
I had the pleasure of speaking with Philip today (an old good friend) and he recommended I call the California Dept of Insurance. So that is on my list for tomorrow, before my doctor appointment. It was so nice to talk with him today. It's amazing how we all can make a difference with kindness and care. Thank you Philip for your prayers and I am so happy that your life is full of joy. I have Philip to thank for bringing me closer to God, and for that I am forever grateful. I feel lost without a constant communication with God.
He is there if we want to feel his love. I believe everyone needs to come to their terms with God and it comes from within each of us to open up and listen. We all do this at our own pace. Philip was there to lift me up a bit. Thank you Philip.
As far as my health goes, today was a day of more abdominal pain than usual, so making calls was tiresome. It takes a tremendous amount of energy to look for files, keep notes, log medications, log symptoms, and sort through this maze of potential resources. I really don't want to have to do this, but I need to do it. I need to get this monstrous health insurance debacle cleaned up.
I guess I'm hoping that this pain will ease soon. That's all.
Tomorrow I hope my primary doctor can help me find resources. Then Thursday is the bone marrow biopsy. I know it will hurt, but I'll get through it. I'll beg for lots of lidocaine.
Hugs and kisses and smiles and well wishes to all my friends and family. Thank you God for protecting those I love and for bringing good people into my life.
Denise
Monday, August 31, 2009
grace
Today is a day for thanks. Thank you Judy for giving me Holy Communion, and Loretta at Holy Trinity for helping me with future needs. Thank you Barb for getting me a few groceries. Thank you to the nurse who politely walked me through a bunch of questions, even though I was nervous and upset. Thank you Dr. Javeed and Dr. Lieserowitz for agreeing to start modified chemo sometime next week. Thank you Craig for taking me to the doctor this Thursday. Thank you Judy and Mike for getting me to and from my doctor this Wednesday. Thank you Mom and Mandy for listening and for making preparations for me to go to Seattle. Thank you Mandy for all your hard work trying to get insurance. Thank you Arnie for coming out here in a few weeks to drive my car. Thank you Dad for your thoughts and prayers. Thank you Aunt Deb, Uncle Rich, Uncle Don, Aunt Kathy, Shaun Allen, Aunt Bern, Courtney, Tammy, Marina, Jennifer, Uncle Bud and Linda Lou, and all my family and friends who call or send a note. Even T-Mobile gave me a better plan at a cheaper price. But most importantly, I thank God for his grace.
Today was a day with a lot of physical pain, but I got through it. But today's pain was nothing compared to the total devastation felt by families in Auburn, CA.
Auburn is in the foothills, about 30 miles away. 60 homes and businesses were burned to the ground by a fast moving wild fire Sunday Afternoon. In a flash, those poor people literally lost everything. It was shocking to see parents crying and little kids with no shoes because there was not enough time to grab them. Thankfully nobody was killed.
I have so much to be grateful for and I have been reminded to see it. I thank God for taking care of my loved ones. I am so lucky.
Today was a day with a lot of physical pain, but I got through it. But today's pain was nothing compared to the total devastation felt by families in Auburn, CA.
Auburn is in the foothills, about 30 miles away. 60 homes and businesses were burned to the ground by a fast moving wild fire Sunday Afternoon. In a flash, those poor people literally lost everything. It was shocking to see parents crying and little kids with no shoes because there was not enough time to grab them. Thankfully nobody was killed.
I have so much to be grateful for and I have been reminded to see it. I thank God for taking care of my loved ones. I am so lucky.
Friday, August 28, 2009
good news for a change
Well I first have to say I am blessed because I reconnected with a dear old friend Rebecca on Facebook, and I am eager to learn more about how her life has grown. I knew her in Denver and it is so wonderful to find her again. Plus, Tammy (cousin) has linked my blog to her blog, to help me let others know that my story is one of thousands for women who are either knowingly or unknowingly suffering from Ovarian Cancer. Unfortunately, "unknowingly" is more likely the case.
My surgeon, Dr. Leiserowitz, my angel, called me this morning to provide a modified chemo treatment plan until my Seattle move and insurance problem can be resolved. He is willing to recommend doing smaller doses weekly just through an IV, as opposed to three chemo drugs through IV and abdominal port in large doses every three weeks. He said I can manage myself and partially address the remaining cancer without placing me in a situation where I would be unable to care for myself. He said that he understood my social situation and agreed that it would be best to be with my family. So a modified chemo treatment a great solution for the interim. I must wait to start after my bone marrow test next week, but he said not to wait for the results, just get started. Because my low white blood cell count could interfere with tolerating chemo anyway, it kind of works better to start with a smaller dose anyway.
I asked him about doing a mammogram and he also agreed to that, while I'm covered. I feel bad because I have been literally bugging his staff to get answers and just was getting nowhere. Dr. "L" taking the time to call me and literally spend 15 minutes or more with me, allowing me to interrupt with little questions and comments, tells me that he really is a God send. He elaborated and supported the logic behind this modified solution, caring that my situation was just a terrible drain on me and my family. I love Dr. "L". He asked me if I wanted him to call Dr. Javeed, and I said "yes, please, thank you". So now I feel like I will not be neglecting my cancer while we get me to Seattle. I will only heal well in Seattle and need to be there.
Once in Seattle, they could increase the dose and add immune supporting medications so that I can receive more aggressive chemotherapy, and have the people near me who can love me while I am reeling and healing.
I spoke yesterday with an Ovarian Cancer survivor named "Debbie". I connected to the Share network and she called me from New York. She had Surgery and chemo three years ago, diagnosed with Stage III C Ovarian Cancer, and has not had a re-occurence. Her only symptom was constipation and luckily, her doctor was smart and did a pelvic CT scan.
I'd like to take moments periodically to detail individual symptoms of OC, because again "constipation" usually tells people they need to change their diet, exercise more, get fiber, etc. So, her very intuitive and intelligent doctor thought about other organs aside from just the intestinal tract. We as women, need to accept the fact that our doctors can be and are probably completely idiotic when it comes to OC. I had digestive problems that generated a colonoscopy.
If they would have just "looked" with a different eye and a wider sense of potential causes, maybe I would have ONLY needed surgery. I had abdominal pain, low back pain and intestinal issues for over two years. And, I was told I was too young for Ovarian Cancer.
So if you are a woman who is trying to lose weight, your lower abdomen seems incapable of shrinking, not responding to diet, cardio, and core workouts, and if you have digestive issues, and have looked over the other symptoms of OC (bloating, low back pain, frequency to urinate, fatigue, irregular periods) etc..................................Do not keep trying to treat it with diet, fiber etc. Talk to your gynecologist, be more directed. If they do a CT scan and it's negative, YEAH!!! But if it's positive, you have just been the first person to save your own life.
Ovarian Cancer is literally hidden. We cannot see or feel our own ovaries. My PCP even said "you probably have a small cyst, it will take care of itself on it's own". That was said to me about a year and a half ago. I had other symptoms and still my doctor did not have a clue.
Again, just pay attention to your body and if your gynecologist blows you off and marginalizes your symptoms, get another one if at all humanly possible. It could save your life.
To my family and angels I send my love. To God, thank you for being on our wings. I am so grateful to be finding new light every day.
Denise
My surgeon, Dr. Leiserowitz, my angel, called me this morning to provide a modified chemo treatment plan until my Seattle move and insurance problem can be resolved. He is willing to recommend doing smaller doses weekly just through an IV, as opposed to three chemo drugs through IV and abdominal port in large doses every three weeks. He said I can manage myself and partially address the remaining cancer without placing me in a situation where I would be unable to care for myself. He said that he understood my social situation and agreed that it would be best to be with my family. So a modified chemo treatment a great solution for the interim. I must wait to start after my bone marrow test next week, but he said not to wait for the results, just get started. Because my low white blood cell count could interfere with tolerating chemo anyway, it kind of works better to start with a smaller dose anyway.
I asked him about doing a mammogram and he also agreed to that, while I'm covered. I feel bad because I have been literally bugging his staff to get answers and just was getting nowhere. Dr. "L" taking the time to call me and literally spend 15 minutes or more with me, allowing me to interrupt with little questions and comments, tells me that he really is a God send. He elaborated and supported the logic behind this modified solution, caring that my situation was just a terrible drain on me and my family. I love Dr. "L". He asked me if I wanted him to call Dr. Javeed, and I said "yes, please, thank you". So now I feel like I will not be neglecting my cancer while we get me to Seattle. I will only heal well in Seattle and need to be there.
Once in Seattle, they could increase the dose and add immune supporting medications so that I can receive more aggressive chemotherapy, and have the people near me who can love me while I am reeling and healing.
I spoke yesterday with an Ovarian Cancer survivor named "Debbie". I connected to the Share network and she called me from New York. She had Surgery and chemo three years ago, diagnosed with Stage III C Ovarian Cancer, and has not had a re-occurence. Her only symptom was constipation and luckily, her doctor was smart and did a pelvic CT scan.
I'd like to take moments periodically to detail individual symptoms of OC, because again "constipation" usually tells people they need to change their diet, exercise more, get fiber, etc. So, her very intuitive and intelligent doctor thought about other organs aside from just the intestinal tract. We as women, need to accept the fact that our doctors can be and are probably completely idiotic when it comes to OC. I had digestive problems that generated a colonoscopy.
If they would have just "looked" with a different eye and a wider sense of potential causes, maybe I would have ONLY needed surgery. I had abdominal pain, low back pain and intestinal issues for over two years. And, I was told I was too young for Ovarian Cancer.
So if you are a woman who is trying to lose weight, your lower abdomen seems incapable of shrinking, not responding to diet, cardio, and core workouts, and if you have digestive issues, and have looked over the other symptoms of OC (bloating, low back pain, frequency to urinate, fatigue, irregular periods) etc..................................Do not keep trying to treat it with diet, fiber etc. Talk to your gynecologist, be more directed. If they do a CT scan and it's negative, YEAH!!! But if it's positive, you have just been the first person to save your own life.
Ovarian Cancer is literally hidden. We cannot see or feel our own ovaries. My PCP even said "you probably have a small cyst, it will take care of itself on it's own". That was said to me about a year and a half ago. I had other symptoms and still my doctor did not have a clue.
Again, just pay attention to your body and if your gynecologist blows you off and marginalizes your symptoms, get another one if at all humanly possible. It could save your life.
To my family and angels I send my love. To God, thank you for being on our wings. I am so grateful to be finding new light every day.
Denise
Subscribe to:
Posts (Atom)