Thursday, December 31, 2009
I get to spend my first day of 2010 in the hospital getting chemo. I am grateful for the medication and only pray that I can tolerate it. The cumulative effect worries me but the nurse assured me the additional anti-nausea med will make it bearable.
As for resolutions, my only resolution is to find more grace and forgiveness in my heart. It takes too much energy to be angry and my spiritual development is stagnated by my anger. I can't guarantee that I will be 100% right away, but I promise God and all of you I will put forth my best effort to do so. My previous doctors probably did the best they could, given who they are. I will find a way to move forward in 2010.
My prayers are with each of you in that the pains of 2009 be transformed into new hope, embracing a new opportunity for joy and serenity.
Happy New Year.
Tuesday, December 29, 2009
Yesterday I had the pleasure, or so I think, to visit with the psychiatric clinic intake department personnel. I say personnel because it was an intern who had to be rescued by an experienced psychiatrist (shrink). The visit was bittersweet and emotional. I was angry and grateful at the same time.
It started out with her telling me the intake process and that she was an intern. She was as nice as can be and she offered me the opportunity to do the narrative or questionaire first, so I chose to do the narrative first. I explained my situation and the anger associated with having had incompetent doctors who missed my diagnosis. I spoke of my fears of forever living in poverty once I start to heal. I asked about prognosis, why is there no prognosis. I expressed frustrations about my treatment plan not belonging to me but rather a product of "research" and sort of "off the rack" generalized plan.
About midway through the narrative another shrink came in and just sat down. It was odd, maybe he came in because my voice was loud and carrying through the halls. I had already gotten frustrated at the intern because she asked about my previous occupation. I was upset because she said "there's nothing wrong with being a secretary". I told her not to patronize me and let her know I had already lost one career due to a disability and now I have no job to return to after all this is done. The worst of it being I have no clue how to prepare or create a purpose because nobody has told me how long I'll be here. It could be six months, six years, who knows. I got snappy and said if I were still an OT, I'd be earning 75K per year.
Well then we were talking about Gilda's Club, which seems like a great resource for women with Ovarian Cancer. My problem now though is there intake meetings are all early in the morning and I am still not able to be anywhere before noon. The guy said "oh that's because you work". I got very angry at him and said "if you aren't going to pay attention, don't sit here". Well, I was harsh, but I don't like it when health professionals make assumptions. Then the intern said I don't like it when you treat me that way. I said I wasn 't speaking to her and for her not to argue with me.
After about 5 minutes of arguing with the intern and shrink about how to treat a patient who is angry, we eventually moved on and it's all better. They want to give up on you quickly. If you aren't all wrapped up in a neat little package with a big red ribbon on top, they want to throw you away. I need help.
I will discuss my past psychological trials and tribulations in a future blog. This is not the first time I have needed psychological support (surprise surprise). Being a disabled person can take a toll on your emotional health. But for now let's suffice to say that the team will check with my insurance to see if it covers "talk therapy". I am not a good candidate for psychiatric medications.
In spite of the argument, I feel good about seeking emotional support. I think I really need to handle my anger about my cancer and the previous medical yahoos that ignored me. I desperately want to discover my life's purpose. I think sometimes I could become an advocate and raise awareness for Ovarian Cancer, but that needs to translate into a JOB. I want to work from home.
The shrinks advised me not to think too far ahead and simply try to live each day one day at a time. I am trying to do that, I really am. I just get so worried.
I also today agreed to do another round of Cisplatin and Taxol in the hospital. I go in on New Years Day. I spoke with Dr. Gray's nurse. I told her how miserable I was and expressed the pain associated with the nausea was overwhelming. She said they will give me an additional drug for nausea and hopefully I will be better able to manage the side effects. The doctor is not comfortable stopping platinum drugs yet because according to "research" I have not had enough platinum drug therapy.
I am a small person, I just wish they could customize my treatment plan a little better.
Anyway, if I still have a terrible experience after adding the additional medication, then they may consider discontinuing platinum drug therapy. We'll see. I pray the additional anti-nausea med will do the trick. I really do hope it works.
Love you all,
Monday, December 21, 2009
I have not been writing because the blast of Cisplatin, combined with a poorly timed dose of Taxol, wiped me out. For days I was so full of nausea and severe fatigue. With Christmas to prepare for, the one grace is that I have no chemo this week. I feel scattered today, my words do not flow in any organized fashion.
I want to stay focused on what gives me gratitude, such as the kindess of our neighbor who brought over spaghetti. My home minister Patricia who is so dedicated, brings me Holy Communion every week. My family my family my family. Not enough can be said to honor the dedication and sacrifice my mother, Mandy, Patrick and their children have made to accomodate my hospitalizations and chemo schedule. I love you all so much.
This Christmas I will be rejoicing in the celebration of the birth of Jesus, and praying that we all remember that Jesus is in each of us. With that I will pray that this new season will bring all of us to love one another more deeply, treat each other with more kindness, and have more compassion for our fellow human beings. I will be thanking God for I have been the recipient of such grace over and over again from friends, strangers and my loving family. I am so blessed and fortunate. I wish all of you a very blessed holy Merry Christmas this year. Love, Denise
Friday, December 11, 2009
Now I request prayers for my dear mom. She has had Type I diabetes since age 23, for 40 years. She has been on an insulin pump for 10 years. Now her pump is causing her pain and she is running out of "pain free" space on her abdomen to place the pump needle. She needs to see a diabetic educator to see if they will be able to help her better use the pump, but my mom is doubtful any educator will be able to solve this problem.
My mother provides me food, shelter, daily support and love and acts with grace each day to help me heal. She is under a lot of pressure though and deeply misses her friends and social life. Her diabetes has made it hard for her to be free to do what she wants to do on her timeframe. Her pump is the only device that can control her blood sugar levels. I pray deeply for her to find happiness and healing with her pump. Her pump is her lifesaver and it needs to work.
Please help me pray for my mom.
Friday, December 04, 2009
Like me, he could benefit by receiving top notch surgery or radiation or chemo, and clear his body of this illness. I pray for them and for their doctors, that they are able to quickly and thoroughly treat his myeloma. Love you guys.
On a side note, due to my allergic reaction to carboplatin, I now will need to receive a new platinum drug in hospital next week. My doctor wants me to take cisplatin, and it requires being hooked up to IV fluids for 4 hours to prepare the kidneys. The cisplatin causes kidney failure unless you are thoroughly hydrated. My doctor said that she didn't want to chance any further allergic reactions to carboplatin, because it could be a deadly reaction the next time around. Scary.
The other down side of cisplatin is that it causes more nausea, so I am definitely not looking forward to that. I plan to psyche myself up and mentally prepare as much as possible. I am sure that the anti-nausea meds will do as much as possible and I will just pray that I don't have too much of a reaction. I am very disappointed that I have to be hospitalized for this upcoming chemo treatment. It will be more expensive and just the nature of the treatment is intimidating. I do know that the U of W hospital is very nice, staff very professional and that I will be made as comfortable as possible. Bless my sister Mandy, for she will stay with me.
Love you all,
Tuesday, December 01, 2009
They had trouble drawing blood from my port, so consequently had to stick me in the arm three times, but that was OK. I received two rounds of antibiotics and IV fluids for dehydration. The last time I had chemo I had a fever too.
Towards the end of this round of chemo on Friday, I had a reaction to the carboplatin. My hands itched and I got red spots on my face. I received benadryl, but later that night I had chills so bad I had to sleep with a heating pad. Then my fever of course spiked. I really didn't want to go to the hospital, but it was the right thing to do. I am worried about money.
Results are they found no infection, so I am clueless as to why I had such a high fever. I still have nystagmus. Luckily I see my gynecologist, Dr. Gray, on Thursday. Hopefully we can resolve this because I can't afford to keep going to the ER or being admitted to the hospital.
I had a breakdown yesterday in the SCCA clinic. I went to get my neupogen shot and I was accidently deleted in the system, after I checked in. After two hours, I was fit to be tied, angry and just started yelling. Not a pretty picture. Today I asked for emotional support and a referral to psyche.
I feel so lost because my energy is so low. I have very little of a "life" in terms of future employment and cannot visualize what my life will be. I want to be in church so badly. I desperately need to find my life's purpose and commit to good work. Maybe a psychologist can help me start on my way.
I do not want to be placed on antidepressants though, that is not the solution. I need real guidance.
Love all of you and thank you Mom and Mandy for watching out for me when I can't make good decisions on my own. I really didn't want to go to the hospital, but it was necessary.
Love you all.
Wednesday, November 25, 2009
My adorable sister Mandy, who has literally re-arranged her life to help me with getting through this challenging time. I am so grateful to her, she religiously takes me to chemo and is there every time I need her. She has a beautiful family and business and has so graciously helped me manage my situation. For getting me health insurance, what a blessing. I love you and am so so blessed to be able to spend time with you, Pat, Laria and Addie. I pray for your peace and happiness every day.
My brother Arnie, who is a rock in our family. Whom was right there to help me when I needed it and always sends a message of hope and love. So responsible and helpful and I don't know what I would have done without him to help me get my car and stuff to Seattle. I pray that your family has serenity and union every day. I love you.
Aunt Debbie and Uncle Rich, for all their love and support. My Aunt Debbie sacrificed her time to stay with me in Folsom after my surgery. At this time of uncertaintly, my prayers are with you.
My friend Barb who helped me prepare for my move to Seattle and with errands while I was recovering from surgery in California. Craig, my ex-honey, who drove my belongings to Seattle from Folsom. What a generous feat and it was so nice to spend time with him in Seattle. My Uncle Don and Shawn Allen, and Aunt Kathy who call almost every day. Thank you. Aunt Bernie, Courtney and Uncle Bruce, I know how much you care and your notes of support have been so much appreciated. Mike and Pier, who made several runs to the airport for my family, while I was in surgical recovery. Judy Grondin, a minister from church, who took me to appointments in Folsom.
My pastor MSR Kidder, who blessed me with the sacrament of the sick on several occassions. God Bless. Philip Corollo who offered kind words of support and encouragement from afar. Randy Fann, for all the help with moving me around while Aunt Debbie and Mandy were in Folsom. Russ and Teresa Tuttle, for giving me my job and creating a way for me to have ongoing insurance. Tammy and Chris Gabel, Marina Krikorian and Jennifer and Jim Alvarez for all their kind support. My renewed friendship with Rebecca Moore and Jennifer Tesone. All the rest of my family, including my father. My new home minister, Patricia Davis, for coming to my home to give me holy communion. My doctors and nurses at SCCA, I love you so much. The doctors and nurses put patients first and make me feel special.
I hope that I have not forgotten anyone. Happy Thanksgiving to everyone!!!! I love you!!!
Saturday, November 21, 2009
No run to the emergency room though. I am grateful for a better day today. The nausea will start to kick in on Sunday, third day after chemo. That is when the IV drugs wear off. Happy day.
The good news is I get Thanksgiving "off" and have treatment on Friday. I'll need to not eat a lot though, still have to stick to small amounts of food. That's OK. I am looking forward to a special day of Thanks for all the blessings in my life, especially family and friends. What more does a person really need?
Thank you to all of my supporters.
Tuesday, November 17, 2009
The bills are starting to trickle in, and basically it costs over two thousand per week just for my immune therapy. Over seven thousand per each chemo treatment. The port was about sixteen thousand. I am still in therapy and wonder what the final tally will be. My insurance has a high deductable but eventually caps. What a relief that is. I can't worry about the money, but I do.
I am applying for financial assistance from the Seatte Cancer Care Alliance, I just hope I qualify.I am bummed because I have the "wrong" cancer. I called the American Cancer Society again the other day to look for financial resources, and of course, none for me. Gobs of stuff if I had lung cancer or breast cancer, and I just thank God that I have none of the above. My cancer cup is full right now.
Here is my opinion: Support services and financial aid should be for all cancer patients, not just those with the loudest marketing genies. I understand that research dollars are generated through fundraising, and fundraising is done by "non-profits" who are married to a particular type of disease. So if you have a rare disease, or a low-profile disease, you are less likely to find support for things like "bills".
So, today I am feeling down. The ACS is sending me a packet, we'll see what they send. In the mean time I wrote a note to Ellen DeGeneres asking her to do a show on Ovarian Cancer. She has low back pain and I wanted to let her know that LPB is a symptom of OC. I know I am sounding paranoid, but that is what OC is about, vague symptoms that if left unattended, can kill you. So maybe she will listen and really have her pain checked out.
I have chemo this week. Not too excited but feel lucky to have it. Love you all.
Sunday, November 08, 2009
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
Tuesday, November 03, 2009
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.
Friday, October 30, 2009
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
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.
Sunday, October 18, 2009
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.
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.
Wednesday, October 14, 2009
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".
Wednesday, October 07, 2009
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!
Thursday, October 01, 2009
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
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
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
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!
Wednesday, September 09, 2009
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.
Sunday, September 06, 2009
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. 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.
 American Cancer Society. Cancer Facts and Figures 2009. Available at http://www.cancer.org/docroot/STT/stt_0.asp (Accessed August 27, 2009).
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.
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.
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:
•Loss of appetite
• 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.
 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).
 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
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.
Tuesday, September 01, 2009
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.
Monday, August 31, 2009
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
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.
Wednesday, August 26, 2009
I was so wrong. First of all, the woman had no helpful information on Cobra or HIPPA. More importantly, she told me that they had no resources for women with Ovarian Cancer.
During our conversation about insurance she said "we do have a co-pay assistance program that may help you". So when she was finished providing me no useful or helpful information to help with insurance I asked about the program. She was so happy to promote it and described in some detail how beneficial it is because it relieves the burden of some copayments.
Then she asked "what kind of cancer do you have again?" I reply, "Ovarian Cancer." She says, "well maaaaaaam, Ovarian Cancer is not on the approved list." I was shocked and asked her to verify. She checked again and told me that my cancer is not covered under the copay assistance program. After taking a few seconds to control the fumes coming out my ears (which by the way is not good for my healing process) I said, "Do you cover lung cancer?"
Well she couldn't control her enthusiasm enough. "Of course we have programs for lung cancer, we have lots of programs for lung cancer." Now, don't get me wrong, not all people with lung cancer get lung cancer from smoking. Several years ago some people still didn't believe smoking caused lung cancer, today we know better. I would never wish lung cancer on anyone and pray that not one more person gets lung cancer.
BUT............are you kidding? So I say to her "so you're telling me that if someone smokes and is knowingly potentially giving themselves cancer, you have lots of programs to help them, but me, having Ovarian Cancer, which I didn't cause, gets no help!"
She started to try to explain and I interrupted her asking her if she had anything of value to say, she didn't say anything and I hung up on her.
Today my homecare nurse said that there is a program in California for men who have prostate cancer, and if they come here from Mexico, they get free treatment.
What the heck.
So I called the American Cancer Society again, told them the story about the Patient Advocate, and she apologized profusely and stated that Ovarian Cancer has little funding, little awareness and that there really aren't a lot of options. She gave me three programs to call.
THREE! So I am going to pray that one of the three can help us ease this financial burden and help us with this transition. I have to do chemo and the only place I can go for treatment is Seattle. I don't have a choice. My insurance won't cover Seattle.
Ovarian Cancer is just like any other cancer, it hurts, it destroys lives and requires chemo in the advanced stages. Why are we discriminating against Ovarian Cancer?
Just a thought. By the way, Paige (my homecare nurse) was awesome, so helpful. Goodbye Paige. You were a blessing to me. Thanks Barb for the help tonight.
Thank you Mandy so much for helping me navigate this mess. You are my dear sweet sister angel who is saving me. I love you.
Please God watch over and protect all my angels.
The irony for me is that his office was on my list to call today, literally. I jotted his name down yesterday and said to myself "Senator Kennedy is on my side, maybe his office will help". What a tragedy for those of us who believe healthcare is a right to all living beings. I am so very sad that our hero for the rights of the disabled, disadvantaged, and oppressed, is gone. He is in a better place and I hope that God will help us find someone who can carry the torch.
Mr. Kennedy, I love you and you are a savior to many of us who have been confronted with challenges beyond our control. You spoke for me and I will miss you.
Saturday, August 22, 2009
I feel like I should be in a "Sicko" sequel. I want other women to learn from this. Don't let your doctors take control of your life, don't let them dismiss or marginalize your problems. It could kill you if you do.
I just turned 45 on July 2, 2009, and on my birthday I picked up my CT Scan and radiology report. Happy Birthday to me. All I know is that it was probably the most depressing birthday ever. On June 19th I was sent for a pelvic/abdominal CT scan because I had swelling and pain in my pelvic area. I was referred by my gynecologist, who had not done a pelvic exam on my previous gynocological appointment. I had started feeling these kinds of pains over the past several years, but my complaints never generated the proper treatment. Colonoscopy revealed only melanosis over a year ago. My primary care physicians have been clueless and not one gynecologist picked up on the cancer. You don't wake up one day and all of a sudden have Stage IIIC Ovarian Cancer!
Dr. P (gynecologist) called me on the 19th at 4:30 pm to tell me “you were right, there is something wrong with your ovaries. Your ovaries are 10 cm long and there’s some abnormal tissue". Pause. I ask, “do I need surgery”? He says “most likely”. I ask “how long will I be out?” He said probably six weeks and I’d need the surgery “right away.”
The end of next week comes, I see my hematologist, Dr. J. Before he tells me what we need to do, he asked me what did Dr. P. say, so I told him what Dr. P. said then he says I will need a hysterectomy, that the ovaries have small tumors and there may be something in the lymphnodes. I asked him how big the tumors were, he said they were small. So I was happy because I thought “well, we caught it early”. He informs me he wants me to see Dr. D at "...". I said I had problems with "...", but that was OK with him. He said I needed surgery “yesterday”. I told him all my family is out of the area and that I have no local support. He assured me that he would get me a social services consult when I am referred to the surgeon.
The next morning I went to the lab and they took what looked like 9 viles of blood.
I saw my primary the next Saturday. I waited an hour in the lobby, and by the way this whole time I have been in severe pain, of abdominal bloating, unable to eat any meal other than breakfast. I have nutrition shakes for lunch and dinner. I was lying on my back in the exam room and the first thing my PCP does is tap my belly, saying “what are we going to do about this?”. I almost cried it hurt so bad. She looks at me and says “What have the others told you?”. I said what each doctor said, in sequence. She paused and said “I am going to tell you the truth”. Your tumors are 10 cm and you have other tumors and possibly mets”. I just looked at her and said “how could this have been missed?” She had a blank look on her face and said “I don’t know”. She had been having a bad day because they overbooked her, because usually she is joyful and takes time to talk. She went on to say that they will do a total hysterectomy and chemotherapy. I said all my family is out of the area, southern California and Seattle, and Colorado. OMG!
I expressed the PCP my worries about the future. I already live a meager existence. I rent a room in a home and have been isolated because of my weak immune system. The home is nice, I have a womderful view of Folsom Lake. But as a grown woman, all my posessions can fit in a small truck bed. I have no privacy, no music, no room to dance, cannot cook or live my life freely because of my shared living arrangement. All of us in the home are compromising our freedoms due to the economy. Rent in this area is very high, and all I can afford is a room. I have lived this way for almost 10 years. The only exception was the short time I was with an old boyfriend, and I had an apartment to myself. I feel like a prisoner. Plus, I live with two bachelors who are less than enthused with my physical ailments.
She twisted the knife in my gut by telling me that my best hope will be to go on disability, file for bankruptcy and basically live in poverty. She tried to tell me that she knew other women who had survived ovarian cancer, but all of them were married, and didn’t have to work. They had people to help them and did not have to worry about money. I am alone, and already poor because of my disability. I am one step away from living on the street.
She had no answers. All I could think about is that I have had the symptoms for several years and not one doctor thought about ovarian cancer. I even asked over and over and over, “Have you checked for ALL cancers?” “Are you sure”. I was “too young” to have ovarian cancer they would say. Not one physician in the past three years has looked for ovarian cancer. Now I’m possibly in the last months of my life, but I try to remain hopeful.
She asked me if I wanted anti-depressants. I said “Do I look depressed? I’m pissed, not depressed!”
I went alone to my surgical consultation July 14th at 3:00 pm. All I can say is thank the Lord for speaker phones. I chimed my mom and sister in when Dr. L told me the news. He did an exam and then said I needed a total hysterectomy with removal of my omentum. Then we talked about the possibility of me coming out of surgery with a colostomy bag. Horror of all horrors, but thanks be to God that he was able to remove almost all of the tumors without removing any intestine. It lasted over 4 hours, and he removed multiple tumors including my appendix. My appendix had a major tumor! How could this have been missed???? My surgery seemed to take forever to happen. It was 40 days from June 19th to July 29th. It was like going through Lent all over again. I suffered.
Before surgery, I worked as much as humanly possible, taking minimal sick time. Sometimes I couldn’t even stand up straight and needed to hang on to counters and chairs as I walked along. I had to ice my tummy every day, practically every hour because the pain and ascites was so bad. And running errands to prepare for surgery was just pure agony. Because we didn’t know on a day to day basis the surgery date, I had to constantly be running to the store. It was so hard to prepare.
My family had been trying to figure out what to do and we couldn’t make any arrangements until I had met the surgeon. My employers were already scheduled to be gone most of July, so I had been wearing myself out at work typing a training manual for the temp worker. Everything was in limbo. And the worst part is that not one person held me tight to allow me to cry. During this time I had fallen in love and had my heart broken by rejection too. How much can a girl take? My heart was aching, my body was aching and my soul was drained. And I knew that if I needed chemo I was going to really be in trouble.
The saving grace was bing able to go to Church and receive communion during the week and be able to cry with God. One day I just leaned against the wall of the church so he could hug me.
On July 29, 2009 Dr. L was pleased with “optimally debulking” my cancer. Recovering from the surgery has been tormenting, but with the grace of God and my family, I am making it. My sister Mandy stayed for a week and my Aunt Debbie is leaving on Monday. Barbara is checking in and I have a few friends who have helped out. I would rather have few solid true friends than many "frenemys".
My CA125 went from over 2700 to 241. Yeah!. Dr. Lieserowitz saved my life
The Ovarian Cancer should have been caught. For several years my biggest complaints to my doctors have been abdominal pain, severe extreme fatigue, irregular and very heavy periods, moodiness, and needing to be religious about my bowel routine to avoid problems. I had gas problems and could tell that when I was ovulating, that I was having unusual pains. All of those complaints were either mis-directed or ignored. Three pap smears revealed mild dysplasia and HPV. How could they not think that Ovarian Cancer was possible?
I have started taking heavy doses of probiotics to help me boost my immune system. I have had a severely compromised immune system and severe anemia for several years, with my “treatment” being to “isolate myself”. I was told that if I get a fever and chills I must go to the Emergency Room. The only places I have gone for two years are the store and Church. I work full time, and have few friends. I never go anywhere and have not been dating. People think I am “OCD”. It just hurts.
IV iron treatments only temporarily relieved the fatigue that destroyed my social life and potentially threatening to my job.
My severe anemia has caused me to experience severe social consequences. I have tried to explain to people that I have lived with or worked with in the past, and present, that I’m too tired to do things. I have been called a “loser” because I haven’t gone out to bars or to socialize. I am ridiculed because I have isolated myself, and appear anti-social because I’m simply too tired to do anything. Sometimes when I get home from work, I’m too tired to even check my e-mail. I get bursts of energy every now and then, and up until 3 weeks ago, I was determined to at a minimum, walk a few miles 3 days per week. It was a real challenge to get out the door, but I needed the exercise. In 2007 I just stopped being able to walk 4 miles per day. I told my doctor and she just didn’t take it seriously.
As a matter of fact, I was placed on anti-anxiety medication to help me cope with my extreme fatigue and the social problems related to the fatigue. Looking back, for goodness sakes, the fatigue was a huge glaring red flag that was completely ignored.
I will go so far as to say that severe anemia has destroyed my social life to the point that I am literally hated by other people. People can be so condemning and judgemental.
I have had rheumatoid arthritis since age 15. Being disabled most of my life, I have always strived to work, be a contributor to society, and not a burden to the tax system. My younger years being wrecked because of having arthritis, I have always had poor self-esteem and don’t know what it’s like to feel or be beautiful. I missed prom because I was so ugly from gaining Prednisone weight, and wearing braces on my hands. When I was 17 or 18, my rheumatologist told me not to have children, because I would not be able to take care of them. That depressed me and I think that not being able to have children and being disabled has made it hard for me to find love.
In 1995 I was forced out of my career in the health care industry because of an arthritic flare and minor shoulder surgery. The whole process was shady. I was taken to an empty office space in the human resources department. I was forced to sign a letter to Health One that I would not sue them. I was so stupid. I trusted that my employer would find some kind of work for me to do until my condition improved to work full time, but instead I received two month’s pay. I was in bankruptcy by the end of the year and since then I have NEVER been able to afford my own apartment.
After going 10 years without insurance, trying to earn money with unsuccessful jobs, I finally found a good temporary job in 2006 with minimal insurance and then landed a good steady job in 2007. They offered me Western Health Advantage and for the first time in many moons I had good insurance, not some insurance coupon program. I have one credit card that is over 5K just from old medical expenses. And, I had to pay taxes this year. I’m on the fringes as a working disabled person, that’s all I can say.
I consider myself a modern day nomad, renting rooms in homes, because all I can afford is $600 month for rent.
To sum up the life I have lived, I have always strived to be responsible and hard working. I have to fight for everything and feel completely beaten up by my older doctors from in Folsom, feel badgered by people who misunderstand my fatigue as a personality flaw, feel abandoned by my insurance and am very uncertain about any future. I don’t want to be financially devastated by this cancer, when it could have been caught earlier. Earlier detection could have meant no chemo and back to work in 6 weeks. Instead, I have no idea when or if I’ll return to work or live. All I can do is enjoy the sun, try to laugh and feel love from God, family and true friends each day.
Denise Archuleta (mouse)
Friday, August 21, 2009
Unfortunately though the reality is that the past two days are literally out of hell. I am so overwhelmed with paperwork and decisions, confusions and resistance to change that I am in tears most of the time. I even got into an argument with my loving sister and mother because we are so distressed about insurance, chemo and moving. Today I faxed a letter to Barbara Boxer, asking her to help me find a way to get my insurance company and the Seattle Cancer Care Allliance to work together and cover my chemotherapy. It is ridiculous that my current insurance, employer sponsored plan, that I have been paying into, will not make an exception to help me. I have begged and guilted my family as much as humanly possible to find a way to see if anyone in my family can take care of me in my covered service area (northern California). NOBODY FROM MY FAMILY CAN COME TO NORTHERN CALIFORNIA. Western Health Advantage is putting us through hell.
So now that it has been decided that I will apply for another insurance, no guarantees on acceptance, I am now going to face financial ruin on top of dealing with chemo and the uncertainty of any meaningful life. I AM SO ANGRY WITH THE DOCTORS I HAD IN 2007 AND 2008. They missed my cancer. My surgeon got almost all of my cancer but my oncologist re-stated again that chemo is absolutely necessary. I can't just live, I have to still suffer the chemo. And there is no guarantee that I will even tolerate chemo because I am neutropenic, severly so.
We need a law that mandates insurance companies to provide coverage out of the regular service area in special cases like mine. We also need insurance companies and the gynecology community to cover and provide annual pelvic ultrasounds so that women do not get to Stage 3C cancer before diagnosis. I am so angry so angry so angry. My old doctors will continue to live their lives while I fight to stay alive. Ignorant incompetent doctors should not be allowed to practice. I had symptoms, they could have used their brain and looked for it.
I have already sent a formal request to the California Medical Board and hope that they have results. I don't care if it is "common" for Ovarian Cancer to be missed. Ovarian Cancer should be "uncommonly missed" and the only way to get there is for people like me to yell out to world that Ovarian Cancer is a real threat and a true "silent killer". This is a battle worth fighting.
I sent a letter to my congressman and even called the news. I will not stop.
I NEED HELP WITH SETTING UP A FUNDRAISING SITE. My family has already spent thousands of dollars in airfare, hotels, supplies, and will be spending much more when I get to Seattle. I need to raise money to help with these costs. I'm not the type of person to beg, but this is legitimate and we need all the help we can get.
If anyone can help with establishing the proper links for raising private money, I would be eternally grateful (eternally may not be that far away).
I also need to never have a day like today again. I cannot afford any more anger and fighting. I need to heal from my surgery and I need to find a way to cope with this stress better. I have placed a request for a patient advocate and have spoken with the American Cancer Society. I am slowly learning the ropes, but it is not a quick process. Thank you Mom, Mandy, Pat, Arnie, Aunt Debbie, Dad, Aunt Bernie, Uncle Don, Shawn Allen, Laria, Addie, Shelby, Raymond, Michelle, Courtney, my friend Barb, Randy, Craig and all the people who care about me. Thank you Dr. Lieserowitz.
I love my family and am so sorry for being such a pain in the butt, but I am not eager for poverty, I am not eager for chemo, and not eager for more pain. But I will get through it, other people have. I want to see Laria, Addie, Shelby and Raymond graduate, get married, have kids. I want to see my brother and sister become grandparents. I want to be here. I love living. I want to see everyone in my family again. I want to hug a dolphin. I want to go on a cruise. I want to be in the warm ocean. I want to live.