CT's and Fatigue

Although my fevers have been more controlled this week, I have still been feeling very fatigued. It could be due to the fact that I was quite anemic the last time I had my blood drawn, but whatever it is I'm barely able to make it through the workday. I usually sleep all the way home while Chris is driving and the last two days I've had to take a nap as soon as I get home before starting to cook dinner.

Monday was quite a long day. My CT at Stanford wasn't scheduled until 9:30pm so we went over to Stanford mall for a few hours and then went to Chris' mom's house until it was time for my appointment. Fortunately I was seen right away, the IV was successful/painless, and I was out within 20 minutes. I was worried about getting a rash again since the last time I had contrast with my CT I broke out in hives, but I was fine the next day. Who knows what caused the allergic reaction last time...

The radiologist said that my doctor would be able to see the films the following day, however when I called and talked to my NP on Tuesday, she said they would take a look at them Wednesday morning/afternoon. Of course today I was a nervous wreck throughout the day. I kept debating whether to call or not to get the results. I finally heard back from my NP and oncologist around 4:30pm. They told me that my CT looked good and they were happy with the results. Both the mediastinal mass and some of the nodules in my lungs showed considerable shrinkage and the lesion in my liver is down to 1/4 of the size it was when it was first found. They're still expecting that the radiation will have more effect within the next few weeks/months. Again, we don't know if it's the radiation, Procarbazine, or a combination of both that is resulting in the shrinkage.

As it turns out, the orders for the head portion of the CT were not received in time, so that part was not done. I will have to go back tomorrow at 9:30pm to have that portion done. Now that my disease seems to be under control again, the fevers are becoming a bigger mystery. Although a sinus infection is unlikely the cause, they want to rule out the possibility. I'm also scheduled to see the infectious disease specialist on Friday morning to go over the remainder of all the blood tests that I had done two weeks ago and go over the lung portion of the CT scan. I will then know if I have to go on the IV anti-fungal medication for the next few weeks.

Feeling Better

I'm feeling much better this weekend compared to last. The fevers seem to be under control and I'm back to my routine of having them on non-prednisone days. I received most of the results of all my blood tests on Wednesday when I saw my oncologist. The blood cultures were negative along with everything else that was ran (there were two still pending). My CT is scheduled for this coming Monday at 9:30pm. I should hopefully get the results of the scan sometime next week.

My hemoglobin was a little low this time, so I'm back on my weekly Procrit shots. Besides that, I got the okay to do my two weeks of chemo again. I also got my infusion of Zometa again for my bones.

Things at home have been a little crazy with Francesca. Her big sister Pebbles has been a great teacher and therefore is learning things much better than we anticipated. She loves to play and bite on EVERYTHING.

A Rough Weekend

This weekend was quite the adventure. Everything started falling apart Friday evening after work...

Friday morning I went to see the infectious disease specialist that my oncologist had referred me to. It was a two hour appointment going over my history since I was diagnosed with NHL. Basically the fellow and attending were trying to think of any possible reasoning behind my fevers. There were two things that they were concerned about - a recurrence of aspergillus in my lungs (fungal infection) and/or an infection in my Hickman catheter.

I had stopped taking Voriconazole (anti-fungal drug) a few weeks ago, because I don't like taking it and it's hard on your liver. Well little did I know that all the work we're doing on the house (dust, mold) increases my chances of getting aspergillus and I should NOT have gone off of it. I was instructed to take it again immediately starting that night. In addition, they scheduled a head/chest CT to see if there is any change in my lungs which could indicate a recurrence of aspergillus. If that is the case, I will have to go back on a daily anti-fungal medication that is administered IV. I would have to do it myself once a day as I did before the last time I was admitted to Stanford. The head part of the CT is to see if I have some type of sinus infection since my nose is constantly running. Although unlikely, this could also cause fevers. A set of blood cultures and many other blood tests were also ordered to eliminate some other possibilities for the fevers. I was told I had to go back that evening for all the blood work.

Friday after work I was back at Stanford. The nurse drew four huge vials of blood (both from my catheter and arm) for the cultures and about 8-10 small vials for the remainder tests. Not sure how I had any blood left. I was told I would be able to get the results by this Tuesday.

About an hour after having the blood drawn, I started experiencing major chills/rigors. I took Tylenol since I could anticipate a fever approaching. By midnight, my temperature was above 38.0C and climbing. We had to wake up at 3:30am to take my dad to Oakland airport and then to drive to LA to pick up Francesca, so I knew it was going to be tough. By 2am my fever was 39.4C (approx 103F) and I was feeling VERY miserable. I had been taking Tylenol every 4 hours and the fevers were not going down. Regardless, I got up at the time necessary and got ready for our long day. We re-evaluated after dropping my dad off at the airport and decided to take the chance and drive down to LA. I slept most of the way down in the car while Chris drove and fortunately my temperature started to go down. We arrived in LA around 11am, picked up Francesca at 1:30pm, were on our way back home at 3pm, and got home around 8pm. I was feeling well enough by the afternoon to drive most of the way home.

Saturday night I continued to have high fevers, however they were controlled by the Tylenol. The lack of sleep came from our first night with Francesca...oh the joy of having a puppy in the house again. I took one last dose of Tylenol Sunday morning around 6am and as of this evening I haven't had to take any again. I'm hoping that starting back on the Voriconazole is helping. The last thing I want is my Hickman to be pulled for unnecessary reasons.

Tomorrow, Tuesday, I'm scheduled to have my regular labs drawn to continue with chemo. Wednesday I'll see my oncologist and start back my two week of regimen of Procarbazine. No word yet on what day the CT will be.

Too Much Sun

This past weekend I went on a shopping adventure trying to find a pair of shorts now that the weather is starting to warm up. After many hours of looking I finally found one pair. I was so happy about findiding them that I think I got a little too much sun on Sunday. I'm usually not one to burn easily, but since my 2nd transplant I think I've become highly senstive to any sun exposure. One of my leg's ended up getting burnt pretty bad and by Sunday evening I had a pretty high fever. I had fevers through the night and Monday morning woke up feeling terrible. I called in sick to work and stayed in bed until about noon. I finally started to feel better yesterday afternoon although I've had to stay on Tylenol to keep the fevers stable. I guess I learned my lesson about staying out in the sun!

Francesca

We spent last weekend in LA. We flew down Saturday afternoon and came back Monday night. We spent most of the weekend hanging out with our friend Kristine from college. It was nice to just relax and catch up. The last time we were down there was the time I got GVHD, it's hard to believe that it's already been a year since that whole incident. We did get to go to Huntington Beach, the Irvine Spectrum, SouthCoast Plaza, 3rd Street Promenade, and the King's Hawaiian Bakery.

Chris and I have decided to add a new member to our family. We have been thinking about it for quite some time now and the right opporunity finally came up. I first fell in love with a Frenchie (French bulldog) when Martha Stewart's show first aired last year. She has a brindle color Frenchie named Francesca who is absolutely adorable. Our little Francesca was born on March 24th and is living in LA right now w/her mom, dad, and five brothers/sisters. We got to visit her twice last weekend when we were down there. We will be driving down to pick her up this coming Saturday. We're both very excited as well as Pebbles, Whitesox, Gizmo, and Suki-chan. I think they will be happy to have a little sister to play with when we're not around. Below are some pictures that I took of Francesca last weekend.

This week is an "off chemo" week for me so I have been feeling pretty well. I still have fevers on non-prednisone days of course. This coming Friday I have an appointment with an infectious disease specialist at Stanford. I haven't seen this particular doctor before, but he works with many oncology patients and comes highly recommended by my oncologist.