Steele

Yesterday I learned that Scott Steele won his battle with cancer. Scott had battled stage 4 colon cancer for five years. Scott shared parts of his journey while being a DJ for KHAK (98.1) and we listened to him almost every weekday morning. I found out within the last week of Kristin's life that Steele had left the KHAK morning show to pursue other endeavors. I shared the news with Kristin. She was concerned about how he was doing. I assumed his health was still stable since I had not heard otherwise. Steele had a Caring Bridge site online where he shared more of his journey. I did not follow this, but I think Kristin read some of it.

A few years ago KHAK had a snow blower giveaway. They were planning to choose the winner based on letters people wrote about why they should receive the snow blower. Kristin's letter was chosen by Brain & Steele. The snow blower has definitely been a blessing to us. After that Kristin and Steele became Facebook friends. I am not sure how much they interacted, but I believe she took comfort in knowing that he was winning his battle and staying strong as well. I know I took comfort from his strength.

I pray that Steele and Kristin are both celebrating their victories in heaven. I pray for Steele's wife and newborn son. My understanding is that they were not supposed to be able to have kids and their son was an unplanned miracle from God. I pray that their son can understand the strength his father had.

Parker and I are good. We are grieving and mourning. It feels like it has been three months since I have talked to Kristin and not just three weeks. The thing I miss most is laying in bed and talking until one of us would get too tired to talk anymore. It was always so easy for us to talk. I have never had such ease of conversation with anyone else.

We are continuing to live. We are so blessed with such great friends, and families and our church. The evenings this week were a little tough, but God must have let some people know. Parker was invited over to a friends house for a play date. Some other friends invited us over to frost cookies with them. We had some company today, and Parker went to a birthday party. Tomorrow some friends are having us over. So that has been helpful. I'm not saying we need that much to do all the time, but it is nice sometimes.

Thanks for everyone's support and prayers. Until my next post. God bless!

Patrick 12/20/14

Kristin mentioned in her last blog post that she should have labeled her blog differently. I think a good label would be, “I’m not going to die, but live on-blog”. It is quite evident to me that Kristin is going to live on. The outpouring of flowers, plants, cards and gifts to Parker’s college fund have been amazing. It is even more apparent to me now how she was able to touch people’s lives and change them. That change that she made to people is part of the way I see her “living on”.


I am planning to continue Kristin’s blog by adding parts of my journey with her and into the future. When I shared this idea with a friend she suggested I could add some of the things I was thinking about or going through when Kristin posted some of her blog entries. I know Kristin’s blog has made a difference in people’s lives. I’m sure she realizes how much now. Hopefully some people can find some use in what I post as well.


There are many things that I plan to save and share or pass on to Parker in the future. If you would like to have him know one day how Kristin impacted your life please send me a message on Facebook or ask for my email. I will save these for him. There will come a day that they will mean a lot to him.


Parker reminded me the other day when I was feeling down that I don’t need to be sad because Mommy is everywhere. He told me later that night that he is happy because Mommy is in heaven. I am so thankful that we have been able to help him have such a strong faith. Parker’s words made me think about something that I have tried to remember throughout our journey with cancer. No matter how heavy the cross is that we may be carrying it does not mean that the weight we perceive is more than the weight someone else feels from their cross. It is funny that part of what has made me think of this is an episode of MASH.


Many people have told me that if there is anything they can do to please let them know. I will probably not be as good at this as Kristin was, but I will try. A friend told us when Kristin was first diagnosed that we would likely receive lots of offers for help (We did and we are so thankful). He also said that the help provided would not only be a blessing to us, but accepting the help would be a blessing to those that gave it.


With Christmas approaching and these other thoughts going through my head another that comes to mind is “It’s a Wonderful Life”. It really is in so many ways.


Patrick - 12/17/14

Kristin Beats Her Cancer

I have told Kristin a few times over the past few weeks that cancer cannot win. In the end the cancer will die, and You will be in heaven. Well November 28th is the day that Kristin beat cancer. She is in heaven now. I asked her to find my grandparents and play a game of cards with them. One of my grandpas will need a partner for the game since grandma is still here with us, so I asked her to be his partner. I also asked her to give her mom a hug and make a quilt for us. I am certain that she has already played some cards, shared some laughs, given her mom a hug and they are sewing now. She is at peace now. She is in no more pain. She is free and with God in all his glory. We are so thankful for all your support and prayers. God Bless!

I will love you forever. You have been my best friend, my lover, my honey and my everything.
Patrick (Kristin's husband)

Fight is on

I probably should have labelled my blog, as I don't want to die soon.  Because sooner or later we all have to face the facts that we will die, and we have little control over when or how it happens.  As a friend told me, some of us just graduate earlier that others. 
As for me, I am sadly headed down hill and am in need of some prayers again.  The cancer in my liver has made my liver hard as a rock and very uncomfortable to bend over or lean forward.  I am on oxygen at night and when I exert myself.  I'm slowly loosing control over my life and am having to lean on loved ones for help.  If you have volunteered and I have yet to call on you, be patient, there will be plenty of help needed and I have no doubt that you love us. 
My tumor maker is up yet again and I have chosen to switch doctors to get another opinion, she's much more positive that my previous doctor and I hope she has some more tricks up her sleeve.  But in all honesty, there is little left for the doctors to do, it is now up to God.  Thanks for all your prayers, I'm sorry I can't answer every card, but know they are greatly appreciated. 
((HUGGS))
Kristin

Short ER visit

Sorry I've been MIA on facebook and church events.  I was admitted to the hospital on Friday night for a fever of 104, then they were concerned about my cardiac perfusion growing and possibly my liver hematoma growing. Turns out everything is stable for now but my liver hematoma is large and extremely painful- I'm hoping that means that the cancer there is dying and causing alot of inflammation and thereby causing the fevers.  Hared to know.  Thanks for all your calls and concerns.  Right now my biggest need will be getting rides during the day to appointments while I'm on certain drugs I can't drive  I have this week covered already thanks to family.

Bad news, I am sorry

Greetings friends and prayer warriors.  I have bad news and I want to get it out before you hear it second-hand.  The cancer has progressed into my liver and the doctors believe that if it doesn't respond to the new therapy we could be looking at months.  So....... that leaves me planning for the future, leaving Parker with lots of birthday cards, graduation cards, letters, videos, songs and so forth.  I am not scared, I have come to terms with my disease.  But whatever prayers you can muster, would be greatly appreciated.  We want to pray especially for Parker and Patrick.  And obviously we pray that we get more time than just a few months.  Feel free to call me at anytime to chat, I want to reach out to all those who have reached out to me and give them a big hug.  I still have time for lunches, coffee breaks and ice cream runs.  Plus I'm frequently at the hospital, so if you work there, we can always find time to meet up.  I am getting radiation to my knee for some met pain.  But other than that which will soon subside I am pain free and loving life.  So help me celebrate!
Kristin

Minor set back

So while we were having the time of our lives at this year's block party, I got tired and dehydrated from some diarrhea that has been plaguing me for weeks.  That night after missing out on alot of the afternoon festivities due to needing to lay down, my blood pressure dropped dangerously low and we ended up once again at the ER.  Turns out I have C. diff, a bacterial infection of the gut that causes diarrhea and dehydration.  I was hospitalized for 2 days and sent home on an antibiotic to treat the infection.  But its not without a fair share of inconveniences, even after the diarrhea stops, I still have massive bloating and fevers.  But they are getting better.  I had great care as always at the UIHC, thanks everyone there.

33 and thriving!

The last three weeks have been great.  I don't have alot to say, but thank you for all your wonderful prayers, I know God hears them and answers them in His time.  A huge thank you goes out to all the wonderful women of my quilting group who each assembled an individual block of a quilt which was sewn together into a beautiful friendship quilt.  I won't mention any names on here, but you know who you are.  I absolutely love it, and it is so soft and it is my main go to quilt now when I'm napping.

Our son moved up to preschool this fall school year!  He likes his teachers and loves all the new toys and new class mates.  We are working on staying dry through the night, and working on controlling ours (and his) frustrations when things are challenging.

I love being a "housewife", doing cleaning, cooking, and laundry meanwhile squeezing in quilting, card making and knitting.  It keeps me busy.  My latest project is a "memory" quilt for Parker.  It is assembled from clothes he has outgrown, fabrics of favorite activities, sayings and other important or loved fabrics.  Its going to be a wonderful gift which he will cherish forever.

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

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.

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. 

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

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. 

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. 

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!

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.

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