Snoopy's Updates

Erika's four-year ongoing battle with non-Hodgkin's and Hodgkin's Lymphoma after an autologous BMT and non-myeloblative allogeneic BMT.

Wednesday, May 24, 2006

Fevers & Zometa

I seem to have started a trend of making it through the work weeks feeling fine and then feeling awful on the weekends. This past Sunday I woke up with a fever that progressed throughout the day (I pretty much slept the whole day) and got really bad night. It was one of the worst fevers I've had in a while. Monday morning I was still feeling pretty awful and I also had nausea from what I believe is the chemo. It appears that as I have more treatments of Procarbazine the nausea seems to linger on for longer. Regardless I somehow made it through the entire day at work. Tuesday day I felt better, but by night I was back to having fevers again. I'm not sure even the prednisone is controlling the fevers like it used to since I'm getting them all the time now. I know if I mention to my doctor how often I'm having them they will insist that I have my Hickman removed so for now I'm staying quiet.

Today I went in to have labs drawn and to get my first infusion of Zometa. Zometa is a bone rebuilding drug that is usually used in cancer patients who have disease that has metastasized to the bone or that have bone cancer. It's also used in people like me who have early stages of osteopenia to help keep the bones from getting weaker and rebuild bone also. The infusion is given once a month and takes approximately 20 minutes. The main side effect is bone/muscle pain the next day, similar to what I experience when I get Neupogen. My counts were stable so I was given the okay to continue on my second week of chemo. I'll be back in a few weeks to get labs drawn again and meet with my oncologist.

This weekend Chris and I are going to LA to visit friends and get away. We don't have any big plans, mostly just relax and not think of work and the house! We're really looking forward to it.

Thursday, May 18, 2006

Radiation 101

During one of my radiation treatments last week, Chris got the full tour from my radiation technician. She was kind enough to let him take pictures and watch from behind the scenes as I got my treatment. It was great for me, because aftewards I asked him all kinds of questions about things I don't get to see! Below are some of the pictures that he took. The one next to the door is to show how thick the door is that separates the treatment room from everything else while the patient is being treated. The whole thing is so fascinating to me...

Yesterday was officially my last day of treatment. I got to remove the stickers on my chest and black sharpie marks. After my treatment I met with my oncologist to begin chemo again. My counts were back to normal so she gave me the okay to continue. I will go in for blood work next week to see if I can keep my two week on/off schedule or if we will have to cut back due to my counts being too low.

We also discussed the results of my MRI. She confirmed that the test showed several small fractures on both of my hips. She said it was an early sign of osteopenia (which is an early stage of osteoperosis). Next week I will start on a drug to help revive the bone loss. It will be give to me by IV once a month. It will probably take a few months before the bone starts to rebuild, but they don't want the problem to get worse. She said these fractures are most likely a result of being on prednisone for a long period of time and having not gone on a hormone replacement when my ovaries stopped functioning. At least we're being pro-active and taking care of the problem at an early stage.

Another thing that was brought to my attention was the possibility of removing my Hickman catheter. I'm still continuing to have daily fevers, which are very unpredictable. Sometimes I have them more than once a day and they can get up to 101F, which really drains me out and makes me feel miserable. Because my cathether has been in for two years now, they're concerned that it might be infected and could be causing the fevers. Most BMT patients only have their Hickman's in for a maximum of 3 months. I told them that I would only consider it if it could be surgically removed. Generally it's removed by simply just pulling it out, which is a horrific event. My first one was taken out this way and I was completely traumatized. Because this one has been in for so long, it would probably take a couple of people pulling on it and there's NO WAY that will be happening while I'm awake. I do often think of how nice it would be to be able to go swimming again and wear cute tops (something I haven't been able to do for 2 years), but I also think of the suffering I go through when I have to have an IV put in. I can't imagine going through that pain again on a regular basis. There's always the option of putting in a port (catheter that is under the skin) if necessary so it's definitely something to consider.

Thursday, May 11, 2006

Traumatizing MRI

On Tuesday I was scheduled to have an emergency MRI. The "funny" sensation that I had been having throughout my left leg got worse over the weekend and when I mentioned it to the resident on-call on Monday, he felt it was necessary to rule out anything serious.

I went to Stanford at 4pm for my radiation treatment and I was told to be at radiology for my MRI at 6:30pm. After waiting for an hour and seeing other patients who were there after me go in before me I questioned the receptionist on why it was taking so long for me to be called. She said my appointment was scheduled for 7:30pm and they were behind schedule. I was finally called in around 8:15pm and was in the MRI machine by 8:30pm. I was so exhausted that I fell asleep for the first half of the test. When I woke up I felt like it had been forever since I was in the machine. The "jack hammering" noise was still going on so I knew the scan was still in progress, but there was no communication from the technician in regards to how far along we were. After about 15 minutes I started to get frustrated and panicked and asked that they take me out of the machine right away. When the technician came into the room, he said I had been in the machine for approximately 1hr 15min and I had another 45min to go. I started crying cause I couldn't imagine how I could possibly lay still for that much longer without moving in an enclosed space. I've had numerous MRI's done before and never had one last longer than an hour. I told the technician I would go through with it, because I didn't want to come back another day and start the process over. They took a few more pictures, then injected some contrast, and then continued with the remainder pictures. I was finally taken out of the machine around 10:30pm. By then I was a complete emotional wreck. I've never had such a bad experience with a test. I was given no explanation as to why the procedure took so long, so I had no idea if was an error on their part or if they had found something seriously wrong which required them to take so many pictures.

Today I met with my radiology doctor after my treatment. He said that my MRI showed no indication of disease in the spine or a tumor pressing on the spine, however it did show several fractures on both hips. This is most likely related to being on Prednisone long term. He didn't recommend any follow up, but I will definitely be following up with my oncologist when I see her next week. If something isn't done about this problem now, it will only get worse and cause more discomfort. Right now I tend to experience hip/lower back pain when sitting for long periods of time. As for the "funny" feeling on my leg, he thinks that might be a side effect of the chemo.

Tomorrow I will be done with my 2nd week of radiation treatment. I will be officially done next Thursday! So far the main side effect has been pain when swallowing food and I'm starting to feel very fatigued. Of course I don't know if that's from the radiation or from the lack of sleep from working so many hours.

Saturday, May 06, 2006

More complications

Earlier this week when I went to one of my radiation treatments I noticed that my left leg was feeling "funny." I can't quite distinguish whether it's a numb/tingly feeling, but it doesn't feel the same as my other leg. I mentioned this to the radiology resident on-call that that day and he spoke with my radiology doctor. They think it could have been from me going off the prednisone. I went off of it on my own without my doctor's consent, which I guess turns out is a ready bad thing to do because it increases my risk of a type of pneumonia caused by radiation. I'm now back on it. The "funny" feeling is still lingering however, so towards the end of the week they felt it might be necessary for me to get an MRI next week to rule out anything serious.

Friday after my treatment I also had to get my labs drawn, because my test from Monday showed that my platelets were low. I don't have the results yet, but I should get them Monday morning. If my platelets are below 50 they will have to stop my treatment for now until they go back up. The lab draw did not go as smoothly as usual however. My catheter would not draw blood and so they had to give me TPA (a drano type thing that takes away any clots in the catheter line). An hour later, the nurse tried to draw blood again and was successful. It was quite an ordeal and not the way I wanted to spend my Friday afternoon. That night I ended up getting some high fevers with major chills and this morning I also woke up with a fever feeling terrible. I think it may have been a reaction to the TPA, because the same thing happened the last time they had to give it to me.

I'm also starting to feel what I believe is a side effect of the radiation. The last two days my throat has been sore and it hurts when I swallow. I'm okay with drinking and soft foods, but anything else seems to hurt when it goes down. I knew this could potentially happen.