Friday, March 15, 2013

Warning: Not Good News

Family and friends:
I wish I had better news to report. As it turns out, a recent ultrasound on my abdomen indicated two issues: I have a tumor on my bile duct which has really messed up my gall bladder (it’s sludgy) and the tumors in my liver are active again, causing me to have yellow eyes (jaundice).

My oncologist said it is really too late for surgery – or new medications. We’ve been monitoring the brain so much the tumors in my liver are taking over. There’s basically nothing they can do at this point. She recommended that I contact hospice for any care I need to receive regarding this transition phase of my cancer – which means a team of people to come check on me and deal with pain management. I have met with hospice and they assured me that they will help in any way possible – at least two visits per week..

Mom and dad, Chris, Erin, Jake, Joanie and Jennifer and I met with hospice reps to hear about their services.
This news is really shocking to many of you I am sure. It is to me. I go from anger to sadness to being overwhelmed with this turn of events. Hospice to me is the final journey in this cancer adventure. Even though I want to see family and friends – I really have to limit my energy and I can’t have a revolving door of visitors. Maybe I will work out a schedule. My diet is restrictive so meals are not needed. Prayers and restaurant gift cards are the best.

I feel tired and weak most of the time. Erin (home on break) has been wonderful to me. I am still happy to go to bed and night and wake up in the morning.  I feel surrounded by support; even though I think my path is a disappointment for all who had hope.  I am sorry. I don’t want this to happen and I don’t want to leave. It is just too fast, too soon.

Love to you all,

Sunday, March 10, 2013

So Tired of This Sh^%

The weekend at the beach with Chris and the dogs was nice, It was cold and rainy the first two days, and warm and sunny the last day. No one was on the beach road so driving was wonderful. I fell a few times due to dizziness and imbalance and really did not do too much damage to myself. Chris was always right there to help. It really scares him when I fall, and I suppose I would be the same way.

We came home to a living room all set up as a beach scene thanks to family and friends and it was SO cool how they had the canopy mural and photos all set up.

I am feeling really ‘down’ these days and am totally sick of having to move slowly and carefully to get around the house. I hate cancer. There are moments I want to give up. I get tired so easily – getting dressed and showered is a task. I still have physical therapy, and I will know more after my next brain MRI in a few weeks.

Thanks for all the cards and prayers and your support.

Love to you all,

Wednesday, February 20, 2013

My Fairfax Hospital Stay

Hey there! 

I just spent the last two and a half days in Fairfax hospital. I went into the ER on Sunday around 1pm and did not get discharged until 5pm last night. 

I went to the ER with one main complaint – a headache that would not go away since last Friday night. After numerous tests (PET scans, Brain MRI, multiple ECGs, Ultrasounds of  my heart, liver, gall bladder, legs, stomach) it turns out I have a blood clot in my lungs. They fixed my massive head ache with steroids and pain meds, but I had to be checked in so they could do all the tests. 

The blood clot they found cannot be fixed with meds. The blood thinning meds they typically prescribe would possibly cause brain bleeding. So I have to wait for my body to break up the clot on its own and just keep checking on it. It is in a place where it will not move or cause other problems. Well, other than the breathlessness I get when I do anything strenuous. It really explains a lot. 

So to protect my lungs from developing new clots which mainly come from the legs, they surgically implanted a Vena Tech Vena Cava Filter in my abdomen. This filter will trap any blood clots that form in my legs and keep them trapped there until they dissolve. The filter will be in place forever.

My parents were with me practically the whole time which was nice because of the many stories the nurses told me about when tests were ‘supposed’ to happen. Plus they provided comic relief.  I got to stay one night in the new tower which was like a hotel room with floor to ceiling cabinetry and a flat screen TV.

I never want to go to the hospital again --at least for a while. Now I am back home puttering around the upstairs of my house trying to stay balanced, not fall down, and retro-fitting grace’s room with things that will prevent falls in the bathroom.

Chris and I still plan our outer banks getaway this weekend. It’s all I can think about.

Love to you all,

Thursday, February 7, 2013

Therapy Helping Slowly

I have no incredible news. I took a fall last weekend at the valley house –tripped on a mat on the deck and hit my face on the deck railing. Chris and Austin were right there to help me. Luckily it was not nearly as bad as the gas station fall. I have a scrape on my face, my right knee and some general bruising. All because I am clumsy and did not look down. And of course my reaction time and strength are low.  Slow and deliberate is how I must be… which is no easy thing for me.

I just had physical therapy today. I went in frustrated and teary about how long it takes me to shower and dress and how out of breath I get. I went out of therapy feeling stronger and more confident. I have five more sessions. I really like my therapist, Lisa, at Fairfax hospital. She pushes me just enough. 

I love the cards and letters and gift baskets people send me. And of course the prayers and well wishes from countless others. I swear, it all keeps me going! 

Love and peace,
-        Annie

P.S. My wonderful husband turns 44 tomorrow (he’s caught up to me!) and I have to give him a shout out for making me walk around Target to help me gain strength and stamina. And it has the added bonus of buying or wishing we could buy stuff we really don’t need. Damn, you Target, and your amazing discounts!  Resistance is futile! 

Let's see who can see one of my tumors in this MRI image (hint - it's in the brain stem area - the bad, bad place)

Thursday, January 31, 2013

Brain the Same – Good News

Every day this week I had an appointment: I had physical therapy on Monday and Wednesday, a brain MRI Tuesday, and met with my radiologist, Dr. Bajaj this morning.

I was anxious about getting today’s brain MRI report. As it turns out, my doctor said there were no significant tumor changes compared to my last MRI 4 weeks ago, and no significant changes from my last three brain MRIs. In the world of cancer, believe it or not, this is really good news.  It’s not getting worse – and I am pretty happy knowing my physical downward spiral is linked to prolonged steroid use – not growing brain tumors.

Dr. Bajaj and his team of colleagues do not know what to make of my case – especially how the tumor in my pons (brain stem) is not showing any effects on me. In their experience, the location of that tumor typically causes patients to lose all types of body functions (the basics of walking, talking, breathing, etc.).  And if for whatever reason, the tumors do start to change or grow, I may be looking at some more radiation – if only to try to trick these little suckers. 

Although I am still at a physical low point, it’s all because of steroids.  I am down to 4mgs a day – the lowest dose in a year and a half. I’ll stay at this dose for as long as I can, and along with PT, I’ll get back in shape, build muscle, and lose weight. That’s my plan.

Physical therapy is tough. After three sessions, I am seeing some improvement in strength and balance. It sounds silly to you ‘normals’ but at my last session I was able to stand up from a sitting position without using my hands to push off the chair. It was one of the good moments in life. I am impatient – I want this to go faster. However – if I push myself too hard, I do regret it. 

In conclusion (don’t you love that phrase?!) I know something that the doctors do not. I have been blessed by the highest power. They may be puzzled about my case – I am not. I am here and alive because of God’s hand. There’s no question about it.

Love and peace to you all. I have so much gratitude for how you ALL touch my life with prayers, cards and good wishes.

More news in a few weeks