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