Hi WISH buddies!
I am sorry I haven't responded to your emails & PM's. I do appreciate your support and well wishes, it has just been such a whirlwind around here. I spend much of my time on the phone organizing Drs & home health care people. And then there are the kids & their end of school year activities.
Since I haven't posted this on the main thread yet, I will update those that don't know what's going on. DH was diagnosed April 7th with stage 2 tongue cancer. There is a considerable mass at the base of the tongue. Now he has never smoked or done tobacco products and is 20-30 yrs younger than the avg patient for this. (ain't it grand to be unique) This type of cancer does react well to treatment and it has not gone into the lymph nodes or anywhere else in the body (thats the good news) His treatment plan is 7 weeks of radiation & 3 chemo treatments. Well because doing radiation to your mouth can be both painful to the mouth & damaging to the salivary glands alot of the time during the course of the treatment you get to the point where you cannont swallow. So in order to insure continuing nutrition they put in a feeding tube. This is (or should have been) and easy outpatient procedure. And would give him the nutrition he needs to get better later on.
Well even with all of this I still had plans of going to the Minnie. He really wanted/needed me to go & I did to before the affects of his treatment started happening. The Wednesday before Minnie we went to the GI dr because he was still having extreme pain from this easy outpatient procedure. Well he admited him to the hospital that day. Cat scan shows that when they put in the tube they nicked a blood vessell on the inside of the stomach muscle wall causing hematoma(bleeding inside) and LOTS of pain. They put him on IV pain meds & was released from the hospital the Saturday b4 Minnie. Well by 2:00 a.m. Monday we were back in the ER because of extreme pain. Another cat scan confirms that it had absessed (sp?) Once again admitted to the hospital. Normally your body absorbs the blood, but his pooled into a pocket & the dead cells got infected.
By Monday evening they were doing surgery to drain the absess. Well as I'm waiting in the surgery waiting room with my best friend, the anestesiologist comes out to talk to me & asks me to go to the conference room. I knew this wasnt good because everyone elses Drs. were talking to them right there. When I go in, in comes the trama surgeon, & GI Dr. They wanted to do a tracheotomy. They had consulted the oncologist & apparently this may have been an eventuality anyway. When they put the scope down his throat for the anestesia it barely bumped the tumor (which you can see when he just opens his mouth) and it bled. They kept him under while they came to talk to me & get permission.They were worried about how easily it happened & that it could have happend at home & if he bleeds out & need to pack it he wouldnt have a good airway. So yet another hole in my husband. And this wins him a trip to ICU for a few days. Since it was not planned & decided by me in the middle of his operation, he had no idea that he was going to wake up in ICU with a trach. AWFUL!!!!!! But I felt (and still do) that this was the best decision for the situation. Not breathing kind of sucks! But when you first get a trach in you cannot talk, so he woke up in ICU on a respirator, with a trach not being able to talk.
When we were on our way to the GI Dr back before he got put in the hospital the first time, he said he felt like he was just waiting for a black widow to come land on his arm. He wasnt supposed to have the cancer, the feeding tube was supposed to be the easy part, oh and did I mention that when the oncologist did the routine blood work they found out he has type 2 diabetes.
Well back to the ICU, the next day the GI dr comes in & tells me they are consulting a nefrologist(sp?) because his kidney numbers are way up. The contrast you drink for a cat scan is really hard on your kidneys and it is even worse for a diabetic. Well he had 2 within 5 days of each other. When we heard that he wrote on his book to me "black widow" . He was just so mentally, emotionally & physically beat down by all of this & he hadnt even started treatment for the cancer yet.
So we now have 7 doctors on our team: trama surgeon, GI, 2 oncologist, GP, nefrologist, infectious disease. Ugh! And 3 home health care agencies , one for each extra whole/equipment coming out of his body.
So the 2nd time he was in, he spent 1 1/2 weeks in the hospital to put him at 2 weeks total. He got out last Wednesday evening.
He came home on a portable wound vac. It's this suction thing they put on the wound where they drained the absess. They do not close up wounds this big, they want them to heal from the inside out. It has to be on him at all times & home health comes 3x a week to change the dressing. He will have this for a couple more weeks.
We also have the humidifier & suction machines for the trach. He can talk now, they have put in a smaller trach. We are hoping to get rid of this in a few weeks once radiation shrinks the tumor some.
Then the other thing is the feeding tube. He is getting all of his nutrition through it, but since he basically didnt eat for 2 weeks getting his system back working is taking some time. He has 20 lbs of water weight on him since his kidneys arent functioning properly and his stomach is not digesting properly so he is only getting 2 feedings a day which is about 800 cal. He is on meds to help get his stomach back to normal.
He started radiation last Tuesday while he was still in the hospital. So he has done 4 out of 35 treatments. We are seeeing the medical oncologist Monday to see when he can start chemo. It had to be delayed since it affects your white cell count & ability to heal , they wanted to get rid of more infection & get the wound healed more before he started. He may start chemo next week.
So this is why I have not been able to respond to you wonderful people. There was not simple or short answer for what was going on. I am thrilled to be part of such an awesome group & even though I havent been around lately I have been thinking of you guys.
He is doing much better now, he even went to DS6 t-ball game last night. He was one of their coaches & they were all so glad to see him there. They made a great card & enclosed several gift certificates to nearby eaterys. I have had a couple neighbors bring over dinner while Rick was in the hospital & they 2nd time it happend Seth said "everyone sure is being nice to us" It is overwhelming to see how many people care about us and have helped us out. Rick has not been able to do yard work for almost a month now but it looks better than ever. In addition to some neighbors cutting the grass, DS teacher's husband came over one day this week with 3 of his employees and gave the yard the works (and they are not landscaping, they are engineers)
To those emails & PM's I havent responded to: thank you so much and please know that I do appreciate it!!!!!
I am sorry I haven't responded to your emails & PM's. I do appreciate your support and well wishes, it has just been such a whirlwind around here. I spend much of my time on the phone organizing Drs & home health care people. And then there are the kids & their end of school year activities.
Since I haven't posted this on the main thread yet, I will update those that don't know what's going on. DH was diagnosed April 7th with stage 2 tongue cancer. There is a considerable mass at the base of the tongue. Now he has never smoked or done tobacco products and is 20-30 yrs younger than the avg patient for this. (ain't it grand to be unique) This type of cancer does react well to treatment and it has not gone into the lymph nodes or anywhere else in the body (thats the good news) His treatment plan is 7 weeks of radiation & 3 chemo treatments. Well because doing radiation to your mouth can be both painful to the mouth & damaging to the salivary glands alot of the time during the course of the treatment you get to the point where you cannont swallow. So in order to insure continuing nutrition they put in a feeding tube. This is (or should have been) and easy outpatient procedure. And would give him the nutrition he needs to get better later on.
Well even with all of this I still had plans of going to the Minnie. He really wanted/needed me to go & I did to before the affects of his treatment started happening. The Wednesday before Minnie we went to the GI dr because he was still having extreme pain from this easy outpatient procedure. Well he admited him to the hospital that day. Cat scan shows that when they put in the tube they nicked a blood vessell on the inside of the stomach muscle wall causing hematoma(bleeding inside) and LOTS of pain. They put him on IV pain meds & was released from the hospital the Saturday b4 Minnie. Well by 2:00 a.m. Monday we were back in the ER because of extreme pain. Another cat scan confirms that it had absessed (sp?) Once again admitted to the hospital. Normally your body absorbs the blood, but his pooled into a pocket & the dead cells got infected.
By Monday evening they were doing surgery to drain the absess. Well as I'm waiting in the surgery waiting room with my best friend, the anestesiologist comes out to talk to me & asks me to go to the conference room. I knew this wasnt good because everyone elses Drs. were talking to them right there. When I go in, in comes the trama surgeon, & GI Dr. They wanted to do a tracheotomy. They had consulted the oncologist & apparently this may have been an eventuality anyway. When they put the scope down his throat for the anestesia it barely bumped the tumor (which you can see when he just opens his mouth) and it bled. They kept him under while they came to talk to me & get permission.They were worried about how easily it happened & that it could have happend at home & if he bleeds out & need to pack it he wouldnt have a good airway. So yet another hole in my husband. And this wins him a trip to ICU for a few days. Since it was not planned & decided by me in the middle of his operation, he had no idea that he was going to wake up in ICU with a trach. AWFUL!!!!!! But I felt (and still do) that this was the best decision for the situation. Not breathing kind of sucks! But when you first get a trach in you cannot talk, so he woke up in ICU on a respirator, with a trach not being able to talk.
When we were on our way to the GI Dr back before he got put in the hospital the first time, he said he felt like he was just waiting for a black widow to come land on his arm. He wasnt supposed to have the cancer, the feeding tube was supposed to be the easy part, oh and did I mention that when the oncologist did the routine blood work they found out he has type 2 diabetes.
Well back to the ICU, the next day the GI dr comes in & tells me they are consulting a nefrologist(sp?) because his kidney numbers are way up. The contrast you drink for a cat scan is really hard on your kidneys and it is even worse for a diabetic. Well he had 2 within 5 days of each other. When we heard that he wrote on his book to me "black widow" . He was just so mentally, emotionally & physically beat down by all of this & he hadnt even started treatment for the cancer yet.
So we now have 7 doctors on our team: trama surgeon, GI, 2 oncologist, GP, nefrologist, infectious disease. Ugh! And 3 home health care agencies , one for each extra whole/equipment coming out of his body.
So the 2nd time he was in, he spent 1 1/2 weeks in the hospital to put him at 2 weeks total. He got out last Wednesday evening.
He came home on a portable wound vac. It's this suction thing they put on the wound where they drained the absess. They do not close up wounds this big, they want them to heal from the inside out. It has to be on him at all times & home health comes 3x a week to change the dressing. He will have this for a couple more weeks.
We also have the humidifier & suction machines for the trach. He can talk now, they have put in a smaller trach. We are hoping to get rid of this in a few weeks once radiation shrinks the tumor some.
Then the other thing is the feeding tube. He is getting all of his nutrition through it, but since he basically didnt eat for 2 weeks getting his system back working is taking some time. He has 20 lbs of water weight on him since his kidneys arent functioning properly and his stomach is not digesting properly so he is only getting 2 feedings a day which is about 800 cal. He is on meds to help get his stomach back to normal.
He started radiation last Tuesday while he was still in the hospital. So he has done 4 out of 35 treatments. We are seeeing the medical oncologist Monday to see when he can start chemo. It had to be delayed since it affects your white cell count & ability to heal , they wanted to get rid of more infection & get the wound healed more before he started. He may start chemo next week.
So this is why I have not been able to respond to you wonderful people. There was not simple or short answer for what was going on. I am thrilled to be part of such an awesome group & even though I havent been around lately I have been thinking of you guys.
He is doing much better now, he even went to DS6 t-ball game last night. He was one of their coaches & they were all so glad to see him there. They made a great card & enclosed several gift certificates to nearby eaterys. I have had a couple neighbors bring over dinner while Rick was in the hospital & they 2nd time it happend Seth said "everyone sure is being nice to us" It is overwhelming to see how many people care about us and have helped us out. Rick has not been able to do yard work for almost a month now but it looks better than ever. In addition to some neighbors cutting the grass, DS teacher's husband came over one day this week with 3 of his employees and gave the yard the works (and they are not landscaping, they are engineers)
To those emails & PM's I havent responded to: thank you so much and please know that I do appreciate it!!!!!
