The Colon Club

I have an appointment with my onc on Monday, which is when I suppose I'll get the results.

Ataxia has gotten worse the past few days - I really shouldn't have driven myself to the scan, but I didn't realize HOW bad it was until it was time to leave. No time to call for a ride.
I put a call into the neurosurgeon - I'm so scared the damn tumor is already back, since these are the same symptoms I was having back in March & early May.

I DO NOT want to end up in the hospital again, buy I also can't live like this - dizzy/unbalanced when walking, etc.
Today marks two weeks since I completed whole brain radiation, and I've read that symptoms during this time can mimic those of the tumor, but every time I'm hopeful or optimistic about what's going on in my body, I'm wrong. I'm so scared - is this the end?

Sorry - I try to be upbeat, but I'm scared. Scared and sad.

AnnClare,

I am so sorry to hear what you are going through. I have no experience with this and pray I never will. It sounds so scary. I hope you have loved ones around to support you during this difficult time.

Sending prayers your way.

Neurosurgeon's office just called to set up an office appointment for Friday morning. I'm relieved they didn't want me to go to the ER today, but of course, that doesn't take away my unsteadiness when moving.

Tomorrow I'm going to call my onc's office to see about PET results. If nothing of concern showed up there, I'll probably cancel neuro appt. on Friday.

(((AnnClare)))

You have every right to be scared, butt it still could be the radiation doing it's thing. 2 weeks is not that far out, especially when dealing with radiation. I'm going to take it as a good sign that your neurosurgeon does not want you back at the hospital. Get the results of your PET scan as soon as you can.

Until you know for sure one way or the other, try not to dwell on the worst situation.

You are in my thoughts and prayers,

Lee

AnnClare:
You have a legitimate right to be scared and sad and a whatever other emotions float into your consciousness.

There is no "How To" manual to guide those of us afflicted with life-affecting illness. No step-by-step guide on how to manage the psychological challenges of living with compromised health. How to face the day when your body is complaining bitterly.

The point being: Be yourself. Without any false pretense. We do not expect you to make a smile and be upbeat if the situation is other.

A suggestion to tackle the ataxia or at least to minimize its interference. Place 1/2 pound or 1 pound cuff weights on the affected extremities at the wrist or ankle. The exogenous weight will dampen the erratic movements and placing difficulties. Use of a front wheeled walker (or preferable a 4 wheeled model) can also be helpful in normalizing walking with ataxia. The weight bearing through the arms/hands has the effect of calming the motor overflow and extraneous movement.

If the ataxia persists, an occupational therapist would be a valuable resource to see for 2-3 visits. They can provide built up and weighted silver ware (fork, spoon) to make eating easier as well as other self-care tips and adaptive aids.

I would urge you to keep the neurology appointment even with a hopefully normal PET scan. You can discuss the ataxia and adjunct medications that can ease the dystonia.

Believe me, I understand what it is to live in a body that no longer seems to be your friend. When the chips are down, our pets are awesome. You have mentioned your pet dog as source of comfort. Look to your dog for cuddles and tail wags to make it through difficult times. The human and canine bond is a special one and especially comforting when confronted with illness.

Sending you faith and hope,
- K -

Lee & Karen,

As always, thanks so much for your insight & recommendations.

I think what has me most concerned is the fact that each day, the unsteady feeling has increased, just like the last 2 times they found a tumor. It's hard for me to forget those awful experiences, especially when they weren't THAT long ago.

After much online research (and we all know how the internet can be a blessing and a curse, in that regard!) I'm wondering if my radiation oncologist tapered me off the Decadron too quickly and/or too soon. The way he went about it seemed rather willy-nilly, and from what I've been reading, brain edema can be 'at its worst' in the weeks AFTER radiation. I'm going to ask my regular onc about this as well, as the rad onc I would only see on Mondays while in rad, and even then each visit was like, 2 minutes long, at most.

This morning I had a crying fit before my husband left for work. I try NOT to cry in front of him, as I know it upsets him, but I couldn't contain the tears. Sometimes I see a look on his face that appears to be resignation, despair/hopelessness. I don't like to call attention to such things, but it bothers me. I've told him before, "I need you to be my cheerleader. 24/7, no matter what." But no. I'll see a look, or he'll say something. I've told him he is absolutely entitled to his feelings and fears, but to express those to someone besides me, because I'm so full of fears, etc. that I can't handle his, too. I KNOW this is hard on him, the whole situation sucks.

AnnClare:
Yes, I would agree that your increased symptomatolgy could be related to late effects of increased cerebral and cerebellum edema secondary to the whole brain radiation.

Discussing reintroducing Decadron would be appropriate. ASAP.

It sounds as though your radiation oncologist has left you blowing in the breeze without adequate aftercare. Not acceptable.

As far as you relationship with your husband, recognize the enormity of the stress that he is facing.

Any life-threatening illness is a family illness - everyone in the nuclear family is affected.

My compromised health has been a serious strain on my family. My mother reacts with full-fledged panic attacks. My brother more often than not ignores my situation and adopts the flamingo head in the sand position.

One thing that I have learned is that my family members each have the right to own their own feelings. In asking your husband to be your cheer-leader 24-7, you may be asking him to adopt a role that he cannot fully embrace because his innate fear for your wellbeing is overwhelming. Your husband my not be in your body, but I guarantee you that your husband feels your pain at a visceral level. He is scared . . And sad . . Just as you are.

I would encourage you to see if there is a Palliative Care program available at your hospital or cancer center. I am in Palliative Care and the program provides a strong structure for family counseling as well as 1:1 work with a psychologist and family sessions. Psychological counseling for the whole family has made my situation more tenable for the long term health of my family - we are each healthier for the supportive services.

You are in a difficult life place. Without a doubt. Reach out to your treating hospital or cancer center for more structured supportive care that will embrace both you and your husband,
- k -

Karen,

Thank you - for everything.
I have not worked closely AT ALL with the rad onc, unlike with my medical/regular onc., who "gets" me and takes his time to explain things & listens to me. Only once, earlier this year, was I VERY annoyed with him as I felt I was being rushed. That is the exception to the rule, in my many interactions & appointments with him. AND I know he is often 'triple-booked,' as I've heard the desk staff say this more than once. Not trying to make excuses, but I get it. And any confusion/communication errors I had experienced previously were addressed and clarified during our next appointment. I will also consult with him, and/or the neurosurgeon, about Decadron.

I can relate to your family's various reactions. Sadly, neither of my parents are still living (Dad - struck by intoxicated driver a week after my 7th birthday; Mom - passed in 2004 @ 72 years old - health issue). My oldest (and most comforting sister), lives way up in NJ (I'm in S. Louisiana), and my other sis lives an hour away, but reacts similar to the way to you described your brother's reaction. When I was going thru chemo last year, I'd text her now & then with updates, which went unanswered. That hurt. If I'd text her about silly, superficial stuff & I'd get a response almost right away. When shit gets real, she shuts down. I came to accept that as her coping mechanism & I stopped trying to pull her in, understanding that she couldn't deal. I know I need extend this same courtesy to my husband. It's just harder when we live in the same house . . . AND because he's my husband. And best friend.

I WILL check into palliative care, especially therapy/counselling. My cancer center has an integrative & wellness program, and I know that counselling is a service they offer. I realize that I'm often expecting my husband to fill a role that he can't, at least not on a constant basis. We have been married for 16 years, but have known each other for 21, as we were friends for years before we dated. Shortly after meeting him, I remember thinking I felt a connection, like he was my 'soulmate.' The thought of leaving him behind breaks my heart . . .and I know he feels the same. I try not to let my mind go there, but some days, especially when you're not feeling well, it's hard not to. We're only human.

Well, tomorrow is another day. I'm hoping, as I do every night, that I'll feel even a teeny, tiny bit better tomorrow than I did today.

Dear AnnClare,
I don't have the invaluable experience that Lee and Karen have offered but just wanted to send hugs and well wishes to you. I pray you will have relief from your anxiety and other symptoms and more importantly
good news on the Pet scan very soon.
Mary

Mary,

Thank you for your kind words and support. I really appreciate it.

I'm sorry you're having such an awful time!*hugs* I hope the PET scan brings good news!*hugs*

As others have noted, I don't have the experience or knowledge that Lee and Karen do, but I wanted to let you know that my heart goes out to you. This wretched disease steals our humanity in so many ways. I hope you are able to get some good news and some relief, and I'll keep you in my thoughts and prayers.

Hugs from me,
Tracy

(((AnnClare)))

Thinking of you, hope you are doing well.

Lee