Friday, December 24, 2010

The Latest

It's blurry, but it's still cute!
   We made it to see Santa at Willowbrook Mall- the kids were so dang cute!  Mykelle was talking to Santa from the line, trying to tell him what she wanted before she even sat on his lap.  When it was finally her turn, she ran up to his lap and told him she wanted a baby Cinderella doll for Christmas and that she's been good!  I sure hope Santa was listening... she'll be heartbroken if she doesn't get that doll!  Evan was good sitting on his lap, but still hasn't got down the asking for a present thing.  He was just happy to see Santa.  

   I've had further updates on the cancer and chemo front, but haven't felt like writing for a while.  Things have been busy and I've been kind of down because I have to be in the hospital for most of Christmas.  But as I keep getting told, it's all so I can experience many more Christmases with my family in the future!  I was able to have another CT scan and a PET/CT scan that came back showing "dramatic" response to the chemo, but there still being some "residual disease" left.  I have yet to hear if the doc will require an extra session of chemo before I go through the stem-cell transplant.  Currently I am in the hospital receiving chemotherapy to bring down my blood count so that I can rebuild it up with twice daily Neupogen shots after which they'll remove my stem cells to freeze for the later transplant, date TBA.  Make sense? :)

   So I'm in the hospital now on my third day of chemo.  Should be out tomorrow evening some time.  It's not been too much fun this time around, though today is a good day.  When I first came in (after a fun morning at the mall seeing Santa) it took the chemo 8 hours to start getting administered to me which meant pushing back when I get out of the hospital.  I was also under the misunderstanding (because the doctors told me wrong) that I'd be getting out Christmas Eve- nope.  Christmas day.  Then, I had a roommate that was "anti-social" as her mom put it.  I guess that means being completely rude to people around her and being whiny and grumpy?  She also kept the heat up to 80 which was almost unbearable!  I asked for a room transfer in the morning after she'd been on the phone griping about her roommate situation  and after she'd slammed the door on me... I guess it pays to complain once in a while- I got transfered to a private room with a view! 

   The same day as the transfer I was scheduled to get a catheter put in my chest where I'll be getting the stem cells removed.  While getting wheeled down on a bed to the OR the guy steering me rammed into the wall- hard!  It was kind of funny until we realized I was leaking chemo all over the floor!  They had to send people down in blue suits and gloves with masks to clean it up- and to think, that stuff they are so scared to touch is going into my veins!   The doc was great though, he played Michael Jackson for us while I was getting the surgery (my request).  When I woke, I was in intense pain so I received morphine and oxycodone- I felt like neither was working and I just had to wait it out.  To top everything off, I threw up- my first time actually throwing up since this whole thing started, so not too bad I guess!  

   I'm feeling much better today- I've been watching movies (thanks Mimi) and was even able to paint my toenails!  Things are looking up, probably since I'll be heading out soon enough.  We've decided to do Christmas for our family another day- probably Monday or Tuesday so we can be all be together.  It's a good thing our kids don't know how to read a calendar yet!

   Once again, I need to thank everyone for their support.  I'm reminded daily how blessed I am to have such caring friends and family rooting for me.  I was sent this quote by C.S. Lewis and thought it would be nice to share-

   "Imagine yourself as a living house.  God comes in to rebuild that house.  At first, perhaps, you can understand what He is doing.  He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised.  But presently He starts knocking that house about in a way that hurts abominably and does not seem to make any sense.  What on earth is He up to?  The explanation is that He is building quite a different house from the one you thought of -- throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards.  You thought you were being made into a decent little cottage: but He is building a palace."

Wednesday, December 8, 2010

Goodbye Hair, Hello Chemo Session #2

   
    It finally happened!  My hair started to fall out last Tuesday, Nov. 30th.  It was just a little at first.  I could pull a single strand and it would come out way too easy.  I started to worry because I knew I was going in to the hospital on Wednesday, and didn't want hair all over my room and bed, but I also didn't want to jump the gun and shave it off any sooner than I had to!  Somehow I couldn't remember how quickly it came out at 16, so I decided to wait.  

   The hospital called to tell me they may, or may not, have a room for me on Wednesday, maybe Thursday.  Supposedly a lot of people put off chemo over the Thanksgiving holiday (can we really blame them??) and it was causing a bed crunch in the cancer wing.   So now I was even more concerned about the hair... to wait, or to shave...?  Papa Skip was needing to plan which nights he'd stay at our place to help with the kids and when to go back to the hotel, making things a little stressful.  To top it off, the hospital doesn't tell you when they have a bed available until several hours before.  I know, it doesn't actually sound too stressful, but it felt like it at the time!  

   While waiting to hear from the hospital, I sat at the table with Skip and Adam and showed them just how easily my hair was coming out now.   Within 24 hours it had gone from pulling one strand out to a small handful with one swipe!

Brings back memories of my Dad's stache!
    Finally, Wednesday at 5PM I received the call, "How soon can you come in?"  Oh no!  Of course I wasn't ready!  Hadn't packed, showered, eaten dinner, or decided on shaving!  I said I could come in at 8 and that seemed to work for the nurses well enough.  Knowing how easily my hair was coming out within such a short time of it starting, I decided to take it all off!  Adam got out the clippers...
                                       

    Papa Skip held the video camera while I pulled up a chair in the kitchen and sat the kids down to a snack (so they wouldn't step all over the falling hair).  Within ten minutes it was done!  All shaved up, like GI Jane or my personal favorite, Evey Hammond (V for Vendetta, thanks for the analogy Alison ;)  Mykee and Evan were so cute!  They kept saying, "You look like a BOY!"  And laughing like it was the funniest thing around, as toddlers tend to laugh at anything remotely silly.  We are a little concerned about the kids getting hold of some scissors and deciding they want to look like Mommy, so we're keeping the scissors out of reach for awhile :)  


   Everyone has been extremely kind in complementing my new look, thank you so much!  I have to say though, I still don't know how to respond when I'm told, "You have a nice-shaped head."  Can I really take credit for genetics??  But thank you all the same, it's nice to know my head shape doesn't make me look weird on top of bald!  

Adam's good luck charm
   I made it to the hospital by 8PM to serve my time.  Because they had so many people in the cancer wing they moved me up to the eighth floor to a private room with a great view!  

Doesn't the lamp add to the healing ambience of the room...?
    Though the first night was terrible because the chemo didn't start until 3AM, the three days (and three nights this time) were much better than the first session.  I still felt weaker than I had the first time, but having my own room made a huge difference.  The only people going in and out were there for me, so I wasn't being interrupted or woken up for anyone else.  I slept much better, and the nurses on this floor seemed much more calm and collected than on the chemo floor.  If all goes well over the next couple of weeks I'll be back to this floor for the stem-cell transplant.  Something to look forward to right?

View of NYC from my room
   Recovery after chemo has gone similar to last time.  Feeling much better today than the first 3 days.  It was a little rough coming home on Saturday- I came home to Mykelle having a fever of 105!  I set my bags down and Adam and I rushed her to the doctor where they determined she had two nasty ear infections (probably from swimming in Papa's hotel pool) and put her on antibiotics.  Thankfully she's doing very well now!  


   The next step in the cancer fight is to get my blood back to normal healthy levels and get another CT/Pet scan to see if the tumors have shriveled up.   If the scans come back looking good, I'll go in for 2-5 days (outpatient) to have my own stem-cells removed from a catheter that will be put in my chest (gross!).   The cells will be frozen and I'll go back into the hospital (8th floor, private room- woohoo!) for a 6 day session of high-dose chemo followed by the actual stem-cell transplant and 10-12 days of recovery in a hospital apartment (to keep me away from outside germs that could cause serious illness).  

   I had a friend tell me the other day after reading this blog that I made cancer and chemo look easy (something about smiling in all of the pictures :)  I think she knew it is not truly easy, but I've been thinking about her comment- it must look easy because I, along with my family, have been the recipients of a tremendous amount of assistance, taking all sorts of forms- from cards with kind words of encouragement, to baby-sitting two unruly kids, to washing my dishes and everything in between!  The sincerity of the people surrounding me in sharing their time, money, affection, and talents has made this journey easier for me and my family to go through.  There is no way to repay the kindnesses shown to us over the past month, but I can tell you all that I am extremely grateful for everything.  With the steady outpouring of love, prayers, and support from friends and family that I've received in plenty, I know the events over the next month can't go anything other than perfectly well!   So to all of you out there supporting me in my fight to kick cancer's butt, thank you for helping make it easy(-er) on me! 

Monday, November 29, 2010

Thanksgiving Week

   This week has been busy!  Thanksgiving went well, we went out to the country to Blairstown, NJ (a little over an hour drive).  Adam's cousin Jes and her husband Marty invited us to their place to share the holiday.  They and Marty's parents, Martin and Nancy Domacasse, welcomed us into their home like we were long-lost friends rather than the strangers we were!
Jes, Amy, Marty and Adam
   We enjoyed a delicious turkey, Marty & Jes's first attempt at a Thanksgiving dinner.  It was a huge success!  Evan and Mykelle were grumpy most of the time from lack of sleep, but thankfully they were able to watch a little Sponge Bob to keep them busy.

Mykee and Papa Skip at his hotel

    Papa Skip has been here visiting with us, helping out with the kids while I am (supposed to be) resting.  The kids absolutely love going to his hotel, where Papa lets them jump on the bed and swim in the hotel pool. 



    I am so happy that Thanksgiving fell between the two rounds of chemo I'm doing.  It was nice to be able to spend time with friends and family this week, and do fulfill part of my church calling by doing Sharing Time in Primary.  I think it will be awhile before I'm feeling this good again, since I go in for the next round on Wednesday.

    This first session of chemo took a bigger toll on me than I'd expected.   From my earlier experience I thought it would take a month or two until I started feeling the effects of the chemo.  I should have considered the fact that this is a completely different set of medicines and a much quicker schedule.   That and my old age probably plays a part...

    Saturday after the hospital was spent in and out of the bedroom, mostly feeling queasy and having a pounding headache.  Sunday was worse than Saturday for feeling nausea, but my energy was coming back, still had a headache.  Monday was getting better, but I was very fuzzy-brained and dizzy from the medication and everything else.  Tuesday through today I have felt much better than those first three days.  I get dizzy from time to time, stomach cramps, and headaches, but nothing too serious.

    On Friday I started getting bone pain from the Neupogen shots.  Supposedly it's a common enough side effect.  It's a throbbing pain radiating out from the pelvis and under the ribs, and can actually be really strong, but it's not sharp.  Does that make any sense??  I've been taking Tylenol or Advil and they seem to work pretty well.  As an interesting side note, each one of those Neupogen shots would cost almost $400 if I didn't have insurance!

    The worst symptom has been in my mind!  I feel like I'm going crazy!  I forget things, can't say words I should know, I zone out in the middle of conversations, and sometimes can't even complete a sentence because I've just lost it!   I've heard of other cancer patients calling it "chemo-brain."  Adam and Skip could tell you all about how forgetful I've been... it's actually kind of embarrassing, but I know it's not permanent.  At least I hope it isn't...

    My last appointment was on Friday where the docs examined my white-blood cell count.  They said my counts are back up and I'm ready to go in for chemo again on Wednesday.  I'm not exactly excited to spend three more boring days of TV and internet in the hospital, but at least there's the hospital food to look forward to!  (I just threw up a little bit... :)

Sunday, November 21, 2010

Home & a Happy Birthday!

   I finally made it home last night around 11 pm.  Melissa was kind enough to come sit at our place while the kids were sleeping (thank you!).  The last few hours of chemo were especially painful... not because of the drugs, but because things just weren't going well!  I was supposed to be out by 9pm, but the nurses were behind.  Then, while I was sitting there trying to grasp my fork and knife to eat a very nasty looking dinner, I realized my left hand (with the IVs) was not moving well- it had blown up like a balloon!  The saline IV had stopped working and was pushing saline directly into my hand which then caused the second IV in my wrist to also stop working!  So I had to be poked again for an IV in the right arm this time (6 times in three days, could be worse right?).  Of course, this all happens 2 hours before I'm supposed to get out!   It caused a delay on top of the nurses being behind but I was finally out of there at 10:30!

Adam and the kids decorated the house before I came home Friday night!
    I came home to the house decorated for my birthday- cute pink and green streamers with balloons all over.  And a banner that said, "Happy 1st Birthday," I guess the dollar store ran out of 29th birthday signs??  I could tell Adam and the kids had a good time decorating!
Yummy party cake! 
   Adam played with the kids most of the day while I relaxed.  I kept disappearing into the bedroom to nap and get away from the chaos that is my kids.   While I was resting, Mykelle and Evan helped Daddy make me a birthday cake!  They even got to ice the cake themselves... which is Adam's way of making sure we don't have to share the cake with anyone outside of family!
My present from the kids was wrapped in a Frosted Flakes box :)
   I received a lot of well-wishes and several packages from thoughtful friends and family.  While I was opening my gifts Mykee kept saying to me, "You need to share your presents Mom.  It's nice to share!"  Of course, the gift she and Evan picked for me had Tinkerbell lip gloss, candy bracelets, and super-hero bubble tape in it!

They take after their daddy.
If the chemo didn't make me sick, this sure would!
   I had to throw in this last picture- it blows me away that one body can be taking all of this medication and still function!  Included here are two anti-nausea medications, one sleeping pill, one pain-killer, one anti-viral, an anti-fungal, an antibiotic, and the shot is Neupogen to help stimulate stem-cell growth to bring my blood counts back up.  I was scared to give myself that Neupogen shot by the way, but it wasn't so bad once I worked up the nerve to jab myself in the belly!  Just saying that probably made my dad queasy... :)


   My birthday may not have been what I imagined it would be at this time last year, but it has been a good day all the same, because of all the love everyone has shown me.  I would like to thank you all for  your kind thoughts and prayers as I've been going through this ordeal.  It was uplifting to come home to such a welcome- the many birthday wishes, visits, gifts, food, phone calls, and more- they all made me feel so loved and blessed to have such wonderful people in my life.  

Friday, November 19, 2010

Day 2 and 3

Nurse protection from ME and the chemo!
   These pics are from day 2, but I am writing from day 3, the 19th.  The first night was pretty rough.  I forgot about ear plugs and just couldn't sleep, even with the ambien.   I felt very sick yesterday morning and asked for some anti-nausea medicine.  They didn't tell me until after that it makes you very sleepy!  So I slept almost five hours yesterday.   I even drank some diet coke (hey, what's a little more poison added to what's flowing through my veins??) but I couldn't bring myself to wake up!  Yesterday was mostly talking on the phone, watching TV, sleeping, and talking with visitors.  Adam visited, and I made friends with Norys, a nice Peruvian lady suffering from Leukemia.  She LOVED Adam coming in to chat with her in Spanish!


     The nurses here have been wonderful, I've had a very good experience.  The patients have also been very sweet and friendly.  The docs could still use a little work in the bedside manner arena, but they are busy with a ton of patients, so I'll give them a little break :)
Kinda makes me queasy just looking at it...
   The food continues to be very bland.  I am on a restricted low microbial diet- no fresh fruits or veggies, and everything needs to be cooked or pasteurized.  The french toast wasn't too bad, had it again on day 3, but the eggs... yuck!

Puffy Face!

   This shot is supposed to show the puffiness of my face!  Maybe if I didn't lift an eyebrow you'd be able to tell my eyes are super- puffy!  I have gained 10 lbs since Day 1- all from water weight!  I go through bag after bag of saline they just keep it pumping!   It brings back memories of having the c-sections and getting so puffy I could barely see my babies!  
 Lover came to visit- who looks more like the cancer patient?? :)
   Not sure why Adam didn't want to smile.  He was so nice- got a sitter and came to see me for a little over an hour.  He brought me some peanut M&Ms and a video game for the computer.  Most guys would bring flowers... Not my man- he knows me too well :)  

  Overall Day 2: Not that fun, but not too bad either.  No throwing up, just a couple of close calls.  Lots of sleep, and I didn't get much done that I brought along.  

   Day 3:  It's only 10 am, so there's a lot left.  So far, I haven't needed anti-nausea medicine, so I am slightly more awake than yesterday.  I slept better last night.  Everyone here knows my birthday is tomorrow and is trying to be extra nice and get me out of here by late tonight so I can really party it up tomorrow... Probably laying in bed while my kids and hubby make me a cake and decorate the house!  The plan is to deliver my last two doses of chemo a few hours early today so I can be out of here around 10:30 pm.  Not bad huh?  Then Nuepogen shots for 10 days at home and back in for more in a couple weeks!

  

Wednesday, November 17, 2010

Chemo Day 1

HUMC Main Entrance
   I'm here in the hospital!  It feels like forever since the first doctor's appointment in September.  I checked in at 11:30 this morning.  It's almost 5 and I have yet to start the chemo.  The IV is hydrating me  right now and supposedly the chemo is being prepared.  

Nurse Beatrice, and my 1/2 of the room.
    My first nurse, Beatrice, was very pleasant and helped me to settle in.  I had to laugh though, when she said I couldn't wear my "nice" clothes while getting chemo, so I should change.  Nice clothes?  I said I wore the sweats so I could be comfortable!  No go, she wanted me in my pjs or the hospital pjs.  Hmmm, a hospital robe with a breeze, or my comfy t-shirt with sweat pants...  Easy choice!

I blame my mother for my small veins! 
   After putting on the sexy hospital robe the nurse came in to put in the IVs.  She was nice enough to consider how annoying it would be to have one in each arm, so she put both in one arm.  I only had to be stuck 3 times!  Lucky me!  Then, another nurse came in and stuck me a fourth time to draw blood :(  I'm getting saline for hydration and sodium bicarbonate to bring down my PH level so I don't get kidney stones.  (BTW, I was kidding about wearing the breezy robe)
Lunch!
   I decided to enjoy some lunch while waiting for the chemo.  I've been told to make sure I eat, even if I don't feel like it so I ordered me a chef's salad with a roll, fruit, apple juice, and olive oil with lemons for the dressing.  The biochemist I spoke with suggested I stay away from vinegar and anything with tomatoes (so I didn't eat those delicious looking tomatoes).  Was lunch delicious?  Let's just say it was edible.  I'm hoping for something better for dinner!   It's great though that I can order what I want, when I want it.  They have a whole menu, with entrees, sides, desserts, and even fruit smoothies!  Too bad I don't think I'll be savoring too much of it... 

   My roomie, Blanche, is a very old lady who is hard of hearing, and very funny.  I went behind the curtain to say hello to her and introduce myself.  After learning my name, she practically yelled, "What do you want?"  I told her I was just saying hello so she responded with, "I need to go pee-pee.  Get my nurse!"  I pushed the call button and when the nurse came Blanche said to her, "Now you have to change me because you took so long to get me a bedpan!"  I'm going to miss good ol' Blanche... she's checking out soon :)  

   I'll be posting again once I've had the chemo drip for a bit~

Monday, November 15, 2010

Finally, a Diagnosis and Treatment Plan!

   
     I am so relieved to finally have a diagnosis- it's exactly what we thought it was in the beginning!  Classic Hodgkin's Lymphoma, which is what 80% of HL patients have.  The good news- it's the most curable!  The bad news, it's stage IV B, which is the most advanced of the "classic" HL.  It's scary, but Doctor Goy was very optimistic, saying he thinks I will be cured and back on my feet in no time. 

     The treatment plan involves two cycles of ICE (Ifosfamide, Carboplatin, & Etoposide) followed by PET scans and whatever else needed to see if my tumors are responding well.  Each cycle involves 3 days in the hospital hooked to an IV through which the chemicals are administered.  Then, 10 days of Neupogen injections I'll be taught to administer at home.  Assuming the scans after the cycles go well, my stem cells will then be removed from my body to be frozen for later transfusion.  I will then receive 6 days of high-dose chemotherapy (inpatient).  Then I'll have 10-12 days of stem-cell transplantation (official name: peripheral blood stem-cell transplant) where I'll be spending each day in the hospital but at night will be allowed to stay at an apartment on hospital grounds.  I won't be able to be with my kids to ensure I don't get sick.  However, I was told I might be able to see them for lunch in the hospital if I wear a mask and refrain from hugs and kisses!  That will be a long several weeks!
 
     Today's appointment was very emotional.  We had to wait 2 hours again just to see the doctor.  When he finally came in and said I had classic HL I heaved a sigh of relief and smiled at Adam.  I even wrote "Yay!" in my planner.   But then it was still scary- hearing I have stage 4, that I'll be having a stem-cell transplant, and that my brothers may have to be tested for a bone marrow match if the transplant doesn't go well.  And of course, I'm sad to find out I'll be kept from seeing my family for long periods of time- though I know it could have been much worse!

    Some things about today have really made me think though, and appreciate why it took so long to find this illness.  At first I was angry when the doctor answered my question, "How long has this been growing in my body?"  He looked surprised, almost like I should know the answer, and said, "years!"  He said that in order to be this widespread, with as many tumors as I have, that it's been growing for years.  The anger came after thinking of the yearly physicals I've been getting like clockwork.  Why hadn't we caught this earlier?  However, the more I thought about it, the more I felt a higher power at work.  I have two children- ages 3 and 2.  So this cancer has been growing for years?  I recall too that I had chest pain with each pregnancy.  It was especially bad during the month prior to conceiving Evan.  I even went to see my family doc about it, and he prescribed a CT scan, as long as the pregnancy test came back negative.  Well, it of course was positive, so I canceled the CT scan and had my precious Evan.  Had I found the cancer before getting pregnant, I could have very well been sterilized by the treatment (it's a common side effect of stem-cell transplants).  I can't imagine not having Evan as a part of our family. 

   So the overall outcome today was pretty good, all things considered.  I will be going in to the hospital on Wednesday to begin my first round of ICE.  I'm trying to decide what things to take with me so I can stay busy- wonder if one of my brothers will be sending me his PSP...?  (Kidding brothers, I would never make you part with your precious PSP!)  For sure I will be taking my laptop to keep my blog updated!  I'd like to write more about my family and about how absolutely wonderful friends and family have been in supporting us- but I think I'll save that post for the long hours of the next few days.  Thank you for following along and for your love and support!

Monday, November 8, 2010

Blessed Beyond Measure




Yesterday I heard a testimony from a 9 year old girl that touched my heart. This young girl has only two close family members in her life, her mother and grandmother, and both women are having serious physical problems. With every right to complain, she challenged everyone in the congregation to show their gratitude at this time of Thanksgiving, to their Lord and those around them, without asking for anything.

This short and powerfully sweet testimony struck me today as I reflected on the many people showing their love and concern for me and my family as we go through this journey in our lives. So many people have come out of the woodwork to show they care. I've had strangers send me messages of courage, offering me both physical and emotional support, having heard my story from a mutual friend. Old acquaintances have stepped forward to connect and share their feelings and memories. Many close friends and family have sent letters, texts, emails, and gifts. I've received countless offers of baby-sitting to help with doctor's appointments or just for a night out with Adam. Many people have offered to make dinner or have already done so, allowing me to rest and enjoy time with my family. I could truly go on and on! I am very fortunate to have been blessed with all of you in my life.
Adam and I celebrated our sixth anniversary this past weekend. We spent it together with our children, realizing that after six years, we are stronger than ever, and we have two little angels with good health and beautiful personalities (yes, I can even be grateful for Evan's screaming tantrums!). We talked about how lucky we are to be in a nice rental home, in a beautiful location here in NJ (we can see the Empire State Building from our bedroom window!), and within the boundaries of a ward that could not be better to us. Our extended family is blessed as well, and we feel loved to have their support.

There is nothing like counting one's blessings and showing gratitude to lift the spirit. As evidenced by this blog, my mind and body have been frustrated and anxious these past few weeks. But after this weekend spending time with my family, some uplifting church meetings, a little yoga, and a lot of friends and family providing support and encouragement, I now feel more centered. Like I can go out there and conquer this trial. I know that I will have help to get through this, from my family, from all of you, and from my Savior. Thank you all!

Now, what have you got to be thankful for?



Friday, November 5, 2010

Events Leading Up To Cancer Discovery

This is a lot of background I know, so scan through it if you're interested. I am posting it for myself, and my family and friends that have had questions about the initial symptoms and events of the past few months. It's half factual, and half emotional journal entry- hope you don't mind!

8/21/10 Sat.: I had a big headache- not quite a migraine, but not a tension headache either- and felt tired and grumpy all day. I noticed it was abnormal, but some days are just rough right?

8/22-9/12: Headaches nearly every day. Body aches, tiredness, grumpiness (and it wasn't just my kids!), low fever often accompanied. Evenings were terrible for achiness and low fever. I also had some tingling in my left fingers, along will a dull ache under left armpit. By now I was keeping track of the headaches (in a notebook) because they were so strong and so much out of the ordinary for me.

9/7-14: Somewhere in this week I changed my diet a little bit. I stopped taking the energy pills I had been taking, stopped drinking so much diet soda, and generally started eating better (and continued to exercise at the gym). The headaches improved drastically, but now I noticed a pain in my chest on the left side. It was different than I remembered the pain being when I was 16 with Hodgkin's, but it still freaked me out. I would wake up from the pain in my chest and have to get up or roll to my stomach to ease the pain. It was so weird- almost like needing to burp but painful, or like the pain when you swallow a chip, but backwards... Like I said, weird! Pain under left arm was pretty much constant, and for about a week there was a pain on the outside of my chest, above the left breast, but no lumps.

9/15: I slept horribly. Had pain in my left chest so I couldn't sleep on that side. Finally, I decided to give my body a once-over to see if there might be any lumps. I truly thought that I did not expect to find anything, but then I left my neck to be the last place I'd check. If that's where the previous lump at 16 had been, why did I save it until the end, if I didn't suspect? I think I was lying to myself. Of course I found a small lump in the left supraclavicular lymph nodes- cool word huh? Very hard to say in every day speech! It's probably needless to say, but I felt like crying all day.

9/16-20: I tried to will the lump away! I kept thinking it was from the kid's cold that I had caught, and the chest pain was just some random trick of the body.

9/20 Mon.: When I tried to make an appointment with a doctor, the earliest date they could give me was Oct. 8. At first, I took that date, but as the day dragged on, I decided I couldn't/shouldn't wait any longer. So I called a local doctor with good reviews (even though he was located in Passaic) and they said I could come in that day! I dropped the kids off with Melissa Avery, and took off. Dr. Soliman was extremely nice- even if he talked about the three things you're never supposed to talk about when meeting someone for the first time (politics, sex, and religion). He was kind enough to admit I needed someone with more training, and referred me to an oncologist for Friday. Dr. Soliman spoke personally with the oncologist and performed the blood work the doc suggested.
I had not told Adam about my suspicions of cancer until this day- he was the first to know for a while, and he seemed quite shocked, as you can imagine. I kept my true suspicions from others for awhile longer, because I really wanted to keep from worrying anyone prematurely. Especially Adam who was very busy with his job, and my mom, who was planning a trip to come see me and not feeling great herself, and everybody else who, as we all do, have worries and stresses that don't need to be compounded with not knowing what, if anything, was wrong.

9/23 Wed.: At my request, Dr. Soliman performed a chest x-ray and sent the results to the oncologist. I looked at the x-ray and my untrained eye saw nothing out of the ordinary. The lump in my neck did not show up that I could see. Adam and I talked about how horrible the waiting was... If we'd only known how long the waiting would (could still?) be!

9/25 Fri.: Went to see Dr. Zaman the oncologist- he only worked weekend nights- odd huh? The wait was over an hour, the nurses were curt and treated me as though I was "faking it." I was asked multiple times if I had a diagnosis or results from any testing, then given nasty looks when I said that I had nothing! Just a tiny lump! Dr. Zaman himself was nice and very professional. Of course, results from blood labs and the x-ray at Dr. Soliman's had not made it to the office. After a short exam Dr. Zaman said he didn't think it was anything serious, but that we had to check it out and I should have the nurse get me an appointment for a PET/CT scan and a Muga Scan (heart) for the following week. The nurse was to get my scans approved by my insurance, and schedule them for early in the week so I could see the doc the next Friday. Blood was taken again.

9/27-10/01 Mon.-Fri.: Dr. Zaman's nurse gave me the runaround. I have rarely been so frustrated! She was curt with me when I called, told me she would call me, then wouldn't call! And when asked the next work day why she didn't call me back, she acted short again and blamed it on the insurance. So again, she would call me. After no phone call all day, I tried calling her... the voicemail was turned on! An hour before closing! When I tried the next day, the receptionist told me she had the day off, and I needed to reschedule my appointment with Dr. Zaman because I had not had my scans yet. Can you imagine my anger? Turns out, the insurance needed just a little more info from her (I called my insurance to see what was going on). When I asked the receptionist if she could just take care of it she kept repeating, "Jill will be back tomorrow morning at 10."

10/04 Mon.: After calling my nemesis Jill several times and dealing with her barely concealed impatience, she finally had an appointment for me to get a Muga and PET/CT scan the next day.

10/05 Tues.: This was the day I knew for sure the cancer was back. After being injected with the radioactive contrast, and drinking two giant bottles of slimy grape-flavored white goo, and almost an hour of lying still listening to Dr. Laura while I was irradiated, I requested to see the PET scan. Having done a little research beforehand (and having had something similar done at age 16) I knew to look for the bright spots that meant cancer. At first, the technician told me the large bright mass near my heart was just the heart muscles picking up the contrast. Then, I saw the node in my neck shining brightly. My exact words, "Dangit, it's cancer again. This sucks!" I went home and told Adam, but I had decided to wait until I knew more from Dr. Zaman on Friday night to tell anyone else.

10/07 Thurs.: I made it two days without telling anyone else! My mom was visiting and we were talking about all of these tests. Sophie called me and asked some very pointed questions. Mom was listening to my end, and I could see her face tightening. When I got off the phone, she asked if I thought it could be cancer again- so I had to tell her I found a lump and had seen the scan. We both cried for awhile- I needed a good self-pity-party right then.

10/08 Fri.: After a 2 hour wait at Dr. Zaman's office, I was given the results of the scans. The doc was starting to wind up for an intro when I said I'd already seen the scan- you can't imagine how his face changed! He seemed so happy that he didn't have to break the news to me, though he remained professional. The heart scan was normal, but the PET Scan showed extensive tumors in the chest, neck, and in the "dome of the spleen." The largest tumors measure up to 4 centimeters by 3 centimeters, and it appears that there are a lot! The doc was surprised that I didn't have more pain or more outward appearance of tumors. He could only feel the one in the neck, though the entire area was swollen. He suggested I transfer to Hackensack University Medical Center (HUMC) to Dr. Goy, and he proceeded to expound on what a talented and wonderful doctor I'd be getting. I asked what percentage he was sure it was Hodgkin's Lymphoma again and he said over 98% sure.
I went home and told Adam and my mom. Afterward, we called close family to tell them the news. On Sunday I told several friends at church and asked for a Visiting Teacher, since I didn't have one yet.

10/14 Thur.: Chopped off my hair! But that's another post...

10/18 Mon.: Met with Dr. Goy for the first time. The reason it took so long to get an appointment with him... My least favorite nurse, Jill, gave me the exact runaround as she had previously! I was given a very quick exam and told Dr. Goy had to see the PET/CT scan and needed to have it sent over before I could have an appointment for the biopsy. I willingly suggested I'd go pick them up and bring them over, just to move things along! It worked well, I was able to get an appointment for the next day with Dr. Inouye.

10/19 Tues.: Met with Dr. Inouye and scheduled my biopsy for the the next Tuesday.

The rest of my appointments and drama will be documented as we go. I took pictures of the neck and bone marrow biopsies and will get those entries made soon. I will continue to take pics so I can keep everyone updated. If you read all of the above- thank you, and I hope you weren't working and wasting your employer's time! If you didn't read all of it, who could blame you?? It's way too long!

Thursday, November 4, 2010

Lymph Node Biopsy


10/26: Biopsy was scheduled for 1 pm. From what I remembered and the scar I have I thought this would be a cinch! Turns out I wasn't exactly correct, but it wasn't too horrible! Adam was able to come with me and Mom was home with the kids so the logistics worked out well. They got me in on time and an IV in my hand (I hate that I have such poor veins- they always go for my hands and wrists!). Everything went smooth and I woke up an hour and half after I went in for the procedure. The crappy part was feeling like I was still so sleepy for several hours after. Poor Adam, he had to sit around for 5 hours in an uncomfortable waiting room!

I was a little disappointed in how large the cut was with 9 stitches. After all, the lymph node was only about 1cm big! But it turns out the doc was able to take out several swollen glands that couldn't be felt from the outside, so maybe he needed more room. Dr. Inouye said he was able to get plenty of tissue and that he cleaned the area out pretty well. The wound was quite a bit more sore that I expected. The nurses told me not to lift my children for about a week... yeah right! The stitches are now out, and it looks decent, though still big and red. I'm interested to see if it heals as well as my other incision did when I was 16.

Goodbye Hair!

Before...

And After!

I wanted to be proactive, and this time around, cut my hair before it started falling out. I went to Portray Salon in Montclair (recommended by Danae- thank you!) and had over 12 inches of hair chopped off! I have sent the hair in to Locks of Love to hopefully benefit someone else. It feels great to have shorter hair! Showers are a lot quicker too :) I'm not sure if I prefer short hair rather than long, but I definitely like it! Most people I've spoken with seem to prefer the shorter hair, but I can't tell for sure if they're just being nice! Adam is not a fan though (he's been more than supportive) so I will be growing it back out- but never again as long as it was!

My Awesome Siblings

After my family found out about me being sick, my brothers and my two sister-in-laws sent me a great care package. They are so awesome! You can see the super-cute sweat outfit they sent so that I could be comfortable when I had to go to the hospital for long days of chemo. The scarf was to warm my bare neck now that I chopped off the hair, and later to wear on my bald head. Sophie also included some green tea and Emergen-C that I've about gone through already. The wad of cash came from my silly brother Zack- he gets a lot of tips and wanted to show his love! It feels great to know they are thinking of me and still trying to help out, even from so far away. I love them all!

Doctors

Dr. Goy (pronounced: gwah)
Dr. Goy is my oncologist- the one that's orchestrating all of my tests, treatment, and care. His recommendations are amazing (feel free to check him out at http://tinyurl.com/2eydh9t).
I've been asked by several people if I like him... It's a complicated question! First, he's obviously very qualified and I like that. He definitely appears to know what he's doing, and I am confident there couldn't be anyone with better knowledge to be treating me. My reservations in coming right out and saying, "yes, I do like him," stem from his bedside manner. I've only been to see him twice, but he's appeared to be very busy and very brusque both times. But does the guy really need to have good bedside manner to be able to save my life?? I don't think so! He did put his arm around me and take me aside after the bone marrow biopsy when I went into shock- he seemed very concerned. To sum up the answer to the question, "do I like him"... Yes, mostly, check back with me in a couple months!

Dr. Inouye
Dr. Inouye is the ear, nose, and throat specialist who performed the biopsy on my neck. He was very friendly, but didn't quite seem to know what was going on. I don't think the departments communicate very well (though both were in the same building, just 5 floors apart!). I had to explain a bit about Hodgkin's Lymphoma, and why a full tumor was needed rather than just a needle biopsy. You'd think that research could have been done before the appointment. I was glad he gave me a lot of his time, and showed sincere concern when he realized there were no results for the biopsy in my file- and it was a week after! But that's another post...



Bone Marrow Biopsy Video and 11/1 Appointment

11/01 Mon.: I was excited to finally be going in to see Dr. Goy and get my formal diagnosis. Having been told by the previous oncologist that he was "over %98 sure" I had Hodgkin's Lymphoma again, I was expecting the same kind of treatment. The first doc had suggested it might be 4-6 months of chemo followed by a stem-cell transplant, so I was thinking I'd hear the same thing from this doctor. Adam had taken the day off to come with me, and we had our children at Danae and Jerry Fail's house.


After 1 1/2 hours of waiting, Dr. Goy walked in, asked me ten questions in one sentence about my symptoms, flipped through my binder/file, and went stalking out of the room shouting, "Guys! Guys!" It looked like something was missing from my binder? Not exactly encouraging.
It was another 40 minutes before we saw him again. Adam and I were having fun joking around while in the waiting room, trying not to think about how nervous we were. Dr. Goy came in with a couple nurses and explained that we did not know yet was I had. He explained that the results from the biopsy were inconclusive, and that all of my blood work appeared normal. The lab had run over 50 tests on my biopsied tissues and had found "similarities" with Hodgkin's Lymphoma (HL), but that it appeared more "aggressive" than traditional HL and there were some "discrepancies" in some of the tests. My heart sank. Definitely not the news we had been expecting. Dr. Goy said we'd be running another 25-50 tests on my tissues, taking some more blood work, and doing a bone-marrow biopsy that day. He was sure to point out that he didn't want to get me started on the traditional treatment for HL if I have something different. He wants to get me the right treatment for the disease that I have. Understandable, but hard to take the waiting!

Dr. Goy said he'd be gone the next week, but we'd have all the results by the 15th and I could see him then. Another two weeks?? I was not happy, and asked if he thought it was a bad idea to keep me waiting as I'd already been waiting 40 days since first going to see the general practice doctor. He reassured me that I didn't have the type of cancer that needed treatment right away... Um, how does he know, if he doesn't even know what I have!!

After the doc left I started to freak out about the bone marrow biopsy. That's what I get for reading all of these accounts online! I asked for a Valium (as I'd read someone recommend) and the nurse gave me a look. One that said she thought I was being a wimp- which I probably was, but hey, I have cancer! Can't I be allowed to be a little wimpy on occasion? :) I was annoyed with her attitude but hey, she was still getting me something. I was given a Xanax, I'd never had one before and don't think I'll ever want another! Another younger nurse came in and told me it wouldn't be that bad of an experience- so I asked her, did she know from her own first-hand experience? Unsurprisingly, she said no, so I said I wanted to slap her- jokingly of course! But I still think I embarrassed Adam. She seemed to think it was funny, as I'd intended!


It turns out the nurse was wrong about it not being that bad! I was laid on my stomach and told to clutch a pillow while the doc cleaned the area above my left butt cheek to draw from the hip bone. I was then injected with several lidocaine shots to numb the pain. According to Adam, the next step was to get down to the bone. He said there was a lot of blood- all I could feel was some pressure. Then, the really nasty part started... I thought I could feel a corkscrew digging into my back with a lot of pressure squishing me into the bed. The grinding was what did me in! The doc said, "Well, this is a very tough bone!" I had to wonder what the nurses would do if I puked all over the doctor. He proceeded to pull out the corkscrew several times (Adam filled me in that every time he pulled it out there would come blood and junk, then back in for more) until he finally broke through the bone. By now, I felt completely sick and shaky. But it wasn't over! Here's where the needle went in to draw the marrow out- I could feel the pulling sensation all down my leg. If I'd eaten anything for lunch it would have been all over that room! I have to say, my c-sections were easier to go through!

video

Afterward, to make matters worse, I went into shock! I started shaking, crying, and I was cold. It was so strange! My mind was completely rational, but I couldn't stop even though I knew it was over and that I was in no pain. To add insult to injury, when I finally felt like walking and ventured out of the room, I had 10 nurses staring at me with no compassion in their eyes. I apologized and said I was embarrassed for overreacting... No comment from those mean nurses! However, Dr. Goy was nice enough to pull me away from the nurses to reassure me for a minute.

After all of this, I had to go get my blood drawn again and wait in line to make another appointment- all with puffy eyes and still a bit shaky. Overall, not the best 5 hours I've spent at a hospital, but definitely not the worst!