I am exhausted. I woke up every 2 hours last night and it was supremely annoying. Part of the problem is that I was hungry which has not happened in a while. I always say to myself in the morning that I should just get up and eat something but I never seem to manage to just do it.
I am excited about Joe coming to visit for a couple of days. We will have a good time!
I didn’t post yesterday. I meant to post, I even took a picture. So, today you get yesterday’s picture and today’s content. What a rebel!
One of my treatments had been reduced by 20% because my neutrophils were low.1 I thought it would be that one treatment that was reduced but one of the nurses told me that was not the case. All of my treatments since have also been 20% less. I had surmised from the beginning that I was going to have trouble with chemo. After 13 years of ulcerative colitis, I knew that my body was weakened. I had been taking immune suppressant drugs2 to keep my ulcerative colitis under control. I already had low hemoglobin – in fact I don’t think it had been over 100 in a long time. Everything else was also somewhat low. I had wanted to stop taking it but no one would make a decision – so I continued on.
Now that I am getting close to the end of my 3 months of Taxol, I will have another CT scan. I am not confident that the chemo has done much for my lungs. Although, it could be the air quality again. I am still having some difficulty breathing but I do have asthma. So, I really have no clue. The Oncologist™ has acquiesced and said I can have my hand surgery 3 weeks after my last dose of Taxol. Luckily, the surgeon’s office has been incredibly flexible and scheduled it for the very next day. If I decide to do more chemo, at least I won’t have to wait.
The Oncologist™ has indicated that another round does not have to include dexamethazone which makes me very angry and sick. I don’t do well with steroids. So, if we can come to some kind of detente about that drug and me not having to take it, I may do some more chemo. Even if my goal is only to be able to stay alive long enough for my hand to heal and to be able to crochet again, that would be enough of a motivation to do another round of chemo.
I have to say that the life of a cancer patient can become very small very quickly. Right now, every day feels like the weekend except for Monday and Tuesday when I go for blood work and chemo. I have also noted that for the last couple of weeks, those have been the hottest days of the week. I think the world knows how much I hate heat and that’s why this happens to me. I tend to take such things personally. Right now my life consists of sleeping, eating3, sleeping again4, trying to eat again and going to bed. I’d like to do more but it just doesn’t seem to happen. I am far too tired. I am grateful for sleep.
Hopefully, most days are ok, although only about ½-⅔ of what I might ordinarily eat. ↩︎
Well, I call it sleeping. It’s not so much sleeping as it is deep relaxation. Maybe even meditation. I have my noise cancelling headphones, music and an eye mask. I recline in my chair and relax, hard. I think of nothing but the music. I have no idea what I would do without the music. ↩︎
The last two mornings, I have woken up both profoundly sad and angry. Yesterday was sad, very sad. And the tears flowed when I got a very nice note from someone in my life. Kindness always makes it worse. I am not sure why it is but I can usually hold it together until the kindness comes out. Then the tears flow.
I move between not believing this is all true to seeing the port in my chest and knowing I am going to die. I can’t help but think about how unfair it is for me to have cancer. Deb and I have always thought that we’ve paid our dues medically speaking1 and we should be allowed to just glide into old age relatively gracefully. After meeting both of my bio parents, I figured I would make it into my 70s at least. And now, at 53, I have terminal cancer.
Then other things enter my mind. Given that our medical system is so strapped for cash, why do they even offer chemo to palliative patients? It really doesn’t make much sense when you think about it to give patients medications that are only going to prolong their lives while at at the same time causing side effects that then require more treatment. Behind all of these thoughts is why me? What did I do to deserve this? Even though I know that there is no rational reason for this to have happened to me – it just did.2
I have been so miserable the last couple of days to Deb. She really can’t say anything without me coming back with some retort (some nasty for sure). I wish I could stop myself but I’ve not been able to thus far. The worst time is the morning. I have always been bitchy in the morning, now it’s magnified.
And honestly the biggest fuck you of all of his is that I had to get cancer in the summer. I hate the summer and I have had to be out in the heat at least twice a week with temperatures over 25 degrees most days. Yup, that’s the real kicker.
One of the first questions people ask when faced with a diagnosis of a terminal disease is ‘why me?’ Rationalizing that they are good people they can’t imagine what they could or couldn’t have done to deserve death. Did they walk by too many homeless people and not help? Were they mean and short with their children way too many times? Did they cheat on their spouses. Honestly, the list goes on.
Here’s the thing, there is nothing we did or didn’t do to get a terminal illness. Everyone is going to die. Some of us are going to do it a lot sooner than we had anticipated.
In my case, I had finally reached the place where I was going to be free to live my dreams. I knew what I wanted to do, I had the resources and the abilities. When I first found out I had cancer, I thought, well fuck. I was going to do surgery and chemo and then use that experience in my life coaching practice. For about 2 weeks, I was sad but not too sad. I went to see a surgeon and finally The Oncologist™. The surgeon thought there might be an element of inflammatory breast cancer so she sent me to an The Oncologist™. He seemed to think it had not likely spread. He told me treatment would be hard – a year of chemo and then surgery. But I had to have 2 scans first.1 They found tumours in my lungs. Too many really to count but at least 15 in each lung.
I was devastated. But I didn’t think I deserved any special dispensation because I had been a good person. Even though I had done everything that had been expected of me did not mean that I had a free pass. I raged that it was fucking unfair but none of it really mattered. All crying and getting upset did was make more tired.
So, here I sit. I have 5 more treatments of Taxol left. Some people have told me that I will feel different about things once I get my first scan results back. Do they mean that I will be willing to do more chemo to chase more life? And to what end? Colitis and chemo side effects mean that I can never be far from a toilet. The size of my body2 has always meant that I can’t really go most places because I have trouble long distances and I don’t really fit. I could do it to have more time to spend with my loved ones but that just means more appointments and time. The outcome does not change. It would seem that I lost the crapshoot.
I walked out of the bone scan knowing everything was fine. I could tell because they told me it would be 40 minutes and it was only 20. The CT on the other hand was not the same. They came out and re-positioned me. I knew then that they had found something. ↩︎
In spite of everything I have ever done has never mattered when it came to my size. ↩︎
There are really no words for how you react when you are told you have a terminal illness. Perhaps this is why The Oncologist™ was so blunt. I remember him saying “your cancer is not curable.” He drove home the point that anything they did for me, in terms of chemotherapy etc., was palliative. I was palliative. A month ago, I was planning the next part of my career after taking a couple of months off. Now my world consists of chemo and blood work appointments, scans, and lots of time spent in the bathroom.
Death is not something of which I am afraid. I am afraid of pain1. I don’t want to struggle to breathe like my mother did. I never thought I would get a diagnosis like this so young but I guess it really all just is a crap shoot. As an adoptee, I really have no idea of my genetic background. Even though I have met both of my parents, I still can’t be sure that they have given me all the information.2
There are women out there who have been living with this disease for many, many years. They do many rounds of chemo and radiation all to buy them a little extra time. I am happy that we all have our choices to make. I am in awe of their courage and strength. Even as I read some of their stories, I knew I would not join their ranks. Don’t get me wrong, I love my family and friends but I am not prepared to continue on too long doing palliative treatment. I simply don’t see the point.
When I went for my appointment on Tuesday, The Oncologist™ told my I could skip that week given that I had been suffering with ongoing diarrhea for 4 days. My understanding of chemo was that missing a treatment was a really bad thing. When my step-dad had leukaemia, they watched his blood work very carefully to make sure he would be able to get his treatment. The Oncologist™ said “they were probably trying to cure him.” That statement really hit home for me. They were not trying to cure me so I could miss a week. I went ahead anyway, honestly, I just want to get this over with so I can make the next set of plans.
I am really suffering with side effects from the chemo. I have had non-stop diarrhea for going on 5 days now. This can be quite dangerous as you start to lose electrolytes. At least I was able to eat breakfast today. I will be breaking out the gatorade shortly.
The day after a long weekend is absolutely brutal for chemo. I have to be at the hospital by 8:30 to get bloodworm done. Because I have a port (not complaining), my blood draw has to be done by an RN. Unfortunately, today there was only one RN on for 8 of us who needed draws. That clinic is absolutely amazing. It runs like a well-oiled machine and everyone is patient.
For me, it means I don’t get enough sleep. I slept when I got back from the blood draw and then again when I got home from chemo. The diarrhea is still going. I am pretty sure we are at 4 days and 4 nights. I hope if stops really soon.
They were able to deal with my port site. They used a gel that protected the skin and it looks fine – as in no worse and it didn’t hurt.