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First chemo today

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

Whew!! What a long day!
In an effort to get treatment started as soon as possible, my husband went to a different hospital where his onco practices to get the first treatment in. It is 55 miles from where we live. The drive this morning (during rush hour) turned out to be rather pleasant. We made it in about 1 hour 20 min. This is a small, community hospital which is so different from what we are used to at Georgetown. But all of the staff there were super! Since we had arrived early, things were moving right along. They got his IV port put in and his blood drawn before we saw the onc. After meeting with him we went back to the infusion center ready to go. I was thinking that we might get out of there about 2pm and beat the traffic back home. WRONG! Why is the longest part of the process waiting for the drugs?? It's like they drive to China to get them. It was noon before the first IV got started. The good part for me was the lunch provided!! I got to pick what kind of sandwich, fruit, cookie and soup that I wanted. Definitely had enough to keep me going.

For the most part, Ken was dozing on and off during the treatment. but as the day wore on he started having problems with coughing again (he had been up all night doing it). The muscous in his stoma was getting thicker and thicker. I tried to wipe it away but it was like glue. I asked a nurse if she could possible get us some saline solution when she had time. She said she would have to call the respiratory dept to get some "bullets". Within about 5 minutes, things got much worse and my husband started motioning to me that he couldn't breathe. The mucous was clogging the entire opening. I ran back out to the nurses station and told them they had to do something immediately. They improvised with a similar saline solution that they had and a syringe. After a few squirts, Ken coughed out a lot and the nurse used some cotton swabs to get more cleaned out. They asked respiratory to come down with a moist air hookup but by the time they came he was done with the last bag of drugs. The RT did talk to us though and recommened that we get the air machine to use at home. We had that initially when a trach was done during a previous surgery but sent it back after the laryngectomy. It was thought that once he was up and moving around, he should have no problem keeping his airways moist and clear. But no one knew how things were going to go down hill. In addition, the air in our house is so much drier with the heat running all the time.

Other than that (and the weak wireless connection, and the 2 hour drive home), it was a good day. We decided to go back there for the 2nd treatment next week. The RT was going to recommend that they have equipment ready at his next appt to give him moist air while he is sitting there.
Now I'm going to find an empty bedroom in the house and try to get a quiet night's sleep.
Debbie

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Debbie, sorry your husband and you had a couple of problems for his first chemo treatment. I'm hoping they will have the meds ready next time. You might want to call ahead and see if they are ready before you start driving. You shouldn't have to, but my experience is that sometimes that's what it takes. It sounds like the mucous problem was there before treatment and treatment and the infusion just enabled it. With a air machine/humidifier in the home maybe the mucous can be reduced overall and the reaction during treatment won't be so pronounced. It was a long day. I was only 25 minutes cross town from my chemo spot, and glad I didn't have to commute to it. Hope you got a good night's sleep and wish you both better luck next time around.

Hal

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

Hal...thanks for the suggestion about calling ahead for the drugs. I didn't know you could do that. That might be possible next time since we are going to do the blood work a day or two in advance. Then they will already have the results of that and should know whether the treatment is a "go ahead" or not.

and yes, the mucous problem already existed. I think this recent cold air and the heat running constantly has just got everything dried out. Plus, since he was stuck there in the chair he couldn't really take care of it the way he needed to. Will will be prepared with supplies next time!
He said he felt wiped out today but no nausea yet. Keeping our fingers crossed!

Hondo's picture
Hondo
Posts: 5744
Joined: Apr 2009

I use was is called a cool mist vaporizer in my room anytime the heater is on in the house, if not I will start to bleed from the dryness in the air.

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

We were using a small humidifier from the store but I guess that wasn't cutting the mustard. The nurse we had yesterday put in an order for an air compressor with nebulizer bottle attached and it was delivered this afternoon. My husband used one before the laryngecotmy surgery but didn't think he would need it afterwards and sent it back. So now we have that lovely piece of equipment in our bedroom again. It is SO LOUD....the noise really gets on my nerves after awhile. and we got the suction machine again too.

did you have a trach or laryngectomy? When you said you would start bleeding from the dry air, wasn't sure if you meant from a stoma.

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

Doug's team was based at Georgetown, but they fortunately are partnered with a community hospital in Montgomery County and so some of our doctor visits and most of his IV hydration have been there - much more convenient! In which direction from Georgetown did you go?

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

Mary, we were at Montgomery General yesterday. Is that the one you were talking about?
Is Dr. Deeken your oncologist? I'm not sure if there are others that practice in both spots.
debbie

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

Yes, Doug was getting his IV at MGH and Deeken is our chemo guy. Doug was there Thursday for the IV and we saw Deeken Wednesday - as with all of the doctors involved, he's been really great. Doug started at Georgetown because it was on his way to work and therefore better for daily radiation, but later on, when he was too tired to go in and I was driving him every day, we did wish he'd been able to do everything at MGH.

We had problems with delays at both infusion places - however, I do feel that both places take the extra time and energy to make sure you are getting everything you need.

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

It really is a very small world. We must have been at MGH the same time on Wed. (Since we were there ALL day long). I do like Dr. Deeken. I always feel like he would be willing to stay there as long as we needed to discuss things. This was the first time i had met his nurse up there, Gale. She was tremendous!
I bet you we share other medical people. I'll send you a PM.
Debbie

Dale_G's picture
Dale_G
Posts: 18
Joined: Dec 2010

I'm in Maryland too. Getting treatment at Frederick Memorial Regional Cancer Center. My biopsy and G-tube were done at Johns Hopkins, but that's too far to go on a daily basis.

Anyway, it's good to hear from people who are nearby.

Dale

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

Hubby still uses his air compressor whenever he's sleeping or feeling extra dry. We also have a HUGE humidifier in the living room to keep things flowing for him. Once you get a stoma, you gotta keep it sorta damp. Larys loose the ability to filter and humidify the air. I have a saline nasal mister at home for him so he can get the plugs out no problem.

Great to hear that even though the day was long, it was (mostly) good. Great to hear happy things :)

April

P.S. http://www.theial.com/ial/clubs/club_list.php?cat=club&st=MD even if your husband can't or won't go (like mine won't) they can give you great support and tips. If they are anything like the great guys in the group here, they'll come to visit as often as they can :)

debbieg5's picture
debbieg5
Posts: 168
Joined: Nov 2010

Hey April, thanks for the link. Unfortunately, they are a little out of date. Not sure about Baltimore, but I think the other 2 groups have closed up. Too bad 'cause La Plata is where we live. But the man that is listed as the contact is connected to the one in Silver Spring, MD. Herb came out to vist us right before Ken had surgery. About a month later we went to his house and then to the support group meeting. The club loaned Ken an electrolaynx to practice with to see if he liked it before purchasing. He didn't go very far with it; kept getting very frustrated. I don't think he's picked it up in over a month. It's very frustrating for communcation...either trying to read lips or him writing on paper.
Does your husband use an EL device?
Debbie

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