You Don’t Know How Much You Miss Something Until…

You don’t know how much you will miss something until it is taken away from you.  Two weeks ago something was taken away from me: my ability to walk without assistance.

It all happened without warning.  I was watching TV with the family on a Saturday, preparing for the next 3 zaps of ration treatment. I had so far had two. On Monday I was supposed to start the final three and I got up to walk to the refrigerator to get something to drink.

Then something completely unexpected happened.

I walked forward about a few feet and unexpectedly, I lost all sense of balance and fell forward into our (unlit) fireplace.  I landed hard on my face, arms and legs – gave myself a good scare I did – but not as good a scare as I realized.  I crawled myself up and returned to my recliner chair.  I realized that this was the second time in the past few days I had lost all sense of balance but those first times I had thankfully caught myself fully and did not fall.

Thinking back, my loss of balance of been growing but each time I had been able to catch myself… make excuses… of course the midnight frozen pizza hit across the hallway wall was a bit harder to excuse but I found a way – the hallway was dark wasn’t it?

pizza comes with handle

A few hours later, my “growing scabs” were still not growing.  It was a side effect of the Avastin I was on.  A mental picture entered my head from my oncologist: IF YOU EVER HIT YOUR HEAD HARD WHILE ON AVASTIN, GO TO THE EMERGENCY ROOM.  I texted a good friend of mine, similar age, also with Stage IV CRC and told her: I think I need to go.  I no longer think I can walk. Along with the deterioration of my scab making ability there had been a steady deterioration in my walking ability/balance.  We knew there was something wrong.

We drove together to the emergency room like two peas in a pod – I was never so glad to have an early onset CRC friend close by!

We got to the emergency room, told them my history and symptoms and they shuttled me away.  CT-scans showed no new causes for concern beyond swelling of my brain due to the radiation growing into the area of the brain affecting my balance.  This is a known problem to occur due to radiation to the brain.  Even though it was not definitive proof, it was circumstantial proof that the radiation was causing my lack of balance.  Hopefully once the radiation swelling went away, my balance would return! Loss of balance is a symptom of brain tumors but it can be exacerbated by radiotherapy treatment.  I mentally crossed my fingers, a temporary problem!!

ER Room Stud

Coming Home

Coming home the next morning after the night of observation was rough.  To get it through the day (literally) we had to set up 24 hour home health care.  I’ll spare you the details but if you count, there is actually an insane number of times you get up in a 24 hour period for various reasons!  Adding to that, not getting up started to quickly impact the muscle weakness of my leg and arm muscles…..not fun. On the good side, other symptoms of brain tumors were starting to get better – like the ever so popular spontaneous vomiting!  Now that is a party killer if there ever was one! haha.

Overall, it has been a horrible week.  Having a week of being helped like a baby.  A week of losing all independence.  A week that I never saw coming just a week ago.  It is amazing how quickly things can change in the Stage IV cancer world.  Things were actually getting better until I fell again next to the toilet a few days ago.  Restart the clock.

So… if I have been very quiet the past week, that is where I have been.  Being helped like a rag doll.  A situation I never in a middle of a thousand years ever thought I would find myself in.  But a situation I found myself in.  Keep in mind, it may just happen to you too… but like me, you can find resolve in the HOPE that the situation is only temporary and that the ship will quickly right itself where it needs to be.  As of all data two weeks ago, I assure you, I do not think this is where my ship is supposed to be right now 🙂  Wish me all the vibes and prayers I am right!  If I am not correct, I will deal with the new situation as I have always tried to – get back on that horse with grace, humility and the feeling of “this was just meant to be”.

BTW Aside from the small things of having no sense of balance and an inability to walk more than a few feet, I feel fine 🙂

To Life!


42 Comments on “You Don’t Know How Much You Miss Something Until…

  1. Tom, thank you so very much for sharing your journey with so many. Prayers for your continued strength and know you are in the thoughts and prayers of so many…those fighting this debilitating disease and those who are care givers and loving family and friends in emotional pain but trying to stay positive. You are an inspiration to so many and have not only educated us on the clinical side of things but also the human aspect of love, caring and nurturing. Know you are loved and appreciated.

    My younger sister is Dr. Anne Dean (Camelli) former ER Trauma Physician in the Washington, DC area diagnosed with stage 4 colon cancer before 50 years of age and still fighting through her 6th year. Now on dialysis and still keeps a positive attitude. You’ve been an inspiration to us all.

    Elle St. Clair
    Miami, FL


  2. So many prayers are being sent your way. You are a hero to all of us facing this disease.


  3. Vaya con Dios, Tom. Faith (something you are redolent of, no matter the “beliefs” you may profess) fills a person with a hope which goes far beyond the normal idea of the good we expect will come it should have another name. It’s more of an unshakable certainty that life is good, and that all you do is a furtherance of that good through which you’re enabled to greet each day filled with more joy some never even know. Through these you generatively espouse a love that touches people you will never even get a chance to meet, filling us with a hope we didn’t have before knowing you; these things you have given without measure, given without counting the costs; it’s so evident in you I feel I as if I’ve always known you and I’m certainly better for knowing you. None of us know what tomorrow brings, but living as you do it’s certain what comes will always be good. You aren’t courageous but simply so optimistic that nothing can touch you. Whatever comes next, you roll with it showing a simple grace that inspires me. We should all live this way. Your family is blessed. I feel blessed to know you, my unknown friend. Life isn’t defined by our ideas of space or time; it’s defined by the way we love. You are a true lover, making you as alive as anyone I’ve ever known.


  4. Ohhhh my goodness. I didn’t know it was that bad! I’m so sorry, Tom. Praying that the lack of balance is a temporary side effect and that you’ll get some independence back soon! Thank you for keeping us in the loop. Sending love and prayers, always!


  5. Sending loads of wishes for this radiation-induced edema to reverse soon, so you are free from all these symptoms and continue your path! Step after step, on step each time.

    Liked by 1 person

  6. Thoughts and prayers. There is a plan for you. Hold on to hope as we hold on to you. The lord has his plans for you and you are doing amazing work; God bless you and stay steady ( no pun intended)


  7. You have been a gift to so many that follow your posts, Tom. Sending you love and strength from Miami, Florida.


  8. Love you so much Tom. Time to rest and heal from the fall. It’s perfectly ok to lean on others sometimes, as it means getting back your independence. It is always wonderful to hear your voice and about your life. Even professors and scientists need a little respite. Keep on keeping on magnificent gentleman…💙


  9. Sending positive vibes and prayers all the way from Cape Town. You blow me away each and every time I read your blog about your strength of character, authenticity and pure awesomeness…

    Liked by 1 person

  10. Sending all the love in the world and keeping everything crossed for things to improve in the very near future.


  11. I am so sorry you are going through this. My thoughts are with you and your family. 24 hour nursing is a blessing and a curse because the family yields so much personal space. Sending love and strength.


  12. Tom I was on oxiplantin for 8 mo developed neuropathy in feet hands and legs. Wow fell 3 times dr took me off it but it takes 6 mo for nerves to regenerate. I’m a gal who walked 4 mi a day for yrs yes life can change in a minute. Now I walk with a walker hard for me to accept. Have avoided avastin due to scary side effects I”m 70. What was that alternative drug you took instead of avastin? Need to know by thurs doc appointment.


  13. Tom, I am so sorry, Im glad you have help.I have basically been in the same boat two weeks ahead of ya. Home health aides. . Wasn’t clued in to expect this, but now it’s happeningits comforting reading up on it and seeing it’s not an unexpected side effect of the radiation and will pass. Im two weeks out and think I would be better except have done a fairly rapid taper off decadron to get back to immunotherapy. I may have to slow that down a touch. I am so thankful the swelling has subsided and I have full use of my left side and cognitive function has returned. So glad other than dizziness and weak legs you are doing ok as well. Hope your light on that is just around the corner. Big hugs Jane

    Liked by 1 person

    • I forgot to say other than that I feel fine? LOL. You can do a cancer comedy show when you recover and the immunotherapy has kicked this stuff out for good . The immunotherapy therapy working and swelling up those tumors is why I’m guessing the they became symptomatic to begin with. Swelling from the clobbering. Bam ker bam. Keep it going. That swelling will go away. Yucky til it does so sorry. More hugs and love your way Tom. Jane


  14. You continue to inform, inspire and motivate this stage 4 survivor by sharing openly & honestly each step of your journey! Praying you overcome these hurdles and are able to see the return to a stronger you!


  15. I have found that my writing has changed as my health concerns grew. Now I use alot of compound and complex sentences such as: “although this has happened, I can still do this other thing” or “I was so happy to be able to go here but unfortunately I will not be able to participate there”. It is a continual balancing act of the joys versus the unwanteds. I wish for you that you can still have more joys than the debilitating stuff. You have done so much for all of us, laying out a navigational breadcrumb trail of insights and knowledge to help us all get through the ups and downs of this disease. May you find a new balance in your life for the better!

    Liked by 2 people

  16. Tom,
    You are in my prayers. Sending positive thoughts that your treatment will work!
    To Life,


  17. All my heart is with you, brother (I am a 4b cervical cancer patient)… Please keep your sense of humour and I wish you serenity.


  18. I wrote this in response to an email I responded/replied to this morning. In general, I don’t respond to private messages now days but this one was so heartfelt in response to my blog entry, I couldn’t resist. It explained some of the thought process behind why I wrote such a “dark” blog entry this time. I wanted to share it with you. For confidentiality, I only wrote my response, not her original (long) email sent to me:

    “Thank you for writing such a heartfelt & deep writing. I can tell it was not any easy thing for you to do this writing.

    Rest assured that I put a lot of thought into all of my blog writings and I work hard to get as much out of them as I give to others. In this case, talking about the pain & the loss of self-control was cathartic and in that way actually made me feel better – as well as showing this side of cancer which is seldom discussed outside of the “Oh whoa is me, feel sorry for me…” context which I think is overdone & actually defeats the purpose…

    I actually do feel like the next post will be a positive one. This one was supposed to be that one but then real life intervened and I ended up falling down at the toilet resetting the clock for recuperation… C’Est La Vie….

    Happy Halloween — Life in all its wonder continue on!

    PS I will not be able to trick or trick tonight but I plan on giving out candy at home tonight dressed up as Dumbledorf in costume/wheelchair!”


  19. Tom- Prayers for you every day. Thankful CT scans look good. This will pass and you will be back on your feet. When I was stuck in bed following surgery, exercise bands kept me going. Anything to keep those muscles working!


  20. Hi Tom,hope you are well. I am from China and read all your latest 10 posts in this week.My father had stage IV CRC,he have Erbitux infusion from 30/11/2016 to 06/02/2017 within 5 cycles.His tumor index did not go down after 5 cycles so he stop it.But as you said, things changed so quickly in stage IV cancer, he could not climb 3 floor stairs otherwise he feel breath so badly just 2 months later after Erbitux.

    I am wondering if these are serious side effect after taking Erbitux, that is too toxic to walking independently.

    In August,he have to take oxygen for helping breathing or he feel alomost can not breath.Now he hardly breath smoothly even go to toilet for washing from bed.He had lay in hopital bed for alomost 2 months.

    I learn PD-1 medical method from your post,also I see you use Atezo/FOLFIRI/Avastin with some painful side effect, how things going now ?will you continue use it?my father also use Folfiri treatment from Apr/2016 to Aug 2016 but found tumor transfering to lung.

    I haven’t check my father if he is MSS orMSI ,I am worried side effect and worried if this medicine will kill more immune cell instead killing tumor cell.
    After all my father is too weak now, have to breath oxygen, can not walk 20 meters without oxygen.I am worried if he have enough power to support this immune treatment.
    wish to get your response and hope you are good every day. Thanks Eddie


  21. Tom,
    You are an amazing, inspirational warrior. I too, am a stage 4crc warrior and I know every decision we make in the course of our journey’s is torturous because of the unknown side effects. Sometimes of which are more difficult than just our cancers.
    As your cancer advances, I admire so much your will to keep fighting at all costs. I am so torn as mine has advanced, as I am now faced with doing radiation (again) to my Mediastinum at the cost of even more eating difficulty. It is heartbreaking to balance quality vs quantity of life. I am in awe of you as you do this with such humor and grace. Thank you for being such a great role model. Deep love though we have never met, I feel as tho we have. Sending positive vibes and love your way!


  22. Hi, Tom

    I am still happy to know the lattest on you whatever it is: good news or unexpected ones.
    You were really lucky to have a close CRC friend to be with you when it happened.

    It took me two days to leave a reply to your post. I had to think about it. Let me say Tom, that this post is one of your best one because you have said in personal and appropriate words and tone what happened to you.

    So, thank you for sharing with us those moments of your daily life.

    Save energy and write soon.



  23. All the very, very best to you Tom, you are most definitely in my prayers and I’m adding to the mammoth amount go good vibes being sent your way, with all your positive energy and humor it is bound to make a difference! Hoping you are back on your feet really soon. You are a star!


  24. Tom how are you? It’s been a while since your last post and I do check in from time to time to see how you are. I understand blogging comes waaaay down the list of priorities and updating total strangers further down still but know there are people out here you don’t even know rooting for you! X


  25. Dear Tom,

    It’s Christmas time and you left us very recently. I found no other ways to write to you so I decided to left a second reply to your last post.
    I’m no relative to you but I felt deeply moved by your story.
    I tried to walk by your side for few months since august.

    You are a really nice and valuable person and we will miss you. Sometimes you were very puzzling to me. I mean it was difficult to understand your profound true self. I could’nt. So I tried to get nearer to what you intended to express. And I became conscious of you message of hope. I tried to respect your intimacy too.

    Tonight, my thoughts are dedicated to you and to your family. I hope your wife, daughters, friends and relatives will be strong enough to go on. I’m sure they are, especially the young ones which are rich of opportunities and discoveries. I wish the best for all of you.



  26. Am I the only one who wishes we could do something in Tom’s memory? He gave us all so much Hope and we shouldn’t lose that or deny ourselves of it with the loss of this wonderful man who instilled so much Hope into our lives. God bless you Tom and your family. Thank you so much for the inspiration, the Hope that one day cancer will be a disease like diabetes or a long-term cold where it can be treated and managed. You gave the cancer fighting world the Hope we all need to cling to. For that I will treasure your inspiration for the rest of my life. I know you inspired my husband Jim who also passed this year from his colon cancer journey. I know you two are free of this disease and free of the pain and suffering. You’re looking down from Heaven and seeing how much you were loved by those you touched. Enjoy the ride of your new lives!


  27. I lost my dear wife recently to stage IV CRC with her in my hands and looking into each others eyes with her pain and suffering. Tom, inspired me to continue my awareness and investigations into clinical trials, med journals and associated papers. I know research is so close to solving this. Tom set the highest standard for communication in passing research direction along with his personal message. I will always remember Tom and his message and it will continue to keep all of us hopeful that the pain and suffering can be conquered.


    • Saw on Tom’s blog you lost your wife so sorry. I started my battle last feb 8 mo of chemo folfox for colon spread to liver. They are shrinking but got neuropathy in feet and hands and now have to walk with a walker. Did Tom pass? I saw this from another person but not notice from his family? My sympathy and prayers for healing with you and Toms family. He was such a fighter and wealth of information for us all. Great guy. Sincerely Marianne


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