Friday, October 30, 2009

Yah, I'm lame...

... since I haven't been here in far too long. But no news is good news, I guess. I'm right back in the swing of things at work, and busy documenting the stuff I didn't document before I went on leave, as well as clarifying documentation that wasn't as clear as my coworkers needed it to be. If I am lucky enough to go back to OSU for round two, I will hopefully leave things in better shape than I did in September. It's not that I left things a mess, but I like to make it as easy as possible for them to keep up with my assignments.

Today one of my coworkers gave me a file of some info she thought I should have as backup, which is a good idea. She commented that when she was looking for similar stuff while I was on leave, she had a hard time finding anything. Later when I was looking for a file I realized just how crazy my file drawers look to other people, and indeed they are a mess. I made a mental note to spend a bit of time tomorrow getting rid of stuff and reorganizing a bit. So I found it amusing that tonight Google Reader recommended The Clutter Diet Blog and the entry that I opened to is titled "Oh, Goody! It's National Clean Out Your Files Month!" A sign for sure! The author is talking home files as well as work ones. Well, my home files are in a very sorry state, and the last two days of NCOYFM would only put a dent in what needs to be done. But I will now DEFINITELY get to work in my office tomorrow. I only have two file drawers, for cryin' out loud, so it shouldn't take that long to make it much nicer. So, that is my goal and pledge to you, my readers... that I accomplish something with this little project.

Lately I have actually had more energy to work on decluttering in our house, and on keeping up with house tasks in general. At times I will watch myself moving from one chore to another and think, wow, who is this fairly efficient person who hasn't retired to her PC yet? Real progress has yet to be made, except on our kitchen table, which was a paper/toy/odd-item-that-nobody-can-identify-the-source-of magnet. I got it clear down to the wood, which was then cleaned with Murphy's Oil Soap and we enjoyed our first clutter-free meal as a family in a while. There has been a bit of backsliding over the past two days but I plan to nip that this weekend. I will admit that the fair amount of stuff that was Jim's went into a box, but he dealt with that graciously. I have this crazy goal to get our first floor common areas all tidy enough that if someone drops by unannounced, I won't die of absolute mortification. Sadly that goal is a bit off, and I am kind of embarrassed to be admitting this here, but if I'm not going to be honest, then this isn't much of an outlet for me.

In a prior post, I mentioned that my bout with hyperthyroidism caused me to lose quite a bit of weight. As my appetite returned, I figured some weight would come back, and it did, about 6 lb or so. Even though I wasn't surprised, I was a bit dismayed, as the weight loss was a wonderful side effect. I now have several pairs of work pants that I can no longer wear. And I have been able to wear several items that looked horrible on me not long ago. So in a typical for me head-in-the-sand reaction, I avoided the scale for several days. I think I was afraid that seeing it go up would dishearten me to the point that I would give up altogether on trying to eat more healthfully. This morning I finally bit the bullet and climbed aboard the Tanita. Lo and behold, no horrible news awaited my downcast eyes; in fact great news did, as I am a pound down from my lowest weight of two weeks ago. AWESOMENESS! It would appear that mealtime portion control and once again quitting nighttime snacking (mostly) has paid its rewards.

So, this energy that has arrived in the wake of my incapacity has been good for me in several ways. I want and plan to get some exercise going on a regular basis. I can walk at lunchtime at work, or on the treadmill in our basement that right now holds boxes, or do a walking dvd. It is hard with my schedule to have a block of time to devote to exercise, so for the time being I am going to have to squeeze in little bits of it here and there.

My diet itself is more under my scrutiny than ever before. Several people have recommended the book Anti-Cancer: A New Way of Life by David Servan-Schreiber. He is a doctor and researcher who developed a brain tumor, and decided to research how he could boost his immune system to fight the cancer. I have owned the book for a few months but only recently picked it up to actually read, in my ostrich way. I have only read the first few chapters but have found it interesting reading. At this point I am not up to the food chapter, but I have skimmed it and while the information in it is not new, it resonates more than ever; maybe I am becoming more ready to embrace change? Maybe I am also scared that if I don't make some changes, I will certainly regret those decisions as they impact my health? Maybe a good dose of both. And I am certainly aware of the impact on the girls of me modeling healthy eating habits. Not that they may take hold any time soon, what with the utter pickiness that goes on at mealtime! But I will keep trying; I remember hating as a child a lot of things I like to eat now.

Wednesday, October 21, 2009

Back in the swing

I started back to work on Monday. It felt odd to make the commute but my car and I remembered the way. I got lots of warm greetings from my coworkers, and my supervisor gave me a bunch of orange and red-and-orange roses, which were just beautiful. Getting back in the groove of work didn't take long at all; by the end of the day Monday it felt pretty much like I'd never been away.

Tuesday I worked in between trips to the Clinic for my thyroid testing. I had to visit Nuclear Medicine in the morning to get my dose of radioactive iodine. To my great relief, the iodine was in capsule form... no poking my veins! I had to return four hours later for the scans themselves. So I went back to work for a couple of hours. After the scan, I had to go to the endocrinologist's office, in a building across campus. The nurse doing the preliminary questions made me a bit nervous. She said, "If the doctor decides to send you for a treatment today, we will give you a pregnancy test first. Otherwise you'll get over there and they will send you back for one." Huh what? Where? She explained further that I might have to go back to Nuc Med for a radioactive iodine treatment. She left me on that note and then the appointment scheduler came in, apologizing for something but I had no idea what she was talking about. As she talked, I figured out that she had given a sheet of instructions to another patient who had an appointment for testing at Nuc Med, only the sheet was outdated and had the wrong location code on it. Apparently the patient had called the chairman of the Endocrine Institute to complain. Ouch! Fortunately, I wasn't that patient, and I had looked up the appointment in MyChart (the Clinic's online medical record system for patients) and so I knew that Nuc Med was in a different location from before.

As I sat there shaking my head, the doctor came in, with very good news. I had a case of thyroiditis, which has pretty much resolved. By Friday my T4 had dropped from >7.8 to 2.0, so by now it's likely further dropped into normal range. She instructed me to stop taking the beta blocker medication and said that she would like me to do repeat blood work in a month, but otherwise didn't need any more follow up with her unless I had another problem.

So, Very Good News! I was extremely relieved. I came home and pretty much collapsed, partly from the relief, and partly because I had done a TON of walking at the Clinic... the parking is NOT close to Nuc Med, so I hiked a fair bit... twice. But it was worth it to know that nothing sinister is going on in my neck.

Tuesday, October 13, 2009

Imelda's closet

You know how they say that when something bad happens, you are waiting for the other shoe to drop? Well, I have decided that my family must be residing in the closet of Imelda Marcos, since shoes just keep dropping.

Since I have been home this time, my appetite continued to be non-existent. I have also been dropping weight like crazy - like 27 lb in 2 1/2 weeks. I can definitely stand to lose that weight and then some, but it's too fast. Plus I have been feeling nauseated all the time, and have had to force myself to eat a little bit. The not eating resulted in weakness, which then made me more nauseated, so it has been a vicious circle.

Not that I have been up and about much... getting up and standing for any period of time was causing me to feel lightheaded and dizzy. One night last week Jim suggested that I take my blood pressure reading - genius! I did so and it was quite low. After that I quit taking my hypertension medication so that it wouldn't go TOO low. And my pulse has been high, running in the 110s and 120s at rest and up to 130 if I had just been up and about.

I tracked my bp readings all day last Wed and called Dr. O's office on Thursday. Lori, 'my' NP was not available, but the NP I spoke with was very helpful. She asked me a ton of questions and was very concerned about my rapid weight loss. She recommended trying to eat small amounts of food every couple of hours, and wanted to have a bunch of lab work done. She offered to fax an order somewhere here in Cleveland, but instead I wrote down all of what she wanted done, and emailed the list to Dr. Rini. He had his nurse enter the order so I was able to go to have the blood drawn.

On Friday I was still waiting for results when Jim called me from work. He had bad news - he'd just been informed that he was laid off from his job. He couldn't spend time giving me details since he had to clear out his office, so I had no real information about the situation until he got home. I was stunned by the news and then really upset. What happened was that some of the work his group does, to do with data security and storage, is being outsourced. So it was decided that four people are no longer needed in his group, and Jim had the least seniority of the four. Luckily they are being generous with severance pay, and he has leads out already, so I am trying to tell myself that something better will come of this. It's been a big blow to his self-esteem but hopefully he'll pull himself out of it soon.

While I waited for him to come home, I got a call from Dr. Rini's office. They had my bloodwork results and my thyroid was off. I have been told since I was pregnant with Carly that my thyroid has been low-normal and that eventually I would be hypothyroid. So imagine my surprise when I was told that my number was extremely high! They made me an appt with an endocrinologist for this coming Friday, 10/16, the first they could get. And they sent my results down to Columbus along with information about my appt.

I went online to look up hyperthyroidism and wasn't sure what to think... one of the causes could be a nodule, either benign or cancerous, on my thyroid. This was an upsetting notion to me, of course. My mother in law had hyperthyroidism as well, and told me that it can also be caused by a big stress to the body, which I definitely have had. I understood that but still felt nervous... then one of my kidney-onc list members told me that HDIL-2 can cause thyroid changes. So let's hope that is what it is.

By Saturday I was feeling worse... really shaky on top of everything else. Jim was really concerned so we called the Clinic's advice nurse line for help, late Saturday afternoon. The nurse was very kind and helpful. She agreed that it looks like hyperthyroidism is my problem. According to my symptoms, she recommended we go to the Emergency Room at the Clinic - she thought maybe there would be an endocrinologist on call so it would be better to go there than to one of the closer community hospitals.

So, we packed up the girls to have a sleep over at Grandma's and headed downtown. We got to the ER at about 8:30 pm. They told us they were "slammed" and the waiting room was busy. We were called back to a room at about 10:00 pm and the true waiting began. The first person to see us was a resident from Neurology - must have been on an ER rotation. He asked me what was going on, then decided he should go read my history first. Took him a while to come back; Jim commented that after reading everything, his head exploded! But he did return and said that they would draw blood. After that it's a dull blur; I told him that I have a medi-port so I didn't want an IV or blood draw from my arms. Next thing I know, a clinical tech comes in to do venipuncture. She went to tell the nurse about my port. Then another tech came in to do venipuncture. Finally the nurse was free and she was wonderful. She took care of everything efficiently and with kindness. In the mean time we had been told that they were going to give me a beta blocker to bring down my pulse. Then I was told I would be hospitalized until an endo could see me. This upset me a lot - how come the day before I was basically told I would be fine for a week until I saw the endo, and now I needed to be admitted? After consulting with hem/onc and endo, it was decided that the beta blocker should help me enough to go home. So the nurse infused my line with a beta blocker and sure enough, we watched my pulse go down right on the monitor. The nurse said she'd be back shortly to check on me but then wasn't. At some point around 3 am Jim noticed that my IV fluids bag was empty, so I hit the call button. It took like 10 min for them to answer!!! I have never had that happen. I told them I needed my nurse because my IV was done and was told "no problem". As of an hour later, she still hadn't appeared. I hit the call button again, and again 10 min later. It was incredibly frustrating. What if I was in that room alone and had coded? At some point they replied to my call, by shutting off the call light!!

The 4:00 hour brought some activity. I had sat up at this point and noted that my pulse was back up to 120 on the monitor. Then someone came in and said they were preparing my discharge papers. What the hell?!? The supervising doc came in and explained that because my pulse had initially gone down, the beta blocker was successful. They would be giving me a prescription for a higher dose of beta blocker to take at home. She also explained that our nurse had been tied up with a particular patient situation for a couple of hours. We told the supervising doc that we weren't upset with the nurse, but with the fact that nobody answered the call light. She agreed that was a problem and noted that there were several issues that had come up that evening that would need to be addressed.

My nurse came in to take the line out of my port, etc. and was extremely apologetic. We felt bad for her; she was wonderful with us but we understood that she couldn't be in more than one room at a time. However, this is why I LOATHE going to the ER. Bleah.

We finally got out of there at about 5am and went home to sleep. The girls were brought home by Grandma about 11:00, after PSR, so I didn't get a lot of sleep.

I started the beta blocker prescription that evening and it has helped a lot. As of this morning, my pulse was 78 and my bp was 105/67. And, I am getting my appetite back. Now, if I can get my energy and stamina back, I will be ME again.

Sunday, October 04, 2009

In the 8ww

The 2ww is a term familiar to people trying to conceive a baby, especially those who are battling infertility. 2ww stands for 2 week wait, which is the period of time between when a woman ovulates and when her period is due. It's the time when she wonders and worries if this time will be successful, or if she is back to square one.

Right now in the Monahan house we are experiencing a similar phenomenon, which I am calling the eight week wait, or 8ww. I have scans - so many scans! - scheduled for the week of November 16. I will have another brain MRI, a chest CT and then MRIs of the abdomen and pelvis. The idea is for us to have results before Thanksgiving, which is the 26th. If the results are positive, then I start round 2, cycle 1 on November 30, and round 2, cycle 2 on December 14. If the results don't show either stability or improvement, then my trips to Columbus will be over, and I will be back to square one, as it were, back in Cleveland. As there are lots of other options, it won't be the end of the line, but I sure hope that all the yuckiness I have gone through will prove to have been for something.

Last week in the hospital proved to me that you can't predict how you will react to an IL-2 cycle based on past cycles. It started out different in a good way because Jim accompanied me for the duration. It was wonderful to have him there to help me with small things and to hug when I needed one. I still get teary thinking of his kindness during my stay. Yes, he is my husband so it should be 'expected' of him to take care of me, but I was at first fighting my desire to have him with me against my desire to keep the girls' routines as similar as possible. Actually, staying at their grandparents' house the whole time I was away was probably the best thing for them. Grandma and Grandpa were wonderful with them, and while the girls tired them out, they enjoyed keeping them as much as the girls enjoyed staying there. Our dogs stayed at a kennel this time, which I think bothered Bailey in particular. Jim brought them home the morning after we returned. Trixie came right up to see me, her whole butt wiggling. Bailey came upstairs, looked in the bedroom door at me, and, ignoring my calls, turned around and went back downstairs. COLD! He got friendly again later on when he realized that he could nap on the bed with me.

But back to The James... we didn't have any crazy surprises this time, so we were able to get in to my room (actually a semi-private again at first) right away and were on schedule to get my first dose at 2PM. We hadn't eaten lunch, and had very little breakfast, so Jim went down to the Wendy's located in the hospital (it is Columbus, home of founder Dave Thomas) and got me a chili and a baked potato. Got my first dose of IL-2, along with demerol, tylenol and compazine. Well guess what... even though I never vomited during cycle 1, the trend didn't continue with cycle 2. Suffice it to say that I won't be ordering Wendy's chili for quite some time. My poor roommate had to smell our lunch, which made her nauseous, then listen to me retch. Meanwhile she was going through her own stuff. Luckily for both of us, a private room became available later that day so we were able to move. After this, it all becomes a bit hazy for me. I was alert a lot, and had visits from my Columbus friends, but felt very flu-ish the whole time. Then the bottom fell out... or actually my blood pressure. I remember them saying that it was as low as 60/30, though Jim says it was actually a bit lower than that... scary. I didn't realize it at the time, but they almost moved me to ICU. Fortunately they were able to bring my pressure up enough to keep me out of ICU. So, I had a grand total of 4 doses this cycle. I am not happy about that; since I had 7 last time I had a total of 11 out of 24. Rationally I know that if it is going to work, that this may be the amount I needed, but still I worry that I didn't get enough.

We got home on Monday evening and my in-laws brought the girls home. It was so great to see them but I was feeling so tired and sick that it was hard to enjoy them. The last several days have been a bit of a blur. I have felt absolutely crappy. After the first cycle I was a bit sick but this was definitely cumulatively worse. I have also been much more nauseated this time. Fortunately I asked for a prescription for Compazine when I was discharged; I thought I might only need it once or twice, but have taken it just about daily. I have been napping, still not as much as I should but more than I did last time, since I know I overdid things last time. Like the day before starting treatment, I used the push mower to cut the front lawn and part of the back. Stupid! About 1/2 way through I felt awful, but kept going. I will not be running a lawn mower again this year.

I'm looking forward to having energy again; it's coming back though more slowly than I had anticipated. As I feel better, I also feel more optimistic about the future, whether the IL-2 works or not. When I was in the hospital and when I first got home, I felt very pessimistic, which led to a lot of crying either alone or with Jim, who just let me vent, bless his heart. I have to keep fighting; I don't think it is fair to leave my girls with no mom at such a young age. And I want to enjoy some retirement years with my sweetie.

I pray a lot, too, which opens up a big issue for me. When I talk to God I ask him to please let me live a long and healthy life. I even tell him how unfair I feel it would be for me to not see my babies grow up. But then I think of the phrase "if it is your will" and that makes me so upset. I don't WANT it to be God's will for me to die early! Of course nobody does, but I can only think about myself at this point, right? I just can't feel okay with dying young, at least not right now. A family member was kind enough to talk to the priests at my parish about praying for me; this made me think maybe I should talk to one of them. Unfortunately, I don't know if they can change my feelings on this subject. It's too emotional right now - I have cried pretty much the whole time I have been writing this paragraph.

In short, I'm a mess. Hoping to clean things up sooner than later.