Eating Muffins in an Agitated Manner

My Book Report

Posted by Sari

One of the things that does create some friction between Jukka and me as far as the cancer is concerned is the fact that he is completely happy with knowing the mere outlines of his treatments while I really want to know more. I have surfed to Suomen Lymfoomaryhmä, National Cancer Institute and Lymphoma Information Network, I have checked out what chemo agents he is getting (Etoposide, Prednison, Vincristine, Cyclophosphamide and Adriamycin(Doxorubicin), if I have dechiphered the information correctly), and I even have resorted to old fashion means of igathering information like (gasp!) books.

Lately I have been reading an American book Non-Hodgkin’s Lymphoma: Making Sense of Diagnosis, Treatment & Options by Lorraine Johnson. it is a relatively jargon-free and quite useful primer about NHL to patients and families, and I have already filled it with little post-it notes. It is, however, also written for American audiences which makes chapters like Finding the Right Oncologist and Insurance, Finances, Employment, Record-Keeping not only unapplicable but sometimes also baffling. Take this for example, from the chapter If You’re Hospitalized:

If this is a return trip, bring the phone the hospital may have sold you during your prior stay.

I mean say what? Even in our wellfare state the hospital charges Jukka for the calls he makes, but to buy a phone from the hospital? What is up with that?

I have to say also that reading the chapters about medical insurance and doctors and HMO’s makes my head spin, and there seems to be greater uncertainties in the system compared to ours. Stories of people unable to change jobs because new health-plans would not cover pre-existing condition of a family-member, or Lance Armstrong calculating if he can pay for his treatments if he sells his house and car do not exactly inspire confidence.

On the other hand, good health-plans seem also to offer more than what communal health-care can offer to us, like a private room at the hospital.There is also more choice. USA is a larger country with lots more hospitals and doctors, so going shopping for the right doctor is sensible.

We are lucky that we live ten minutes drive away from Finlands largest (I think) University Hospital which is also in charge of cancer treatment, research and training of doctors for most of South of Finland, so Jukka is getting competent and up-to-date care so near home that on good days he can take the bus to and from the hospital.

It needs also to be added that I have no practical knowledge of the ins and outs of US health system, just a lot of prejudices and few random examples. I missed my chance to gain first-hand experiences when I could not presuade Jukka to go to the emergency room in Priceton when he had an ear infection even though I had paid quite a lot of extra to make our travel insuracne covered medical expenses in States.

The phone thing still baffles me, though....

I, Cyborg

Posted by jukkahoo

Been a bit of an overwhelming last couple of days. When bad news start coming, they keep on pouring down on you. First of all, I want to wish a lot of love, strenght and support to Päivi and Pali. Be strong and trust the Mighty Modern Medicine!

Apparently my chemo isn't kicking in as doctors have ordered. The tumor is still a bit worryingly biggish and henceforth I have started radiation therapy. Dr. James (surname, number 5) mentioned something about four weeks plus my normal chemo. I'm... slightly more worried and aghasted than I was a week or s-g ago, but hey!, whatever it takes.

Talking about "whatever it takes", I was in surgery. Like Sari has already told, a piece of high-tech gadgetry was installed to my chest with two tubes running under my skin towards my neck and collar-bone. Wow-wee! The thing now is that since I've just been thru chemo, my body isn't really healing them wounds and stiches. They itch. A lot. And then there's this feeling of something under my skin... that is under my skin. A fun thing is trying to sleep on your back and not move that much. `Cause, you know, it... hurts.

I feel OK'ish. Surprisingly so, but I'm still a bit nauseous and I tire easily. So what's new?

Future looks very organised: radiation every weekday (for four weeks) and back to ward Seven by 23th.

Love visitors. Really. Mean it.

Ja hieman taas kotimaisella. Kotona on kyllä hyvä olla, mutta soisinpa asioiden olevan kuitenkin paremmin. Eikö se nyt riitä, että minua kiusataan kivulla ja säryllä, mutta että muitakin? Päiville mitä parasta vointia, voimaa ja jaksamista.

Rintakehässäni kököttävä metallin, muovin ja teknologian pala on sellainen ovisilmän oloinen ja kokoinen vehje. Sattuu hieman, mutta se johtunee lähinnä noista tikeistä, jotka eivät tässä sytostaattien aikaansaamassa heikotustilassa pääse paranemaan normaalisti. 20. päivä ne kuulemma otetaan pois ja jäljelle jää vain pienet arvet, jotka katoavat kokonaan. Pläääh. Onneksi koje jää sisään muutamaksi vuodeksi, jos vaikka tässä pääsisi ulkomailla käymään jossain välissä läpivalaisulaitteita piipittämään.

Ja kuten valitettavasti sitten pääsi käymään, niin ei riitä pelkkä kemikaali tekemään selvää tästä syöpäläisestä, vaan tänään alkoi sitten sädehoito. Neljä viikkoa tohtoritädin mukaan nyt ainakin, sytostaattihoitojen lomassa, jos vaikka tokenisi.

Säde-puolella ihmiset näyttävät jo enemmän sairailta. Kun on osastolla, sitä ikään kuin tottuu kaljuihin ihmisiin, mutta ainakin ihmiset vielä ovat jotenkin "kokonaisempia". Kellarissa (sillä sielläpä ne sellaiset kojeet ovat) ihmiset muuttuvat enempi "People under the stairs" -leffan näköisiksi möröiksi. Se hieman ahdistaa. Mitä tässä oikein on edessä? Kuinka "helppo" tämä syövän muoto oikeastaan onkaan?

Vaan, ei auta itku markkinoilla. Postailkaa, kirjoittakaa vaikka kirje, käykää katsomassa ja muistakaa pysyä terveinä!

My man the Cyborg

Sort of at least. His life is aided by a mechanical implant, and seeing stuff from the SF angle makes them more interesting and less daunting. He was at Kirurginen Sairaala yesterday having an operation where they put internal catether on his chest so they can plug the drip there. We had very serious-looking instructions forbidding him from eating or drinking on the morning before operation and stating that he has to have an adult minder present  for the next 24 hours after the operation. They even stated that if he was going to be picked up from the hospital by car, there had to be one other person besides the driver along the ride. So what does he do? He phones me when they were discharging him, I phone my Mom and we get on our way towards the hospital. I call him back saying we are on our way and he informs us that he already walked out from the hospital and is at this second hand bookstore quite near and would we pick him up from there.  Sigh. Well, at least I have always wanted to read Orhan Pamuk's White Castle.

Now Jukka is back at HYKS for the fourth Chemo cycle so if you feel like cheering him up he is at the usual place, Ward Seven  at  the Meilahti Cancer Clinic until Saturday morning.  Genrally he is feeling quite chipper on the first two days of the chemo, its on the third day that the side effects kick in and he is feeling crappy for four to five days onwards.

I am not quite sure how he feels about his catether, except he now really wants to go to the States just to baffle airport officials. Apparently the thing registers in all sorts of detectors; they even gave him this card to prove that he has not secreted a dangerous weapons on his person. He and my mother who has two artificial hip-joints and a similar card have already compared notes...

Speaking of US, BBC World had a small report that my favourite building in the world has been successfully restored. Yay!  I know it is not a terribly original choice but there it is, no other building has ever quite taken my breath away the same way as Fallingwater. Next time I am in the TriState area I am going to find a way to get to see it, car or no car...

Sari

Gifts and outings

Posted by Sari

I've got a flu. Not an especially bad one, but flu nontheless. What makes this difficult is that Jukka should not get infections because that might slow the chemo time table. And, it is of course clear that I went and got this flu deliberately just to sabotage his recovery. I just love irrational guilt.

Jukka seems to be feeling better after this, the third chemo session than he did after the second one. The greatest problem at the moment is that we are running out of juices for him to drink. Water apparently tastes afwful, and we have been through all the non-citrucy juices and sodas available in Finnish shops one by one. First cranberry was OK, then ice-tea, then this mango-passion-fruit-grapes-apple thing, but now all of them have lost their allure, and I am running out of ideas. At the moment the home-made currant and lingonberry juices (thanks to Ylva and Päivi for replenishing my stores) seem to be going down reasonably well. I think I try blending the commercial juices with mineral water to cut down the sweetness and to add carbon, maybe that will help.

He also still sleeps a lot but he has been in a better mood. I think the company is cheering us both up. We have had constant stream of visitors which certainly relieves the monotony of endless hours of watching TV. As, Jukka says in Finnish below, special thanks to our clever, clever friends who found his Amazon wish-list and bought him a nice selection of books and CD's.

And special thanks must also be given to Finnish Tolkien society for a truly classy gift. Now, for those thousands of visitors who are not in familiar with our tribal traditions, Finnish Tolkien Society arranges a party on Bilbo's and Frodo's birthday, and everybody brings a gift and receives one randomly in return. There are few pieces of mathom which circulate year from year and generation to generation. I wonder who has that thing with a wooden handle and a metal ring welded at the other end? I don't think we ever found what it actually was. Anyway, to continue this fine tradition a delegation from the birthday party descended on us with as fine piece of mathom as I have ever seen. A mermaid cigarrette-lighter whose nipples glow when you light it. This is not exactly it but pretty close. What a wonderful addition to our collection of erotic kitchenware. We have put her next to the small statue of Lenin who is wearing a snout as a hat. I know, I know, you have to see the whole tableau to really get it.

As Jukka has had plenty of visitors to keep him entertained I have braved the outside world. Tarja and I went to Love and Anarchy film festival to see Devdas, a hindi melodrama we had seen before on DVD, but wanted to see on big screen. Devdas was maybe the fourth or fifth hindi film I saw and found the costumes, scenery, coreography and music wonderful, but the acting extremely stiff and the dialogue and story unwieldy. Now, after having seen closer to thirty hindi films, I liked Devdas much better. There were a number of cultural references I now understood much better and I was much more receptive to the melodrama. It would be interesting to see the 1950s version of Devdas with Dilip Kumar as Devdas to make comparaisons.

I was also at the British Embassy for a seminar on "Cross Cultural Confusion" on Friday last. It was great fun to use the academic part of my brain for a change. I have been so tierd these few months that I have not actually been doing work in any meaningful sense, just mechanically going through my sources. Especially interesting was professor Chesterman's lecture on Memetics. I am not sure there is anything really new from the perspective of cultural studies in the thing (unless, of course, neurologists will find physical traces of memes in our brains one day), but it gives an interesting framework through which to analyse the spreading of ideas within a culture.

Next big outing will be Finlandia Trophy My sister and I have whole event tickets and plan to spend the whole weekend at the rink. Yay.

Vieraita ja lahjuksia

Posted by Jukka

Kolmas hoitokerta on ohitse ja olo on aika lailla samanlainen kuin edellisilläkin kerroilla. Siis ei mikään "jippii ja jahuu! elämä on ihanaa!", vaan ihan sitä samaa, mikään ei maistu, väsyttää ja on paska olo. Ikävämpi homma, mutta sellaista se nyt aika lailla lienee tulevaisuudessakin.

Sain luettua kirjan! Graham Chapmanin omaelämäkerran Liar's Autobiography Part VI. Hilpeää roskaa edesmenneen Pythonin toilailuista ja seksielämästä gininhuuruissa ja vähän muussakin eetterissä. Alku on aivan hillitön, keskikohta rokkaa vahvasti totta ja tarua (etenkin) sekoittaen ja lopussa luiskahtaa hieman löysällä kädellä kuin varpusparvi sytostaaattihoitoa saaneelta porsliinipyttyyn. Ihan kiva, ehkä jopa enemmänkin.

Viime viikonloppuna oli taas vieraita (ja muinakin päivinä toki myös), mutta nämä toivat lahjoja. Olin erittäin otettu Lance Armstrongin elämäkerrasta (kiitos ManU ja STs?), koska minulle paljastui nyt että olen nauttinut kiellettyjä aineita eli minä kärähtäisin tällä hetkellä EPOn käytöstä! Siinä meni siis puhdas maineeni urheilijana, kuinka minulla on nyt varaa tilittää huippu-urheilijoiden "vahingossa" elimistöönsä hankkiutuneista aineista, kun itsekin vedän kamaa kuin paraskin karpaasi? NEUPOGEN on kuulemma siis EPOa. Fancy that! Mutta lahjukset eivät suinkaan päättynet siihen: ehei! Todellakin oli tarpeellista lisätä perhe Halme/Polvisen tarpeettomien eroottisten käyttöesineitten joukkoon säädytön ja paheennusta mitä suuremmalti aiheuttanut messinkinen (tjs) merenneitopatsas, joka ei ainoastaan suhise ja pala vaan myös hehkuu himokkaasti! Pienet punaiset nännit jotka loistavat varmasti satoja metrejä pimeässä. Appivanhempien "riemu" oli lähes kihelmöivä! Tämä lahja ei saa jäädä tuleen makaamaan, vaan sen on löydettävä yhä uusia ja uusia omistajia. Kiitoksia B&F:n synttäreille lahjan toimittaneille ja Vinneille sekä Ellille kuriirina toimimisesta. Olen lähes... sanaton.

Tiistaina, juuri parahiksi ennen sairaalaan menoa (vaikka se sitten lykkääntyikin dopingin takia yhdellä päivällä, sillä kukaan ei ollut nähnyt tarpeelliseksi kertoa minulle, että NEUPOn käyttö pitää lopettaa päivää ennen sairaalaan tuloa - tosin edellisellä kerralla tämä EI ollut ongelma, mutta silloinhan minulla oli vasta kolmas (Tuomo) lääkärini messissä - nykyinen (Maija) on neljäs) Casa Tali sai isomman joukon ihmisvieraita, kun paikalle ilmaantui joukko akateemisesti lahjakkaita kaakuntekijöitä: L.A.M.A., Laatikko&Pepsi, Ylvis ja korttiin nimensä saaneet, joiden lahjapaketti osoitti suurta ymmärtyneisyyttä Amazon Wish -listani lukemisen suhteen. Ja listahan löytyy, kun klikkaa siihen oikeasta yläkulmasta löytyvään "wishlist"-palkkiin ja sitten hakukenttään näpyttelee "jukkahoo@sci.fi".

Kiitoksia niin ruoista kuin lahjuksista. Kaikkea on kokeiltu, suklaakaakku meni melko samantien ja juustokaakkukin paljastuu pakkasesta, kunhan makuaistit palaavat edes jonkinlaiselle tasolle. Levyt on jo kuunneltu (erinomaista pilpitystä) ja kirjoja katseltu sillä silmällä...

Sari vieraili sarjisfestareilla katselemassa suomalaista neilgaiman-hulluutta, jolla ei ilmeisestikään ole odotettavissa loppua tai rajoja. Ellei niitä sitten joku vedä, rajoja meinaan.

Kalliovuorten Prinssin viimeisin versio on rautaa! Hevoskuvat sopivat mukaan kuin nappi nenään ja kun vielä soundtrack jostain itsensä nerouden syvemmistä syövereistä itsensä ulos punkeaa, niin tästä tulee vielä jotain petervonbaghiakin suurempaa.

Alan pikkuhiljaa tottua kaljuuteen. Eteenkään kun se ei ole kovin kokonaisvaltainen, vaan sänki kasvaa sillä lailla aika kaikkialla, mitä nyt etuosassa ja reunoilla on sellaisia kirkkaita pälviä. Kasvissakin on karvankasvu aika niukkaa. (mutta siinähän ei ole mitään uuttaa... hirn.)

Jatkoa?

Ensi viikon lopulla sairaalaan verikokeisiin. Veriarvoissa on nyt ollut hieman huolestuneisuutta osoittavaa tulehdusarvojen kohoamista eivätkä ne maksa-arvot ole missään vaiheessa liian hyviksi ole laskeneet, mutta katsotaan kuinka tulevaisuus kohdataan. Sitä seuraavalla viikolla odottaa sitten uusi, upea kokemus, kun rintakehään rouskitaan sellainen putki, josta voidaan helpommin iskeä kanyyli suoneen ja loiskia sytostaatteja suoneen. Nykyisellään minun käsivarteni on lähinnä sellaiselta nistin pahalta unelta näyttävä pistosten peittämä mattokuvio mustelmineen ja verijälkineen. Mielenkiintoisen yksityiskohdan tuo se, että tämä ihonalainen putkilo on sellainen, että se hälyttää läpivalaisimessa! "Voi anteeksi, mikähän se voisi olla? Onko minulla jotain tässä rintakehän kohdalla... Ai niin, sehän on se rintaputkilo!!! Kas tässä todistus vajavaisuudestani."

Vajavaisuudesta tuli mieleen se, että sain uuden KELA-kortin, jossa seisoo YE 117. Mitä fhaan? Vakuutustietojen kohdalla se lukee, joten oletettavastikin se ei ainakaan alenna vakuutusmaksuissa... Toisaalta, ja tässä on se hyvä homma sosiaaliholhousyhteiskunnassa elämisen kanssa, Sari kävi juuri ostamassa 20 ruiskua NEUPOGENia. Ovh ~€3 500. KOLMETUHATTAVIISISATAA EUROA!!! YE 117 -varustetulla KELAkortilla (bling bling!) toimituskulut aka. viisi euroa.

Sosiaalidemokratia rokkenrollaa.

Ei että tämä nyt aivan ilmaista olisi. Sairaalassa makaaminen maksaa, leikkaus maksaa, muut lääkkeet maksavat ja palkka pienenee parin viikon päästä neljänneksellä sairaspäivien täyttyessä. Toisaalta ei tule tuhlattua aivan niin paljon kun ei juuri kotoa poistu (vaikka ruokakulut ovatkin nousseet proteiinipitoisen ruoan (lue lihaa) osuuden lisäännyttyä lautasella) ja esimerkiksi oluseen ja muuhun kurkkua kuivaavaan ei ole mennyt tässä pariin kuukauteen pennostakaan meikäläisen toimesta.

"Hei tohtori, miten se on tuon viinan kanssa, saako ottaa?"
"No tuota, sanotaanko että ei."
"Kuinka tiukka ei se on?"
"No, sanotaanko että erittäin tiukka. Vaihtoehtona voidaan sanoa olevan vaikka tuollainen paraneminen ja toisaalta sitten ei..."
"Jaa jaa..."

Ahoy. I'm getting to bed. I hope to be OK'ish around Wednesday. We'll see how this new patch of NEUPOGEN affects the life of jukkahoo and the Little Missus. Ta!

Talk like a Pirate!

Posted by Sari

Ahoy mateys and have a great "talk like a pirate -day":-)

Joku halusi aikataulun eli milloin Jukka on kotona ja milloin sairaalassa. Tämä on periaatteessa kovin helppoa tietää. Hän menee sairaalaan mafiaa edeltävän keskiviikon aamuna ja pääsee sairaalasta joko perjantai-iltapäivänä tai lauantaiaamuna riippuen siitä miten hoidot ovat sujuneet. Ja jos mafia-viittaus sekoittaa niitä kahta ja puolta mundanea jotka vahingossa tätä lukevat niin selkokielellä Jukka on sairaalassa keskiviikosta perjantaihin parittomina viikkoina.

The hair started to fall off. So we invited Petri, Hannele and of course Tuisku over on Sunday for cofee and ice cream and Hannele shaved Jukka's head. We also got to see a rough cut of their home-made Western "Prince of the Rockies" where Jukka plays a less than smart side-kick to the main villain. It is going to be great when it is properly finished. I want a part in the next production too...

I have to admit Jukka looks pretty brutal at the moment, I'd change to the other side if he was walking behind me on a dark street... I also had a very strange moment waking up monday morning and looking for a split second at the total stranger next to me.

Otherwise, he sleeps a lot. I mean really a lot. Which I guess is a good thing, insomnia on top of everything would not be nice. The general tiredness also translates to inability to do anything more demanding than to watch TV and talk with people. Reading and writing seem to demand too much concentration and effort at the moment.

His system seems also have gotten used to Neupogen so that the pain is nowhere near as bad as it was during the first treatment period. And we got the letter from KELA confirming that the state will pick up the bill on all the drugs he needs for the cancer. Yay for the nanny state say I.

I am fine unless you don't count increasingly short fuse and even that is probably at least partially due to PMS. Even so, I decided to add to my permanent trinity of irrational irritation and hatred (The Pope, Mika Salo and Jokerit) one more group:

People who cant use the travelcard It is really, really simple system. There are thousands of leflets available on how it works. For a year there were specially hired people to demonstrate how it works. Anyone, who asked had help and instruction available. And still some more moronic speciements of humanity seem to be unable to hold the card in front of the reading area for a second until the machine says "beep" and the green light goes on. If it is that difficult, stay at home.

I am tempted to add people who talk during the movies, but that is a loosing battle. I am resigned to going to see movies in future in theatres where the volume is very high and wearing ear-plugs. What a saddening thought. Talking about movies, I went to see Pirates of the Caribian. No, nobody talked, but the film itself was disapointing. Johnny Depp was pure comic genius and every minute he was on screen was worth the prize of admission, but the film itself was predictable, had too many too long fight scenes and the ending was just lame. Besides, how can anyone take Steve from Coupling seriously as an uptight but heroic British naval officer. I was waiting for him to call "Susan!" every time something alarming happened.

Ramblings

Posted by Jukka

Been a while, but reason is simple and rather sad one. I feel like shite.

Not only were the last few free days I had between chemo some of the most painful ones I've ever lived, but the second session with chemo was a really sickening ordeal.

I'm on this white blood cell regenerating treatment, called Neupogen. It is good for me (as it is good to any other cancer patient), but boyoboy is it painful. Well, duh! - yes it is.

Apparently about 22 percent respond to it like I did, with rather painful bone pains. The nurses told that usually the pain is managable, but some people "get" it the hard way.

Then was my 2nd session with MabThera and all them chemicals. I felt incredibly sick all the time. I didn't vomit, nor did I soiled myself in any other way, but there were moments when it could have been so much worse. And the feeling of nausea just isn't going away. There's this metallic taste in my mouth, making most of what I eat or drink to taste like... raw sewage (perhaps?). Water tastes dreadful. Karpalomehu is about the only thing that I can drink at the moment. Meat is good, so is choclate and french fries. Silly things. I even disliked an apple.

This is not my idea of a good time.

On the other hand, the ice hockey season has begun...

Lyhyesti: Paska olo.

Hieman pidemmin selitettynä: Sytostaattihoito oli aika ikävää, mutta ei niin pahaa kuin olin odottanut. Lähinnä se pahin asia oli pahanolon tunne ja hirveä väsymys. Pari päivää hoidon loppumisen jälkeen, kun oli jo päässyt kotiin, niin tila vain paheni ja paheni. Paha olo, päänsärky, väsymys, lihaskipua, joka on nyt erittäin paha, alaselkä ei pidä tästä yhtään. Ajatukset harhailevat ja ei jaksa. Kaikki maistuu paskalta. Siinähän tuota. En suosittele kenellekään. Vitun paha olo.

Tämä Neupogen-kuuri, jolla nyt olen on kyllä sen verta lamaannuttava ja kivulias perkele, että olo on kuin... pahemman kerran hakatulla ja potkitulla. Ilmeisestikin ihmisen valkosolujen aktivointi sellaisena supersykähdyksenä sattuu vaan aivan saatanasti. Särkylääkkeet ovat ihan jees, jos ne vain toimisivat edes hieman pitempään ja poistaisivat KOKO kivun edes tunniksi, mutta kun jomotus ja luukipu on vain sellaista jatkuvaa. Ja kylmä hiki. Yritä siinä sitten päätteen edessä tärisyttää jalkoja ja muuta kehoa (se auttaa, viemällä hermojen kautta lisäinformaatiota aivoihin, ei että kipu mihinkään katoa mutta saavatpaan aivot muutakin ajateltavaa) ja edes hieman kirjoitella.

Aion nyt ottaa melko iisisti seuraavat pari päivää. Ensi viikon suunnitelmat ovat yksinkertaisuudessaan perin simppeleitä: kotona, lepoa, pieniä kävelylenkkejä ja paljon nukkumista. Käynti verikokeissa ja tietokonetomografiassa. Sitten onkin kohta taas kaksi viikkoa vierähtänyt ja on taas aika palata sairaalaan ja ottaa vastaan solunsalpaajia. Jippii...

Changes

Posted by Sari

First week after the chemo session is now over, and it is starting to sink in how much the cancer affects how we live. When the diagnosis was made, there was such a sense of acute danger that we were just focussing on the day Jukka goes to the hospital and after that when he gets off. Now we are more able to think the months ahead, trying to restructure our lives in a completely different rythm than previously, and that is surprisingly difficult. After all, we are both more or less used to the freelance-life where we sleep long and stay up late if we feel like it and share the cooking and cleaning duties and do them when they just can't be avoided. Now the housework has to be done promptly, meals must be on time and we must be up in the morning so he takes his medication in time.

My bedside manner also sucks big time, and always has. I can nag about drinking enough, I can cook and clean and remember to take his shots out of the fridge in time for them to warm before he needs to take them, but empathy for someone elses pain just is beyond me. I just offer two paracetamols and water. Well, at least this has made absolutely chrystal clear that we made the right decision not to have children: if taking care of housework and one adult is this much work, I don't think I could have coped with children whose fears and responses are from adult point of view irrational and attention span much shorter.

The patient himself is still tired, but all the bloodwork has been good and the feeling of nausea seems to be passing. New problem though was that the doctor decided to start him on a course of Neupogen which is supposed to help to boost the production of white blood cells in his bone marrow. The drawback is that the side effects include some really intense bone and muscle pain. And I mean really intense.

In other news, we have been watching a lot of movies. Sodhberg's Solaris wasn't half bad, though maybe a bit aimless and reminded me a bit too much of 2001. My Big Fat Greek Wedding was cute, but the story did not really carry through. The cancer (unfortunately?) has not affected Jukka's taste in movies: he loved Dude where is my Car. Most I can say about it is that it was not nearly as bad as The Count of Monte Cristo which at the moment ranks as the worst film I have ever seen. It is just irredeemably bad without tha camp element that makes some really bad films actually watchable. I was hoping to push my copy to the brother-out-law because it has sword fights, but apparently even those are atrociously badly executed, so that plan is a no go. I think I am just going to use it as a coaster. The shiny side up.

He is back

Posted by Sari

Jukka is back home (yay!) He was released day early on Saturday, but has had to go back for some blood tests on Sunday and Monday, and wait around for the results. Anybody know any good card games that only two people can play? Watinting around in hospitals gan get very boring. Anyway, his bloodwork was good enough so that they want him back in ten days. Which means that at least he is coping well with the chemo. It'll take while before we know how well it is actually working. He is nauseous and tired and sleeps a lot, but is feeling better day by day.

He has to drink at least four litres of fluids every day so we have pressed my gift-set of hand made weight watcher points fridge-magnets to new use and now they track how much he has drunk. Thanks, Anna :-) It is a good thing he has always been very partial to all kind of sodas, we have now a a huge variety from Mountain Dew to weird local Passion-fruit concoctions waiting at the balcony so he can drink whenever he wants and whatever he wants.

In other news, our grocery store next door has closed down for two weeks as it changes from one chain store to another, so I have been shopping like we did in America: beg a friend or family with a car (thanks Helena, thanks Mom) to take me to a supermarket and buy food to last for a week. I felt quite nostalgic actually designing menus and writing down shoppling lists instead of crossing the street to the store and buying whatever came to mind. And speaking of food, how am I supposed to keep my diet going when Jukka needs high energy food to keep himself going? The nicely color-coced leaflets we got from the hospital also say that he should not do the cooking hmiself, because the smell of food easily adds to the feeling of nausea. So I am in charge of cooking and doing the dishes for the first time since we moved together almost eight years ago. No wonder he is feeling nauseous... He does have pills for it, but for some strange macho reason he hasn't so far taken any of them, just sucks on an ice cube a lot.

It is also a good thing we are movie buffs and that the DVD rental is in walking distance. To start with I just rented the Two Towers DVD, not to see the film but the extreas, which were good. Especially Sean Astin's short film and the making-of documentary of it. And the glimpses of the real Two Towers film they are releasing in November. And the footage from Return of the King. The fangirl in me lives still...

Takaisin kotona

Posted by Jukka

Olen kotona. Sairaanhoitajat miettivät miksi minun pitäisi makailla sairaalan petejä likaamassa, kun voisin yhtä hyvin köllötellä kotona uudella, hienolla petauspatjallamme. Ja käydä sunnuntai ja maanantai-aamuina antamassa verinäytteet ja katsoa mitä arvoja löytyy eli kuinka munuaiset pelaavat. Toivotaan parasta.

Nyt on väsy. Erittäin väsynyt olo ja samalla myös hieman pahoinvoiva. Juomista pitää harrastaa toden teolla, eli päivässä pitää kulua neljä litraa munuaisten kautta pissana pihalle, mutta kun kaikki maistuu aivan sietämättömän pahalta. Nielaisun jälkeen suuhun tulee ellottava, kauhea limakerros, jonka nielaiseminen on melko hankalaa. Syljeskele nyt siinä kotona tai sairaalassa. Jääpalat auttavat, mutta kuinka paljon kylmää mahalaukku kestää?

Päättäväistä mielenhallintaa; ei se niiiin pahaa ole... On se kyllä.

Lienee kuitenkin eka koitos käyty kohta läpi. Aika sipiksi veti. Nyt nukuttaa.