3 treatments to go!!! Yeah!

I haven't updated my blog (and never got around to starting that new one). I've been feeling very rough lately and haven't had the energy to update as much. I've been considering the day a "success" if I don't spend the whole day/night in bed!! Yesterday, I spent most of the day in bed and finally gave up at 7:00, took a benadryl, and went to bed for the night. Today is the best day I've had in awhile. I attibute a lot of it to seeing my acupuncturist this afternoon. She has really helped me in managing my side effects, especially the headaches. After I see her, they are gone for about a week! I have a lot of weakness in my legs and feel SO incredibly fatigued every day. And, the lovely flu-like symptoms are just so much fun... they typically hit me late afternoon- early evening. But, the GOOD news... only THREE treatments to go and then we're headed to Florida... Magic Kingdom, Epcot, Sea World, the SPA (just Todd and I, of course), the pool, and most importantly, lots of warm weather and relaxation! :) I'm not going to start my shots until I get back from our trip, so I'm SO looking forward to having the week off! The shots will be half of my current dosage, three times a week. I will do the shots before bed, so hopefully, I sleep through the side effects. I don't know what I will do being away from UW Hospital for a whole week! Since my surgery, in December, I have been at the doctor, for a follow-up appt., random doctor's visits, scans, lab work, physical therapy, radiation treatment, or chemo clinic, almost every single day!! I can't wait to wake up in the morning and NOT have to drive to the hospital!!! I promise that I will be spending some mornings bumming around in my pajamas with my coffee, for sure!

So, right now, my focus is on getting through these last 3 treatments and then time to CELEBRATE!!! :)

Kim

Update/ New blog

I am going to start a new blog on a website called Caring Bridge. You will be able to be notified each time I update the blog on that site. I will post the address here when I get it set up.

To give you a very brief update... my labs looked great on Friday. It seems that my body is tolerating this new dose better. So, hopefully, things will be smooth sailing the next two weeks. (We're planning to still go to Florida, just a couple days later than originally planned.) Side effects were not fun, but manageable... fever, body aches and chills. My headaches are GONE, thanks to the acpuncturist I've been seeing! YEAH! :)

O.K., I'm going to go enjoy the beautiful weather with the family, but wanted to give a quick update! :)

Kim

one last thing

I didn't post on Friday, but my liver functions were getting back to normal... one was back in the normal range and the other was still on the high side, but probably back to normal by today. He's not going to check my labs again until Friday. They also decided to leave the IV in... they will take it out and reinsert a new one every 2-3 days. They had to poke me three times today, which is really annoying and painful. They can only do IV's on my left arm (they can't do any needle pokes in my right arm due to having my lymph nodes removed). So, hopefully, my hands and arms won't be covered with bruises with now!! :)

Kim

Back on the train...

I started my treatment back up today. It still blows me away that I have to WAIT SO LONG! Today, I was there for 3 hours for a 20 minute infusion! But, the good news is that my side effects haven't been too bad today. I was worried that it was going to be like starting over after having a week off. I have a mild headache and generally feel a little achey in my joints. But, it's managable! He reduced my dosage by 1/3, so I'm hoping my body tolerates the rest of the treatment better this time around. I will keep you updated! :)

Kim

same old, same old...

No treatment again today... my liver functions are going down, but still not in the safe zone. Will go back on Friday to check them again. Needless to say, I feel very frustrated to miss an entire week of treatments and have to start over again. I will keep you updated...

Kim

update from Albertini

After I posted, I got a call from Dr. Albertini to discuss my liver function. He doubts that things will be in a safe zone for treatment by Wed. I will go in for my labs on Wed. and then, most likely, come back again on Friday, to recheck again. When we do resume treatment, he will cut the dosage back by a third. The current dosage is obivously just too toxic for my body.

So, now I'm looking at no treatment all week! This is bad because now we're starting to talk about how to make up that time... and the obvious option is to keep going when our trip to Florida is scheduled. I just want to be DONE! I don't want to sit and wait around for my numbers to get back to normal!!! I feel very discouraged and frustrated!

Kim

Set back...

When I went in today, I had labs done to recheck my levels. I was told that we need to hold off on my treatment for two days. My white blood cell count was back up, which was good. But, even without the treatment all weekend, my liver functions continued to go up and were higher than they were on Friday. I talked to the nurse about it and she said that Interferon is really hard on the liver and it is not at all uncommon to have to miss a treatment or two because your liver functions are up. She made it sound like this is pretty normal. It's still frustrating, though. Most likely, they will lower my dosage in the hopes that my body will better tolerate the Inteferon. There is nothing I can do to get my liver functions to return to normal... except make adjustments to the treatment.

So, for now, I am just going to try to enjoy having a couple days off and not worry too much about what the numbers say. I am also meeting with an Acupuncturist tomorrow to get some help in managing the side effects.

Kim

Another long day...

I was so looking forward to posting about how things continued to improve and that I was handling the side effects quite well. Yesterday, no headache, no body aches, no chills, or fever! Just tired, really! The only new thing is that the treatment is causing me to have this constant bad taste in my mouth and I'm having a lot of food aversions.

Well, today, I went in for my treatment and had my labs done. When I met with Dr. Albertini, he said my white blood cell count was low.... low enough that they almost didn't do my treatment today. They decided I was still in the safe zone and since I seemed to be feeling well (and I looked well!), they decided to go ahead and give me the treatment. Well, I ended up at UW for over 5 hours again today! Aargh!!! Then, when I got home, Dr. Albertini called and said my liver function was high, too! So, he's cut me back to regular tylenol. The hope is that I won't need to take any medication this weekend and all my levels will get back to normal by Monday. They will be rechecking my levels again on Monday. But, due to my white blood cell count, I'm more susceptible to illness and infection... and am not able to fight it off on my own. So, if I get a fever of 101, it's an automatic hospital stay with IV antibiotics. So, I will be staying home all weekend while Todd sanitizes our house! :)

On another interesting note, my doctors told me that a study was just released last week that studied the 1 month Inteferon course of treatment vs. the 1 month plus the year of Interferon injections. The study found that there was no significant difference in outcome for patients! What does this mean? It means that my doctors are looking very closely at this study to determine if there is any significant benefit to doing the Inteferon injections for a year. Dr. Albertini is in charge of reviewing and suggesting policy changes for his department. So, we'll see what happens. It might just turn out that I am done with treatment in 3 weeks!!!

Please send lots of immune-boosting vibes and prayers my way this weekend! I am so happy for two days off!!!! :)

Kim

Day 4: Things are getting better!

So, I am happy to say that things seem to be getting a bit easier every day! Yeah! I'm still dealing with the headaches, which is the hardest part. And, I still have the body aches and chills. But, they seem to come in waves now with periods of relief in between. I'm also tired after the treatments, but I've been able to get in some time to rest each day. But, the good news, is I don't feel like I am bedridden and I can get up and actually function... and be a mom! :)

I was SOOOO happy today... my treatment went smoothly and quickly (and they didn't even have to poke me 3 times to get the IV in like yesterday!). We were out of there in just over an hour! I can't tell you how much that boosted my spirits today. :) I am so happy tomorrow is my last day of treatment of the week... 3 more weeks to go! Fridays will be my long days because I have labs, wait for lab results, meet with Dr. Albertini, and then have my treatment. I will probably be there for at least 4 hours on Fridays.

So, it was a good morning and I hope I feel good for the rest of the day today!!! :) I'm SOOOO looking forward to enjoying every minute of my weekend!!!!!

xoxo
Kim

Day Two...

So, I will say that, overall, today has gone much better than yesterday! I was only there for about 2 1/2 hours today. The treatment hit me harder and faster today, though. It starts with a headache... I can feel my head start to throb during the infusion. Then, the body aches and chills start. By the time I left today, I hurt from the top of my head to my toes. The nurse commented today that Intferon was one of the hardest chemos (nice, huh?). It was difficult leaving the hospital today. I was in so much pain. But, I did talk to my doctors about finding ways to better manage the side effects. They wanted to give me narcotics to deal with the headaches and body aches, but I have such a bad reaction (nausea/vomiting) to narcotics that I don't want to use them. They told me I can start taking extra strength Tylenol and Aleve for the headaches. I took these when I got home and they helped tremendously! My pain wasn't totally alleviated, but I wasn't bedridden!!! I even had the energy to pick Avery up from school! My fever has been lower today, too (99-100). I think, as time goes on and I know how my body responds to the treatment, I will hopefully be able to take my medications and stay on top of the pain. The headaches are really the worst side effect so far. My mom found these awesome Migraine cooling strips that stick to your head and they have been my lifesaver. They instantly soothe my headache and last for 8 hours!!! I am SOOO happy someone invented these things! :)

Todd and my mom have been so supportive in helping me cope with all of this. And, of course, the loving and supportive messages from friends and family, too! I know I just need to get through each day and each week! I trick myself by saying, "I'm already half way through the first week tomorrow! Only 3 weeks to go after this one!" Despite the pain, I'm trying to stay positive. Of course, I worry most about how it affects the kids to see Mommy sick. They seem pretty resiliant and unconcerned so far. Avery was really itching to go somewhere after school today and my mom took the kids to Westgate to do some shopping, vist the fossil shop and eat dinner. (I had to call my Mom to let her know that the kids normally go to bed at 7:00!) Drew's 4th birthday is tomorrow and I'm hoping to have a better day tomorrow so we can celebrate his b-day (we had his party last weekend).

Please continue to send lots of positive, healing vibes and prayers our way! Love to all...

Kim

amazed...

Minutes after posting (even if you all hadn't read my message yet), my fever dropped to 99! :) So, no trip to the hospital for me... at least for now. Please continue to send lots of healing energy and prayers my way... and a restful, peaceful, fever-free sleep!

Kim

Need some prayers and positive energy!

So, today didn't go as well as I had hoped. First of all, I was there for 4 hours (due to computer problems in the pharmacy). I then got a really bad headache during the inteferon infusion that has lasted (and gotten worse) all afternoon and evening. I also have chills and body aches. The biggest issue is my fever... 102 (with tylenol). I talked to the on-call doctor and if the fever doesn't come down with a second dose of tylenol, I will need to head to the hospital. She's concerned about infection. So, I'm trying everything to bring my fever down to avoid the hospital. But, I wanted to hop on here to ask you send me all your prayers and positive, healing energy tonight! Amazingly, since I found out about the potential hospital trip, my headache has gotten better (does adrenalin help headaches? Hmmm...). I will try to update you as soon as possible.

love,
Kim

Gearing up...

So, tomorrow is the start of my interferon treatment. I'm feeling as ready as I'll ever be. I'm surprisingly not nervous and feeling positive and calm about things. In fact, I seem to be more focused on how I'm going to make the most of my time at UW for the next month! lol! I'm going to pack my "treatment goody bag" with a good book (I'm conflicted about bringing my inspiring, spirtual, healing books or a trashy romance novel!! I'm leaning towards the latter), a big bottle of water (I'm supposed to drink 10-16 glasses of water a day while undergoing treatment!), the Ipod (what do your think... Dar Williams or an 80's mix? I heard 'Take on Me' yesterday.), some tylenol (to take while I'm there to help with side effects) and some healthy snacks... or even just pack breakfast to eat while I'm there! :) I'll probably run out of time to do all the fun things I want to do!

I'm also being realistic about the side effects. The nurse gave me a book about interferon... they certainly don't make it sound like a vacation! But, I'm just going into it expecting to not feel too bad. If I expect to feel horrible, I probably will! So, I'll just deal with the side effects as they come. I'm going to hopefully meet with an acupuncturist this week. I wanted to start the treatment first so I knew what I was dealing with.

My skin is slowly starting to heal from radiation. If it wasn't for this darn rash I have developed all over my back, I would be quite comfortable! My chest is already starting to look much better.

This weekend was really nice to relax and just spend time with the family. We had Drew's 4th birthday party on Sat. at the Little Gym and he had a great time (was I glad we paid someone else to manage seven 4-year olds!). And, his face was priceless when he got his new bike from mommy and daddy. Other than that, we just had a relaxing, laid back weekend, which was exactly what I wanted!! My mom also came up and is spending the week with us to help out with the kids during my first week of treatment. Todd is planning on coming to my appts. with me this week and my mom will watch Drew. Depending on how I feel in future weeks, I may take some of you up on your offers to come with me to my appts.

O.K., so I will keep you updated this week on how I'm feeling! Please send lots of strength, prayers and good vibes to help me get through this!

love,
Kim