In early April, my 32-year-old American cousin who is earning her Ph.D. in Toronto was diagnosed with cancer of the bowel. As terrifying as her life has become, she nonetheless is keeping a journal online for family and friends about her experience. I asked her if I could share entries here on DailyKos because I think it is important that we Americans understand what we’re missing by rejecting single-payer nationalized health insurance. My cousin said yes.
THURSDAY, APRIL 10, 2008 10:40 AM, CDT
I will be brief in bringing everyone up to speed.
I have been diagnosed with bowel cancer. I am very young to have this, but doctors are treating it very aggressively and I have nothing but absolute certainty that I will survive this.
Please read on...
My treatment course is complicated. I am to receive pre-operative radiation that will vastly improve the success of both the removal operation and subsequent chemotherapies. Because of the location of the tumor, the radiation will destroy any ability I have to have a biological child. Therefore, due to a miracle of timing, we have a window in which we are able to harvest some eggs, inseminate them, and freeze the embryos to preserve them until such time that I am cured and that we may find a surrogate womb.
I am currently undergoing the fertility treatment course for the next ten to fourteen days, at which point my eggs will be harvested and inseminated with a process called ICSI. Because I am preserving assumed fertility due to cancer, much of the enormous cost of this has been waived.
A few days after the egg retrieval, I will enter the hospital to have a laproscopic ileostomy to divert my digestion out of the large intestine so that I may eat normally again without worrying about the tumor. This will also reduce the negative effects of the radiation treatment as I will not be using the radiated tissues. After a few days during which I will recover in the hospital, the radiation treatments will begin for five to six weeks. There will be another period of four to six weeks while the radiation continues to shrink the tumor without further application.
Then, the major removal surgery will occur where the diseased section of bowel will be removed and the healthy bowel reattached. Depending on my condition, the ileostomy may be removed at this time. After this, I am to undergo chemotherapy for six months.
Of course, this course of treatment could be altered at any time. I am scheduled for an MRI and if that finds additional cancers, then I will need other procedures.
FRIDAY, APRIL 11, 2008 01:19 PM, CDT
No major news today. [BOYFRIEND] provided a 'sample' for the fertility clinic, and his half of the baby-machine has checked out with flying colors. I am continuing the hormonal treatments with my morning injections. The hardest part right now is keeping my digestion flowing until the ileostomy. It is a struggle between getting enough protein and calories, and moving matter through my system.
A special thank you to [DOCTOR] for helping me get home today. It made my day so much easier.
SUNDAY, APRIL 13, 2008 10:21 AM, CDT
I went in for my ultrasound this morning to check on the size of the ovarian follicles being created by the hormone injections I am getting. Things are progressing well and slightly ahead of schedule. I'm starting the second type of hormone to slow down the production, so in addition to my morning injection, I have an 8 pm injection as well. The fertility doctor estimates that the eggs can be harvested on Friday or Saturday, which is good news. The sooner the better.
He is hoping to get 4-6 embryos. This is not a large number, giving us only a couple of shots at implantation, but perhaps I will get lucky and we will get more. Positive thinking, all. Normally, we would have many months of fine-tuning the process to get as many eggs and embryos as possible, but the time just isn't there, so we are all taking our best shot. Things are good so far.
A special thank you to [FRIEND] for helping my mother with her passport issues. Mom will be up here on Thursday to help with the recovery from the procedures I will go through in the next 10 days.
I love all of you.
MONDAY, APRIL 14, 2008 01:46 PM, CDT
I had my pre-op appointment today, but I did not do well in it. [BOYFRIEND] did not go with me, but I thought I would be all right, and I thought he would need the sleep.
They went over the procedure, but about halfway through, I just got so lightheaded. I think I cannot mentally deal with knowing what they are going to do, and I do not want to know. It does not matter to me. It has to be done and I trust them to do what is needed.
I spoke to an intern and a resident, after nearly fainting, and all I could do was lie in this terribly cold room and shiver from three hours. They piled blankets on me, but my blood sugar fell and I felt miserable. I also felt horrible about having cancer and it was very hard to push through.
However, everyone is taking great care of me, and everyone is tender and caring. I know they will all do their best. I just need to get some calories into me and I think I'll perk up. I just keep telling myself that I can make it through.
Also, the fertility treatment is awful. I don't even know myself anymore. Lots of needles, bruising... it is like a pre-torture to everything else. I just force myself to take one hurdle at a time.
TUESDAY, APRIL 15, 2008 10:07 AM, CDT
I had another ultrasound this morning. Everything is going well with the fertility treatments. The egg harvest will be done Friday or Saturday - aiming for Friday. I have to go in again tomorrow morning. You would think they would let a sick person sleep more, but the fertility stuff is always at 7:45 am, downtown, so I have to get up at 6 am. Awful. At least the second shot last night was not so bad. I did not react as badly to it.
I am doing better today, just trying to keep my mind off things. I often feel better when I don't have to go down to the hospital to get new information.
WEDNESDAY, APRIL 16, 2008 05:03 PM, CDT
I spent all day at the hospital. I had another ultrasound for the fertility. The egg harvest will be done on Friday morning at 7 am. My mother will be here tomorrow afternoon, and I am grateful she will be here when we create life, a glittering star in this dark tragedy. I bought too many doses of a particular fertility medicine, but I am going to donate it to the clinic, so if they have another patient like me, then she will not have to worry about money. It is the least I can return.
I spoke to the chemotherapy group and they ran me through all of the twists and turns of that aspect of the treatment. I will be taking an oral chemotherapy during the radiation. it has beautiful side effects. Still, I just have to remember that it is part of the healing, I will tell myself that daily. I will paint it on the ceiling, so that if I cannot get out of bed, I can remember that mantra.
I also saw my psychiatrist today. It was nice to talk to someone about how I really feel who was not emotionally bound to me. I feel I have to be strong for everyone. I know that is silly, but that is just the way I am. I was raised to be a southern woman - a steel magnolia - and I can't be any other way. I was basically all right until she asked me about America and how I feel about being in the medical system up here in Canada. I just completely broke down. I said that when I was growing up, my father would tell me how lucky I was to be an American because I would never be hungry or not have fresh water, and that America did such great things and we were all safe. To think that a country so great, as great as any country has ever been... a country that can win two wars on land, sea and air, a country that can put a man on the moon or send probes into deep space, a country that inspires people, shelters them, and gives them opportunity... that this country cannot provide for its weak, its sick, its infirm - this is the blackest of marks. How should a country measure its greatness - by what it can do by its power, might and majesty, or by what it does for the least of its denizens?
I told the doctor that I wanted to embrace all of Canada, that I could never repay this nation for what it is doing for me, for me, a poor student who is not even of its citizenry. And how terrible I feel that the land of my birth that has been the gateway to liberty for so many millions, would not do the same. Truly, what is the measure of greatness?
Please, support universal health care in America. I am proof that anyone, anytime, can fall victim to a catastrophic, life-threatening illness. I am but one person, a lesser one at that, but have we not all the right to life?
THURSDAY, APRIL 17, 2008 01:25 PM, CDT
Last appointment at the fertility clinic today. No more injections! I donated an extra dose of hormones I bought to other women going through this sort of thing. It felt good to give back a little.
Egg harvest will happen tomorrow morning around 10 am EDT on April 18th. Within 24 hours of the one year anniversary of my father's death, I will become a mother, in a strange, science fiction sort of way. At least, that will be the happiest outcome. Not all the eggs drawn will be mature enough, but if we can get 3, maybe 5 embryos, that would be great. We might only get one. Still, something is better than nothing.
I also saw ambulatory medicine for some more pre-op stuff. My blood checked out okay, so there should not be any bleeding issues during the operations.
One day at a time.
FRIDAY, APRIL 18, 2008 06:06 PM, CDT
Mom arrived safely yesterday and we all went down to the hospital for a 7:00 am appointment ([BOYFRIEND] was not happy). I got stripped and into a hospital gown. I got an IV - not the most painful I've had, but IVs just suck left and right.
I then got a little pill to help me relax. It did a pretty good job with that. Then, I got some morphine. That really helped me relax. I vaguely remember being taken into the treatment room, but I don't remember how I got there. I guess I walked, I don't know. I remember being told to scoot forward repeatedly, which I did. I heard all of what the doctor was saying, and I felt my mother holding my hand the whole time. But there must have been six or seven people in there. Definitely five, all in a circle.
Boy was this not a fun procedure. It hurt, though not a lot, but it was an invasive hurt, if that makes sense. It hurt on a much more internal level than just getting a shot. I could actually feel those follicles being drained.
Thankfully, it does not last long and they were able to retrieve 10 eggs. Now, they are messing with all of the genetic material we have given them and they are trying to make as many babies as possible. I hope we will find out tomorrow what our success rate is.
I apologize for spelling errors or mistoughts. I am still wigged out on morphine.
SATURDAY, APRIL 19, 2008 04:01 PM, CDT
On today, the one year anniversary of my father's death, we received a call from the IVF unit to tell us that of the 10 harvested eggs, 9 of them fertilized successfully. This was amazing news to us, for we were told even getting one embryo would be a success. We are very happy for this news and hopefully the nine will continue to grow well until the point they are frozen. We also hope they will not turn into dark riders.
It is not every day one can say they have beget nine children. I am happy for this, though I wish bringing them forth could be in my power alone. Alas.
Not feeling terribly well today after the procedure, but taking things slowly and resting a lot.
SUNDAY, APRIL 20, 2008 01:48 PM, CDT
Hard day today. Woke up with a fever, so we are monitoring that. If it gets too high, I will need to go to emergency. I hope we can get the fever down. I don't want to go to the hospital. Any time I can be out of it is good time.
SUNDAY, APRIL 20, 2008 03:42 PM, CDT
All nine embryos are well. My fever has come down, but we are still watching it carefully.
MONDAY, APRIL 21, 2008 03:56 PM, CDT
All nine embryos were frozen today, so they are going to wait for me to get well and for us to find a surrogate mother in the future.
My first surgery is scheduled for this Wednesday at 2 pm. I will probably be up to having guests by Friday afternoon, certainly the weekend, and definitely by Monday, if anyone in Toronto cares to drop by and say hi.
They have decided not to move my ovaries after all because the tumor is too close to the uterus and the surgeon is afraid of disrupting it, so I will need to be on hormone replacement for the next thirty years or so. A small price. I told them whatever was best for my survival is what I will do. The operation will be less traumatic for me this way as well.
Think positive thoughts for me Wednesday afternoon.
WEDNESDAY, APRIL 23, 2008 07:33 AM, CDT
It is a few hours before I leave for [SURGERY]. I am nervous, but I just keep telling myself that I am in the best hands and that everything will be all right. I am very hungry and thirsty and I eagerly look forward to a time when I can eat again, though that is a few days off.
This is all extremely difficult, but I must persevere. I must be strong and at peace with what must happen to me. The only other option is to die, and I am not willing to do that.
I know I will be fine and that the best people are helping me. Please keep me in your thoughts if you can.
SUNDAY, APRIL 27, 2008 10:49 AM, CDT
I found some internet at the hospital, but this will be brief. I am on some solid foods today, but I am taking it slowly because the doctors are still concerned about gas buildup in my system. They inserted a cathater into the stoma to help relieve some of it. My hemogloben has also dropped really low, probably because I haven't been getting any iron at all, so they will do a hemogloben transfusion today. There is a slight risk of a reaction, but it should be fine.
Thank you to [FRIENDS] for the gifts, the flowers, and the company last night. It really cheered me up. Just a little more time now and I hope to be back to my old self again.
Thank you all for keeping me in your thoughts and prayers.
SUNDAY, APRIL 27, 2008 07:57 PM, CDT
Another quick update:
The cathater placed in my stoma did not last long. The stoma decided it would have none of it and that thing was out in less than two hours. No ill effects though and I've been eating just fine. It has been great to be able to eat again. I feel like I have not really, REALLY eaten for a very long time.
The blood transfusion also went well, though I am not used to having so much hemoglobin. I am slowly adjusting. I thought I would feel all energetic, but not really. Still, I feel very much more myself, and I am certainly less cranky than I was.
I do not know if I will go home tomorrow or if they will keep me one more day. Aside from getting stuck with a needle every eight hours, it really isn't so bad being here. I have my routine and my environment. Going home will be an adjustment because I will have to make a new routine there. I will adjust soon though. Just big changes to go through.
Thank you to [FRIEND] for coming by and giving me communion and prayer. Also thank you to [FRIEND] for keeping me company and keeping my mind off things, and thank you to [FRIEND] for playing games with me, but I do not thank him for beating me so badly. I'll blame it on the new blood - it doesn't know how to play Race for the Galaxy yet.
MONDAY, APRIL 28, 2008 08:03 AM, CDT
Today is my last day in the hospital. I'll leave probably early tomorrow. I am looking forward to breakfast! Anyone who wishes to visit, the hours are from 2 pm to 8 pm, otherwise you are always welcome to see me at my apartment after Tuesday afternoon. I will probably remain resting there for a few more days, then, hopefully, I can start to go out and about and live life for a little while - until they lather, rinse, and repeat all of this on me.
My cousin is home at her apartment in Toronto now, recovering from her first surgery. Next, she will undergo chemotherapy, radiation and more surgeries.
I will keep this community updated if there is interest and it's OK with my cousin. I know she cares deeply about the American health care system's failure.
All of the emphasis above is mine. I've redacted names of people.
Please imagine what would happen to a "poor student" in the United States in the same circumstances. Thank God she is in Canada.