Monday, March 31, 2008
Mimi & WaWa are here!
Thank you WCC!
Engrafting!
The other good news is that symptomatically I'm still breathing better each day. Tommorrow is chest xray day, so I've been working on my guided imagery picturing a much better turnout than last week.
Groundhog Day
- Alarm goes off
- Roll my achy body out of bed
- Take a shower
- Eat breakfast
- Go to clinic
- Go back to the apartment
- Sit around until dinner
- Sit around until bedtime
- Repeat
There have been a few side trips to the hospital or out driving, but it's enough to drive someone a little wacky. I still can't be around many people so even a trip to the store is out of the question. And the energy level is so low that walks around the apartment complex have become a walk up the sidewalk in front of our building and back (about 50 yards.) The weather in the past couple of days has been chilly and rainy so even my 50 yard excursion has been put on hold until it clears up a little bit.
Saturday, March 29, 2008
Jordan Lake
Saturday Clinic
We learned an interesting and somewhat annoying piece of information today during clinic. Yesterday I went into clinic at 8:45am and finally finished up at 3:30pm. Today we went in at 8:45am and were finished by 12:30pm. The difference was simply efficiency. When we walked into our room this morning, all of my "goody bags" (IV bags) were already hanging from the machine ready to go and the nurse already had my pre-meds there. I still had to wait a few minutes to get blood drawn and such so it wasn't like there wasn't some drag time...but to be finished 3 hours earlier?! The nurses are great, but I think sometimes they forget that just because we have to report to clinic everyday, that extra time in clinic doesn't make any difference. When you hear your nurse say to another nurse to meet her in the break room because someone was selling jewelry as your IV machine's piercing "completed" alarm is continually going off...the annoyance level tends to creep up.
Friday, March 28, 2008
Day +21: Friday, 3/28/08
I also found out yesterday that my left chest xray looks a little worse...however, the good news is that symptomatically I'm feeling better. I can actually sleep laying down and Jim said my breathing sounded deeper last night. The doctor explained that xrays can be a little slower to show changes so we're all crossing our fingers that my next weekly Tuesday xray will confirm that something is getting better. I say something because we still don't know exactly whether it's some sort of infection or something else. Let's just all pray for improvement or it could mean a lung biopsy...
I have daily exercises that I'm suppose to do. I'm getting better about it because it really does help me feel better to get the blood moving. The frustrating part is that simple knee lifts and arm circles (keep in mind that there are no weights involved) exhaust me like I'm spending hours in the gym!
Wednesday, March 26, 2008
Day +19: Wednesday, 3/26/08
I want to apologize for screening phone calls too. Just haven't been up to talking. Jim has been great to intercept and make the calls that need to be taking care of.
On top of things, Kylie went back to the doctor again today. She's not gaining as much as weight as she should be, but she'd also been battling reflux and spitting up quit a bit. So we decided to try baby Zantac for her...wish us luck and hopefully it will ease some of Kylie's discomfort!
Sunday, March 23, 2008
I Believe
i believe in mind over matter.
i believe in the human spirit to prevail.
i believe in miracles and blessings, both great and small.
i believe in possibilities.
i believe that hurdles in life are meant to be jumped over, not a something to stop us.
from a beautiful card from my beautiful husband.
Day +16: Sunday 3/23/08
Clinic was fast. Labs, antibiotics, then release. I had to talk the doctor into sending me with magnesium pills instead of running it thru a 3 hr IV. Anytime you can get it thru food you save yourself many hours of being hooked up to IV supplements. Here is how I have to play the numbers game when my electrolytes get low:
Potassium-bananas, baked potatoes
Magnesium-eggs, greens
Phosphorus-(believe it or not) dark sodas (my preference is Cheerwine!)
Long story short-today I am able to emotionally deal with my daughter and life again. I wrote "Heather's Daily To Do List" to strike up my motivation again:
- Phyisical exercises
- Breathing exercises
- Drink at least 64oz fluids
- Eat small meals throughout day
- Get outside for at least 15 minutes
- Bathe
- Practice at least 15 minutes of PacMan (see earlier post about guided imagery)
- List 3 good things about today
I now actually remember about the tough days from last time and I again have to find my way thru them before falling deeper. This is the point where little notes will start popping up throughout the apt to remind me what I need to take care of...me!
Day +15: Saturday 3/22/08
Friday, March 21, 2008
Day +12-14: Wed thru Fri 3/19-21-08
Shaved Head Club




Catch Up: Day +8-11: Sat thru Tues 3/15-18/08
It was a lot of just hanging out since it was over the weekend and believe it or not most doctors take the weekend off. I found out that I had to do a broncoscopy either Monday or Tuesday whenever they could get it scheduled. A broncoscopy is when they take a scope thru your mouth, down your throat, and look into you lungs for, in my case, infection or inflamation. It sounds worse than is was...I don't really remember any of it anyway. So fortunately I was able to be slid into the bronc schedule at 1pm on Monday, but it still takes several days to get all the results back. The nights are rough because my breathing is so labored and noisy. Have you ever tried sleeping straight up for an entire night? Exhaustion will let you do just about anything, but I sleep in short stints 30min-1hr at a time.
After getting very ansy to see my Kylie and of course getting out of the stuffy hospital room, I was released Tuesday afternoon. "Call us if anything comes up!"
Catch Up: Day +6: Friday 3/14/08
Friday, March 14, 2008
Day +6: Friday, 3/14/08
Day +5: Thursday, 3/13/08
Wednesday, March 12, 2008
Day +5: Wednesday, 3/12/08
Also, learned that one of the guys (Thomas) that I've met in clinic lost his hair last night. He's about 7 days ahead of me on the same regimine. Seems silly in the grand scheme of things that I was holding on to a slight hope that I wouldn't lose my hair again...shouldn't be a big deal when everything else is going so well so far, should it?!
Kylie now weighs 7lbs 1oz!!!! Big change when just 8 weeks ago she was 3lbs 11oz at her lowest weight! She's having memory flashbacks of the vaccine shots (at least that's what we're tagging it as ;) ) and will just wail out for a minute or so in the middle of nothing!
Tuesday, March 11, 2008
Day +4: Tuesday, 3/11/08
Monday, March 10, 2008
Thank you Danielle!!
Sunday, March 9, 2008
The True Me
Okay...it's time to be realistic! Fighting cancer is not a pretty battle, so I figured that it's not quite right to just have a cutsie picture of myself telling you who I am when that's not who I am right now. Let me introduce myself...I'm Heather and I've been on prednisone (steriods) since last October. Prednisone makes you gain weight and creates what is called the "moon face." Just call me the Pillsbury Dough Girl! Sometimes I feel like my cheeks are going to burst! I still have my hair, but the next week or two will be the tell-tale to see if I have to join the shaved head club...but I know some pretty cool people who are already members, so whatever will be will be!Saturday, March 8, 2008
Day +1: Saturday 3/8/08
Friday, March 7, 2008
Day 0: Friday 3/7/08
Last time around, I was exposed to the concept of guided imagery. What that means is that you picture in your mind your disease going away, the various procedures working, etc. This pulls in the concept of how important of a role the mind plays which I wholeheartedly believe. Unfortunately, my mind tended to roam instead of focus so it wasn't a technique that worked so well for me. Well, this time around I took it a little more serious...I guess. A couple of weeks ago I wanted to find an image that worked for me when it came to visualizing the donor stem cells coming into my body and doing what they need to do. Well...let's just say it wasn't good cells destroying bad cells...it was more like Pacman eating up the Ghosts and the Power Pellets. And that's what my guided imagery became...a life size game of Pacman. Hey, whatever works, huh? To add a little more humor to an intensely emotional experience, when the nurse was helping the last of the stem cells drain through the tubing into my body I immediately starting singing "When Johnny Comes Marching Home Again!"
Day -1: Thursday 3/6/08
Wednesday, March 5, 2008
Day -2: Wednesday 3/5/08
Today was the one day of the pre-transplant that added an additional different chemo. So the day was labs, fluid, new chemo, old chemo, and Campath. The new chemo's primary side effect is something called mucousitis. And yes it is as lovely as it sounds. It is basically sores in your mouth and throat. So to help prevent this, I had to suck and eat ice for 30 minutes. I guess the concept is to freeze and constrict the blood vessels in your mouth so that the chemo can't get in there and kill the mouth cells which in turn causes the mucousitis. Doesn't sound so bad, right? Not unless your teeth are extremely sensitive to the cold! I do believe that this was the most uncomfortable part yet! But it could be worse!
The old chemo and Campath went off with a hitch and another 8:30am to 4:00pm day over.
Finally, caught the immediate story up to today!
Day -3: Tuesday 3/4/08
Tuesday was the same lineup: fluids, chemo, Campath. No problems with the fluids or chemo. I had been told that "typically" Day -5 (the first day of Campath) and Day -4 (second day of Campath) are like day and night. The first day you body is exposed to Campath it kind of freaks out, but then afterwards your body recognizes it and doesn't react with as many side effects. So the Campath was pretty mellow as well. That being said that it was a "quiet" day, it only lasted from 8:30am to 4:30pm!
One quick complaint...the Hickman catheter (looks like 2 tenticles sticking out of my skin that allow injections and draws without any needle pokes that can be impossible since your veins tend to shrink and collapse easily while receiving chemo) that was placed just below my right hand collarbone doesn't allow me to sleep on my favorite side so I just can't get as comfortable as I would like and can be down right painful if I wake up and find myself on that side anyway!
"The Beginning" Day -4: Monday 3/3/08
So on Monday I had to go to the BMT (bone marrow transplant) clinic at 8am. They drew labs (layman's=took several vials of blood). Then I had to sign off on more forms that said that I was okay for Duke and the National Marrow Organization to track my health for the rest of my life (I just figure that we all need a few more Big Brothers in our lives anyway ;) ) I was hooked up to fluids for 2 hours before I could receive any of the meds. Finally, I received my pre-meds that should prevent any nausea and/or fevers then the first chemo IV infusion (or drip, for short) was hooked up. The chemo only took 30 minutes and didn't have any immediate side effects, no sweat, huh? Well, I had been forewarned about the next drug. It's a clinical trial drug that is used to minimize the risk for graft vs host disease (you've probably heard that term with organ transplants, but it also can occur with stell cell transplants.) Graft vs host can leave you on meds for the rest of your life or worse yet can be fatal (we definitely don't want that!!!) It is actually an antibody called Campath-1h (I'll explain details in a later post or this one is going to be 20 pages long!) The drip is 3 hours long! Soon after it started I got the chills...okay, not so bad, a couple layers of warm blankets cured it as well as the benedryl that they doped me up on so I crashed pretty quickly. Finally I saw the light at the end of the 3 hour tunnel...home free? Thought so until I rubbed my belly only to find out that I was covered in the "Campath Rash." Within a few minutes I was itching like crazy and then it spread to my back, arms, and scalp! That was annoying, but I got pretty nervous when my chest and breathing started to get tight...I was having a "typical" allergic reaction to the Campath. The nurse hit me up with IV hydrocortisone which fortunately relieved the rash and the tight breathing within about 15 minutes. But this also set me up for another added hour of observation before I was released to go back to our apartment. Finally after 10 1/2 hours, we were able to leave clinic at 6:30pm. Felt a little foggy in the head, but otherwise pretty darn good. The various steriods that I have been given makes me feel very unsettled, almost like being tanked up on too much caffeine so I do have to take a little magic pill each night to relax enough to go to sleep. Okay, this posting was suppose to bring you up to date (through Wednesday) but it's gotten too long in my opinion, so to make myself feel better, I'm going to start another posting for Tuesday.
Why "Borg Assimilator?"
Tuesday, March 4, 2008
Tell us what you really think, Kylie!
National Marrow Donor Program
www.marrow.org
www.marrow.org/HELP/Join_the_Donor_Registry/Myths_%26_Facts_about_Marrow_Don/index.html
Thank you Kevin McLean!
Thank you Rod McLean for passing the website address onto me as well!
For everyone else...you should know that both Kevin and I were diagnosed with Hodkin's Lymphoma Stage 2B...supposedly rare cancer but yet a small world! I also must add that this disease chose the wrong two people to attack because these two people have no intention in taking it laying down (except when the exhaustion knocks us on our butts ;) !)
Catchup Posting (originally posted 2/4/08)
I also got some great news this past week. I had a PET scan done for the first time since learnng the cancer came back. (I wasn't able to do the scan do to the risk to Kylie while she was in my tummy!) Well, my oncologist called and said that we have had an 80% reduction in the size of the noduals and lymph nodes that we saw on the CT scan that we did back in Sept! Also, we learned that the cancer hadn't spread to anywhere that we didn't see on that original CT as well! To top it off, the peson that my doctor requested to provide new stem cells to me agreed to be the donor! So as it stands right now, we will be going to Durham in the beginning of March to do the transplant. I am going to explain the WHOLE transplant process to everyone soon primarily because there are a lot of misconceptions about the process, and I hope that the explanation will potentially lead many of you to sign up to be potential donors!
Jim and I have to go to Duke tommorrow (2/5/08) for another chest CT scan because I have either an infection or inflamation in my left lung (just continue to cal me the complication queen!) We have to get it resolved before going into the transplant. We will be down there for Tue and Wed which means Kylie will be staying with Mom and The Newells (Bro Ryan, Shannon, & Jordyn.) It's quite an amazing thing to be surrounded by so many who are excited to help out where they can (have you seen Kylie's pictures? I can't imagine anyone who wouldn't want to keep her!!! ;) No biasness of course!!!)
Everyone's generously never ceases to amaze me. The offers for help continue to flow in! Jim and I's Sunday school class have worked out a schedule to provide food...I never thought finding time to fix a decent dinner would be this difficult! So thank you guys and gals so much for that! Our dear friend Betsy spent several days here with us. She works for Chili's with Jim and helped him with the opening of the new South Asheville Chili's as well as provided great companionship and helped us at home as well. Mom & Wally (new fiance!), the Newell's, and Danielle Treadway have all been saviors to us as well doing far too much to list! And I definitely want to thank all of you who have sent emails, comments, voicemails, etc with your support, offers to help, and love! One big request is that no one please get insulted or upset if I am slow to return messages. As I said, we are blessed to have so many amazing people in our lives, but it does make it difficult to keep up with email and phone. I love you all dearly and want to keep you all involved who want to be (which is a huge reason for this blog!)
Okay, I'm going to conclude this entry because I am dying to go take a picture of my phenomenal husband asleep curled up against our beautiful daughter on the air matress in our loft! I'll be sure to post the picture!






