Monday, September 13, 2010

Can I use the 'R' word?

Well. I had my oncology appointment this morning. To sum things up, my oncologist was smiling and giving me a non-physical pat on the back. He was smiling ear to ear. He thinks my cancer is 'remissing' ? I am so not using the word 'remission' for fear of an up'risal' by those criminal cells that have taken up residence in my beautiful temple. He actually told me that he is surprised at my progress *sniff sniff bawl*!

I have turned the corner through God's will, my determination, ALL of my family and ALL of friends' and coworkers' support. Sorry [bleep] disability folks - you get no credit. So now I continue praying and giving back as I have been trying to do in the last few months. Amazing how life gives us lemons and we forget that all we have to do is to make lemonade. I did not know that I was going to be writing or saying these words since I was diagnosed with a recurrence of Stage IV Inflammatory Breast Cancer with Liver metastasis in July of 2008.

I lost my younger sister to the disease less than a year ago from that time [November 2008] and another sister was battling colon cancer. I thought all was lost for me but I did not give up. My stubborn 'streak' reared its beautiful head and my continued Faith in God gave me the strength to overcome any obstacle that dared to cross my path. Once I knew my prognosis, I called my American family together and we made a plan. The rest is history. There may have been some minor changes in that plan [smile] but I kept on standing and continued to survive in the best way possible.

A friend of my mine said to me the other day: [paraphrasing] - 'cancer is afraid of you Vilma' and not the other way around. I chuckled because she was so close to the truth. I was still trying to control my doctor's treatment methods while meeting with him this morning and overstayed my welcome in his office. I had his staff cracking up. You see - I never go in for a visit without researching and reading new treatments to this deadly disease. I always have lots of questions and make him scratch his head. I remember the first time that I met with him, he asked to have family members accompany me........ Well, that only happened for about three visits cause I basically told my dear brother Michael and loving daughter Joanne to take a hike! Lol!

Ok. This is enough - I am crying now out of happiness. Life CANNOT get any worse. Trust me. My doc was trying to tell me that the cells are still in my body and recur at any time. Guess what doc: I am not ready for a recurrence and besides God cannot take this busybody/overbearing person in heaven as yet!

Friday, August 27, 2010

Okay to be sad

I received news this morning that my long time ailing aunt died this morning. Yes, she had cancer - in the bone. Suffered quite a bit and this saddened me. We knew her time was near but I cried this morning while praying for her in church and I know crying is okay.

I visited her twice in the last year since she lives overseas and in the countryside. My family usually takes a day off to go to that side of the island. I think about her husband who recently started losing his vision and depended on her quite a bit but God will see him through.

I remember my aunt of years ago - very beautiful woman whose grey eyes lit up when she smiled. My cousin and I shared some wonderful stories of her only last night - I guess we were preparing for this. She still had that beautiful smile and pretty eyes when I saw her last earlier this year. She was still very active, tending to her very large backyard of fruits and vegetables. She also loved animals and had these two monkeys in the yard - even though I think one died. My nieces and nephews loved to visit her. We looked forward to getting some of her fresh produce when we visited and the kids roamed her beautiful land while we were there.

Sad to say, I am not sure if I will be able to attend the funeral since I start a brand new job on Monday [separate blog]. I will dedicate my thoughts and love to her constantly for the next few days and will ask my Parish Priest to include her in his dedications at Mass.

Wednesday, August 18, 2010

Am I a survivor? Then what is next?

I feel strong; my last visit with my oncologist was good; and he schedules me now for 3 month follow-up visit. However, he has not used the 'R' word: remission. This scares me but since my Faith in God is stronger, I save that feeling for a few minutes a day.

There is one small detail that I am a little nervous about: my orthopedist did a whole body scan a few weeks ago to rule out any metastatic problems in my knee. This was a source of major problems for me for the last several months until I stopped taking Femara. Slowly, my symptoms disappeared but not before I saw an orthopedist. He basically said the scan was fine but as any typical specialist, focussed on any occurrence of osteosarcoma. Well, what the 'h' do you call cancer in the bone from any primary site? Hmmmmmm. In any event, he went on to say that there is something going on in my left rib area but he thinks it is nothing and sent me on my merry way.

HUH? I asked his assistant to pass results onto my oncologist but she declined to do this. So I called my onc and he is now trying to get a copy of radiologist's report since he does not read the film unlike the orthopod. *shaking my head*. I wonder why I stay with this group. I call it continuance of care but the frustration is so overwhelming.

I am also trying to get back into the job market but this is another story that I will reserve for another blog.

Alli: I promise to be diligent :)

Saturday, July 10, 2010

Ta da

I have not posted for quite some time and now barely feeling the need to post. My main brain activity is thoughts about returning to work. I am so tired of the disability harassment. From the insurance company especially. My knees are still bothering me and I have an orthopedist appointment in a few days. There is a Bakers Cyst and a benign tumor that have appeared post Femara but there are so much problems with mobility.

Will update once the orthopedist gives me plan of care.

Monday, June 7, 2010

What's up Doc?

So I woke up this morning like a school child getting ready for the first day of Kindergarten. Ha! What a comparison. Yes, I was a little nervous since I had not seen my oncologist since March.

After reviewing my CT scan results done last Friday, he happily reported that there is no new growth but the liver lesions have not shrunk either. He felt that was good news but I just stared at him since I went through all this s**t with Femara with no success. So he decided that he will start me on Tamoxifen and that may work better. I will repeat scans in three months and if no improvement - THEN I AM BACK ON CHEMOTHERAPY!!!!!! Dread!

The MRI of the knee shows no cancer but fluid build-up and osteoporotic changes as a result of the Femara. He said that the Femara destroys the joint in some cases [yuh tellin' me] but I should stop it [sorry Doc - done that] and start on the Tamoxifen. Now I know everyone has heard of the problems with Tamoxifen: Clots clots clots - all kinds of them: Heart Attacks, Strokes, etc. But that would not happen to me cause I will begin my walking frenzy and start on daily Baby Aspirin! Plus the power of prayer!

So I am taking this one day at a time [I am allowed negative comments now and again, right?]. Still confused in my mind what I should do with my life. The doc told me that it takes two to three months for the Femara to be out of my system which means 'old lady walk' until then. I really want to work - for financial and personal reasons. I became a nurse for a reason. My next option is to do volunteer work or be employed on 'as needed' status but I am screwed with the latter. Once I start to work, I will lose all my current empolyer disability benefits and to regain them I should work Full Time for at least 6 months to one year.

Well....... in the meantime, I will continue as is - a victim of a screwed up healthcare system. The new laws need case managers and community social workers to help us navigate through the system but that takes time. Will these changes affect COBRA and all other disability benefits - whether government or private? Maybe I know too much so confusing my poor brain. Already I know that there are not enough community social workers to go around.

Let me stop babbling and start taking my new anti-hormonal pill.

Friday, June 4, 2010

Bleh Day


I was sure in a cross mood today!!! I know why but I behaved like a child and acted it out instead with everyone else except the person who deserved the wrath of my energy. Oh well, such is life.


Thursday, June 3, 2010

Testing Testing Testing

Well, tomorrow I go for my follow-up CT Scan of pelvis and chest and an "urgent" MRI of my knee per my oncologist to see what's bugging. Both will occur one after the other at two separate facilities.

I had to misbehave a little today with my insurance company representative when the clerk wanted to schedule the MRI two weeks away. I had to remind her that the request is 'urgent' per the doctor's instructions and two weeks is not urgent in my book. She called me back a couple of hours later and reported that the insurance company will send the referral to an outside provider and this is how I got the appointment for tomorrow.

I tell you, this is a struggle but I will beat it and all the negativity that comes with it. Monday I will see my oncologist who will give me all the good news about my progress. *BIG GRIN*.

I had a loooooong day and now my head hurts. I also got a new pair of false boobs [prosthesis] today from Nordstroms. This stuff cost over $300 ea but I received a referral from the insurance company since I heard that it is a benefit under my company plan [COBRA allows your policy to remain the same]. I hope the idiots do not bill me cause this will be another fight. Oh well!

Tuesday, June 1, 2010

It is only for some time

A friend of mine lost her husband in the last few days to colon cancer and today we said goodbye to him. What a great woman she is to have held on without losing Faith. However, the time came when he had to say goodbye and found his seat in Heaven.

Psalm 30:5
Weeping may remain for a night, but rejoicing comes in the morning.

Hang in there Marva James, we all love you and will be there for you. RIP Arthur James. So young to go but God has a plan for all of us.

Sunday, May 30, 2010

Oh Femara you are bad

So my onc put me on Femara last November after halting on the Adriamycin and Cytoxin for a couple of reasons. From Femara.com for those of us who need info on what this is: "Femara is approved for the treatment of postmenopausal women with estrogen receptor-positive or estrogen receptor-unknown breast cancer that has spread to another part of the body (metastatic cancer). Femara is also indicated for the treatment of advanced breast cancer in postmenopausal women with disease progression following antiestrogen therapy".

Well the critter causes serious joint complications for which I am a victim and of course has worsened because of my pleasantly plump physique:) : The most common side effects seen with Femara include hot flashes, joint pain, night sweats, weight gain, nausea, tiredness, other heart-related events, and bone fractures. Other less commonly reported side effects include vaginal bleeding, blood clots, other cancers, osteoporosis, stroke, heart attack, and endometrial cancer. I have stopped taking it for about a week now.

The symptoms in italics above are what I have experienced. The joint problems have taken me to the emergency room and the docs there mostly gave me "hands in your face" approach: "take this back to your oncologist" after they ruled out any thrombus event - clots. So my oncologist has ordered an MRI of the knee when I have my routine CT scan of my chest and pelvis next week [June 4]. I see him on June 7 BEFORE I GO OFF TO TOBAGO with my family: YEA!!!.

So there goes my anxiety on thinking that I can actually return to work. I can hardly sit, stand, or walk for long periods of time. For my plane travel in June: I will load up on motrin and Benadryl to keep my ass asleep! I will definitely try to see a Rheumatologist in the next couple of months and will determine if I can restart weight bearing exercises that I know can strengthen my leg muscles esp my hamstrings and quads. I am not giving up this fight. The dieting - I gained it over a long period of time so will take my time to take it off cause I love to eat.:):):).

I actually went back to breastcancer.org - this is a community support blog site [they allowed me back on after casting me out for a few days] and found a thread epecially for Femara: a lot of women with the same problem! Weight is not a factor at all - but as a clinician I know better. Most of the women on the drug experience the same side effects and some have given tips on overcoming it. Of course, I have been doing "all of the above":

1. OTC Ibuprofen 800 mg up to two times daily: I take this with caution since of the reported risk of kidney decline with excess.
2. Calcium 1000 mg daily
3. Vitamin D 1000 IU daily
4. OMEGA 3-6-9 1200 mg twice daily
5. CoQ10 400 mg daily
6. LAST BUT NOT AT ALL LEAST: Glucosamine [1500 mg] Chondroitin [1350 mg] MSM [1250 mg] - all daily.
also: heat wraps

I believe in number [6.] since the symptoms in the other areas of my skeletal system mostly disappeared after I started taking it again: lower spine, elbows, ankles, left knee, wrists. I feel so "bleh" sometimes especially when I want to do activity chores or errands that require constant movement of my legs. I went to church this morning and could not - absolutely could not kneel and found it difficult to do the sitting, standing thing throughout the service. I walked to church though! Took me 15 minutes for a normally 5 minute walk. I still refuse to use 'addictive' modalities like crutches, canes, or wheelchairs. That is not me and again - I will continue this fight!

To my family and friends: I love you all and I will ask for help if I need it.......... :)

Thursday, May 20, 2010

Another Day in My Life

Today I consider to be another eventful day in my journey. I have decided to live on my own once again. I am now stronger mentally and have no fears about problems with my cancer. Fear is what made me decide to move in with family after my diagnosis of the cancer recurrence last year. Since then I have prayed and meditated and with friend and family support, I realize that maintaining my inner strength and spirituality is part of my journey.

I moving into an apartment in Laurel, Maryland and plan to start furnishing all over again. I have sold and given away all of my furnishings from my last residence and feel great about that. I hope that this does not sound too crazy :)!

I still have issues with insurance and disability coverage but I have Faith that this too shall pass. I will continue to be positive and will always wear that smile that so many people like to see me wear :)!

I should be seeing my oncologist after having a CT Scan in the next couple of weeks but with no insurance coverage and no State access - who knows but again I have Faith and will keep praying.

Sunday, May 9, 2010

Sunday May 9, 2010

Well, this house is quiet once again. Quiet and lonely, at least for me. I grew up in a large family so there was always noise and activity. When I am alone now, I feel very very sad and lonely. So noise helps.

Today, me and my cousins planned a Mother's Day lunch for our family. It was GREAT! I always feel good seeing family and friends but most of all, I like being around noise. Isn't that insane? My daughter Joanne, her husband Bill, and my granddaughter Gabby were all there and they had lots of fun too. Other family kids were there so Gabby was in all her glory [she is two]!

Well, it is almost 9pm EST and I am very tired and in my bed. Tomorrow is a big day for me but I cannot write much about it until maybe later. It is not a sad thing and should have a great outcome.

Goodnight everyone and as I say on FB - "ttyl" or talk to you later!

My sister Margaret

Happy Mother's Day to my younger sister Margaret de Mille who left this earth to join our Father in Heaven on November 8, 2008 after complications resulting from bilateral Breast Cancer. May God rest her soul. Her two young sons, Dale and Derrick together with husband Trevor are remembering her especially today.

Saturday, May 8, 2010

Thursday, May 6, 2010

What a life

I am not going to post this on FB today cause I feel that this is more like a 'journal' today.

Well, I cried a bucket of tears this morning after I was told by my insurance company - and ex-employer [Kaiser Permanente] that my COBRA induction does not guarantee continuous coverage. After fighting with them for most of March and April, my COBRA statement eventually became available online about 2 weeks ago, I made the payment through my bank the next day and it took COBRA and Kaiser through yesterday morning for the payment to be acknowledged. Kaiser now informed me that this was for April and they only activate the policy on a month to month basis since this is how COBRA bills.

Now I am ready to post my May payment to COBRA, but wait: if this takes a couple of weeks, I will not have insurance until towards the end of May! Kaiser is profiting from me [!!] since they will not see me as a patient at all if I am inactive!

WHAT THE FUCK IS THIS!!! Lawyer - here I come...... I really have no other options, do I? There is no law prohibiting them from doing this but they did break some kind of ethical code by misdiagnosis in the first damn place, didn't they?

Wednesday, May 5, 2010

Look Good Feel Better

So I went to a class today sponsored by the American Cancer Society at Holy Cross Hospital. Called 'Look Good Feel Better' aka LGFB and as the name implies you walk in as 'Before' and walk out as 'After' - it is amazing.

I had a great time! I walked away with a goody bagful of great stuff from Mac Cosmetics, Bobbie Brown, Clinique etc. I was also given a bag for my sis Janet. I feel so good........

Prosthesis - Yea?

Yes - I am not sure if to jump for joy. This is a another step and another day in my Breast Cancer journey. I pray every day and I am positive about my outcome. Life throws me so many challenges and I mean to keep on fighting.

My trip today: To Nordstroms in Bethesda, Maryland for an official fitting for prostheses and bra from the insurance company.

Okay - I will say it: Woo Hoo!

Sunday, May 2, 2010

Back to Maryland

After a long day of LBBC sessions, food, more food, cab, Amtrak - I am finally back in Maryland. This will be a busy week for me as I get ready once again to make another change to my life. I will keep you posted.

Saturday, May 1, 2010

Philadelphia - Living Beyond Breast Cancer

This has been a great weekend for me. Started off poorly and I was a little depressed but improved as I arrived at the Marriott to attend a conference on Metastatic Breast Cancer. I met the most wonderful human beings who did not hesitate to discuss our disease and where it is taking us.

I learned a lot especially starting my own blog page where I can now use as my journal and to share with friends and family on my journey. Thank you Daria Maluta!!