Getting back to normal

I have been taken off interferon and my chemotherapy has been discontinued.

One of the side effects of interferon is depression and suicide ideation. The interferon messes with the serotonin in the brain and roughly 25% of patients on interferon end up being treated for depression.

I became dangerously depressed and had to be hospitalized for a week. I have been out of the hospital for a week now and I am doing MUCH better. I think the combination of being off interferon combined with proper antidepressant and anti-anxiety medications has helped tremendously. As well I have been attending outpatient therapy groups and seeing a psychiatrist. All of these things have combined to improve my mental state.

I made it through the most important part of the treatment - the 4 weeks of every day intravenous regimen - as well as 2 months of maintenance and I will continue to have regular skin checks and scans for the next 5 years. I will also continue to see my psychiatrist until I have recovered from this depression.

I am pleasantly surprised at how rapidly my energy is returning. I am no longer experiencing the debilitating fatigue, lack of strength and stamina and shortness of breath on exertion. I am also eating and sleeping normally again.

I'm feeling well enough to return to work and I am going to start back half days starting the first week of March.
Overall, I am really glad to have the treatment over with. I'm looking forward to getting my life back :)

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A very good doctor's appointment

Mearrik had an appointment on Monday with the pediatrician specialist who has been monitoring Mearrik's development for signs of Dandy-Walker impairments.  This doctor specializes in neurological issues - he was Brent's pediatrician and treated him for ADD - so we know and trust him.

So far there has been no signs whatsoever that the Dandy-Walker defect is causing any cognitive or physical problems for Mearrik.  He is reaching his developmental milestones appropriately.  The doctor would like to see Mearrik once more three months from now and if they don't see any issues by that time then they will give Mearrik the "all clear".  He will continue to be monitored by his family doctor but he won't need to see the specialist any more.  We are so pleased and relieved...but not terribly surprised.  We have known he is an amazing boy all along, as you can see by the video.  *big grin*

Mearrik and Me: Break

Mearrik and Me: Break: "No treatment this week. I've been having trouble tolerating the side effects of the treatment since starting on maintenance. The docto..."

Break

No treatment this week.

I've been having trouble tolerating the side effects of the treatment since starting on maintenance. The doctors prescribed something for pain relief (percocets) which seem to be working for the pain, but have side effects of their own. I had a couple of nights with excruciating abdominal pain and vomiting lasting several hours; both nights I had used the percs for side effects. I thought that taking them on an empty stomach might have been the issue, so on Friday night I made sure I took them with food and I didn't have any problems that night. Problem solved, I thought.

Monday I had appointments at the hospital; 8 am for bloodwork and 9:30 with my oncologist. Routine stuff. I woke up at 6 am with steadily worsening abdominal pain and vomiting. By 7 am I knew I would not be able to drive myself to the hospital, so I called my dad who came right away and took me. By the time I got to the hospital I was in rough shape and they took me up to the cancer clinic in a wheelchair and right up to a bed.

I ended up spending the day there having all kinds of tests (THREE blood draws, and they had to poke me a total of 6 times because my veins kept collapsing - told you I have crappy veins; EKG, urinalysis, and a bunch of xrays that took forever) and got some IV hydration (another poke) and in the end they still could not determine what was causing the pain. Eventually they gave me - can you guess? - percocet for the pain! It worked, though the pain went on for a full 24 hours before subsiding.

They *think* that the problem is acid building up in my stomach which is causing the pain. The interferon causes my stomach to empty much slower than usual, which causes nausea, but its unclear if the abdominal pain is related. The doctor prescribed yet another med to treat the stomach issues. Its kind of funny when you think of it: taking one med for side effects that are caused by another med that is being used to treat side effects of yet another drug! Or maybe its not so funny...

Anyways, until we get the abdominal issues resolved, no treatment. I don't mind the break.

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Pain management

I am in my third week of maintenance (injections every other day now) and each time I have injected, the side effects have been so miserable they actually wake me up and prevent me from sleeping. The headache and all over body aches are worse now than they were on induction. They last longer and seem worse in intensity to me.

Today I gave in and called my Supportive Care nurse who communicated what's going on to the doctor. He wrote a script for pain meds.

When I called I felt embarrassed, like I was making trouble for them. I was worried that they would not believe me or think I am a whiner. I know this is irrational, but that's what it is like for me. But my nurse reminded me that the best thing for me is to complete this treatment and I very likely would not do that if I had to put up with chronic pain and sleeplessness for another 45 weeks. Managing the pain quickly (and any other troubling side effects) is what she is there for. So even though I was reluctant to do so, I'm glad I called.

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LTD

I suppose I have been in denial. My return to work date has been pushed back three times now. I originally hoped to be back to work by the end of November but here we are in mid- December and I'm still not working.

I'm still just too sick. I was hoping that the maintenance phase would be easier to tolerate - and it is a bit better - but I'm still no where well enough to work every day, even half time.

So today I bit the bullet and sent in my insurance paperwork to file for long-term disability. There is a 17 week waiting period, but I can collect unemployment sickness benefits while I wait for the LTD to kick in. Then I called my boss and gave him the news. I'm very disappointed, but this is just my reality right now.

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The Mear Bear

and I got up early this morning. He slept 7 hours through the night so he ate a big bottle when he got up.

He is all smiles this morning - when I got him out of his bassinet, he looked up at me and then got the happiest smile on his face, as if to say "I know you!".

He's been sitting in his bouncy chair having a little chat with Winnie the Pooh. He tries to reach for Pooh but of course he's not yet coordinated enough to get his hands to do what he wants. It certainly isn't from lack of trying though! He gets his arms going and soon his legs are pumping up and down as if he could propel his entire body over to get Pooh. His patience and persistence amaze me.

Sometimes when I am holding him I have to remind myself that this is my son's son. Because it almost feels as if he were my own. I feel a caring, protective mother's love for him - and yet when I see my daughter in law holding him I feel a pride that she is such a natural mother to him. Its hard to explain. If you have grandchildren I suspect you'll understand what I mean.

Oh! Now he's blowing bubbles! Isn't it funny how we take such pride in babies doing the most ordinary of baby things? He's yawned a few times and is slowing down his gymnastics so I expect he will soon be having a morning nap.

My grandson is with me and life is good.

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