Monthly Archives: June 2010

Round 25 underway

I am now officially back on chemo, i.e. they added back in one of the meaner drugs.  The last round they took it pretty easy on me as my liver numbers were kind of a mess.  We decided to give the liver a break, going back on the chemo I was back on in 2008. This is the chemo that causes neuropathy-some of the effects I still feel from 1.5 years ago.  We have a plan to deal with that potential problem by doing an infusion of calcium along with possibly starting and stopping the treatments.  I think it was a good plan and suggestion by Dr. Leach.  Time will tell if it is effective against the cancer cells.

Today’s treatment had its ups and downs.  First the down(other than the obvious that I am back on chemo), my treatment was almost delayed 2.5 hours as they nurses, doctors, lab and whole process was just out of sync. I am a pretty patient, patient so I didn’t let it get to me.

There were a few ups…  I had a great visit with Kristin Tabor, the head of the colon cancer foundation in MN and the person in charge of all the Get Your Rear in Gear races throughout the nation.  We had a great conversation covering a variety of topics.  Kristin is a loving, passionate person that at her core just really, really cares for people who are affected by this disease.  She knows all to personally about the tragedy that goes hand in hand with cancer-but that is her story to tell.  I won’t go into all the differing subjects but it suffices to say that she is a true warrior and blatantly honest. She encouraged me to keep up the good fight.   She offered to introduce me to anyone and everyone who I felt may help me in my battle with this disease.  She, as you may remember, is the one who helped pave the way for my upcoming Mayo appointment.  I can  just flat out say that she cares for me personally and my well-being even though we have spent very little time with each other.  That just tells you the compassion within her heart.

A second thing…So far I am not feeling so bad.  Dr Duane though reminded me that by Friday night I am going to feel pretty run over.  But for now, not too bad and I even made it to help coach Brenden’s soccer team again-chemo bottle attached and all.

A third thing…I am just thankful for the regiment I am on.  I really don’t know where I would be now if not for Pat Groeper jumping in and introducing me to Dr. Leach.  He provided a fresh perspective and basically wrote up the orders that I am on now.  Prior to her jumping in and pulling him into my world, the plan was just to go back on the last chemo I was on. That chemo is very dependent on my Bilirubin number being a good number, and my number had been pretty bad.  I really don’t know if Dr. Duane would have decided to try this.  Again none of this guarantees success, but it feels good vs. just waiting around a number to hopefully get back in line.

A fourth thing…My Bilirubin number itself and i.e. Liver showed that they too can recover from that nasty radiation treatment.  My Bilirubin had been holding at 2.4 for a couple weeks.  That is not a good number when it comes to chemo’s, potential clinical trials etc…  It basically states that your liver is toxic and is no longer working well.  The oncologists were skeptical and worried.  I was confident that it would rebound and told them so.  A week ago one of my prayer partners asked what a good rebound number would be.  I told him 1.8.   I figured a .6 drop was pretty large.  He asked what normal was again, and I told him 1.2.   So he specifically prayed for that number to drop and was praying for 1.2.  He didn’t get his prayer and I had my number soundly beaten.  My number dropped to 1.5!   That is an amazing step for a liver that just two weeks ago they were very worried about.  At least Dave, I and Kristin seemed excited about it.  I know from the outside looking in it that it may not seem that exciting.   But I think it shows the doctors that my liver still has plenty of fight left in it.  The rest of my blood work was low, but not too low to take in all the drugs.

So I am finally heading for bed.  It was a good day.  As the days go on I know I will feel worse, for now I just feel blessed and thankful.

Thank you for your gifts, comments, thoughts and prayers.  They are uplifting and touch the heart.  Thank you for all who have come along side me during this journey to help me take down this “Goliath” in my life.

Love,

Chris

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Latest appointments

First thank you for all for your continued comments, prayers, gifts, food etc…  Please know that those touch our lives and hearts.  It sounds sappy but it is true.  Forgive me for those I haven’t gotten back to via email/facebook-I will.

I met with my Health Coach last week.  Not a lot happened there.  She did recommend acupuncture for dealing with chemo side effects.  Also she got me an appointment with a Nutritionist at Abbott in Aug.(that was the soonest she could work me in.)

Today I had a more productive appointment with a 2nd oncologist at Methodist.  His name is Dr. Joe Leech.  I like him a lot and he has some different ways of approaching this battle.  He is a young guy and he has kids about the same age as ours.   He is leaving Methodist to go to Abbott where my surgeons are but not where my health insurance tells me I can go for chemo.  So that is a battle I will have to work out in a couple months.  For now though he agreed to review my case.  He spent a lot of time and research going through my 2 year history with this disease.  He doesn’t offer a cure all but he had some insightful ideas on treating the type of cancer I have (Stage 4 Colon Cancer with the KRAS Mutation).  First he said we need to look at this as a chronic illness that I will always have to battle to some extent.  He said we know we have cancer that we may never completely be able to wipe out, but that the cancer doesn’t hurt me as long as it is not growing and active.
2nd he pointed out that I should never go off of the drug Avastin.  At this time he feels that, that drug is the key to me living with this disease.   Avastin is a drug that isn’t processed by the liver and doesn’t have a lot of side effects.  He said even his patients that have pushed the cancer to the point of disappearing, he still keeps them on Avastin.  Third he suggested that I go back to a chemo regiment I had 1.5 years ago called Folfox.  It is a good recommendation for 2 reasons.  First that chemo isn’t processed by the liver-so my liver gets a bit of a break, but we can still actively fight the disease.  Second my cancer hasn’t seen that drug in awhile and now we will mix it with Avastin to surprise it.  I know that sounds weird but like any medication that you are on for a long time, your body(or cancer) seems to grow immune to it.  There is always side effects of everything they throw into me.  The big side effect of this regiment is the neuropathy(loss of feeling) in the hands and feet.  I have already lost some but have also gained a little bit back.  He has some ideas to try and minimize or get around those effects.  Lastly he suggested that I  should see Dr. Grothy at Mayo to get involved in a clinical trial.  There are two new drugs that are working against the type of cancer I have.  The problem is my liver must recover yet again from the damage it has endured.  My bilirubin is at 2.4.  It needs to get back to at least a 1.8 to be eligible.  I told him I am already set to see Dr. Grothy on July 14th.  He thought that was great as that would get the ball rolling, even if my liver wasn’t quite ready yet.  Overall he feels we should be a little more aggressive at this stage as I am young and healthy-other than this little cancer thing.  Pat G. was the one who got me in to see him and I think it was a real hit-so a big thank you to her.

Overall I/we are doing well.  I am just trusting that God will work everything out-liver numbers, chemo.’s Dr. appointments, nutrition and Healing.  As Pat and I talked about today…  We scurry around making all these plans, trying to resolve this thing called cancer and He already has His plan.  He already knows what is going to happen.  He has never once said that my PET scan looks bad or that maybe I should give up.  All I have heard is Trust.  I will let you all know if I hear more.

Karen and the boys are doing well.  Life goes on…Karen’s birthday was today.  Brenden came through and got her our gifts that I had hidden.  Soccer continues, Tae Kwon Do continues, swimming lessons continue, prayer meetings continue, work continues and somehow between it all I do a little chemo.  Such is life for the Baty Bunch.

Peace,

Chris

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Back in the saddle again-sort of…

I am back at the chemo thing again.  But as I mentioned in my last post the liver numbers are not looking good.  Back around the last week of April my numbers were all doing pretty good and seemingly getting better all the time.  Since then my Liver numbers have actually gotten worse with their big change coming in July.  The key is the Bilirubin.  It is currently at 2.4 and it should be under 1.2  My Bilirubin has never been that high-ever. So due to that number I couldn’t get the strongest chemical and all my other chemicals were cut down by about 30%.  All of that is a sort of a good thing.   The liver is telling us it can’t handle any more toxins in it.  It is having a tough enough time just dealing with what it is already facing without it having to process some chemo drugs.  Of course it is a bad thing to on two levels.  One it still says that the liver was probably damaged by the radiation even if it really didn’t show its full damage until now.  The radiation beads/or seeds they put into me take 90 days to circulate through the liver for them to have their full effect.  The other reason it is bad is that I can’t really fight the tumors with all the chemicals available to me as my body couldn’t handle it.  The hope is that the liver continues to heal itself so that I can get back on track for more chemo.  I have another chemo session set up for two weeks from today.  This one was a breeze.  This chemo was so easy that I mowed the lawn, walked 2 miles, grilled some veggies and help prepare dinner and clean up after dinner-all of that is unheard of when I get all the chemicals at full strength.  I am tired, but not too bad.  Overall I still feel and look healthy.  I have no pain.  I am weighing in 167 lbs.  I have no fevers and my blood pressure is low 110 over 69.

I followed Pat G.’s suggestion and have another Oncologist meeting set up for next Tuesday morning.  The Oncologist is part of Methodist but is actually leaving to go to Abbott.  I hear he is a little more into clinical trials and also tries a few more things than my current doctor.  Not sure what I will learn and if it will be anything different, but it can’t hurt to get a lot of eyes looking at my case.

Thank everyone for putting up with my last post and some emails.  I have been tired and stressed which don’t always lead to proper grammar.  A long overdue thank you to Dan D. for shooting that wedding last weekend for Karen.  Also thank you for everyone for your encouraging words and kindness you have shown to us.  If you feel you have a specific verse that is calling you to give to me/us, by all means send it our way.  Of course thank you for your prayers.  I have been pretty at peace lately.  I think my last real fear burst(1-2 min) was Sunday morning-right before Proverbs 3:5-6 came back into my mind.  I will post more about my feelings soon and some pictures of our trip last weekend with the guys.

Love,

Chris

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Some bad news

Many of you have already heard about this.  It has been a tough week.  I have found out through 2 different doctor visits that my cancer has grown and expanded.  I now have 5 tumors in the liver and 3 in the lungs.  Last week I believe the nurse I talked to either didn’t know or didn’t want to tell me what she knew.  The MRI shows tumors and the PET scan confirmed that the 8 listed above are all active

What Happened? The radiation treatment didn’t work and the cancer cells had time to grow and expand since there was no chemo involved to keep it in check over past 5 months.   Dr. Sielaff explained that radiation works really well for some people and for others it has no effect.  But they can’t tell who it will work for and who it won’t until they try it.  I can’t remember how the doctor phrased it but basically he said my case and my lack of reaction to it was highly unusual.  Long story short, the only way to now fight the disease now is to have chemotherapy.  Chemotherapy kills cancer cells but only is 16% of the cases does it actually kill off colon cancer.  Also, this all gets that much tougher as now we have added another organ to try to fight the disease in.  Surgeries are almost completely off the table at this point.  Dr. Sielaff, my liver surgeon, said he would always review my scans and still considers me a patient but I basically get turned back over to my Oncologist.

I am going to have my case reviewed by another great oncologist at the Mayo clinic, but that won’t happen until July 14th.  Between now and then I will just be doing chemo. at Methodist Hospital.  The President of the Colon Cancer Foundation here in MN helped that appointment happen-even as she was on a trip to NY.  Her name is Kristin Tabor and I barely know her but she has been just another person who came out of no where to help a person in need.

I asked Dr. Sielaff if there was anything that I could do to support the liver.  He said the liver was not my problem but rather my immune system.  He said my immune system needs all the strength it can get as it is losing to the cancer cells at this point.  So he referred me to a Healing Coach that mixes Easter Medicine and Western Medicine.

I start chemo again Wed. morning.  Another small twist to that.  Dr. Duane feels that the radiation damaged my liver and due to that I can’t have a full treatment.  So for better or worse, my first treatment will be a smaller version.  If my liver heals up enough then I can get the full treatment in the future.

Right now things look bleak.  In fact my Oncologist offered me the option to not treat the cancer and basically I could live out the rest of my life feeling healthy.  That is not really me.  I am ready to keep on fighting and continue to pray and trust that I will be healed.  Overall we are doing o.k. but are accepting all prayers. We told the guys this weekend that Dad is going back on his medicine bottle so they are mentally prepared.  We had a great little mini vacation to the Dells this past weekend.  We pretty much slammed it in since it was the last weekend for while that I will be feeling this good.  Thank you to everyone who stepped in to help with this.  A special thank you to Karen’s Uncle Jeff for our surprise once we got to the Great Wolf Lodge.

Prayers for peace, trust and a complete healing are all still in order.

A big thank you for caring about me and my family and all the prayers you have already sent our way.   My life is still in God’s Hands, not the doctors-even though they are doing their best.

Pray for the cure June 21st at Hosanna 7 p.m.

Love,

Chris

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Cancer activity found

So the test today revealed that the 2 tumors both show activity within them so they are alive.  Beyond that I am not sure what happens next.  Basically the doctors are meeting this week as a group to decide what to do next.  I have a meeting with Dr. Sielaff next Monday morning to discuss whatever plan they have came up with.  So the two options, I think, are to be put back on chemo or do another more potent radiation treatment.  So until next Monday morning it is anyone’s guess.  I guess the good thing, that they don’t really talk about,  is that there appears to be no other cancer activity in any other organs.   So it looks like another long week of waiting.

Thank you for all your thoughts and prayers.  We are just trying to enjoy every day and remain peaceful about everything.

Chris

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Tuesday June 8th we will try it again

Tuesday morning I will have a PET scan and a CT scan.  I am guessing that I will hear some results by late Tuesday afternoon.  Until then…prayers welcome!

Chris

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Inconclusive results

So after almost two days of waiting they have decided to do more tests.  The MRI shows that both lesions actually grew vs. shrink.  Basically they said not to worry because they feel that it doesn’t make since with the treatment I had.  They said that it could actually be all dead tissue.  So the plan now is to have a CT and a PET scan done to try and see if the lesions/tumors are active.  So now I wait again to get those scheduled and then wait again for those results. 

So I am doing my best to remain as peaceful as I can about everything and continue to enjoy my “break” from all treatments right now.

Thank you for caring to check in and for all your thoughts and prayers.  Healing is on its way.

Chris

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