Goodbye to 2009 . . .

So much has happened this year, it might be good to say farewell to 2009. But as the saying goes: you know what you have, but you don’t know what you’re getting. I sure as hell don’t hope we have to be afraid of what 2010 is bringing . . .

The Strong One is now on 3x Dostinex 2x per week (initial dose: 2 2x per week) and thus the side effects are worse. The depression is major, the tiredness is off the scales, the muscle cramps are getting extremely painfull.

The feeling of uselessness he’s experiencing are the worst for me, though. Even though I keep reassuring him that he’s not worthless and that what he’s experiencing is due to George and the treatment, it doesn’t help much. He’s going to feel useless untill we’ve sorted this out and he feels better. Until we’ve taken care of the prolactinoma and his hormone levels are back to where it’s supposed to be, nothing is going to be normal – or even close to normal as we knew normal to be.

And I’m scared . . . being a control freak, the unknown is a massive black cloud hanging over my horizon. I can’t fight it if I don’t know what it is or what will beat it down. I can’t plan any defensive or offensive strategies. I don’t know how long it’s going to take to fight it or what all the risks are. I don’t know any of the consequences of any of the proposed plans of treatment or outcomes.

I hate the uncertainty.

But what  I do know is that I will fight George every step of the way. With all that I have. (You hear that, you bugger?) I will be next to MyLove every step of the way. Sometimes I will be pushing, sometimes pulling. But I will be there. And I wouldn’t want to be any other place.

So here’s to beating George in 2010!

Krista

Merry Christmas to all . . .

Hope you have a festive Xmas and a very jolly New Year.

Krista

2009: no baby yet

I know, I know, we’re still in the fight, there’s still time and most of all there’s still hope. While the Dostinex is fighting George, we’re fighting the Black Dog and his companion, Fatigue. Low spirits and the non-desire to do anything all round.

Hopefully when StrongOne sees the neurologist early 2010, we’ll have a clearer idea of how George is shrinking and whether we can speed things along with surgery. StrongOne prefers having it dealt with and getting it over asap than dealing with time and side effects of medication. He is afraid that fertility time will run out quicker than treatment of the tumour will allow for.

While our first objective is his health and overall well being, we would dearly love to have a little bambino to cherish and love. I understand his concerns and I have worry over them too, but I would rather have him healthy and strong without a baby than having nothing at all.

Yesterday in the local mall, we both were picking up on the high number of pregnant girls doing Christmas shopping. Children having children seems to be a popular hobby these days . . . Yes, maybe I’m just a little bitter, but at least I don’t grab them by the head and slap their faces against shop windows . . . yet . . . hehehehe . . . .

So, it seems that 2010 will be the year of news, decisions and discoveries.

Will we be successfull in beating George? Will we be able to conceive in the normal way? Will we have to revert to IVF? Will there be time? How long can we wait?

Although I’m shit scared about the responsibility of having a little “us”, I can’t wait. The what-if’s and what-if-not’s are hiding in the dark corners of my mind . . .

Krista

Difficult times ahead . . .

Because we are travelling the road unknown, we sometimes land in ditches. We sometimes fly through the air. We sometimes race on a straight and level road. We’ve mostly had a scenic route with a few ups and downs, but I think it’s changing. PJ’s treatment is now changing the scenery and the destination.

The healty lifestyle we’ve been doing since June together with gymming helped chase away the black dog of Depression. He slept well and was overall in good spirit. Since he started taking the Dostinex, things changed. Gradually in the beginning, but I think there’s a build up occuring.

We’re really glad Riempies found PJ’s post about the prolactinoma and he gave us good advice. He had the same tumor and it was treated sucessfully. He did however say that you will feel tired and depressed when you stop the testosterone injections, but that it will get better once it’s administered again. The only problem is that it’s going to take some time. Time spent waiting/undergoing treatment can be a bastard difficult.

So here we are: PJ’s tired and depressed. No gymming this week. No sleeping. No feeling hopeful and no happiness.

I’ve told him I understand and will continue to support him to the best of my abilities. I try not to upset/bother him with the normal day to day nitty-gritties, I try to be cheerful and not fall prey to the black dog.

My catch-22: do I let him rest/slack some till he feels better and up to gymming and life and such? OR do I push him to continue gymming, being the kick under his butt that he might/might not need, keep pushing him?

Both have positive and negative indications and outcomes. At this stage my gut feeling is to give him some time. To take some days off and not pressure him. We have the time, right?

Krista

Dear George . . .

Dear George,

Yes, I know he calls you the Alien, but it feels alien to call you that. It’s easier to talk to a name than to just a thing. So I’ve given you a name. George. As a memory to the pills he now has to take to get rid of you. And the side effect the Dostinex has on almost everybody who takes it. Luckily is doesn’t make him nauseous, it just disorientates him and makes him extremely tired. I say whatever gets rid of you, you bastard. Whatever it takes.

It’s disconcerting to see the Steadfast One unbalanced. It’s heartbreaking to see the Loved One stressing about costs and disabilities. My love will always be there to catch and carry him when his own power can’t carry him on, but it’s still unsettling.

If it wasn’t for trying to figure out why we haven’t conceived yet (after almost 3 years of trying), we never would have discovered you. And eventually he would have lost the sight in his right eye because you just kept on growing and were pinching the optical nerve of his right eye. But you know that, don’t you? It’s not like you care, not at all.

The doctor says you’ve been there for 5 – 8 years, silently growing in your little cosy nest on the pituitary gland, in between the 2 halves of his brain. And we didn’t know. If it wasn’t for his smart urologist, we never would have known until it was too late. I think that’s almost the scariest fact of this whole thing – it’s not like a boil or an infection that shows symptoms. You’ve grown silently, stealthily. All the while exerting pressure on his pituitary gland – so much so that it stopped functioning. You shut down his testosterone production completely; they couldn’t even find traces of it in his blood. You reduced his FSH (follicle stimulating hormone) so that he didn’t produce any sperm.

I felt silly after receiving the sperm analysis results when I think of the pregnancy tests I’ve bought – being late some months, I was hoping for good news. And silently very sad when it showed negative and I started menstruating again. And I didn’t want to show the sad to him, he was already depressed enough. Tears because of the false alarms would have pushed him into a darker pit, fighting a bigger black dog.

George, you bastard. I’ve started to give up hope (very silently) that I’ll ever see him with our baby in his arms, that I’ll ever see the pride and love on his face when he’ll look at our baby. The hope that we’ll be completed with a small token of our love to care for and love for ever.

But we’ve got you now, you bugger. Whatever’s left of you after the pills will be removed next year. And hopefully as you shrink and the pressure on his gland is relieved, his hormones and other important levels will return to before-George-state and he will be better. And he will stop worrying (yes, I know there will always be worries and yearly/biyearly checkups). And that the easy smile will return to his face and his heart.

I can’t wait for a life without you, George. Good riddance.

The Wife

Love is . . .

. . . two people sharing one heart . . .

The fight has begun . . .

The Alien in PJ's head (and I'm not talking about his brain . . . )

We like the Dr’s directness and the fact that he doesn’t sugarcoat issues, contributes a lot to this. He sat us down and asked PJ some questions. He did a manual eye test and looked at the MRI results. Made him stand on one leg and pinpricked his face. Then he told us:

The prolactinoma’s are picked up earlier in women than in men – it causes milk in women (without being pregnant) and thus the growths are normally smaller. Because it’s not picked up early in men, the growths are larger. PJ’s growth is huge! Another year or 2 and he might have lost his eyesight in his right eye due to the tumor pinching the right optical nerve. It’s growing towards his sinuses as well because there is no more space where it’s currently situated. Because it’s so big, they will probably have to take it out surgically in the new year – tumors of this size normally does not disappear and will probably reoccur later. There has been previous bleeding on/from the tumor which shows as cysts on the MRI. They will operate through his nose (fixing it at the same time) and give the tumor a shot of radiation to try and minimize the reoccurence.

He needs to take 2 pills 2x a week, with weekly blood tests to observe the prolactin levels which should indicate whether the growth is shrinking or not. The pills costs R2700.00 for 24. The Dr. and internet researched warned on nausea from the pills which can be quite bad. He took his first dose Saturday morning after breakfast (on weekend break-away at Die Oog). No nausea, just a severe case of dizziness and disorientation. He took an afternoon nap (which he seldom does) and clutched out again just after 9 pm Saturday night.

So far so good. Next dose Tuesday night after gym and 1st blood tests on Thursday. His prolactin levels should start dropping after about 3 weeks and as the tumor shrinks, his hormones should get back to normal (returning libido, testosterone manufacturing, weight loss increase, FSH production increase, sperm production).

Here’s to holding thumbs and hoping and praying for the best.

Thanks for all your prayers and good wishes.

Krista

Love is . . .

Love is . . . hurrying to get home – knowing he’ll be there.

Hoping for time to fly . . .

I know it shouldn’t, but it does. It’s all we can think about. It fills every waking moment, every thought. It’s filled with what-if’s, maybe’s and what-not’s.

Next week Friday we see the neurosurgeon. Hopefully we won’t be sent to yet another specialist, yet more blood- and other tests. Hopefully this is the last stop and treatment can be initiated. Hopefully the tumour can be shrunk with medication and no invasive brain operation is needed.

So even though we’re depressed and anxious, stressing and turning with thoughts  and questions running around like crazy chickens in our minds, there is always hope. Always.

No matter how many maybe’s or what-if’s or what-not’s, there is always hope.

I hope.

Krista

Top searches . . .

Top Searches on this blog:

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I wonder what the stories behind these searches are . . .

Krista