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