Posts Tagged ‘medical’

Note: This is a copy/paste from the post I just put up on Face Book. It’s difficult to write these updates and not forget things so it was easy to just paste it here.

On Thursday I got a call from my gastroenterologist saying the needle biopsy was benign but he doesn’t think it’s benign. He has actually seen it and was the first to detect it. He’s worried that we are not getting the full picture and might be lulled into thinking that all is okay. He really thinks it’s malignant. He said go ahead and see the oncologist today while I wait for the authorization to see a surgeon. His feeling is that the more eyes on my case, the better; another doctor may have had a similar case.

Today, the oncologist was also stumped and could only recommend either another biopsy, this time with an arthroscope as that will give them a better and bigger tissue sample even though it will be more invasive than the needle biopsy I had last week.

The tumor is on my right side and many of you will remember that I had a serious surgery two years ago during which a very large fluid filled cyst was removed from my right ovary. The tissue removed was biopsied and came back as borderline malignant. None of the current doctors had done a full health history so they didn’t know this. I felt it was relevant because both instances involved my right lower abdomen.

Once I explained all of that to the oncologist, he was able to access my records from two years ago and found that the growth two years ago was a “serous tumor” which he said are almost always benign. So now his theory is that the current tumor is also a serous tumor (not a misspelling) but is probably benign. So he wants me to stop worrying about it for now until we get the next biopsy which will hopefully give us a more complete picture of what is going on. So while I have some surgery coming up, it might not be a horrible thing. The tumor has to go so we can biopsy it and see what it is and also to prevent it from spreading to other organs and/or becoming a worse kind of tumor with a higher incidence of malignancy.


The oncologist is also going to try to present “my tumor” before his “tumor board” which meets Tuesday (the 11th). The tumor board is an opportunity for oncologist to present a case which is unusual or difficult and try to get input from other top surgeons. It’s up the hill at Oregon Health and Science University, a teaching hospital. So maybe that will help shed light on it!

So I wait some more. Hopefully I will hear from the surgeon and get to schedule that soon.

Thank you for your continued support. I cannot tell you what a huge difference it has made. It’s a very wonderful feeling to know that I have so many people to lean on. Thank you. Thank you. Thank you!

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That’s about four inches and it’s the size of the tumor that yesterday’s CT scan found growing outside of my gall bladder. From what the doctor says, the CT scan shows that it is “acting like it is cancerous.” The next step is a needle biopsy which should happen within the week and the gastroenterologist has already put in a referral to the oncologist. Approval for oncologist consult should take a couple of weeks, at least.

I’m sort of in shock. The doctor says it will have to come out, whatever it is, because it is protruding into the colon. So best case scenario is that it only has to be removed. But it is very likely that there will be a need for “follow up treatment.”

I managed to hold it together enough to call my three kids and tell them, and then my mother. I learned that hearing bad news is bad but having to relay the bad news to someone you love is far worse. So I guess we all have some more waiting to do. I wish the wait to be as short as possible.

I want to digest this news so that I can let my mind think about other things. Right now it’s kind of tough to think of anything. I’m sort of numb.

With luck, I can distract myself in a day or two so I can write and post here. I have a lot of ideas for posts.

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Come on in for a cup of something. I haven’t managed to get up for coffee yet. I’m moving slow today. It’s a bit brisk outside and inside so I’m under blankets, but come on it and I’ll grab a blanket for you and we can chat.

When I last wrote this week, I was having a lot of trouble with the medication I was given for diabetes. It wasn’t working and I was falling apart. I ended up getting an appointment for Wednesday. Apparently, my body has stopped making its own insulin so they put me on insulin. The doctor explained that the metformin I was taking doesn’t make the body produce any insulin, it just helps the body utilize the insulin being produced. With no insulin at all, the medication wasn’t doing anything. So now I am insulin dependent. They started with the lowest does and will increase it gradually. I go again on the 19th.

This past week was a little busier than in the past few weeks, mostly because of Spencer’s 4th birthday on Monday and the doctor appointments I had. Yesterday was also the memorial for my friend Peggie. I’m glad I went. I met all her family…most of which are former in-laws and a few former co-workers. It was a wonderful testament to who she was. I will add that she was the type of person that made friends with everyone immediately. The service yesterday was attended not only by family, but also by her gardener and her mailman! I’m so lucky to have known her.

I am currently reading (not very often) My Own Words by Ruth Bader Ginsburg.  I haven’t read more than about five chapters but I like it. Have you read anything you’d recommend?  I’ve also gone through the entire six seasons of Parenthood in the past week. You? What are you watching?

Well, I am cutting it short. I have very little energy. I’m hoping that will change when they find the right dose of insulin for me.

#WeekendCoffeeShare is a weekly blog link-up hosted by Emily at Nerd In the Brain. Head on over and check it out!

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Things are happening here at home so I’ve been absent. I can’t discuss it yet but I think this weekend’s coffee share will fill everyone in on things.

In the meantime, I have been thinking a lot about graduations and new beginnings. I guess it’s the season. I was going to write a whole post on graduations then things started happening on Tuesday and I couldn’t see writing that post or anything else.

What about you? Any graduation related memories? Tell me!

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I debated whether I should write this or not. Decided on doing it because if even one person benefits from any of this, that will be a good thing. The next question concerns how much I’ll be able to tell. I’ll be as transparent as I can be but I will say that I know for a fact that not everyone who reads this is a”friend” of mine and some people will delight in my woes. Not being paranoid. It’s just a fact. So with that in mind, read on.

First off, after a car accident in January of 2002, I was unable to go back to work because doing so would require me to be on fairly strong pain meds. I was teaching sixth grade and pain meds are a big no-no when people are entrusting their minor children to you. So no work meant no medical insurance.  I haven’t been able to work since. I have had no medical insurance since 2002.  I’m also diabetic, having been diagnosed in 1999.  When I lost my job I moved from southern California to northern California.  That was my salvation for diabetes care because I was able to find a clinic that did nothing but diabetes clinical drug studies.  I hooked up with them and I was set with free medicine and free testing supplies. When one study ended, they would find me another. Super!  Then in 2008 my financial situation changed and I could no longer afford California rents. I moved to Portland, Oregon.  Near enough for my kids to come see me. 

When I arrived in Oregon, I also had some kind of “lump” in my side. No chronic pain from it, only occasional pain. It looked like normal middle age spare tire weight but was not otherwise a problem.  My daughter loved Portland and moved here, too. She encouraged me to go to DHS to apply for medical assistance, she even drove me there and went in with me. I hate asking anyone for anything. I did ask and was told that as long as I was over 18 and not pregnant, there was no public health care assistance for adults. No application. No medical care.

I have had diabetes long enough to know what to avoid so I tried to control my disease through diet. That worked pretty well for a long time.  Then about four years ago the lump in my side began to grow. And grow. And shift positions.  About 18 months ago, my abdomen took on the shape of a small pregnant belly.  In the past six months my belly had grown to what appears the size of a full nine month pregnancy.  The bulge pushes on everything and is heavy and I always feel bloated.  I am uncomfortable 24/7.  When we were all supposed to sign up for Obama Care, Oregon choose their own program, not the Federal program.  That also became a problem because the computer software for the application process never…NEVER…became functional, leaving millions of Oregonians out of reach of insurance. Including me.

Then two weeks ago I began to have severe pain, which I associated with a previous gall bladder attack. Because of not having insurance, I did not seek medical attention.  I waited. I got better.  Then I got worse.  A lot worse.  My pee turned a dark brown. My face turned orange. And by last Wednesday night, my poop turned green. By Thursday morning I was short of breath, extremely weak, and disoriented. But I knew enough to tell my daughter that I wanted her to take me to a clinic. It was long past time. At the clinic the doctor said that my issues were so severe and so multiple, that she could not morally or ethically treat me. She sent me straight to the hospital ER and called ahead to itemize what her concerns were and what she felt should be tested and pursued. (This step is important because when a patient walks in to the ER, they take care of the most obvious and send the patient home. When a medical professional tells them their concerns and the minimal course to be followed, there’s a record of it and the hospital is legally required to follow up on all of it.)

At Oregon Health Science University (OHSU), the ER did blood work then immediately pronounced that I had chronic liver disease and they were admitting me.  I don’t have a history of any risk factors for chronic liver disease but I let them admit me because I have to get better. Between getting me to my room from the ER, we made a stop at ultra sound. Once I was in my room, a different doctor from the acute care unit came in and said he does not think the liver is the culprit. His best guess was that it was pancreatitis and gall bladder, both easy to treat. However there is fluid in the abdomen and it is obstructing the view and they couldn’t see the gall bladder.  They scheduled a CT scan to get a better look.

After the CT scan a surgeon from OB/GYN came to see me. She said they were seeing a clear fluid filled cyst attached to my ovary.  However, I told her I had a complete hysterectomy twenty years ago.  Upon more questions and physical exam, they determined that the hysterectomy doctor removed only my uterus but entered the wrong information in my file.  Now I have this humongous cyst growing attached to a host that shouldn’t be there.

If the cyst were free of sections, there would be no worry of a malignancy. My cyst has two small sections which could indicate a malignancy.  So the current plan is to send me home as soon as they can find the right treatment to control my diabetes which is not responding to the insulin. Then in two weeks I return for a removal of the cyst and while they do a quick read biopsy, the doctor will remove the ovaries and tubes that should have been removed twenty years ago. If the quick read comes back as definitely malignant, they have work to do which isn’t being discussed right now.  If we get a “not definitely malignant” they stitch me up and I recuperate in the hospital for three days. Then I go home and hold my breath for the final pathology report in as long as three weeks.  Then I will either get the all clear call or the other call.

Lessons? Lots.  Don’t wait until it’s too late.  When the door is shut in your face, knock on a different one.  When you have needs and concerns, take care of them, even if there are others that need you (that’s the toughest for me). When you need help, seek it.  When you think you know what’s going on with your body, remember that others have knowledge about your body that you may not have. But most of all…forgive yourself. It’s not all your fault.  Yes, you bear the blame for some of it but by no means all of it.  It’s time to be good to yourself and enjoy what you have and pray you will have it for many more years. Forgive yourself.

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