Wednesday, February 28, 2007

+43

Update from the hospital. Louise and I had to rush up today for a sonogram of my abdomen. The CT found gallstones and my doctors wanted to see if they were obstructing anything. They are not. During the ultrasound they also checked out my liver and kidneys for inflammation and they checked out just fine. To control the gallstone pain my docs put me on a low fat diet. Good news is she said I can go off the low sodium diet. I don't know which is worse - I love fatty ice cream. Oh well another diet to follow. I am just happy to be off the all liquid diet and eating real food again.

My counts are looking good - up from yesterday. Thank god since they are threatening to give me a shot to boost my system.

Louise and I were then shuffled off to the ENT to check out my ears. The ENT said they look just fine and there is no infection. More good news.

We left before my chemistry counts came back to see what is up with the liver for today. However I think I was poked and prodded enough for one day to get the hell out of dodge. I don't have to return until Friday.

If your wondering about next steps we have been getting some insight. Once my nutrophils are in the 1000's (right now they are only 500) I get discharged from the in-patient out-patient center to the strictly out-patient center. I get monitored there weekly but I don't know how long; haven't gotten that far yet. Another milestone is my 60 day work up when they do a CT to measure my mass. That is only a couple weeks away amazingly. I also start radiation in a couple weeks.

Oddly enough all this commotion is coming exactly 1 year from my initial diagnosis and treatments. Dave and I have decided to celebrate this coming March and not begrudge it. We will celebrate that I have fought this cancer for 1 year, had an amazing baby boy, and I am still alive and kicking. I see myself with many more March's to celebrate.

Tuesday, February 27, 2007

Day +42

I still have some abdominal pain and bad nausea. Today they took a stool sample (feel like the dog) and did a CT of my abdomen. My doctors think it might be the ear infection that is dragging me down so tomorrow I will have to go back up to the hospital to see the ENT.

They are keeping me on my clear liquid diet until they can figure out what is going on. This by far is the crappiest weight loss plan.

My liver counts look great but my other counts dropped a bit. Hopefully tomorrow will bring some answers from all the tests and appointments. I must admit my doctors are totally thorough so if there is something to find they will find it.

I will post tomorrow with any news.

Monday, February 26, 2007

Day +41

The good news is my counts are still all moving in the right direction. My liver functions are the same or down a tiny bit and my other counts are moving up.

Bad news is I have some pretty bad abdominal pain and I was sick today. My doctor put me on a clear liquid only diet and I am due back tomorrow to see if it has subsided. I got a little carried away on Saturday and attempted to eat like a normal person so I think my stomach is revolting. As long as it isn't my liver acting up I am a happy camper.

I still have an ear infection and my pneumonia. I am hoping I can clear all these infections up soon so my counts come back and a little thing like eating doesn't cause such problems.

Will update tomorrow and let you know if anything new comes from the hospital visit.

Friday, February 23, 2007

Day +38

My platelets are coming back! I went to the hospital today convinced that I would need a transfusion but my platelets surprised me and they are headed back up not down! Same with my white and red count. My neutrophils are still in the tank because of the infection but once it clears they should come back like gang busters.

My liver functions are holding steady. Two were slightly up and I am recommitted to my no salt kick. I swear I had some of mom's cookies and I can just taste the salt....wonder if that didn't help the situation.

My weight also held for 2 days. Not everyone knows but I have been dropping weight like crazy. So 2 whole days of holding weight and not dropping is great.

So I am a free lady again this weekend. I will enjoy the time with the kids and Dave. I will post again Monday. Have a great weekend.

Thursday, February 22, 2007

Day +37

Nothing new to report. I was off the job today and enjoyed the break. I took a walk, read, relaxed, and made some dinner.

Back to the hospital tomorrow for what has the potential to be a long day. They anticipate I will need a platelet transfusion which always takes about 2 hours. Amazingly my platelets have held for about 1 1/2 weeks. While I was in the hospital I had to get a transfusion daily. So this is all good news.

I will post any updates tomorrow.

Wednesday, February 21, 2007

Day + 36

Update first. My liver functions are still coming down (good thing) and I only have those 2 pesky functions that need to enter normal range. My other counts are holding steady. Nothing impressive but I didn't need platelets again today so good news! I need all my whites, reds, and platelets to come way up but in time. I get tomorrow away from the joint and then back again on Friday. I am hoping they will load me up Friday and send me home for the weekend. If I only have to do 3 days a week wouldn't that be spectacular!

I also got my radiation appointment set for 2 weeks from now. I am keeping the momentum going and not letting up on this cancer for one second. Next I will zap it with radiation and kick it into remission once and for all.

For those of you who don't know my family is littered with cancer survivors and a couple that didn't win the fight. My mom, aunts, uncle, grandfathers....they all inspire me to keep moving forward. The survivors give me the knowledge that I will definitely beat this cancer - my mom, aunt and uncle did - why can't I?! The ones we have lost I feel are with me encouraging me that this is not my time, not yet; I have too many babies to leave my mark on. My sister and I talk about this stuff frequently and she is such a good counselor for me. Nothing like sisters to get you through tough times.

Dave and I were talking about the months ahead. After radiation, headed into the summer, maybe I could actually return to work and pay back all these folks that keep donating me leave. Payback my wonderful office for being so understanding during all this treatment. I have to say I must have the most understanding director in the entire world. The entire Baldrige staff, my sisters colleagues, people I don't even know in Oregon, mom's friends....you have all shown me such support I can never fully repay you. Dave and I are truly thankful for all the donated leave. It has supported our family this entire time and we estimate will keep us going until March. THANK YOU!!!!!!

I just can't thank everyone enough. What a fabulous day - I love racking up these good days 1 day at a time.

Tuesday, February 20, 2007

Day + 35

I have had a good day off from the hospital. I spent it resting, taking a walk, working on a baby blankie for Alex, and puttering around the house.

I don't know if you all follow Alese Coco's site that I have marked on my page but if not it's a heart wrenching story. Her family has sent out an urgent request for prayer to get her through a very rough time today. If you have the time, look at her site and add her to your thoughts and prayers. She is in mine always - I just pray that she gets a break sometime soon.

I have been on the web community alot today and just marvel at what everyone else has been through, is going through, and amazed that they are so strong! It gives me such inspiration that I too will get better and beat this disease.

It's good to reach out of my little shell sometimes and draw upon the strength of others that have forged ahead of me with this disease. Those that are going through treatments as I speak and those that have kicked their cancer into remission.

Thanks to everyone for their support. I feel it around me always.

Monday, February 19, 2007

Day +34

GREAT news today! Well some mixed bag news but still great news.

I had a CT to check on my phenomia. It is still there and my docs are putting me on a new antibiotic to clear it up. I also have the beginnings of an ear infection which the new drugs should kick as well. I managed to bang my right ankle and have some nasty big bruise that is puffy....didn't even know about it until they found it today. Gotta love how thorough these folks are. Finally the GREAT news the scan they did to check the lungs of course ran over the cancer mass....and they report there is shrinkage in my mass. This is amazing! It still is too soon to be even scanning me for this stuff so it's like an extra special side note that it happened today. Other great news....it looks like insurance will pay for radiation treatments are Hopkins! Almost 99% but won't commit until I have that lovely approval letter in the mail.

More good news. My liver functions are all down (the direction they need to be going) and I am operating on a normal level for all but 2 specific functions. I have dropped more weight than I think I gained at this point and my docs are taking me off my diuretic meds.

I ate a meal yesterday (thanks Mom) which is news in itself these days. I don't think I have had a real meal in weeks. I think slowly my appetite might bounce back. I am still on orders for a low sodium diet. In all reality I think I am never going back to the normal sodium level. As I told my uncle Keith today....if I have to give up salt forever to be in good health than goodbye salt shaker. No sweat off my back.

My other counts dropped (they need to go up) but they think it's the phenomia holding up their rebound and this new drug should help. Amazingly I have held onto my last platelet transfusion for about a week. As a reference I was getting them daily in the hospital so this is good for me.

Also some possible spectacular news! I have this rash spreading all over my belly, legs, and arms. Sounds weird but it is somewhat possible that it could be Graft Vs. Host Disease (GVHD). This is something that happens to true bone marrow transplant patients and it is a good thing; a sign that the new immune system is taking hold. It is rare in auto transplant patients (what I had) - about 20% chance. But we know my odds; I am always on the rare end. Overall what this could mean is that my immune system is really kicking butt and hopefully killing this cancer big time. My docs are still not positive so don't get your hopes up just yet.

My hopes are sky high and Dave is worried but I just can't help myself. I needed some good news and today we got some. Even if I don't have the GVHD my mass shrunk! It shows shrinkage on a CT scan something I have NEVER gotten. They have only seen reduced activity on PET scans never shrinkage on the CT. I am giddy that this crap is working once and for all. I believe that 2007 has to be my year, my time has to have come, these prayers around the world are working, I am gonna beat this stupid cancer.

I often pray just for the strength to get through the day and it's like god has given me some sign that I do have the strength, he is walking beside me, and this is going to come to an end one day.

Well I get a day off from the joint tomorrow (sigh) and then back again on Wednesday. Of course it means laying low, no fevers, and steering clear of the sick kidos but I can do that to stay out of the joint.

Sunday, February 18, 2007

Comments - thanks!

I went back through and re-read all the comments everyone has posted these past weeks. I am constantly amazed at all the support my friends, family, and even complete strangers show me and my family daily. Yes, I really read everything posted, my soul feeds off the positive words, energy, and prayers everyone sends my way.

Thanks so much!

Heather

Day +33

My gosh how the days just keep adding up and how I await some good counts. I have most definately enjoyed my weekend away from the joint. Nothing better than some freedom to refresh my soul. The kids are home from Granny & Grandads's and I got to play with them, read to them, eat with them...it is amazing how the most simplistic things in this world give me so much joy. I just love being their mother, providing for them, and nurturing them.

I have been on an emotional roller coaster since I have arrived home. I guess I over simplified how easy or shall I say how hard coming home would be. It is great to be home but it is also a reminder of what I have at stake in all this treatment mess. It is a reminder of how sick I am when I can't provide for my own family. The hospital was kind of a coccoon from all of those reminders. Weird.

However after some good long talks with Dave, Mom, Michele, and Dad I am back to living in the moment; just for the day. It is what god tries to teach all of us and I must say it is the most difficult lesson in the world. So today is a great day. I am alive, I am home, I am beating this f*&ck*&* cancer, I got to be with my kids, be with Dave, and mom is coming over with dinner tonight. Also some great advice from Dad - get off my butt, out of this house, and get some fresh air. I have been doing just that and it is doing wonders for my spirit. Nothing worse than sitting around a house getting depressed.

As for my physical state I have no idea what my counts are but I feel good. I am getting thin since eating is a big old pain in the butt. Nothing tastes right, I am on a low sodium diet (Aunt Linda I need recipes), and wichever way my digetstive system is running (or not running) it's tricky eating. Waffels have seemed to be a big winner this weekend.

Tommorow brings a cat scan and day at the hospital but I am up for it. It's a good day!

Saturday, February 17, 2007

A Message From Africa

Forrest Metz sends this message to Heather and to the sky above from Luanda, Angola. To this I add a prayer by Rabindranath Tagore. Keep Fighting Heather!

Let me not pray to be sheltered from dangers,
But to be fearless in facing them.

Let me not beg for the stilling of my pain,
But for the heart to conquer it.

Let me not look for allies in life’s battle-field,
But to my own strength.

Let me not crave in anxious fear to be saved,
But hope for the patience to win my freedom.

Grant me that I may not be a coward, feeling your mercy in my success alone;
But let me find the grasp of your hand in my failure.

Amen.

Friday, February 16, 2007

Day +31

Today Louise took me up to the hospital for a check up. My counts are still holding steady so I was given the weekend off! No treking back and forth to Baltimore for one weekend. Dave's parents are taking the kids tonight so Dave can get a sound nights sleep and not have any hassels in the morning. They are the best grandparents/in laws I could have ever have.

So I will enjoy the weekend and take a break from the awful hospital.

Thursday, February 15, 2007

Day +30

Another long day at HIPOP but another day at home and not in the hospital. My counts are doing well - holding steady. My VOD is still on the decline and it is very rare that it would come back.

My sister Denise is in town this week helping out and this ends the assistance from family members. Dave and I found 2 people to help out in the mornings with the kids and one girl will do some eveings as well.

Hopefully the kids will adjust to yet another change in the routine.

I am feeling okay but worn out. Dave is taking great care of all of us. If anyone wants to pitch in this weekend and give him a hand with the kids he would probably love some time off.

My sister in law made a t shirt and other stuff to support me and the hodgkins cure. Following is the link:

http://www.cafepress.com/heathersteam

Wednesday, February 14, 2007

Day 29

Heather and I are sitting in "HIPOP", which is the out-patient center that she must visit daily. The good news is that this means she is out! Heather caught us all off guard yesterday when she announced her release. I picked her up around 6:00 PM (well, I got there at 2:00....but they are never on time).

The statistics are that her liver function has improved considerably and her abdomen has shrunk; meaning the VOD looks (to the layman) to be on the mend. Her white counts are up today, but they flucuate, and she is getting ready to recieve platelates (which are really low).

We are are happy to have her home, the kids and Maple reacted as you would expect. She is still really tired, and I am being a "quarantine nazi" with regard to even her time spent outside her room. Still it is great to have her back, a great Valentines Day present.

Dave

Monday, February 12, 2007

Day + 27

Hi all,

I am back to posting for myself. Let me just tell you the pain associated with VOD sucks.

My counts continue to do what they are supposed to do - I know have about 10 things I track.

The doctors think I might get home on Wednesday or Thursday. I don't get overly optimistic since I can just end up back here at any moments notice.

Today is my sisters birthday! And in a couple of days it's valentines day. Busy week.

Heather

Saturday, February 10, 2007

Alexander


Just a quick picture Louise took of Alex last week. He is a big 5 months old.


Friday, February 9, 2007

Day 24

Hello Everyone,

Michele again. I just got off the phone with Heather and she asked me to write an update. I know that we all want to hear from her directly. Heather says she will post on Monday.

Today was/is a good day. Heather's liver function counts continue to drop and she continues to lose fluid weight. To give you an idea of what can happen in terms of fluid retention in a situation like this - Heather's waist measurement was 44 inches yesterday. For those of you who know Heather - normally the owner of a svelte physique - this is rather shocking. Today her waist measurement was 41 inches (a good sign that her liver is starting to work again). Inside, her liver has swollen to twice its normal size and is being pressed upon by all of the fluid she is retaining. The short story - pain. To better manage the pain, she has switched off of morphine - which in Heathers words "sucked" and had no effect in easing the pain - to an even stronger drug called delada (phonetically spelled), which is working well so far and does not have any delusional side effects. (Today we had a few laughs going over the things she had said while under the influence of the first pain medication - none of which she remembers.)

Heather mentioned the meeting with the radio oncologist briefly in the last post. The summary of this meeting is that Heather will most likely start radiation 9-10 weeks from Day 1 (meaning sometime around March 20-27). A week prior to that she will have a CAT and perhaps PET scan. The radio oncologist want to make sure that she has flushed as many of the toxins from the chemo from her system as possible before starting. She will have at least 20 treatments, and perhaps more based on how these treatments work. When it comes to performing radiation, it seems that with a media-stinal mass as large as Heather's, that is so close to other organs/body parts, the radiation becomes as much an art as it is a science.

In closing for today, Heather will be in the hospital for another week. She has read all of your posts (a few times over) and as a result we talked a lot today about the amazing power of prayer and positive thinking. Heather sends her deepest thanks!

Michele

P.S. (And only in this crazy situation is this a post-script... Heather still has the pneumonia that brought her back into the hospital in the first place. The doctors and nurses say it is under control, her fevers are gone, the white counts are up, and the medication will wipe what is left of the pneumonia out. Another one bites the dust...)

Sister posting again

UPDATE HERE!!I just spoke to my mother (who is at the hospital) and would like to pass along Heather's latest news for today (in case she will not have a chance to do so herself). In the past twenty-four hours, Heather's problems with her liver have begun to stabilize and she has stopped gaining water weight. If her symptoms continue to level off, the doctors anticipate that her VOD will be "moderate". Relatively speaking, this is good news. The not-so-good news is that the pain has increased and she has graduated to morphine to manage the pain. According to my Mom, the morphine leaves Heather more coherent than before.Despite these problems with the liver, the doctors want to avoid delaying radiation. Heather will meet with her radiation oncologist later today to discuss the next steps on this front.I just have to exclaim that my sister is truly a fighter and I am prouder of her than I have ever been in my life! I know I speak for Heather when I say, once again, thank you all for the support. Life is a team sport and Heather has a great team.Michele

I posted my sisters comments from the comment posting field. I am still out of it and need her or others to post for me if they want updates daily. Only difference from what she said above is we did meet with the radiation oncologist - my mom took notes since I was in a lot of pain at the time. I have graduated from Morphine to whatever the next drug is called and it is working better.

HZ
February 8, 2007 10:22 AM

Wednesday, February 7, 2007

what day is is?

I know the date is Feb. 7 but what day post transplant I can't tell you. It is very difficult to type due to the med or pain. My sister posed a good post in the comments filed that I am including now with my add -in.

Hello Everyone, This is Heather's sister again. I know that silence may be frightening, so I will provide an update here in the comments section (I do not have the ability to post to the main page). Since Heather has returned to the hospital (with pneumonia), she has also contracted a liver disease called "VOD". This disease is related to the high volume of chemotherapy that Heather has taken over the entire course of her struggle. Somewhere between 5-10% of all transplant patients experience this side effect and the physicians say it is serious. VOD can be mild, moderate, or severe. We do not yet know where Heather's case falls along this spectrum. As of today still don't know. We have reason to believe, though, that her outlook may be optimistic because her white blood cell counts have risen in the past few days and her body is working to fight the VOD. Heather is not writing because she is in a lot of pain and often heavily medicated. My nurse and I have been trying to work out the melds so I am not totally knocked out but not sitting around in pain. Because her liver is malfunctioning, she is not processing nutrients properly and is retaining large volumes of fluid. This fluid is pressing on her digestive organs and lungs - no real lung pain just my liver and causing the pain. Unfortunately it seems that even if she is able to adequately fight off the liver disease, these effects (the painful effects of the excess fluid) will last weeks if not months.

My body is responding slowley of course They guesstimate next Thursday next Thursday I can come home. Heather drifts in and out of lucidity due to the pain medication. Yep I drift in and out lucidity. Dave and I have had some weird conversations when he comes to visit. The last and my most favourite side effect weightgain! Essentially I am limited on how much I drink because my liver doesn't understand how to flush it right now. I take diuretics that donesn't work well. I pretty much dropped about 10 lbs during my last stay just to return and add on another 20. Until the VOD is undercontrol the weight will continue to rise. It's amazing how much fluid you can retain since I am well aware of what I been eating. Pretty much nothing since it's hospital food.

So with this liver dysfunction you get pain and weight gain; of good!

During the more sober moments of our conversations I always tell her how many people have visited her blog, who has sent their prayers, and how many people are on "Team Heather". She is always surprised and happy to hear how many people are cheering her on, so please keep your positive thoughts coming! Thank you and God bless! Michele

Friday, February 2, 2007

Day 15-17

I was released from the hospital. I came down with a high fever and let me stay home with these cool eclipse balls to dispense antibiotics. Went back up to get checked and they did everything possible so i could go home again. Unfortunately last night I spiked another high temp and I am back in the hospital. I pneumonia, abnormal liver functions, and low blood pressure. They are keeping a close eye on me and hopefully I can kick these fevers soon.


All for now I am just to week to type.