Sunday, October 28, 2007

Easier Than I Anticipated

This morning Capt. Adorable went to sleep in my arms in the glider with only a little moaning and about 30 minutes of rocking/singing/stroking. He slept for about an hour and 20 minutes. His afternoon nap was in the stroller on a walk with Capt. Obvious. He did not cry to nurse today. However, when I got back from coffee with a friend at 6:00, it was clear that he was ready to nurse. I am still nursing him to sleep, so when it was bedtime, both of us were happy to have him fall asleep with a belly full of mama's milk.

Tomorrow we leave for Houston. The oncology appointment is on Oct. 30. I think I will get a similar plan of treatment: some chemotherapy followed by close (probably every 3 months) monitoring for several years. I hope I will get better or at least more precise information concerning my life expectancy and my future fertility. I would like to know what my chances of being alive 5 years from now. What about 10 years from now? Will I get to see Capt. Adorable graduate from high school? I would love to see him get married and maybe even have a grandchild...but that means I've got to live a lot longer than 5 more years! And, admittedly, the idea of living brings other joyful ideas to mind, like the idea of having more children. Understand that my darling Captain Adorable is a miracle and a blessing and it is mostly because I love him so dearly that I want to have more children. Of course if I cannot have more ch

Unfinished bc Capt. Adorable is awake and asking for his Mama. More updates when I am back from Houston!

Saturday, October 27, 2007

Tomorrow Will Be A Bit Better

I had a hard time thinking of a good title for this post because my emotions are so strong. I feel totally vulnerable. I feel almost like I've felt when I had a broken heart: blown apart. I have so much deep sorrow that can spill out so easily...I could wallow in that for a few pages. At the same time, today was not all terrible and tomorrow will be a bit better. I was lucky enough to once again to be together with Capt. Adorable today. I held, cuddled, fed, sang to, kissed, carried, and laughed with him. So not everything is dark. I mean: I have cancer and I have to wean my baby because if it, but I am alive and I love and I am loved. The sun still shines and flowers still smell sweet.

While lying in bed last night, waiting for sleep to come, I realized that yesterday afternoon was our last daytime nursing. I did not know it was the very last one at the time, though I did know it was one of a very few, so I did cherish it. It is good that I was not aware it was the last one because I probably would have cried and been sad instead of feeling happy and cuddly. It was a lovely nursing--we laid on the couch together and the babe nursed from one side for 11 minutes, then from the other for about 10 minutes. (I remember glancing at the clock when he was done, because it said 2:22.) He has been recently starting to do the gymnastics I so often read that other nurslings do on the motheringdotcommune boards. My perception of his efforts to move his whole body around while he nurses is that it is cute and a sign of his maturation and growing control over his body. But yeah, the day time nursings are over. Yesterday was the last one. I have really good memories of nursing him to last me a long time.

As far as napping goes, today was not bad. He took his morning nap (of an hour and 20 minutes!) in my arms in the glider. (Wonderful feeling to have my little love warm and soft against me.) The afternoon nap was another issue. Capt. Obvious took the babe upstairs with a bottle and tried his best to sing Capt. Adorable to sleep. Despite the effort, Capt. Adorable would not sleep or take the bottle. I don't know exactly what happened up there, but after 45 minutes the crying was pretty loud and punctuated with coughing, which means that he is crying so hard he can't swallow the surfeit of saliva and snot produced by crying. I went upstairs to suggest that a change of scenery was in order. While I respect my husband's efforts, I also respect my baby's need to be comforted, so I intervened. Not to say that Capt. Obvious was not comforting Capt. Adorable--I just think that sometimes parenting can be stressful and a supportive suggestion from one's partner can help both the parent and the child. Anyhow, Capt. Obvious did change tactics (and rooms) and tried for another 45 minutes to help the babe take the bottle and go to sleep. No dice. They came downstairs and together we gave the baby a little meal (seeing as he wouldn't take the bottle). Once his belly was full, Capt. Obvious took him for a walk. Sleep did come to the stroller, so the babe got a hour or so worth of good quality nap and Capt. Obvious got a quality walk.

Once they were back from the walk, Capt. Adorable played happily on the living room floor (supervised by his Daddy, of course). While we were waiting for the food to finish cooking, Capt. Obvious and I tried to get Capt. Adorable to drink. Yes, he did drink greedily, but it was fun because he laughed and laughed at the encouraging noises I was making, so I started laughing and soon we were all laughing. It was pretty great! In addition, I made lasagna for dinner and Capt. Obvious said it was the best one I had ever made. :)

Once dinner was done, we went upstairs to complete our normal bedtime routine. Nursing my baby to sleep was wonderful and I am incredibly happy that we can keep doing it for a little while.

Thank goodness for Capt. Obvious today. I am strong and I could have done it without him, but it is unspeakably better to cry on my husband's chest with his arms around me than to swallow my sorrow and be strong alone.

Tomorrow it will all be a little easier as this becomes our new normal.

Friday, October 26, 2007

Triumph...Almost.

This morning I was just so tired and my foot still hurt so much from the long walks this week that I tried to get Capt. Adorable to sleep in my arms again. I thought I'd just see what happened and if he cried I'd put him in the stroller. To my surprise and delight, he fell asleep in my arms after about 40 minutes of rocking and singing and stroking. He did not cry, really. Did moan some, but seemed mostly amenable to relaxation. And when he fell asleep...oh how wonderful I felt! Triumph! I was ready to settle in for an hour or so of sitting in the (nursing) chair with my sleeping baby on my lap.

Then the phone rang. Immediately after wards, my cell phone rang. Capt. Adorable stirred but did not wake for each of those episodes. I was nervous...then immediately after that, the house phone rang again and my Mom left a message. Again, I was thanking my lucky stars that the babe remained asleep. Then a few minutes later, the phone rang again. This time Capt. Adorable's eyes opened wide and he was definitely awake. The caller was someone from M.D. Anderson (in Texas) who was calling to confirm my appointment on the 30th. Sigh. I hated that guy so much.

Capt. Adorable only got 20 minutes of sleep. Still, it was good because he went to sleep in my arms and I learned the importance of TURNING THE RINGER DOWN!!!

For the afternoon nap I took him for a walk. It was pouring rain. My foot was so painful. I guess I am going to have to see a doctor about it (sigh). He was warm and dry in his cute little courderoy overalls and fleece jacket with the hood on his head and the rain cover on the stroller. I was not cold, but I was definitely not dry. By the time I got home I was soaked to the skin! He had a good nap, though--over an hour.

I was getting us all ready to go out again and run a couple of errands when I realized it was 2:00! Nursing time! We were both overjoyed to curl up together on the couch. I no longer nurse in the nursing chair because I want to be able to use that chair for cuddling and napping without the memories of nursing so immediate in Capt. Adorable's mind. Plus, side lying nursing is so sweet. After nursing, he played in his play area by himself for a while. Then we went to the health food store and he slept in the car on the way there, so he got in another 20 or so minutes.

The idea that after this weekend there will be no more nursing during the day is getting me down. Capt. Adorable did not eat a good dinner and was tired and eager to nurse to sleep. I dread cutting that nursing. Will he still love me when I no longer nurse him? Will we still have the same closeness when he is weaned? How will chemo's side-effects affect our relationship? If I am sick and distant and he can't nurse, won't there be distance between us? Will he feel abandoned by me? What will this do to his personality in the long run?

Thursday, October 25, 2007

Crying Today...Crying Tomorrow...

I walked from 9:07 this morning till 10:36. Capt. Adorable was asleep by 9:15, but he woke up well before I got home--he only napped for an hour.

He cried a lot today because he wanted to nurse. I cried a bit too, as always, and had to pull myself out of it, as always, because my baby needs me to help him more than I need to cry. I wish I could at least tell him how badly I want to nurse him, how sorry I am to have to wean him, and how dearly I love him. All I can do is hold him close, allow him to scratch me as much as he needs to, and sing him songs or whatever else he needs to distract him from his sadness. Of course the distractions don't always work and like I said, there was a lot of crying today.

I nursed him twice today--both short ones. Once in the waiting room of the midwives' office and once at home. He napped in the car both on the way to the midwife and on the way home, so I guess he got about an hour (or an hour plus a few minutes) total. I did not nap at all. I am tired--physically tired. Capt. Adorable has been rather demanding (maybe a better word is clingy) this week; probably because of the decrease in nursing. I can barely use the bathroom. I cannot leave him alone in his play area at all. He wants to be with me all the time. The mei tai is getting more and more use again. He does eat well...he's not hungry when he cries for nursing...he wants the comfort and closeness of it...(so do I).

There will be crying tomorrow. I hope I can find the strength to once again hold my crying baby close to me and deny him what he is so desperately asking for. I hope this weekend the transition to zero day time nursings can go easily because of help from Capt. Obvious.

F*ck this is hard.

Wednesday, October 24, 2007

Hunting the Elusive Nap

Getting Capt. Adorable to take a nap without nursing is elusive as always. That pacifier only worked that one time that I described in a previous post. Walking works sometimes (it did this morning) but other times not (yesterday morning it did not). I went for a drive with him on Monday morning to get him to nap and I drove over 50 miles! (Must have been like $5.00 worth of gas--can't do that every day!) The afternoon nap is still easy because I am still nurse him once per day...but that nursing gets cut at the end of this week, so things are about to become really difficult. I guess I could go for two 90 minute walks per day, but it would be difficult to get anything else done and it would also be rather demanding physically. I just don't know how to give my baby the comfort he needs to drift off to sleep without nursing him.

This afternoon he wanted to nurse again at about 5:30 or so. He climbed into my arms, moaning, and rubbed his face up against my d├ęcolletage. He touched me with his little fingers, dragged his sharp little nails across my skin and moaned/cried. If I did not already know what he wanted, I could not possibly have ignored/misunderstood these very clear requests. I cried. But I had to stop, and quickly, because I knew I needed to help my son to deal with the sorrow of not nursing and allowing myself to cry was not going to help him.

Last night Capt. Adorable did something for the first time ever. :) Here's the story. Because that one success with the pacifier has made me hope that a pacifier can help us in the future, I've been trying to introduce it in non-stressful situations. I even have it around when nursing is available. Sometimes we play this game which starts out with me putting it my mouth. Capt. Adorable thinks that is funny and pulls it out and sticks it in his mouth (not necessarily the nipple part...). Then I get it again and stick it in my mouth, and he pulls it back out, et cetera. Last night I was putting the babe to bed (which means he could nurse) but he was crawling around the bed still awake, like he does almost every night. I offered him the pacifier. With a big smile on his face, he started wapping me in the cheek with it, which confused me until I realized he wanted to play our game. So, I put it in my mouth and sure enough, he pulled it out. How cool! We were playing our game and the baby initiated it! Plus, it was the first time he offered me something. :)

Tomorrow I am going to the midwife for my 6-month post-partum check up (too bad that my baby's 9 and a half months but I've been a little busy since May with bar and lung tumor and all). The travel to and from and the appointment time itself encompass Capt. Adorable's one nursing. I don't really know what to do about that...I guess I will just break the rules and nurse him a bit before, some during, and some after...nice for me and nice for the babe, but maybe bad for weaning??? Oh golly golly golly I wish I did not have to wean my little love.

I tried to post a couple of pics on Sunday night but stupid google had a systems error. I will try again later this week.

We're going to M.D. Anderson for a second opinion next week.

Sunday, October 21, 2007

I Am Lucky

I am lucky. My family is lucky.

Our baby is in excellent health. (I cannot begin to imagine the pain of parents with sick babies. Thank goodness I am sick and not my son.)

I am healing really well from the lung surgery. We have good health insurance. We have a good place to live (even though the neighbors suck). I get to wake up every morning with my two favorite people in the world.

Saturday, October 20, 2007

Good News, Ongoing Bad News, and Our Trip

Good News

The results from the PET CT scan are back and the results are good for the most part. There are 2 nodules which showed up on the CT scan. One is in my right upper lung and one is in the left upper lung. Both are very small (smaller than 8mm, the smallest thing the PET will show) and both could be cancer but could be scars or other things (don't know what). I asked the oncologist if she thought they were cancer or question marks and she said question marks. They are too small to biopsy. I asked the doctor (on my father-in-law's advice) to please check the CT scan taken in June for the nodules. The left one does show up in the June CT and the right one does not. This does not mean much--certainly does not change treatment recommendations. So, this is good news. No big lesions anywhere and even these nodules look benign...then again, all the doctors told me the lung tumor was benign too and that really did not turn out like they thought...

Ongoing Bad News

When I asked about my life expectancy and such, the oncologist said that while chemotherapy can help me, this cancer will likely be back (adenocarcinoma is know for reoccurance). She said that she knows people who are alive 5 years after treatment, but those people tend to be the young ones. She said she didn't think I'd die in a year, but she has nothing to say about whether I will make it past 5 years.

Thinking about dying makes me sad--not because I am afraid (I am not) but because I do not want to leave my baby. I would definitely want my beloved husband to marry again and go on with his life, but I do not want my son to be a step-child. I know what it is like to be a step-child and because I want the best for my child, I do not want that for him. (Weak attempt at humor: plus he'd be a red-headed step-child. Ha ha.)

The oncologist says I should start chemotherapy 6-8 weeks after surgery for the best chance at survival and I should not delay past 3 months. That would mean starting chemo in the first or second week of November. Which means I have to wean by then. And now the crying begins.

On Friday I spent 2 hours trying to get Capt. Adorable to take a nap with my singing and stroking and rocking method. I offered pacifiers (2 kinds) I walked him inside and out back on the deck. I sat and sang. I took him for a 45 minute walk (keep in mind it has been only 6 weeks since I had 2 lobes of my right lung removed--a 45 minute walk with my big, heavy baby in a mei tai is a bigger deal for me than most.) No dice. He cried. And cried. And cried. This from my baby who doesn't really cry. My sweet, happy darling who is confident that his mama will be there to meet his needs...this precious baby I have to betray by withholding. I have to not give him what he needs, what he asks for, what he should have. After shedding a few tears myself, I gave in at 11:07 and gave him the breast. Immediately there was peace. Capt. Adorable closed his eyes, relaxed his body (which he had been throwing backwards as hard as possible), and went to sleep.

I know whoever reading this blog has got to be tired of me saying this by now but I DO NOT WANT TO WEAN MY BABY! It hurts me to do so. My heart aches: for him and for me.

Our Trip

Our visit to Luray Caverns was pretty cool. Of course Capt. Obvious wore Capt. Adorable in the canverns, and that worked out nicely as usual. We took a bunch of pics. Perhaps I will even get around to posting one here. The hotel we stayed in that night was better than either Capt. Obvious or I expected, but the stupid alarm clock went off at 6:15! Neither parent could not get Capt. Adorable back to sleep and if the baby don't sleep, no body sleeps, so we were up as a family. Eventually we all got showered and dressed and headed down to breakfast, which was not bad. I made sure to clean up the floor and wipe the table down before we left so that the next people to sit at the table we used wouldn't slip on a bit of grape or dirty their shirt sleeves with yogurt residue on the table top. I looked up to see a (probably very nice) woman talking to Capt. Adorable and Touching His Nose!!! I gave her an eat sh*t and die look and she took off pretty quickly. I just don't understand why on earth people think it is ok to touch a baby without permission. Especially his NOSE--I mean why not just stick your effing fingers in his mouth, you germ covered freak??? I don't know where you've been! You trying to make my baby sick? OK, rant over. :)

Monticello was pretty cool. I think Mount Vernon might be a little nicer, just from a tourist's perspective. I was surprised the house was made of brick. We took a bunch of pics at Monticello and even some video. The ride back was not bad from the perspective that Capt. Adorable slept most of the way. It was really bad from the perspective that Capt. Obvious and I started talking a little about what to do with this latest news about the cancer and both ended up in tears for quite a while. He was driving and crying and I was in the back seat with the babe crying (silently, so the babe could sleep). Ah well, at least it kept us awake for the drive.

Thursday, October 18, 2007

Ahhhhh What a Relief


Here's an image from the MRI. It is such an alien, ghostly image and yet it does look like me...if you know me well enough, I suppose.

My husband set the alarm for 3 am (at my request) so I could get up to pump last night. I was unhappy about waking up when it went off, but I dutifully pumped. My breast still felt clogged, despite my putting the hot pad on it (maybe I made it too hot!) and taking a hot shower and massaging in the shower. I really needed to nurse. A baby is far better at emptying milk ducts than a pump.

At 8 am I woke up to the sight of my baby crawling into the room where I was sleeping (sort of my sewing room). Of course, my husband was right behind him. I was pleased to see that it was 8, which meant that it was 23 hours since the radioactive glucose was administered, so almost 12 half-lives had elapsed, making it ok to finally hold my son!!! (The doctor and the tech told me yesterday that the half-life was 110 minutes, but both rounded up to 120 minutes for ease of conversion/understanding.) I was instructed that 10 half-lives, or 20 hours, was ok but 24 hours was better.

I happily held and kissed my beautiful boy. Once he was ready to come out of the shower (my husband takes a shower with him every morning and has done so for almost all of our son's life) I was eager to wrap him in a towel, take him in my arms, and put him on the changing table to be dried with a hair drier (on low and warm, not high and hot!) and then oiled with sweet almond oil before diapering and dressing. Oh what wonderful fun to take care of/play with my growing boy! He insists on standing up on the changing table now. Frankly, this does make it easier to dry him, but more difficult to oil him! Also, quite difficult to diaper him!! But whatever--I had a great time.

I nursed him starting at 9:30, over 12 half-lives after the PET shot but only 47 (instead of 48) hours after the MRI shot...hope I don't go to hell for it...I drank at least 4.5 liters of water yesterday to help the my body get rid of all that stuff...

In fact, I broke nearly all my weaning rules today. I really needed to get the clogged duct cleared out and thankfully nursing is the best way to do that. My breast is back to normal. Good gracious how nice it is to take my baby into my arms. How wonderful it is to calm him with the comfort he is used to--the comfort of nursing. (It is the comfort I am used to as well.)

What a relief.

Anyhow, it was a wonderful day of hanging out, reading books, crawling after him as he climbed the stairs, supervising him as he chased the cat (Piggy), and all those other little things we do together. I enjoyed the whole day with him, especially nursing him to sleep this evening. Golly dern how I am going to miss that.

Tomorrow my husband (whom I am going to call Captain Obvious from now on) , the baby (whom I am going to call Captain Adorable), and I are going on a little trip. We're going to hit Luray Caverns tomorrow afternoon and Monticello on Saturday. Then we're coming home.

Tomorrow is also the day the oncologist is supposed to call and tell me about the PET CT scan report...if she has good news, the trip will be a celebration. If she has bad news, it will be a distraction.

Wednesday, October 17, 2007

PET CT scan and MRI Results!

This morning I went in for the PET CT scan. I went to bed very late (after midnight--so hard for me to sleep without my husband and my baby, as I mentioned below). I figured that I would wake up when my breasts were full and I would pump when I woke up, thinking that would happen at like 3:00 or something. Nope I didn't wake up till 5:00 am and had one aching breast and one sore one. I pumped and dumped (boohoo to see all the lovely milk go down the drain but I knew it contained the bad dye) and then couldn't get back to sleep. Of course when the alarm went off at 6:30 I was asleep...

Anyhow, the PET CT was different than I expected. My sweet mother-in-law met me there, and having her to keep me company was wonderful. It makes me feel so thankful that she takes so much time out of her schedule just to be there to hold my hand for a tedious event like this. There was a kind tech there as well, and his chill attitude really helped me to relax. The radiologist came in to talk to me about the test and what I had to do to make sure it was a good test. Mainly I had to be as calm and relaxed as possible-even my thoughts had to be calm or my brain would suck up all the radioactive glucose. (hehe) I would not be able to read or talk or even listen to someone else talk. The doctor was very nice (they always mention it when they see on my chart that I've taken the bar...hmmmm...funny that they even note that on the chart...) and he answered all my questions. He also explained that I would have to be very very still when they put me inside the machine so that the pictures would be the best possible quality.
Then the tech came back and put in the IV. He put it in my arm, near the elbow joint, not in the hand and that was much nicer than the hand. I've really got to get over my hatred of IVs if I am going to do chemo! Once the IV was in, he tested my blood sugar (normal). I had to drink a glass of some white, thick liquid (I will look up what it was and add that later) and a glass of water. He left so I could pump, but not before telling me and my MIL (mother-in-law) that his wife nursed their child till 2! I felt even more friendly towards him. During the pumping I noticed my left breast was still feeling full and heavy but was not putting out much.

Then the injection of the radioactive glucose went in through the IV and the light got turned down and I closed my eyes and relaxed. It turned out that my sleepless night worked in my favor, for I found it easy to relax, alone there in the (sort of) comfy chair in a darkened room. They have a camera in the room, so they can watch you while you are supposed to be resting--I guess so if you decide to do some jumping jacks they can come stop you? The tech came back after about 15 minutes and gave me some more white liquid and water to drink.

Another 15 minutes after that, it was scan time. I was cautioned not to talk from the time of the injection, so I was silent. We went in to the CT scanner room, where I was disappointed to note that the CT machine was much bigger than the one I saw yesterday. This one was indeed big enough for my whole body to fit inside. But because I had already conquered the fear of the tube yesterday, it was fine. I did have to lie with my arms stretched above my head, but the tech wisely took out my IV to make it more comfortable for me. He was so thoughtful that when he covered my body with a sheet, he tucked it beneath my bare feet to keep them warm!

I was again able to use my exhaustion to keep my body still. I think I might have even dosed off towards the end.

When I got home I realized that I have at least 2 if not more clogged ducts and can't nurse for many more hours (not till 10:30 tomorrow morning). I did put a moist heat on the breast, but no movement in the clog to far...I sure hope I don't end up with mastitis. If only I could nurse that would help move this clog along.

My oncologist said she would give me the results of these scans on the 18th but when I emailed her this afternoon it turns out she will be out of the office on Thursday. However, she said she'd call me on Friday morning. Then she emailed with the results of the MRI--GOOD NEWS! No brain cancer!!!

My husband and I are drinking champagne. (I can't nurse anyway, so why not live it up and get a bit tipsy???)

Tuesday, October 16, 2007

MRI and Its Effects, plus some Motherhood Stuff

Had the MRI of my brain today. Whew that machine is scary and I only had to go in about half way. It is really frightening to go into that slim white tube! Fortunately, the tech who was in charge of getting me in there was very nice. He was patient with my fear. I was able to gert past the panting and sweaty palms because I realized that if I had to, I could wiggle out of the tube pretty quickly, and that made me feel better and relaxed and I was able to be inside it with no worries.

So, the bad news is that the dye injection they gave me for the MRI is incompatible with breast feeding. For 48 hours after the injection (at approximately 10:30 this morning) I cannot nurse my son at all. I have to pump and dump. And of course my poor sweet darling has to deal with not being able to have his middle of the day nursing. Both of us cried today; him more than me, but it was not a great day for either of us. Of course, this is following the schedule I planned out for 4 weeks to a weaned baby, but damn it is hard.

I actually did get him to sleep today without a walk. I sat in my nursing chair (a wonderful glider with a gliding ottoman) with the baby and rocked and sang and stroked his back softly and gently. He seemed to get into the tired baby trance, but was desperately searching for something to suck on all over my chest. He was biting/sucking on the edge of the vee-neck of my shirt. I decided to dig out one of those pacifiers he rejected when he was a couple of weeks old (good thing I sterilized them and put them in a bag before tossing them in the cupboard). He was very interested in the one I gave him, and stuck various parts of it in his mouth as I continued to rock and sing. Eventually he got the nipple part in there and fell asleep almost immediately. I was sooooo thankful. I shed a few tears at the realization that our situation has come to this--using a pacifier (which we were so pleased that our son rejected) to replace the natural solution. Or maybe I wasn't crying about the pacifier but about the fact that I have to wean my beautiful baby boy because of cancer.

Anyway, he did have a good dinner. He had yogurt, broccoli, a few whole wheat crackers, and some chicken that my husband grilled. He drank several ounces of diluted papaya juice.

He just went to bed in about half an hour for my husband. He drank about 3 or 3.5 ounces of expressed breast milk to get to sleep. I pumped and stored a hundred ounces to prepare for my lung surgery and because the babe drank mostly the milk I pumped while I was in the hospital, my stash of frozen EBM (Expressed Breast Milk) got to up over a hundred ounces. Awfully glad I have it now, of course.

I cannot sleep with my family tonight (as I usually do) because the baby will want to nurse during the night and that will be very very hard to say "no" to--especially because he will ask to nurse about 3 times during the night. So, I will be in the sewing room on the futon.

PET CT scan tomorrow morning. No nursing for 24 hours after the radioactive glucose! But, worse, no holding the babe (or even being in a small room--or a car) with the babe for those 24 hours...wish me luck! It is going to be hard for me.

One bit of good news: the CT scanner is not half as scary as the MRI scanner. You still have to go inside a machine, but the CT machine is more like a donut and is slightly bigger inside than the MRI machine. The MRI is deep enough that my entire body--head to toe--would fit inside. The CT machine is only about 2 feet deep (or thereabouts). Not claustrophobic at all! My husband is staying home from work tomorrow to care for the baby since I will not be able to do so at all, and my sweet mother-in-law is meeting me at the hospital and will stay with me during the entire test.

Motherhood (Not Cancer) Stuff:
AP stands for Attachment Parenting. Never heard of this parenting philosophy? WHAT ATTACHMENT PARENTING IS �THE 7 BABY B'S
Baby Wearing is putting the baby in some sort of carrier, like a sling or a mei tai that keeps the baby close to your body. Check out The Baby Wearer for more information. (I found a pattern online and sewed my own mei tais but there are several web sites that sell beautiful ones.)
Co-sleeping means sleeping with the baby in your bed. We've co-slept with our son since he was a about a week old. This has made night-time breast feeding much easier for mama and baby and there is nothing so wonderful as waking up to a smiling baby at your side! See Dr. Sears' article called CO-SLEEPING: YES, NO, SOMETIMES? for more information.

Monday, October 15, 2007

The Story of My Cancer Diagnosis

Here's the story of my cancer diagnosis, for any who might be curious.

- I used to smoke, socially. I smoked for about 10-12 years, but maybe a half a pack a day at MOST.
- I got pregnant in April of 2006 and I gave birth to a beautiful boy in January 2007.
- I was sick (fever with no other symptoms) in April 2007 but did not think much of it.
- In May I thought I had mastitis (a breast infection often associated with breast feeding) and I treated it with antibiotics. I did not get better. In fact, I got sicker and sicker and eventually ended up going to the emergency room because I had a high fever (102.5) that would not go away. (This was all at the beginning of bar classes, too, so it was rather stressful!). I was diagnosed with pneumonia.
- 2 weeks later I had a follow-up chest x-ray and it showed no change despite my symptoms being gone.
- 2 weeks after that I had another chest x-ray and again, no change. My doctor sent me for a CT scan. The CT scan showed a lung tumor.
- Then I went to a pulmonologist, who said it was most likely a benign tumor I'd had since birth and that it was blocking an airway and that had caused my pneumonia. He sent me to a surgeon. Breathing tests showed "almost normal" lung capacity (about 80%).
- The surgeon (head of thoracic surgery at Johns Hopkins) said it definitely had to come out--and that the lower lobe of my right lung would have to go.
- I sat for the Bar Exam in late July. It really helped me get my mind off the tumor and the upcoming surgery. Results come out in November and IF I passed, I don't get sworn in till December.
- I had surgery on Sept. 6. The tumor in my lower lobe was bigger than expected and there was another small tumor in the middle lobe. Both the lower and the middle lobes of my lung were removed.
- I was in the ICU for th dau and night following surgery. The next day I was transferred to a regular floor. My total hospital stay was about 5 days and then I (thankfully) got to go home. Healing is going well. There is pain and I do not take any pain medication because the medication I was given precludes breastfeeding! (Doctors can be such idiots sometimes.)
- The pathologist's report came back about a week later and it showed that the tumor was cancer. The report indicated that the source of the cancer is likely lung but cannot rule out other areas of the body.
- The lymph nodes and the pleura (chest wall lining) were cancer free, so that's really good.
- I am met with an oncologist for the first time on Sept 25. The doctor told me that she recommends 4 months worth of chemo to start in early November (the delay is to give me time to heal from surgery).
-
I am going to have an MRI brain scan tomorrow (Oct 16) PET CT scan the day after that (Oct 17). The oncologist told me thst I could call on Oct 18 to get the results.
- Based on whatever those results are, her recommendations could change.
- We are planning to seek a second opinion in Houston before starting chemo.

Sunday, October 14, 2007

Still Angry

I read in another blog (written by a guy who died of cancer while he was still alive and going through chemo) that most cancer patients experience anger.

I am still angry.

I love my baby so much I can feel the vibrations of it in my bones. I love his beauty, his intelligence, his awakening to the world. I love being with him, watching him, nurturing him. I love looking at photos of him when he was a "little baby." (He's 9 months old now.) I love the way he is learning to control his little body and the way he moves is just amazing. Yesterday we were on a train (at the B&O Train Museum in Baltimore, MD) and he was sleepy. I had been holding him and singing quietly to him for a while. When we sat down on the train, he relaxed his body onto mine (so we were belly-to-belly, chest-to-chest) and then rested his little head on my shoulder. He was awake, but just resting on me, in my arms, with such ease...it felt so good.

Because of a problem with reoccuring ovarian cysts (and stupid doctors when I was a teenager) I lost an ovary when I was 16. Ever since then I was afraid I would not be able to have a baby when I was ready. My husband was not ready when I was, so I waited a bit longer than I would have liked. It took us a full year to conceive. My pregnancy was a good one and I was so so happy--full of the joy that a longed-for pregnancy can bring. My husband and I planned a homebirth but I developed pre-eclampsia and had to be induced at a hospital. It was still a good birth (yes, I did it with the love and support of my darling husband and a good doula--no analgesics necessary), though I will always resent the time that the hospital robbed me of with my baby when they took him to the nursery for several hours to "clean" him. How I wish I had those hours back! Why oh why did they have to take him from me, anyway???

I want so much to see this darling boy grow up. I want to help him learn to read. I want to be there when my husband teaches him to ride a bicycle. I want to be a mother to him for decades. Now I fear that cancer will take that pleasure from me.

I also want to have another child...well, ok, I want to have 2 more children. And now the door is closing on that dream as well since it seems that chemo will likely leave me sterile.

Oh god it makes me so sad to think of stopping nursing. Not only does it make me sad because it is a big part of my relationship with my baby now, but it seems that I will never get to nurse another baby. So I mourn for now and for what might have been.

I just finished reading _The Black Prince_ by Iris Murdoch. Here's a quote I felt applies to how I feel about this waiting waiting waiting for more information and answers:

Waiting in fear is surely one of the most awful of human tribulations. The wife at the pit head. The prisoner awaiting interrogation. The shipwrecked man on the raft in the empty sea. The sheer extension of time is felt then as physical anguish. The minutes, each of which might bring relief, or at least certainty, pass fruitlessly and manufacture an increase of horror.

Friday, October 12, 2007

How I Feel

Since being diagnosed with cancer:

I've been angry.

I've been sad.

I've felt robbed.

I guess I still feel those emotions. But maybe I think it is also I'm beginning to see something like this: I always thought I was on the 100 year plan (or maybe the 120 year plan!) and now cancer has made me see that most likely I am working on maybe the 40 or 50 year plan. But the big thing I missed is that those 50 or 60 years that seem stolen were never guaranteed to begin with. Each day is a gift, not just a means to next year.

My baby is beautiful and sweet and amazing. Every moment I get to spend with him is a lifetime of joy.

Thursday, October 11, 2007

Napping Without Nursing

My parents left (boohoo). It was wonderful to have my mom here for the last two weeks--she was such an incredible help!

This morning I put my baby to sleep for a nap without nursing for the first time ever. My mom has been walking him in the stroller (for up to 2 and a half hours at a stretch!) in order to let him get in a good solid morning nap, but this morning she was already on her way home and I needed to get him to sleep. I put him in the Mei Tai (a baby carrier) and started off. The weather is gorgeous--really feels like fall outside, so I had the baby in a jacket, jeans, and socks. Sure enough, soon the movement of my body as I walk put my son to sleep and I felt him gently relax into my chest. I walked around a bit longer so that I could make sure he was really asleep (I didn't want him to wake up as soon as we got home). Thank goodness, it worked. He's still sleeping as I write this.

Wednesday, October 10, 2007

Went To The Dentist

Went to the dentist yesterday to have my teeth cleaned. The oncologist told me to do so because we want to avoid all possible sources of infection. Chemo compromises your immune system, so fighting an infection while having chemo is not a good idea. At first the dentist said I had a cavity! But it turned out not to be a cavity, just a deep groove in my tooth, so that was a relief. My wisdom teeth are all impacted, so the dentist said I should just leave them alone unless they bother me. The surgery to get them out at this point would be pretty intense--involving cutting bone and all that, so I think I am going to follow his advice and leave them alone.

The oncologist also told me to get a flu shot...I don't really want to do that one...we will see.

My husband wants me to do chemotherapy and I guess I am taking preparatory actions.

I'm going to Mount Vernon (George Washington's home) with my parents and my son. Should be fun...

Tuesday, October 9, 2007

Quality of Life

I love many things about being a mother, and one of the aspects of my relationship with my baby that I cherish most is breast feeding. When I was pregnant I feared breast feeding more than giving birth--I'd heard waaaay too many horror stories. So when my experience was easy and natural and wonderful, I was surprised and pleased. I love nursing my baby.

Now I am weaning to prepare for chemotherapy. You can't nurse on chemo--the drugs get into the breast milk and the baby cannot have that poisonous stuff. I hate weaning. It makes me so sad.

The thing that makes me saddest is that we do not even know if I have more cancer or not. The two lower lobes of my right lung were removed on September 6, 2007. The linings were clear and all the tumors were removed. Now I have to wait to heal enough from surgery to have some more tests (a PET CT scan and an MRI brain scan) which will tell us if there is more cancer that can be seen in my body. Of course, even if there are no visible tumors, the oncologist wants to do chemotherapy.

And that's where my problem starts. I don't want to do chemo. Stage IV lung adenocarcinoma has about a 2% survival rate for 5 years. OK, that statistic includes all comers and I am much younger and healthier than the majority of lung cancer patients, but my youth and health get me like, what up to an 8% chance? A 10%? No one knows--or at least, no one is telling me. And even if I do survive 5 years, my cancer has a high chance of reoccurance. And on top of that, one of the side effects of chemo is that it causes...you guessed it: CANCER.

So, if I'm going to die of cancer (and that's what it looks like), and I'm probably going to die soon of cancer (like within 10 years), then what is the point of doing 4 months of chemo? It will be torture for me (I HATE HATE HATE IVs) and really does not give me much better a chance of survival. Yes, chemo supposedly adds 15% chance of surviving 5 years. So what am I up to now? 20%? 25%? Is it really worth it?

What about my quality of life?

Let's say I do survive...will I have permanent tinnitus (ringing in the ears that makes you hard of hearing) or my hair be ruined or will I go into menopause because my reproductive system has been destroyed by chemo? Maybe I will only have nerve damage in my hands and feet.

Is death really that bad? Is it really worse than living crippled? Wouldn't it be better, more peaceful, to die now instead of going through all this fighting and effort and die anyway?

Wouldn't it be better to enjoy life now? To heal from my surgery, nurse my baby, hang out with my husband, and enjoy each day rather than subject myself to the pain, worry and constant waiting. I'd rather enjoy myself. I don't want to do chemo.

Monday, October 8, 2007

The more I read about chemotherapy the more nervous I become. The side effects are no joke. Of course it is possible that I will not have all of the side effects, or that I may have only a mild version of the side effects I do get, but it still makes me a little scared and sad.

In other news, today is the first day of the second week of weaning my darling son from nursing. I am now going to have to cut out the mid-afternoon nursing. (Last week I cut the mid-morning one.) So far the baby is taking it a lot better than I am. He seems to be enjoying the things we offer him to eat and drink.