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.

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

no help for those with ovarian cancer

On Monday, I got a call back from "Patient Advocates" who were referred to me by the American Cancer Society. I was so relieved and excited, thinking, "yeah, someone who can help me and my family get through this insurance nightmare."

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.

Love,
Denise

A Salute to Senator Ted Kennedy

Today we lost an amazing human being capable of giving beyond what any human should do. Senator Kennedy cared so much for others and he is gone before he could see his dream become a reality. We need to continue the fight so that all people can have access to affordable quality healthcare, no matter where they live or where they need to go for treatment.

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.

Love,
Denise

more of my story

To Anyone who will listen:

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)