Tuesday, July 8, 2014

Baby steps

I've changed my mind about moving to a caring bridge website as it is too much trouble.  So I will continue to keep you updated here.  Pain is gone, 2 more doses of radiation left,  nausea really a pain in the butt right now.  Please prayer angels, pray for me to recover from nausea and rejoin the party that is my own life.  Today at chemo, I was too dehydrated to get chemo, so I just got fluids. 

Wednesday, June 25, 2014

Prayer warriors help, I am struggling with pain spreading throughout my skeleton!  I've been in the hospital since Sunday to manage my painful bone mets.  My docs say I I may only have months to live, but no one can predict.  It depend on how I respond to my therapy.

We don't need any meals, right now, but if you are willing to help in person (or in spirit), I might take you up on it.   First off we need prayers.  Pray that the medicine keeps the cancer at bay or sends it running for the hills.
I am getting help from hospice, and they will aid at home.  I will have nurses and aids come to help with adjusting my meds, therapy for post radiation, and driving me to some appointments.
If you want to help, contact Patrick or I privately and suggest a way you can help,  here are some suggestions.  Please ask before you do something so we don't end up throwing out food we don't have room for.

1. Offer to babysit
2. Offer to mow the lawn
3. Take Kristin grocery shopping,
5. drive Kristin to appointments or help her at work to clean out her desk
6. Stop by for coffee, you now know I can't drive, but I have a coffee pot, and a keurig

My uiowa email has been terminated, my home Emil is ness.kristin@gmail.com

Wednesday, June 11, 2014

New therapy MUST be working

Good news, the new therapy must be working because for the past 2 weeks, I've had the most horrible "tumor flare" ever.  My left femur hurts so bad I can barely climb stairs.  I'm mostly at home as I am in no shape to work, I am in chronic pain and on high level of pain relievers.  The doctor said that the thought is that the more pain you are in during the flare, the better response you will have from the treatment.  That doesn't indicate how long the therapy will work for, so we still have much to pray for, but we at least have a game plan for now. 
To clear up confusion from my earlier post, its not that I don't want to talk about my cancer, its that I like to talk about other things too, like normal things.  If you are concerned and want to talk to me about my situation, please talk directly to me, I am open to talking about my cancer.  But please remember to respect my wishes when it comes to treatment choices. 

Thursday, June 5, 2014

Time to establish a new plan and a new normal

PET results are in, and major changes MUST take place.  Sadly the cancer has advanced significantly, both to my lungs and to innumerable lymph nodes in my chest.  This is without a doubt now going to take a miracle.  I still believe that I'm NOT dying, because I will live on in Christ always, just as we all will one day if we believe.  During this very difficult doctor's appointment, I was able to drag a timeline out of my oncologist, and he said that if the newest therapy does not work, we'd be looking at 6 months of "good time" where the cancer would be still asymptomatic, after that I'm assuming shortness of breath, pain and all that would be part of the equation.  So now is the time to live!  Whooowhooo.

Of course it was not easy to celebrate when you just lost 50 years of your life. First we need to discuss therapy- I am now on high dose estrogen (estradiol 6 mg), which in his words "the estrogen-starved cells are so excited to see that they get drunk and die within the first few days"  this causes what's called a tumor flare, which I'm definately experiencing (whooohoooo- good thing),  I have terrible joint and bone aches, so bad, I am on a schedule of some pain relievers every 4- 6 hours.  The cancer cells are dying with such rapidity that I'm feeling my bones almost falling apart.  So I am shut up at home sleeping mostly trying to stay out of pain.

I've put together a list of goals that I want to achieve in the next 6 months:
-First would be to enjoy more time at home, stopping work, volunteering at Parker's daycare and writing letters to my boys as they grow up, exciting but also difficult work, so that's why I've got such great friends.
 -That brings me to my next goal of spending more time with friends and family doing anything and everything from fishing to camping to wine sampling.
 -My final goal for now- is to live a totally normal home life, make dinner for my family, kiss my hubby when he comes home, play with Parker at the park, go to church on Sundays and act like nothing has ever happened.  I don't want Parker to remember this as a stressful time, but a joyful one. As I come up with more ideas and plans I will share them. 

FYI: I'm really sick about talking about cancer, second opinions, trying new therapies, etc so if you have time and want to chat I'd love to catch up on you, life in general and anything besides cancer. 

Wednesday, April 16, 2014

All is good

All is good!  We are managing life pretty well despite some challenges.  Tumor markers appear stable, no pain from cancer, however I have this annoying and unpredictable pain in my feet from neuropathy, that would be nerve damage from prior chemotherapies.  I am trying various narcotics, lyrica, over-the-counter treatments, and so far I haven't found the cure.  The lyrica is supposed to specifically treat nerve pain and neuropathy, so I'm slowly increasing the dose and giving it time to work. 

We had a great trip to Orlando, we took advantage of a company called "Memories of Love" and we got tickets for Patrick, Parker and myself to both Universal Studios and Seaworld for free.  We even got the golden ticket at Universal Studios and Islands of adventure and got to go to the head of the line for ever single ride.  We decided to get our own sleeping accommodations as we brought Patrick's parents along, so we shared a lovely 2 bedroom condo off the Disney grounds.  We also went to Disney World and Epcot, it was a vacation of a lifetime.  Just prior to leaving I was diagnosed with strep throat and bronchitis, and went on a nebulizer and antibiotics for 10 days, I thought I was well and good, but upon returning, unpacking and cleaning up the house I started noticing the same symptoms again.  Yep, with a 103 degree fever it was back to urgent care with strep throat again.  Finally after a few days, my fever broke and the body aches became manageable again.

I did get my two antibodies yesterday, Herceptin and Perjeta, no problems and even the "poor man's tumor marker", my LDH, fell 200 points, so hopefully we'll hear some good news in a few days about the tumor marker itself.  I'm considering acupuncture as a back-up if the Lyrica doesn't start working soon.  While on vacation I survived by using a scooter and taking slow release morphine and rapid release percocet, which both made me very sleepy.  It was fine for vacation, but its not something I want to become dependent upon.  Thanks for all your support!

Thursday, February 20, 2014

Challenges and yet peace

So as I write this update, my future sort of hangs in the balance, its clear to me that my current therapy is no longer working (new aches and pains, and increasing tumor markers), and painful neuropathy in my hands and feet/ankles.  But I have no idea what my oncologist will decide to try next.  I thought halaven was a gift from God, and for awhile it really was, but then the painful burning sensations, loss of feeling and pins and needles feeling started to rear its ugly head and has left me needing to rest and get off my feet more and more.  I really like my new job, but am learning that I need to pace myself and find out ways to do my job without exhausting my feet throughout the 8 hour day.  I had my blood taken today for a work-up and we will learn on Tuesday what the next course of chemo will be, thankfully I still have options, as God is still keeping an eye on me and my loved ones.  It has been a pleasure to have hair, all 2 cm of it, but I love it short and couldn't ask for an easier hair-do.  If I loose it yet a third time, I will understand.

Poor Parker came down with influenza A, and so I got the pleasure of staying home with him to watch cartoons, play with playdough, do some cleaning and as always push myself overboard on activities.  Now I have to rest with my feet up, dose up on pain killers and wait as my feet feel like they are burning right now. 

My guess is that the doctor will put me on an mTOR inhibitor like affinitor with an anti-hormone therapy backup along with the two antibodies I currently take.  So I'm scared, I've heard and read alot about affinitor causing terrible mouth sores, rashes, itchiness and general chemo issues.  And then I know from experience that the anti-hormone therapies cause joint aches, which means I'll need to be a schedule of ibuprofen 800mg twice a day to just function and then dilaudid or morphine on days I have break through pain.  Maybe he'll pull a fast one on me and find a different combo that won't have as many nasty side effects, pray he does, as I'm not looking forward to sacrificing any ounce of my quality of life.

Here is a picture of my stylish new hair cut.

Saturday, January 18, 2014

New numbers new position and a new me

Just kidding, I'm the same old me, just feeling a whole lot better.  Sorry I've been MIA, got busy with work and just didn't take the time to update you all.  Bottom line is I have stable disease.  Tumor markers are not in a sharp downward spiral, as much as I wish they were, but they're slowly decreasing (at least over the last 2 months) now that I'm on Havalen, Perjeta (Pertuzumab) and Herceptin (Trastuzumab).  Pain comes and goes, but I'm not exercising in this bitter cold weather, so I sort of expect alittle stiffness.  As long as the pain doesn't worsen, its usually normal wear and tear and not from cancer activity.  And even if it was, I would just take some motrin and forget it. 

Getting off taxotere was a bit of hell, I lost 20 lbs, my appetite was non-existant and was near to vomitting day and night.  But now that its been out of my system for 2 months I have come to a stable weight and regained most of my appetite.  I am even re-growing hair!  Its very dark and soft, but its about 1/2 cm long and thick!  I'm excited to sport my bald head as soon as the weather improves.  For now, I've given up on the wig as it is simply to much hassle and I wear scarves or hats OR nothing.

I'm starting a new position in research, now as a research assistant and I'm looking forward to learning new techniques and working up to full time.

Parker is a busy little boy and keeps me on my toes, he loves to recant things he learns at "school" aka daycare and tell us who is and who is not invited to his birthday party.  Seams to change daily.  Thanks for all your continued support. God bless