blog schmog

Hi everyone: I'm not sure if I like blogging. I feel like I am writing to myself. But then I'll get a response from someone and think, "hey someone's reading this." Thanks everyone for your notes to let me know this is not in vain.

Well, It's been a hard week for Jim. He's very sick and tired and sore. The shot that causes his blood cell count to rise really hurts him because as the bone marrow makes new white blood cells, it causes him to ache.

I really miss Jim. Jim really misses Jim. How do people go through this year after year after year.

Yesterday, I got a knock on my door. Knock knock knock. It was a gentleman from our church. He drove all the way here from church with an Easter lily for us. How kind. The smallest things that let us know someone is thinking of us really blesses us. Thanks church. We love you.

J & G (D)

"R" word

Hi Everyone:

We are home. Jim had his third chemo treatment today and is sleeping soundly right now. And it begins. But maybe it won't be so bad this round. We thought he was dying last time he was so sick and weak.

Could be, too, that GOOD NEWS might make Jim feel better. And we do have good news. We also met with Jim's oncologist today to go over the CT scan. Here's what the last line of the CT report says under "COMPARISON": Study dated 2/5/2008. There has been a complete resolution of the previously described 5.7 cm (it was bigger before that because this was after his 1st treatment) retroperitoneal mass. The spleen has enlarged since the previous study."

Doc said for all intents and purposes, without actually saying this, Jim's cancer is probably already in remission. Jim will have to get the rest of his chemo, but will not need 8 treatments instead of 6 and is doing well. He does have a borderline sized right paratracheal lymph node that is enlarged, measuring only 10mm. That was larger in the original CT scan, too. They will do another CT scan after chemo #4. Doc isn't concerned about enlarged spleen. He doesn't know why it's enlarged, but he doesn't seem too concerned about it. But he is going to keep an eye on it. He said he wouldn't even do a CT scan after chemo #4, but is going to do so more for the spleen than the lymph nodes.

Why do I always think of questions AFTER the doc appt. My question. If you took out one of those lymph nodes and examined it, would you find cancer, or does that mean because they are normal size it doesn't exist? I guess it doesn't matter.

OH, and this is huge HUGE... The doc feels the chance of the duodenum perforating is no longer a concern. I didn't go into this too much because it was just too much to wrap my head around, but if the lymph nodes shrunk very fast (and they did) there was a chance that the hole in the duodenum would not have a chance to heal up and it could rupture, and Jim would have had to stop chemo, have a HUGE surgery, and chances are he probably would had a terrible struggle to make it through the recovery (sometimes 2 years) from a Whipple surgery, not to mention the cancer would have grown out of control....so. So, Jim's pretty much out of the woods with that one.

Thank you for your prayers. Keep praying though. We want all the LN's normal size. We want that spleen normal, and we want the next 3 treatments to go off without a hitch. Pray for protection of Jim's job, that he get back to work soon, and that has he gets off the pain pills (he's down even more now) that he does not have withdrawal symptoms.

So, we're taking the "C" word, and almost changing it to the "R" word. Can't use the word remission quite yet, but can't use the word cancer either. This is good.

I sure hope I don't have to clean up any puke.

I'm spent.
G

Answers

I have figured out the answer to a question I didn't ask. I just assumed that my lifelong struggle in the prayer department is what was causing this anguish or despair that has slowly been creeping in my heart day after day....growing, growing, growing.

But it's not. I realized that each day this week brings Jim and I closer and closer to Monday, chemo day. And I know what is awaiting him for the next 15 days. And what is awaiting me.

Knowing this, doesn't take away this deep deep sadness about Monday, but it does show me God's mercy and love.

It's amazing how quickly I jump to assuming that I am doing something wrong spiritually and therefore are paying a spiritual price for my unbelief or shallow prayer life or....__________(fill in the blank if you can relate. Why don't I just simply think this? I struggle with prayer, yes, but I have a passion for God's word and it excites me above all else. I know what it says about God's love and His character, and my flesh, so what is going on? And then line my feelings up with truth.

Oh, I always end up there. I just wish that were my starting place.

It's a tired out recovery cliche, but one that I have always loved. If God reveals it, God heals it.

Thank you God.
G & J

There again

Who can tell, by a show of hands, that I once again left my hiding place?

Gloria

Wow

I thought of updating and realized I didn't have anything to add, but then thought again. It's amazing how the definition of "better" is so relative to our circumstances. Jim's doing "better." He was able to stand and make a salad today. The rest of the day was in bed or sitting, reading. Tomorrow, he will rest all day in hopes that he will be able to sit at the Seder meal at our church. That's a whole 3 hours. I'm not mocking him or his "better," it's just that I wonder why I'm a bit down today and it dawns on me that the last few days of Jim's "better" before the next Chemo isn't really fulfilling. I'm glad for him, and I wouldn't change it for the world, but, I am tired, bored, lonely and angry that there is not one thing that I can do to change Jim's health and make him feel more "better." ...AND FOR THE LIFE OF ME, LET'S PLEASE NOT TALK ABOUT THE WEATHER IN PITTSBURGH. I am so sick of this place, as I sit here another year reading e-mails from my friend in Colorado, the land of eternal sunshine (no offense at all Rach, just sick of gray).

I got my fourth wedding shower invitation in the mail for this year and am sad that I might miss this one, too. I would actually LIKE to go....which is odd because I have about 4 to 6 a year, not counting on average 3 weddings and high school graduations. So, to be "desiring" to go to a shower...well...I must need a shrink.

I talked to a nurse at the assisted living center on Tuesday, where we pay large amounts of money for my father to live (my only day out of the week...yippee...thank goodness that my bible study preceeded it or I would really be down) and her son had same thing Jim had when he was 17. She said it never came back and he's doing good, but he still has side effects. I asked her like what and she said that he basically feels like he always has the flu. She said he sleeps alot and is tired alot. I said, "How long ago was that?" She said, "He had it when he was 17. He's 25 now." Gulp!!!

Let's see. My dad still has a very itchy rash on his legs that he got from the scabbies that he got from the assisted living center. The weekend staff didn't apply his anti-itch cream. So Monday, his legs were so itchy, he put toothpaste all over them. Tuesday, while my sister and I visited him, we walked in on him putting shampoo all over his legs. This really inflamed him, and she got him in the shower, while I ran and got his special soap. She washed him with his sock, because we couldn't find staff for a washrag. I looked for staff, picked up a bag of poopie clothes laying in the middle of his room, rearranged his furniture, again, tried to get the administration because of another medication mess-up, blah blah blah. Who knows what my poor dear dad went through today. I didn't have the heart to call and hear about it.

I guess I'm trying to explain why I'm not doing cartwheels about Jim's "better." I know that Monday (chemo) is coming, and it will start all over again, and by the time he's "better" from that my dad will have decided it's time to put the preparation H all over his legs.

Hurry....someone call the waaaaaa waaaaaaaaa waaaaambulance. Wow, I haven't used that one in a long time.

Gloria

CT Scan

Jim had a CT Scan today. This will tell us how well his first 2 chemo treatments went. The Doc said the results of this CT scan can tell us a lot about Jim's prognosis, so we sit and wait until next Monday when the Doc tells us if the Lymph Nodes shrunk. We were scared yesterday about this, but we're okay today.

We think it's going well because Jim was actually able to lay on the CT table without pain and without a shot of dilauded, something that he has not been able to do for months.

And we went to church yesterday and he did fairly well there, too. BTW. We love you North Park Church. Oh, I have to have a whole separate post on our brothers and sisters at NPC. You amaze us!!! And we're not easily amazed.

J & G

Tears

Jim cried yesterday for himself. It was only for a few minutes, but it was very sad. Wow, has God blessed Jim. And me, too. For 9 months this husband of mine has been in pain. In the past 3 months, he's been in the hospital 5 times for over 50 days. He must have had over 200 needles, IV, blood test, etc. pricks. He can't read for many reasons. He watches little TV, for many reasons. He is saddened that he can't cook for his men's breakfast this year like he wanted. He misses his men's group on Sunday and Wednesdays. He hasn't been able to get to church. He misses talking to the guys. He's been nauseous every day for months. His hair is gone. His strength is gone. He hasn't been to work for months, and disability ends soon. He wonders if his employer will even want him back, or at the very least will he still be valuable to them. And this was his first tear of self pity? Wow. What an example to me, gulp. It's not because he doesn't allow himself to feel his feelings. He just chooses which ones are good for him and which ones aren't. How caring of God to take the discipline he developed in Jim's character early in the year on a whole different issue, and enable Jim to make mature choices on other pressing things in his life.

And yet in a weak moment, Jim hurt. And in true Jim style, one of the things that made him the saddest was that he wasn't strong enough to do things for me or with me.

My husband humbles me.
Gloria

PS Don't worry Jumbo-baby, you'll have ample opportunity when you're well. I'm making a longggggggg list. ;) When this is over, you'll owe me big. BIG!!!

Whew!!!

Glad that's over. That was a short one. Has someone out there been praying? My tendency is to run in the opposite direction when despairing. HE came and brought me back.

When I'm sick, maybe I think too much. Of the past. Of the future. Of all the changes. I have to remember that without change, we wouldn't have butterflies.

Jim is over the chemo hump. A little less nauseous, a little more stronger. Now, to get him a bit stronger for round 3. He lost 10 pounds in 1 week. Must have been those 2 walks to the mailbox. LOL. Oh, I crack myself up.

Us in Him
Gloria and Jim

(Hey, that rhymes)

Depression

"It" came like a thief in the night. Quietly. Walking gingerly, so it could pounce on the victim without her knowing. But "it" didn't come to take, but to give, and "it" gave greatly...generously. "It" had been saving up for months and months.

the "It" is depression. And while it arrived quietly, it has hit me like a Mack Truck. I am extremely sad. Extremely.

Gloria (Dolly)

Chemo

Hi Everyone:

Well, Jim had his second dose of chemotherapy on Monday. He receives chemo every 21 days. 2 down, 4 to go.

BAD NEWS FIRST:

Physically it's very difficult for Jim right now. After his first dose of chemo, his white blood cell count dipped very low. This leaves him vulnerable to infection and weakness. Doctors have put him on a medicine called Neulasta to help his body create white blood cells, so this helps. He also struggles SEVERLY with nausea. No medicines are helping. On Tuesday, when I took him to AGH for his Neulasta injection, I stood in the lobby with him, while he was vomiting in the garbage can in the lobby. There is just no stopping the nausea. We have tried 3 medicines so far. The nurse tells him the bed is not his friend. But between the nausea, weakness and pain, he is in bed far too much, and he continues to get weaker. He has lost a lot of muscle tone. He's lost weight, too, despite his face being puffy from the high dose of prednisone. Please pray that his nausea goes away. Tomorrow will be 1 week. I need to get him healthy for his next dose. That gives me 2 weeks. I don't know what to do with him. Pray.

Also, continue to pray that his duodenum does not perforate, which would cause major problems. Too much to go into.

GOOD NEWS LAST:

We love Jesus.

His PET scan was taken after his first dose of chemo. Despite a few lymph nodes actually getting a bit bigger compared to a CT scan taken 2 weeks prior, the mass of lymph nodes that is causing the pain, and actually grew into his duodenum has gotten smaller. The chemo is working... AND.....drum roll......Jim had gone down from 60 mgs of oxycontin every 8 hours to 40mgs of oxycontin every 8 hours, and now for 2 days in a row, he's taken only 20 mgs every 8 hours. YIPPIE. He's still feeling a little pain, but would rather that than be on the higher doses of meds. The "nausea" is stealing "less pain's" thunder, but hopefully, we will win that war, too.

MORE GOOD NEWS:

ATTENTION BALDAUFF MEN...If you have ever gone hunting in Cherry Grove (all 23 of you) AND...if you have ever arm wrested "Dad" "Uncle Jimmy" "Brother" and LOST (all 23 of you), there is good news. Jim informs me that he could still win at arm wrestling...against me. Line up guys. Now is your chance. :-P~~~~~~~~~~~~

Also, Baldauff men. (You too, Pastor Dave, since you like to fish) Jim will need your help getting "helgies" this summer. We know a great place where you can get 25 hellgramites per net and you can't stop catching the smallies. And it's where John caught the 30" walleye. So, hope to see you this summer up the cottage.

MORE GOOD NEWS:

I actually like his bald head. I love to rub it and kiss it. I think it's very sexy on him. (I can say that on the WWW, can't I?) ;-)

LAST BUT NOT LEAST:

My saliva gland is infected again. AND I'm either getting a cold or the flu. PLEASE PRAY FOR JIM'S PROTECTION FROM ME. Him getting sick would be disasterous right now. There will be NO kissing of the head for a while. So, pray for me, too.

If indeed Jim only needs 6 cycles of chemo rather than 8, and everything goes as planned, he will be done Memorial Day. Poetic, isn't it?

PS: I promise smaller posts. I'm just playing catch up.

Welcome to our Blog:

Do you see the name of it? Not the title above, but the www. name? Jim's Jubilant Journey. I named it this because even though Jim has cancer, we still have great joy, we are rejoicing, are exultant and will triumph....come what may. (although this past week with me being sick, other names came to mind...ahem)

HOWEVER while working on this, Jim walks in, sees the name and says, "Jim's Jubilant Journey, what the crap? Come on Hon." (eyes rolling, laughing on the inside)

(Well...I thought it was catchy...Perhaps the past 9 months are getting to me??? And since it's taken me 3 days to get this far, he's nuts if he thinks I'm changing it. I guess it is lame. No, it's lame. No guessing about it. ) Wow. IT'S REALLY LAME...

So, I ask him, Hon, what would you call it?

His answer... "How about, 'Jim's Cancer Blog.' " We won't quit our day jobs. :)

I've created this blog so that I can update everyone on Jim's condition because everyone keeps asking, and I can't seem to keep up. You're welcome to post, call and visit, but I know I'm not doing well keeping everyone informed, so I hope this helps you. I hope it helps me, too.

Before I end this "welcome" I want to thank many of you readers who have blessed us so much. We have been overwhelmed with God's love through you. Your cards, e-mails, gifts, meals, stews, vitamins, car batteries, errands, visits, prayers, cleaning, mattress moving, taking out my garbage, visiting, phone calls, tire fixing, funny videos and cds and offers of anything else in the world have been such a blessing to us, we will never forget it. It has changed us. Thank you.
In His care
Jim and Gloria

Prior to March

Here is somewhat of a history of how Jim arrived at where he is today. (if memory serves me correctly)

July 2007 - Jim's pain in the back and groin for the past 2 months lands him in the hospital. CT scan shows swollen lymph nodes (LN). Oncologist gets involved. Doc recommends biopsy.

August 2007 - Endoscopic biopsy. Results are in. In a nut shell, they say it is not cancer, however there are 2 cells unidentifiable, possibly metastatic cells???? Doc says, let's just watch it, and do another CT scan in October.

October 2007 - Doc says CT scan in October shows LNs are "possibly" the same size, maybe a bit bigger. He thinks an open biopsy would give him a better idea, but risky, cause it's so close to his vertebrae. Jim still in pain. Pain pills help a tiny bit. Some anti-inflammatories help, so Doc says to sit and watch.

November 2007 - Pain is extreme. Jim in the hospital again. LNs are larger. Oncologist wants to do another biopsy. He will try laparoscopy. If he can't reach the LNs, he'll open him up. Laparoscopy worked, biopsy taken. Some adhesions removed from Jim's old scar. Fibrous in nature. They can't get Jim's pain down for anything. Jim's put on pain pump and in hospital 17 days. Doctor says if it's cancer, it's bad because of the pain. Biopsy comes back....NO Cancer. Yippee. But what is this intense pain? And why are the LNs swollen?

December 2007 - Jim's home 9 days, makes it through Christmas Eve. Christmas was filled with horrific pain. He goes back into the hospital for pain management the following day. His blood numbers and inflammations rates are extremely high still. Doctors diagnose him with an extremely rare disease. Retroperitoneal Fibrosis. Jim's on tons of pain killers, high doses of prednisone other meds and he's sent home 9 days later. This disease is so rare, there's no info. I did find a great site on Yahoo, and began to unravel this disease. But why the swollen LNs? Nobody with this disease has them?

January 2008 - He had blood in his stool. A colonoscopy and endoscopy is ordered. During the endoscopy, the doctor sees blood flash across the screen (thank you Lord). He goes deeper, sees a mass on the duodenum and takes a biopsy. Jim's admitted to hospital again, with an enteroscopy ordered for the following day. Another biopsy is taken. 10 mins after that biopsy is taken, the biopsy from the day before comes back. We're told that Jim has duodenal cancer, and it's not good. Kids come in from Ohio. Things look grim. They talk about Whipple surgery. Don't ask. You don't want to know. Prognosis, not good. But the next day we are told they're not sure what kind of cancer it is. Thanks guys. Jim sent home to await biopsy details. We pray that his duodenum does not perforate.

February 2008 - Pain too severe. Oxycontin, pain patch, etc. Nothing works. Jim is back in the hospital. White blood cell count continues to drop. He continues to bleed through the duodenum.

February 5, 2008 - After 16 days, biopsy has finally come back. Jim has Non-hodgkins Lymphoma. Much better than duodenal cancer. However, not sure if it's T-cell or B-cell. Doesn't matter. Time for Chemo.

In one day Jim gets

• a Muga scan to check his heart.
• a port installed under his skin, into a main artery for chemo.
• a bone marrow biopsy (very painful)
• 3 units of blood
• his first does of Chemo

February 10, 2008 - Jim's home. And it's my birthday. It was actually a great day.

There are actually tons of things have left out that made life really hard: things like my dad was admitted into the hospital about 4 times throughout all of this. Jim's integrity was questioned twice during hospital stays because of the oxycontin. Me driving to 3 hospitals for CD scans, medical records, biopsy slides, to send to a doctor at John Hopkins for the Retroperitoneal Fibrosis that he doesn't have, doctor visits galore for the Retroperitoneal Fibrosis. Records and biopsy slides send to John Hopkins lost, records found, and it goes on and on. But we are thankful finally there is a diagnosis and we are on working on fixing it.