Wednesday, January 27, 2010

Urologist and got a wrist blood pressure cuff

Yesterday Tom and I went shopping and we got a wrist blood pressure cuff, blood pressure was 170/90 so maybe the diuretic is helping.

Today went to the Urologist and she examined me, she thinks I won't have to have my bladder lifted again but gave me a prescription to take for a month (haven't gotten it filled yet and can't read what it is, will put down here when I get it filled what it is) that is kind of an antidepressant but should help with the bladder problems.  UPDATE: The name of the medicine is Tofranil.

If that does not help then when I go back for my followup appointment which they will call me for, then she will use a scope to see if maybe I need an injection to "plump?????" my bladder (I still don't understand that one) but will have to wait and see as she has to consult with my previous Urologist and also my Oncologist.

So that is one thing taken care of and more pills to take (uck)  I don't seem to have too much of a pressure headache or pressure on my chest right now so maybe the Oncologist is right and it's just too much water retention causing the rise in blood pressure, at least I am hoping so. 

Okay that's about all the news fit to tell so will end here for now and write again when I am in the mood or at the latest my next Avastin session (Monday after next)

Take care all and have a great day.....................

Monday, January 25, 2010

Today's Treatment

Went in and the port was clogged again, they tried for about 1/2 an hour then left the heparin in and sent me to get my blood drawn through a vein, then had me come back and they tried for another 1/2 an hour, nothing so they sent me back to see the Oncologist with more heparin in.

He said I have had more weight gain and he thinks it's because of water retention so gave me a prescription for Lasix (furosemide) which is a diuretic and for K-dur which is used to prevent or to treat low blood levels of potassium (hypokalemia), which is a side effect of Lasix as is dizziness and fainting

No acknowledgement that one of the side effects  of Avastin (67%) is High blood pressure (hypertension).  High blood pressure is when someones blood pressure is constantly above normal. I have never had high blood pressure in my life, even in the middle of a panic or anxiety attack my blood pressure was always well within normal range now the last time I checked it at Rite aide it was 180/112 and today at the Dr's office it was 160/110 (Blood pressure is considered high when the systolic pressure is 140 or above and/or when diastolic pressure is 90 or above.)

So okay we try the diuretic and see if the fricking pressure headaches, chest pains and high blood pressure stop. I understand he thinks because of the rapid weight gain it is water or something but if "I" was my Dr. I'd be a bit concerned over the high blood pressure issue and the possibility of me stroking out or having a heart attack. And I think he is worried about that as he has changed the game plan once again; remember I was supposed to be on Avastin every other Monday until April when another PET scan would be done and we would see where we go from there? Well now I get one more treatment of Avastin and then a month off from ANY treatment....... Hmmmm wonder why? One guess? The fricking Avastin!

So then he tells me the same thing he has said the last three times ("Your scans all look the same") and dismissed me. The one bright spot was his assistant Amy told me my CEA level from last treatment (01/11/10) was 29.5 so good droppage there.

Then I go back into the day room and the RN calls me back for treatment, I'm stammering that they still have not gotten a draw back of blood and then puts in some medication they had to get from the pharmacy and I can't remember, puts it in, does the pumping thing for about 15 minutes and still can't get blood but goes ahead and puts in the saline solution and the benadryl/steroids/etc and lets it run for half an hour, she said to tell her if I felt "funny" well I got chills, my legs got RLS and my stomach was killing me, then suddenly it felt like something was pulling out of my port and the RN came over and the saline and side effect medicines were done so she tried to draw back blood and low and behold there was blood!

Now I was scared about that method as I had just enough medical training (Medical Assistant) to know a little knowledge is a dangerous thing and that you never shove drugs no matter what they are into a vein when you do not get a blood draw back because there is no telling what might happen (abscess, "miss", etc) and I was scared but apparently it worked and she did the Avastin treatment after that for 1/2 an hour then we came home and I ate a sandwich and some cookies (Have to start dieting I think, could be a factor in the HBP) and fell asleep then woke up sweating hard and with my head feeling like it was in a vise and my heart racing.

I have a feeling it's a race against if the Avastin will set me up for a stroke or heart attack before I get the month vacation from any treatment, not a hypochondriac, just a feeling I have.

And one more question I can't ask him as he will just say "I changed my mind" ...... Why is he giving me a month vacation from any treatment when I just had one not long ago because I was sick from a cold and yeah I know as my Tom says "Your scans look good and your CEA has dropped so far) but still I can't help going to myself in a small voice inside my head "But I have Stage IV colon cancer metastasized to my lungs and liver and there is no CURE for that so when do the bad downward effects for my cancr hit me"

Okay so that's it for now, when I am feeling better will write some more.

(((((((((((((hugs)))))))))))

Edited to add: I just came back from Rite-Aide and getting the prescription filled which I will start in the morning; I took my blood pressure at one of those things there:


BP = 190/110 ~ Pulse = 124

Thursday, January 21, 2010

Rainy Weather

For the past few days it has been raining it's butt off and my mood has been equal to the weather, today is the big storm and Tom has to go out and work in it so I am not happy but can only know with his training and experience as a truck driver that he will be okay.

I am coughing more again and just hope I am not coming down with a cold or the flu again or my bronchitis is not flaring up.

All in all I am okay but just out of sorts, maybe it's the weather, or well in a day or so it should go away.

I feel bad complaining when all those people in Haiti are dead or dying or have lost everything, I wish I could help in some way but on disability you barely have the money to take care of yourself much less anyone else.  All I can do is pray for them.

Just an update.

Thursday, January 14, 2010

Called the Oncologist again

Okay called the Oncologist again today and the results still are the same, looks like the tumors in my lungs are shrinking so he wants to just keep the Avasting going until April when we will do another PET scan.  And I have to call back Monday to get the latest CEA results as they are not back yet.

I am not feeling really well, not sure if it's side effects from the Avastin but when I was in Rite-Aide getting a prescription filled the other day my blood pressure was way high, like 180/112 or something like that and my head has been hurting but not like a normal headache, just a lot of pressure. And one of the side effects of Avastin is high blood pressure.

But I will wait until my next treatment and see if this stays consistant, if it does I will talk to my Oncologist and if not then no harm no foul I guess.

On the plus side, cold seems to be almost gone, still a little nose blowing and coughing but other than that seem to be much better on that front.

Tuesday, January 12, 2010

Blood work/See the Oncologist/Get Avastin treatment

Okay so yesterday I went to get my blood work/see the Oncologist/get Avastin treatment.

The wonderful RN was able to unplug the port she pushed the needle into the port and flushed it with saline which I could taste but she did not get a draw back of blood so she flushed it twice with heparin then began to pump the syringe like you would a bicycle pump, then had me lay back and then had me put my right arm up and turn my head to the left. Nothing. So more heparin and more pumping and suddenly she shouted "Got it" LOL everyone started laughing and congratulation her and she was grinning like crazy.

So I told her she was the most talented RN and persistance pays off I guess. Then went to see the Oncologist. The CAT scan was because he wanted to compare it with my last PET scan and the chest X-ray because as I said with the last PET scan the cancer cells in my chest were growing smaller and it "looked" like to him in the X-ray they had grown smaller even more, and this without a month of treatment (remember sick with the cold and didn't go in for treatment?) And he "thinks" the CAT scan has shown they are even smaller now but they had just sent over the tests so I have to call him on Wednesday.

He brought up the clinical trial again yesterday (The one they want me to pay $1500 for) and he said that he thinks since I have such great insurance (Medicare/Medical/Tricare for Life) that he should be able to get me in, I explained to him that all those insurances will pay for the supplies, the scans, the side effect medicines, the visits but not for the experimental drugs themselves, he said that cost would be minimal and maybe he could get the Dr. to waive it or something could be worked out (Oy Vey well we shall see)

So I call him on Weds for the actual results of the CAT scan, and am going to give him all the insurance company phone numbers (which he should already have but if he wants to do this I will help in whatever way I can.) and then on the 25th of this month I go to back to do the blood draw/see him/get Avastin treatment again. And then on the 27th of this month go to the Urologist.

Oh I looked at the blood draw sheet and yes he is ordering the CEA levels again.

Cold, ah still hanging in there but starting to dwindle more, blowing my nose a bit still, the worse is the cough but I always get that as have recurrent bronchitis.

Oh, I had a bad night last night, they stopped giving me the benadryl before the Avastin but are giving me other things for side effects including steriods before the Avastin, so not sure if it was the Avastin or my pigging out last night before the Avastin or my cold just making one last stand but I woke up several times last night coughing to the point of throwing up, hot/cold throwing blankets off then pulling them back on, sweating and just generally feeling miserable. I thank God every day for my Tom, my miracle, as even if there is nothing he can do to help just him being here and holding me helps.

Oh two more things (he he he)

1. I sytmied my Oncologist for a moment yesterday, when he was getting up to indicate our time was up I asked him why he decided to go into oncology, at first he looked puzzled and said I don't know, then walking down the hall he said he had a mentor in med school who guided him along this path.

2. When I was back in Fresno and living with a friend Mary we used to watch "House" all the time and I made the comment I wished I had House as my Dr. (after the cancer diagnosis) well be careful what you wish for as I realized my oncologist is my Dr. House, maybe not the brilliant diagnostician and really not a people person but pretty good at his job for all that (grins)

I hope you all are happy and doing well and again thank you all for being here for me ((((((((((((((hugs)))))))))))))))))

Friday, January 8, 2010

CAT Scan

Okay am back, well my port is totally clogged so the tech had to use a vein in my arm to inject the iodine She is going to inform my Oncologist and I called and left a message for him also.


So we shall see what happens on Monday when I go in for treatment.

Thursday, January 7, 2010

Cold, Dr's visit, Chest X-Ray and now a CAT scan ordered

Well I went in to see my Oncologist about my cold as he was worried I had pneumonia, went to the hospital and had a chest X-ray which when I talked to him afterwards showed no sign of pneumonia. He told me to just keep taking Theraflu, using my vaporizer and getting rest and he would see me on Monday when I come in for my blood work, to see him and to get my Avastin treatment.

We talked for awhile and he did answer a lot of my questions; The Avastin is indeed for maintenance to give my body a rest and we will do a PET scan in April and then decide what is the feasible treatment, the same course of chemo or ablation or surgery or what.  Also he explained more about the KRAS mutation which is what I thought it simply means there are some 2nd and 3rd line chemo drugs which will not be available to  me as with the mutation they will not work.  So he actually is trying to do the best for me by not subjecting me to constant chemo and letting the cancer cells build an immunity to them and then not having a lot of other options after that.

So today I get a phone call from my Oncologist's Assistant that the hospital will be calling me to set up a CAT scan for tomorrow of my whole body.  Then the hospital called and I have to be there at 9:30am.  So wonder what that is about? Oh well, guess I'll find out Monday when I see the Oncologist.

Hope you are all well and happy and safe ((((((((((hugs))))))))))))

Saturday, January 2, 2010

Belated Happy New Year!

Belated Happy New Year everyone and I wish all health, wealth and prosperity in all