Sunday, October 04, 2009

In the 8ww

The 2ww is a term familiar to people trying to conceive a baby, especially those who are battling infertility. 2ww stands for 2 week wait, which is the period of time between when a woman ovulates and when her period is due. It's the time when she wonders and worries if this time will be successful, or if she is back to square one.

Right now in the Monahan house we are experiencing a similar phenomenon, which I am calling the eight week wait, or 8ww. I have scans - so many scans! - scheduled for the week of November 16. I will have another brain MRI, a chest CT and then MRIs of the abdomen and pelvis. The idea is for us to have results before Thanksgiving, which is the 26th. If the results are positive, then I start round 2, cycle 1 on November 30, and round 2, cycle 2 on December 14. If the results don't show either stability or improvement, then my trips to Columbus will be over, and I will be back to square one, as it were, back in Cleveland. As there are lots of other options, it won't be the end of the line, but I sure hope that all the yuckiness I have gone through will prove to have been for something.

Last week in the hospital proved to me that you can't predict how you will react to an IL-2 cycle based on past cycles. It started out different in a good way because Jim accompanied me for the duration. It was wonderful to have him there to help me with small things and to hug when I needed one. I still get teary thinking of his kindness during my stay. Yes, he is my husband so it should be 'expected' of him to take care of me, but I was at first fighting my desire to have him with me against my desire to keep the girls' routines as similar as possible. Actually, staying at their grandparents' house the whole time I was away was probably the best thing for them. Grandma and Grandpa were wonderful with them, and while the girls tired them out, they enjoyed keeping them as much as the girls enjoyed staying there. Our dogs stayed at a kennel this time, which I think bothered Bailey in particular. Jim brought them home the morning after we returned. Trixie came right up to see me, her whole butt wiggling. Bailey came upstairs, looked in the bedroom door at me, and, ignoring my calls, turned around and went back downstairs. COLD! He got friendly again later on when he realized that he could nap on the bed with me.

But back to The James... we didn't have any crazy surprises this time, so we were able to get in to my room (actually a semi-private again at first) right away and were on schedule to get my first dose at 2PM. We hadn't eaten lunch, and had very little breakfast, so Jim went down to the Wendy's located in the hospital (it is Columbus, home of founder Dave Thomas) and got me a chili and a baked potato. Got my first dose of IL-2, along with demerol, tylenol and compazine. Well guess what... even though I never vomited during cycle 1, the trend didn't continue with cycle 2. Suffice it to say that I won't be ordering Wendy's chili for quite some time. My poor roommate had to smell our lunch, which made her nauseous, then listen to me retch. Meanwhile she was going through her own stuff. Luckily for both of us, a private room became available later that day so we were able to move. After this, it all becomes a bit hazy for me. I was alert a lot, and had visits from my Columbus friends, but felt very flu-ish the whole time. Then the bottom fell out... or actually my blood pressure. I remember them saying that it was as low as 60/30, though Jim says it was actually a bit lower than that... scary. I didn't realize it at the time, but they almost moved me to ICU. Fortunately they were able to bring my pressure up enough to keep me out of ICU. So, I had a grand total of 4 doses this cycle. I am not happy about that; since I had 7 last time I had a total of 11 out of 24. Rationally I know that if it is going to work, that this may be the amount I needed, but still I worry that I didn't get enough.

We got home on Monday evening and my in-laws brought the girls home. It was so great to see them but I was feeling so tired and sick that it was hard to enjoy them. The last several days have been a bit of a blur. I have felt absolutely crappy. After the first cycle I was a bit sick but this was definitely cumulatively worse. I have also been much more nauseated this time. Fortunately I asked for a prescription for Compazine when I was discharged; I thought I might only need it once or twice, but have taken it just about daily. I have been napping, still not as much as I should but more than I did last time, since I know I overdid things last time. Like the day before starting treatment, I used the push mower to cut the front lawn and part of the back. Stupid! About 1/2 way through I felt awful, but kept going. I will not be running a lawn mower again this year.

I'm looking forward to having energy again; it's coming back though more slowly than I had anticipated. As I feel better, I also feel more optimistic about the future, whether the IL-2 works or not. When I was in the hospital and when I first got home, I felt very pessimistic, which led to a lot of crying either alone or with Jim, who just let me vent, bless his heart. I have to keep fighting; I don't think it is fair to leave my girls with no mom at such a young age. And I want to enjoy some retirement years with my sweetie.

I pray a lot, too, which opens up a big issue for me. When I talk to God I ask him to please let me live a long and healthy life. I even tell him how unfair I feel it would be for me to not see my babies grow up. But then I think of the phrase "if it is your will" and that makes me so upset. I don't WANT it to be God's will for me to die early! Of course nobody does, but I can only think about myself at this point, right? I just can't feel okay with dying young, at least not right now. A family member was kind enough to talk to the priests at my parish about praying for me; this made me think maybe I should talk to one of them. Unfortunately, I don't know if they can change my feelings on this subject. It's too emotional right now - I have cried pretty much the whole time I have been writing this paragraph.

In short, I'm a mess. Hoping to clean things up sooner than later.

2 comments:

Roxanne said...

I too was diagnosed w/ rcc and had a radical nephrectomy in March '08. I felt (still do) the same way about "if it is your will" or "your will be done" when praying to God for a complete cure. Especially when someone else prayed it for me (it's like it canceled the prayer out - how silly you get when going through a gamut of emotions). Now I pray for peace, comfort and strength for whatever comes my way. I pray that sweet Jesus will let me give everything and surrender all to him.

I've been following your blog for a while, I've been saying the same prayer for you. I have 3 kids (9, 7, and 7). A book that really helped me is "When God and Cancer Meet" (you can find it on Amazon).

God bless you!

Roxanne

onesillymama said...

Roxanne, thanks for your comments - it's nice to know that someone understands what I am feeling. I especially like the idea of canceling the prayer out!

Thanks for the book recommendation - I will look it up. And I will add you to my prayer list as well - your young family deserves to have you with them for as long as possible, too!

Liz