Category Archives: medical

Dec 11 2011

Too Much To Say

I have so much to talk about. I don’t really want to write about it here, except for maybe bullet list issues, because when I write about things I don’t talk about them in therapy. So I’ll just start with this:

• My husband forgot about my oncologist appointment and never asked me how it went, he actually went out to dinner with his buddies and got home late. Needless to say when I told him that it didn’t go well and the cancer came back, it got his attention.

• Friday morning I planned to run, but I was so despondent about the cancer having come back (this was before the “oops” phone call) that I could barely get out of bed. So I ran Saturday morning and I had a great run.

• I saw a movie with a friend Saturday afternoon (The Descendants – it’s good) and went out to dinner with my husband Saturday night.

• I ran in an 8K race this morning and got my best time of any 8K I have run before.

• I see the kidney doctor tomorrow; my husband is coming with me.

• I had an email exchange with my sister who told me that I can’t make peanut noodles for our family Hanukkah party. It seems all of a sudden someone in her family has a peanut allergy. So I told her I would use cashew or almond butter instead and she said that would be great. Something about our email exchange bothered me.

• Something happened to me when I was told that I had a recurrence of the cancer, and something else happened to me when I was told they made a mistake. Emotionally I mean. All I will say now is that for the first time, I feel like I really had cancer. I feel different.

Dec 9 2011

False Alarm

I got a call from the oncologist’s assistant this morning. The radiologist looked at my scans and determined that the nodule is not a cancer recurrence. It is a normal piece of tissue that has relocated, it was on my last scan but it was in a slightly different place.

What a wild ride for the last 24 hours.

Dec 7 2011

One Big Happy Family

Yesterday I got an email from my sister.  The same sister who didn’t contact me when I had my surgery, not by phone or email or text.  And when I saw her at my mother’s brunch a few weeks after the surgery she didn’t ask me how I am, or how I am feeling.

She works at the hospital where I am going tomorrow, it is where my oncologist is.  She is not a doctor, she is a dietician, but I am not sure if she has the ability to see my file.  Everything is computerized there, so my file is not the paper kind.

I had told my mother that I would be going for my 3 month scans this Thursday.  My sister’s email said:

A little birdie told me that you will be @ the hospital on Thursday. If you would like me to stop by or if you need anything while you are there, please let me know. I hope all goes well.

Thinking of you,

A

I’m wondering why all of a sudden she is so willing to be helpful.  I don’t trust this, she is very manipulative.  And the “little birdie” thing – she talks like that and it is so annoying to me.  Why couldn’t she say “Mom told me…”

I forwarded her email to my mother with this:

 I would appreciate it if you wouldn’t tell A, or anyone for that matter, about when and where my hospital visits are.  It’s really nobody’s concern.

My mother responded with this:

 

I’m sorry, I didn’t mean to intrude on your privacy.  I haven’t mentioned this to anyone other than A, and she is concerned about your health.  Pls don’t take this the wrong way.  We all are family and your health is important to all of us.

If you wish, in the future, I will not mention your health issues with A, although again she is concerned about you.  Let’s all move along and get on with our lives and be together as a family.

Mom

At least she said she is sorry.  I don’t believe that my sister is concerned about my health, actually there is nothing to be concerned about, I don’t have cancer anymore.  “We are all family????”  Well I guess so, by blood.  My health didn’t seem to be important to my sister when I did have cancer.

So now we shall move along and get on with our lives and be together as a family.  Oops, not that last part.  My sister and I do not have a relationship, and I do not care to have one with her.  Just because we are sisters doesn’t mean that we have to be together as a family.

Whenever my sister and I had an altercation, my mother would tell me I have to overlook what she does.  That blood is thicker than water.  But I got tired of overlooking and although I will continue to overlook, I will not have a relationship with her.

I also have an appointment with the kidney doctor at the same hospital next week.  My mother doesn’t know about that, I don’t plan on sharing any information with her about possible kidney disease.  I’m concerned that my sister will look at my file and see that I met with a kidney doctor, and be able to read his diagnosis and notes.  That is why I didn’t want my mother telling my sister that I am seeing any doctor at the hospital.

When I go tomorrow I will find out if she can see my file.  I’ll feel better knowing that she can’t.

Oct 27 2011

How Quickly Things Can Change

I went to see my new oncologist this morning, at the big famous hospital which is one hour away from my home. The place ran like clockwork, very efficient, and everything is computerized. They gave me an orange card with a patient number and a bar code on it and I had to scan it when I went into the office. Some people might think that makes them seems like a number, but I think it makes me seem official. Then I got weighed in kilograms, and I weigh a lot less in the metric system!

My oncologist is very warm and patient. He also has a nurse practitioner who was also great. We discussed whether I should have follow up scans every 3 months, or 6 months. He said “Because you are so young I think 6 month intervals would be better so that you don’t get exposed to excess radiation.” He thinks I’m young, ha! He is younger than me, so that was nice. We decided I would have my first scans in 3 months, and then decide how often after that. And he told me that not eating meat is one of the best things I can do. He is the first doctor to tell me that.

When I left I was feeling so relieved and grateful that I found this doctor. Those feelings were short lived. I looked at my phone and there was a voice mail from the woman in the nephrology (kidney) department at the big famous hospital. The message said that she didn’t see very many records in my file, that the last labs are from August and do I have anything more current, that the doctor doesn’t understand why I want to see him, he wants to know what I am expecting from him, the scheduling office should not have booked me an appointment on November 7th because they are not seeing patients on that day, and she will probably be able to get me an appointment but it won’t be for a while.

I called her back and told her that I saw the oncologist in the morning, and he had no problem seeing all of my records. She looked on her computer and said, “Oh, I see some more records, they must have just come in.” Which is total bull because the oncologist’s office told me all of the records were there a couple of weeks ago. Then I explained to her that I wanted to see a doctor because I had a kidney biopsy, and she could see the pathology report which was done at this very hospital, and it shows mild to severe kidney disease. I saw a kidney doctor locally once, but she was unable to help me and that is why I am looking for a new doctor. And my last lab work was in August because at the beginning of September I had surgery to have my malignant tumor removed from my kidney and haven’t had any labs since then. Then I started to cry, and I said that no one is able to help me understand this, I don’t know if I have 6 months or 6 years until I am in kidney failure, and I have kidney cancer and kidney disease and I just want someone to help me. She said she would talk to the doctor and ask him if I am worthy of seeing.

Then I called back and left her a message saying I will see any doctor in the department. For some reason she kept talking about one particular doctor, I don’t know why.

She is supposed to call me back. If I don’t hear from her tomorrow I am going to email the oncologist (he likes to communicate via email), since he agreed that I should see a nephrologist. Maybe he can help get me in there for an appointment.

Back to being frustrated. Crap.

Oct 18 2011

Therapy Recap 10/18/11

I’ve been depressed lately. I did have a good time at the beach with my friend this past weekend, but still feeling dismayed at how easily I get tired, and my lightheadedness, and my inability to run without my heart beating too fast and the headaches.

J asked me how the beach was and I said it was good. Then I told him that it turns out I do have a medical issue, so there. I said that I was mad at him at first, but now I am just sad. I told him that I didn’t think he believed me when I said I was feeling worse, that he made me doubt myself, and that he thinks I am so neurotic that I make up illness, or imagine it.

He said that was not his intention. That I know my body best. I said that is exactly true, so why was he trying to get me to doubt myself? I asked if it was a therapeutic technique – getting me to change my beliefs. He said that it was not. He said he is not a medical doctor, so the only issue he can work with me on is the mental aspect. He said that it doesn’t have to either mental or physical, it’s not either/or. I told him that he asked me last week if I thought this was a mental issue or a physical one. He didn’t say is it a mental and/or a physical issue, or is it mental or physical or xyz issue? He gave me two choices. And when he asked me I told him that I couldn’t answer the question until I got the results of my blood test.

J explained that, like a parent, he was being a foil to me and how I was thinking. If a child comes home with a failing grade on a test and says he is a complete failure, the parent would tell him that he is not a failure and it is just one test. But if the child comes home and says he failed a test, but it’s no big deal because he can throw out the lowest grade, the parent would say that doesn’t matter, the child should work harder at studying. So that is what he was doing with me.

He asked me if I was looking for validation from him last week, for him to say that I do feel worse and whatever else he would say to validate me. I told him that, no, I was not looking for that. I had seen my doctor the day before and she totally believed me and did tests and made me feel that I wasn’t a crazy obsessive hypochondriac. But I was not looking for him to make me doubt myself either, and when I left the session last week I was truly confused.

Then we talked about the vitamin b12 deficiency, and that I am relieved that it is something that can be treated. We spent quite a bit of time talking about how I feel that I will never get better, and he said I don’t know that for sure. I said that I am trying to be realistic, and he said that we don’t know if that is realistic. I said I don’t want to be optimistic, because what if I really never get better? It is better to have low expectations and be pleasantly surprised than to have high expectations and be disappointed. He said he normally feels that way, but in this case I shouldn’t think that way. I told him that the nurse told me I would feel better right away after the injection, but that didn’t out to be the case.

He said rather than say I will never get better, I should look at it that I am afraid of being sick. We talked about my fear, and I mentioned my father again, and that based on my experience with people in my family, people tend to get sick and never get better.

We talked about work, and how I made a mistake going back to work after just two weeks, and not speaking up to my bosses to tell them I couldn’t do the amount of work that I normally did before the surgery. I said that to talk to them about that would be admitting that I am sick, and I made a commitment to my jobs and I don’t want to break my commitment. J said that if I continue to overwork myself I might get sick enough that I can’t work at all, and then I would really be breaking my commitment. We spent some time talking about how I can’t talk about this to my bosses, and why.

J told me that I looked sullen today. I told him that I have been feeling down and hopeless and without much hope that I will get better. I said it’s been two months already. He said he didn’t want to argue with me, but it has only been five weeks. Really? Yes, he is right, but it seems like the surgery was much longer ago.

I felt like I was whining and complaining in session today. I got through cancer, I survived my surgery, and here I am whining and complaining because I am tired and lightheaded and get headaches and lose my balance and can’t do what I used to do. Should cancer make me feel obligated to be grateful and have an amazing life? I would think many people think so. I feel ungrateful.

After the session I met a good friend for lunch. Her husband recently found out that he has cancer, and he started radiation yesterday, and he has a tough road ahead. My friend said, “Getting old sucks” and I just started crying. She asked me what was wrong and I said that I just feel like I am never going to get better than this, and I hate being sick, and I am overwhelmed with all of the medical stuff I am dealing with. I woke up at 5am today thinking “Which doctor told me to get blood work before I came in – the oncologist? The surgeon? The nephrologist?” I’m always talking to doctor’s offices, and faxing things, and calling again to be sure the faxes arrived, and keeping track of paperwork. My kidney binder is getting bigger and bigger. It is overwhelming and I don’t want to do it, I just don’t want any of this. But of course, it is what it is and I need to accept it, put on my big girl panties and get through it.

I vowed to myself at my next session I won’t whine and complain.

I am trying to get up the courage to email my boss and tell her that I really can’t work as much as I have been, that it is wearing me down, and I’m not getting better. J told me what to say, and my friend told me the same thing. But I can’t do it. I guess I am afraid of what she will think of me, and this is my constant problem, worrying about what other people think, not wanting to disappoint anyone. It is a problem that I haven’t been able to overcome in three years of therapy.

I wanted to stop at the wine shop on my way home and buy a bottle of wine, which I haven’t done since March. When I am depressed I want to drink, and when I drink I get depressed. I forced myself to go home without any wine. But tonight I took one of the 40 Percocet tablets that I was prescribed after the surgery. It is making me feel better. But I know this isn’t a solution. I don’t know what the solution is, I guess there isn’t one.

Oct 12 2011

There IS Something Wrong With Me!

My doctor called today and told me that I have a vitamin b12 deficiency.  I looked it up and the symptoms match mine.  I have to get b12 injections monthly for three months and if my levels increase enough I can switch to oral b12, or I might have to continue the injections.

So there, J, wonder therapist who didn’t believe me that I started feeling worse a week and a half ago.  He tried to convince me that I didn’t feel worse, that I just wasn’t getting better fast enough, or I was in an emotional dizzy after getting the news about my kidney disease.  Ha, I really was feeling worse, I am not crazy.

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Oct 11 2011

Therapy Recap 10/11/11

I’ve been feeling down lately. Since my surgery I was feeling better and better, but then I stopped feeling better. I’m not back to normal. I went to the doctor yesterday to be checked out, and she ordered lots of blood work, but she hasn’t called me with the results yet.

So J asked how I was and I said fine, as usual. But then I guess I didn’t look fine and I was moping and he asked me what I was thinking about. I told him that I feel like I will never get better, that I’ll be old and sick forever. I had printed out a photo of my boss and me from a race we did a week before my surgery and I showed it to him. I looked really healthy, and even happy. I said I will never be like that again.

He seemed surprised by all of this, he said he thought I was feeling better last week, and I said I was, but now I’m not. Then I told him about the biopsy results that I got last week that show I have kidney disease, and he made the connection that maybe I started to feel worse after I got that diagnosis. Maybe I am thinking that I am finally getting better from having half of my kidney removed, and everything is good, and then, bam, I get this other disease. And I talked about my frustration that no doctor is able to explain it to me. My pcp who I saw yesterday took time to read the report while I was there, and she thought it would be a good idea to see the nephrologist at the big teaching hospital. She said that there is a drug that is used for kidney disease, but it lowers blood pressure, and that wouldn’t work for me.

I told J about getting together with the nursery school teachers that I haven’t seen in so long, and that I talked about cancer with one of the other teachers who had cancer three years ago. She told me about a wellness center for cancer patients, and I checked out their website. They offer a support group for people who are finished with their treatment, and the hospital where I had my surgery offers a similar group. I said that it makes me feel normal to know that there are these groups out there, and J asked if I was going to go to one of them. I said, “No! I don’t need that.” He was confused, since I said knowing about the groups makes me feel normal. I said that knowing that there are other people out there who need support after their treatment is over makes me feel normal, but I don’t need a support group. And anyway, those people probably all had “real” cancer, and I don’t.

J told me that I had gotten to the point where I could accept help and support from friends and family, not because of the cancer, but more about the surgery. He said that frequently there is a let down after an event, even an event that isn’t necessarily a celebration.

I said that I don’t feel like I can talk about this kidney disease problem with anyone, first of all I don’t understand it yet, and second of all, everyone feels that I am “better” now, so if I talk about yet another disease it will just be complaining. I haven’t said anything to anyone about it. J said he knows I have a couple of close friends that I opened up to, and he is sure if I talk to them they will be good listeners. I said that I am going to the beach with one of them this weekend, so maybe I’ll tell her. Every time I think about it, though, I start to cry. He asked when was the last time I saw her, and I said we went to lunch a while ago, but we email and text all the time. I talked about how whenever I am with her I ask her about her cancer, which she had three years ago. I always ask her questions, even about things I am not going through, like radiation and chemo. I said that I really wanted to go to the beach, but I don’t want to drag her down. I can’t do a lot without feeling tired or even exhausted and on weekends I mainly just sit around. He encouraged me to ask her about this, to see if she has activities planned. So after the session I texted her and explained this all to her, and she said she was planning on spending the weekend relaxing, reading, and listening to the sound of the water from the porch. She asked me if I would rather not go, and I told her that I really want to go – I think I need a respite from my house for a while. So I think it will be good.

Then I told J about a friend who I have had for only about three or four years, and we would go out once in a while, and I would see her in her plays that she did with community theater. Whenever we went out she would end up crying, because she has never had a good relationship with a man and she desperately wants that. Anyway, as you know, I isolated myself from everyone a couple of years ago, and she continued to ask me to meet up, but I mostly ignored her. But we had a little facebook chat last week and I told her about my surgery and she was concerned and asked if I wanted to get together sometime. I told J that I don’t know what to say – I’d like to see her, but I feel like I owe her an explanation for why I didn’t communicate with her for so long. I don’t want to lie and say that I have been battling cancer, or that my cousin’s depression kept me busy for years. J told me that it is clear that she wants to see me, and I don’t have to tell her the whole story, just tell her that it was me, not her, and I needed to be alone for a while, but now things are getting better. I think that might work, especially because she likes to talk about herself more than she likes to talk about me.

That was about it, not very exciting, is it? We did go into more detail about “are you feeling worse” and do I think it is emotional or physical. I did concede that maybe I am not feeling worse, but I stopped feeling better. I told him how awful my first run was, but it was a little better on Sunday, and today I ran two miles. Much more slowly than I used to run, but at least my heart wasn’t beating out of my chest. As for is this physical or emotional, I will wait for the results of the blood tests before I make that decision.

I think after the session was over I concluded that what I am feeling is fear. I’ve written before about my fear of illness. I told J that maybe I made a mistake in having this surgery, the type of kidney cancer I have is slow growing, so I could probably have had a good ten years before it would get to the point of really needing surgery or killing me. But they would be ten good years. Now what do I have? Just sickness and being old and frail and cold. I never considered not having the surgery, it just wasn’t an option, all of the doctors said I needed to have it out right away, so I didn’t think about the consequences. And my surgeon was so optimistic, he even said I could run my half marathon if it wasn’t for the fact that I would miss a month of training. Ha! Either his other patients recover much faster, or I am just sicker than them. I don’t want to be sick.

Oct 1 2011

If I Wanted To Be A Doctor, I Would Have Gone To Med School

I wrote this post back on August 18th. I had had a more comprehensive test to see if I have kidney disease (in addition to kidney cancer) and the test came out normal, so both my surgeon and my nephrologist told me that I don’t have kidney disease.

However, my surgeon removed a little piece of my healthy kidney to have it biopsied, because that is the best way to determine if there is kidney damage. Last week my surgeon called and said, “The pathology report came back showing kidney disease. But don’t worry about it. I’ll send the report to your kidney doctor.” I called the kidney doctor a couple of days later (because she never called me) and she said, “You have kidney disease, and it is severe in certain spots. But there isn’t anything you can do about it.”

Don’t worry about it?

There is nothing I can do about it?

I asked for a copy of the pathology report, which I received yesterday, and then I spent hours trying to interpret it. The kidney is a very complicated organ, with lots of little parts that do lots of different things, and the pathology report is full of complicated vocabulary which isn’t used in day to day language. A kidney biopsy covers the major parts of the kidney – the glomeruli, tubules, interstitium and vessels.

Words I had to look up:

Acute
Ischemic
Glomerular
Focal
Fibrosis
Tubular atrophy
Hyaline casts
Fibrointimal
Interstitial

What I have determined is that I have:

1. Glomerular focal ischemic changes – mild
2. Acute tubular injury – mild
3. Ischemic changes reflecting chronic hypertensive vascular disease – focally severe
4. Chronic tubulointerstitial changes – focally mild
5. Arterial fibrointimal thickening with reduplication of elastic and replacement of smooth muscle – focally severe

How about that?

What this means is that I have spotty areas that have a restriction in blood supply in my glomeruli, which are tiny collections of capillaries that carry blood through the kidneys. These collections of capillaries also filter out waste, which comes out of the body in the form of urine. So that is a mild problem.

I have had some kind of mild spotty tubular injury which is not a chronic condition – the tubules are part of the nephron that waste filters through.

I have mild ischemic changes (ischemic means a restriction in blood supply) from chronic (chronic means ongoing vs a particular incident) hypertensive vascular disease and this is severe in spots. (Hypertensive means high blood pressure.)

I have mild chronic tubulointerstitial changes in spots – the tubulointerstitial area of the kidney is the part of the kidney outside of the glomeruli, nephrons, tubules, etc. This area has a lot of blood vessels and absorbs fluid recovered from urine.

As for #5, I have no idea what that means, I have been unable to interpret it, but I want to figure out what it is, because it is severe.

Bored yet?

I am now in the process of getting an appointment with a nephrologist at a major teaching hospital in my state, because I have never liked, trusted or had faith in the nephrologist I am seeing now. I particularly didn’t like her attitude of “You have kidney disease and you can’t do anything about it.” I asked her if I should change my diet and she said, “Well, I don’t know what your lab values are.” I had tons of blood work this summer, so maybe she should check my chart?

Since my father was in kidney failure and was a transplant recipient I know a lot about the kidney diet and I can handle this on my own. But I would like to see a doctor who can actually explain all of this to me, because I have spent so many hours trying to figure this out and I am tired. I also think it sucks. Cancer isn’t enough? I have kidney disease also?

Sep 19 2011

10 Days Later

It’s been 10 days since the surgery. I have no recollection of writing the last blog post, I must have done it on my phone. The weekend is a bit of a blur.

I did end up getting a blood transfusion, which was awful because of the problems with my iv. The nurse tried to start a new iv, but infiltrated the vein, which is the second time that happened since I checked in to the hospital. Are IV’s really hard to start, or is something wrong with my veins? So we ended up using the iv in my hand which was extremely painful. The nurse had to make the drip very very slow, which meant the transfusion took 3 hours. Then they took the catheter and drain out, and I went home Sunday night.

I didn’t feel very well last week, but am feeling a lot better now. I guess I look and sound completely normal and not sick because it seems that people are expecting my recovery to be over by now. I spent the weekend doing laundry, doing dishes, etc, while husband and son watched college and pro football.

My mom was here from Monday to Thursday. Was she helpful? That is debatable. My husband said the only reason she came was so that she could tell her friends that she is taking care of her cancer stricken daughter. I did send her to the store one day, and she took me to get my hair done. She slept until 9:30am every day, talked on the phone a lot, and watched Lifetime Movies all day. We did take walks, and she made me a meal or two. I’m sure she was happy that she was able to “help”.

Friends came to visit last week and called a lot. My husband’s mother, sister and sister-in-law call a lot and say they want to see me, but here I am, and where are they? I’m not going anywhere. They keep telling me if I need anything I should call them. Frankly they are the last people I would call if I need something.

A good friend called tonight to check on me, and she also said I should call her if I need anything and I said I would. She said, “No you won’t.” I told her I would just call her to say hi and talk.

This morning I went for a walk with a friend and I was telling her that I have no appetite and nothing appeals to me. When we got done with the walk she asked me if I would like strawberry crepes, and then she went home and made strawberry crepes and brought them over, along with brownies and cookies.

My aunt had told me she would come down to stay with me for a few days, but she never mentioned it after the surgery. I asked her if she was still planning on coming, I’m not sure if that was right of me, I didn’t mean to put her on the spot. She said that she is driving to Florida this weekend and maybe she could stop by. But she’ll come visit for a weekend after the holidays.

People are funny you know? They say a lot of things that they don’t mean. And they love to feel like are doing something for me, when all I really need is someone to sit with, to talk to, to laugh a little, just for short periods of time.

Two people in the last two days asked me how I am doing emotionally. I don’t know what that means. I do know that Friday I started to get very emotional – crying, etc. I cried when my neighbor came to visit with some magazines, and I cried today when my friend offered to make me crepes. I have nothing to be sad about – I saw the doctor on Friday and got the news that all of the cancer is out, and it was Stage 1, and I just have to have more scans in 3 months. Great news! But I am crying easily. So how am I doing emotionally? I don’t know.