Some updates

Again, I have been remiss and neglectful! I have a draft of the birth story and some other updates in the works but haven’t gotten back to the “big project” of that yet…so tonight I am going to enter a few snippets and just post what I have when bedtime hits (read: Stephen wakes up for the bedtime feeding). So if this post ends abruptly or seems incomplete, it is. More will follow, eventually.

I had chemo treatment #7 today, putting me officially over halfway! The last one is scheduled for March 1…and it’s coming. Soon and very soon.

I got Bendaryl again with the bleomycin now added in…Benadryl is crazy stuff! I’d have to think long and hard about using it for general purposes. It knocks me out for a good part of the day.

I am getting a port put in the first week of January, and my PICC line removed (I like to say “yanked”, it sounds so official and medical-y!) the week before that. Maybe. We’ll see. In my ideal world, they use the PICC line for that week’s blood work and then the anesthesia for the port placement (more sedation! I love that stuff!) and then they remove the PICC while I am still out and I wake up none the wiser as to how that actually feels. I’d already rather not know how it feels going in, but that horse has left the barn. In the real world, anesthesiologists maybe don’t like PICC lines for their craft, and something something something else about the blood work (this was all being discussed AFTER the Bendaryl was on board) and the upshot is I probably have to get an old-fashioned blood draw for my labs and then an IV for the anesthesia. Wah!

I am such a baby. I have had those before. I have given birth med-free (second time). I have gotten epidurals placed (#1 & #3) and an IV is much nicer than epidural. I have just gotten really spoiled by my PICC. But the risk of infection and the chances it might stop working before all of this is over are decently high, and the port can stay in for quite a while so I can get my bound-to-be-extensive blood work done there for follow-ups down the road, too.

I had a PET scan on Tuesday, my first since all of this now that I am not pregnant. Drinking the barium stuff was the worst part of it, ugh. THEY could do the injection into my port! results came back and showed that: A) I definitely do NOT have involvement below the diaphragm, which means I am still Stage 2, which is the expected result but still good that nothing escalated; 2) the neck and axillary lymph nodes are measuring 1.7 cm and…something else…for the largest ones, which is a reduction by approximately half, at the halfway point for chemo, so that is good too; and D) the mass by my heart is definitely a lymph node (this was unclear before with limited imaging) which means it is not IN my heart, just next to it, and the node is measuring about 5 cm, down from the approximately 12 cm that MRI put it at in September. This is all good progress.

I will get another PET four weeks after my last chemo in March. The results of that will determine whether or not I need radiation. Obviously I would rather not, and I am asking for prayer that the chemo will do the job completely and permanently. I will do what I have to do, of course…as with all of this…but I’d just rather not do too much more.

My hemoglobin is up to 11 for the first time since this all started, yay! It might still go back down, but for now we have good progress. Been in the 9-10 range previously.

My nurse today is 35 weeks pregnant with her first and did not find out boy/girl. Ah, memories. 🙂 We met a very nice man who is a pastor and volunteers at the infusion center…now that his wife is done with her treatments. It was good to talk to him, and he specifically acknowledged how hard all of this is for Chris, too. A lot of people get that, but sometimes it gets lost in the shuffle.

Stephen comes with us to all of this–he mostly sleeps still so is very easy to cart around–and he is a little celebrity. 🙂 The nurses today were sad that he was sleeping when we arrived and asked if he would wake up so they could see him. We told them (accurately, once again) that he would wake up as soon as Chris brought back our Mexican food for lunch. On the dot!

Stephen is, far and away, our best sleeper. Bless him. Is it him? Is it the formula? Don’t know, not particularly concerned with why! Just enjoying NOT feeling sleep-deprived most mornings.

He had a follow-up with the pediatric urology surgeon last week (and weighed 8 lb. 1 oz.!) and seems to be doing well. They will continue to look for his still-undetected gallbladder every two months until he is six months old, at which point they give up on it but also he is pretty well out of danger from anything developing in a wonky way and causing toxicity. Is my general understanding. More of the saga is included in that draft post I mentioned, which I will post fairly soon, but sufficient to say that he seems perfectly healthy, gallbladder or no, and will join me in the ranks of “met the medical deductible for 2013”. Glad we signed up for the FSA.

He is really cute. Well, you all saw the pics. I will post more at some point. Really cute. Really mellow! And snuggly.

We have been blessed with many, many meals this fall, including a near-solid every-other-day run after Stephen was born and through the next two chemo treatments. We are so grateful, and pray for blessings for the families of all who have served in this way. It helps more than is often realized.

I have also, post-pregnancy, been blessed with decently-renewed energy in the week between recovery and the next treatment (aka “good week”) and have been able to actually cook dinner for my family a few times! Anyone who is on Facebook with me knows I mostly post about food and my kids, I like food. I like to eat it, but I like to plan, shop for, and prepare it, too. Dishes, meh. 😉 So this is a happily normal thing for me.

My family is coming out for Christmas, yay! So, so, so, so looking forward to the coming week, even with chemo recovery mixed in. That’s almost normal, but the family visit is cause for celebration!

Bedtime!

Advertisements
Posted in Uncategorized | Leave a comment

Fun family photos (mostly baby)

Luke beginning his construction puzzle

Luke beginning his construction puzzle

Luke finishing his construction puzzle "all by myself"

Luke finishing his construction puzzle “all by myself”

My first moments with Stephen

My first moments with Stephen

Officially our little peanut

Officially our little peanut

Daddy gets his first snuggle

Daddy gets his first snuggle

Luke meeting Stephen

Luke meeting Stephen

"Petting" the baby

“Petting” the baby

Sweet, sweet moment

Sweet, sweet moment

Luke and Grandma with Stephen

Luke and Grandma with Stephen

One moment out of the entire ten minutes he had his eyes open in the first two days

One moment out of the entire ten minutes he had his eyes open in the first two days

Just a little baby pose

Just a little baby pose

He wasn't thrilled with the outfit change

He wasn’t thrilled with the outfit change

Doing better with a hat

Doing better with a hat

Whew! Daddy brought socks! And Daddy-warmth.

Whew! Daddy brought socks! And Daddy-warmth.

Joseph's first time holding Stephen

Joseph’s first time holding Stephen

Love, love, love this!

Love, love, love this!

High times at the Thanksgiving table

High times at the Thanksgiving table

Naptime! Best place in the house.

Naptime! Best place in the house.

All FOUR of my boys on one chair!

All FOUR of my boys on one chair!

More brotherly snuggles.

More brotherly snuggles.

Just Mama messing around with baby poses

Just Mama messing around with baby poses

Boys and their respective pizza styles

Boys and their respective pizza styles

Stephen and Nana meet

Stephen and Nana meet

Sweet sleepy baby

Sweet sleepy baby

Another view

Another view

I am NOT ready for this sitting up thing!

I am NOT ready for this sitting up thing!

What his hair does after a wash...soft and fuzzy!

What his hair does after a wash…soft and fuzzy!

Oh, the face of a getting-burped baby!

Oh, the face of a getting-burped baby!

He was super-snuggly and I couldn't resist getting a pic with my sweet baby.

He was super-snuggly and I couldn’t resist getting a pic with my sweet baby.

Stephen and Joseph's Kitty Cat (her proper name)...he is winning the growth contest.

Stephen and Joseph’s Kitty Cat (her proper name)…he is winning the growth contest.

Posted in Uncategorized | 4 Comments

Our new baby!

 

Introducing Stephen Timothy, born today (11/19/12) at 4:41 p.m. 6 lbs. 15.5 oz. and 19.5 inches long. We are both doing well. More later!

Posted in Uncategorized | 2 Comments

This is it!

Tomorrow is baby day. And tomorrow begins at midnight, which is when I am supposed to show up at the hospital to start the induction. Apparently low-dose pitocin overnight will get things going a little but still allow me to sleep…riiiiight. I’ll have to get back to you on that.

I had very different experiences with the boys: one an induction at two weeks late, pushing urge too early, epidural, long night, 2.5 hours of pushing, infection, baby with nuchal cord and 48 hours in special care; the other, mild contractions starting in the morning two days after the due date, getting interesting around lunchtime, getting to the hospital at 4 cm. at 3:45 p.m. and med-free birth at 4:55, home the next day because I was feeling fantastic. But both babies came out, both were and are amazing little boys, and this baby will join our family soon no matter the particulars. I am amazed to be here, mostly ready both practically and emotionally, and incredibly thankful to God for the health of this baby and the many wonderful people who have supported us with prayer and/or help along the way. I am thankful for an OB who shares my faith and brings trust in God to every aspect of her life, including, especially, care for mothers and babies. Please pray that she doesn’t miss this one! Luke’s timing was a bit of a surprise to all of us. 😉

I will post the big news once we have it, and baby pics…sometime. Hooray for wifi at the hospital!

At this point I am scheduled for chemo on Fiday. No Black Friday shopping for me! We have Chris’s mom, our nanny, and playdates for boys all lined unto help us muddle through the next week…it’ll be a little crazy, but it will work out.

Not much more to say here, other than thank you to all for the prayers and support. I am so blessed, and very ready to meet this baby.

Posted in Pregnancy | 2 Comments

Mid-point

Another Thursday, another mid-way mark between one treatment and the next. I am feeling surprisingly good, to the point where it seems like I have as much energy as I’m going to with being eight months pregnant. Both times before, a week out felt like I was still climbing back up. It might be my body adjusting, it might be that I spent the three “down” days (Saturday, Sunday, Monday) truly down for the most part, so that by Tuesday I was able step cautiously back into normal life without wondering if I was on the edge of relapsing.

It might also be two very uplifting events between yesterday afternoon and today. The first was the return of electricity (and heat!) after nearly 48 hours without in the wake of Hurricane Sandy. We were very blessed that it was not any longer and that our area, in general, is functional in terms of services and resources, but the outage went long enough that the end of it was a major mood boost. The other boost came my way today at the OB office, where ultrasound showed that baby is, once again (and for GOOD, by golly!) head down. Really, other than being pre-term until Monday, at this point baby can come any time. Okay, not really…but really. Sooner is not ideal, right after chemo is not ideal, but now that we can do this without a c-section I feel much more at peace. Even the idea of induction, which has been on my stress list for weeks now, doesn’t seem as hard to take. It’s still not my favorite idea, but I know I can handle it.

Although, to be honest, I’d rather not, so prayers for spontaneous birth in the November 16-18 range are appreciated. 😉

After rescheduling her flight due to the hurricane and then hitching a ride to the airport (with another woman and her daughter) when the bus driver announced that they were running weekend schedule today, my mom finally made it onto her plane and, I assume, is in the air headed home now. She will be back next week…sorry, Dad!

One day late, but HAPPY BIRTHDAY to my wonderful father! It was a milestone birthday but I’m not posting numbers! He spent it without my mom thanks to the craziness out here, and I want to say how thankful I am for him and all the ways he loves and supports me (us), and not just right now in “crisis mode” but all the time. Love you, Dad!

This is a minor digression, but please pray for the family of a woman from my hometown named Kristen. She was a mother of three who lost the battle after five rounds with cancer in various forms. Please pray for her family, especially her young children, as they mourn. Her funeral is next Tuesday.

To say that Kristen’s story and death is hard for me is a simplification…on one hand our situations are fairly dissimilar, but on the other she was a woman close to my age, with children, fighting cancer. Too, too many others are in the same situation, but knowing someone even slightly who is going through it makes it much more real. Yes, I am in the fray myself, but there is still room for the awful realities and suffering of cancer to become even more real to me. It is much closer to home for many.

There is also a local woman we know of, a friend of a friend, who is dealing with cancer that was discovered while she was pregnant but not truly diagnosed or treated until after her baby was born. She has written very thoughtfully about the experience and her story has helped me to be grateful for mine. On the medical front, we were never told that we had to choose between me and the baby; we were never even told we might have to choose. From the first, my oncologist knew and told us that chemotherapy could happen during pregnancy and, significantly, without serious effects for the baby. Between the type of cancer I have and my doctor’s level of informedness, I did not have to mark each week of this pregnancy as one that increased my baby’s odd of living while decreasing mine. Many women do. Our baby is thriving and I am in no more danger than I ever was. Please pray for those who do face fear and increased danger as cancer patients while pregnant. I really can’t articulate the mix of emotions brought by just thinking about how different this could all be.

God is good.

Posted in Family, Hodgkin's, Pregnancy | 2 Comments

This post brought to you by the letter “P” and the number “12”

Please, no political Sesame Street stuff…gaaaah!

S’funny…when you are pregnant? And doing chemo? And have an intrusive mass by your heart? They all want you to DRINK WATER (and other non-recreational beverages). Because dehydration is bad for blood volume, and bad for cancer clots, and can cause low amniotic fluid and contractions. And then, once you’ve followed orders, a full bladder can cause contractions! So you take care of that but then drink more water, and…well. ‘Nuff said. Oh, except this: at eight months pregnant, getting up all day and night to deal with hydration issues is a bit of an adventure.

Twelve. 12. Ever since I learned about factors, I have really liked the number twelve. For related but expanded-upon reasons, I also like 36 (weeks pregnant tomorrow!) but I digress. 12 months to the year, apostles to Jesus, items in a dozen, rectangles on a Hershey bar (and yes, I now know that I can do better). Factors: 1, 2, 3, 4, 6, 12. Easy reduction of fractions: 1/6, 1/4, 1/3, 1/2, 2/3, 3/4, 5/6. Quick steps from one major percentage to another: 25%, 33.33333%, 50%, 66.666666%, 75%. And, the grand finale, 100%. Which is what I’m aiming for in terms of chemo completion. Twelve treatments. Three down…one quarter…25%. Already! If I can stay on schedule I will tip over the halfway mark to 7/12 complete before the new year, and then we will officially be on the downhill to early March and that magic 100% completion.

I like 36 because it has a LOT of factors and is the product of two squares. Just FYI. 🙂

In other news, I have been drinking a LOT (of water) and resting a lot and overall feeling…exhausted but otherwise decent. No nausea, no faintness, not even much heartburn. It was somewhat annoying/disheartening to see more hair come out on my towel when I washed my hair today. It has been coming out a few loose strands at a time over the past week, and it seems like the pace has picked up a bit this weekend…still in a thinning pattern (not clumps) but definitely happening. I am still adjusting to my short haircut, and it looks like the big adjustment is coming. The fatigue wanes, the PICC line hides inside long sleeves, but the lost hair will, I feel, mark me as bona fide. Good thing I’m in therapy.

We are in the path of Hurricane Sandy’s effects, which has delayed my mom’s expected return home by two days. Please pray that she can get home for a few days before flying back out on 11/6 to do all of this over again!

And now I will leave you with a quote from Luke, age 2.5 years, spoken to Nana after lights-out: “I not sleep aaaaalllll night, I just say, ‘Daddy, Mama, Nana!'” He’s a sweet (sleeping) boy. 🙂

Posted in Family, Pregnancy | Leave a comment

Settling in, unsettled

Highlights from the past week and a half:

–spent three days after treatment doing a whole lot of nothing, but managed to avoid landing back in the hospital. For these small victories, we are thankful.

–hired a part-time nanny to take over in the mornings so Chris can get out the door, to give the boys some stability in the daily routines, and help keep regular household tasks under control while I am cycling through times of resting flat, having a little energy, being out of the house for three days in a row of appointments each week, and, sometimes, even feeling mostly normal. Oh yeah, and a newborn.

–Speaking of a newborn…we found out last Monday that Baby Day is officially set for November 19th, the Monday of Thanksgiving week. Assuming I don’t go into labor naturally before then (which I kind of assume but don’t consider guaranteed), I will go for an induction on the 19th at 39 weeks pregnant. Not only was the delay a relief (as in, we are not having a baby THIS WEEK), but obviously the baby’s health and my chances of a successful induction have much better odds the later we go. So that was good news.

Round 2 of chemo went better, overall, than the first round. I knew what to expect, in general, and I was much more careful to stay in bed and keep hydrating. I stayed in bed all day Saturday, then spent Sunday sitting on various couches and getting up more for “little things”, and then…Monday was back to flat in bed most of the day. Next time I really will stay in bed for the weekend and hope that Monday is a better day. Note to self: just because I can at this moment doesn’t mean I really should in the grander scheme of recovery from a treatment.

All of this recovering essentially meant that somebody else had to be me during that time. For this round it was Chris’s mom, and next time it will be my mom again. Looking at all of this in the light of five more months, and adding a newborn into the mix (funny how that slips my mind sometimes!), along with some gentle and some direct sharing of thoughts by concerned parties 😉 convinced us to take the step of hiring a part-time nanny for the coming months. While I am in my flat-appointments-some energy cycles, and despite the generosity of many friends who have offered to take the boys when needed, we need stability more than ever, and if it’s not coming from me doing my usual routine, then having the same person care for the boys in our home is the next step away from that. Our families have been fantastic with physical support, but they can’t be here all the time, and even when they are here, they get tired too!

I could say I have mixed feelings about taking this step, but really, that’s not quite accurate. I am relieved that we did it, relieved to think about the load that it takes off of my husband and the relative normalcy it will give to our household. I am, by turns, irritated, upset, angry, and/or forlorn that it was a step we needed to take. I feel the same way about many of the things I have faced or will be facing in all of this: getting a PICC line and living with it, the endless round of appointments, chemotherapy, cutting my hair, near-guaranteed induction, not nursing this baby as a newborn, all of the follow-ups for years after treatment is over, all of the potential side effects of lifesaving chemotherapy which ironically include other cancers in addition to heart damage and early menopause. I don’t want any of it! But I want to live, and I want relative sanity and health for my family in the process, so I have no choice. Okay, I could have not cut my hair. Since it seems like it might be starting to come out, though, I am just finding the best way, for me, to deal with inevitable reality. Bit of a theme.

Moving on. Just under four weeks to Baby Day, and we are in many ways ready. Our room is rearranged to hold the crib again, our smallest baby clothes are washed and put away, registries are complete, we have a carseat, and Grandma is scheduled to fly out to hold down the fort for the big week. Diapers and formula are a Target run away. All I need to do is to, uh, not go into labor in the week after treatment. And then, give birth. Easy peasy, lemon squeezy, as certain little boys I know would say. 😉

In the meantime I am enjoying the last days of having this baby inside. As perilous a journey as it has been for this little one, s/he has thrived in what could be considered a hostile environment. Baby has been protected by the hand of the Healer, and I am thankful. I am focusing on enjoying all of the movements (yes, even the “oof!” ones) and just knowing this little person is a part of me. I may not contain multitudes, but I contain one living, moving, amazing human being, body and soul. It’s not an experience I am anxious to have ended.

So, tomorrow I go in for Round 3. I feel like I have a bit of a handle on it now. I will rest and hydrate and be thankful for the helping hands who care for my children and bring meals and groceries. My husband will bless me by bringing Communion to me, as well as water and food and love and comfort and wisdom. The blessings and thankfulness will salve the helplessness of doing the nothing that I must do to weather this successfully. And then I will recover a bit, live another two weeks of my life, and do it again.

Posted in Family, Hodgkin's, Pregnancy | 12 Comments