Surrounded By Family Love

My parents are both still here, though my Dad has to leave today, boohoo. It is so nice to have them here. I feel so supported and surrounded by love when they are both here. Of course my Mom is wonderful just by herself, but I know it is nicer for her to have my Dad with her, so his presence is even more appreciated. And it is wonderful for Capt. Adorable to get to interact with his grandpa as well.

Speaking of Captain Adorable, last night it became obvious that he was teething and indeed, this morning we discovered that he has two more teeth bursting through his top gums. He now has 12 teeth! Of course, just like on the bottom, he has skipped the canines and has gone straight to pre-molars. We are going to have to buy some more Hylands...

My Dad has to leave today because he has to get home to take care of their house and their animals. They have 2 dogs and 2 cats and some kind friends have been taking good care of everything, but it is time for things to go back to normal. I do not know if I have mentioned that my parents live about 500 miles from my house. My mom is staying a few more days because I am still not quite up to being strong enough to be alone with the baby while Captain Obvious is at work all day. She will be back in time for the next treatment, of course...

Difficult Evening and Day

Last night I felt very sad and I cried some. I cried because we had some frozen pesto and I remembered harvesting the basil and making the pesto (sans cheese) for freezing. I had the baby in the mei tai and we went on the deck together while I picked and picked and picked those basil plants till I got all the leaves I could reasonably get off of them.

...

I am having a hard time writing this because I am so sick. I just threw up my entire dinner, which was bad because I had not eaten much and was really hungry for dinner. I had to eat a bit more just because I do not want to get the weak hunger that I sometimes get lately and also means I will throw up easily. I canceled my acupuncture appointment today because I threw up this afternoon.

...

Anyway, I was remembering how strong and happy I felt this summer, out on the deck, harvesting basil for cold winter evenings and I felt sad to be here in the cold winter, so depleted and vulnerable and feeling so unsure about everything. When Capt. Adorable was asleep, Capt. Obvious and I went and lay down in the little bed where I sleep and wept together. We cried because we don't know the future, because we have hope, because we have good memories, because we are very lucky but it sucks to be us right now, and because we both feel bad. I don't want to die and leave my baby. Capt. Obvious does not want me to die and be without his wife and Capt. Adorable's mother. I am not ready to die. But who knows how much choice I have? Perhaps the cancer is already taking hold somewhere inside my body? Or perhaps we are killing it all and I just have a scan every 3 months for the next two years to get through (and then every 4 months for the next year after that). This cancer and cancer treatment is not going to be out of my life for a good long while. I will not be able to forget about this for a long time to come.

And if I do have cancer, how much more of me can be whittled down? I am pretty young and healthy--I can probably stand a bunch more surgeries and a bunch more chemotherapy. How long can I go without having treatment? When do I get to start having fun again? Even though going to Ocean City was fun, the BIG CLOUD of chemo is never far away and never out of my thoughts.

Ah well, all this sorrow and worry is not very productive. Does not help to settle my stomach or help my mind not to go into panic when I think about the hospital. I can't even write thank-you notes recently because they are in the bag I always take to chemo and I can't stand that bag anymore. My Mom suggested maybe I should burn it when I am done with chemo. I am going to have to burn my purse, too, because the sight of each of them makes me queasy.

Just Tired

Have not posted because there is nothing to really say. I am tired. Very tired. I think it is true for me that each round of chemo has gotten tougher to deal with and this one is the toughest so far for sure. I am tired of feeling sick. I am really looking forward to this being over.

Both Captain Obvious and my Mom wanted me to get out of the house (and probably out of my pajamas) and so I went to see a movie with my husband this afternoon. Of course I thought about Captain Adorable the whole time. Once we were home, I ate dinner, played with the babe, and then got into clean pajamas and once he was done with his bath, put him to bed (sang him to sleep). I love feeling his little warm body relax and hearing his breath slow down and relax into that sleeping breathing pattern. So peaceful; so beautiful.

I am still too sick and too worried about getting up a lot to sleep in the family bed tonight. I probably could, but I do not want to risk waking the babe, who has been sleeping so well lately. So tonight I will sleep once more on the futon in the sewing room. A good bed for when I need it.

Third Round of Chemo Yesterday

My Dad took me to chemo on Friday and he was pretty good company. Chemo itself was horrible as always, but the aftermath at home was even worse. I threw up like 6-7 times and I had diarrhea. I finally had to take a suppository to stop the continual vomiting. Well, at least then the vomiting stopped and I did sleep like a rock all night. I still feel a bit nauseated today, but so far no vomiting. I have slept a bunch.

Captain Adorable did not sleep well yesterday (while I was at the hospital). He had less than 45 minutes for each nap (usually they are 1+ hour and 2 hours, in morning and afternoon, respectively). Fortunately, his night's sleep was good, and this morning, after quite a big deal of fussing, he got a 2 hour nap in the Ergo with Oma. I am so thankful that she gave that to him! When he is in the Ergo, she walks with him while he sleeps, so she read and took a 2 hour walk in the living room while he slept.

Sorry for not updating sooner, but we were busy vacationing (read: hanging out with my parents and relaxing) for me to spare a few minutes to write all about how fun I was having.

Captain Obvious's youngest brother is here for a visit during his winter break from school. He is a nice kid and I enjoy having him around. I just wish I did not feel so dang bad so I could interact with him and enjoy his visit more.

I just read that Jessica Quinn, the woman whom I talked about a few entries ago, has died. http://www.caringbridge.org/cb/viewJournal.do?method=executeInit I send my love to her family.

My Body Is Holding Up Well

I went to the oncologist on Monday and according to my blood tests, my body is holding up very very well under the stress of chemotherapy. The only number that is off is a number indicating that my liver is taking longer than normal to filter things out of my blood. The doctor says this is nothing to worry about, but is one of the reasons that I never drink alcohol these days. Of course, because we are now on vacation, I did ask permission to drink a (small) glass of champagne and she said that as long as it was small, that was ok. :)

So here we are in this fabulous hotel room with a lovely jacuzzi tub and I am planning to sit in it with my husband and have a glass of champagne! How much better can you get?

I had a nice day with Captain Adorable today. Captain Obvious forgot Something Very Important at home and actually had to drive back and get it (5 hours of driving), so I was alone with the babe for most of the day. I had a great time watching him walk around everywhere. It is so cool to watch him explore the hotel room and point out all the cords (sigh) that I would never notice. We did bring a child-safety device to keep the cabinet doors in the kitchenette closed, and we put the trash cans under there, so that is helpful. He was almost completely uninterested in his toys today--all he wanted was to check everything out! And, like I said, for me it was endlessly wonderful to watch his exploration and discovery. I also sat out in the hallway with him (the hotel is rather empty) because out there he can walk and walk forever and not get distracted by toys or cords or other things Mama won't allow him to touch. We had a few rounds of the "Do I have to come and get you?" game, which was great fun for us both.

He is so good at walking now, the only times he ends up on all fours are when 1) he does it on purpose or 2) he walks too fast and falls over. I assume this phase will pass all too soon and before I know it, he will be running.

My parents are here in the hotel, too. They have the room next to ours. It is so nice to have both of them here with us--makes the holiday even more fun. They arrived at about 1:45 and by 2:15 they and Captain Adorable and I were in the indoor pool. Captain Adorable liked it at first but then seemed to change his mind and got upset (to the point of tears) and I had to get out with him. We sat on a chaise on the side for a while and then we got back in. He seemed to like it more the second time. However, it was close to nap time, so we soon got out and went upstairs. He slept well (for both the morning and the afternoon nap) and had a nice afternoon/early evening hanging out with his grandparents while his parents went out to dinner together. He's asleep now. Another beautiful day with my beautiful boy!

Making Truffles

Tonight Captain Obvious and I are making truffles. If you've never made them before, you melt chocolate and mix it with cream and some sort of flavoring. Then you chill and shape into balls, then cover with chocolate and various toppings, like cocoa powder, or pistachios or almonds. Right now we are at the part where the truffles are in the refrigerator chilling, but soon we will be ready to gently heat the chocolate for the outer coating. Captain Obvious made peanut butter ones and I made chocolate ones with a little brandy. This is the first time we've tried making chocolate candies (or candies of any kind) so we will see how they come out.

Tomorrow I am going to meet a friend of mine for coffee in the morning. The time we've agreed to meet is kind of close to Captain Adorable's nap time but hopefully it will work out. I am also going to try to buy a bathing suit. Why, you might ask...well, we are going to Ocean City for a few days starting on Monday and the hotel where we are staying has an indoor pool. I think I am going to want to get in it with Captain Adorable, so I need to have a bathing suit. I am really looking forward to our trip. We are going to stay in the same hotel where we stayed when we went up there for Punkin Chunkin, so I know I like the place. This time will be even nicer because my parents are coming too. (They are getting their own room.) I think they will love being able to hear and see the ocean from their bed, plus I think it will be nice to hang out with them and do a little winter holiday gift exchange. :) No big gifts, just the candles and the happiness of being together.

Monday is also the day I am going to see my oncologist again. I am going to ask her about some of the non-traditional remedies I've heard so much about. I really hope she will let me take some other stuff because I need something to help me with the exhaustion and sickness, especially if my reaction is just going to get worse as the treatments continue.

Independant Play

Captain Adorable is very good at playing independently. He kind of amazes me with how focussed on a toy/object he can be. Right now he is playing with his jumper/exersaucer thing (not really either of those but I do not know what else to call it). We almost never put him inside but he plays with it a lot from around the outside. He pushes the buttons to make it play music, he chews on the gum-able sun, and he manipulates the little movable toys. The thing is big and plasticy but I really like it since he likes it so much. I just wish the toys faced out instead of in so he could see the face on the sun instead of the blank side.

I had an accupuncture session yesterday. I was feeling really good today, except now all of a sudden I feel totally nauseated. I will take an anti-nausea pill and hope to prevent anything unpleasant. I am going to have 2 more sessions, each the day before chemo. Nice how it worked out that way and I can go into chemo feeling a little stronger rather than weak and vulnerable. The accupuncturist worked on my back mostly and my left hand a little. She did needles in my back and then burned some moxa on four points on my back. She burned moxa on my hand and then put needles in those points. The needle in the back of my hand hurt--I guess she hit a nerve? Anyhow, I told her and she removed it right away. She tried to put it in a second time and it hurt even more, so that was the end of that attempt.

Thank you for the supportive comments, especially on posts where I am not all positive and chipper. It makes me feel so good to read kind words in response to my ramblings.

Thinking About Mortality

So, the day alone with Captain Adorable was lovely. I have no idea what I was nervous about. We were fine, hanging out together as per normal again. He was a little clingy, especially in the evening, which makes me think he missed his Oma (what we call my Mom). He had a great time in the bath and went to sleep easily and quickly.

Anyhow, the reason I wanted to post is because I have been thinking about mortality again lately. I visit an online community called motheringdotcommune a lot. I go there for advice on everything from toys for a one-year-old to teething pain solutions to breast feeding tips to the latest crazy thing someone's relative said. When I was diagnosed with cancer and found out I would have to have chemotherapy, I went there to ask about nursing and chemotherapy. A sweet, friendly woman responded to me and told me that one cannot nurse with chemotherapy and told me how she had to wean her first-born son when she discovered she had breast cancer. I got other advice from other sources, but her advice suck with me and I still remember some of the things she wrote. It is because of her advice that I started offering Captain Adorable a pacifier to help him nap without nursing. (He still uses the pacifier for naps...) So the point is, her cancer came back in a big way. And it looks like she's going to die. Really soon. Here's her story. Makes me think about my own chances for reoccurance and my own mortality.

I know, I know, be hopeful. Well, I am. But I also have sad thoughts (sometimes I am angry, too) and I think it is important to confront that kind of thought as well as embracing hopeful thoughts. I talked to a friend today who wanted to know how chemo was going, as in was it improving anything. Well, the answer there is difficult because of course in my case I have no lesions or nodules that are visible on the PET/CT scan or the MRI that I did in October. Its just supposed to be killing cancer cells which may (or may not) be in my blood. So we will not know if this chemo is helpful for about 2 years (if then). The oncologist at M.D. Anderson told me that the cancer has the best chance to reoccur in the first 2 years. So if it does not reoccur then I guess chemo was successful but if it does reoccur then it was not necessarily not successful since my cancer has such a high incidence of reoccurance. I think that I will be having scans every 3 months for the first 2 years after chemo but I am not sure. My oncologist has not told me that, but then she has not really discussed anything about what will happen after chemo with me.

And now that I heard the news about the sweet woman who gave me weaning advice, I've started to think about my own chances of death. I don't have anything philosophical or beautiful or even pathetic to say, about death, just that I've been thinking about it.

A Day Alone

My Mom is going home this morning and Captain Obvious does not come home till 11:30 tonight. I will have the whole day alone with Captain Adorable. Of course it will he fun to spend time with him (as it always is) but I know it will also be a little hard since this is my first day alone with him in a couple of weeks now and I still get tired, especially in the afternoon. I guess I can always drink a caffeinated beverage if I get tired (or eat some chocolate). Because I do not often have caffeine, it does affect me quite a bit, so I can rely on that for a pick me up.

I am trying to think of all the things we can do today. Perhaps I will even get ambitious and take the baby for a walk in the Ergo. Or maybe we will just hang out in the living room as usual. Right now he is playing with his baby gym. He has turned the whole thing upside down and is having a marvelous time exploring it from this different angle.

I hope we have enough pre-made stuff for lunch and dinner. It is hard to cook with him because he is so fascinated with what you are doing that you end up picking him up to show him what you are doing, which of course makes it difficult to continue doing it. :) I baked some tofu for dinner last night and he liked it, so maybe he will eat that for lunch today...or for dinner tonight, depending, I guess.

He slept well last night, though he did wake up and need to be sung back to sleep this morning at 6:00 (so of course I have been awake since 6:00 as I could not go back to sleep). I hope he is able to sleep well for his naps today. Even if I do not get to sleep during his naps, as I have said on this blog before, I love to have him sleep on me, and his nap gives me a little break from figuring out what to do next.

Starting to Feel Better

Today I only napped while the baby napped. I was not sick in any way today (except tiredness). We went to the post office (which took way way way longer than I thought because they only had one person there to wait on the entire post office) and dropped off the holiday cards. So, about 42 of you out there should receive a card with a beautiful photo of Captain Adorable very soon! I know, big surprise that Captain Obvious and I should choose to send a photo of our son...(smile) well, can you blame us?

I called an accupuncturist today; the same woman I went to about a year ago to help with making my body ready to give birth (and that seemed to go very well). She asked me what the prognosis was on the phone and it was weird to say "I don't know." I told her that I hope to live long enough to be a grandmother and she said she wanted to be part of that team. I just haven't thought about life expectancy for a while. I've been thinking about the chemotherapy experience so much I haven't picked up my head to look at the bigger picture for quite a while.

Hopefully I will live a long time. I feel hopeful. Why? I don't know. I don't have a lot of reason to be hopeful. I don't have a lot of reason not to be hopeful. I just have to wait and see if the cancer reoccurs in the next two years. If it doesn't, there is less chance that it will reoccur. But it probably will reoccur and it will probably kill me. I will probably die of cancer. Who knows how much more surgery and how many more IVs and pain and medical interventions are in my future? Ugh. My personal hell. Its not like I can even refuse and just let the disease take its course because I have Captain Adorable. I have to fight for every last second of life that I can give him.

And what about my hope to have another child? And to have a natural birth at home? Maybe I will get that wish... maybe I won't. Maybe I will get to nurse another baby (this time as long as we are both want). Maybe not. It is ok, Captain Adorable is enough, but I do want to be a mother again. I just don't want to leave a motherless boy and a wifeless husband.

More Throwing Up

I woke up at 5:30 or so this morning and tried to head off some vomiting by getting up and making myself some cream of wheat but I ended up throwing up at about 7:00 anyhow. I thought I was going to be fine but wow I really was not. I also had the runs again. I took the anti-nausea pills and slept all day...

Captain Obvious went to California (for work) so that left my Mom taking care of Captain Adorable all day by herself. I know she enjoys being with her grandson and she is here to help us out, but I feel bad putting so much on her all the time. Last round of chemo I was much stronger by this time and able to care more for myself and for my baby. This time I am just a big old lump of napping.

I'd really like to be strong enough to take my golly dern holiday cards to the post office. Would be nice to send them after doing all that work getting the pics, addresses, putting them all together, and signing them all. I guess many other people know exactly what I am talking about.

Sick From Chemo

I had chemotherapy again on Friday (Gemcitibine) and I've been feeling bad ever since. I guess that seems pretty normal, but I feel much worse than last time I had just this drug. I had my arm looked at but it did not hurt at the time, and although it does hurt a bit now and then, it is nothing like it was those first couple days.

I did not have a good day at all. I got really upset, despite having taken the anti-anxiety drug and I cried while waiting for the IV. So good to have my husband there to hug and console me. Then I threw up while getting the chemo, so that was horrible. Fortunately I was in the bathroom when it happened. Then I had to wait forever for lunch--my sweet MIL brought lunch from Whole Foods for us and there was some traffic, so we did not eat till 12:30 (which was late for me, especially since my stomach was empty from vomiting before). Fortunately when she did get there it was almost time for me to leave, so we could eat and run. Nice to be able to have the ride home with a full stomach.

Once home I felt good enough not to nap during the afternoon while my baby was napping, but in the evening I felt like crap and deeply regretted not having napped earlier. I snapped at my Mom a few times and generally was not in a good mood. Thank goodness she had the grace to put up with me without a complaint. Captain Obvious had to go to work after he brought me home from the hospital, and he did not get home till after 8:00, so I put Captain Adorable to bed. I was very happy that it went well and easily. I really think that the bath time/bed time routine is a good one and I am glad we made the transition from showers in the morning to bath time at night. Anyhow, he went to sleep in like 20 minutes or something after his bath, so I am confident that I will be able to put him to bed while Captain Obvious is in California (he leaves tomorrow and returns in 3 days, on Wednesday).

I slept on the futon to make sure I got a whole night's sleep, but as it turned out, it was good I slept there since I would have disturbed the sleep of the captains if I had been in the family bed. I woke up at 4:00am and despite taking an anti-nausea pill, threw up at about 4:30. I tried to recover and go back to sleep, and even tried to take another pill later, but I ended up throwing up again at 5:30. After that I went downstairs and extremely quietly prepared myself some breakfast (cream of wheat) so that I'd have something in my belly and hopefully not throw up again. I also had some rose hip and hibiscus tea. I stayed up till the rest of the family got up, at about 6:45 or so. Both my husband and my Mom claimed to have been awake the whole time too (not sure I believe this, but whatever).

Anyhow, after that I decided that since I felt like crap and still a but pukey, I would go back to bed with an anti-nausea suppository. That helped a lot (no more vomit) but also knocked me out for the day, essentially. I come downstairs for an hour or so at a time, but I always end up back in bed napping. I had a bloody nose when I blew it earlier this evening. I just feel so tired and sick.

Captain Adorable is walking on his own so much that we all agree that we can officially say he is walking now, so this is the big announcement on the blog! He is so deliciously cute when he takes those little steps from one place to another. I tried to get it on video this evening, but my guess is that it is not as good on video as it is in real life. :)

Nice Visit

My sweet MIL came to see us today and she brought a new toy for Captain Adorable (big plastic beads). He loved the toy and obliged her by showing off his walking and standing skills.

I slept a lot again today. I feel weak and tired. I like the fact that the half dose of steroids makes me more able to be around most days, but the other effect is that here we are, on Day 7 and I am still extra tired. Then again, maybe it is because this is my second round and it is more difficult for my body to recover this time...I do not know.

The vein in my left arm where I got the chemo last time hurts and has actually been swollen today. Hurting all day. Unpleasant and weird, huh?

Tomorrow is chemo day again. Not looking forward to it. Ugh.

Snow All Day

It was snowing when I woke up this morning. It is still snowing now. Mom and Captain Adorable and I took a little walk in the snow this afternoon and he loved it! Smiled the whole time! I hope the weather is ok tomorrow because my sweet MIL is supposed to come over and I don't want her to run into bad driving conditions.

The babe did not have a good night last night, poor thing (and poor Captain Obvious!). I got up to use the bathroom at about midnight and when I got back to bed, the babe was sitting up. I tried to put him back to sleep, but he got his hand in my shirt and started to cry and feel around. I think he was missing nursing back to sleep. Then we began a long running trade off between Captain Obvious and I, each trying to put the babe back to sleep, but he kept picking up his little head. Finally I left the bed and went to my futon in the sewing room. Captain Obvious said that the babe woke up several other times during the night...he did sleep until 7:00 this morning. I hope he sleeps better tonight so that they both get a good night's sleep.

We had a good dinner: Mom made this delicious butternut squash soup that everyone loved. Yum yum yum! How wonderful hot creamy soup is on a cold snowy evening.

Day Five and Still Tired

I am getting better, but still pretty tired. I did have a 3 hour nap this morning, but have not slept since then. I am ready to go to bed but I have to wait until the babe goes to bed if I want to sleep in the family bed.

I got to have Captain Adorable sleep on my in the chair this afternoon, so that was lovely. I really love to have close physical contact with my baby, even though we no longer nurse, it feels good to snuggle together.

Captain Obvious seems kind of pissed off lately and I don't really know why. He says he is very tired and I believe him. Unfortunately, I am very tired, too. Difficult to deal with his needs when I am so weak and vulnerable right now. I can really only deal with my own needs and most of the time I have to let my mother take care of my baby and me...I don't have much to take care of my husband, too.

Still Tired

Day Four (Day One is the day I get Cisplatin and Gemcitibine) is the worst one for me--last time and this time. I have had 2 three hour naps and I am still tired. I think I am going to have to go to bed before the baby tonight...

Last night I felt extra terrible. Filled with too much water and very uncomfortable--pain in my legs and uncomfortable ear and a belly full of burps. Couldn't get comfortable in bed with the captains, so I had to sleep in the sewing room. I got up about 800 times to pee. (I drank 80+ ounces of water yesterday!) Still, I am stopped up in the bowel movement department, just like last time, despite my taking stool softeners this time...I really hope I do not have to go through the same pain as I did last time...

Ugh. I feel bad.

Updated to add: seems that the stool softeners worked just fine and everything is moving along well. Thank goodness.

Sleeping Sleeping and More Sleeping

Well, the reduction in the steroids has made me more awake, but I am still sleeping a whole lot. I think I've had three naps today so far and I went to bed at 8:30 last night. I am also still a bit weak and not really interested in food. Captain Obvious is out right now getting some brie. (He just got back with brie and havarti.) I guess it is to tempt me to eat but for his own taste pleasure as well.

My Mom is wearing Captain Adorable in the Ergo on her back while she walking up and down reading Ender's Game (she'd never read it before). He's happy as a clam, but a bit of a loud clam since he keeps dropping the toys she hands him, so she's taking him downstairs so he can look at stuff he has not seen for a while. Now he's back to being a happy and quiet clam.

The night that Captain Obvious was away at his grandmother's funeral was the same night that of the day I got (the first administration of) my second round of chemo. It would not be good for me to sleep with the babe all drugged up and heavily sleeping like that, so of course my Mom slept with him, as we had planned. It went very well, for Captain Adorable at least, who did not wake up once during the night and slept till 6:30. She did not get much sleep because I guess he moves around a lot (I don't really notice anymore) and of course our bed is too soft for her...oh well, she still said it was an honor for her to sleep with him even though she wouldn't want to do it every night. However, without someone in the bed with him, I do not think he would sleep, so I am really thankful that she was willing to give it a shot and that it went so well. The next night I was back in bed and so was Captain Obvious, so back to normal. Captain Adorable slept with me for a nap today, too. When I woke up, he was lying next to me with his eyes open and a smile on his face. I love having my cuddle little one in bed with me!