Chemotherapy 11/26/13

Well Im sitting at Chemotherapy and Ive had nothing but a good week to report. I did have a few sick moments but considering everything I have been through last week was a good one. Thinking about how my week was pretty much just sleep and not much sick I was damn lucky. Add in the good results on the CT scan two weeks earlier and I am rolling into some good times. I’m banking on my chemo not being too bad this week since it is Thanksgiving. I better be able to wake up and stay awake during the Packers game at 11. They are a subject I am trying to avoid on these blogs since I will be able to bitch for a few days worth of blogging on them. Other than that turkey day will be nice and quiet otherwise. Just the folks and the dog enjoying the day. Then that night I am heading to Best Buy and getting a passport 1TB dump drive. My old one is dying out and I have too much shit on it to lose. Anyways, back to the cancer stuff. My health seems to be on the up and up. Energy is coming back. So I’m concerned that the chemotherapy has decided to stop working like the previous chemotherapy did. Nerve wracking but what can you do about it but carry on with the plan and find ways to deal with it. I’m going back to my cancer shrink in a couple of weeks to vent and discuss things. I have next week off of chemotherapy and then another 3 doses over 3 weeks. Then I will have NYE week off and another pivotal CT scan on January 3rd. The CT scan will be from my groin up to the top of my neck. Since my history of cancer is all over its just precautionary at this point. No, we do not think it has spread. Angiosarcoma can just pop up anywhere really. My first cancer was related to testicular cancer so its a general check up for that and a true check on my current situation. The Essiac tea has been what’s helping me out I swear it. Its not the greatest tasting thing because it tastes like some sort of nut. In the end if its doing what its claimed to be able to do then how can I argue? Anyways, the drugs are starting to hit me. Time to nap for a bit.

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Ranting and Raving 11/18/13

Chemotherapy at 9am. Who else is looking forward to getting poisoned?
A few things I have to get off of my chest. There is a lot of things I have heard people saying or mumbling behind my back.
1.) I do not travel well at all. I generally only have 3-4 hours in a day that I physically feel good enough to be up and about. My days are mostly spent in bed sleeping or feeling like complete shit. And…rew Halverson can attest to that last week.
2.) I try to do things once or twice a month just to get out and do things. Being stuck at home or the hospital all day isn’t exactly fun but being broke and living by a daily planner is the way it goes.
3.) If you want to see me or want to kick it, Its time for you to road trip to me. I have driven to Eau Claire, Minneapolis, Milwaukee and Chicago enough over the last 7 years to see people. Quite frankly I’m done with traveling (past a special event planned in December). There are a few people exempt from this and you know who you are. I am just too tired and beat to hell. When hanging with me you have to understand that I get worn out very very easily.
4.) Yes, I don’t physically have the appearance of the “typical” cancer patient. I’m not losing massive amounts of weight. I have hair and a beard. I do have boosts of energy, but I also try really hard to not put on the appearance of being beat to shit so others don’t worry about it.
5.) I don’t go out hardly ever and if I do I’m sober. I don’t drink anymore because of all the drugs I’m on. Not a good idea when you have to pound down 12 different pills twice daily. I haven’t had a drop of alcohol since I saw Wendy last so probably a month.
6.) IF YOU HAVE SOMETHING TO SAY OR ASK STOP MAKING STUPID ASSUMPTIONS AND JUST ASK IM EXTREMELY OPEN ABOUT MY SITUATION.
7.) Lastly, I ensure you all I am extremely sick with cancer. 99.9% chance of death. This isn’t like all the times before. I put on a very good face and say the right things but trust me when I say it isn’t easy and it shouldn’t be take as a piece of cake because of my previous experiences. I’m fighting like hell and trying everything I can for decent results. Scans like the last one aren’t supposed to happen and surgery is a less than 1% option. so trust me it is much more serious and I’m not in the mood for others to ignore the fact that this is something new and not the last two times.

Life 11/18/13

You know I am understanding more and more I have major physical issues. Most days I cannot be up and out of bed for more than a few hours. I hate it. Its no way anyone should live their life. I push myself everyday to get up and get going but chronic fatigue and chemotherapy symptoms really hit me hard throughout the day. Doesn’t help that this past week and weekend I’ve been fighting some sort of virus. Even with the antibiotics it is going away very very slowly. My lungs hurt just breathing and stairs are a bitch. I’ve also been dealing with flu symptoms from both the chemotherapy and virus. Its been pretty gross. I sweat through everything and have terrible cold chills. I’m hoping it’ll clear up soon. Tuesday is my next chemotherapy appointment and I intend on getting it. Surely, I will have Xrays of my lungs to look for pneumonia and what not.  Either way I don’t care. I’m ready to get poisoned again. I also started up on my Essiac Tea doses again. I swear that is the reason my tumors shrunk in size. I highly suggest people looking into it. Its a full body detox. The story behind it is quite interesting. It’s an Ojibwa health drink in orgin. Personally, The native American culture really simplifies things in life better than modern medicine. Too bad we live in a Capitalistic pig society. Anyways, That’s for another day.

Heres a link to learn about it: http://www.healthfreedom.info/Cancer%20Essiac.htm
essiac

Symptoms 11/14/13

Well today has been a long day of up and down sleeping and fading out. I’ve also been dealing with a monster headache the last two days. My legs ache and are a bit restless. I am curious if that has more to do with the little bug I’ve been dealing with. It has been pretty damn rough. My friend Andy has been gracious enough to let me crash on his couch the last couple of nights and let me just deal with my symptoms. Last night I was feeling decent but not good. Regardless, Kristi and I went and saw Third Eye Blind in Minneapolis at The Skyway Theatre. Its was a cool building and a fantastic show. They played nearly all of their hits. Kristi and I actually had a great time and didn’t argue once. It was a step in the right direction for us. The show was super freaking long, but worth suffering through the ending with my body aches and chills. I did feel bad about the ride back to Eau Claire though. I was so beat I kept falling asleep on her while she was driving. Company while driving at night is a great thing and I completely failed at it last night. Poor Kristi. She survived though.

Li Fraumeni Syndrome

I copied the definition and general information from cancer.net. From looking around this is the best one out there when trying to explain this condition. Lets hope my family is NOT a carrier of this genetic mutation.

http://www.cancer.net/cancer-types/li-fraumeni-syndrome

What is Li-Fraumeni syndrome?

Li-Fraumeni syndrome (LFS) is a hereditary cancer predisposition syndrome. This means that a person who has LFS will have an increased risk of developing cancer. The most common types of cancer found in families with LFS include osteosarcoma (bone cancer), soft tissue sarcoma, leukemia, breast cancer, brain cancer, and adrenal cortical tumors. An increased risk for melanoma, Wilms’ tumor (a type of kidney cancer), and cancers of the stomach, colon, pancreas, esophagus, lung, and gonadal germ cells have also been reported. Almost every part of the body may be at risk for cancer in someone who has LFS.

Classic LFS syndrome is defined as:

  • A person diagnosed with sarcoma before age 45 and
  • A first-degree relative (parent, sibling, or child) diagnosed with any cancer before age 45 and
  • A first-degree or second-degree relative (grandparent, aunt, uncle, niece, nephew, or grandchild) diagnosed with any cancer before age 45 or diagnosed with sarcoma at any age

There is also a hereditary cancer predisposition condition that has been called Li-Fraumeni-like syndrome (LFL). Two definitions of LFL have been proposed:

LFL definition 1 (Birch’s definition)

  • A person diagnosed with any childhood cancer, sarcoma, brain tumor, or adrenal cortical tumor before age 45 and
  • A first-degree or second-degree relative diagnosed with a typical LFS cancer (sarcoma, breast cancer, brain cancer, adrenal cortical tumor, or leukemia) at any age and
  • A first-degree or second-degree relative diagnosed with any cancer before age 60

LFL definition 2 (Eele’s definition)

  • Two first-degree or second-degree relatives diagnosed with a typical LFS cancer (sarcoma, breast cancer, brain cancer, adrenal cortical tumor, or leukemia) at any age

What causes LFS syndrome?

LFS and LFL are genetic conditions. This means that the cancer risk can be passed from generation to generation in a family. Approximately 70% of families with LFS will have a mutation (alteration) in the p53 gene. Mutations in the p53 gene are also found in 22% of families who have LFL by definition 1 and 8% of families who have LFL by definition 2. Mutations in another gene, called CHEK2, have been found in some families with LFS. It is not known if the cancer risks are the same in families that have p53 mutations and CHEK2 mutations. Research is ongoing to identify other genes associated with LFS and LFL.

How is LFS inherited?

Normally, every cell has two copies of each gene: one inherited from the mother and one inherited from the father. LFS follows an autosomal dominant inheritance pattern. That means that even if a mutation happens in only one of the two copies of the gene, that person will have the increased cancer risk. Parents with a gene mutation may pass along a copy of their normal gene or a copy of the gene with the mutation; there is not a way to control this random, natural process. Therefore, a child who has a parent with a mutation has a 50% chance of naturally inheriting that mutation. A brother, sister, or parent of a person who has a mutation also has a 50% chance of having the same mutation.

How common is LFS?

LFS is very rare. It is estimated that less than 400 families have been diagnosed with LFS worldwide. LFL is also considered to be rare.

How is LFS diagnosed?

Currently, both LFS and LFL are diagnosed on a clinical basis. This means that if a family history meets the LFS definition listed above, the family is considered to have LFS. The same is true for LFL. If a family history meets one of the two LFL definitions, the family is considered to have LFL.

It is possible to test for p53 mutations with a blood test. However, not all families with LFS will have a p53 mutation. At this time, testing for CHEK2 mutations is only available through research studies (clinical trials).

What are the estimated cancer risks associated with LFS?

Individuals with LFS have up to a 50% chance of developing cancer by age 40 and a 90% chance to develop cancer by age 60. Breast cancer appears to be the greatest risk for women. However, less than 1% of all breast cancer is thought to be related to LFS.

Individuals with LFS also have a high risk of developing multiple cancers during their lifetime. One study showed that 15% of individuals with LFS had a second cancer, 4% had a third cancer, and 2% had a fourth cancer. However, some people with LFS will never develop cancer.

It is not known if the cancer risks in LFS and LFL are similar.

What are the screening options for LFS?

Due to the large variety of cancers associated with LFS and LFL and the limitations in screening for some of these cancers, there are almost no standard screening measures for LFS that are proven to increase early detection of cancer. One exception may be breast cancer screening. For this reason, people at risk for LFS or LFL (and their doctors) should pay careful attention to any unusual or lingering symptoms or illnesses, especially headaches, bone pain, or abdominal pain.

It is important to discuss with your doctor the following screening options, as each person is different:

Annual screening for children at risk

  • Complete physical examination
  • Complete blood count
  • Urinalysis (examination of urine)
  • Abdominal ultrasound
  • Additional studies as necessary based on family history (for example, computed tomography [CT or CAT] scan or magnetic resonance imaging [MRI] scan of the head if there is a family history of childhood brain tumors)

Annual screening for adults at risk

Women

  • Monthly breast self-examination, beginning at age 18
  • Biyearly clinical breast examinations (examinations performed by a doctor or nurse), beginning between the ages of 20 to 25
  • Annual mammogram, breast ultrasound, or MRI, beginning between the ages of 20 to 25

All Adults

  • Targeted studies as necessary based on family history
  • Full-body positron emission tomography (PET) or MRI scans have been suggested, but the effectiveness of this screening is unknown.

Other ways to reduce risk

  • Individuals at risk for LFS or LFL should limit their personal exposure to radiation as much as possible; radiation exposure may increase the risk for cancer.

Screening options may change over time as new technologies are developed and more is learned about LFS. It is important to talk with your doctor about appropriate screening tests.

Learn more about what to expect when having common tests, procedures, and scans.

Questions to ask the doctor

If you are concerned about your risk of cancer, talk with your doctor. Consider asking the following questions:

  • What is my risk of developing cancer?
  • What can I do to reduce my risk of cancer?
  • What are my options for cancer screening?

If you are concerned about your family history and think your family may have LFS or LFL, consider asking the following questions:

  • Does my family history increase my risk of cancer?
  • Could my family have LFS or LFL?
  • Should I meet with a genetic counselor?

Primary Oncologist check up 11/12/13

The appointment with Robert Hegeman was great. I had to inform him of the test results and even he said it was a minor win. So here comes the comeback. Even he said I seem to do better when all of the chips are on the table and not in my favor. I don’t like being in that position but since it is a reoccurring theme it is easier to familiarize myself with the flow of the situation I guess. I am being set up with a genetic testing  consultant at UW Madison to help figure out the family history and if this disease is infact Li Fraumeni Syndrome or something else. I did get the indepth notes of Dr.Kozaks from our first meeting and I am going to scan them and post them up to show people how screwy things are. Otherwise, I am looking forward to meeting with her and sorting through everything.  I also set up a CT scan for about 2 months down the road on January 3rd. The CT scan will be from my testicles to shoulders since this cancer can appear anywhere and the first tumor I had (in 2002) was classified as a germ cell tumor which consists of left of cells in a males genitals and surrounding area. So its precautionary and out of interest.

Naturally, Dr. Hegeman and I began talking about the Packers woahs. I won’t begin a rant on that since it will be about a mile long. We also talked about the Brewers and the rumor of trading Aoki and how dumb that is despite the outfield depth. Ike Davis from the Mets for Aoki would be terrible and not cost efficient. atleast get Lucas Duda who will start. Another conversation for another day.

It was a good and constructive check up. I had chemotherapy on Monday so Wednesday and Thursday are the days I’ll really be hit with the symptoms. Good thing I’m on cloud nine right now.

Chemotherapy 11/11/13

Well once again I am here at Mercy Hospital. Its been an interesting few days leading up to today. I’ve been dealing with some sort of virus that kicks my ass at night. Cold sweats, frozen to the bone, fever and so on. I’m still receiving my chemotherapy dosage despite my white blood count being abnormally high. I kinda smoozed her into giving me the dosage despite it. I also received the results of my CT scan from last Thursday. Good news in an otherwise difficult war. All tumors in my lungs have shrunk minimally. The 4 in my sternum and collarbone shrunk minimally as well. One of the 4 in my sternum has shrunk significantly. So this chemotherapy is having some sort of effect. About freaking time if you ask me. I’m still on the pure powdered green tea mix and drinking Essiac tea 3 times a day.  Basically, I’ve got to stay the course and keep plugging along. It’s refreshing to get some sort of good news after so much negative bullshit. I’ll also be tested for Li Fraumeni Syndrome sometime soon. So we will see if I carry this terrible chromosomal mutation. It’s a 20% chance. So clearly I’m hoping I don’t. It would be nice to have some sort of clue as to why I’ve been hit so hard past having some embryonic disease.

Man this has me jacked up. Once again doing things my way are showing signs of paying off.

TTMs Sent:

Peter O’Brien (Yankees prospect)

Craig Newsome (former Packer)