wants

I could be anywhere doing anything
I want to be here

I don't want to be in a crowd of people I don't know
I want to recognize the smiling faces around me

I don't want to be alone yet I want a private space
I don't think I can rely wholy on myself as of yet
But I want to be free and independent

I wish no more pain or sickness to be inflicted upon my body
I just want grace and peace

Will I be a blessed recipient of peace, grace and strength?
Can it be so?

Update from oncology appointment

I saw Dr. Gray today.  It was so nice to see her, she was very encouraging.  My CA125 is 8, which is really good.  Her exam revealed no concerns.  I told her I was still foggy and got tired easy, but was doing better.  We spoke again about possible recurrence and reviewed the symptoms.  Again, with ovarian cancer, it's all about subtle changes. 

She was so kind in trying to speak with me realistically about recurrence, saying that for a group of women, there is no recurrence.  There is no way to predict for me if I will fall in or out of that group.  So I need to continue to take life day by day, and use each 3 month check-up as a mini-milestone of progress.

She encouraged me to try to be as active as possible and if it felt right, join a support group like Gilda's Club.  She is right.  I just haven't had the energy to join a group yet, but it's getting time.  Especially since this first year or so after chemo is so uncertain.

When I came home I was just so extremely exhausted.  I think emotionally it drains me to confront my situation.  I don't dwell on it, but it lingers every day, like stagnant air, suffocating at times.

On other days I feel so happy and excited, I have a second chance.  So I exist rolling up and down these hilly trails each day striving to make a difference.

I pray for God to continue to lead me in the right direction, making my eyes and ears sensitive to His calls so that I may serve. 

I felt better after my nap today.  Sleep always helps me. 

On to tomorrow and a fresh start once again.  I have a wonderful oncologist and am so grateful for her.

Be Love

disconnected still

I feel most alive while I'm sleeping

In my dreams I can live freely

No pain, no worry, no weeping

So disconnected still

Removed from the everyday treadmill

Yet immersed in a constant threat

How long will God grant me breath and will

Be Love,

Denise

Johanna's Law

Johanna's Law was introduced to the Senate on June 15th 2010 by Senators Spector, Stabenow and Menendez.  This law would allow the CDC and Secretary of Health and Human Services to increase resources allocated to raise awareness and education of gynecological cancers, such as Ovarian Cancer.

This is great news!  I've never seen a pamplet or handout about Ovarian Cancer in any doctor's office.  You never see public service announcements or commercials about the horrid disease.  Health education classes certainly don't talk about it.  I never had a gynecologist talk to me about the symptoms of Ovarian Cancer (except to say I was too young to have it).

Cancer is so scary, especially a gynecological cancer.  We as females are so dependent on our health care providers to be the eyes and ears of diagnosis.  Especially since anyone would want to minimize symptoms as a natural defense, we need our doctors to be more aggressive at looking for the early signs of ovarian cancer.  We as patients cannot do it alone.

Be love,
Denise

Death

Yesterday, while at SCCA, I had the pleasure to speak with a spiritual advisor.  We spoke about coping with cancer, living and of course, death.  We talked about chemo brain.  It was a good conversation.

Last night a young 18 year old male was killed by a drunk driver on I-5, yet I am here.  AGAIN, we all have a purpose.  I pray for his family.  Is it random by chance?

Does God see the world through our eyes or His?  I just wonder sometimes. 

I am afraid to die, but am also doing everything I can to find peace with the idea.  I am reading the Bible, hoping to finish it soon.  God comforts me and sometimes I want to be wrapped in his arms.  I want for everyone to feel that same sense of comfort. Is it like an eternal state of sleep?  In the mean time, while here on earth, I want to be happy and be happiness for others.  I don't want to worry about small problems.  I want to be love.

I told the advisor, I'll call her "M", that being on chemo feels like you're living in a Johnny Depp movie all the time.  Everything is warped.  I was so afraid of everything, even a knock at the door.  I couldn't follow conversations, felt like an invisible magnetic force was keeping me away from everything and everyone.  Sort of like floating, but not in a good way.  Be patient if you are helping someone on chemo, they aren't all the way there, not fully present.  Yet they ache with every cell in their body and spirit to be present, to participate, to live!

To my family, I promise not to leave a mess when I go and not to burden you with unfinished business.  Between now and then, I promise to be as involved, motivated and loving as I can.  I want to enjoy my life with you, I want to live to the fullest. 

Be Love, Denise

OCRF

The Ovarian Cancer Research Fund is a great place to look for the latest on OC research.  Please take a look and support this cause.

Medical News: ASCO: Debulking Predicts Survival in Recurrent Ovarian Cancer - in Meeting Coverage, ASCO from MedPage Today

Medical News: ASCO: Debulking Predicts Survival in Recurrent Ovarian Cancer - in Meeting Coverage, ASCO from MedPage Today

National Cancer Survivor Day

http://www.ncsdf.org/

Today is a day of glory and a day to smile
I have a life that lingers on a little while
I keep on dreaming of what will be
My life to have meaning for someone other than me

Thank you God for this gift of life.  Thank you God for my family and friends.  Thank you God for my doctors and nurses.  Thank you God for all that you have given me.  As I breathe this sweet air today, I feel so fortunate and blessed.  I love you.

Be Love,
Denise

OCRF

OCRF

Please follow the link to support Ovarian Cancer Research. We are a long way from a cure, still working on detection. Every bit helps.

Be Love,
Denise

OVARIAN CANCER SYMPTOM CHECKER

Good morning. 

I am reading up on critical information from the Ovarian Cancer National Alliance.  This link will bring up a symptom checker and diary, for OC detection.  They also have a program that works with survivors to facilitate education and awareness of Ovarian Cancer for professionals in the healthcare arena. I may want to be a facilitator in the future. 

I was astounded at how ignorant my healthcare providers were in the subject of OC.  Women need to know what Ovarian Cancer is and they need to know the symptoms.  But knowing the symptoms does no good if your doctor dismisses them to IBS or some other unrelated disorder.

http://www.ovariancancer.org/resources/diary



Be love,
Denise 

Our body our temple

Today my rheumatologist called to say that the million viles of bloodwork taken at the ER all came back normal?????????????????  So this begs the question, why am I getting sick?

Anyway, I start methotrexate tomorrow.  I am nervous and feel anxious about the side effects.  I prevailed after 6 months of harsh chemotherapy and find myself in the face of another chemo drug for RA.  I am overwhelmed and need to find a way to cope.

I must rely on faith that God is giving me what I need to deal with my body.  I have to be more positive.  Maybe I will be able to handle the side effects OK.  I just don't want to be "sickly" again.  That is the worst feeling in the world.  I could write a novel on "chemo brain" alone.

If I have another vomiting episode I will be referred to a GI physician and probably have an endoscopy/colonoscopy.  Great.  Another discipline, but yet again, it is a blessing.

I have the greatest doctors in the world, finally.  So if they say I need another specialist than it must be true.

I feel like my body is a pendulum swinging in the throws of a hurricane, a heavy ball on a long line that goes high in the sky.  Cancer took me to the heights of my tolerance and now I am literally flying up to the heights to challenge my next phase of illness.  Out of control and filled with fear, I am riding along praying each day to get by.

God gives us these beautiful bodies that we should embrace and adore.  I do everything I can to nurture my body in spite of the illnesses and medication side effects.  We all have this suffering, our pendulums, our cries and our joys.  It boggles me still though that I see some people actively destroy their beautiful bodies with drugs, alcohol, abusive practices, etc and they seem OK.  Why is that?

Maybe genetically I was born to be weak and am actually strong.  Maybe. 

Anyway, since we don't know the answers all we can do is still try to take care of our bodies as best as possible, manage our stress and be compassionate and giving to others.  Do not hold in your angers, be forgiving.  Love your neighbors as you love yourself, and everything will come full circle.

Be love.

Emergency room AGAIN

On Friday I had to go to the emergency room again!  What is going on with me???????????????  I wonder if I am under a tremendous amount of stress or am I developing a new problem? 

I started Friday with an appointment to see the cornea specialist.  I had to take a shuttle from University of Washington to downtown Seattle, it was raining.  Well, the specialist said my eyes were a little better and that the ulcers in my eyes were smaller.  He said that the PUK was a definite result of RA and that we needed a better medication for RA.  He started to tell me that I may need an infusion of more chemo drugs ( I can't remember the name) and methotrexate ( another chemo drug).  I feel like I am reeling, but OK.  I don't want to lose my eyesight and need my arthritis to be under control.

So I take the shuttle back to U of W for my RA appointment at 3:30, and it's raining and cold.  But, I felt fine, just fine.  I arrived just in time to check in and got to rest for a few minutes while waiting for the doctor.  I got to enjoy watching a new mom play with her baby, which was relaxing.  Had time to think about all that I am grateful for.  I really did make a valid effort to lower my stress and be "positive'.

My rheumatologist said that she was mildly concerned about me having vasculitis, was worried about  the PUK, and that the only measured successful treatments for PUK have been with methotrexate.  I told her that I did not tolerate methotrexate in the past, that it made me very nauseous and "toxic".  I told her I'd give it a try.  I asked her to go over the side effects with me (hair loss, nausea, weakness, liver damage).  GREAT, just what I need.  The last thing I want is more chemo when I had a complete response to chemo for Ovarian Cancer.  I am so so bummed.

She gave me three lab slips, said I needed a chest X-ray, needed tested for HIV and will need prophylactic treatments to prevent a specific type of pneumonia as well.  Grand.  On my way out I told her I felt a little nauseous.  Within 15 minutes I was violently ill with vomiting, diarrhea and severe abdominal pain.  The exact same thing I had last Friday and two other times before.

I eventually got admitted to the Emergency Room.  They took a gazillion viles of blood, did two chest and one abdominal x-ray, and pushed fluids.  They gave me Zofran and a few other drugs via the IV, but not until after the X-rays.  I lost a lot of fluids and was so so so so so so sick.  I was shaking like a leaf with chills from being dehydrated.  My lovely sister came and stayed with me until I was discharged around 2am.

During that time, my blood pressure kept dropping and the ER doc got nervous.  The gynecology oncology doctor "gynoc" on-call came to visit me in order to evaluate if I should be admitted.  The ER doc wanted me admitted but said it was up to the "gynoc". The "gynoc" was very thorough in his assessment.  He asked me everything about my Ovarian Cancer and Rheumatoid Arthritis history.  Unfortunately he could not justify admission, so he ordered some anti-nausea suppositories in case this episode happens again, and said we need to keep tracking this situation.  He said that he closely examined the X-rays and found no blockages or bleeds, nothing requiring surgery. 

So today I sit here nervous about having another episode, and wonder if I am too stressed to handle my current condition.  I wonder if I am unknowingly developing an aversion to certain foods.  I hate not knowing what is causing the vomiting.  I'm afraid to eat and just pray it doesn't happen again.

Next week I have two infusions to enhance my iron levels.  I look forward to that.  My sister and I agreed that I should not have multiple MD appointments on the same day, especially if they are at multiple locations.  I just can't handle all the activity. I love my sister so much for coming to the ER, so sweeeeeeeet.  I have such a supportive family.

I hope tomorrow is a better day.

Searching for some kind of balance

Good morning.  My sister and her husband returned last night from a glorious vacation on La Isla Mueheres.  The islands are located off the beautiful coast of Cancun Mexico.  They returned home with bright smiles, relaxed postures, beaming energy and tans.  Well, what a blessing for them.  They deserved it.  They went with a group of friends to celebrate one's 50th birthday and also personally celebrating 20 years of wedding bliss.

For me, this past week was another health nightmare, and I'm really tired of them.  I think I had noted previously having a severe RA flare.  Well my RAdoc put me on 30 mg of prednisone per day, scheduled to taper down in dosage over the next few weeks.  Because my eyes were also severely inflamed, red, dry, painful etc, I was also referred to an opthamologist.

Last Wed I saw an opthamologist who said she was concerned about my cornea.  I should have anticipated that they would dilate my eyes, but didn't, so I wasn't prepared for THAT!  Anyway, I was prescribed antibiotic eyedrops and referred to a cornea specialist. 

Two days later (FRIDAY) I was seen by a cornea specialist who said I have PUK (peripheral ulcerative keratitis).  WHAT?  He scared the hell out of me because he said my corneas could rupture if I don't get my arthritis under control.

Generally, your cornea is connected to the eye by collagen.  My RA is attacking my collagen and that includes the collagen around my cornea.  So in his valiant attempt to minimize the risk, he also prescribed an antibiotic for my eyes, because he saw a mild infection as well.

The cornea specialist prescribed Doxycycline and an antibiotic eye ointment. 

On Friday, in order to see the specialist downtown, I needed to drive to the SCCA, and take a cab to the eye clinic.  So by the time it was all done, I was gone from noon to 6:30 pm for one medical appointment.  What a day.

I was instructed to take Doxycycline with food.  I had soup, bread, one dose of Dox at 7pm.  By 7:45pm,  I was violently ill, throwing up, diahrea until 1am.  It was absolutely the most miserable condition.  I think I ruptured something in my nose from all the pressure.  I was so sick.

My mom tried to get ahold of all kinds of doctors, nobody available, and when she finally did get ahold of someone, he was rude.

I wound up in the ER on Saturday because of bloody stools.  I was diagnosed with a brief GI bleed, idiosyncratic gastritis and given fluids, pain meds and pepcid via IV.  The ER staff were nice and calming, and sent me home after four hours.  I will never take Doxycycline again, ever!!!!!!!!!!!!!!!

The past few days have consisted of trying to drink, eat litte amounts of food, and play administrator for my doctors.  I say administrator because the eye clinics and ER are not part of my main medical system at University of Washington. So I have to be the one to get records to them from outside doctors, sigh.

I am feeling better, but this is not over.  I still need to get my RA and eye condition resolved, and to be honest, really don't want to go on a bazillion appointments this week.  When I feel like this I have to remember to be gracious and thankful, as someone like me has no insurance and has no appointments.

I just am trying to say that it is frustrating, I am surviving deadly Ovarian Cancer, and my body is still falling apart.  I have not had time or ability to celebrate.  I want simplicity, no pain, to be able to exercise and have a little fun.  When will that happen, ever?  I just want to start enjoying life a little bit, that's all.

The value of our health

Today I'm starting high doses of prednisone to thwart a severe arthritic flare. 30mg per day for a week, then go down from there.  I guess I can't worry about side effects, I'm here on earth, and that's enough for now.

I have been in so much pain, and I wonder how it is that I fight off cancer and now have to deal with more arthritis.  A part of me was hoping my RA would magically disappear when I was receiving chemo.  No such luck.

It is just so amazing to me that those of us with health struggles get through our days.  What gives us the strength to continue?  All I want for my mom with diabetes is for her to be able to run in the sun, play on the beach, laugh, and enjoy a wonderful meal.  My sister has food allergies, so every meal is met with careful planning, why?  Why is my aunt burdened with RA?  Why my uncle with diabetes?  Why another uncle with cancer? 

I believe it is not for us to ask "why" as God has a plan.  Yesterday as I was coming back from the cancer center with my mega prescription of prednisone, I was finding I needed again to look for the lining, that golden beam of light that assures me that no matter what we are given, we will prevail in the end.  All we need to do is have faith.

So that's what I do, I pray.  I have faith that God places all of us together in a certain way to support each other, to inspire each other, to carry each other, to love one another.

So all I can do is give my love when I am in pain.  I give my prayers, as prayers do not require my hands, but instead my heart and soul.

Anger and pain

This morning every joint in my body hurts.  It hurt to slice a banana.  I could barely get out of bed.  My hands and ankles are swollen, my neck hurts, my knees hurt, my feet hurt, my right hip hurts. 

I wonder about anger and it's relationship to disease.  I got so angry yesterday.  Plus, I spent more time than usual on the computer trying to find photos for facebook, which may be why my shoulders and shoulder blades and hands hurt.  I have no idea.  All I do know is that stress is bad for arthritis and it's very bad for cancer.

I am really flaring and everything hurts.  I called the rheumatology clinic to see if they can see me earlier than October (geez).  A nurse is scheduled to call me back, I'll hope for the best.

I can't deal with this kind of pain all over, I just can't.  I don't want to spend the rest of my days in so much pain that I can't wring out a wash cloth to wash my face.  I want to get outside, walk, do yoga, get stronger. 

I want my cancer recovery to be full of excitement and happiness, not arthritic pain.  I hope we can tame this soon.  I just have to be hopeful.

I also need to get back to church every week.  I haven't been able to go regularly.  I miss God's spiritual nurturing.  I have been afraid of getting sick in church, so I haven't gone.  Going to church helps me have more patience, helps me to tame anger.

My body cannot afford for me to have angry emotions.  I need happy emotions.  I need those endorphins.

Well, that's all for today.  Surgery tomorrow.  Should go well.  Thanks for reading.

I just need to vent

Wish this post was a happy-go-lucky note.  Before I vent about my arguement with the physical therapist, please allow me to paint a picture of my current status.

1.  My arthritis is flaring.  It takes at least 3 to 4 hours before I can really do anything.  My hands are swollen, hip hurts, wrists hurt, neck hurts.  All I have to do is a little extra activity and whammo.  My next Rheumy appt isn't until October, I'm on the waiting list, but I need to do something.  Taking 5mg of Prednisone and Advil every day.  I'm not on my miracle drug, Enbrel, anymore.  This worries me about my future and also is very frustrating because I need to increase my activity to heal from Cancer.  I need to exercise more to prevent Breast Cancer.  AND I don't want Ovarian cancer to return, so I need to be slim and healthy, as much as possible.

2.  I can't train to go climb a mountain.  I want to really celebrate the recovery from OC and go do something extreme that says " I won!"  My arthritis says I am going to suffer if I enjoy gardening, that's what.  My digestive system is still a mess so I don't want to celebrate by eating, because eating is not fun right now.  (I can really sympathize with mom who is a diabetic)  Whine whine whine, I just need to deal with it I guess, I just want to be stronger and I will need extra time to get back to a good state, if I ever do.

3.  I do get to have iron infusion treatments twice per week for three weeks in June.  That is good.  Maybe removing my anemia will help me cope better and give me more energy to get stronger.  My hematologist said I have Thallasemia, another genetic illness.  When does it end.  He also thinks my neutrapenia is cyclic, so I'll need to do weekly lab draws after the iron therapy so he can track my situation.  That will probably start the end of June and I have no idea how long that will take. 

4.  I will have a mild surgery this Friday to have an abdominal cathetar removed.  Because my immune system was so so low, I was lucky to get a neulasta shot the other day.  Thank God.  That should last for two weeks or so.

5. NOW... I have a huge headache because the Physical Therapist and I had an arguement today that came out of nowhere.  I saw them on April 1st.  They did some myofacial release therapy and gave me some mild exercise instructions.  It lasted about an hour and they said they would get ahold of me so that I could come back in a week or two, depending on how I feel.  I was told that I had 5 visits approved by my insurance.  That's it. 

They finally called me last week to schedule an appointment ( a month later).  I kindly requested she call me on the 10th because I was waiting on my hematology schedule, then I would be better able to schedule the next physical therapy. The scheduler was totally OK with that.

So today the PT scheduler called me to schedule the next appointment. (45 days since I saw them). Because my schedule is now packed with surgery Friday, iron infusions twice a week etc etc, I wanted to wait until June.  I'm overwhelmed with doing too much "treatment" on one day, that's all.

Out of nowhere, the scheduler said she'd need to then discharge me because that was more than 4 weeks between treatments.  I said, "it's ALREADY BEEN more than 4 weeks"...blah blah "that doesn't make sense". I got stressed and I begged for an appointment in two weeks.  The conversation was edgy because I don't want to lose my PT visits over something like the scheduler not calling me in a timely manner. I had no idea that the orders were for me to be seen weekly for 5 weeks.  If I would have known that, then I would have taken initiative and called them, and would have asked them why they didn't call me back after my first visit.

The Physical Therapist called later and said "Sounds like you don't need PT anymore, you must be doing well".  I'm like WHAT??????? I said that I still needed PT, was having abdominal pain still and didn't understand why they wanted to discharge me. I said to her also that it was already over a month before they called me for my second appointment.

She told me I need to be "polite" during our conversation.  She was totally condescending, wanting me to be the "bad guy".

So we went round and round about that PT never called me to reschedule and they said I should have called them......whatever.  My phone kept dying, so she probably thought I hung up on her (to make matters worse).  How did this happen?  I am the patient.  I am not privy to patient scheduling policies and procedures and I don't know the exact medical orders.  Plus, they are contradicting themselves.

Personally, I think they don't want to see me because I got frustrated with the scheduler and have been now labeled as troubling or something.  I think they messed up the doctor's orders and got me entangled in an argument so that they can claim I am cantankerous and uncooperative, so they then can justify discharging me.  I hate this kind of thing.  I hate being labelled this way when I didn't even do anything.  They forgot about me, period.

So the PT said she was discharging me and told me to request a new PT order when I see my Oncologist at the end of June.  WHAT?????

At the end of the conversation I said to her that I do not want to be made out to be the bad guy, I did nothing "wrong".  I had to re-explain that I am worried about OC returning, getting breast cancer, and that I have all these appointments coming up for hematology and that I am on antidepressants.  I AM DOING THE BEST I CAN!  I forgot to tell her about the arthritis.

So I had to leave a message with my oncology nurses that PT has prematurely discharged me and gave them a summary of the situation.

AGAIN, what ...how...why?  And why am I always the bad guy here? 

The worse part is that I bet my insurance won't approve it again, because I went several weeks without therapy.  The PT just screwed me over.

Just needed to vent.