Sunday, July 27, 2014

Huge steps in the right direction

Thanks to all your prayers and continued support I have made leaps and bounds forward in my recovery from radiation.  I even managed a mile hike at Kent Park this weekend, followed by fishing at eating out 2 times without getting an upset tummy.  So I think we are beyond the worst and are moving to new territory.  My tumor marker did go up some what but its still not as high as it once was and we still have therapies to turn to.  I also managed to go to church this weekend which was filled with hugs and support, exactly what I needed and was so looking forward to seeing.   I can't wait until next weekend.  Parker is doing great and is getting ready to start preK next month.  And on top of all these wonderful gifts our friends decided to treat us to a bed and breakfast in Galena, IL for just the two of us, we will be going in 2 weeks and I can't wait.   Grandma and Grandpa will be more than happy to watch Parker so we can get away for some R and R.   Thanks for all your continued prayers, they make a world of difference, so thank you and God Bless!   I'm working hard at my own version of PT, walking mostly, but am eager to try swimming soon too! XOXOXOX

Friday, July 25, 2014

More baby steps

So unfortunately, the radiation has left me pretty weak and I am trying hard to regain my strength.  Please pray for my continued strength and faith that God can heal all our pains.

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
Thanks,
Kristin






















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:
Goals:
-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!