Tuesday, February 22, 2011

Day 4 Post Treatment

I finally felt like myself today. I definitely had to eat when I woke up, but after that it was pretty smooth sailing. I definitely had more energy and I didn't feel sick to my stomach, which just makes it so much easier to get things done. It was quite a productive day. The baby very nicely took her morning nap (I think she is finally settling down after weaning), and my parents came so we could do some errands. The baby wears cloth diapers, and they had some crazy residue going on, so we drove down to diaper lab to pick up some stripping detergent. From there, we went up to Ipswich to Appleton Farms to pick up some bones and liver for the baby formula I make. It was a bit disastrous getting there (I got bad directions online and almost ran out of gas), but once we found it, we were amazed. The woman who met us was so sweet, and got us plenty of supplies for the rest of the month. I can't wait until they open for real in the summer to check out what they have there. It seems like a great place. It was just great to go and get things done and get out of the house. I am glad that I'm back to feeling somewhat normal. Hopefully I can get some stuff done around the house at the end of this week. My blood counts will be lowest 7-10 days after my treatment, so I'll be "quarantined" in my house. My plan - get some of this stuff organized!
Before my next treatment I will be having a Portacath put in my chest. This will make it much easier to receive treatment each time, and it means I won't have to sit there and hope they can get an IV in me (I hate needles, and I have tiny veins). It is day surgery, but I think it will make the process a lot easier in the long run. I was debating it at first, but when they had to run one of the drugs into my vein so slowly because it was irritating my arm, I decided I'd rather have the portacath in for 6 months, than loose that much time over the course of treatment. Hopefully it will make my treatments smoother and easier over all. I guess I'll find out soon enough. 

Day 3 Post Treatment

So, I forgot to post last night, but this is just as good. Yesterday was much better than Sunday. I still didn't feel like myself, but I didn't feel as sick as the day before. I was able to eat more normally, which I think helped to make my stomach feel less icky. We even had some friends come over and visit, which was nice. They brought a juicer and some great veggies and fruits to make some fresh juice. I'm excited about that. I was still feeling a bit tired, but napping helps. Also, because I weaned the baby so quickly, I've been a bit engorged and uncomfortable. Hopefully that will go away soon. I'll have to eat some sage and take a nice hot shower. 
This morning I'm feeling a lot better, but I'll post about that later. 

Sunday, February 20, 2011

Day 2 Post Treatment

Today I felt a bit more sick than yesterday. My stomach was easily turned, however I was never so sick that I felt like I needed extra meds. I took my pills as usual, and my  parents came over to help with the house and the baby. They have been such a big help. I was really able to just sit and be calm for most of the day. I didn't have much of an appetite, but I ate 4 small meals and a couple of snacks throughout the day. I think it helped to stave off the nausea. In the early afternoon I was quite tired, so I was able to take a nap, and it definitely helped. I have been a bit constipated all day, which I am definitely not used to, and I think this contributed a lot to the general "icky" feeling I had. Hopefully tomorrow (after a couple overnight pills) I will be able to "move past" the icky, and move toward the feeling better. Tomorrow could go either way, but I'm hoping that it will be better and I can start getting back into the "normal" routine. This first round of treatment is the big mystery - after this hopefully I will be able to predict a general "schedule" of how I will feel. Then I may be able to actually plan some play dates with the baby! 

Saturday, February 19, 2011

Day 1 Post Treatment

Today was my first day after treatment. This morning I felt quite good, and went about my business as usual. I have a few post meds to take, and I have been taking those all day, mostly to ward off nausea and prevent infections. I went out with my family to drive my grandmother to my uncle's house, and had a nice lunch out with my parents. When we came home I was feeling a bit tired, so I went up and took a nap while my parents stayed with the baby. I slept for about two hours, and got up feeling a bit chilled. I had a slight temp, but not high enough yet to call in, so I took a Tylenol and then sat down with a blanket. I fed the baby and snuggled with her. This always makes me feel better. My loving husband made me some soup, and that warmed me up from the inside. According to the thermometer, my temp had gone up a bit, but I decided to take it again in a bit so that I wasn't still all hot from hot soup. Temp went down, thank goodness, so I'm just waiting to take my last post med at 10 and then I'm off to bed. Hopefully the baby will agree with sleeping tonight and stay in bed until 6 at least. We'll see if the side effects hit me more tomorrow. Now all I have to do is figure out how to get my tons of phone calls made. 

Friday, February 18, 2011

Treatment Day One

I had my first round of Chemotherapy today. I was very nervous going there. I just had no idea what to expect. I received treatment at Addison Gilbert Hospital in Gloucester, and their new treatment facility is amazing. It's comfortable and open and inviting, and it has an amazing view of the ocean! My nurse, Chris, was wonderful. She went over everything in detail and made me as comfortable as possible. The first three medicines when in fine, no discomfort. The last medicine (the D in the ABVD regimen that I'm on) went in kind of rough. She started slow, and it seemed ok, so she bumped it up a bit, but my vein got really sore so she had to slow it down quite a bit. It just meant I had to be there for a bit longer. She recommended that I try and get a port put in my chest to make treatments quicker and easier. I will be calling my oncologist on Tuesday to see when the best time would be for me to have it done. I think it's a good idea. I don't like being stuck with needles anyway, and it would mean that I could have my hands a bit more free to do some knitting and crocheting while I'm there for my treatments. 
One thing that surprised me the most was how many medicines I have to take just to ward off the side effects. I think there are 4 different pills and one drink (not including the birth control) that I have to take every day for the first few days after my treatment. I'm hoping that by taking them all this round, I can figure out which ones are helping the best and which ones I can take less of and still avoid the side effects. 
The next couple of days are supposed to be the worst for side effects, so Chris advised me to get a little help with the baby and to take it easy; plus one of the meds will make me feel just sort of relaxed and not wanting to move much. With a cruising 8 and a half month old, that won't fly. So my parents are on duty this weekend. We'll see how it goes. Maybe I'll be lucky and manage to stave off some of the side effects. There's always hoping. 

Wednesday, February 16, 2011

Chaos in Phone Calls

Things have been progressing, but they seemed to come to a standstill on Tuesday. On Monday I had an appointment with a hematologist in Boston, just to have a second look at the pathology. He agreed on the course of treatment, and agreed that I should start treatment asap. I called my oncologist's office on Tuesday to get the treatment ball rolling, but their computer systems were down all day, and I didn't get anywhere other than the promise of a call on Wednesday. That call didn't come until 1:30 in the afternoon. Trying to schedule final tests, blood counts, and 5 hour chemo sessions all in two days seemed like an impossibility. But, it seems like things are going to fall into place. I have a blood test and CT tomorrow, as well as a meeting with the research nurse who is going to go over all my paperwork for the clinical trial in which I'll be participating. Then, hopefully, Friday is the day that treatment will start. I figure the sooner I start, the sooner I'm done. More info tomorrow, but hopefully things will go as planned. 

Saturday, February 12, 2011

A Little Good News

I received the results of my bone marrow biopsy on Friday. Luckily for me, my bone marrow did NOT show Hodgkin's. In the past three weeks, I have gotten so much negative news, that this news just felt like such a victory, albeit a small one. With this news, I have been staged as Stage 3 B. Most of my swollen lymph nodes are in my chest and neck, however I have some cancer in the nodes just below my diaphragm in my belly, and my spleen is involved (although not enlarged which is good). Although this is still late stage, and I have some negative factors in my blood counts, the fact that no other organs are involved so far is a very good thing. I'm trying to stay as positive as possible, but the reality of starting treatment has me a bit scared. I will most likely be starting treatment the end of this coming week, and I think my biggest fear is not knowing what to expect. Everyone reacts so differently to the treatments, that you can't be sure how your body is going to respond. I'm trying to just think about getting better, and not about how I'm going to get there. I have an appointment with a doctor at Beth Israel Hospital in Boston on Monday for a second opinion on treatment, and to find out if I qualify for, or should consider, any clinical trials. After that, I'll be starting treatment. 

Tuesday, February 8, 2011

Bone Marrow Biopsy

Today I had my second oncology appointment, and I had a scheduled bone marrow biopsy. Personally, I was kind of dreading the procedure. Not really for the actual biopsy, because I had no idea what that would feel like, but I hate Novocain. (I'm the kind of girl who gets her teeth drilled at the dentist without it.) The procedure didn't take that long, but it was very uncomfortable. I'm not sure exactly what goes on, because I didn't dare to look (and I really don't want to know), but it was definitely not something I want to do every day. Just as I thought, the first shot of anesthetic was awful; it burns. Once that settled in, it was ok for a bit. Then she went to draw the marrow. You know when you have a sore tooth, and then something ice cold hits it and you get that shooting pain? That's a pretty good description. Thank goodness she only had to do it twice. I would say, all in all, not much more painful than a dentist appointment. The very awkward, dull ache afterwards, however, is a strange thing to deal with. The cut in the skin is no worse than a razor cut (I used to be a picture framer, I got these a lot, hence my analogy), but the hole they made in the bone, is definitely there. They say there are no nerves in bones and therefore bone pain doesn't exist, but I can certainly feel something. Sitting today became an art form, and stairs made me feel like an old lady. The ache has gotten better over the day, and hopefully will only last for maybe one more. I have an appointment on Friday to get results and (I think) a final stage. Then will come the treatment options and plans. But ahh, that is for another day. 

Friday, February 4, 2011

A side note about baby formula

   I currently breastfeed my little girl full time (she's never had formula), so I didn't know much about commercial formula. When I do start my treatments, I will have to stop breastfeeding to prevent the medicines from transferring to the baby. I have been on a restricted dairy diet since she was a week old, because she is sensitive to the proteins, so I grabbed a sample tin of soy formula from my mom's group and brought it home. Then I looked at the ingredients.... the first ingredient, making up over 43% of the powder, is CORN SYRUP SOLIDS! What? Corn? This seemed ridiculous. I don't eat anywhere near 43% corn in my diet. So my dad said, "can't you make your own? you make her food anyway." I hadn't even thought of this! I looked it up, and yes, I can make my own. And after doing some research, I found that it's almost the exact same price! Strangely enough the dairy free recipe is made from beef broth and liver, but hey, if it's nutritionally parallel, it has to be better than almost half corn. (There are raw milk and raw goat's milk recipes as well, but I figure I'll avoid the casein until she's one and then switch her to raw goat's milk.) I'll put the link to the site I found the recipe below just because it is really interesting. It may take a bit more work each day (a whopping 15 minutes), but I think it's totally worth it to avoid the insane amounts of corn sugar. 


And the Testing Begins!

   I start my first round of testing tomorrow for my staging. I met with my new oncologist last Wednesday, and so far I'm impressed. I really like her style - very explanatory, perfectly happy to answer any questions, and most importantly - SHE REALLY LISTENS! In this whole process so far, she has been the only doctor and office to be sure to share with the testing facilities that I am nursing a baby! This is so important to me, and to find a doctor and office that is completely understanding of how important it is seems like a miracle. The barrage of testing starts off with a full body PET scan. I get to be radioactive for a day, which means a) no nursing for 24 hrs (I knew this was coming) and b) I can't touch my baby for a certain number of hours (to be told to me upon discharge) afterwards. This I was not aware of and was very glad that the woman at the PET center knew to make me aware of it (This is one reason I'm so glad that my nursing status was shared). Next comes an Echocardiogram on Monday, a bone marrow biopsy on Tuesday, and a pulmonary test on Wednesday. After all that, hopefully they will have all they need. 
   Well, at least the baby will have fun on her Grammy and Grampa outing all day tomorrow. I know my dad is very excited. Hopefully she will sleep well and not be too cranky.