settling into Seattle Cancer Care Alliance

Well, I have to thank Mandy again because every time I go to the clinic for a neupogen shot, I get to be in awe of the SCCA. It is a state of the art facility on the cutting edge of cancer research and treatment. My purpose in relocating my life to Seattle was to be with family, pure and simple. I was not even concerned or aware of the caliber of treatment available to me. All I knew was that I had to be with family. By the grace of God, my sister and her husband did research to find me the best treatment facility and insurance. My mother, bless her heart, is taking care of me at home. I cannot ask for a better situation.

My ability to tolerate the long waits is improving. I am getting excited that maybe I will be healed and that I am here to help someone know that cancer is not a death sentence. We all will pass, and we are not to know how, but at least we can have hope that cancer is not always the immediate killer.

My CA125 is lower, about 33. It is unbelievable to me and I am so relieved that the tumor marker is going down. That being said, it does not mean the tumors are gone. When I spoke with the clinical coordinator the other day, she said they need to monitor the tumor marker over time, so that we can be assured the chemotherapy is working.

As far as chemo goes, I really hate it. It gives me lots of nausea and stomach pain, and it totally wipes me out. For the first three days after treatment, I did nothing but sleep, shower, try to eat, and sleep again. So tomorrow I get a clavicular port put in to save my veins. Then I get more chemo, Taxol and Carbo. I am dreading the side effects. Good news, still have hair!

Today is literally the first day I have felt good enough to blog. It's hard to imagine that someone has not the energy to turn on the computer, but it is true. So for now I will say that I believe I am in excellent medical hands and God is taking care of my family to help and love me. My sister has so much to do, her children, her husband, her business and herself need attention....yet she makes time for me. I am so so so so so so so so so so fortunate. I love my family so much, I cannot tell you enough.

Thank you God. So until next time, as my Aunt Sadie used to say, "see you on the other side of the moon".

Love,
Denise

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