I begged and pleaded with Dan to write this blog post, but he kept saying no or insisted on waiting until tomorrow to do it. So, naturally, I gave in, and you have to read my words again.
(He did, however, title this one. A checkpoint in a video game is where you reach a certain level in the game and are "safe" from losing all the work you have put it. Dan says that he feels like this is where we are in the "game".)
After working ourselves up to get bad news or ambiguous news again, we ended receiving rather good news from the oncologist. To sum it up, there was no evidence of new disease on the scan. There were some things that the doctor will need to keep monitoring.
The CT scan showed several things:
1. The liver abscess from last year FINALLY resolved.
2. No new lesions or malignant spots.
3. No more enlarged lymph nodes above the lungs.
4. No nodules in the lungs (this was a questionable finding from the last CT)
5. Possible colitis (infection of the colon)--Dan hasn't had any symptoms of this but we have to keep watching out to make sure nothing is going on in there.
6. Diverticulosis--no sesame seeds or popcorn for a while :(
7. Haziness around the old ablation site on the liver and around the pancreas (the radiologist called it "misty mesentery")--probably from the colitis, but not malignant
8. Mildly enlarged lymph nodes around the pancreas (same from last time)
9. Portal hypertension and an enlarged spleen--these things could be causing Dan's low blood counts but are not new findings
(I know we've never listed out findings before, but with medical people reading these updates, it's easier to just answer the questions before they're asked!)
The plan for now is to check in with another CT in 3 months. Dan's blood counts remain on the low side, but a touch better. If the low counts persist, there is a chance of a bone marrow biopsy in the future. The doctor doesn't think he'll need immune-booster (Leukine) shots on a frequent basis, but we'll have to be on the look out for signs of infection. Accordingly, if you are sick and feel like hanging out with Dan...please don't! We would love to see you, but will love it more when you're healthy.
So, now we enter another "wait and see" time. In the future, when the 3 month scans show that there is no growth or bad changes, the oncologist may be confident to allow Dan 6 months between scans. For now, though, we are just hoping for a peaceful and calm 3 months!
Thank you for the prayers. God hears every one of them. Dan continues to say that he feels like God isn't done with him. Personally, I hope the LORD wants to keep using Dan in the land of the living for many many many decades!
Loving each other while standing on the Rock!
Wednesday, July 18, 2012
Dayenu
It will make my Jewish-mama proud that this blog post has a Hebrew title. For the non-Hebrew people reading, the word "dayenu" is part of the Passover tradition that recalls all that Yahweh has done for His people. As the miracles are recounted, the tradition is to proclaim "dayenu!"--or "it would have been enough for us." For some reason this word has been very prevalent in my prayers today.
Today is a bit of a loaded day. My brother turns 22 years old. I am finishing up preparations for my work evaluation after 2 rather exhausting years of being an RN. We found out this morning at the doctor's office that this is another non-baby month. And, finally, we have an appointment with the oncologist to discuss results of more labs and Dan's most recent CT.
I am stressed and more ready to curl in a ball and watch Harry Potter all day than leave the house to go to another doctor appointment. Even Dan is tired of the day already!
However, in the spirit of "dayenu", I have to try to force myself to look at why our lives right now, as they are, would be blessings enough.
1. My brother was given 6 months to live at 12 years old. Thus, turning 22 is a BIG DEAL. Dayenu.
2. There were barely any jobs available when I graduated from nursing school. I have had a job in which I have gained much experience (good and bad) for 2 whole years. This job has provided us with excellent health insurance. I love the staff I work with--making bad days easier to manage. Dayenu.
3. We are able to afford fertility treatments and testing. The specialist is confident we can have kids. It is taking longer than we would like to get pregnant, but we have the ability to keep trying. Dayenu.
4. Dan has survived over 5 years since his terminal cancer diagnosis. He is able to walk and work and enjoy life. He was able to get married and make plans and be a walking testimony. Dayenu.
5. We are saved by the blood of the Lamb, washed clean of our sins and trusting in Jesus for our assured salvation. Dayenu.
I am struggling to proclaim my "dayenu" truths more than I cry out my fears. My gut-feeling and pessimistic nature are telling me we won't like the news we get this afternoon. My husband and his optimistic nature are telling me that we have no idea which way the news will go--and it could be good!
Regardless of what we think or feel, the reality is that God knows and is holding us firmly through the good and the bad. I think that calls for another "Dayenu!"
Today is a bit of a loaded day. My brother turns 22 years old. I am finishing up preparations for my work evaluation after 2 rather exhausting years of being an RN. We found out this morning at the doctor's office that this is another non-baby month. And, finally, we have an appointment with the oncologist to discuss results of more labs and Dan's most recent CT.
I am stressed and more ready to curl in a ball and watch Harry Potter all day than leave the house to go to another doctor appointment. Even Dan is tired of the day already!
However, in the spirit of "dayenu", I have to try to force myself to look at why our lives right now, as they are, would be blessings enough.
1. My brother was given 6 months to live at 12 years old. Thus, turning 22 is a BIG DEAL. Dayenu.
2. There were barely any jobs available when I graduated from nursing school. I have had a job in which I have gained much experience (good and bad) for 2 whole years. This job has provided us with excellent health insurance. I love the staff I work with--making bad days easier to manage. Dayenu.
3. We are able to afford fertility treatments and testing. The specialist is confident we can have kids. It is taking longer than we would like to get pregnant, but we have the ability to keep trying. Dayenu.
4. Dan has survived over 5 years since his terminal cancer diagnosis. He is able to walk and work and enjoy life. He was able to get married and make plans and be a walking testimony. Dayenu.
5. We are saved by the blood of the Lamb, washed clean of our sins and trusting in Jesus for our assured salvation. Dayenu.
I am struggling to proclaim my "dayenu" truths more than I cry out my fears. My gut-feeling and pessimistic nature are telling me we won't like the news we get this afternoon. My husband and his optimistic nature are telling me that we have no idea which way the news will go--and it could be good!
Regardless of what we think or feel, the reality is that God knows and is holding us firmly through the good and the bad. I think that calls for another "Dayenu!"
Friday, July 6, 2012
My least favorite part of surgeries.
What is my least favorite part? The paranoia that comes along the road to recovery. I use the term paranoia quite accurately--just ask Dan. My OCD kicks into high gear for a while after one of Dan's surgeries or procedures. This is good (looking out for symptoms, catching complications quickly, etc.) and bad (the constant feeling of wondering when the other shoe is going to drop, being an annoying nurse-wife, tears, sleepless nights, etc.) I really don't mean to become this person, but it nearly always happens. Dan says I'm getting better. After 5 years of this non-sense, I'd better be getting better!
All of this to say, my paranoia is proving a bit correct this time.
In the post-op period of his hip replacement we knew we were going to be worried about several things and that we would have to be constantly on guard for certain symptoms. These include:
1. Deep vein thrombosis: watching for swelling in a limb that is already swollen from surgery is a little difficult. Asking Dan if he has pain in his leg is also interesting. Even though his platelets are low, he is still at risk for a blood clot. Since his platelets are too low for a preventive blood thinners, we have to just hope that Dan's mobility and exercises will be enough.
2. Infection: monitoring fevers, watching for infectious changes at the incision site, increased pain, etc. Unfortunately for Dan, his white count (the infection fighting cells) are also lower than normal. This could be simply a reaction from the surgery, but that means that his body does not have a typical army to fight off germs. Even movie theaters and fresh fruits and veggies can be the difference between home and hospital. And no showers until the staples come out--gross.
3. Dislocation: no bending more than 90 degrees, no crossing legs and no turning his foot inward. These are the 'hip precautions' that now rule our home. Elevated seats and toilets, grabbers for picking things up, sleeping with a very large pillow between his legs...makes for an interesting house! (On a good note: the surgeon said he tried to dislocate Dan's new hip after surgery and could not.)
4. Bleeding: Dan has low platelets (the clotting cells). This puts him at higher risk for bleeding. We have to watch out for hematomas or other signs of bleeding. Also, he has some pretty incredible bruises to show for it.
Now that we're all on the same page about what we're worried about, let me be frank about what's going on. Dan went for 3 days without fevers, so we thought we were in the clear. He finished his last run of antibiotics today and he was feeling good. Tonight, he developed a low-grade temp again. Grr. If it hits 100.4 F, he gets another trip to the hospital. So, he's now wandering around the apartment with ice packs and tylenol coursing through his system. It better work!
Also, he had a follow-up with his oncologist (cancer doctor) yesterday because his blood counts were not rebounding as fast as we'd like. He's now on bleeding precautions, neutropenic precautions (strict infection prevention) and waiting for the doctor to get some medicine approved to boost his immune system. He'll have to go in for shots 3 times next week (if insurance says yes). He's a bit irritated about not having fresh fruits or veggies, too.
He says the pain is very tolerable. He's literally walking all over the place. Per the physical therapist's recommendation, he doesn't sit for longer than 30-40 minutes at a time. He even tried walking around the apartment without a walker or cane--he did great! PT is very impressed with his progress. Yay!
He'll see the surgeon for a post-op next week, hopefully have the staples removed and get a general feel for how his recovery is coming along.
Dan is as optimistic as he has ever been. He doesn't complain about much of anything. He's still happy that he got the surgery and feels that things will smooth out fine.
I am the one who worries for the both of us. (Yep, the Bible says not to worry. Working on it.) We have moments that feel so normal and stress-free. Then, he gets a fever or his incision starts to bleed or his leg swells more than it has been. He stays calm, I go into hyper-vigilant nurse mode. Sometimes, I just really miss being a wife to a great guy, instead of a live-in nurse to a cancer patient. Dan, for the record, says he misses just being a hot husband instead of being a home health patient. Just a moment of honesty.
This period is just stressful. We know it will pass, but yikes, it is NOT fun right now.
For those of you in the area, I will be going back to work next week and Dan will still not be able to drive anywhere. He is fairly independent at home, but in the case of an emergent need, it would be good to have someone around. Also, since his immune system is low and he's not supposed to be out and about much, this apartment is going to get lonely fast. So, we are really hoping that people would come on over to visit or bring some meals for him or something. Prayers are amazing and needed, but we need some material and physical help, too. If you're willing, let us know!
Alright, so prayer requests seem pretty obvious at this point:
1. No blood clots.
2. No infections.
3. No dislocations.
4. No bleeding.
5. No more trips to the hospital.
6. The perseverance to be just be husband and wife.
7. No more cancer.
All of this to say, my paranoia is proving a bit correct this time.
In the post-op period of his hip replacement we knew we were going to be worried about several things and that we would have to be constantly on guard for certain symptoms. These include:
1. Deep vein thrombosis: watching for swelling in a limb that is already swollen from surgery is a little difficult. Asking Dan if he has pain in his leg is also interesting. Even though his platelets are low, he is still at risk for a blood clot. Since his platelets are too low for a preventive blood thinners, we have to just hope that Dan's mobility and exercises will be enough.
2. Infection: monitoring fevers, watching for infectious changes at the incision site, increased pain, etc. Unfortunately for Dan, his white count (the infection fighting cells) are also lower than normal. This could be simply a reaction from the surgery, but that means that his body does not have a typical army to fight off germs. Even movie theaters and fresh fruits and veggies can be the difference between home and hospital. And no showers until the staples come out--gross.
3. Dislocation: no bending more than 90 degrees, no crossing legs and no turning his foot inward. These are the 'hip precautions' that now rule our home. Elevated seats and toilets, grabbers for picking things up, sleeping with a very large pillow between his legs...makes for an interesting house! (On a good note: the surgeon said he tried to dislocate Dan's new hip after surgery and could not.)
4. Bleeding: Dan has low platelets (the clotting cells). This puts him at higher risk for bleeding. We have to watch out for hematomas or other signs of bleeding. Also, he has some pretty incredible bruises to show for it.
Now that we're all on the same page about what we're worried about, let me be frank about what's going on. Dan went for 3 days without fevers, so we thought we were in the clear. He finished his last run of antibiotics today and he was feeling good. Tonight, he developed a low-grade temp again. Grr. If it hits 100.4 F, he gets another trip to the hospital. So, he's now wandering around the apartment with ice packs and tylenol coursing through his system. It better work!
Also, he had a follow-up with his oncologist (cancer doctor) yesterday because his blood counts were not rebounding as fast as we'd like. He's now on bleeding precautions, neutropenic precautions (strict infection prevention) and waiting for the doctor to get some medicine approved to boost his immune system. He'll have to go in for shots 3 times next week (if insurance says yes). He's a bit irritated about not having fresh fruits or veggies, too.
He says the pain is very tolerable. He's literally walking all over the place. Per the physical therapist's recommendation, he doesn't sit for longer than 30-40 minutes at a time. He even tried walking around the apartment without a walker or cane--he did great! PT is very impressed with his progress. Yay!
He'll see the surgeon for a post-op next week, hopefully have the staples removed and get a general feel for how his recovery is coming along.
Dan is as optimistic as he has ever been. He doesn't complain about much of anything. He's still happy that he got the surgery and feels that things will smooth out fine.
I am the one who worries for the both of us. (Yep, the Bible says not to worry. Working on it.) We have moments that feel so normal and stress-free. Then, he gets a fever or his incision starts to bleed or his leg swells more than it has been. He stays calm, I go into hyper-vigilant nurse mode. Sometimes, I just really miss being a wife to a great guy, instead of a live-in nurse to a cancer patient. Dan, for the record, says he misses just being a hot husband instead of being a home health patient. Just a moment of honesty.
This period is just stressful. We know it will pass, but yikes, it is NOT fun right now.
For those of you in the area, I will be going back to work next week and Dan will still not be able to drive anywhere. He is fairly independent at home, but in the case of an emergent need, it would be good to have someone around. Also, since his immune system is low and he's not supposed to be out and about much, this apartment is going to get lonely fast. So, we are really hoping that people would come on over to visit or bring some meals for him or something. Prayers are amazing and needed, but we need some material and physical help, too. If you're willing, let us know!
Alright, so prayer requests seem pretty obvious at this point:
1. No blood clots.
2. No infections.
3. No dislocations.
4. No bleeding.
5. No more trips to the hospital.
6. The perseverance to be just be husband and wife.
7. No more cancer.
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