COAP- Cycle 1

I have now had both infusions of my chemo, but I am still taking my prednisone until day 14, or 15 since I started a day late.

When I got home from my first infusion, on Valentine's, I just felt kind of drugged...high...kind of out of it.  It was a strange feeling to say the least.  That night, for some reason, I stayed up doing random searches on the computer.  I think I was trying to plan the wedding I still want to have. :) (I blame this on Sara for making me look at bridesmaid dresses.)  I also discovered that the girls Valentine's bouquet had both of their birth month flowers (not on purpose), so then I had to find out what the husband's and mine looked like when combined with the girls.  Just random, strange stuff...I think those drugs really gave me some kind of high.

For the next few days, I continued to have a kind of lightheaded, off-balance sort of feeling.  It is kind of hard to explain.  I took my temperature, since I had been having fevers previously, but they stopped.  Actually my temperature was low..like 96-97, but I felt fine.  The night sweats pretty much stopped also.  I still sweat, or maybe drain, at night, but not bad.  I am not waking up soaked, and the sheets don't really get wet at all. 

The large lump that I had under my underarm started going down right away, I think.  It is almost non-existent now, which I think is awesome considering it was the size of a walnut.  The doctor said the lump, or possibly multiple lumps, were blocking my lymphatic drainage because I was having strange swelling, or retention, on my left side.  As the lump has disappeared, so has this strange swelling. Yay!  Also, my rash, which the doctor doesn't believe is from my cancer, but I always get with my cancer, is gone.  My skin is nice and smooth again!

I was finally starting to feel right in the head again, then it was Thursday again, and time for another chemo. The second infusion didn't seem to make me as crazy.  I still felt pretty normal.  At least, until last night. At about 4:30, I smelt something that made me crave Chinese food.  I came downstairs and googled recipes for fried rice and teriyaki sauce and started cooking.  I was finished making, and even eating a little after 6, which is really strange for me.  I didn't get distracted...I was very focused on making that food.  And, it was delicious..at least it was exactly what I wanted. Yum!  I think the girls were a bit confused because we don't normally eat that early, but...

I am still trying to eat good, but it is harder.  Maybe it is the steroids, or whatever else they give me, but sometimes I just crave food and have to eat then. I guess I need to stock up on healthier snacks again.  I seem to be losing a little bit more weight, possibly because of the cancer or the treatment.  It is hard to tell you when I lost it because my scale at home hasn't been working, but when they weighed me on Thursday I was down to 138.  (Before diet I was weighing 170-175 and with diet I had gotten down to about 145.)

Thank you for your continued support and prayers. 

Valentine Chemo

Valentine's Day


Today I woke up already dreading having to go to chemo today, but...

I tried making the girls special Valentine pancakes...neither of them liked or wanted them...they wanted their regular pancakes. :(  Well, I tried.

Then I really just got the girls and I ready.  I packed the girls' lunches and dropped them of with the neighbor for their Valentine party and play date. :) And packed a to-go salad for me.

Then, off I went to get my new chemo.  I talked to the doctor and he explained that some of the drugs were different than the chemo regimen that we had previously discussed because these drugs are simply unavailable now; no longer made.  So instead of C-MOPP, I am on a regimen of COAP; Cyclophosphamide, Vincristine(Onocovin), Cytarabine(ARA-C), and Prednisone.  My chemo cycles are 28 days long.  I have chemo treatments on day 1 (today) and day 8 (next Thursday), then they want me to go back to the office for a shot of Neulasta(just helps blood counts) on day 9.  So, chemo once a week for two weeks, off two weeks, repeat.  The predisone is a tablet I am supposed to take day 1-14.

I forgot to mention in my previous post that I am now having at least somewhat frequent fevers, mostly at night.  The nights that my fever are the highest, I have night sweats. Which means that I wake up 1-3 times throughout the night drenched; my clothes and the sheets below and on top of me soaked. Yuck!  So, I change my clothes and switch to the other side of the bed, hoping it doesn't happen again before I wake up.  Both the fever and night sweats are common for my lymphoma but...I think we are going to need a new mattress when this is over. :)

I think that is it for now...Thank you for your continued support, love, and prayers!

Update February 2013

Well I guess I need to write an update since some of you might be wondering what is going on with me.

I had to re-schedule my PET scan for December 15th.  I got the results a week or so later and the doctor said the cancer is still growing and spreading.  There were some new areas of activity.  One of those areas was my underarms, specifically my left side.  What is weird is that I felt a lump, but it just kind of came out of nowhere...it was large quickly...and painful, so I didn't really know that it was my lymphoma until the doctor confirmed it.  I was just thinking, "oh great, what else is wrong with me".

When the doctor told me my results, I asked if I could be re-biopsied.  I just wanted an additional confirmation that we were fighting the right disease.  So, mid-January (sorry don't remember the date) I went in to have a biopsy done.  They took a core needle biopsy from my painful underarm lymph node.  Which for some strange reason helped the lump to be less painful.

The same day as my biopsy, I also had a dye study done on my port.  I had started having pain when the nurses flushed my port.  When I went in early January to have my port flushed I warned to nurse and when she tried to push the saline in she said that it was hard to do.  She could also tell that it was quite painful for me and asked if it felt like pain or pressure, to which I answered pressure.  It is a strange feeling to try to explain but it hurt, believe me.  I am pretty tough and it was bringing tears to my eyes.  Because of this they ordered a dye study.  The dye study showed that my port catheter was blocked, by forcing dye and saline in my port, another painful experience.  At first they told me there was a hole and then that my lymphoma was pinching off the catheter, so....either way it was not functional.

The doctor spoke with me about what I wanted to do, as far as treatment.  He of course suggested beginning chemo again, and going with the regimen that he had spoke to me about before.  He also said that the port would need to come out, and he really wanted it to be replaced. 

So, last Friday, the 1st, I had a new port put in and the old one taken out.  I had some nice neighbors watch the girls for me and another one drive me and wait for me.  Thank you ladies very much!  The procedure took a little longer than expected, but turned out fine.  I am a little sore and stiff, but fine...as long as nothing touches my incision sites.  Of course with two little girls...let's just say I scream sometimes.

I have asked my doctor's office for a schedule of the chemo cycles, but the nurse said the doctor is no longer sure what cocktail he wants to start me on.  So...until then I am waiting.  My sweet neighbors have also volunteered to help with and watch the girls when I begin treatment.  I am extremely thankful for their help, especially since my husband is away for work for a few months.  Thank you again ladies!

So....that is it for now.  Thank you for your continued prayers and concern!  I will try to be better about updating.