Steve and Jodi Knudson's Journal
Happy New Year
Written Jan 7, 2014 5:47pm by Jodi Knudson
As hard and heartbreaking as last year was, it had its good moments too. We were certainly blessed with an outpouring of good things, spirit, and support from so many people. Thank you to each and every one of you!
For Christmas this year, Steve had two watches. I gave each of the girls a watch of his. When Steve passed away, the funeral home took a thumb print of Steve's and made it into two silver medallions which was then put on silver chains. They will always have their dad with them no matter what. The last gift from Steve to the girls was he wrote them each a letter. He had written it at the beginning of summer (before he fell off the ladder). Needless to say, it was a very emotional Christmas morning.
2013 ended in typical fashion. The day after Christmas I got a fever of 103.4 from a kidney infection. Kappi took me to the ER and then I got put in the hospital for 3-4 days. A few days of IV antibiotics got the infection under control and more oral antibiotics to take at home - hopefully the infection is gone!
My tumors are sprouting up everywhere. It seems like each week I find more tumors. Ugh. After talking with my doctor, we know we don't need to scan my body as the current chemotherapy clearly isn't working. We are switching me to another chemo drug and keeping our fingers crossed that this one will work. In the meantime, she is sending a tumor tissue sample to FoundationOne so they can run a genomic profile. This profile will identify the molecular growth drivers of the cancer and help my oncologist match them with relevant targeted chemotherapy options. She has done this for 3 of her patients (not including me) and only 1 patient had a successful outcome. The other 2 patients went on clinical trials. It will take about 6 weeks to get the information so in the meantime, I will try this chemo drug that I have never been on before. Keep your fingers crossed!
I don't have my port a cath back in yet. I scheduled an appointment with my surgeon so hopefully that will happen very soon. My veins are so bad. They can only use one arm and those veins collapse all the time. It is truly a nuisance.
Sophie is doing well. She has completed all of her college applications and is now waiting to hear which colleges want her to attend their school. They don't need to let her know until March/April so we are on pins and needles until then. One college, PLU, has accepted her and given her a merit scholarship. She is waiting for the others to answer before she makes a decision. Now Sophie is working on scholarship applications. College is expensive!
Olivia is doing well. She is working hard on her school studies. In February she will be trying out for the school's flag team. It would be a lot of fun for her if she makes it. Olivia will be playing spring soccer too, which she is looking forward to it starting.
All in all, we are doing okay. Good days and bad days are a regular part of our routine. We miss Steve terribly and keep him close in our hearts, minds and words.
We hope everyone has a good new year and look forward to many good times ahead.
Second Verse Same As The First...
Written Dec 5, 2013 10:42pm by Jodi Knudson
A couple of weeks ago, a friend noticed a white dot on the tubing of my portacath where there are calcifications (which I affectionately call my barnacles). I mentioned it to my oncologist and was sent to the surgeon's office. The calcifications are breaking through my skin.
As my luck would have it, my surgeon was on vacation so I saw his associate. She set up an appointment for me to have my port removed and a new one put in. This surgery was scheduled for the day before Thanksgiving!
I showed up for the surgery and was on the operating table, put under "twilight sleep" only to wake up to find out that this calcification is the worst case they had seen and they didn't do anything. The doctors needed to consult with other surgeons to figure out the best plan of action.
Today I met with my surgeon and am now scheduled to have the port removed on Tuesday, Dec 10th. It is just a day surgery. He wants to remove the port and the calcifications, let the area heal for 3 weeks or so and then put in another port. Keep your fingers crossed that everything will go as scheduled and there will be NO complications.
I will continue to do chemo as I am healing. They will need to put the chemo drug into my arm veins - which is fine but not for the long term.
This newish chemo is a bugger. It makes me sick and tired - literally. There are medications to combat these but it can get out of hand really easily.
Did I mention how much I love insurance companies? Today my doctor prescribed a medicine that would help with some of the side effects that are bad and the insurance company decided that they don't cover that. They wanted to charge me over $700 for ONE BOTTLE of this medicine!!! Needless to say, we are fighting this and trying to get the insurance company to cover this. Ugh. Yet another stumbling block.
Sophie and Olivia are doing good. Olivia is involved in the City Tournament with her soccer team. She loves being on her team and the coaches are outstanding. Sophie is busy with applying to colleges and scholarships. We will find out in March/April which colleges accept her.
Thanksgiving was nice at my brother's house. We miss Steve terribly. It's those little things that get us - out of the blue. Time to carve the turkey, which was always Steve's job, and I lost it. Peeling potatoes (which I didn't have to do this year) was another hard moment. We always did it together at the kitchen table watching the Macy Day Parade. We are finding different ways to honor Steve this holiday season since it was always his favorite time of year - the lights, decorations, sweets, music, friends and family.
We hope you all enjoy your holidays and take time to appreciate things that matter in your life.
Merry Christmas and Happy Holidays,
One Step Forward Two Steps Back
Written Nov 13, 2013 10:19pm by Jodi KnudsonThe past 5-1/2 weeks have been difficult but we are starting the healing process. Missing Steve is a daily part of our lives and we include him in our conversations, laughter and tears. It breaks my heart that he will be missing so many milestones of both girls. We take comfort in the thought that he is watching over us.
I was debating whether to keep this blog going and have decided, if for nothing else, it will be a good journal for Sophie and Olivia later on as they begin their own journeys.
Last week I had a CT/PET scan. It was not good. My cancer is spreading and we changed the chemo drug that day. I have tumors popping up just under the surface of my skin on my shoulder, arm pit, left chest, and the top of my head. We are trying a topical chemo drug on those tumors. The other tumors that showed up on the scan are in my right breast (never had cancer there before), multiple tumors on my liver, lymph nodes and pleura. Damn! This new to me chemo we are hoping will shrink these tumors. It makes me tired and I have to be extremely careful that I don't get dehydrated or sick.
Sophie and Olivia are such troopers. I was worried that they are getting "numb" to all of the turmoil that happens to be a part of our daily lives. We are going to check out a group called Safe Crossings which helps families deal with loss. They have a special program for teens that I hope will be beneficial for both of them.
I finally got all the paperwork needed to close up some loose ends. The next week or two will be spent dealing with that. This has been such a huge learning experience that, frankly, I didn't have any idea what was involved. Steve and I thought we were pretty organized as far as end of life things were concerned but there is so much more to it. Thankfully I am almost done. Whew!
People have asked if we need anything or if they can do something for us. The answer is not at this time. We are doing okay financially and are getting help on the emotional side of it. Thank you very very much!
We hope everyone has a wonderful Thanksgiving and is able to spend the day with people you love. We will be with my family celebrating and remembering why we are thankful.