Welcome to the AlexBlogosphere

Beautiful Friends and Family:

This is my  first post and for some of you the first update after the email Kathy sent about my cancer diagnosis last month. I thought we would start this to make it easier to let you all know how I am doing. I am not that good at the social media communication stuff (I think I still have a facebook account somewhere), but I will have more downtime coming up so hopefully I can keep this current.

We met with my oncologist, Dr. Jian Chen from Kaiser, on Wednesday the 8th; we got the appointment earlier than expected thanks to (my great primary care doctor.) Dr. Bluck. We had a really positive experience with Dr. Chen. He provided detailed information about my diagnosis and treatment, and was upbeat while still pragmatic about the prognosis. I had viewed a webinar about pancreatic cancer treatments on the pancreatic cancer network (PanCan.org) right before the meeting with Dr. Chen, so that was really timely and helpful in educating me on the history of this illness, treatment options, prognosis, etc.. Kathy had also done a lot of research before the appt and so had many questions as well as an idea about some of the most successful treatments she had read about. If needed, Kathy was prepared to fight for information and some of the treatment options based on advice and information she got from research and friends. To our relief, the treatment we felt would be the most beneficial is the one Dr. Chen immediately recommended. No fight and no need to be a bulldog. Kaiser had also set up a consult with the cancer social worker right after our meeting with Dr. Chen, to help us through the diagnosis. She was warm and helpful, providing great information and resources. Everyone provided phone numbers to reach them any time…and based on our experience with Dr. Bluck, they really will respond quickly and personally. They also had all my treatment and follow up appointments, as well as a consult with a dietician, set up for us by the time we ended the meeting with our social worker.

At this point surgery nor radiation is an option. The treatment I have been prescribed is chemotherapy utilizing Folfirinox and is a combination of four chemicals most likely to be successful. I have a general chemo class on Wednesday the 16th to give me more info on chemotherapy in general, then on Thursday the 16th, I have a procedure to place a PICC line in my arm. Basically its an intravenous tube that stays in my arm to provide easier and more reliable access to a vein through which to administer the drugs.  Then on Friday the 17th, I have a 6 hour chemo treatment at Kaiser on Zion, with about 3 hours of drugs via the PICC line (kind of like giving blood in reverse) and then some monitoring. During this in-patient chemo treatment, the treatment area is pretty private, with DVD and wi-fi and Kathy will be there with me. At the end of the day, if all goes well, I get released home. On Saturday, Kathy connects me to additional chemicals (at lower dosage levels) via a portable pump and the PICC line and I do 40 (or so) hours of “continuous infusion” at home. I can walk around, sleep, cook and even go out during that process (if I feel like it). After that, I have 12 days off the chemicals. I will go in for a regular blood tests on Thursday the 30th to make sure my blood levels are all good. If everything checks out, I start the process all over again on Friday the 31st with the in-patient process. These two 14-day processes are called 1 cycle. I have three cycles scheduled, through the end of March. In about a couple of months or so, they do another CT scan to see the effects of the treatment. If things look positive, we continue the treatments, if not we switch to another course.

There are of course a lot of side effects, the typical effects everybody knows about. Though I may not lose my hair…not every body does! Some people even work through the chemo process. Amazing. I am really thankful we are in a position that I can focus full time on fighting this and not have to worry about a job, etc.

As for right now, I am feeling generally okay. Just a little cramping and bloating after eating and some pain at night. And I feel more tired than usual.

In some ways it seems like a long time since we first learned about my pancreatic cancer…and in other ways it still feels kind of unreal and that we haven’t absorbed it. I have some really good days when I feel almost normal…but I am ready for the next steps in this  fight against this disease. We are all ready.  

I feel so fortunate to have you all in my life. As much as this whole thing really sucks, the other side is how much love and care have come my way, and Kathy’s way and Nick’s way. That has meant so much to us over the past weeks and will be a source of strength for me as we push this fight in the days ahead.

 Love to all,

Alex    

 

Advertisements
Standard

22 thoughts on “Welcome to the AlexBlogosphere

  1. Dawn Carver says:

    Thank you for the update! Know we are praying for you, Alex, as well as sending our love and support across the miles. Hugs to you and the family. ~Dawn (for all of the Carvers)

  2. christine terry says:

    Hi alex,

    You, kathy & nick have been on my mind a lot since wendy shared the news of your diagnosis. I so appreciate that you have started a blog and are letting those who love you, both near and far, have the opportunity to connect with you in this journey. I am sending lots of aloha your way and look forward to your next post.

  3. Wendy Ruiz says:

    Alex,
    As you enter into this new journey, try to sleep a lot, laugh a lot and know that you are surrounded with love. We are always here for you, Kathy and Nicky. Call us any time of the night or day we will be there for you guys. Now go kick cancer’s ass.

    Love you
    Wendy

  4. The Avery's says:

    Hello dear friends – thank you Alex for the update. We have all been thinking of you! We are sending lots of love, hugs, and positive vibes your way. Lots of love from all the Avery’s. xx

  5. Stacy McKenzie says:

    Hello Nick,

    I send my love and support to you every day in every way – you have a wonderful family that will support you and friends who very much care….

    Attitude is everything and laugher can really help-watch the funniest movies and programs that you can! Miracles happen and new improved cancer treatments are realized everyday.

    I had to have a PICC line for 6 weeks – not for cancer medication but for something else. Warn Kathy not to roll over on it while you both sleep (as mynow x-husband did!) or an annoying alarm will go off! (Btw-he is NOT my X for setting off the alarm lol!)

    I haven’t met you personally, but know Kathy pretty well as we have worked together. I feel I know you and Nick from the fond way she speaks about you all. Still and all, I send love, strength, patience and prayers to all of you every minute every day.

    XXXX
    Stacy McKenzie

  6. Charles Yackly says:

    I wish you the best in this ordeal. I admire your courage and resolve… and have confidence that you can succeed. My thoughts and support are with you.

  7. Kristen & Jivan says:

    So glad to hear you got an early appointment. Sending positive warm and healing thoughts. We’ll b in touch . You r my first blog. Hope my reply post is successful !

  8. Kristen & Jivan says:

    SO glad to hear you were able to get an early appointment. Yes, it’s time to fight. I am amazed and humbled at how you, Kath and Nick are keeping it together. Amazed but not surprised. Sending positive warm and healing wishes. Wishing there is anything else we can do. You know we are here for you, anytime.

  9. Jennifer Goldman says:

    Dear Alex, thank you for starting your blog. My mother beat lung Cancer at Kaiser 4 years ago and they only gave her a 15% chance of success. I’m glad you have good doctor you can work with. Our family is praying for you and I agree with the other comments about trying to do a lot if laughing! Also visualizing those bad cells exploding also helped my Mom succeed. I’m looking forward to more good news from you.

  10. Ed Plank says:

    Alex, Kathy and Nick,
    Beside sending you our love, prayers and most heartfelt positive energy please let me know if there is anything I or my family can do to help you win this battle. All my best,

    Ed Plank

  11. Karen K. says:

    Dear Alex, So sorry to hear this news. I’m heartened to see that you’ve got the essentials in place: a doctor you trust and have confidence in, a clear treatment plan, a supportive and loving (and always informed) wife and the joy of your life, son Nick; to say nothing of the host of friends sending positive thoughts and energy to you. Take Care

  12. Rod Greek says:

    Alex,
    Thanks for the blog update. Christine and I know you have the strength and stamina, not to mention the love and support of friends and family to whip this thing. Stay strong my friend and fight the good fight…as you always have! All the best to you Kathy and Nick.

  13. lynn ruiz says:

    Hey Alex

    Tony III, Tony IV, Holly & I love you , Kathy & Nick so much. Just remember everything you all need – anytime anything anywhere…we will be there.

    Lynn

  14. Vinny says:

    Alex,
    Keep up the fight of faith. Stay strong and seek spritual healing as well. I pray that you find strength as well as your family during this tough time. You’re blessed to have a wonderful wife to be by your side and a strong family to support you and lift you up during this time. I will always keep you in my mind and say a prayer for you and your family. God Bless You and Your Family.

  15. Sahar Khoury says:

    Alex, I am so sorry to hear this news. Please know my prayers are with you getting well. Stay strong and fight this Cancer. This blog is a great way to stay connected with people that care about you.
    Sahar

  16. Jim Barrett says:

    Kathy/Alex – I am so sorry to hear the news about the disease that has attacked you… Aggie sent me Kathy’s emails of 12/31 and 1/12. I think we all have stories of friends and family members who have suffered through similar attacks (I lost a sister to ovarian cancer almost 8 years ago and my last boss passed away from leukemia just over a year ago)… it is unfortunate that attacks like these almost seem too common. As the situation progresses, you might consider investigating a website called The Caring Bridge (www.caringbridge.org)… I think it may be a little more protected than this site but as the recovery process becomes more demanding, it will allow someone to post updates for you and still permit friends to respond… even attach photos (as unflatering as that might seem)! My thoughts are with you and I hope that this will resolve as quickly as it was discovered. I will stay in touch… please try to do the same.

  17. Mario Ruiz says:

    Big Al – Good luck tomorrow. As you start your Chemotherapy tomorrow know that there are so many people out there with you in their thoughts and prayers. People you don’t even know have reached out to me to let me know that they’re praying for my brother. Before you know it, 3 months will have passed and the Chemo will be over and we can get back to me kicking your butt in racquetball!

  18. Becky says:

    Sending positive thoughts your way as you embark on your first round. You have the best support system in your corner; loving family, friends and those who care. Hang in there!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s