My continuing diary of events:
Last week was my off week from chemo. My husband and I were really looking forward to it. We had such good news about my status on News Year’s Eve that we were going to really going to celebrate on my off week from chemo. My first 2 weeks went without too many side effects. I had a little dizziness and a little fatigue but that was about it.
However, late in my third week (when I should start feeling better) I started having the urinary problem that I frequently have as a side effect of chemo. It is usually mild and only lasts a day or so. Well, this kept getting worse and worse and lasted all through my off week. Spoiled the whole week. It was the worst side effect ever. It lasted to this Sunday.
Well, Monday was my scheduled monthly oncologist visit. We got there early to be sure that they could take my blood and urine and process before we saw the doctor. The waiting room was over flowing with some cancer patients having to stand up. There were people mobbed around the room where the phlebotomists work. I went to sign in there and there were over 2 pages of unprocessed patients. I went ahead and signed up. Finally found a seat for me and my husband.
A few minutes later I was called by my doctor’s nurse. I told her I hadn’t had by blood and urine done. She said that she had already checked and it was going to be a very long time before I was at the top of “that list”. She was going to have me see the doctor first then come back for the blood and urine. They had a new phlebotomist and she was very slow. Anyway, the nurse took my vitals. Every thing was normal except my blood pressure which was 130/100. I have never had anything like that before. I bet it went up even higher once I knew how high it was.
We went back to the examination room and my doctor came right in after us. I have never had that happen with any doctor. (We found out later, that due to the back up with the phlebotomist, doctors were waiting for patients rather than than the usual opposite.) The good news on my thyroid is that it isn’t cancer but I need to see an endocrinolist. I may have some type of auto-immune disorder that is causing the problem with the thyroid. (What in the world now!) Oh well, add another doctor to the growing list. For now I continue on Synthroid.
As for my high blood pressure, we have known that it is one of the most common side effects of the Avastin that I take for chemo. Frankly, the oncologist has just been waiting for it to show up. The doctor told me that I would have my blood pressure taken one more time when I got down to the Chemotherapy area. If it was still high, I would be put on high blood pressure medication. Not what I wanted to hear but not unexpected.
Then we discussed my finger nails which I may loose. I can’t even imagine what this could be like. I am having pain in some of the nail beds and those nails are discolored. The oncologist slightly decreased my prescribed chemo dosage of Taxol. If I continue to do as well as I have, I may be able to totally come off the Taxol just remaining on Avastin. Wouldn’t that be something!
Then we discussed the “side effect” that I had over the past weeks. I described it as like “the worst bladder infection you have ever had”. Well, said the doctor, maybe it was. Whoa! I have described this side effect to the doctor before. I had a severe episode with the first round of chemo. But to be fair to the doctor, since that first time, I haven’t pushed it since it has been so mild. We put it in the side effect column. The doctor ordered a urine culture. The nurse called today, Tuesday. Enough bacteria showed up in the urine culture to show that it had been a severe urinary track infection. I am now looking at my new bottle of antibiotics. I won’t ever put up with what I think are “only side effects” again. I wasted almost 2 weeks of my life and my husband’s life, how stupid!
When we were through with the doctor, I went to sign up for labs again and found that they hadn’t yet gotten to my name. About 10 minutes later they called me. The new “port nurse” was slow, slow, slow. Nice as can be and disorganized as can be. She finally got the hook up to my port done and my blood draw done.
We then went down to chemo. I was hoping since we had a later appointment I would have my regular chemo nurse back but she had the day off. Anyway, I had an hour wait in the chemo waiting room. Not their fault, they kept calling for my labs that hadn’t yet been processed. I’m finally in my chemo chair and the nurse comes to take my blood pressure. It was 120/80 and the nurse said she was sure that it would continue to come down. So no blood pressure medication is required. Hooray! The treatment went as usual with no more surprises. Of course, I collapsed on the sofa when I got home and snoozed the rest of the afternoon away.
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(The reason that these posts are so long is that I use these to jog my own memory about what has happened and when it happened. I’m too lazy to keep a separate diary.)
I had the last round in this cycle of chemotherapy yesterday. I’m sure that it won’t be my last round of chemo. For that, I thank the Lord. My condition was so bad to begin with, I think of chemo as a gift in my life.
The last two appointments were at 7:30 in the morning. Not a good time and really impossible to make on time. However, being late is not from lack of trying on our part. We get up at 5:30 and get ready to be there at 7:15 for the blood draw. However, the nurses that do the blood draws aren’t really open for business until after 7:30. So, I’m always late to chemo. Lack of coordination between 2 closely related departments of the same hospital located only one floor away from each other. No more 7:30 appointments for me.
Other than being late to chemo and my blood and urine results being a little late this session of chemo went fairly well. My main problem with early chemo is that my usual chemo nurse isn’t in that early and I have missed her. She is great. I know that she will be off at some point in the next couple on months since she is having a baby and I want to try and get on a schedule for chemo that lets me have my favorite nurse until she has her baby.
The nurse I had yesterday was OK. She was nice but she was pulling hard on the tubing attached to my port when she was hooking me up to the IV machine. She didn’t notice even when I came half way out of the chair to keep the tubing from being pulled out. I also had to ask for a blanket and pillow. This is what the nurses are automatically supposed to ask you about. But to be fair, she was adjusting to a new patient and what I was taking for chemo. She was very attentive to being sure that the meds were correct and being sure that I wasn’t having any side effects from the pre-treatment, the Taxol or the Avastin. I’d rather have to ask for a blanket than have the wrong med.
When the clerk scheduled my chemo appointments for this cycle, she also scheduled an ultrasound on my thyroid. Trying to save my husband and me an extra trip to the medical center, she scheduled it for yesterday afternoon. I really didn’t notice at the time. Of course, later when I looked over my schedule, I was upset. All I feel like doing after chemo, especially the long chemo session which yesterday was, is go home a lay down on the sofa. A problem with my thyroid was identified when I had my mastectomy but never really resolved. Was it a goiter or mets from the breast cancer. The last bone scan seems to lean toward the goiter position. So, it was really past time to get this question resolved. If it isn’t cancer, then I need get treatment for the thyroid problem.
We got through with chemo before 11:30 and the ultrasound wasn’t until 2:30. So, we ate at the McDonald’s at the medical center instead of having a healthy lunch at the hospital cafeteria. My fault, I had a craving for McNuggets and fries. Why? Well, I’m sure that it’s the fault of the chemo drugs. At least that’s my story and I’m sticking to it. Any way, it didn’t agree with me. So there I sit with stomach cramps and pain, pain, pain.
Any way, at about 1:30 my husband gets me to agree to go check in early for the ultrasound. Since it listed Radiology for the ultrasound location, I went to the main radiology check-in at the medical center. Right outside was a gentleman who asked if he could help us and he did. He found out that the ultrasound was located in out-patient radiology in the clinic area. That is, of course, where the cancer clinic and the chemo treatment area are. These two areas, while in the same huge building, are quite a distance apart. He offered to show us the most direct route and took us to where the check-in was for the ultrasound. Turns out he was a doctor there. Can you believe! (That was the third person that stopped us in less than 10 minutes asking if they could help. The hospital must be having some type of program going on relative to “customer service”. I’m not saying that employees haven’t been helpful in the past but that was when you asked for help. These people yesterday were totally unsolicited.)
Anyway, I checked in at 1:30. The check-in clerk said it was very unlikely that they could take me before my scheduled time but that she would let them know I was there. Five minutes later I’m called for the ultrasound and at 2:00 my husband and I are on our way to the parking garage. My husband says we should have checked it right after chemo and we might have been out of there by 12:00. I think we probably would have been sitting there for hours.
I couldn’t really tell from the ultrasound’s technician’s reaction what the results may be. I’ll have to wait a week until my scheduled doctor’s appointment. That is, unless the results are so bad that they call in me.
Well, today I have my usual minor dizziness. This starts 12 to 24 hours after chemo and lasts about the same length of time. It’s irritating and I can’t even think of driving.
However, I am so grateful that I seem to be doing well. I have been blessed with relative minor side effects from chemo. You know that you are doing well when you are bored and looking for activities to do outside your home and sofa.
I think of all of you and the wonderful fight you put up against our enemy, cancer. I wanted to share this good news story with you. My sister-in-law’s cousin has been fighting breast cancer for over 4 years. It was turning into a loosing battle. She had developed tumor sites that were becoming visible through her skin. Rather as a last resort, they put her on Avastin. In one month, she has had a dramatic turn around and her doctors are greatly encouraged about her condition. This is an additional encouragement to me since I am also on Avastin.
Good luck to all of us this year.
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Sorry that I’ve haven’t been communicating with you all. I’ve been having problems logging into this site. Just figured out my problem a few minutes ago.
Well, last Friday, December 28, 2007, I had my CT scan and my bone scan. These were the first since I began chemo. The initial tests done on me were not good at all. My husband and I were simply hoping that these tests showed either no deterioration or only minor deterioration. Under either of these scenarios, the oncologist would be willing to continue treatment.
Well, we arrived early for the tests and got caught up in some hospital melodrama about the CT tests being backed up. I never did find out exactly what was going on, and to tell the truth, really don’t care to know. The lateness of the CT pushed back the bone scan but everything finally got done. The hospital gave us (my husband and me and everyone else waiting) $5.00 vouchers for the cafeteria. This upset the CT tech who said that it wasn’t enough to get any type of decent lunch in the cafeteria. I told him in the larger picture of life it really didn’t matter.
I had to wait until Monday, December 31, 2007 to get my results from the oncologist. Yes, that’s how my husband and I spent New Year’s Eve. But, as my husband has put it, we got the best Christmas present ever on New Year’s Eve. The test results were great. Everything is showing an improvement. The spots on my lung are actually gone. I know that this may be only temporary but what a great way to start the new year.
I have always had chemo on Fridays but, since we were at the medical center and I had been off chemo for 2 weeks, I decided to start right back on that day. So I’m tied to Mondays for the next cycle. So that’s how we finished our New Year’s Eve—chemo. But what a relief, since I went in to the see the oncologist not knowing if treatment could be continued.
I did tell the oncologist that I had one wish. Someone needs to figure out how to let you keep your eyelashes. Hair on your head is vanity, you can do without your eyebrows but your eyelashes have a purpose—keeping stuff out of your eyes. Oh well, that’s the worst complaint I currently have so I had better shut up.
I hope everyone had a Merry Christmas and a Happy New Year.
I hold you all in my thoughts and prayers.
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