Everything still seems hard

Hi.  Today I'm fighting a silly cold, so I have no energy. 

My good news is that my CA125 is 7.  Hip Hip Hoooray.  I still fight fatigue and abdominal problems, but feel more confident that I have some time to rebuild some assemblance of a life.

My worries right now have moved into the financial and insurance arena.  My income is a little over $600 per month.  It doesn't even cover my basic expenses, so I am walking on a tightrope.

I have not yet heard back from the Dept of Voc Rehab.  I have not applied for SSI, maybe I should.

I just need a good paying part time job to see if I can really handle working again. 

I just don't know if I can work.  My eating is so regimented now because of my abdominal problems and my fatigue is so unpredictable, I can't see an employer tolerating all my special needs.  I still have lots of medical appointments.  Next week I have three, a bone density test, eye appointment and meeting with Livestrong.

I feel like a total loser right now because of the work issue.  I just want to work from home.  I have enough in savings to go another month, then something drastic will need to happen.

I hope I don't look like a baby.  For example. I got this cold right after I went to the hospital to see my rheumatologist.  I have a weak immune system and probably caught the bug just being out in public.

That's my worry.  I really am homebound for the most part, even though I am NED.  I live on a roller coaster.  For example, after I heard my CA125 was 7, for a brief moment I felt on top of the world, ready to embrace each breath with a new level of excitation, living like I've never lived before.

Then I woke up with a sinus problem and have no energy to do anything.  How can I work if my body is still so fragile?  The answers will come.  I am willing to work, don't get me wrong, I just don't know what I can do anymore.

Another OC sister passed away this week.  That makes three in the last month, from my support group.  It is so sad.  Most of the sisters have experienced recurrences, and it scares me.  But I need my group, they understand me.  I love them all.

Be love and God Bless

Doctor, radiology and labs today for fun, CA 125 done

It was one of those clinic days for me today.  I had the opportunity to deal with both RA and ovarian cancer maintenance, spending most of the day at the hospital.

Actually it was great to revisit my rheumatologist, as she just returned from maternity leave.  She spent good quality time with me.  I received new xrays of hands and feet, bone density scan ordered, OT ordered to get a splint for my ulnar deviation.  I wonder how much radiation I will have received in the past 18 months, too much probably.

Had port flushed and labs drawn.  For some reason my oncologist ordered another CA 125.  I just had one a month ago, and it was 10.  I forgot if they were going to draw it once per month or every 3 months.  Chemo brain again.

I painted my finger and toe nails teal.  Everyone loves the color and it is a great conversation starter for ovarian cancer awareness.  It really is.  Plus, everyone has liked the "blue" coloring.  I'm happy that I have taken this step to be an advocate, at least in a subtle way.

I want to do more, but have no resources.  I'm teetering on a few ideas, but have not really settled yet.  I am still walking in a bit of limbo, uncertain of the course of my cancer, decision-making has been a chore.  But it's getting better.

Need to apply for SSI this week, money is running out.  Have not heard from voc rehab yet, hope they tell me soon if they can help me or not. 

This is the point where having a rich husband would come in handy, ha......oh well.

Be Love and God Bless

God Bless Fightgirlandi The Dash

This poem was posted or written by a woman in my online ovarian cancer support  group.  Her online name is "Fightgirlandi".  She was diagnosed with OC in August 2009 and passed away a few days ago.  I am posting her poem to help all of us who are graced with the ability to breathe fresh air today.  We are gifted with life for now and maybe we can find a way to make our lives better for those around us. 

God Bless you Andi.

The Dash

• By fightgirlandi

• Posted January 27, 2010 at 9:41 am •

• Shared with the public

I read of a man who stood to speak,

At the funeral of a friend.

He referred to the dates on her tombstone

From beginning to the end.

He noted that first came the date of her birth

And spoke the following with tears.

But he said what mattered most of all,

Was the dash in between tho---se years.

For the dash represents, all the time

That she spent alive on earth.

And how only those who loved her

Know what that little line is worth.

For it matters not, how much we own;

The cars, the house, the cash,

What matters most is how we live and love

And how we spend our dash.

So think about this long and hard.

Are there things you'd like to change?

For you never know how much time is left,

That can still be rearranged.

If we could just slow down enough,

To consider what is true and real.

And always try to understand,

The way other people feel.

And be less quick to anger,

And show appreciation more,

And love the people in our lives

Like we've never loved before.

If we treat each other with respect,

And more often wear a smile

Remembering that this special dash

Might only last a little while.

So, when your eulogy is being read,

With your life's actions to rehash

Would you be proud of the things they say

And how your spent your dash?

Faces of Ovarian Cancer

I used to be the focus queen

Yesterday I was so proud, I was able to drive to the eye doctor without getting lost!  For me this is major.  I still get nervous driving in new areas and Seattle's downtown is a maze.

The eye doctor said my eyes are healing well and now all I need to do is continue Restasis and an over the counter cream.  My prednisone and methotrexate have helped tremendously, so now the next step is new glasses.

I still get nystagmus periodically and my eyes will blur with prolonged computer use. No biggie though, just super happy to see.

Today was a day to be grateful for sure.  Crisp autumn air, blue skies, sunshine..............wow what a beautiful day.  Had a moment on the phone with my sister, which is always a treat.  Spent some time online doing more Ovarian cancer research.

I found out from a medical presentation sent to me by one of my OC sisters that the best predictor for survival rate in the cases of advanced OC (stage III/IV) is the success of the initial surgery.

I still only have 20% 5 year survival rate, but it's "better" because my surgeon was able to optimally debulk me. 

I feel stuck, like I'm in between two worlds.  I need to take advantage of this "remission" to the best of my ability, but prepare for recurrence.  It's hard, I feel like nobody understands.

Next week I meet with Survivorship counselor from Lance Armstrong foundation, to help me with these issues.  By then I hope to have some word on Voc Rehab too.

I want to go away sometimes, just take a vacation.  But I can't tolerate the travelling yet, not to mention no money.  But I do hope to travel while I can.  I say that not to be trivial, just that I need to make a bucket list.  Everyone needs a bucket list..........................everyone needs to make sure they get to do some things that make them feel pure pleasure and joy.

God did not grace me with a husband or children, so I do feel empty.  I doubt I'll ever marry now, given my health situation.  So I am seeking something to nurture, besides myself.  That's why having an empty job seems to me that it would speed up my death rate.  I'm not independently wealthy, so I can't just "volunteer" like I'd like.  Not sure about social security income being enough AND my insurance rates skyrocketed.

I know this sounds boring to some, but to me, every thing I do takes extra effort.  Sometimes it takes me half the day just to pay a few bills, I get distracted, or unfocused.  I was never like that.  I was the "focus" queen.  I could be counted on to get things done.  Now, I don't know.

I do believe though that when I will be presented with the challenges in the future, I will have more determination. 

I'm still really forgetful, which bothers me.  I hope that goes away.

Be Love and God Bless

work ever?

Today I met with an intake specialist at Voc Rehab.  My hope is that I will qualify for training and assistance with finding a job/new career.  I have a lot of barriers, but also a lot of will.  My biggest goal is to spend my life doing meaningful purposeful activity that helps others and provides me a modest sustainable income.  I want to work from home because I have so many medical issues with my abdomen, nausea, fatigue and arthritis.  I also want a home based career in case I do have a recurrence.

I am doing everything I can to be proactive and a good planner.  If I have a home based career, I can manage my tasks and projects around my medical appointments and health problems.  God forbid, but if cancer returns, I would have freedom to do some things from home while on chemo, if able INSTEAD of possibly losing my job completely due to extensive time off. 

Only employers with 50 or more employees are required to honor Family Medical Leave Act.  I just don't want to work in an office with lots of people playing office politics. I have no desire to "climb the corporate ladder".  I don't even know if I'll be alive in two years.  Nobody knows how long they will live, so why waste your precious life working for someone who dislikes you or hurts you somehow.

Plus, I have a weak immune system, so I don't want to be around a lot of people, I just don't. 

I can't take those kinds of risks.  Negative environments and high stress can aggravate cancer, I don't want any remnants of cancer to be aggravated in my body.  I believe I have every right to find the optimum work situation.  At least I'm going to try my best, that's all I can do.

I don't want to be a government burden, and I don't want to live in "the projects".  Mom and I cannot live together forever, and she needs her life back.  It has been 5 years since I have been able to live in an apartment because of poor finances.

One of my wishes before the Lord takes me is that I can at least have a studio apartment in a safe neighborhood, and feel some sense of dignity.  Am I being selfish?  I need space to re-grow, re-birth, re-ignite my senses.  I want to be a positive influence for my family, not a drag.

I don't know, all I can say is that I am doing the best I can do.

Be Love

Understanding Ovarian Cancer

Update from Oncologist

I met with Dr. Gray today, what a joy.  She shared good news, and I am relieved.  I am still NED and my CA125 is now 10. She said the CT scan showed no new tumors and looked good, so I am relieved.  Recurrence is my biggest fear.

I talked with her about my lingering issues with abdominal pain, fatigue, nystagmus, vomiting etc.  She reinforced that the body can take up to a year to heal from the chemotherapy and surgery.  But overall, I am improving.  I see the Oncologist again in three months.

I need to watch my food intake probably forever, being careful with fiber.  Haven't decided on an allergy test yet, but will just avoid peanuts for now at all costs.

This good news frees my mind and helps me to be more hopeful for the future.  I meet with Dept of Vocational Rehabilitation in a few weeks and need to see if I qualify for any of their services.  I can earn some money in addition to the small disability income I currently receive.  If it is at all possible, my dream would be to have a part time job that is homebased, in advocacy or some form of computer work that has a mild training program.

So off I go to the next step while I continue to rebuild my strength, endurance and digestive health.  Thank you God for blessing me with my mom, sister,brother-in-law, brother, aunts, and uncles who have been so supportive.  Thank you God for giving me friends who have offered laughs, kind words and support from day one.  Thank you God for blessing me with an amazing health team here in Seattle.  God Bless everyone who has touched my life.

Be Love

Update on Breast Health

Today I went in for my mammogram and breast ultrasound.  The nurse practitioner had recommended the ultrasound due to her locating some enlarged dense tissue on my right breast.  Well hallalua and thanks Be to God, no lumps or abnormal tissue was detected today.

Because I am BRCA 1 mutation positive, I need to see the NP in three months for a follow up breast exam, just so she can determine if the area changes ins shape or size.

WHEW!

If I must have a mastectomy, I will have one.  But for now, since the monitoring is going well, it is so so nice not to have to be so worried about breast cancer.  I have enough to worry about with ovarian cancer recurrance rate issues.

So thank you all for your prayers.  Thank you God for watching over me and giving me something to smile about. 

Be Love and God Bless!

Qigong and update

I am really pleased with the Qigong dvd I rented from netflix.  Giam sells this dvd, and I decided that I need to buy it, as an investment in my health.  My internal organs are so screwed up, so touchy, and unpredictable, that I am frozen sometimes unable to leave the house.

Qigong is a series of ancient Chinese postures and movement patterns that help to energize and release your bodies negative energies ( so far as I know).  I have done the exercises a couple of times, and feel more balanced for a bit of time.  It was suggested by one of my OVC sisters to try Qigong, and this seems to be a good fit for me. I am grateful for my OVC sisters.

Had my pelvic CT scan, bloodwork, and breast exam last Thursday.  LONG day.  Reminder, I'm also BRCA1 mutation positive, so I also have 6 month checkups.  Next week I have breast ultrasound and mammogram and also a meeting with my gyno-oncologist.  I've never had anyone give me a breast work-up like that before.  Pulling, poking, stretching, pinching, pushing, rolling...my gosh.  The good news is she found no "lumps" but did find some abnormal dense tissue on the right wall of my right breast, hence the ultrasound.

I am praying for clear pelvic CT and good CA 125/bloodwork.  I will also be praying for a normal mammogram and ultrasound.

I just set up a future appointment with the state Voc Rehab center.  I need to earn more than $600 per month to get my own place.  So I need to find a part time job that pays fairly well and try to focus on what my future can be. 

For now my mom is so gracious and allows me to stay with her, but she needs her space.  She needs a life, so as long as I am not on chemo, I should be striving for a more independent and meaningful life.

I still sleep 12 hours per day though.  I wish I knew why.  Am I still depressed or is that side effects of all my meds????  Not sure, but I must return to a more reasonable sleep-wake pattern.  Maybe I need help.  I don't know, I just have to try harder to get up earlier.

Wish me luck on all my test results.  Love you all.  Be Love and God Bless YOU 

Experimental drug shrinks tumours in women with hereditary breast and ovarian cancers : Cancer Research UK

Experimental drug shrinks tumours in women with hereditary breast and ovarian cancers : Cancer Research UK

battling with peanuts

On Sunday evening I was happy to have an opportunity to house sit and watch Paul, my sister and her family's kitty.  He's a gem, real bright and fun, it's something I enjoy.

After 7pm mass, I went over to their house and was greeted with tremendous enthusiasm because I had let him out earlier to play.  He was ready for warmth and food.  I settled in and fed him dinner anticipating a fairly relaxing night in.

I was hungry for a tiny snack, so I grabbed a small handful (10 pieces) of Puffin cereal to have with my tea.  I was tired by 11pm, and was probably asleep by 11:30.  At midnight I was awakened with terrible tummy pain and found myself hurling into the trash can.  That, along with other unpleasantries lasted until almost 4am. 

I was dumbfounded because I couldn't figure it out.  Well, in the morning I took another look at the cereal box and it had the words "peanut butter" blasted across the front of the box, and I missed it.  I haven't really been paying attention like I should and now realize I must be an avid label reader.

Today is Wednesday, and I am finally having some oatmeal.  I've had terrible headaches, down to 104 lbs, waist now 28.5.  Mom's at the store and offered to get some chicken noodle soup.

The nurse at the SCCA said it can take a full week for your digestive tract to get back to normal after server episodes of vomiting and diahrea, because they stay slightly inflamed for a while.  So I am slowly integrating food and rehydrating. 

This totally blew my little holiday weekend.  I had wanted to stick around to see how Mandy's trip was at Ocean Shores.  Haven't had a chance to talk to her.  Today was the first day back to school for my nieces, so hopefully I'll get to learn how their day went later.

Anyway, Paul was so sweet, and napped with me the whole time, which helped me feel better.

To better days.

Be Love

lunch with mom

Yesterday I had a wonderful time with mom.  I wore my teal T-shirt, and we walked a few blocks to a little restaurant for a late lunch.  It was sunny and fresh outside, a rare treat for Seattle.

It was so nice to sit outside and laugh, enjoy goat cheese pizza and an iced tea.  Events like this are enormous jumps in recovery for me because my abdomen will never be normal again.  The food was good and I had no pain, such a relief.  Such a joy.  I thank God for giving me the opportunity to enjoy the simple pleasure of lunch with mom.

Waist still 29"

God Bless and Be Love

Tomorrow wear Teal

Today I wanted to remind you all that tomorrow is national wear Teal Day in support of Ovarian Cancer Awareness Month.  Do you have anything teal?

I went to the dermatologist today for a skin check up.  Thanks be to God all my freckles and moles are of no concern at this time.  Yay!  I am so relieved that I went because once you have cancer, you tend to be hyper-aware of potential sources of cancer in other areas of your body.  I was instructed on how to monitor my own skin, and contact them if I noticed a problem.  What a relief.

Last night I had nightmares that I was bleeding internally.  Probably all weird because I had watched the movie "The Lovely Bones" with my mom that evening.  It was surreal, creepy, but had a strange sweetness to it.  I makes you face death and confront your views on the here-after.  I'd recommend it.

Since it has been such a beautiful day here in Seattle, I have been so happy today.  I love it when the sun shines.  You can see the harbor much more clearly and people seem more content.

When I was on chemo, I remember feeling literally "afraid" of everyone.  Almost paranoid.  I would take extra measures to lock my car doors when driving, and saw everything as a threat.  I don't feel that gloomy fear anymore, thank God.  I just wish we could be graced with the sun a little longer.

My waist is 29 today.

Be Love.

First day of OVC Awareness Month

Have spent most of the day online responding to women asking for help on the "inspire" blog sponsored by the National Ovarian Cancer Alliance.

I am going to daily/regular measurements my waist just under my rib.  Today I am at 30" (35-30-35) to be exact.  I want to monitor for fluid retention, because I STILL have ongoing abdominal pain.  Because I don't know if the pain is scar tissue, digestive, missing omentum, or tumor, I want to do all I can to track my progress.  Tomorrow I see a dermatologist for skin screening.

Michael Douglas was diagnosed with "throat" cancer, stage IV, just a few weeks ago.  He also suffered through physician incompetence, missing the cancer in it's early stages while most likely to heal.  I feel bad for him and his family, and my prayers go out to them.  This is his first week of chemo and radiation, and seeming well on David Letterman, the general public has no idea how much he will suffer.  Chemo and radiation get more and more toxic with each dose.  I pray God stays with him and gives him the strength to tolerate the treatment regimine, to rid him of his cancer.  God Bless Micheal Douglas and his family.

Be Love

SEPTEMBER IS NATIONAL OVARIAN CANCER AWARENESS MONTH

http://www.ovariancancer.org/

With September being National Ovarian Cancer Awareness Month, I am hoping that you will be taking some time to become familiar with the symptoms and also checking with your gynecologist to make sure you are healthy.  Please ask your primary care physician and gynecologist to explain to you the symptamatology of OVC.  I ask this of you because you need a good doctor.  You need a doctor who knows the symptoms and who will take all your symptoms seriously, God forbid any occur.

No doctor's ego or intimidation is worth the sacrifice of your health!

I read daily posts from ovarian cancer survivors and those in treatment and all are suffering.  It is unbelievable to me how much long term suffering exists in the OVC survivor. We are strong women who didn't need to suffer.

We need more sophisticated screening for EVERY woman so that she remains free of this deadly disease.

Be the one to save yourself and be the one to save your female friends and family.  Spread the word and learn about OVC. 

Be Love,
Denise

neulasta for life

Had a great visit with my hematologist yesterday at the cancer center.  He asked me an odd question "doesn't coming here give you anxiety?".  He was telling me that most patients don't like to return to the cancer center after they have finished their chemo.  I told him that the cancer center feels like home to me, they saved my life.  I can understand why patients would not want to be reminded of their pain.

I want them to know that they helped me, I want them to see me smiling with gratitude.  I want them to know that they matter.

I will have to take neulasta shots for the rest of my life.  Drag.  After two months of weekly lab tests, there is no cyclic neutropenia, no lymphoma (Thank God), and no solution other than neulasta.  Neulasta costs $7K per injection.  Fun.

Anyway, I can't avoid it, because my WBC/neutrophils get so low that my life is threatened because of possible infections.  My doctor said he may try to help me with the cost by doing what he can to negotiate with the powers that be and see if I can get a cost break.  

I am very grateful to him for his efforts.  I had been dealing with low counts for years, with multiple hematologists literally stupified by my situation, and now I have an answer.

My JRA has beaten my immune system to a pulp and my bone marrow no longer wants to produce neutrophils.  Maybe I would be a transplant candidate.......forgot to ask about that. 

Anyway, so I have a lot of bone pain today (side effect of neulasta), but I'm protected for a few weeks.  Yay!  

On a side note, I'm making friends with the local neighborhood cats.  All the neighbors have indoor/outdoor cats.  They are coming around and I get to play with them.  I love that!  Just love it.

Be Love

Cre'me Brulee

Well, per doctors orders, I am eating less fiber.  So instead of a nice soup or salmon with veggies, I had Cre'me Brulee for lunch with peppermint tea.  My mom and I went to a local little lunchhouse called "The Barking Dog".  It's actually within walking distance.  Met a nice older guy named John who chatted with us a bit.  Mom had halibut and salad, with some white wine (gosh I wish I could have alcohol at least once). 

Lunch was grand, and after the lorazepam, queasy pop and extra omeprazole, I think I was OK to eat.  Life is fun.

It was nice to chat with mom about this and that, watching people walk their dogs, talk about things other than our illnesses and worries.  It was a good day.  Thank you God.

Be Love

back to chemo side effects

I was really hoping to blog about my dreams, but I'm dealing with another episode of vomiting.  Last night (Monday) I got very sick AGAIN!  I had accidently eaten a chips ahoy cookie with peanut butter, and a few hours later, goodbye dinner.  I know...gross.  But this is really getting me down.  This is the dialogue of my life..............................................................I'd rather be talking about dancing or the latest movie I saw, or a trip to the beach or whatever.

The SCCA oncology nurse called me this morning (they are so good) and I told her about last Thursday and last night.  Good news is that she said I eat a very healthy diet, good fiber and nutrition.  Bad news is that if this is intermittent bowel blockages, I will need to eat less fiber and more processed foods........I'm confewzed!  Processed foods can increase cancer risk...........I don't want to change my diet.  I will follow her orders for now, just to see if it makes a difference.

So my instructions are to tone down the fiber, drink lots of fluids, and wait for my upcoming CT scan.  She wasn't keen on my problem being a peanut allergy, and I think it is.  But who the hecka knows.

All I do know is that for the rest of my life I may be dealing with abrupt episodes of vomiting, and how will I live any normal kind of life in that condition????

It makes me afraid to leave the house or plan a trip or go on a plane or long drive or crowded event or anything.  I really need to reach out and find out if this is a common problem.

The SCCA nurse said that this blockage problem is a side effect of chemo, and that I will need to meet again with a nutritionist and be instructed on how to cope with this problem long term.  I read that as "there's no cure" and I'm bummed. 

I know I will get better at coping with this.  I have a sweet niece who has migrains (she's 10) and she always has vomiting episodes when she has a migrain.  If she can handle it, I can handle it. 

So my plan today is to see how I feel, and hopefully I will be able to take a walk later in the day.  We will only have two warm Seattle days this week, the rest of the time the temperature will be in the 60's.  Yuck.

So, it's beautiful and I am going to do everything I can to enjoy fresh air, blue sky, the chance to just be here and exist in peace.  I am glad that I don't Have to be anywhere today other than to go get a prescription. 

These episodes wear me out a bit.  I plan to rest most of the day, say some prayers, and count my blessings.

Be Love.

movie with Ewan McGregor

So to make things even stranger, I came home from housesitting and found my netflix movie on the table.  It was the latest one with Ewan McGregor, "Men who stare at goats".  How weird is that?  I had totally forgotten that movie was on the waiting list, and really had no idea what it was about.

Just wanted to mention it.  It's a funny movie, by the way.  They talked about cancer in the movie though...........

Be Love

vivid dreams about Ewan McGregor

Don't ask me why, but I had a very very odd and intense dream last night about Ewan McGregor.  He told me that he has cancer, stage IV.  It was the weirdest thing and I pray to God that it is not true.  I was part of a group of people who were playing a game.  The game was like a play, a musical, but also like a sport.  Sort of like being a dramatist, mime slash musician slash dancer competing to win "something" in a time similar to "waterworld".  We were competing as a pair, and he started crying, held me and said he had cancer.  He started shaking his head side to side in denial and it was awful.  I wanted to comfort him and take his pain away.  This went on and on in my head in loops of variations of the same message, over and over.  Why Ewan McGregor and why cancer?

I got violently ill again Thursday evening, and today I still feel nausea and fatigue, but am grateful the episode is over.  I have been housesitting, taking care of kitty, garden, mail etc.  It's all I can do right now to get ready to go back home. 

Maybe the dream is a result of the extra Lorazapam I had to take for my nausea.

The thing is I have always adored Ewan McGregor.  He's a doll, and such a wonderful actor. 

I have been having vivid dreams all week.  Maybe I'll start putting them in my blog and see what happens.  My family is pushing me to get my life together and "get a job" etc.  Well, I am trying here.

Who is going to hire someone who may or may not be able to show up from day to day.  I pray to God for a work from home purpose.  I pray that it comes, and I will seek that form of income.  I can't afford to live in Seattle on disability.  It won't work..........things will be OK.

In the mean time, my dreams may be a way to sort out my frustrations and worries, so let's see what happens tonight.

Be Love.

Missing an Ovarian Cancer Diagnosis Should Be Criminal

Missing an Ovarian Cancer Diagnosis Should Be Criminal

Trisha Torrey is a patient empowerment advocate. In this article, she quotes me! I am so thrilled to know that there are other women out there who really see the crime in allowing undiagnosed ovarian cancer to persist. Thank you Trisha for your powerful presence. Thank you for listening to me. Denise Archuleta

sleeping in

I slept until 1pm today.  Not sure why, I guess I needed the rest.  I went to bed at 11pm, and fell asleep quite readily after reading some of the Bible.  I have gotten behind on my reading, bogged down a bit with worries.  I'm not supposed to worry as my life is truly in God's hands.

I received a letter from Dr. G saying she is comfortable with returning to work in October, pending progress with arthritis.  That made me feel a little more at ease, as I'm really not ready, but getting there.

Every day I work on building up my strength and endurance, so that I can actually do meaningful work.  I still don't know though what it will be.  I didn't call the "Ticket to Work" organization yet, I need to do that next week.  I am procrastinating.  I feel totally stuck.  I think it's because I really just want to be involved in advocacy or have my own little business.   Lord help me figure this out.

Lord please also help my mom.  She has nausea all the time.  Our summers here in Seattle are short.  She is missing the moment.  I love her so.  I love my family. 

Tomorrow I get to enjoy the Blue Angels show with Mandy, Patrick, Laria and Addie.  Hopefully mom will be able to go.  It will be so so nice to laugh and smile, in spite of the rain.

Be Love,
Denise

My second Birthday

On this date at this time last year I was lying in a hospital room after major surgery to remove cancer.  I had a total abdominal hysterectomy, appendectomy, removal of my omentum and lymphnodes, as well as some smaller tumors along the peritoneal cavity.  I was "optimally debulked" according to those in the gyn-oc community.  According to my mother and aunt, my surgeon was beaming with joy at the results.  He said it couldn't have been any better.  The next phase, chemotherapy in 4-6 weeks.

I had to move to Seattle for chemo, which I completed the end of February.  My next CT scan is in about 3 weeks, along with another CA125 blood test.  Now that there is no evidence of the cancer, I am on lifelong survielance, because the recurrance rate is about 70% for my type of cancer, Stage IIIC.

Today I have the luxury of being with my family, to be exact I am sitting in my sister and husband's beautiful home.  I also got to enjoy a nice movie with mom earlier today.  As far as "second" birthdays go, its been pretty good.

A year ago I couldn't even roll side to side, I had staples from my breastbone to all the way down "there".   For several weeks I needed help in and out of bed, my aunt and sister had to stay with me because I couldn't take care of myself.  I was in so much pain, so much pain.  The narcotics made me constipated and it just gets worse from there.  Recovering from the surgery was a real challenge, but I did it.

Once chemo started, I had a whole new set of problems.  Unexpected visits to the emergency room, nausea beyond belief, severe abdominal pain still.................total loss of concentration and unbelievable fatigue.  It was hard just to watch TV or check my email sometimes.  Once chemo ended, the residual effects lingered on and on.

To this day I get nauseous every day, but just a little.  ( I have to take methotrexate for rheumatoid arthritis, and nausea can be a side effect).

Now I can walk around the lake, which is a big WOW for me.  It's not a power walk or anything, but it's a walk.  I need to get stronger.  Strange though, because I have no omentum, everything jiggles, and it "hurts" if I bounce too much, but I try.  That will never go away, so I have to deal with it.

I can concentrate now, and don't have that severe abdominal pain any more.  What I do have now though is an extreme fear of getting super nauseous and winding up in the ER.  I had severe vomiting episodes after chemo ended, and the cause was never determined.  I am very careful to take anti-emetics before I exercise.

I am still so lost though, and I need to resume some sort of work someday.  I cannot imagine a full time job but I can imagine a part time job. 

I apologize that this post has been more about my body than anything, but unfortunately that is where my focus has been.  I went to church last Saturday for the first time since May (when I got severely nauseous).  I met with the priest and it felt so good to confess my anger.  I need to rebuild my spiritual self and find my place in this world.  My place to provide good will, and I'm working on that.

My family and friends are the most important people in my life.  They got me through this episode and dark period in time.  They are supportive, but I know they don't want me lying around the house on disability doing "nothing" with my life.  Neither do I.

Having a chronic disability (arthritis) and cancer history make job hunting a real challenge.  To be honest, I love life and treat each day as a gift but I'd be lying if I said that the 70% recurrence rate didn't worry me.  It does, it clouds me. 

I want to get retrained with the "ticket to work" program, but for what.  So I live my life check up to check up.  It would be so MUCH easier if I already had a job to return to.  The cancer center is offering a "cancer and careers" workshop in August, which I will attend.  Truthfully, I wish I had my own little business.  Just a little something I did at my own pace that made me just enough to pay bills. 

As my physical self gets stronger and more able, my mental state improves because my confidence improves.  Still need to get to Gilda's Club. 

I am a thousand percent better today than I was this time last year.  I thank God for surrounding me with a very very very loving family that reached out to support me and help me when I was unable to help myself.  I thank Him for sending me good friends who really cared and took care of me during dark days.  My mother, aunt and uncle, sister and her husband, and brother really really really bent over over backwards to get me the resources I needed.  I would not have survived without them.  I also thank God for my surgeon and oncologist, who saved my life, literally.  I am blessed.

So tomorrow is a new day, another chance to make a difference, be a friend, and be Love.

Denise 

A prayer for those with cancer

Oh Saint Peregrine, you have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you (names of those for whom you are praying, including yourself).  Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy.  Amen.

Sleeping

I still sleep 11 to 12 hours per day, no matter what time I go to bed.  No matter

what I do the day before.  I wonder if my medications cause me to be so

sleepy or if I'm still depressed.

This is a concern because eventually I need to really live a life that has some sense of normalcy.  Maybe "normal" isn't what I need to strive for.  In the world of my imagination I see myself running a non-profit organization that helps women blindsided by ovarian cancer.  In another world I do good deeds for the homeless. 

In another world, I make pottery and sell it on etsy, donating a portion to

ovarian cancer research.

I wonder if I will ever live alone again or have my own apartment.  I guess that is not really important. I really enjoy being with mom, even on our "bad" days. 

 I sometimes think she tires of me. 

Whatever I do in the future, I can't be sleeping 12 hours per day. 

I am still very anxious about being in large crowds because of my neutropenia.  Yesterday my sister's girls participated in a karate demonstration at a Seattle event called "Bite of Seattle".  I really wanted to go, but my WBC is low and I should be getting a shot for that this coming week.  Plus, I have this huge fear of getting severe nausea and vomiting still. 

I hope I'm not turning into a basket case.

I did speak with a kind woman from Cancer Lifeline (local support organization) last week.  She invited me into the center to take a tour.  I'm moving at a snail's pace on reaching out for support, but it feels right to me.  I must be driving my sister nuts, she is really pro-active and doesn't waste time. 

 I love her so much.

Anyway, I need to find a way to get up each day by 8am.  That is my short term goal for this week.  Let's see if by the end of the week I can awaken at a normal hour.  

Be Love,

Denise 

forgiveness

I have been relishing in the warm weather, joyfully awaiting each day knowing that I can actually walk outside and be comfortable.  Seattle's summer is short.  We have a small window of opportunity to do what we want in order to feel "satisfied" before the tiring rains begin again.  There is little time to worry or wonder about regrets or postpone plans.

That is sort of what I feel in terms of my well being.  I don't want to live my days with regrets, unanswered calls, forgotten business, unresolved matters of the heart and will, issues with the past etc.  Yet each day I am faced with an opportunity to do something to resolve some thing.

I opened my mouth today and accidently revealed something that was not supposed to be said to another.  The mistake was truly a mistake, I was not aware that this condition existed and now I feel bad.  The problem is that this one incident is part of a larger festering unresolved conflict that involves a group of people I love dearly, and we are all involved.  It's a matter of long standing problems that have caused immeasurable pain for others, and there seems to be no resolution.  It is simply a painful situation, and my heart breaks because I want to wave a magic wand to make it go away.  I want to turn back the clock and do things differently.  I want to fix it. I can't.  It hurts.

So I apologized for making my mistake and I apologize again. 

So how and why do we continue to live our days knowing that we have unresolved conflicts, pain and anger, nestled in each fiber of our being?  Why can't we just fix our lives?  Why can't we instantly forgive and forget, let people be who they are and have no expectations.  I don't know but if we lived our lives by only loving one another we would all be happier. 

I will continue to make right my wrongs as best I can until I die.  I have had a brush with death, just enough to appreciate forgiveness and love.  I have to work hard each day to be what I preach, so to speak.I am far from the best example. I will pray for all I love to live a life of love.

Be Love

My hair

A glimpse of sun

A beautiful day was today

Nothing to wash my smiles away

No thoughts about cancer or it's return

Just beams of sunrays around every turn

God hear my prayers that my loved ones are healthy

Fine spirit and body, humbled not wealthy

Let them feel love, radiance and glory

Let them have peace, content and no worry

Be Love

Denise

Birthdays

Yesterday was my 46th birthday.  It was a beautiful day.  Mom and I went over to Patrick and Mandy's house in the afternoon.  We played with Laria and Addie.  We created our "summer fun" calendar for the kids so that they won't get bored.  I had a chance to talk with Aunt Debbie.  I responded to many wonderful well wishes on facebook.  We had a really nice greek dinner and a taste of sorbet and carrot cake ice cream.  I got to watch a little bit of a movie with the girls.  Overall, it was truly a special day.

The only thing I wanted was to treasure time with people I love.  I missed seeing my brother.

I missed my friends from California.

I wasn't sure I would be here for this birthday.  This time last year I was in horrific pain and eveything I knew to be true was turned upside down.  Now everything is new, fresh, scary, uncertain, but hopeful and filled with opportunity.  I get waves of depression and get stuck, but know everything will be OK with God's help.  I'm in the right place.  I love you to all my family and friends. 

Thank you for a beautiful day.

Be Love

frozen

I feel stuck today

I'm standing at the top of a tall narrow pillar, blindfolded

Frozen

Fearful of any movement in any direction

Why, I do not know

Be Love 

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.