Glimpses of Normal Life

I went and got a haircut this week.  No that was not meant to be the single most boring start to a blog post in the history of cancer blogging – it was meant to make a point.

I was excited to go get a haircut!  Why?  It has been months since my last one.  I was largely bedridden and 100% housebound (aside from medical appointments) for a couple of months last winter-spring, making haircuts forgotten & abandoned.  I was also 100% focused on my own personal cancer treatments/planning and the launch of the MSS CRC Clinical Trial finder – so it kept getting pushed down the to-do list, never to be done.  But this week I did it!  AND I LOVED IT! Why?  It was a sense of normalcyA return to my pre-disease take-off life where maybe I had cancer but it was just spots on a scan.  I sat in the barber shop waiting area just like everyone else.  I chit-chatted with my long-term barber Johnny just like everyone else.  I felt like a normal person just like everyone else.  For an hour there I could suspend thinking about cancer and just focus on being a normal human being doing something perfectly normal.  One thing I think most caregivers/friends/family members don’t realize is that it is actually the little things like this that can matter the most to a patient.  So if you want to treat them to something – it doesn’t have to be something extravagant – instead treat them with a short return to NORMAL LIFE!  I was thrilled to be sitting in that barber chair – seemingly small things can mean so much!

Race Car

But then cancer intruded.  Luckily towards the end of my haircut.  One of the chemo drugs I am on is “irinotecan”.  It’s slang name is “I run to the can”.  While Johnny was finishing up I could feel the faint rumblings in my GI – chemo had realized I was enjoying a moment of normalcy and was preparing to fight back – and boy did it ever.  I finished up the haircut, promised Johnny I would see him soon and jumped in my car and drove the short drive home as if I was in the San Diego Grand Prix.  I had a double-whammy.  First I had diarrhea.  Then I vomited.  Then I felt better.  This is the intense daily highs and lows of Stage IV life.

This all happened on my “chemo off-week”.

That is a big change that has occurred recently and has taken some psychological work to deal with.  I no longer have an “off-week” from my chemo.  My chemo side effects now stretch all the way through week #2 to the next infusion.  There are no breaks from the side effects.  But medically, I can’t take a break from chemo.  The side effects are “tolerable” (you get remarkably used to vomiting and diarrhea – my meds reduce them but don’t stop them) – and it obviously beats the alternative!  Chemo is currently keeping me alive.  This is another reason why I cling to any sense of normalcy I can find – even something as small as a haircut…

4th of July

4th of July Excitement

Last week had been exciting to say the least!  That Friday I awoke to find my left leg & foot swelled up like a balloon.  Later in the day, the right leg joined in.  I made an ignorant mistake that could have had fatal consequences – I didn’t realize the potential seriousness and didn’t call my oncologist immediately… In the afternoon I told my oncologist about my swelling in passing.  He told me to go to the Emergency Room immediately.  Working with my oncologist for 5 years he has never told me to go to the ER immediately for anything so I knew it must be very serious.  I jumped in Uber and went to the ER.  They searched for signs of pulmonary embolism with leg ultrasounds and chest x-rays and didn’t see any so they sent me home.  The weekend was normal except in hindsight I was experiencing clinical signs of having a PE – walking to a restaurant on Saturday night, I was out of breath – it felt like I was walking at high altitude.  I attributed it to general weakness caused by the cancer after a long busy day.  In hindsight I was wrong.

By chance occurrence, I had a CT-scan scheduled for Sunday.  It showed some great news!  It looks like the Y90-SIRT procedure I did in May has significantly reduced the amount of cancer in my liver!  The rest of my spots were stable – my FOLFIRI + Erbitux treatments are still working! Woo-hoo!

Pulmonary Embolism-300x266

Now the bad news… the higher resolution of the lung CT (compared to the ER’s chest x-ray) showed a pulmonary embolism.  A planned 30 minute doctor’s appointment unexpectedly turned into me being whisked off to the ER again…  This time including an overnight stay in the hospital.  The treatment for PE is self-injection of Lovenox (Enoxaparin sodium) twice a day for a least 6 months but probably indefinitely.  As its mechanism of action, Lovenox binds to antithrombin to form a complex that irreversibly inactivates clotting factor Xa.   Throughout my hospital stay I basically felt OK – my main concern was getting home for our 4th of July BBQ and fireworks.  They promised I could do that if I was stable overnight.

608-03473085

I was discharged about 3PM on the 4th.  Friends from the BBQ drove to the hospital to pick me up and I immediately had a cheeseburger off the grill when I walked in.  Once again there was that sense of normalcy to cling to as my memories of my hospital stay quickly faded from view.  What was the highlight of the 4th for me?  Getting out of the hospital? Nah… Being with friends? Close but not quite… My 9-year old, who really wants to be an independent teenager right now, laying down her nascent independence and putting her arm around me for the entire fireworks show.  That was the highlight.

Yet again that experience was the jumble of Stage IV life – one minute being told everything was fine… then being told no, you have a life threatening PE… then being told in ER that I will need to be hospitalized… followed by a perfectly normal 4th of July when I got home.  If your head is spinning that is fine – my head was spinning too!!

A key part of Stage IV Life is learning how to juggle these constant changes from sickness to normalcy and back again.  Like a new sailor, learning how to get your “sea legs” to handle the at times violent & sudden unexpected thrusting between the two.  But humans are remarkably versatile!  Most of us can gain our sea legs in no time at all…  In the beginning of my diagnosis, most of my time was still completely normal with the occasional thrust into cancer life on chemo days etc.  But as I have entered into later stage disease, that is reversed and most of my time is now cancer life with (fortunately) the occasional lucky glimpse of normal life.

Something as exciting as a haircut.

-Tom

 

20 Comments on “Glimpses of Normal Life

  1. I am glad that these interludes of normalacy and good news can break up the ongoing battles of tolerating the irinotecan(my most hated drug) and the other challenges of this disease. I am excited to go grocery shopping on my own or to finish a short walk in the neighborhood. My adult children get distressed with me at times because they think I paint too rosy a picture of my condition, but enjoying these simple pleasures is what gets me through and adds quality to my life. And you have done so much more with your blog and work with Fight Colerectal Cancer! I am so that you have the opportunity to be cuddled by your daughter thorughout the fireworks. And thank you for the suggestions of tne promising trial for those of us who are MSS. I am going to check out the trial at Columbia Presbyterian. May you have more normalacy and less crisis in the days ahead. Best wishes, Louise Kuklis

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  2. It’s the little things…I loved seeing our son enjoy the 4th too…whiplash is hard to take in cancer occurrences ..hang in there! Deborah

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  3. Lovenox, yea I remember not needing that any more. I always love getting rid of a medication. Such a small thing, but I happily took it until they let me stop. You’re advice about “normal” is great. Sometimes my little sister comes to visit (she recently left a stress factory, in no hurry to find another) and we just go to the store or for a drive. I wish my bride let me fly (I don’t do well with that) because she and a friend are meeting up with another college roommate and retracing their steps to the Hearst Castle, 40 years later. I’d come just to shake your hand. I’d keep our friend’s Temecula house safe (infested with 20 somethings) until they came back. I do so love to dream. More in keeping with my abilities I’m doing a lot of writing and small (as in embarrassingly so) projects around the house. It is always the highlight of my day to see a post from you.

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  4. “Normal”. My counselor could not understand why I resist household help. It took me all morning to change the bed sheets. I told her that “anything close to normal is a win”. She is not specifically a cancer counselor and actually thanked me a few months later for that perspective after she had gained 2 more cancer clients. Now that I’m not in active treatment I’m actually thinking more about accepting help. I’ve been sorting out my sewing room and hit all the American Girl sewing supplies. Sewed for my girls and my grand daughter is now past that time of life as well. Brought me to tears. Thanks for sharing Tom.💙

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  5. You put into simple words what I cannot. Thank you so much. I am looking for the new normal now that I’m stage 4 stomach cancer and it keeps changing depending on treatment. Like you those glimpses of normal are so important.

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  6. oy vay, sorry to hear about the pe
    i am also experiencing the doing fine one day and bedridden with something (unbearable abdominal pain, possibly tumor related) the next. normal is so unexpected

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  7. I do so love normal. I hope you get a LOT MORE of that in the coming weeks, months, and years!

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  8. Tom, my husband was often asked if he had a bucket list he was going to get through in the last few years of his life. People thought he should travel and see things far from home. He’d always reply that he had been living his bucket list all along. He just wanted to mow his lawn and enjoy a meal. His bucket list was his friends and family, his job, and the regular little things he always did.

    John also infected himself with Lovenox every morning. It became like brushing his teeth….,nothing to it. It must be done.

    I loved this blog post. It tells the real story of your experience. The grit and the grime, but also the love and the courage. Carry on for more sweet hugs from those daughters of yours!

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  9. Bridget, you are so right, everyone expects you to travel the world. My wife became quite happy with me fixing her breakfast even if she didn’t eat it. Just the little things mean so much more and most people just don’t get it.

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  10. FOLFIRI side effects assume. You should look at this study. It did very well for my wife with few side effects and is considered as a possible replacement for first line treatment replacing FOLFIRI. It also could help alleviate any potential damaging Phase 1/1b risky side effects, so LIFE can be ENJOYED. http://www.nejm.org/doi/full/10.1056/NEJMoa1414325

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  11. Tom- been on lovenox indefinitely too- very small thing compared to everything else, I know you’ve got this! Sorry it was scary and wishing the ED had recognized the high pretest probability and ordered the more sensitive test to start. Glad the followup films were due.

    Cheering for you from NC, as always.

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  12. I am typing to tell you how powerfully empowering your blog has been to me. I have been reading your blog for many months. I am incredibly grateful that even in your “predicament” (??), you take the time to write. The most powerful impact writing can have is to show readers: “you are not alone.” You put into words what I feel, but have yet to explicitly acknowledge or make meaning of. Your blog has helped me be a better caretaker to my father (stage IV CRC, MSS). Part of his story is here: http://www.desmoinesregister.com/story/entertainment/music/2016/08/08/willie-nelson-hinterland-dean-thomann/88391882/
    Because of your work, I have Pa on a call-back for a promising trial, I can ask critical questions of his doctors, and I feel I can at least do something known-to-be-right during the unknown. Thank you many times over.

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  13. It is so awesome to have a normal component to life, no matter what it is. I am considered “cured” but still feel like I’m getting back to a “normal” life. If there is one. Congrats on the People cover! Do you have any advice for a friend’s son age 12 with relapsed ALL – trying to find a CART T-cell program to take him – at St Judes currently. Looking for anything at this point really! Thanks,
    Robin

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      • Perhaps try the University of Pennsylvania? I am unfortunately not an expert on childhood CAR-T therapies but I know UPenn has a large program. Best of luck- Tom

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  14. Dear Tom, thanks so much for sharing your expertise and experiences. I have just bought the Newsweek special issue on cancer. Congratulations with your contribution!
    I am a Norwegian, MMS, CRC IVstage patient and well into the fifth year since I got the diagnosis.
    Patients with active metastases in the central nervous system (like myself) are not eligible in most/many trials (among others the RO6958688 +atezolizumab NCT02650713 trial). Do you have any thoughts on the reasons for this?

    Liv

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  15. Pingback: A Cancer Life Week: A Little Bit of This, a Little Bit of That | AdventuresInLivingTerminallyOptimistic

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