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

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

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 on this blog:

tantrum,  baby angel,  bad temper,  old lady,  picture of tantrum

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

Krista

♪ Come on baby, light my fire . . . ♪

Daar is soveel dinge wat ek vir en van jou kan sê, maar soos ek hier sit, hardloop die gedagtes teen die mure van my brein vas en ek kry nie ‘n woord geskryf nie.

Ek wou vir jou skryf hoe veilig jy my laat voel – beskermd en gelief.

Ek wou vir jou skryf hoe jy my hart vinniger laat klop as ek jou sien of jou stem hoor.

Ek wou vir jou skryf hoe rustig en content jy my laat voel as jy my vashou en hoe nice dit is dat ons altyd op een of ander manier aan mekaar raak – selfs as ons slaap.

Ek wou vir jou skryf hoe jy my bloed deur my are laat bruis en jaag . . .

Ek wou vir jou skryf hoe ek dit waardeer dat jy saam kook en kosblikke pak en shopping doen . . . selfs op jou eie as ek moet laat werk.

Ek wou vir jou skryf dat ek jou nie sal ruil vir al die geld in die wêreld nie . . .

Dat jy vir my die slimste, sexieste, dierbaarste, liefste Lyfie in die hele wêreld is.

En dat ek al jou drome wil waar maak.

En dat jy my alles is.

En ek baie lief is vir jou.

Lekker verjaar, Lyfie!

Jou LLWD

Ek het nie vergeet nie Oupa, dit was net ‘n mal huis – vrek besig. Die hele dag lank het gedagtes oor Oupa deur my kop gewoel.

Soos:

Wat as Oupa nie in 1930 gebore was tydens die depressie nie, maar later?

Wat as Oupa dalk verder kon skoolgaan na St. 6?

Wat as Oupa Jan nie so gesukkel het nie?

Sou Oupa dan ‘n ander mens gewees het?

Ek sou graag daardie arm-sukkel vir Oupa wou verhoed en Oupa se lewe meer gemaklik wou maak. Die oumense sê nie verniet AS is verbrande hout nie.

Dankie Oupa. Ek sal nie vergeet nie.

Krista

PS: Wat as Oupa nie op 76 jaar dood gegaan het nie?

20 Oktober 2009

Hoe meer ons hoor, hoe meer stres ons, hoe minder is ons lus en hoe meer bekommer ons.

Die uroloog het Plasie verwys na ‘n neurochirurg – die moet ons loop sien op Vrydag die 13de November. Nog ‘n hele blerrie laaaaaaang maand weg. Volgens die uroloog is die adenoma in Plasie se brein (gewas/groeisel wat op sy hipofise druk) redelik groot en is behandeling met medikasie nie sommer suksesvol in sulke gevalle nie. Dus reken hy, sal die neurochirurg die groeisel sommer deur Plasie se neus kan verwyder. Nê? Ek wil sien hoe kom hulle deur daardie kraaines van gebreekte neus en verwronge sinusse . . . dalk maak dit hulle dit sommer ‘n 2-in-1 en fix die sinusse ook!

Wat alles ‘n nuwe boek vol vrae oplewer. En ons is bang. Skyt- verskriklik bang! Dis ongevaarde waters hierdie. EN die vrae word al hoe langer en meer. Opereer is nie die vanselfsprekende gevolg van die besoek aan die neuroloog nie, ons moet eers vrede maak met die antwoorde wat ons daar gaan kry en slegs as daar GEEN ander uitweg is nie en dit MOET gedoen word. Vir volk en vaderland. Vir Plasie se gesonde en langdurige voortbestaan.

Die feit dat daar ‘n “alien” in Plasie se kop groei, freak hom uit (dis te verstane, dit sou met my ook so gewees het). Alles word nou in ‘n ander lig gesien. Dis baie weird.

Het ek al genoem die gewag maak ons klaar?

Krista

Recap of the last week:

Hubby’s been to the urologist - scanned, prodded, felt up, coughed, the works. New blood tests ordered. That was on Monday. Did I mention that we’re tired of doctors and waiting for results? And we haven’t been at this that long.

Yesterday the doctor phoned – we need to have a MR scan of Hubby’s brain done. Apparently his prolactin levels are very high which may/may not be caused by a growth/benign tumor excerting pressure on the hypothalamus-or the pituitary gland – I’m not sure which.

Both the too high prolactin and testosterone levels inhibits sperm manufacturing and the normal male bodily processes.

I’m not going to bore you with the detail, but this may also be the cause of his body not producing testosterone and the origins of his frequent head aches. He needs to stop taking his testosterone injections immediately – which is a bit difficult if you only get one every 3 months and you had your last one 2 weeks ago.

The good news is that if this is indeed the case, it is treatable with medicine which will make the growth/tumor shrink.

Now . . . my brain’s fried/overloaded and I’m taking a time out on info. I’m just taking it one step at a time from here.

Have I mentioned that we struggle to cope with waiting periods? Waiting for doctors and waiting to have tests done and waiting for results . . .

Next up: MR scan (hopefully sooner than later!)

Krista