Posts tagged kidney

Scan Day

Mar08
2012 14 Comments

Written by Linda

One of the aftermaths of having cancer is needing to get scanned regularly to be sure there is no reoccurrence. I had my first scans in December and I went back today for my second round.

I go to the Johns Hopkins Hospital:

They have crazy colored windows in the hospital.

This is a separate part of the hospital, the Sidney Kimmel Cancer Center which is beautiful inside. But I get a little freaked out every time I see the signs that say “Cancer Center” because I really don’t feel like I ever had cancer.

But how can you not like a place that is painted purple?

So light and airy, and there are even trees. I have a card with a barcode on it, and I have to scan my card whenever I go to a new section of the center. When I first get there I scan my card and it prints out my schedule:

First I get weighed, blood pressure, temperature and pulse. Then a blood draw. The lab people are so good at their jobs, all they do all day is draw blood so they gets lots of practice. I can hardly feel it. They are pretty friendly too, if I try to make conversation.

Next stop is hydration. I need two hours of saline fluid before my scans in order to help the contrast dye get through my kidneys more quickly. The dye isn’t good for kidneys, so the quicker it can get through, and the more diluted it is, the better. I get my iv here, and these people are really good at their jobs also. For me the worst part of the process is the iv, but the nurse who did mine was an expert and again, I hardly felt anything.

This room is used for all kinds of iv stuff – people are getting chemo, platelets, and who knows what else. I was lucky that all I needed was saline. I definitely get a new sense of perspective when I am in the cancer center and see the other patients.

A nice gentleman came around with a platter of snacks and fruit and offered me some, but I am not allowed to eat before the CT scan. I’m not sure if he was giving that stuff away, or if I would have had to pay for it. My nurse kept checking in with me and keeping me informed about what was happening and that she was in touch with the doctor to be sure I got the right amount of saline.

Then it is off to get my CT scan. They leave the iv port in my arm, taped up, because I need it for the CT scan contrast. In the waiting room a very friendly employee goes over paperwork with me. She comes to my seat, I don’t even have to get up to go to the desk. After the paperwork she asks me if I am comfortable and if she can get me anything. I tell her I am fine, and she says if I need anything at all to just ask.

Then I go back to the radiology wing, and another person changes my iv around, and gives me two giant cups of water to drink. I get my scans, which hardly take any time at all, first without contrast, then with contrast, then the contrast iv comes out, they wait 5 minutes for the contrast to get to all of my parts and do another scan. That is it.

Finally I can eat. It is now 12:05PM and I have been there since 7:15am, I am starving. I had brought a thermos of coffee and some snacks, and I sit in the lobby for a few minutes and have my breakfast.

Then I wait. And wait. And wait. I had so much fluid in me and I really needed the bathroom, but I was afraid I would miss my name being called. Eventually I gave in and went to the restroom. Finally at 1:15 my name was called, and I went into the doctor’s office. It turns out that the physician’s assistant that I usually see has left the hospital and there is a new one. This new PA was so bubbly and friendly and she laughed the whole time. She said my scans showed no sign of cancer, I am still NED – no evidence of disease. I assume she is more subdued when she is working with patients who are sick. I hope so anyway.

She told me that she was with the radiologist when he checked my scans. This is what she told me:

“The radiologist said that these scans must have come from a very tiny person. I asked him how he can tell that from the scans and he said there is no fat.”

Well, that isn’t true, there is plenty of fat, especially around the abdomen which is where parts of my scans were taken. She said compared to most people who get scanned there, the fat is negligible. So apparently on a CT scan, I am tiny. That made me feel good. I didn’t even know that fat shows up on a CT scan.

I never actually saw my doctor – I didn’t really need to see him, but I like to see him because he is a very good looking guy, and also very nice. Then I scheduled my next visit, went to the restroom a few more times, and left. By then it was almost 2:00pm. It’s a long day, but all in all it’s not so bad. I brought my new iPad and watched and listened to videos from my new school, and some YouTube cooking videos. Also caught up on some email and blogs. The people at the center are very caring and friendly, and it is always a relief to be pronounced NED. And hopefully things will stay that way.

Posted in Health - Tagged cancer

The Surgery

Jan27
2012 9 Comments

Written by Linda

September 9^th finally rolled around. I still felt perfectly fine, and the Saturday before the surgery I ran 12 miles. I was getting a little nervous, but about silly things, like what if the surgeon removes the wrong kidney, or what if I wake up and I’m a vegetable?

About a week before the surgery I was feeling very overwhelmed. I had spent a lot of time researching and reading. I needed shopping therapy! So I stopped at Target to buy some clothing for the hospital and the recovery period. A bunch of comfy pants, t-shirts, a hoodie and a button up cardigan kind of thing, and a lightweight robe. Everything was so cheap, I figured in case one day it all reminds me of cancer, I can throw it away. You’ll notice how I color coordinated everything in shades of gray and black? This way when people came to visit me I could still be comfortable, but look presentable. As soon as I laid everything all out so nicely on the bed, Sheila jumped up there.

A lesson about drawstring pants. If you get up a lot in the middle of the night to go to the bathroom, elastic is a better choice than drawstring – untying and tying all night is too time consuming.

A robot named DaVinci performed my surgery, controlled by my surgeon who sat at a console on the other side of the room. DaVinci has a bunch of arms with little tools on the ends, and they do everything that used to be done by hand. Because of the skill of my surgeon, and the precision of DaVinci, the tumor was able to be excised without removing my entire kidney, and I was left with two thirds of a kidney and seven small scars. I woke up with tubes and needles everywhere.

First DaVinci was a great painter, then he was a Teenage Mutant Ninja Turtle, and now he is a surgeon. Amazing how things work out.

Remember how my surgeon said that 80% of people having this surgery go home the next day? I was in the 20% – I had to stay 2 nights. He also said that 80% of people having this surgery don’t need a blood transfusion – again I was in the 20%. I had lost some blood so I needed more. The whole IV experience was not good, as a matter of fact it was the worst part of the surgery.

I had told my friends and family not to visit me in the hospital, since I knew I wouldn’t be there long and I probably wouldn’t feel well. My husband and son spent time with me, and my daughter would have but she was away at school.

So now I was going home without cancer. I had had cancer for a total of 43 days, well that is how long I knew I had cancer. I didn’t consider myself a cancer survivor and I didn’t think that I even deserved to say I had cancer, because it wasn’t “real” cancer, the kind that people battle and fight.

An enlightening part of my experience was the reactions of people around me. Most of my friends and family responded as I thought they would, although there were a few surprises. My mom came to stay with me to help out for a few days which was great, she was able to take me to places like CVS and we took little walks. The first few days after I got home I felt awful. I didn’t have terrible pain though, just discomfort. My abdomen was so swollen and bruised, it looked like I had been in a really awful fight. I’ll spare you the photos.

My friends were extremely supportive. Some came to visit the day I got home, but knew to only stay for 15 minutes. Others came during the next two weeks, with books and magazines, fancy soap, fruit, and even lunch. They all were in frequent touch by text, email and phone, and they didn’t get annoyed if I didn’t return their messages. My neighbor from across the street, who I rarely see except for when we might both be outside walking our dogs, came to visit and brought me two running magazines. Even though we hardly know each other, she knew I was a runner. I cried when I saw the magazines, it was such a thoughtful gift. Another friend, when I told her I had no appetite for anything, made me crepes for breakfast and brought them over.

No one in my family besides my mother came to see me, which wasn’t really a surprise. A couple of them sent lovely flowers and gift baskets. Some called often to see how I was doing, and they repeatedly said they wanted to see me. I assured them that I was home and not going anywhere, but they never showed up. They seemed to feel a little bit guilty and wanted me to tell them that it was ok that they weren’t visiting. If I didn’t return their calls they would comment on how they called yesterday but I didn’t call them back. They kept asking if I needed anything and they made me promise to call them if I did. So I promised, but in fact I would not have called them if I needed something.

There were acquaintances who told me that they wanted to visit, or bring me lunch, and then when I finally went back to work they exclaimed “But I never got to visit!” Why did I feel guilty because I wasn’t home recovering long enough for them?

The 43 days after the surgery were more difficult than the 43 days before. When I got my diagnosis I immediately immersed myself into making a plan, figuring out how to get rid of the cancer, choosing doctors and hospitals and doing research. But after the surgery I didn’t have any more plans. I didn’t feel well, I was continuously nauseous, I lost 8 pounds (some people said I looked great, and others said I was too thin and they could see my bones), and my recovery was too slow for my liking. Ridiculously I went back to work after only two weeks, which slowed my recovery even more. I felt as though I would never get better. One night Mr. Lemon came home and I was crying on the bed. He immediately got scared and asked what was wrong. I replied, “I’m never going to get better. I’m going to be sick and old and only able to eat Saltines and drink Dr. Pepper for the rest of my life.”

Well, I moved past Saltines and Dr. Pepper, but there were some setbacks along the way…….

Posted in Health - Tagged cancer, surgery

What I Did Next

Jan26
2012 Leave a Comment

Written by Linda

I was still getting used to idea that I had cancer. I didn’t feel any different, I had no symptoms, I didn’t look like I had cancer. I thought I was healthy, I was training for a half marathon and I didn’t eat processed foods. I wasn’t obese (not even overweight) and I didn’t smoke. I felt perfectly fine. But apparently I had cancer.

Mr. Lemon and I met with the surgeon and we both really liked him. He was warm and personable (he called me a young woman, so I loved him immediately), and he had a lot of experience. He had performed this procedure about 80 times specifically on kidneys. He was not yet sure whether he could do a partial nephrectomy (remove part of the kidney) or a total, because it was unclear from the CT scan how far the tumor extended into the ducts of the kidney, and into the major vein and artery that bring blood to and from the kidney. I needed to have an MRI to give him a better idea of the blood flow, but he thought it would have to be a last minute decision while he was working on the actual kidney. Even if I had to have the whole kidney removed I knew I would be just fine living with one kidney.

So now I needed something to do, and to occupy my mind until the surgery, which was scheduled for September 9.

I thought that reading a lot about nutrition and diet would occupy my mind, and give me good information. I started with SuperHealth by Stephen Pratt, since I already had it in the house and had read it before.

I thought that I really needed to eat even more healthy food than I usually did, and one thing that I didn’t eat enough of is kale. I did eat spinach, but that was it as far as greens go. So I started buying big bags of kale, already cut up and the stems removed which made it really easy to prepare.

kale bag

Then I began googling information about kidney cancer, kidney surgery and the recovery. I found an online forum for kidney cancer patients and survivors, and a listserv as well. Both were an enormous help to me, both with information and support. The worst thing was that it seemed as though I might have to take a few weeks off from running, maybe even 4 – 6 weeks. Sigh. Which meant possibly not running in the half marathon that was planned for October. But I figured, there were other half marathons, and maybe I’d try for one in the spring. The priority right then was to get the tumor removed and recover from the surgery, and eat as best I can, and exercise to increase my strength before I had the procedure. That is what I had to stay focused on.

I had never had “real” surgery, just the two c-sections when my babies were born, and that was a long time ago. Not only do I not remember most of it, but things have changed a lot since then. With my son I stayed in the hospital five nights! Now they kick you out the next day.

In addition to the MRI I needed to have a pre-surgery exam with my primary care physician, more blood work, and a chest x-ray. After all of these scans and tests I thought it would be great to know that everything in my body was healthy and in working order. The surgeon had told me that 80% of the laparoscopy patients went home from the hospital the next day and were back to work in 3 to 4 weeks (I was hoping for 2 to 3). He also said that 80% of the laparoscopy patients didn’t need blood transfusions. He even said I might be better by the date of the half marathon, but since I’d be missing 4 weeks of training I obviously wouldn’t be racing in that one.

I felt a lot better after talking with the doctor and having a plan and knowing what it all entailed. The not knowing was the scary part, ignorance is not bliss in my case.

I got my act together and started to do real (ie; not google) research. There was nothing I could do to improve my situation, except read and read and read. I read books about diet and lifestyle changes, which I will write about later, and those led me to watch movies like Food Inc and Forks Over Knives, which all led to a total change of my diet. I cut out animal products completely because I learned that the healthiest diet is plant based. I also continued to run and bike, even though I knew I wouldn’t be able to run the half marathon; did I mention that I would have to give up running, my passion for the last three years, for four weeks after the surgery?

I cleaned closets, cabinets and drawers in case anyone would be coming over to visit me after the surgery. Cancer really organized my house.

Everyone said I was handling the situation amazingly well and that I was being so calm, therefore I must be in shock or denial. But I knew through my research that with a tumor as small as mine, the only treatment would be surgery, and my chance of recurrence would be 0 – 5%. I wouldn’t need any chemo or radiation. It didn’t seem like cancer to me, and I never said “I have cancer”. I just had to have a bit of surgery, four to six weeks of recovery and it would be over. I didn’t feel like this was shock or denial, it just was what it was. There were newly diagnosed people on the cancer forum who said they couldn’t stop crying. I guess everyone deals with this in their own way – my way was to get knowledgable and make plans.

More to come…..

Posted in Health, Nutrition - Tagged cancer, surgery

Diagnosis and Lessons Learned

Jan25
2012 7 Comments

Written by Linda

For years I was seeing a primary care physician (PCP) who I never thought was very good, but I was healthy so I didn’t really care. However, as of January 1, 2011 he stopped taking insurance so I went looking for a new doctor.

I asked for recommendations from friends, but every doctor I called was not taking new patients. The good doctors were all filled up obviously. So I checked my healthcare insurance website and found a PCP who was nearby and made an appointment for the middle of May.

When I went to see her she said she doesn’t do physical exams at the first appointment, and she wouldn’t do any blood tests. She said since I had a physical back in September I would have to wait a year (when I checked with my insurance company they said that is not true – I can have one physical per calendar year, it doesn’t have to be 365 days from the last one). I found her also to be patronizing and rude. But I had a feeling in my gut that I needed to get tests before September so the search continued.

Lesson #1: Trust your intuition

Started calling around again and at one practice the receptionist told me the doctor I asked for wasn’t taking new patients, but there was another doctor in the practice who was. I figured she couldn’t be any worse than the last PCP I saw.

Lesson #2: Sometimes you have to take a chance.

I went to see this doctor in June, and I was amazed – she actually listened to me! She believed the things that I said! It wasn’t all in my head! Maybe I’m not crazy! She ordered blood tests.

Lesson #3: There are doctors that will listen.

My blood work showed a high level of creatinine – a function of the kidneys. She repeated the test, and it again came out slightly high (it was actually at the high end of normal). She sent me for an ultrasound of my kidneys. (Hmmm, I wasn’t having any kidney symptoms.)

Lesson #4: If an ultrasound technician spends 5 minutes on your right kidney and 30 minutes on your left, you can be assured there is something wrong.

My doctor called to tell me that there was a “lesion” on my left kidney and she wanted me to get a CT scan. Lesion? That doesn’t sound so bad, it’s like falling and skinning your knee, right?

Lesson #5: Sometimes doctors hide bad things in innocuous sounding words.

I went for the CT scan. A couple of days later I went to the doctor for the results, my doctor was on vacation so I saw a different one in the practice. He told me that the CT scan showed a mass in my kidney and I would need to see a urologist right away and have a biopsy. He made me an appointment with a urologist for that same day.

Lesson #6: If your doctor wants you to see a specialist on the same day they get the test results, you can be assured something is bad.

That afternoon I went to see the urologist and he told me that something like 95% of these tumors are malignant, and they don’t biopsy them. I would need surgery asap. Luckily he had a partner who did this type of surgery laparoscopically using a robot. When I scheduled an appointment to see him the receptionist said, “Is this for a cancer follow up?”

Lesson #7: The first time you hear the word cancer applied to you, the feeling is like getting hit over the head with a sledgehammer.

Posted in Health - Tagged cancer, doctor, medical