7 Months!

Today, June 30, 2008, my wee (let’s get real) giant one is 7 months old!

7 months!

I can’t even believe the time has passed so quickly. Almost 5 months ago our sweet little son came home to his forever home.

And in the intervening 5 months, our little guy has grown both physically and mentally. I don’t remember how much he weighed when I took him to his 2-month check-up after he came home, but I know he was above the 97 percentile for both height and weight.

Then for his 4-month check-up, he was 5 kilograms, or about 11 lbs. and again above the 97 percentile for height and weight (although in the same general spot as before).

Finally, just a couple of weeks ago, we took him back for his 6-month check-up and my little guy (I can’t stop using little, although he’s anything but!) had doubled, yes DOUBLED!, his weight to 10 kilograms or 22lbs. and is still at the same spot on the growth charts for height and weight.

He’s gonna be our little giant.

And then there is his hair. Everyone comments on his hair. But I am not cutting it. Now that we have a good texture going, I want to see how it develops. I’ve already broken every taboo about cutting ethnic hair, so now let’s let it grow! At present he’s got the cutest curls on the top with less curly but still wavy hair on the sides and back. I hope the curl trend continues, but of course will be happy with whatever develops. He’ll likely hate it no matter what it is, don’t we all?

And our little giant is developing some incredible skills. As I’ve mentioned in previous posts, he does this little clapping along to his own little rhythm thing that is so flipping adorably you’d have to have a heart of stone not to be touched by it.

As you’ve seen in video, he’s mobile. Crazy mobile now. Boy can scooch/crawl himself from one side of the room to the other before you’ve even had a chance to refocus your eyes. What we like to do now is to gate off the upper level of our home and let him have access to the bedrooms and office. Little (I can’t stop using it!) Oliver makes his rounds, inspecting his home, first intrigued by one thing in one room and then suddenly beckoned by something else in another. Or he loves to pull himself up on the upstairs banister (no worries, we’ve made sure it’s uber-secure) and is just beginning to scooch himself around while holding himself up.

But I would say my son’s MOST.FAVORITE.ACTIVITY.PERIOD! is his Johnny Jumper! He honestly cannot get enough. To the point where he exhausts himself out and gives his little toes blisters (now we’re making sure he has on socks!) Such a funny little guy.

So happy 7-months my dear son. You’ve come into our lives at the this time for a reason. And although I don’t always feel like I can give you what you deserve, know that Daddy and Papa both fought very hard for you to be part of our forever family, we’re still fighting, and we’ll keep fighting because we’re not letting you go!

I Get By…

With a little lot of help from my friends. Well, and my family.

First, I’d like to share with you all two dear friends who are helping me out  by participating (actually Jenna participated, Jenna how did you do?) in the Relay For Life to raise funds for the American Cancer Society. You can find out exactly how they use their funds here.

So as I said, my dear friend Jenna, whom I’ve known ever since I lived in Milwaukee where we did our undergrad together (and I gave her first awesome haircut!) recently participated in the Relay For Life in Milwaukee.

She sent me this photo of a luminaria that she made to line the route along with the following message.

“For the relay 4 life we were able to make these luminaries – yours made it through strong winds and heavy rain. I am sure that is a sign of the strength you have – stand tall my friend! Thinking of u lots! xoxo”

Thanks so much Jenna. I appreciate you doing that so much! Mwah! (And yes everyone, that’s me in my “Blonde Bombshell” Days!)

Another dear friend Adele, whom I met through my cake endeavors and is sometimes generally referred to as one of my cake friends, is also doing the Relay For Life in Colorado and has the following message to share:

BRING IT ON is our rally cry!!

Hi Everyone! I wanted to share with you what I’m doing to show my support to Frank, and others fighting their own “squatters.” I’ll be participating in the Northern Colorado Relay For Life in Windsor, CO on July 18-19.

I joined the relay team called Faith Steps for a Cure several months ago- long before we knew there was a squatter among US. Obviously, in the time since then, the Relay has taken on a whole new meaning for me- it’s my way to show my dear friend Frank how much I support and love him. And, it has been a way for many of our “cake” friends to show their support as well. With their generous donations, we have raised over $800- well beyond what I ever expected to raise!!

I have asked Frank’s permission if I might also share the information here, which he has graciously granted. The outpouring of love and support through your comments, thoughts, prayers, and general positive vibes is amazing- and I know Frank is so very grateful. For those of us who do not live in Southern CA and want to show our love, I think this is a great way to do it!

If you would like to donate to the American Cancer Society and show support for Frank and all of those courageous enough to tell the squatters to take a hike, you may do so through this LINK (You can click on “LINK” and it will take you to Adele’s homepage where you can choose to make a donation to her Relay For Life efforts.)

Thanks for reading and BRING IT ON!!!!!!

-Adele

Again, click on “LINK” and you’ll be taken to Adele’s RFL Homepage where you can make a pledge for her effrots.

Thanks so much Adele! You make me proud to call you a friend.

Edited To Add: anyone who has or does make a contribution of $25 or more, will be put into a drawing for a handmade gift by me. It may not be much (likely a choice between an apron, a set of embroidered towels, or a baby item) but it will be heartfelt and hand-crafted by me. So please clink on the link above and help Adele to help people like me.

One of my friends, who gives me support daily, does so not by walking and raising money, but by chatting with me online, by sending me funny forwards, sending little packages full of yummy coffee flavored-granola bars and by putting her money, creativity, time, and energy into making things like this:

Isn’t it awe-inspiring?! Yep, Joansy did it again with this amazing creation. In the note she sent with it, she explained that she wanted me to have a smaller quilt (compared to the larger one she made me a few years ago that is probably queen-sized!) to be able to drag around with me as I need it to nap or whatever. This quilt now has a happy home in my bedroom where I can grab it when I need to cover up and snuggle while I nap.

(When Joansy found out I was going to the hospital, she asked if I was taking my quilt with me. To which I replied with the most awed expression: Why would I take that beautiful quilt to the hospital where surely someone is going to covet and likely steal it from my room? I can’t take the anxiety. It will be safe at home for my use upon my return!

Thank you Joansy. You are like a second mom and I love you dearly (even without all the spoiling!)

Then of course there are the friends and family who go out of their way daily to help make my treatment and daily life a bit easier. Marguerite & Roger, Louise & Troy, Ben & Fajima, Vanesa my neighbors Kim, Ruth, Raphael and Merris, Stephanie and Greg (and little Henry!) who have all arranged their lives to ensure that my family has a hot, healthy, and delicious meal on the table every evening.

My mom who will be back tomorrow for just under 3 weeks to help me take care of Oliver (and over course take care of her baby, ME!). Who will then be followed by Lisa from Milwaukee. And as if she hasn’t given enough of herself, Joansy will be back for a two-week stay to help me with Oliver. And then one of my longest, dearest friends Kathy will be here during her second trimester to help us out at the beginning of August.

And finally, there are all of you, who take time out of your busy, crazy, hectic lives, to stop by and read, and sometimes (or almost always!) comment to give me encouragement and to show your love.

I mean, really, it’s all to much and as I think of how cared for and loved I am, I’m beginning to well up with tears (which I haven’t done since I entered the hospital). But these aren’t tears of fear or angst. These are tears of joy. To know that I have such an amazing network of friends, whom I know both in real life and via this wonderful medium called the internet, gives me so much strength, and energy, and mostly hope.

Thank you.

And of course, my two biggest fans and my reasons for being:

I’ve Lost Track Of The Days!

But I guess that’s alright. Today is Friday and I just checked into the hospital for the next leg of chemo which will conclude my first round of chemo.

But let’s talk about more positive things. Like the great day I had yesterday with my family and our friends!

Yesterday, My Partner, Oliver and I went to the beach with our dear friend Marguerite and her daughter (our “niece”) Makende, and my dear friend Vanesa (who makes a kick-ass chicken picata AND baked macaroni and cheese and ham that you’ll hear more about later!).

So in the early afternoon we all packed up and headed down to Santa Monica for a walk at the ocean, which I realized was Oliver’s first time at the ocean! He was so happy to be in his stroller, looking at all the people and things there are to see at the ocean. (Did I mention that my sweet little babe is pulling himself up onto furniture (mostly his crib railing when he’s supposed to be sleeping!) AND clapping?! Just out of the blue he’ll start clapping his hands in some rhythm known only to him. It’s adorable!). We walked down to the Santa Monica Pier and peeked in on the Carousel (which Makende made clear she did not want ANY part of!). Then we walked down to the end and just looked at the rides and vendors and people.

On the way back Oliver began to get a little tired of his stroller, so Papa gave him a ride.

The two loves of my life.

(Go ahead, laugh at my hat. But it kept the Southern California sun off my chrome dome!)

Then after our beach trip, we got together with Makende and her parents, and our dear friends Troy and Louise who live across the street from us to celebrate Makende’s THIRD (I can’t believe it!) birthday.

There was amazing food, thanks to Vanesa and a neighbor who made a delicious, cheese-dripping vegetable lasagna!

Then there was cake from our favorite bakery (Berry Blossom!) and blowing out of candles.

And of course gifts, which I think she might have liked (a double lawn chair, a picnic blanket, and a picnic set (in the orange wrapping).

Such a great day! I was definitely tired by the end (well, middle!) of it but I wouldn’t have traded a minute of it for a nap.

I can’t think of a better way to spend my last day before going into the hospital for four days!

Now it’s time to get down to business and do what I have to do to get back to my family and friends. I’ve recalled a saying my therapist used to say, “You have to go through it in order to get past it.”

So bring it on!

Days 9, 10, & 11

Today I feel the closest to normal that I’ve felt in a while.  Well, what I found out was almost a month.

I drove to Trader Joe’s to do some grocery shopping (and then napped for almost 2 hours afterwards because I was so wiped out!).

Then later in the day I drove to my doctor’s appointment, which had been scheduled as a routine check-up a few months ago, but ended up being a check-in with all that’s going on.  After I was done I had enough energy to stop at F&S to get some buttons to finish two rompers I made for Oliver prior to going into the hospital.

Unfortunately while at my doctor I had an unsettling realization.  In my mind I went into the hospital on June 5, but when my doctor accessed my records to complete the short-term disability forms, she asked if I was sure because all of the records began on the 5/29.

I knew for certain that I hadn’t been hospitalized the week prior and that there had to be some sort of mistake.

So I called work to find out when I was out.

Sure enough, I had been hospitalized on 5/29/2008.

I had lost a whole week of my life in my mind and was so certain that there had to be some other explanation for what happened.  I guess it’s not that big of a deal now, but it felt like it at the time.

The second realization I had was my misunderstanding about the chemo and how it would affect me.  I remember the doctors saying it’s the toughest in the beginning and then it gets a bit easier.  My doctor clarified my misunderstanding (as gently as she could) that due to the aggressive nature of this cancer and the chemo that was required, it was only going to get more difficult as the chemo progressed.

Another realization that scared me to death.  Getting through each day is such a challenge, both mentally and physically, that I can’t imagine it getting any more difficult.

I wish I could say I am able to find solace in my son, but unfortunately most times I find myself with little to no energy and patience to take care of him.  It breaks my heart to admit this, but that’s what’s going on right now.  I feel so guilty, like I’m being a bad father, but I don’t feel like I have the energy to care for him.  Which makes me all the more grateful for our friends who are rearranging their lives to come and stay with us to help me care for him.

And then there are moments like tonight, as I was giving him his bottle after his bath, and he was resting in my arms, that I knew that being his father is the most important thing in my life.  I just hope to have the strength and energy to provide him with the love and attention he needs and deserves.

Days 7 & 8

Yesterday was a very cathartic day for me.  I’ve been waiting to hear from my insurance company to make sure the chemo I was supposed to take today was covered.  They finally came through with the approval, but then the Oncology Center didn’t have any open appointments and as of yesterday morning the soonest they could get me in would be Tuesday!  5 days after the scheduled infusion.

Luckily I heard later in the day that they had an appointment open for me.  Whew…

This morning our friend Sylvie and I took Oliver for his 6-month check-up.  He’s doubled, DOUBLED! his weight since his 4-month check-up!  He now weights 10 kilos or 22 lbs and is 29 inches long!

The doctor was impressed by his ability to sit up so erect without supporting himself and his general development.  Then came the shots.  There is no pain like hearing your child cry that cry of pain.  It makes me well up justing remembering how he cried.  But it was short-lived and soon he was sleeping in the car on the way home.

I was able to rest a bit before Vane picked me up to take me to my chemo appointment.  Turns out we didn’t need to show up at 2 (I was there at 1:40) because they didn’t need to draw blood to check my levels because my levels were good (the first “positive” news I’ve heard and that came from the  nurse!).  So we waited until just before 3 for my infusion, which took about 10 minutes total.

When I got home, I took a short nap, then got up and took Oliver and Theron for a walk in an attempt to find reprieve from the heat.  It’s been in the low 90s this week and is just generally unbearable.  Luckily our home stay s rather cool, I guess due to its layout.  I spend a good portion of my days on the front porch, which faces west and doesn’t get the sun until later afternoon.  By then I try to stay in the downstairs of the house to keep cool.

I finally spoke to my doctor today who has been traveling.  He reported that my blood levels look good and are at or above where he would expect them to be.  I will go into the hospital next Friday for four days, give or take, depending upon my blood levels.  Then after that I will recuperate until my blood levels are high enough for them to begin the next regime, which will be about 5 days in the hospital, then 2-3 weeks of rest and recuperation.

I am blown away by the kindness of our friends and neighbors.  Each night this week our family has had a fresh, delicious meal made for us by our friends and neighbors.  Without these meals each evening, I’m not sure what we would do for dinner each night.

In addition, I continue to get calls from neighbors expressing their sorrow and sadness that I’m going through this and to offer to help in any way they can.

This has definitely been a good lesson for me in how to accept and ask for help.

I am still trying to make sense out of why this is happening.  Perhaps I will never know a “why”.  Perhaps all I can every truly understand is the “how” as in, “How I choose to face each day and how to appreciate each moment that is given to me.”

I am still very worried about finances and how I am going to take care of my son after our friends have left, but overall I feel fortunate to have such an amazing support network, part of which is each of you who visit and comment on my site.  As I’ve said repeatedly, I savor your comments, your words of advice, and just the ‘hellos’.

Days 5 & 6

Slowly but surely I can feel myself getting stronger both physically and mentally.

Yesterday I went for two walks around the block with my mom and Theron, as well as a trip to Trader Joe’s.  That wiped me out.  My neck has been getting super stiff and sore to the point that I feel like I can hardly hold my head up.  The doctor thinks it may be some sort of infection and prescribed something for it.  Slowly but surely it seems to be getting better.

Last night my mom went back to Wisconsin.  That was very difficult because I’ve relied on her for so much over the last couple of weeks.  She’ll come back for my major chemo treatments (the ones that require a stay in the hospital).

Today was an even better day; as I said, each day seems to get better and better.  I had a dream that I can only remember vaguely on the periphery, but I remember the message being, “Do something that makes you feel good.  Sew.?

So I got up feeling the best I’ve felt in a while and walked into my sewing room…  And was utterly deflated.  Someone left my sewing room in such a mess!  Not even my newly-found strength and determination was enough to get me through that, so instead I played with my son.

I’ve been waiting for insurance authorizations for several things, one of which was an intrathecal injection of chemo.  They attempted doing it before I left the hospital on Saturday but couldn’t find the right position (after SEVERAL attempts!).  So finally today it was authorized and I went in to get it done.  They used some sort of x-ray as a guide for where to place the needle.

Turns out that even with the help of the x-ray, they had a difficult time determining the best placement of the needle.  The doctor explained that the cancer tends to dry out the fluid in the spine, thereby making it difficult to find the correct placement and injecting chemo to fight the cancer.

She reassured me that future injections should be much easier as the chemo begins to do its job and eradicates the cancer.

The highlight for me yesterday was seeing Oliver begin to crawl!  I was sitting with him in his room and he pushed himself up onto his hands and knees (which he’s been doing for a couple of weeks now).  Then suddenly, he moved his hands and knees in unison and crawled a few “steps”!

Then he got so excited he lost the rhythm.  But there have been many more attempts, both successful and otherwise.  It was very exciting, and healing, to watch.

It must get redundant to read, but thanks for all your well-wishes.  It does help to read them and I keep bits and pieces of each of them with me.

Days 3 & 4

This is going to be short and sweet.  Words cannot begin to express how crappy I feel at the moment.  But I wanted you all to know the latest.

I ended up going home yesterday afternoon after a several failed attempts at injecting chemotherapy into my spine.

It’s strange, but after wanting to badly to go home, after being here, I wanted to go back to the seclusion and silent of the hospital room.  Today is better, but still that feeling remains.

Today was my first Father’s Day and although it was memorable, it was far from enjoyable.  I am having a very difficult time adjusting.  I think I would get along quite nicely by simply staying in bed all day, but some words from one of my doctors to “resist the fatigue and stay action” makes me feel guilty about doing that.

Despite that, I have taken several short naps throughout the day, trying to balance the warring feelings inside myself.

Tomorrow I have an appointment in the afternoon for an injection to help boost my white blood count.  At some point I will also need to have the chemo injected into my spine, they think guided by x-ray or some such.

Thank you for all of your well wishes and know that although I don’t respond, I do read them and each and every one boosts me up.

xo
Frank

Day 2

Day 2 (yesterday) was much less eventful (Thank The Powers!) than Day #1.

Well, first of all, I have no hair left to shave. Well, I do, but that would require me either get into some very compromising positions, or to pick up one of these. Neither of which I want to do, so I’ll keep what I have.

I woke and noticed first thing that my hips and pelvis were much more mobile and in much less pain than they’d become since I was in the hospital. (Apparently because the lymphoma is in the bone marrow down there, it’s causing problems for those areas. So much so, that I have what’s called a Patient-Controlled Analgesic machine that dispenses dillauded intravenously when I press a button.). I was able to get out of bed without having to maneuver and lift my legs with my arms! And there wasn’t any pain from walking! It was really impressive!

Around mid-morning, a very friendly-looking woman came in and said, “I’m the Discharge Nurse and I need to prepare some things for you so you can go home tomorrow.”

I almost jumped out of my bed! I get to go home! I mean, I knew it would happen, but they were saying they’d have to keep an eye on me blah blah medical jargon, etc. But here was a real person preparing stuff for me to go home!

The rest of the day was uneventful until around 3pm, when I GOT A FEVER! UGH! Talk about a buzz kill!

So my support team (Mom!) kicked into action by making ice packs and the nurse gave me Tylenol.

In the early evening, the nurse hung the chemotherapy bag from the IV pole and it ran for the next 2 hours.

Chemotherapy with a fever.

Always a winning combination.

Unfortunately I ended up feeling pretty crappy for the rest of the evening. And the fever continues even as I write this.

Day 1

(I apologize in advance for what have to be innumerable grammatical and general language mistakes.  The pain killers prevent me from keeping my eyes open for periods longer than 3-4 minutes at a time!)

Day 1 of Chemotherapy was not one of the highlights of my life (although it did end up feeling like it was one of the longest of my life!).

I had decided that I was going to claim as much power during the chemotherapy process as I could, so asked my dear, sweet, beautiful partner to bring the hair shavers and after little ado,

On My Terms!

Haven’t you always wondered what you’d look like without hair? This was such a liberating, and dare I say, “fun experience!

First, I’d always wondered if I have the technique to shave a head correctly (sorry, old Beauty School Day sneaking through there!). There really are right and wrong ways to shave a head. Done correctly and hairs on the head will shimmer in the light. Done incorrectly, well, let’s just say it could end up looking like a weed wacker got taken to your head!

Then of course I wondered what this big ole’ brain bag would look like without hair. I’m biased (and severely hopped up on pain killers, but from what I can see (and remember long enough to judge and comment on!) I think I’ve got a right nice shaped head! Although not having bangs makes that big old bump (what is that anyway?!) bigger, and oldder, and bumpier!

But most of all, I had to take my own hair off of my head when I wanted to do it, not after watching clumps and gobs of it fall to the ground. The doctors said that not everyone loses their hair, but that most do. I’ve never been a gambler, but “most” doesn’t sound very favorable! So off it came!

(Speaking of odds! Did you know that in the United States, only about 100 new cases of Burkitt’s Lymphoma get diagnosed with each year? YesserrrreeeeBob! I’ve got luck! Source )

So after the New Do and Realizations of how lucky I truly am, I ordered and ate breakfast. Which was good I had done it quickly, because they (which means someone from the medical complex) showed up to install a new IV (the last one was looking a bit haggard!) and to begin chemo for the day (so there aren’t, nor will there ever be photos of any part of my visit to the hospital, just cuz…. eeewwwww….)

Unfortunately things got off to a really bad start. The very first bag of chemo gave me the most awful shivers to the point that my body was quivering and quaking. Normally that wouldn’t be such a bad problem, but with my pelvis being so painful, every shiver and shake brought tears to my eyes!

So the doctors lowered the rate on the first bag of chemo and gave me some demerol (a narcotic pain killer). They covered my blankets with a mountain of warm blankies (it may have been closer to 3 or 4) and I soon stopped shaking a felt more comfortable.

Unfortunately, the Demerol does not like to play nicely and ended up making me very, VERY groggy. So groggy that I would be sitting up in a chair or in bed talking with someone, and I would just stop talking and fall sleep. In. Mid. Sentence!

Actually, they’re not sure now if it was the chemo or the demerol that did it, but it was annoying (I’m sure for all parties involved!)

After the first bag was done, they did the intrathescal (spinal tap) treatment. For the spinal tap I had 2 weeks ago (is it a shame that I’ve had two spinal taps in a matter of two weeks?!) they had me lay on my side on my bed in a very tight fetal position. For this one they had me sit on the edge of my bed leaning forward onto one of the hospital overbed table, which was raised to it’s highest position. Then they did their magic.

Initially they numb the area around where they’re going to inject the needle, then they need to get the needle perfectly located into the spinal column. This is actually the most painful part of the whole process. Feeling that needle being moved around in SUCH a sensitive area was really nauseating (despite the anti-nausea medication!)

Once they have the needle where it needs to be, they need to remove fluid from the spinal column to test for the presence of the lymphoma. Then they injected chemo into the spinal column. Sounds easy as cake, right?

HOLY HELL I CRIED FOR MY MOMMA! (Who was sitting there, holding my hands!).

Finally, after what felt like an eternity of poking and prodding (but which Mom says was only 15 minutes!), they found the sweet spot and accomplished their mission and allowed me to rest (bastards).

A bit later My Partner brought our son in for a short visit which helped my spirits so much!

And finally, my first round of chemotherapy were completed. First the nurse give me an injection into my IV line which was pretty darn which (which the rest of it was NOT!). Then she hooked up a bag of florescent orange liquid and let that drip out. And last but not least a bag of something clear an unremarkable which took 2 hours.

I was so happy to see the last few drips of that clear bag make it’s way into my line. I had officially made it through my first day of chemo!

Bring. It. On.

All the tests have been taken, all the results are in (although I personally haven’t heard what all the results are!), and the doctors have confirmed that I have Burkitt’s Lymphoma.

Tomorrow I begin chemotherapy.

Because Burkitt’s Lymphoma is so aggressive (I went from being basically symptom-free to a member of the Walking Dead in about 3 weeks!), it takes a very aggressive treatment.

This is what they think will be my schedule for the duration of chemo (sorry, I tried putting it into a table, but WordPress isn’t playing nicely):

Regimen A
Days 1-3: Chemo given by IV and by IT (intrathecal or spinal tap/lumbar puncture), in hospital
Days 4-7: Recover at home
Day 8: Chemo given by IV, outpatient
Days 9-14: Recover at home
Days 15-17: Chemo by IV
Day 18: Administer white blood cell growth factor
Days 19-21/28: Recover until blood levels are satisfactory

Regimen B (begins 21 or 28 days after Regimen A began depending on blood levels.
Days 1-5: Chemo given by IV and by IT, in hospital
Days 6-21/28: Recover until blood levels are satisfactory

Then this cycle is repeated so that each regimen has been administered twice.

I don’t really know what to expect during the actual administration of the chemo, so I’ll post as the spirit moves me.

Thanks so much for your comments and support thus far my blog-family. Reading your comments (usually in a pain-killer-induced haze on my iPhone!) is one of the high points of my day!