Quicky and somewhat unexpected update

Ok, Well, I admit. I was pretty sure that the current batch of chemo was not being all that successful. The number of seizure effects and side effects I have been having made me concerned and I was completely prepared for a change in medication.

Apparently, though, the current approach is holding down the fort.  All my tumors are either about the same size or slightly smaller.  And, as an added bonus, I got the doctor (Smith) with the much better bedside manner who was willing to just sit with me and explain as best he could where all the cancer is and what is happening with it.

Brain Scans0001
Here you can see the thick white cancerous inflammation of the Meninges at the top.
Brain Scans0002
Here you can see the improvement from the Radiation and chemo.

The improvement there was clearly pleasing my doctor.  So, I feel pretty comfortable with it.  He also promised that they would continue to be on the lookout for any Clinical Trials for which I would be suited.  That made me feel more comfortable, too.

Other interesting bits:

  • They will slightly reduce the chemo to help with some of the side effects, but since it is actually keeping things stable, they are less concerned about that than they otherwise might be.
  • There are apparently some tiny bits of cancer in my lungs, but, again, since we are keeping things stable and because they are sooo small, no one seems overly concerned.  I am not thrilled at all.  But, it isn’t something I get to pick
  • The cancer is pretty much alllll through my bones.  He thinks it is in all my vertebrae, for instance.  Which is off-putting.  But, I guess it has largely been like that from the beginning.  It is just that now it has been better explained to me.  And, all the pain is largely controlled.  And, if we believe the tests, the chemo is doing what it should be, knock huge wood (ummm maybe I could phrase that better?   Nahhhh….)
  • They will finally be giving me the bone strengthening medication on Friday- and they will schedule a non-urgent bone scan in the reasonably near future.  That test looks like it will be a bit of a doozy (several hours waiting for radiation to work its way around my body while I wait at the hospital), but the info should be really useful- or at least pertinent to my interests.
  • They are reducing my steroid dose and going to try to help get my legs recovered with some physical therapy.  This is very good because rebuilding muscle mass will make it a lot easier to get on and off cars, buses, etc.
  • They are putting me on a couple new meds to deal with some of the other side effects.  Stuff for inflammation in my mouth.  Some Imodium to help get some of the chemo symptoms under control.  Some vitamin B6 to try to help with the Plantar Palmar
  • They will be assigning me to some “regional nurses” who will decide how to deal with a nasty wound I have gotten at the …. well, at the top of my butt crack… not sure how to make that sound adorable.  But the skin has split and apparently will need some special care to help it heal.
  • Some other little tweaks I am forgetting about.
  • So, basically, there will be many changes, but they aren’t the ones I was anticipating.
  • Audric is sick…. He will probably be home tomorrow, but that sort of means I will be around a plague carrier all day….. With a compromised immune system I have to sort of avoid him.  But, he is also my kiddo, so that is hard.

As for how I am actually DOING?  Honestly, it is a rough week.  Last time I was off my chemo I had such a terrific time with Audric and I had so much energy!  This time I am really struggling.  I think between the meds and the lack of rest time this last week, I just need more recovery than last time.  But, it is a little discouraging because I had hoped I would be much more energetic and capable than I actually seem to be.  On the other hand, if you consider it as a trade off in terms of having basically enough energy to hang with Raquel and Malia and then needing this week to recover, it is a choice I would have made with my eyes open.   The issues largely come from mis-matched expectations, I think.  As many such things do.

In any case, this is fast becoming an Non-Quicky Update.

Upcoming:

All the *actual* changes.  We will see what happens.

 

 

7 comments

  1. Interesting update. Did you tell your doctor about the British Tyranny thing?

    Also, from the description of your time with Raquel and Malia, I would be resting this week too. I know you’re a bit more extroverted than I, but give yourself a break!

    Glad to hear things are working out in general though.

    Take care.

  2. I am so happy to hear the good news and things are working out! Rest up, my friend~~ Tomorrow will be even better than today! 🙂

  3. Glad to get a somewhat positive report … way better than the alternative. Talked to your mother a day or two ago and she thought this report might be less than positive. They must be using the correct meds right now. Connie had a recent experience with using the ‘correct’ meds. She’s had this raging skin condition for a couple of years now and three separate doctors gave her three different medications – and the condition got worst and none of the doctors could say anything except that it must be connected to her liver cancer. Well one of them sent her to a dermitalogist who took some new cultures and came up with a perscription that he proudly said would make him Connie’s new favorite person – he was correct. What an amazing difference! I hope you can find your doctor who will become ‘your’ favorite person.
    Love You! Dad

    1. Yes, I Was realy surprised when the report came back that the chemo,was working. My Other doc had indicated that all the brain issues likely meant things weren’t where we wanted. But, turns out that most of those seem related to the medication and not the cancer itself, knock wood. I am really glad Connie got some relief! I am hoping for some similar results, knock more wood…. When do you think we Can try to skype or phone call? I know your system is all mucked up, but clearly you can read this!
      Right now my biggest medicsl challenges are getting the weight loss under control and regaining my strength. So, that is my focus.. Apparently i lost over 6 pounds this fortnight, and over 16 the month before…. How thwt is possible with the uptick in my comsumption boggles me. But working to get it under comtrol.”..
      Love you!.

  4. I am at a loss for words at how focused, string and optimistic you remain despite all of this on going “crap” for lack of a better word. It just doesn’t seem fair, again for lack of a better descriptive term, but bloody hell! We are too young to have to cope with all this on top of the regular stresses of daily life. Between work, kids, the house, pets, family and everything else life throws at us, to take this on as well just seems staggering. I am in awe at your strength, resilience and calm resolve. You describe your current condition and care with such clarity and upbeat humor it’s hard to believe this is happening to you and not someone you know and are writing the updates for them. You inspire me and hopefully others as well. Your family must be going through an emotional roller coaster right now but despite it all, you are their cheerleader! I have been coping with a back issue for five years now myself which came about suddenly and without warning one night as my disc at L5-S1 decided to rupture (pop) at 3 am on 12/08/2009. I stretched my legs while in bed and “pop” went the disc-o. Since that night I’ve had 5 epidural procedures, one micro-discectomy and one spinal stimulator trial (which was not successful) to try and get the pain under control. So far nothing has worked. I’m seeing a new neurologist today to try and get some relief and perhaps review surgical options. But this pales in comparison to even one 100th of what you are coping with and doing so with a smile and grace under pressure. Thank you for sharing and keep up the fight. Your strength, humor and positive outlook are inspiring and I wish you all the energy and strength you need to carry on to run this unexpected marathon and WIN! I am in awe of your resolve and strength. Thank you for sharing your story and stay strong. You are loved and fortunate to be able to love as well. For without love, there is no life.

    1. Wow, thank you Phil… Thatbis one of the kindest things anyone has said to me. I really really hope your back feels much better soon. One of my closest friends just had to have two surgeries placing in these little titanium spring clips to keep her vertebrea in the right positions snd support them…. Horrible surgeries, but the results are becoming more wnd more positive…. I hope there is an approach thwt will be equally positive for you!

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