Alien Baby

Well, reality bites, and so do I, which is to say, I can only sustain bits of bytes of the blogging bit, so it all may come in fits and starts.
I’ve been thinking alot lately about when it really began (Marianna not feeling well), after all it does take quite awhile to get to the stage Marianna was at when she was diagnosed. Last year, we were looking back at some photos of us on our 20th anniversary, and we both remembered how Marianna had a sudden weight gain around that time (Winter 2004), and the photos reflect a sort of swollen puffy unwellness. marianna said that she really marked that time as the beginning of her unwellness.
Marianna didn’t begin to really feel sick until November 2005, and had her ultrasound on the 31st of December 2005, which didn’t show anything. By March 2006, Marianna could barely eat, despite appearing to continually gain weight. She couldn’t sit, stand, or lay for very long, which meant constantly moving about trying to get comfortable. Test after test yielded no helpful results, or direction. By May it was apparent that something was seriously wrong, as the rest of Marianna’s body was wasting even as her belly and sometimes her legs grew. In July I began to be able to smell the cancer on Marianna. I know this sounds strange, and yet I had smelt the same smell on both my mother and father, and could now smell it on Marianna. We visited our family doctor together, and he reassurred us that the tests gave no indication of cancer. Just thinking about that time fills me with a sick loathing of our ignorance of the facts. I still feel the panic that comes of knowing something in yourself on a gut level, and being told that it is not true or valid, so that you begin to doubt yourself. It was around this time as well that Marianna and I for the first time in our relationship began to lie to one another. Such was the desire to protect one another, and provide care and comfort, that we began to lie about our fears. To reassure each other, we stilled our paniced hearts, and calmly told one another that everything was going to be okay. Today, I wonder what might have been the outcome if we had run screaming in the streets, crying, ‘FIRE’, HELP, FIRE’. By late July, I could hear fluid in Marianna’s lungs… our doctor was away, so I called the last specialist we had seen. He wouldn’t come to the phone, so we had a truncated conversation through his receptionist. He wouldn’t see Marianna until the results of the CT scan were back ( the appointment was for September 25th), and futher his receptionist informed me that I couldn’t possibly be hearing anything in Marianna’s lungs, because: a) I don’t have a stethascope, b) I don’t know what to listen for, and c) I am not a Doctor. Marianna called the radiology department and asked to be put on the cancellation list, and had to argue for it because they said there wouldn’t be any cancellations. Well, lo’ and behold, they phoned the next day with a date of August 23rd. Marianna was later told at the Cancer Agency that she most likely ‘wouldn’t have made it’ if she had waited for the September appointment.
This is about as much reality I can write for tonight, more later…

Just a note to let you know that I’ve posted a link to Marianna’s memorial site that was created by friend and brother outlaw (Eva), Ramon Vadwa. It has some pictures, more to be added in the future.
Just scroll down to links on the right hand side of the page, and click.
More later…

Wow, I just read over Marianna’s last post and…the Canucks were still in the play-offs, the garden was in full bloom… and life carried on. As I sit here now, the sky is darkening in the morning light with the promise of rain to follow, I have spent the past couple of weeks putting the garden to bed, and preparing the house for winter… and life carries on.
Thinking back to those early days of spring, I think of Marianna in the garden, where she spent every moment she was able. The first round of chemo stopped working by January 2007, so Marianna explored her options and opted to try a experimental trial drug which started in February. this new drug required Marianna to undergo far more tests and therefore appointments, which though they tried Marianna’s patience, increased her optimism about the quality of treatment she was receiving. Marianna’s therory was that the increased attention would improve her overall condition.
It was also around this time that Marianna sought the advice of her Naturopathic Doctor again (as she had before and during her time of diagnosis), and a Doctor of Traditional Chinese Medicine. Both encouraged Marianna to continue with the chemotherapy treatments, beacause of the aggressive nature of the cancer.
I sit here and I think of Marianna in the garden, her head haloed by sunlight, playing with the cats, digging in the dirt, always fascinated with some wonder to show me of her day, when I came home from work. The precious moments are sitting in the cooling evening air sharing the events of the day, and it was in these moments that Marianna began to share in small pieces her wishes for her future, including her death. We couldn’t sustain a lengthy conversation, about death, I don’t know that one really can. I think overall these communications happen in short, still moments between the endearing words of life, at least this is how it was for us. Step by step, we piece together our lives, including ours deaths as well.

Well, it has been a long time since Marianna last posted on this site. And, oh, what a short, beautiful trip it was… as all of you probably know, Marianna died on September 7th 2007 @ 8:15 am.
I feel somehow compelled to write that story here, on her blog, since it was her place to share her experience of living with ovarian cancer aka ‘alien baby’. Perhaps, I will put it out to you, who subscribe, and read ‘Alien Baby’, as to whether I should continue on with the story, or shall it end here. Please let me know…

I had a really rough couple of weeks and thanks to the chemo yesterday, I am starting to feel a bit better. My tumour count after the last treatment went up to 250; it is neither going up or going down dramatically, which can be alright as well, but very frustrating. The water retention was quite high and I did have right leg swelling very bad, but overnight it has gone down alot. The doctor and study nurse are talking about putting in a shunt as it’s getting harder to draw blood and put any type of needle into my veins right now. We’ll try another couple of times then I will seriously think about it; I really don’t want anymore scars on my body and a constant reminder of what I am going through, which is starting to get quite boring, actually. Thank god the weather is warming up; our garden is really coming to life and our tulips and daffodils are blooming. I dug up extra raspberry plants, anise, and garlic and plan to sell the pots to make some extra money; I still have to dig up the poppies, wild geraniums and forget-me-nots. Hopefully I can do that this weekend and put some signs up around the neighborhood. I also plan to seed the sunflowers, peas and corn and get those started. Next week I see my social worker at the Cancer Agency for counselling who I am starting to see; I am finding it quite helpful as my anger is starting to come out, not too much depression any more, but I am getting a bit more impatient. This Sunday I have my first art therapy class at Britannia and then there’s another one in May; they’re one day only but will give me the base of what I would like to do. I should go, Sophie is all over the keyboard and me. Wasn’t that a fabulous game last night; I actually managed to see the winning goal while sleeping in between. Let’s hope they can keep it up!

and I absolutely love that show! It’s good for a laugh or two or more. So, to continue on with my goings-on. I was up at Whistler the week before chemo for five days and Cynthia managed to come up with me for two days at the beginning. We borrowed a friend’s car as the van still doesn’t have heat coming into it. I need to get a couple of more parts and cables, then I’ll have heat, but that’s for later in the season. There was a lot of snow up there, but it was raining on Sunday continuously and finally stopped Monday. We went for a hike and found deer and cougar tracks; needless to say, I did not venture out on my own after Cynthia left. I’m too much of a wimp for that! It snowed very heavy the day after my love left and wished she was there to see it! I began working on a jigsaw puzzle and I was totally immersed in it; it took me two days to finish it off. The picture was of elephants in the savanna with a blue sky. I managed to do some thinking which is why I went for this retreat and I am on the right track and will just keep doing what I have been doing all along. I just need to keep my stress level down which can be a challenge some times. I’m just glad spring is here and hopefully our rain will stop and I can begin working in our garden. This was a long and hard winter for me so I need some good spring and summer weather this year. My kitties are settling down and are enjoying the time I am at home; I saw a beautiful ginger cat today in a house window up the street from us and I, of course, want another one……

Well, I had my third chemo treatment this last Tuesday and what a time we all had (the nurses, myself and Cynthia). Before I get this new infusion, I have to give three viles of blood and then another one 19 minutes into the treatment (the treatment is only 20 minutes long). Well as luck would have it, my veins collapsed everytime the needle went into my hand (the vacuum from the syringe); as a result the backs of both my hands are still sore. Not only did it cause me to have more stress and anxiety I actually started to cry. Thankfully there was a dog on the floor making his rounds visiting patients and I asked Cynthia to make sure he came by; he did and petting him (a labrapoodle) calmed me down a lot. I think all sorts of animals like cats, dogs and rabbits should be on the chemo floor for the patients to pet regardless how they may be feeling. I called today for the result of my tumour count (this is after my second treatment) and it is down to 240 from 260 three weeks ago. This is good news and hopefully this downward trend will continue. I will now go as ‘Ugly Betty is on and I don’t want to miss it!

Well, I had my second new chemo treatment today and I am exhausted; it’s tiring being anxious about what my tumour count is after my new first treatment. My tumour count is at 260 which is actually pretty good; it only went up 10 points (?) so the new medication is working. We just want that number to drop down to 0 if that’s possible. A woman in my support group said today that her tumour count is 4; I only wish and pray mine will get that low with each successive treatment. Just wanted to get this out here……

Well, here we go again; new drug, new treatment. As I mentioned in my last post, my tumour count had risen to 110 (actually it was 120) and then up to 240, so the old treatment was not as effective anymore. I am now on the drug called ‘Patupilone’ which can be found on the Net if one wants additional reading. I’m actually glad I’m on this drug as the side effects aren’t as severe as the other one. The only thing is that I am a bit more tired and don’t have what it takes to do things. I am somewhat conflicted over this as I don’t want to just sit around and do nothing yet, I’m exhausted and don’t have the energy. I did clean up our front yard yesterday though before it started to rain; I was outside for an hour and a half and it was good to get that fresh air. Our front yard looks a lot better; I only have a couple more things to do then I can leave it until I add more plants…The next project is to clean the beds and yard in the back and get it ready for spring and summertime. Anyway, the new drug. I don’t have to take any of the extra drugs as before, such as nausea and steroids, and the treatment is only 20 minutes long. So, I’m at the cancer agency for less than an hour. I still have to go for blood tests and the doctor’s appointment the day before but that’s not so bad anymore. I get another CT scan in April to see if the tumours have shrunk any and if there is any new evidence of cancer reappearing. Also, the study nurse calls me twice a week to see how I am doing and what symptoms I am having; there is also a quality of life questionnaire I fill out once a week. So, this is what is happening in my life right now. I am quite optimistic about this treatment and hopefully this will beat the cancer into remission. There is one other woman in BC receiving this drug and it is proving to be very effective so let’s keep our fingers crossed. Until next time and do drop a line. I love to hear from all of you.

Well, here we are in January 2007 and I haven’t written anything for quite a while. Actually, someone asked me the other day if I had written anything. So here I am. Much has happened since my last post; Cynthia and I went to Hawaii in November for a week which was fantastic. We were there over Cynthia’s birthday and we enjoyed her day by snorkeling and then having a fabulous Thai dinner at a restaurant not far from our hotel. The weather was fabulous with lots of sunshine and heat. I did have some trouble with swelling of my legs over the course of the trip but at night I would have my feet up and that helped. We came back to a very rainy and windy mid-November and were quite shocked at all the downed branches and trees around the city. We collected the branches for use as kindling for our fireplace and managed to get some bigger pieces but not much and of course we wouldn’t think of taking any wood from Stanley Park. We had a fabulous Christmas with lots to eat, drink and of course the presents. I was still undergoing chemotherapy and hoping that all was going well. Between Christmas and New Years I had chemo and found out that my tumour count had risen by about 23 points. We thought that my system was fluctuating so didn’t get into a panic. This last time, before chemo, my tumour count had risen again by about 30 to 110. I didn’t get my chemo this time as I am now going into a study to test two new stronger drugs. One of the drugs is approved and used in all of Canada except BC; this drug has minimal side effects and is very effective. I don’t know about the other drug. This is a random study so I could end up getting one or the other. The good thing is that I will be so closely monitored, the care team will know what I ate 1 day previously. I will get blood taken every week, a CT scan every 2 months, a call from the nurse twice a week, a heart test and, a bunch of other stuff. I read the consent forms and even though it looks overwhelming I am quite positive about it, scared yet positive. We didn’t want to hear this news and it feels as if something is thrown in to set me back yet I will not give in or give up. Cynthia and I were outside yesterday cleaning up the side of our house and it felt great. I can’t wait until Spring arrives so I can weed the gardens, trim the lawns and replant two trees we acquired over the winter season. I got Cynthia a blooming dogwood tree for her birthday and she got me a little live christmas tree; we have the planters to put them in as they will be moving-around trees. I wanted to do some additional cleaning up outside today but it’s still foggy and somewhat damp. When it gets sunny I will go out and finish up. This is what relaxes me, being outdoors in nature with Cynthia and hearing the birds singing their hearts out, with our kitties sitting close by.

As promised in my last post, I would be sharing the details of my ‘baby’ however, before I do, I want to start from the beginning of how this all began. Last October 14, 2005, Cynthia and I went to Hawaii for ten days; it was such a beautiful trip that we are planning on going again perhaps in February when my chemo is finished. It has been suggested I don’t travel long distances until then which is fine with me. Anyway, we came back all tanned and refreshed having spent our days snorkeling, tanning and just being with one another. The following month, November 2005, Cynthia and I and Deirdre (Cynthia’s sister) went to see cousin Patty-Jo in Vancouver, Washington for American Thanksgiving and to take advantage of the after-Thanksgiving sales. While there I began noticing I couldn’t eat very much and that my belly was swelling up every time I ate. Approximately three weeks later I went to my doctor and had bloodtests taken; I also mentioned my symptoms to my homeopathic doctor who gave me some of his potions. He felt I may have picked something up in Hawaii. Being the Christmas season, one can imagine my sadness at not having being able to eat like a little piglet. On December 31, 2005 I went in for an ultrasound specifically for my ovaries. I was also quite sick with a cold I managed to pick up somewhere along the way. I got my test results the next week which were negative. Work during this time was beginning to get unbearable. I was taken out of my regular position as a legal intake clerk and put into a clerk position which I did not like; my duties pretty much consisted of answering the phone, writing form letters and listen to two colleagues fight with one another on a consistent basis. As I was shop steward I guess they figured I would listen to their goings-on with interest. I didn’t. In the beginning of February I lost a week of work as I could barely move. I woke up to a pain in my left side which literally left me breathless. Everytime I moved I had this sharp stabbing pain. Not paying attention I would simply lie in bed for a day, and take four days to recover. At the same time, my belly was getting a bit bigger and my digestion was beginning to wreak havoc on me. While receiving chiropractic and massage therapy appointments I was noticing that it was getting harder to lie on my stomach and I also felt something hard. I didn’t really pay much attention to it, just thought how strange. In the end of February, Cynthia and I went to Seattle to celebrate our 22nd year anniversary together for the weekend. Before we left I again went to see my doctor as I we both decided I would have a stomach barium test done; I had to call after the weekend to find out when. I don’t know when exactly the test was done, the only thing I do know is that I had to wait for about another month and a half. During this time I saw my homeopathic doctor again who did a blood test. He showed me the slide and the cells had small bumps on them; he explained that it was probably parasites so he gave me more potions for parasites, bloating and upset stomach. At the end of March I again missed work as a result of the sharp stabbing pain in my side, only this time the pain was on the right side. Finally, on April 5 I had my upper GI tract barium test. I decided to take the whole day off as I had to take laxatives the night before. Well, work being work accused me of taking the morning off because it was a sunny day! So, I explained in detail to my supervisor why I couldn’t come into work the previous morning. She had the audacity to say she didn’t want to know details. Too bad! She was getting them! Two days later I saw Dr Ron (my doctor which is how I will refer to him) and my test results were negative. I again went in for blood tests which turned out to be negative, just a bit low in iron. I was now wearing larger pants, having indigestion more and more and my belly was more distended. It was getting more and more uncomfortable getting massage and chiropractic treatment. I decided on April 7 to go on medical leave as I wanted to get to the bottom of my problems. It was suggested it was work-related stress, irritable bowel syndrome and not knowing as well. So here it was, end of April and we still haven’t a clue what was going on. Even though I was wearing a larger size of pants, I was losing weight where I was beginning to get thinner. I was resting at home dealing with the bigger stomach and not being able to eat as many foods as I once was able to and thought that maybe it was stress. I kept seeing Dr. Ron at least every other week with my symptomology getting worse and I kept going in for bloodtests which showed the same thing, low in iron. We then decided to go see an Internist and again I had to wait until mid-July. On Monday, July 24, 2006 at 2:30 pm with Cynthia at my side, we went to see the Internist who I will not name, to find out what may be wrong with me. He did a couple of in-office tests, told me to get some natural things for digestion and we decided I would get a CT scan and get my ovaries checked out. He said he didn’t think there was anything wrong with them, but it was a process of elimination. I had to wait a week before I found out when the CT scan was to happen. I asked to be put on the cancellation list when I was told that the list was too long. I insisted so I was put on the list. The next day I got the call that I could have the scan on August 22, 2006. So here we are, my symptomology is getting worse and I still have to wait a month for the test! By this time I was getting thinner and thinner, my ability to eat food was quite limited and I was beginning to down Advil at least four times a day, two at a time. I could barely fit into anything, my belly was so distended I looked pregnant and my mood wasn’t all that great either. My doctor was away on vacation from mid-July to mid-August. While Dr. Ron was away, I called the internest as I was quite worried as to how I was feeling. His secretary called me back and said that he would see me two weeks after the results of my CT scan. Nobody was listening to me or taking my symptomology seriously. I was beginning to cry. On Thursday, August 17 I went to see Dr. Ron (his first day back from vacation) as my left leg was very swollen and I had trouble breathing. In fact I had been having trouble breathing for about two weeks and it felt like I had water in my throat. I thought I had cat allergies. I went to get a chest x-ray where I was told by Dr. Ron on the phone that there was water in my lungs and the x-ray technicians couldn’t see where it was coming from. I was to see Dr. Ron the next morning. I went to see him and he saw how swollen my leg was. He called the internest who I guess, also told him he would see what happened after the CT. I was also to go to the ER after my scan. Dr. Ron called me each day over the weekend to see how I was doing and if my breathing got any worse I was to go to ER. On Saturday, August 19, 2006 Cynthia and I went to the PNE as it was opening day and I wanted to see the animals before too many people had harrassed them. I also had a feeling that I would not be able to go later in the two weeks. We had such a good time! We had the small mini doughnuts to nibble on, saw a llama judging contest, a rabbit judging contest and of course the Showroom Building. We managed to walk home even though my groin was just stabbing at me and my leg was swollen. On Tuesday, August 22, 2006 at 1:00 pm I had my CT scan and went to VGH emergency immediately afterwards. I was feeling quite bad and I still had to drive from UBC to VGH. I got admitted and I was told five hours later of my diagnosis. This is the story from the beginning. It is maddening and sad all at the same time. I should mention that the original date for the CT Scan was set for September 19, 2006 and the Internist appointment on October 2nd, 2006. I am grateful for that cancellation and the fact that I am here today writing this. I hope that other women do not go through what I did and have to wait so long for a diagnosis, any diagnosis.

Hello again. It has been a long time since I last wrote; after my last chemo treatment while I was in hospital. I last described what I had for dinner that night. Well, the next morning I was preparing myself mentally for the chemo which was alright. I looked at it as a healing process thus was not too worried. The nurse and I had a good chat regarding the processes involved and any reactions I may get. She stayed with me for about an hour and we talked about all sorts of things. I faced my fear and it went well. I got quite tired as a result of the Benadryl I was given for any allergic reactions I may get. My treatment started at 12:45 pm and ended at 5:15 pm. I managed to eat dinner, what it was I don’t recall. I stayed in hospital until Monday afternoon after which I got to go home and be with my partner and our cat. I felt the symptomology on the second day after chemo which consisted of joint aches and pains and some nausea. After that I was alright and by the second week I started venturing out into the world. We took the bus downtown and had lunch at the Bay and came home; the whole trip was about 3 hours long. The second excursion was to the Vancouver Aquarium where we stayed for about 4 hours - I also drove which was a fabulous adventure. This last week we went to Victoria for three days and stayed near downtown - again I drove which was great! We had breakfast at the James Bay Tea Room and did some shopping. We pretty much took it easy but what a trip! We had to come early on the ferry as I had to see my oncologist before my chemo yesterday. Everything is healing fine and my blood tests are pretty much normal - just my white cell blood count is a bit low. I managed to get my records so I was able to see my blood test results, and also just how big and what the tumour looked like. I will give those details in the next while. I will be writing more so please be patient and please, do write comments, criticisms, etc.

Well, I did find out my prognosis last Friday and was promptly admitted to the BC Cancer Agency. Let me explain. I walked into the building and was already feeling anxious and wondering which direction my life was taking. Filled out a couple of forms and proceeded to have some blood taken. After that I had to go up one floor and see the oncologist I was to meet; on the way up I started crying. I was shown to a room, got into a gown and waited for the doctor’s assistant who is also an assistant. After giving another life history and being examined yet again, the oncologist came in and we started chatting. The prognosis is good; I don’t have to dig my grave at such an early age. Hurrah!!! Because I was feeling so lousy I was admitted so that I could begin chemotherapy right away; I had no problem with that as I just wanted to start feeling better. I was admitted to Ward 5 East, Room 504; I had another great view of the city and it was a private room. For dinner that night I had wild dilled salmon with potatoes and green beens; I didn’t think I would have a problem with food while being there.

It is today that my host finds out what the pathology of me is. She also finds out how much chemo and how long her treatments will be. I guess that will be the end of me. My host will start writing here after this afternoon; I had so much more to say but alas I wasn’t allowed. She has a lot of determination and positivity in her life it makes me ill. She wants a picture of me though, I guess to put here or for her to brag about how she got rid of me. So, this is the end of me…and the start of a new person.

Hello Folks. It is I, Alien Baby. I’ve been a bit busy of late consuming my host, hence no blog entries.
I’m really feeling much better now that I am out and about reeking havoc in the big bad world. I’ll write more later, tonight I just wanted to get something, anything out there, to get started.