Eating Muffins

Posted by jukkahoo

Home. Don’t you just love to be at home? Isn’t home just the grandest place on this planet? Is there possibly anything as wonderful as home? Don’t tell me. I don’t care, really. I’m at home!!!

And I’m less. A kilo and Then Some (as Bruce Cornelius Willis might say). 1030 grams! That’s a big lump (much appreciate the sentiments – as well as the mentioning on heffalumps: "Mutta minähän olen Nasu!") and I shouldn’t forget them pints of blood they bled from me during the three hour operation. They did give me some back in the following night (that or/and drugs, Snufkin ought to know), when I was half delirious with the bloodloss and the weird concoction that tubes away from the side of my chest. The tube is reddish/yellow and they want me to have it until Tuesday. I have tubes, metallic devices and strange wounds and scras all over my body. I look like a very bad costume of a borg: "Prepare to be assillymated!"

My side hurts. I can’t raise my left arm above my chin. Well… actually I’m not suppose to do that, but I can raise it a bit more, but not that much and it takes quite a while to lower it back down, since some muscle tissues and whatnots don’t really appreciate the motion. Hem.

My Plastic Surgeon Man was a bit worried that he might have broken a nerve whilst surgeoning. He visited me at the hospital and made me do silly moves with my arms ("Eh, this hurts?", "Good, it should.") and finally was satisfied that he hadn’t done anything wronk, since my left… scapula/shoulder blade (?) didn’t do funny things when I straightened my arms in front of me. Since I too considered that to be a Good Thing, we were both relieved. Then I realised I could have sued a Plastic Surgeon for malpractice for gazillions of dollars! But only in America, the Land of the Law-Suit…

The skin (in question) feels weird. It’s very soft, relatively fleshy and quite numb. Until I do something really drastic like stand up or move my left arm or try to turn in bed. Shudder the thought… And then there’s the dreen (?) ie. the tube/container from my side. I have now accidentally pulled it a few times and let me tell you, it ain’t no picnic (hrm, how could it even possibly be a picnic, since it it essentially plastic and mainly tube…?).

It hurts. My roommate managed somehow to wriggle his dreen (while sitting down) around his knee and when he got up, the fleshy part nearly came off. He almost fainted. Good thing the dreen in his case was attached to his head so no vital parts were in danger. Heh, a bit of "dreen" humour there. We dreen-people horse around like that. It must be all those fluids that are seeping out of our bodies. (I have no idea what I’m writing here, must be the drugs, more info available from Snufkin.)

I have to go back to Töölö in Tuesday, so that the blasted dreen gets separated, but I have no idea when I should report back to Ward 7 and Dr. James. I’m having the Monday off (I might even close my cellphone!), but I guess I have to go to Meilahti or call them to see how things will continue. I’m expecting both chemo and radiation, but not too soon (hopefully!). The stiches come off at 13th and Dr. JeeJee (the sixth) said it ought to take about 3-4 weeks for the scar to heal. I’m guessing they will start the chemo a bit earlier but not too early, since if I start reatching with these stiches, I’m gonna fall to pieces. (Snufkin!!!)

If you’re ever given these purple antibiotics, just say no. They might be good for you but boy does your mouth taste weird! It isn’t necessarily a bad taste (I’m certain you, My Dear Reader(s), are as sick as me with my continuous tales of my mouth tasting like raw sewage after chemo/drugs/etc) but it would be nice to be able to actually taste the food/drinks I eat!

I have a new headgear (courtesy of Family Nieminen). It looks like some German enterpre… entropoo… entrop… salesman has come up with a neat idea What to do with all those extra sleaves that shirt factories get when they cut off the sleaves of a shirt and turn it into a T-shirt. Use it as a H.A.D. (Multifunctional Lifestyle Headwear!) I mean hat/headgear. Versatile stuff. I’m still wearing the pirate-look one I made eight hours ago. I don’t know whether I can turn it into a balaclava –  oops! sorry, I meant Sturmhaube or a Saharatuch! I think I can turn it into a Mütze or a Stirnband!

Sometimes Less is More and sometimes…

Posted by Sari

Jukka’s recovery from the operation is going quite well, and he is very glad to be rid of the lump. It weighed over one kilogram, said the JeeJee lookalike surgeon. Jukka might even get home tomorrow or day after tomorrow if they can take the drain out. The wards at Töölö hospital where he is now are larger and the nurses are more busy than at the cancer clinic where he gets his chemo, so he would not mind at all being released early.

I have to admit that this possibility has once again play havoc on my schedule. I had counted on a full week of nursing-free time to do all sorts of domestic chores and other jobs I should have done a month ago. Telescoping the time table lead to very busy Saturday: I have rearranged kitchen to facilitate the new dishwasher (I love my parents, I really do…), done huge amounts of laundry and sorted through all papers in my "pending" tray. Meanwhile my sister was pressed to vacuming and floor-washing duty while our friend Omppu was sorting socks. Now tomorrow I just have to dust the surfaces, do some more laundry, write some book reviews for Tähtivaeltaja, some other reviews for a publisher, and finish three overview-articles on SF-authors for a book and I can start concentrating on my PhD. Yeah, right…

Posted by Sari

Just a quick note to tell you all that Jukka has had his surgery (I again almost wrote "her surgery", I just hate these gender-specific third person singular personal pronouns….), and everything went well. They did not even have to take a skingraft from his back, which should make the recovery easier. I went to see him in the afternoon and he was still pretty croggy from the anesthesia, but otherwise seemed okay. 

I myself am going to try to relax by reading Tom Arden, watching the second season West Wing DVD’s and sleeping in my own bed for the first time in two weeks.

Sairaalassa on toki tylsää joten jos jollakulla on viikonloppuna vapaata niin piipahtakaa piristämässä herraHoota. Hänet löytää Töölön sairaalan viidennestä kerroksesta osastolta 503, huoneesta 2. Vierailuajat olivat muistaakseni 12-18.

Posted by jukkahoo

I learned today that I’ll be going under the knife next week.

I was at the hospital today (and bloody well waited for almost two hours for the plastic surgeon to finally come!) and the future looks very sharp indeedy. This Jeejee Hakala -lookalike (I helloed him, as one does, before realising that this here was ablout two inches taller than Mr. Hakala) looked at my tumor, cleaned the infliction, said "ummhh" and hummm…" and then announced that this here tratment is going nowhere and that I have to be operated soon. 

Which is almost poetic, since an operation was the first treatment I was told I’d be having when everything was only just starting. I am slightly worried, since there really isn’t that many options and treatments after surgery. Only more chemo and radiation (and look where all this took me!).

The problem at the moment is, that the tumor isn’t "melting away" ie. getting any smaller. Apparently it is pretty solid dead cell-block, with some nasty cancer cells in the middle having a ball with no care in the world, since the chemojuices aren’t getting thru the dead layer of cells. Continuing chemo/radiation serves no real purpose at the moment. So, surgery.

I’ll be going back to the hospital in Wednesday to get some MabThera, but I guess they won’t put any chemo’s inside since the surgery is coming soonishly. And I need all the red and white cells I have to get through this next ordeal.

Doctor James has been very helpful (and funny too) and her continuing precence has helped a great deal with all of this. She is very professional and at the same time very open and there. She even asked today how my panel (on fantasy before and after Tolkien) at the Book Fair went.

It went fine. Some even called it really good. Toni said it was better than his panel on New Space Opera. I got to make few points, name names and generally be entertaining/ed (and people came to ma after the panela sking for names and writing them down!). So there! I had a lovely time at the Fair, even if I stayed there for only few hours in Sunday. I got to meet people (some that I haven’t seen since this all begun) and have a wee chat with most of them. I miss mafia’s…

I don’t really know how all of this will continue, but needless to say, either I or my lovely Missus will keep you informed thru the approproate chunnels ie. this here weblog.

Posted by jukkahoo

Kävin tässä aamulla taas sairaalassa otattamassa verikokeita ja tikit poijes. Jostain syystä osa tikeistä jäi paikoilleen(?), vaikka haavat näyttäisivät ihan sulketuneilta. Kävikö vahinko? Luultavasti.

Isompi juttu oli kuitenkin se, että viikonlopun aikana tuumori kävi ärsyyntymään ja kas kummaa, kehitti sellaisen vesikellon, joka on aikas iso ja arka. Peruin viikon sädehoidot ja sain antibiootteja ja rasvasiteitä laitettavaksi kasvaimen päälle. Ilkeän näköinen ja kuten palanut iho (sillä siitähän tästä on kyse) yleensäkin, sitä kutittaa aivan saakelisti!

Viikonloppu oli muuten leppoisa ja mukava; vieraita kävi paljon ja kaukaa. Se on hauskaa. Enemmänkin saa käydä.

Nyt väsyttää. Kirjoitan myöhemmin lisää.

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….

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!