here we go again

Well, it's been one heckof a week. I'm all teary eyed because Craig returned to California today. He arrived Monday with his SUV packed full of my "stuff'. He drove alone, and I am still blown away by his generosity. I am blown away by everyone's generosity. He got to spend time at the music museum, see Jimi Hendrix' statue and we spent time at Pike's Market. We went to dinner after a walk on the beach at Golden Garden's park. We ate at Ray's cafe. I was in so much pain, and really wish I could have done more. He seemed happy and I am so so grateful for his time and energy. It is so hard to say goodbye to people you love. He will come back soon I hope.

Tomorrow I resume chemotherapy. My beautiful sister and mom will help me along for this long day. The time table is longer, but having a private room or area will make it bearable.

I will be treated with Taxol and Carboplatin this time, twice the medications. I am a little nervous about it, because I am generally sensitive anyway. I'm praying it will be OK.

I am still busy wrapping up details from California, and arranging alternative transportation to ease the burden with mom and Mandy. As it turns out, I do need to go get neupogen shots at least three times weekly, in addition to chemo three times a month. Sometimes I just want to curl up in a blanket and just sleep for a year. Just put me in a coma and kill off the cancer. Wake me when it's over.

I can't wait to see Laria, Addie, and Pat. It will be a week tomorrow, and it just takes time to settle in. I miss my friends. God has been good to me. I have a great family and I know I am in the right place to heal.

Seattle is incredible, green, and very diverse. Nutty to drive here though, just a maze of streets all over the place. Every house is different. Streets are narrow. Neighborhoods have their own pulse and energy, so eclectic.

Well, off to another shot of chemo. I will check back in a few days. I love you all and thank you for your support!

Love,
Denise

hello Seattle

I am so grateful to my brother, sister and mother for literally carrying me to the pacific northwest. Mandy and I landed yesterday and I have already met my fabulous oncology team. Dr. G is wonderful. She and her team spent 3 hours with mom, Mandy and I asking questions, getting to know me and truly took a sincere interest in our care. Mandy has been a bundle of joy.

Moving from California has been so draining, and dealing with daily doctor appointments and housemate conflicts has made this time of my life a real challenge. My friend Barb came by with Chinese food on Tuesday evening to say goodbye. She cut my hair short and sassy. I'm ready with scarfs and hats. just need a wig.

It looks like I will still be doing weekly or bi-weekly chemo because of my fragile blood counts, but here I feel like I am going to be well taken care of. There is a nutritionist available and all kinds of support to help me and my family along the way.

Seattle is so extremely different, like night and day. So fresh and green. The air is crisp and the trees are tall. Every house is unique and it seems "friendly" here. I am looking forward to creating my new home.

I was so excited because I got to see one of my nieces yesterday. I will soon get to see the other little angel and Mandy's husband. I am so thankful to God for my family. I can't do enough in return to express my deepest gratitude for getting me to this place that I can now call home.

I will be able to heal here, I can feel it. I have a long way to go, at least 6 more treatments, possible still another 18 weeks. I'm ready.

I love you Mandy and Arnie!!!!! Love you mom!!!! Will miss you Barb!!!! Will miss you Craig!!!! Will miss you Mike and Pier!!!! Will miss you Russ and Teresa!!! Love you to the rest of my family. Love you all.

transitions

Today will be a very blessed day. This morning I saw my brother off to Seattle. He flew in from Colorado last night and is driving my car to Seattle today. Then this afternoon my sister is flying in from Seattle and on Wednesday we will fly to Seattle together. It was so hard to say goodbye to my brother, Arnie. I hadn't seen him in forever, it was too short of a visit. It was soooo good to spend time with him. I have a great brother. I have a great sister too. Mandy will be helping me wrap up final details. My ex-boyfriend Craig will be travelling with his son on a future date to move the rest of my "stuff" to Seattle.

It has been trying to sort and pack and go daily to the doctors office. I just had a chemo treatment this past Wednesday, and am wiped. The lingering abdominal pain from surgery really gets in my way, but each day it's teeny tiny bit less.

One struggle I wasn't expecting was an argument with my previous gynecologist (not my surgeon). We'll call him Dr. P. I had been seeing this gynecologist (Dr. P) since March. He did not do a pelvic exam on my initial visit. I guess it's fair to say I kindof blame him for now, but blame will not heal me. The argument came as a result of me being denied a copy of my "complete" file. They originally mailed a partial copy of my medical records. When I called two days ago to get a complete copy, they refused. So I literally had to go into his office after my lab appointment, and demand the copy face to face. I had to call the Department of Managed Care right on the spot, just to get them to agree. I have never been refused a complete copy of my medical records by any doctor, ever. His refusal to cooperate only makes him look guilty, he knows he could be held responsible.

I am not saying that I have legitimate grounds for charges, but I do want him to think hard about my case. I want him to be more alert when he does his future examinations and be more attentive to the symptoms of Ovarian Cancer. His staff acted like they don't even care, and all they cared about was that I was "rude" for demanding my records. It's as if they truly could have cared less about me as a person, that's scary.

So our words of wisdom here are, if you are not feeling like your doctor cares at all, and if you can switch doctors, do it. I really believe that their level of quality care is to the extent that they and the staff care about you as a patient and a person. This guy didn't care.

So now I am off to Seattle, starting a new life, being with family and have a chance to start over with new doctors. I will make every effort I can to help them care about me as a person, I need them to care.

Thank you Mike and Pier for picking my brother up from the airport and thanks Barb for helping me get the car packed. Thanks Craig for taking me to chemo again and for helping me get my posessions to Seattle. Thank you Mandy for flying out here and being with me these last few days. I love you all!

chemoland

Hi everyone,

I had a respite from blogging because I started chemo, and have been a bit on the down side. I have been required to get a daily lab draw, and injections of Neupogen to boost my immune system as needed. My patience has been on the thin side, sitting in the waiting room every day. AND, I still have to do all the things you normally would need to do if you were moving. I am exhausted, didn't even make it to church today. I get another dose of chemo in three days, and really can't say that I'm excited. The blessing here is that I CAN get chemotherapy and that it could finish the surgeon's handywork.

The side effects kicked in about 24 hours after the treatment. I got nausea just pressing on my tummy, not fun. My fatigue is over the top, but I'm managing. Nothing tastes good and I still have to be careful about what I eat. I still have abdominal pain from the surgery!

I have been informed that I will start losing my hair next week. Not sure what to feel about that either. I went looking for a scarf or wrap yesterday, no luck. Too tired to shop around. Hair grows back, so it's not too big of a deal. The thing I am dreading is feeling sickly. THAT I can do without. I don't do "sick" well, never have. Pain, I have been able to manage, but "sick", not so much. Hopefully I will be able to DEAL and find ways to get mental and spiritual control over the side effects of poison streaming through my body.

I have met so many wonderful people who have suffered through chemotherapy and they seem to be doing well, and look "alive". So I keep their images in the back of my mind.

I get to see my brother and sister in less than a week! Yeah! I am praying for their safe travel. I am so excited to see them. This week is going to be very busy, getting the final preparations made for moving, while each day getting lab work, or chemo, or iron treatments. It is a bit exhausting. There is still so much to do, sigh.

Hopefully I can visit my church after my IV iron treatment on Monday.

This must sound so boring, but it is my life now. Managing my cancer has suddenly become a full time job, literally. Managing meds, keeping my journal, daily appointments, trying to get to the store, what to eat, can I eat?

Someday we will treat cancer not with poison, but with intelligent nano-medicine, that only destroys cancer cells. That technology exists already, I just wish it was in use today.

I thank God for my family and friends. Thank you for getting me through this nightmare. Love, Denise

answering prayers

Well, this is a note dedicated to Mandy and Pat, for they were the ones who worked tirelessly searching for insurance. Well, we may have struck oil on this and I am eternally grateful to my sister and her husband, for I could not have done that work.

My surgery had me so incapacitated, they had to do the legwork for me and now I don't have to worry about trying to find a way to receive chemotherapy in northern California. We received an acceptance letter, but need to wrap up details, so it's 99% complete!

I don't want to jinx this by giving away details. I have been in a stupor since yesterday. I am shocked, excited beyond belief and sketptical all at the same time.

I believe that I am on a river, in a well guided canoe, and we are coming upon rough waters, but after those waters lies a calm flow, where I can gently rest upon the shore. I am not in control of this canoe, it is God. I believe this to be true, fully in my heart and soul because every step of the way of this journey has caused me to demonstrate resistence to all these changes, enough that would make anyone want to quit on me.

My family has stuck with me and prayed. My friends, old and new, are praying. Members of my church are praying, and of course I am praying. I pray mostly for those who have to deal with my emotions, which are everywhere.

I thank God and Mandy and Pat for this critical component of my recovery. I am so excited that I can be with them and my mother, and get through chemo with support.

God wants me in Seattle, that's all I can say.

Thank you all for your support. I start chemo on Monday, just a light dose, so I should be fine. I guess we'll see. My brother is coming in a few weeks, can't wait to see Arnie. Yeah! And then Mandy and I will be on a plane.

I'm nervous and excited. My life is literally starting over. Thank you again!

Love,
Denise

President Obama

Hello everyone,

First of all: thank you family and friends again for all your love and support. I am limited on energy for a good reason, now I can drive. The only problem is that it kills me to drive, still painful and exhausts me. Too exhausted to talk this evening. Luckily the driving is all within 5 miles (Dr. Office, post office, store, pharmacy). I was so tired at Target that I had to rest on the lawn chair display.

I am very happy though, because I have seen cows, horses, restaurants, parks, people. Wow, I forgot what john "Q" public is like. So today I am gratefully accepting my new pains that have come with a dose of freedom. I have received two shots of Neupogen to boost my immune system, and will need a blood test each day this week.

President Obama tried this evening to send a message, let's take care of each other without bankrupting ourselves, businesses or our country. Personally, I think the most charitable, humane, and democratic solution requires that we restructure the entire health care system and have socialized health care. BUT, that is not realistic. I LIKE WHAT OUR PRESIDENT HAD TO SAY.

A Public Health "Exchange" was what I heard, as opposed to "public government option". If I am wrong, go ahead and correct me. I like the idea of the individuals being able to "coop" into a larger plan as individuals so that they can pay rates comperable to individuals who receive employer sponsored health insurance. But there are many citizens who would not even be able to afford that. The "working poor" may still lose out, but I pray that is not the case.

It is just so hard to defend profit driven health care, but America is based on opportunity. I guess if it doesn't work out, I can move to Canada..ha!

So I wish our President the best and pray that the Legislative branch of our government stops bending over for the insurance and drug companies, and starts bending over for their consituents. Isn't that why they are there, to serve the public? That wasn't very dignified statement, was it. Oh well, I want them to be on my side, your side, your family's side, so that we can all be healthy.

Nighty night

September National Ovarian Cancer Awareness Month

Cancer News from Tahoe Forest Cancer Center:

September Is National Ovarian Cancer Awareness Month
CancerConsultants.com - News 9/1/2009
As the month of September brings ovarian cancer into focus, it’s time to increase public understanding about the disease, including its prevalence, approaches to screening and prevention, treatment options, and resources that offer updated ovarian cancer information throughout the year.

According to statistics from the American Cancer Society (ACS), ovarian cancer causes more deaths than any other cancer of the female reproductive system. The ACS estimates that in 2009 there will be 21,550 new cases in the United States and an estimated 14,600 deaths related to ovarian cancer.[1] The high death rate associated with ovarian cancer is largely attributed to the fact that the disease is often diagnosed once it has already become advanced, making effective treatment difficult. It’s also important to note, however, that progress is being made in research and in public awareness, as campaigns promote prevention and early detection of ovarian cancer. Staying informed with the latest news on prevention and screening are important steps in reducing your risk of developing ovarian cancer and of detecting disease in its early, most treatable stages. And, should a diagnosis occur, access to current, in-depth treatment information can help you find the best care.

Learning More About Ovarian Cancer
•Find great tips on recognizing early symptoms of ovarian cancer and insight into management of the disease at http://www.cancerconsultants.com/about-cancerconsultants/subscription/.
•To find expanded information on the prevention, screening, and treatment of ovarian cancer, stay updated with the lasted news on the disease, and join an ovarian cancer community, visit the Ovarian Cancer Information Center.
•Sign up to receive Cancer Consultants’ free online ovarian cancer newsletter, which provides disease-specific features, current news, tips, and nutrition and wellness information. Subscribe at http://www.cancerconsultants.com/about-cancerconsultants/subscription/.
•Visit the Cancer Store on Cancerconsultants.com for book titles with topics ranging from personal cancer memoirs to expert nutritional guides about fueling your body to prevent and fight cancer. As well, find back issues of Women magazine, including the winter 2007-2008 issue with a special section devoted to ovarian cancer.
Reference:

[1] American Cancer Society. Cancer Facts and Figures 2009. Available at http://www.cancer.org/docroot/STT/stt_0.asp (Accessed August 27, 2009).


Cancer News
Women Report Symptoms Prior to Diagnosis of Ovarian Cancer
CancerConsultants.com - News 9/2/2009
Women commonly report symptoms to their primary care provider during the year before a diagnosis of ovarian cancer. The results of this study, which was conducted in the UK, were published in the British Medical Journal.

Ovarian cancer has the highest mortality rate of all gynecologic cancers. It is the fifth leading cause of cancer death among U.S. women, with a projected 21,550 new cases and 14,600 deaths in 2009.

One of the reasons that ovarian cancer tends to be so deadly is that it is often detected at a late stage when it is difficult to treat. An important focus of research, therefore, is the development of effective screening tests that will allow for the earlier detection of ovarian cancer. In addition to studies of blood tests and imaging, researchers are exploring whether certain symptoms can help identify women who may benefit from diagnostic testing.

Previously, a consensus statement from the American Cancer Society, the Gynecologic Cancer Foundation, and the Society of Gynecologic Oncologists recommended that women discuss the following symptoms with a physician: bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly, and urinary symptoms (urgency or frequency). Although these symptoms can be caused by conditions other than ovarian cancer, women who experience these symptoms almost daily for more than a few weeks are encouraged to see a doctor, preferably a gynecologist.[1]

To further explore the occurrence of symptoms that may be related to ovarian cancer, researchers in the United Kingdom conducted a study among 212 women with ovarian cancer and 1,060 women without ovarian cancer.[2]

The researchers collected symptom information from the primary care medical records of all study participants. The focus was the year prior to the patient’s diagnosis of ovarian cancer (or a comparable period for the women without ovarian cancer).

Symptoms that were significantly more common in women with ovarian cancer than in women without ovarian cancer were the following:

•Abdominal distention
•Postmenopausal bleeding
•Loss of appetite
•urinary frequency
•Abdominal pain
•Rectal bleeding
• Abdominal bloating
Eighty-five percent of women with ovarian cancer reported at least one of these symptoms in the year before their cancer diagnosis. In contrast, among the women without ovarian cancer, only 15% reported one or more of these symptoms.

The researchers conclude: “Women with ovarian cancer usually have symptoms and report them to primary care, sometimes months before diagnosis.”

Although these symptoms may be caused by conditions other than ovarian cancer, women who are experiencing symptoms are advised to discuss them with their physician.

References:



--------------------------------------------------------------------------------
[1] American Cancer Society. Ovarian cancer has early symptoms. First national consensus on common warning signs. Available at: http://www.cancer.org/docroot/NWS/content/NWS_1_1x_Ovarian_Cancer_Symptoms_The_Silence_Is_Broken.asp (Accessed June 20, 2007).

[2] Hamilton W, Peters TJ, Bankhead C, Sharp D. Risk of ovarian cancer in women with symptoms in primary care: population based case-control study. British Medical Journal. 2009;339:b2998.

bone marrow biopsy and updates

When it comes to bone marrow tests, if your doctor/nurse ever say "this won't hurt, it's just pressure"...they are LYING. The nurses are programed to say "it doesn't hurt, it's just pressure". Why do they lie? By the way, a bone marrow test is done by taking blood and bone marrow tissue from the hip bone. I had one in 2007, it hurt then, and it hurt now. That is partly why I was so anxious, I knew that it would hurt.

Anyway, it is over. It's like this, you are on the table, on your side, bum exposed. He says "this will sting" and he injects lidocaine. Then he injects more lidocaine. Then he says, "you will feel some pressure." I call this the "crank and yank" because you can hear the tool being screwed into your bone and feel it being turned and churned. Then he has to yank and yank until he gets a sample. Sorry for being so graphic, but it is what it is. "Pressure" is from the mini drilling he does to get blood and bone samples. Pressure turns into shooting pain, but goes away as soon as he removes the needle. Then he says, "this piece is too small". He drills again, hello????? Finally after several drills, it was over.

Anyway, my bum hurts and now my left hand is swollen from squeezing the nurse's hand too hard. Did I mention I have arthritis?

If you ever have to do a bone marrow test, just know that it's only temporary pain and you do get through it. You live. Allow yourself to receive an anti-anxiety drug, please. And most of all, it's one of the most important medical tests you can ever receive. If you need it, get it.

I felt like such a baby when I called my sister last night. She said she had a liver biopsy with no pain killers or lidocaine several years ago. I almost cried. I guess the doctors thought she wouldn't feel anything bad. She said she was stunned into pain, and shocked. My sister is so strong. Where was I? I have been a lame sister at times. By the grace of God, she is here for me now.

Next week I get to go to the oncologist every day for blood tests and get to receive two shots to boost my immune system. They also did a simple CBC yesterday, and I still have a low white blood cell count.

I still can't drive. (Bless the American Cancer Society, but they can't take me to any appointments because they need 10 day notice. My doctors aren't giving me 10 day notice.) Thank God for Craig, Mike, Barb and Judy. Hopefully I will be able to drive soon...........hopefully.

I can't get my pain under control until about 1pm every day, but today I walked down the street past 5 houses. Trying to work out the pain in my bum and abdomen. It felt like 2 miles, but it was good exercise. Step by step my strength and endurance are getting better.

On the insurance side, the California Dept of Insurance only handles PPOs. I did manage to mail an appeal to the Department of Managed Care, which handles HMOs. Isn't this fun. I was on hold with Soc Sec for half hour and hung up.

My arthritis is slowly getting worse because I am on limited medications. My rheumatologist and primary care doctor believe I should apply for Soc Sec Dis because of my combined illnesses. Once I have my chemo treatment plan, I will have a better idea of what to put on the application.

I emailed my congressman again and sent two e-mails to the President Obama asking that insurance portability be allowed in all 50 states and that portability laws be enacted immediately. I need to be with my family.

Thank you Craig for taking me to the doctor yesterday. Thank you God for taking care of my family and friends.

Love,
Denise

contradictions

Well, as government goes, government does what it can. I called my congressman's office and they said to call my state assemblyman. My state assemblyman's office said to call my congressman if the Dept of Managed Care help center is not able to "help". So, because insurance portability, or lack thereof, is controlled by both State and Federal statutes, per "them", nobody is really willing to go out on a ledge for me. The gentlemen I spoke with today were all very concerned and felt bad, and I could tell they were sincere. At least there is motion.

I had the pleasure of speaking with Philip today (an old good friend) and he recommended I call the California Dept of Insurance. So that is on my list for tomorrow, before my doctor appointment. It was so nice to talk with him today. It's amazing how we all can make a difference with kindness and care. Thank you Philip for your prayers and I am so happy that your life is full of joy. I have Philip to thank for bringing me closer to God, and for that I am forever grateful. I feel lost without a constant communication with God.

He is there if we want to feel his love. I believe everyone needs to come to their terms with God and it comes from within each of us to open up and listen. We all do this at our own pace. Philip was there to lift me up a bit. Thank you Philip.

As far as my health goes, today was a day of more abdominal pain than usual, so making calls was tiresome. It takes a tremendous amount of energy to look for files, keep notes, log medications, log symptoms, and sort through this maze of potential resources. I really don't want to have to do this, but I need to do it. I need to get this monstrous health insurance debacle cleaned up.

I guess I'm hoping that this pain will ease soon. That's all.

Tomorrow I hope my primary doctor can help me find resources. Then Thursday is the bone marrow biopsy. I know it will hurt, but I'll get through it. I'll beg for lots of lidocaine.

Hugs and kisses and smiles and well wishes to all my friends and family. Thank you God for protecting those I love and for bringing good people into my life.

Denise

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)

hell days

I hope to one day be an inspiration to someone that Ovarian Cancer is survivable. I hope to say that my surgeon was a messenger from God and that chemo works. I want to live.

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.

Denise