Go confidently in the direction of your dreams. Live the life you have imagined.

Henry David Thoreau

Wish we could just skip this week

Tuesday May 8-Friday May 11, 2011
Lithia Springs Park Site 40, Lithia, Florida


Yesterday On Monday,

after meeting Magi,  we spend 5 hours at the Moffitt Cancer Center for one appointment with one doctor.  This is the beginning of multiple days of difficulty. 

I’ve gotten behind on the blog not wanting to post these days.  Separately I  keep a hand written journal and haven’t posted any of this because it’s pretty bleak.  But it’s hard to be cheery all the time in a blog when your life isn’t all that cheery.   And this is my life.  So be warned before you go further.  But know too how much your comments help to give me something to look forward to.  The cheery posts are the previous 3 in case you missed them.  


Tuesday morning I do yoga out by the river.


Site 40 Lithia Springs 007

Great setting, too much of a slope.
I’ll have to find a different place for Thursday.  Here’s today’s spot.
No decent pictures but you know what yoga looks like anyway.





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David’s back is still bothering him.  This has been his worst “vacation week” since he started treatment.  He has had no let up from the fatigue or the back pain.  Vacation is over so he starts back on all the drugs today not having had the “rest” he has usually gotten.  He has not been able, for at least a few days, to pretend that his life is normal and so is he.



We spend Tuesday afternoon at another Doctor’s office.


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I drive David to the Florida Cancer Specialists in Brandon for the shots and to talk his other Myeloma Doctor, Dr. David Wright.  In a serious situation like this it is mandatory, in my mind, that you have at least two opinions about what’s happening and what to do. 



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He checks in, we wait, they call him and he again gives them the vials of blood that will show what his various numbers are according to their lab.  Then we wait for the discussion with Wright about what now.  Then we wait for the drug to be administered.  Thank goodness for blog comments I can read on my cell phone to give me something to smile about and take my mind off of the endless waiting.


Apparently Dr. Shain called Doctor Wright and they are in agreement that there must be another series of treatments.  I’m not so sure this is Wright’s independent opinion.  I don’t like this business of them getting together before hand to decide.  I wanted two doctors so I could have two separate professional opinions, not a group opinion.  No reason to pay them both of that’s going to be the way of things.  Because he’s been having leg pains, they decide to cut the Velcade dosage by 25%.  I guess that’s something.  Hope that helps decrease its side effects.  Otherwise he’s still taking all the other drugs at their same levels.



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The treatment starts.  David gets the first velcade shot of series #5.  This will increase his  fatigue.  He takes the steroid dexamethazone on “velcade days”  since it also attacks myeloma cells and is supposed to mitigate some of the side effects of velcade like the back pain and the  fatigue.  But the Dex gives him insomnia.  Result, still no uninterrupted sleep.

This takes the entire afternoon.

He sleeps only marginally better.



Wednesday morning early I’m out running. 


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David works on gathering all the details and information to decide about and set up the Stem Cell Transplant that is Moffitt’s next treatment step once they get him as far into remission as they can. OR as I suspect as soon as he has under gone the 6 sets of treatment that their protocol in research is set at. 


Getting information from individuals at any medical facility is not an easy thing to do since getting in touch with any medical personnel without having an “appointment” is nearly impossible.   He leaves messages with the doctors’ nurses, with the social worker, with the assistant, with the transplant liaison.  He has questions.  He needs information.  No one is available and no one calls him back.  Some voice mailboxes are full.  He sends emails.   We later find some folks are on vacation.  Isn’t it usually polite to indicate that in your phone mail message and have an “out of office” email response??? 


Site 40 Lithia Springs 013


He has finished reading the frightening Bone Marrow Transplant Guide and it’s clear that this is an agonizing step for him and a tremendous amount of work for me.  We need a lot more information from people who have been there and done that relatively recently and from those who can help us find some sort of housing for this 9 weeks as it seems it will not be possible to stay in Winnona.   Increasing $$$ signs fill my mind.



Yesterday’s Dex did lessen the back pain but it is now returning.  The dex created insomnia is not gone.  The worst of both worlds.



Feeling pretty crummy on Thursday.


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David’s still not sleeping and is exhausted and napping during the day as best he can with the back pain.  He moves from one location to another.  On the floor,  in the lounger inside, outside in the antigravity chair.  He has an appointment at the Neurosurgery clinic next Tuesday to get a directed steroid shot into this area of his back.  That is 4 days away and the last hope for pain relief as none of the pain medications prescribed by any of his now 3 doctors has worked.  This is obviously exacerbated by his weight and muscle loss.  He is down now 20 pounds.  No matter how much he eats or of what, he continues to lose weight at a pound every day or two.  I wonder if he will be physically able to do a transplant.


I spend much of the day down by the river so that I make no noise and won’t wake him.  I’m reading and journaling.  I’m feeling crummy too.  I look at life and wonder what is it all about?  What is the point?  To have fun?  To make some “contribution” whatever that means?   To bring others to your beliefs?  To make great discoveries? To get to heaven? To make “enough” money?


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Most people spend their lives going to work 8+ hours 5 days a week, and when they aren’t “working” they are  doing their house/yard work, taking care of their children, and “relaxing” with TV or shopping or golf or puttering to try to recharge for the repeat.   Some are able to take a week or two “vacation” each year to somewhere else and try harder to have a good time.

We got out of the rat race for what seems like an instant and now we have a terminal illness to fight.  I’m tired.  He’s tired.  It’s very unfair.

My mood is pretty black.  I try not to be another drain on David’s energy.   I check the blog’s comments.   Seeing them there is like a life line to normality.


Friday is another Dex Day.  David has more energy.


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I get up early and go running perhaps it will keep the blues at bay.

David is able to drive himself to Brandon for his second Velcade shot and takes his 2nd Dex of the week.  It’s a Dex Day as we have come to call it, when he has more energy and is very chatty.

To those of you who have made it all the way through this rather bleak post, I apologize.  Probably should have left this unwritten or at least un posted.  But it’s my life now.  Many of our days used to be at least partially diamonds, but too many days now are stones. 

Today is a Dex Day and that’s at least somewhat better.  Tuesday is only 3 days away.  Seems terrible to wish your days away, to want them to pass more quickly.  Maybe I’ll go to up to Sweetbay’s Red Box and rent Joyful Noise and see if Queen Latifah and Dolly Parton can light up the place.


I’ll go later, David’s managed to fall asleep in his chair under the awning.  Don’t want to disturb him with the camera or the car so imagine him in the chair by the door.  I can go when he wakes up.


Sat & Sun 010


  1. To be a diamond, a stone must undergo much, very much pressure. Please know that John and I will pray for you two!

    1. I just read this to John and we are really feeling crummy for you. Thank you for sharing your feelings with us. At least John was "sleeping" through his experience. I understand your feelings. Consider yourself hugged.

  2. Keep writing... keep posting. As you are experiencing life isn't always the way we would like. I have been the my families resident care giver and have be present for many difficult moments. Let us hold you up for a while....

  3. Blogging or journaling are probably helping you, so don't feel you need to apologize. Yes, it is difficult to understand WHY? My thought and prayers are with both of you.

  4. How I wish I were there and could help! Please let me know if there is anything I can do.

  5. Sherry...I wish I could help somehow besides these paltry words. Know that you are in our thoughts and prayers. I am so totally grateful to have the life I have now, being that the life you described was what we had for years and years. Folks like you and David have helped confirmed we did the right thing in making this leap. I truly truly hope to see you out here on the road as soon as possible.

  6. the 5th picture from the bottom of your blog, of a tree, looks to me like a person squatting by the water with their arms in the air !!! :)
    Showed Bri & Carl, Magi, Carl came right up to the screen & sniffed. it was pretty funny!!!
    Wish i could impart some wisdom, something to make u feel better, to make David feel better. Just know if wishes could, i would make it better for you both.
    Take Care & God Bless

  7. I have you both on my nightly prayer list. You must know you are upheld by many people, some you don't even know. You need to vent and your blog is a great way to do it, don't worry about that.

    Leanne (Laurie & George's Mom)

  8. Please don't quit writing, it may not make things better but it lets us know the pain YOU are going through too. I am a fixer and I want to fix the two of you but we both know I cant. But what I DO know is I can go to the Fixer and ask Him to give you peace and comfort as you walk through this valley. so please add me to the list of those praying for you.

  9. Perhaps sharing the burden will lighten the load a bit. Our thoughts are with you both:o))

  10. No one can imagine what you both are going through. Sharing what is going on hopefully helps somewhat. Please know that we are all sharing your journey, with love and prayers.

  11. It's important to share, Sherry. That helps you cope. Friends and family support thru this difficult time is of the utmost importance. The more people who know what's going on, the more prayers can be said for you and David. Keep talkin', girl! We're here, listening and praying for you two.

  12. Sherry and David - We can question the "whys" of life but may never have the answers. I wish I was there to give you both hugs but instead....will send them virtually. ;-)
    You both are in my thoughts and prayers. Keep on "keeping on"!

  13. It is absolutely not fair. Please continue to share via the blog. Our thoughts are with you both.

  14. Oh Sherry. How I wish your blogs were full of fun things and interesting places you are visiting. Unfortunately, this is your life right now and you don't need to feel bad for posting negative things. It's probably therapeutic for you, but it's also good documentation for Davids medical history. Keep blogging, we'll keep reading and praying for you both.

    How about staying at one of the many snowbird rv parks while David goes through the stem cell transplant. Many of them have the small park models for rent and I would think they would be priced reasonably. Or maybe the hospital/cancer center can come up with some suggestions.

  15. Sherry, I share everyone's feelings--exasperating not to be able to help, physically. Emotionally, I am here for you and it's okay if you scream, rant, rave, and cry or whatever you need to do. I always hated when people have told me not to be sad when my life was turned upside down, yet I can't imagine the panic and frustration that you must be feeling. Now, is NOT the time to stop blogging. There are some of us who at least know a tiny bit of what you and David are going through. Sometimes, as difficult as it is on the patient, watching the person you love suffer is just as difficult; maybe more. I have come to know that I'm fortunate that I didn't have to suffer that pain.

    We are here (and I'm sure I can speak for your other followers) for you. We are here as a sounding board, and to reach out however we can--even if just through inadequate words. I have watched you glean every good moment out of bad days that would have put me under. You continue to be an inspiration, but that's not your job. I feel as though you are my friend, and hope that you will call on me (and others) through your journaling. When you are really down, think of all the people in "blog land" that are holding the vigil with you, touching you and David to offer virtual comfort. Much love sent your way. You are two very courageous people, but that doesn't mean that during bleak days you can't reach back--hopefully you'll gain some strength just knowing we are here.

  16. Sherri it is my hope you will continue the blogging during this time as I think it offers a lifeline. I know looking back during our moments of touch and go, the comments helped to minimize the foggy days and bleak moments. Although I don't know the locations of your treatments, you might want to check out a website..boondockerswelcome.com. Hopefully you could work something out with a registered member.

    God Bless you and David

  17. Actually, I appreciate your putting into words the frustration of it all, the pain, the fear. I feel these feelings for David, and for you, also. Life is not always pretty... and those who paint it so are just not telling it "like it is." What David (and you) are challenged with now is one of the ultimate life challenges. I know you are both strong - in mind and body, and I am hopeful this will get you through. Of course, all of us who love you are praying for healing for David, and for strength to deal with this. Thank you for venting... we must do that.. it is a purging for the spirit, and a necessity. Sometimes we just have to throw ourselves down, and cry, and then get back up and fight harder. Hugs to both...

  18. Sherry - NO apology is needed for you are writing from the heart! You have many friends walking beside you (in spirit) during these dark days. I am with BJ and will continue to pray to the Fixer, for comfort during this difficult time.

    As I have mentioned before, another friend of ours was diagnosed with MM shortly before David was. He has already had the stem cell transplant, after leaving the hospital and a local hotel nearby for a short time, they went to stay with family for a month. (They have 4 young kids, and couldn't go directly home.) You are not alone, and it is amazing what advances have been made in medicine. (despite the side effects) Is there an online support group that David could participate in? Many diseases have that available.... Just a thought....

    Hang in there, and I agree with several other folks - this blogging is probably therapeutic for you, so keep 'em coming! Hugs! (and prayers!)

  19. Wish I had the ability to make things all better for the two of you. I admire your strength and fortitude in this time of trouble.

  20. Writing your feelings helps you put them all into words and share them, and you're allowing others to send good vibes, prayers, and love to you and David.

  21. Sherry -- You're repeating what I've heard before from another friend whose sister has this same disease. I'm so sorry that y'all are going through this, but I have hope since my friend's sister has done so well. There's light at the end of this tunnel and I'm sending all my prayers and good wishes your way. Sorry that I am not there to give you both a hug, but please consider this to be a big email hug. Hang in there. Love you both!

  22. What a wonderful blog and what wonderful comments. Please do keep writing. Keeping it honest is good for you and all of us who love and care about both of you. I know you are struggling and that this is the most difficult time of your lives. Know that you are loved and that all the people who follow your blog are sending you virtual hugs and support. It's not much, but it's about all we can do right now. I wish I could bring you food, flowers and keep you company. You will get through this, you will get to travel again and celebrate life.

  23. Count us in with so many others that are frustrated with you, crying with you, and praying for you. I agree that you should continue blogging during the bleak times -- without apology -- as it will allow you to vent and allow us to reach out with whatever words of encouragement and comfort we can. One of my favorite poems is Footprints in the Sand, and I draw comfort from the words ". . . During your times of trial and suffering when you see only one set of footprints, it was then that I carried you." Know that you and David are being carried now. Sending you both love and hugs.

  24. Sherry, keep up with your posts about what is going on. We know something like this could happen to any one of us at any time, that's why we try to have fun and enjoy each day. It's interesting to hear how you are coping, although it must be difficult. Hope there is some light at the end of the tunnel soon.

  25. Like so many others, I wish I could offer more than words of encouragement. But that is all that I have ... sincere words of encouragement. Writing about your trials and tribulations is a means of sharing the burden, so keep the words coming at your pace, knowing that there are friends in this virtual blog world to read them.

  26. You are so good with words when you post a blog about a beautiful day at the beach. You are also good with words when it's time to share the bleak moments in life. There is much love and support for you and David out there in blog land. Know that we offer our love and support too.
    Syl and Gin

  27. Sherry, the cancer may be different but I've been there and done that. I know the journey you are on and it's not an easy on. At times it's harder on the caregiver who at times has to assume both roles as well as being the supporter/cheerleader/advocate. I highly recommend this book from Amazon: Love is a Journey: Couples Facing Cancer

    Ask Moffitt about alternate housing, maybe a Ronald McDonald house? Make an appointment with their social worker/patient advocate office. Don't be afraid to ask for help, there are many programs out there and these offices can help you through the maze.

    As to blogging, I blogged my husband's entire journey, it was the only way to keep everyone in the loop. Keep it up!!

  28. As I read this and tears roll down my cheeks I have to say it's very hard knowing it's my little brother who's dealing with all this pain. I know it's not easy for you either but we all need to know what it's really like and the only other way is to be there all the time (which is not possible) So thank you for sharing your thoughts, your questions about life (ones I struggle with too) and the unfairness of it all. Unfortunately, life is unfair. I can only imagine how frustrating it is to deal with the medical practitioners who seem at times devoid of any appreciation of the additional pain caused by their propensity to make everyone wait for hours for treatment or to talk with them. I will continue to pray that David's treatment is sucessful and you both can return to some nomal state. Please keep the b;ogs coming - both good and not so good.

    With Love

  29. I don't comment often but I do think of you both often. I hate that you're both having to go through this hard time, and I hope the treatments are wildly successful so that you can resume the life you want soon. I'll keep sending good thoughts your way.

  30. I, like Roger, cried reading this blog and these supportive comments. I am in an odd place - being your daughter and at the same time being physically far away from the day to day experience. This situation is so sad and seems so incredibly and inexplicably unfair. I wish ardently that somehow I could just make it go away. I think everyone who reads this blog appreciates that you don't sugar coat it all. You should certainly keep writing the good and the bad and let your 'virtual' friends continue to lend support. Sending my love all day, everyday, feeling thankful that you are standing by Papa through all this and hoping positive change will come soon and pull us through!

  31. Never, never, never leave these posts unwritten, Sherry. Reading blogs is for many reasons: light hearted entertainment? sometimes. mindless filling up of empty space, much like dummied down TV? sometimes. Other times it can be about connecting to people, to life experience, to something that is real. Not often. Your blog is now about so much more than just a "blog" Sherry. It teaches. It opens up something we might not see in the same way without it. In the midst of life altering difficulties, you bring in birds and water and your beautiful daughter and your wonderful husband and your wonderful self. Thank you.

  32. Sometimes I think this is harder for the caregiver. They don't have any disease but they suffer all the insults to a free, healthy life as if they did. Talk about unfair. Worse too, they can't complain since they don't have the disease.

    I'm really glad you wrote this post as it speaks to that unspoken reality.


  33. I should never have let my schedule keep me from my reading my favorite blogs :( So I've missed so much. I'm glad you're being honest and sharing what's going on, cause your faraway friends wish so much we could do SOMETHING. It reminds me of how I can get so caught up in my own minor "traumas" (but, hey, when they're the biggest thing I'm dealing with at the moment then they are the biggest thing I'm dealing with at the moment, you know?)

    We sure need each other, don't we?

    Hang in there, know that you are remembered and loved, and that if we can do anything anything, please let us know.

  34. We definitely need each other and you are totally correct that whatever is the biggest thing we are each dealing with is our trauma. Some of my traumas look bigger than others especially from this viewpoint. You are doing something by commenting here and giving me the "news of the hood". All things I VERY much look forward to.


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