A Cancer Life Week: A Little Bit of This, a Little Bit of That

This week is one of those weeks where a bunch of important things are happening, across a wide range of my life!  I was trying to think of how to organize into a blog post – easier said than done, so I decided to just go chronological — a week in the Life of Tom!  The picture above was technically from the previous week but I had to show it – a #CannonBallLife is an mental attitude that can always be followed in some fashion, to the best that your medical situation allows, here is mine this summer! This is a week in this year’s edition of a Currently Incurable Summer Vacation!

Credit Card Exploding

Sunday

The last day of my big sister Anne’s week-long visit to San Diego.  We had an incredible brother-sister staycation together!  I (and my entire family) normally see her (and many other relatives) in an annual summer trip to my hometown in Michigan – but my pulmonary embolism (no flying) and overall health (I can’t take time off from chemo right now) put a damper on those plans.

I figured – you can’t go on summer vacation, so have the vacation come to me! 🙂 My wife and girls were having fun visiting their (Grand)parents so my sister Anne flew out for a 1-on-1 sister/brother staycation here in San Diego.  We got a La Jolla hotel for 3 nights and I (mostly) shutdown my laptop and we ate at the finest restaurants, relaxed in a beach hotel setting – it was a perfect way to spend days #2-5 of my chemo cycle. Ironically the first few days after infusion I actually feel quite good so that lined up perfectly for La Jolla – it is after a few day lag time that FOLFIRI side effects really start to hit me.

After 3 nights, to prevent the credit card from exploding (oops too late ha) we went back down to my San Diego home base for the second half of the staycation.  Still a wonderful time, just a little easier on the wallet 🙂  And it was good for me to be at home base for when the chemo side effects did start to hit – but my sister, being a caregiver for our Mom when she had pancreatic cancer, is well acquainted with occasional chemo-induced vomiting so we still had fun!

All in all it was the first time in decades that Anne and I have had an extended 1-on-1 brother/sister time together and it was a fantastic week!

Monday

Anne left for her home base back in Michigan and I had a badly needed physical rest day – and it was the last day of the chemo cycle with vomiting.  Yay!!  Aside from a brief doctor’s appointment and visiting a COLONTOWN friend in the hospital who just had a HIPEC surgery, I stayed home sweet home.  I spent most of the day looking forward to the return of my family on Tuesday! I got caught up on a lot of CRC advocacy work that had piled up during my staycation.   I also spent the day preparing for an important oncologist appointment on Tuesday – a big oncologist appointment where we would decide what treatment on my treatment taxiway I would do my after liver Y90-SIRT is done! I had my own strong scientific opinion.  I wasn’t too sure if it would match my oncologist’s – so I spent a lot of time looking up references and thinking things through carefully to construct a scientific logic argument to present to him – and then I would get very important multi-year experience medical feedback from him to make final decisions.  My oncologist and I have a unique working relationship but it is exactly the kind of relationship I would like to have with my oncologist.  A scientifically smart oncologist who I can bounce non-standard treatment options off of who then importantly acts as a realism/medical experience-based speed bump to keep my ideas under control if needed…

second_opinion_cartoon

Tuesday

A very busy day.  My oncology appointment went great!  After talking to a very nice fan of this blog, Michelle, in the waiting area, I entered the examination room for my appointment, my printed out logic argument safely in hand.  My oncologist walked in and after I reminded him we had planned at our previous meeting to do an off-label PD1-combination treatment next, we started to discuss treatment plan specifics.  Before I could get in any further words, he went through and suggested the plan I had so meticulously printed out a logic argument for.  Oh well, guess I don’t need that printout!  It was still a good mental exercise for me to go through though since it solidified the plan in my mind and made me comfortable we were choosing the best plan for my medical situation.  I left the meeting with some homework though – one aspect of my suggested plan had not been on his radar – so he asked me to find literature references to back up its clinical safety.  My oncologist is a big believer in the Hippocratic Oath which in general is a very good thing around some occasionally crazy Dr. Tom ideas! 🙂

I was sure my idea was clinically safe but I left to go looking for publication proof.  The most efficient way to find them?  Google? No….. Pubmed? Nah….. My friend & fellow CRC activist Maia who is a walking immunotherapy clinical trial encyclopedia? Yes!  I texted Maia with my literature needs as I exited from the waiting area.  By the time I was in my car in the parking garage she had texted back 4-5 references that I think will make my oncologist comfortable.  Go Maia go!

I am going to wait until a blog post later this month to tell you what the combination will be (mostly because it isn’t a firm final decision until my oncologist writes the prescription!) – but in general terms it will be an off-label PD(L)1 inhibitor combination therapy that I think makes a lot of sense looking at my current medical situation!  So in that future blog post be ready to hear my logic argument to support it – I have to find someone to give it to since my oncologist didn’t need it! Haha

The other big news on Tuesday was NewsWeek arrived to bookstore magazine shelves in San Diego!

2017-08-01_Tom on the Cover of NewsWeek for Trial Finder etc

It is VERY strange and exciting to see & then buy yourself on a magazine cover in the highlighted magazine rack by the checkout lane!  I bought up a couple of copies – for myself, for my girls’ momento box, for some friends to save them a drive to the store.  There is still something special about reading a story and looking at pictures on paper compared to the online version.  I was very excited that CRC patients/caregivers/family members across the country were being led by the NewsWeek story to our novel patient designed curated online clinical trial finder and Facebook group to help bring some order to the clinical trial madness!

BTW The rash on my face?  It is from my Erbitux treatment.  It isn’t normally that bad but in all my brother-sister fun I was out in the sun too much without sunscreen one of the days… sunburn + an EGFR inhibitor like Erbitux do not play well together!

The best part of Tuesday? My girls got home from their 3-week vacation!! Both Eleni and Amelie ran and jumped into an elevated Dad hug when they saw me.  THAT was the best part of Tuesday!

Wednesday (Today)

Plans on deck: Get out this blog update and play with my girls.  Get ready for my second liver Y90-SIRT which has been bumped up to tomorrow (Thursday August 3!).

Thursday

I am SO excited to be doing my second liver Y90-SIRT!!  I am hopeful that it will be as smooth an experience as the first one in June! The important thing though is efficacy and there is good news on that front as well!  I met with my interventional radiologist  last week and looking at my scans he believes that the June Y90-SIRT #1 was very effective with the large targeted spots still showing up on my CT-scan just as necrotic dead tissue!  This matches my monitoring CEA blood test pattern where my CEA values exploded after SIRT#1 (which is very nerve wracking to see!) but we believed it was due to a bunch of tumor cell necrosis releasing it.  My CEA values have now started to fall again, because we are past that necrosis stage and getting back down to a new baseline.  Another great part: he also believes that since my first liver lobe’s tumors were so sensitive to Y90 killing that there is a great chance that my liver lobe #2 Y90-SIRT on Thursday will be very effective too!  Woo-Hoo!

Friday

Recovery day after the Y90-SIRT procedure.  Hopefully I will follow the same pattern as June and no recovery day needed 🙂 – crossing fingers……

Saturday

My oldest girl’s 10th birthday!  Double-digit age?  Now THAT is a milestone!  She says that makes her “basically a teenager!”  Hmm.  Five years ago I would have had a hard time imagining being here for it.  What an excitement to be able to witness her special day! Woo-hoo!

So all in all a very hectic week that encapsulates so much of the kind of things all Stage IV patients have to juggle all at once as they go through their cancer lives – switching hats day-to-day (hour-to-hour) between dealing with chemo side effects, figuring out treatment plans, parenting, trying hard to retain aspects of non-cancer life, getting injected with high dose radioactive beads, giving support to fellow patients… juggled all at once.

Whew, I need another Staycation from my staycation! Sorry credit card.

To Life!

-Tom

Note added on August 4, 2017: Similar to my liver Y90-SIRT#1 procedure in June, the SIRT#2 yesterday went by without any major complication!  It was painless and after an afternoon of observation at the hospital, I was home in time for a pizza dinner last night!  This morning I woke up, still without any pain or any other symptom from the procedure, and I had a perfectly symptom free day!  Go Y90-SIRT!!!! 

10th Birthday Cupcake

22 Comments on “A Cancer Life Week: A Little Bit of This, a Little Bit of That

  1. Excellent summary of your crazy days!! Glad to hear you had an awesome time with your sister, I hope you didn’t witness too much ‘inappropriate’ seal behavior– awkward yet hilarious!! One of my numerous favorite stories from you!!! Good luck with everything coming up over the next week, you’ll do fab, I’m sure!!! LOVE YOU!!!!!!!!!!!!

    Liked by 1 person

  2. Can I ask if you are fasting and still getting folfiri side effects? Or have you given that up and if so, why? I’m fasting 48 hours before irinotecan and capecitabine and getting very few side effects. But causation or correlation? Who knows?
    Good to hear your news though!
    Barbata

    Like

    • Hi Barbara – due to pretty extreme weight loss last winter/spring as well as a struggle to maintain weight currently due to cachexia, I am not currently doing fasting. That is something I stressed in my fasting writings – I didn’t recommend to patients with weight loss issues. Now that I am not doing fasting, my FOLFIRI side effects are quite a bit worse. Coincidence or correlation or causation? I can’t prove anything with a n=1 but I believe I have seen strong correlations within my body!

      Best of luck to you and I hope you can continue having low side effects from your chemo treatment!

      -Tom

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      • Thanks. And all the best to you. My regime still keeping things at bay and looking at testing for mutations and possible alternative drugs when it stops working, as I know it will eventually. Turned down for HIPEC initially and although may have had enough shrinkage to be reconsidered, so many seem to have recurrence after that oncologist and I both think it’s not the route to go down when I am so well. Onwards and upwards for all of us! Barbara

        Like

  3. 10 is great! my eldest was 10 and my baby just born (2 of my 4). my youngest son came home from Austin for the weekend. He just turned 24. my first oncologist was a cowboy and tried high dose InfA with continuous infusion 5fu for synergy and (as soon as the riggers stopped) I ran I105 with max dosages of Tylenol. I got back to normal after a few years. not exactly the standard of care with stage 4 clear cell renal. in 2012 I did high dose IL2; the theory on it is to do just a little less harm than death, then hang 5 bags of I didn’t care what at that point and then start again as soon at the patient can breath. The ICU staff was incredible. I did a few surgeries as well. I’m out of options, but I still enjoying each day. It’s all about the day. Time is an illusion when your default position is love.

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  4. The time that we are given after diagnosis is such a tremendous blessing, especially when compared to other parents who are taken so suddenly. Every day (hour) is truly a gift, even the ones we have to endure suffering through! To life.

    Like

  5. Again, wonderfully written, so real, and so from the heart. Have a great birthday celebration with your daughter and family. Trusting all will go well with your upcoming treatment. Blessings to you and yours as you embrace life!.

    Like

  6. Tom,
    I am also a 5 year survivor of Stage IV colon cancer. Just found out from a CT scan that there are 5 spots in the left lobe of my lung. My oncologist willmeet with me on August 16th to discuss treatment. I am at a treatment crossroads, I suspect and really don’t want to have to go back to heavy chemo as I have had 2 years NED using Xeloda and a treatment of Avastin every six weeks. I also just had my76th birthday in June so let the chips fall where they may. I admire your personal endurance to continue the fight and wish you the best.

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  7. Tom, you are truly remarkable and insightful. I hope treatments continue to go as planned and no whammies! I’m happy your 1 on 1 brother sister staycation went well!

    The Newsweek Rebels is great and can’t wait to my hands on a copy!

    PEACE,
    Jim

    Like

  8. Sounds like a wonderful week! Being there for your daughters big “10” is huge. Wishing you the most successful procedure possible and a great birthday weekend!

    Like

  9. Thrilled to read such an action-packed update! So happy for you to have the family back together, too. Happy Birthday to the “practically a teenager” girl LOL…that is so cute. Has she asked for an iPhone, yet? 🙂

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  10. Phenomenal progress given the status of your stage IV disease. Wondering what you’re planning after the the 2nd phase of Y90-SIRT treatment? Are you planning on returning to immunotherapy trials after you have completed your treatment regiment…i.e chemo with Y90-SIRT? I know from previous blogs that you were planning on returning to those trials, however plans do change given certain circumstances not remaining the same….CHEERS to LIFE, TOM…you are an inspiration…TY..

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  11. I’m so happy you have such meaningful time with your sister!! Love the upcoming birthday of the “basically a teenager”-girl on Saturday (I have certain girl turning 11 at this household on Friday, considerations about cellphone yes/no still ongoing… so I get the ‘vib’ LOL).
    ‘Walking immunotherapy clinical trial encyclopedia’… a reference that won’t go unpunished, Mr. H. 😛
    Thrilled and hopeful for the SIRT tomorrow and the upcoming systemic treatment, *loving* the plan!
    Onward, friend, force of nature, Hurricane Tom!

    Like

  12. One-on-one time with your sister is sacred! Why leave LaJolla for a vacation? It so gorgeous right where you are. Keep love in your life and keep that laser focus on your cure. Always cheering and praying for you!

    Bridget

    Like

  13. Mine are going to be 12 in November. Eeeek! I’m so happy y90 is working. It’s awesome to hear “it’s old dead tumor tissue.” I’m coming close to 2 years past y90 and it’s holding strong.

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  14. Thanks for the great update Tom! We’ve been waiting for one! Glad you had fun with your sister and happy happy birthday to your daughter 🙂 Wishing you the best of luck on Thursday (it is already Thursday here in Jordan and it looks like a good day to get a Y90 procedure!!)

    Like

  15. A great and interesting update as usual Tom.You are followed from all over the world I am based near Bath in the UK and look forward to your insights into treatments and progress. I am a malignant melanoma survivor of 3 years and look to you for inspiration.All the best from your friends in the UK.

    Like

  16. As someone who had a Stage 4 Mom (GBM) and who has a Stage 4 Dad (NSCLC) … I understand good news, not so good news, bad news, ups, sideways, downs and uncertainty. And I love reading your blog, not because of your current situation (obviously), but because of your determination and logical thinking / problem solving and positivity. To me, you are quite the inspiration, Tom!

    PS I have a feeling that your work as a drug discovery scientist is benefitting my Dad, as the silver lining in his situation is that he is ALK+.

    Like

  17. Dear Tom,

    I’ve just read your last post and it is as if i was just receiving a lettter from someone I knew.
    Of course I know that you write for a lot of people fellow patients,caregivers, friends and relatives,but i can’t help thinking that I could be one of those persons.

    I have my personnal copie of the Newsweek issue where you share the cover page with others cancer Rebels. As a reader of your daily life, I am patiently waiting for sharing news adventures.
    From now on, you have to count on me, dear fellow.

    A plus de vous lire, cher Monsieur.

    Pascale from France

    Like

  18. Pingback: Going Off-Roading – Experimental Treatment Strategy Style | AdventuresInLivingTerminallyOptimistic

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