Thanks

I can’t believe how nice people are. I had someone bake me muffins and leave them on my dining room table for when I came home one night. People are giving hugs, sending nice e-mails, and letting me know that they’re here for me. I’d like to thank everyone for that.

My mom is in a lot of pain. She’s still in the hospital, mainly because they still haven’t figured out the correct dose on which she is without pain. At one point, she was curled up in the fetal position and unable to speak because the pain was so bad. I can tell how bad her pain is because she will become much less animated when it hits and need to lay down. When it’s really bad, she stops speaking altogether and lies down with her hands clasped in one another, fingers wedges between each other, resting on her chest. She also refuses to eat or pretty much function when it’s bad.

It’s hard to see it, because it’s such a huge change from her normal state. When the pain meds take effect, she is a completely different person. It’s like she was sedated and now has woken up and is full of life again.

My mom began a new round of radiation treatments 2 days ago, and hopefully these will shrink the tumors enough to eliminate her pain and difficulty walking. The treatment is on an area that’s had the lifetime dose before, so I’m always scared of side effects and what will be. Still, I don’t like to worry about things I can’t control. Right now, I’m trying to be there for her and for my family as much as I can. It’s school, hospital, school, nap, hospital, sleep, rinse, and repeat. I feel a bit drained, especially with an exam coming up in 2 days, but I know I will pass so I just plod on.

My mom was actually supposed to be released from the hospital today, but she had lots of pain and little sleep last night, so she will have to remain there at least another day so that the pain meds are corrected. She was extremely disappointed about this, and I know she must really want to just be a home in her own bed. She is also very concerned about how much time and effort her family is spending by coming to the hospital, but I keep telling her to stop worrying about us. We are there to support her, and gladly so.

Here’s hoping that she can go home tomorrow, and that I do well on my exam. Thanks again to everyone who has been sending good wishes to my mom and cheering me up.

More About Mom

10/23

Right after I wrote the last entry, she fell in the bathroom because of weakness in her legs from the metastases. My sister gave her steroids which reduce inflammation, and she has been doing relatively well since, though pain medications are a must and there are side-effects of all these medications.

We went to Sloan today after a few days of no hospitalization, and it seems like the doctors want to irradiate C6 and T11 instead of do surgery. There have been lifetime doses to those areas, but they think they can pull off a bit more, especially because the radiation treatments worked so well before.

I can tell that my mom is sick of all of the treatment. She is sick of always traveling, sick of all of the medications she has to remember to take, sick of all of the side effects, sick of all of the doctors and hospital stays. She also hates that it’s affecting her family and that we have to sit by her, but I keep telling her we’re happy to do it and we are there for her.

It almost feels like we’re patching stuff up as we find problems rather than solving them. We were supposed to go to Boston this past weekend to see into which study (studies) she could be enrolled but that didn’t happen, obviously. After these doses of radiation, all we really have left is surgery, which is very dangerous and tough to do. There is maybe the possibility of injecting chemo right into the CSF, but that’s not a standard protocol.

It’s nice that everyone is telling me that they’re sorry and that they’re there for me, whatever I need. I almost feel behind on my schoolwork, but I just don’t care that much. I’m studying as much as I can in the hospital and at home, but sometimes it’s hard to concentrate and I think the stress is making me more tired than usual. Still, I’m getting lots done.

I saw my anatomy group today and I’m obviously in a funk because I don’t crack jokes and I’m almost emotionless and toneless when I interact with people other than my family and the doctors in the hospital who are treating my mom. On the one hand, I don’t feel like I’m being affected that much, but I can’t control how I’m acting and I’m obviously affected.

I’m going to go to Anatomy classes and try to study biochemistry as much as I can for Monday’s exam. Other than that, I plan to be in the hospital as much as I can. It’s a bit difficult because there is no reception in patient areas (they jam the phone signal). I wanted to go tonight after meeting with my anatomy group, but my dad told me I shouldn’t, that my mom would be asleep anyway, and that I should rest and do my work. I promised her that I’d come back so it’s frustrating, but I will see her tomorrow after 5. I don’t know whether I should be there all the time or save my energy or what. I guess I just want to spend time with her and make her feel better.

Sickness

So I wrote a few things down about my mom being sick and I haven't posted them. Here they are:

10/18

I missed classes today (and will miss them tomorrow) because I found out that my mom has become sicker. My mom and dad love to keep her health under wraps because they don’t like for me to worry, so the fact that I know that she is feeling sicker made me worry more than had I been told all along. Early in the week, I found out she was having intestinal problems. Now, it seems that the nausea and all that was due to severe pain.

I’m not sure whether the scariest part is. My mom might have spinal cord compression that’s affecting her right leg; she’s had it before, and has had a lifetime dose (meaning she can’t have any more regardless of whether there’s more tumor there because her normal cells will commit suicide). My sister also thinks that there’s swelling around my mom’s brain, which I guess is worse.

My mom is always vague about how much pain she’s in because I guess she doesn’t want us to be concerned for her health. This week, the pain became so bad that she is taking 3 oxycontin every 4 hours and her right hip and leg are very weak. The oxycontin is making her disoriented and sleepy, though she is very coherent. Still, when she’s coming off the pills, she is much more clearheaded and responsive.

It’s really scary to see such a sharp decline in her health. Just a week and a half ago, she was walking around, washing dishes, and helping out for her and my father’s birthday party. She’s had a limp for a while now, but it has become very pronounced. She needs to hold on to walls or to my hand when she walks up stairs or even across a room, and I can see her cringe and grunt softly when she is overexerting herself simply to walk forward sometimes. I’m reminded of when my grandfather came back from the hospital a few months before his death, and it scares me. He also had a hard time walking and the same pained look when he tried.

She seems very embarrassed about her pain and inability to walk, and it’s frustrating. I’m her son, and I want to take care of her when she is ill. We are not doing her favors, we are not giving her pity, we are just trying to help and make her as comfortable as possible because she is our mother/wife. She also keeps saying that my father must be having a very hard time and is not happy with her because she’s become so weak. It’s hard to understand the way she is feeling, like a burden. I know my dad and he wants to help very badly. He is not sad or angry because of her, but because he is having a very hard time seeing her so weak. He loves her so much that it’s hurtful to see it.

I am not as sad as I thought I would be upon seeing her. I might just be really good at blocking things out or convincing myself that I’m happy-go-lucky. I do feel bad and it is sad to see her like this, but it’s not affecting me like it is my other family members or even my friends. Sara called me today to ask how my mom was doing and I told her a bit about the situation. She asked if I was fine and I said “you know me,” to which she responded “Yeah, I’m probably sadder and more worried than you are right now.” I don’t feel bad about it, I just accept that this is who I am. I also feel like I am helping my family by being so strong and unaffected, and smiling and helping all I can. I remember fellow students and patients in medical school speaking about how their stoic doctors gave them faith and helped them feel better because of the doctors’ strength. I know my personality, and I like that I can be a source of strength for those around me.

My mom just went to sleep in the next room. I’m sure she is tired from all the trips she has to constantly make, to appointments, to chemo, to imaging. She is tired from the pain and from the pills. I’m so amazed at how she has been able to handle such a difficult disease. Maybe it’s for her family. I don’t know why she hasn’t given up and how she remains so strong, but I hope that I am part of that reason, and that my father and sister and grandmother are as well. We love her and she knows this, and she goes through such difficult procedures and pain and everything while trying to seem as if it’s nothing. It’s unbelievable. I’m very proud of her.

Settling In

White Coat:

So since we last left off, our class had its white coat ceremony. For those of you who don’t know, this is the ceremony where we get short white coats that make our parents think we’re doctors. These same white coats allow other (real) doctors to laugh at us because they have long white coats and ours are so short that if I ever wore a belly shirt (I know what you’re thinking..and no), I’m pretty sure the white coat would end first. Fun fact: the reason doctors have white coats is so that you can bleach them you see, these coats will eventually get blood, vomit, and other wonderful bodily fluids on them (not mine, hopefully). This is the same reason I still have white sheets on my bed.

Something kind of cool happened that day. One of our classmates kept complaining of abdominal pain, and because we had our Emergency Medicine class, his roommates were able to diagnose him with appendicitis. As we were getting out white coats, he was getting an operation in the same hospital. He’s doing fine. They even gave him his own little white coat ceremony before one of our classes.

I also passed my second exam. I think I’m starting to get used to this place and have decided to study a bit more often. I figure, if I can learn more about this thing called medicine, I might as well, right? Now that I’ve settled in, I’m back to “med school is not unbelievably hard but is challenging and requires some work” which I guess anyone could have told you.

Getting Impaired:

The other cool thing that we did recently is called the “impairment exercise,” where for three hours you are either in a wheelchair or in a set of braces that don’t let you move one side of your body. The wheelchair is supposed to simulate a patient who had a car accident and is paraplegic, while the braces simulate a stroke that left you without feeling on one side of your body. I opted for the wheelchair.

I never imagined how hard it was to get around on one of those things. Even when curbs have ramps on them, sometimes it is extremely difficult to get on one. I wanted to go home to get a pair of gloves so that my hands wouldn’t die from all the pushing, but when I got near my block the street was so steep that I decided I’d rather not hit oncoming traffic on my way home. It was very intimidating, especially when an old woman asked me whether I needed help (I answered yes, by the way, and she just continued to stand there). Many people were very helpful and wheeled me around for 10 seconds, and most everyone was nicer to me than they normally would be (I know, not saying much here). I was struggling at one point because I think sidewalks are tilted slightly towards the street so that water can drain, and every time I pushed I veered towards traffic. One older gentleman saw this and told me the following gem “You should get a motorized scooter. You really look like you are having trouble there.” Thanks, grandpa.

I decided I’d had enough of the pity and went for the gold. For about an hour, I went around Central Park’s reservoir on my wheelchair. Apparently, the wheelchairs we got were huge and heavy (and I had one of the heaviest available because it looked comfortable) and when you are actually disabled, they make a custom-fit chair out of titanium that is much lighter. In any case, I got many, many strange looks, a blister, and black hands from all of the dirt. Still, I made it around and felt accomplished. It was also interesting to see reactions. Some people just smiled at me, but the smiles were more like “oh wow look at him struggle.” Some people just kept running by me. Many kids who ran by stared at me and looked back at me. I also though some tourists were going to take photos of me because they seemed so interested. I don’t know whether they though I was training for the Special Olympics or something, but believe me I looked like I did not know how to use the chair because I had a few old women who were power-walking zoom past me.

Some Photos: