In the tank............maybe for the last time!!!

Wham!! I've been slammed hard this time. I can't get past the nausea and gastric issues. The fatigue is overwhelming. I'm just barely able to go from chair to bed.

Today we tried to do the lymphedema wrap ourselves for the first time. That was tricky!! The wrap has to be really light tension on the various wraps then there is a sleeve that goes over it all. The first time we got it too tight. Now it is just a pleasant squeeze that should move the fluid up the arm and over to the trunk and then out.

My friend Marilyn brought a great dinner for us on Thurs night and we had plenty of leftovers to get us through the weekend. What a good friend! How nice to not have to plan menus.

I can see light at the end of the tunnel but I have too look through a heavy fog to see the light. I'm discouraged to be so sick at this point; but at least I can see the end. I don't want to be so darn tired. I want to be able to get up and do what ever it is that my mind wants to do. Really.......just let me get up and do something!!!

I have 3 lymphedema treatments next week. Hopefully I can get to the point where I just have a sleeve on my arm and not a full blown wrap. That would be nice.

Post Chemo 6 is a roller coaster ride

I have met with the radiology team to plan the 6 weeks of treatment which will begin in 3 weeks. The treatments will be quick, 10 minutes or so one the table, and 30 minutes door to door. There will be at least a suntan line or rather a box around the breast and arm pit. More like a winter tan line that will disappear. There shouldn't be burning or blistering as they have a lotion for that! [At least it isn't another pill....I'm tired of pills.] They will do a CT scan before radiation actually begins. Then the next step is to do a radiation trial to line up the markers. They do say that fatigue is a common side effect but think that it is not as bad as chemo fatigue. That is encouraging.

So on to the chemo 6 and fluids. I really could not believe how "free" I felt when that last baggie of drugs when in. Just let me be DONE!! Then next day I went in for fluids and didn't even mind the Neulasta shot going in my belly.

Then it was on to the Lymphedema PT clinic for an arm wrap. The massage is interesting as it is such a light touch that it is almost not noticeable, yet very effective.Today the wrap is not so binding as the arm is about half the size it was when lymph edema hit. I've been sleeping with the arm up on 4 pillows to promote drainage. It is working. Husband has had a lesson in wrapping so we can practice that tomorrow. 

Today has been a weird day. The morning I felt great. After lymphedema clinic I tanked and had to sleep for 3 hours this afternoon. Tonight I'm just ga-ga and not too stable so will probably just go to bed early.  Chemo 6 was likely to be harder than the others due to cumulative effects of the drugs.  Guess it is a good time to just sleep this off and start on the new path to recovery another week.

Chemo 6 is ON BOARD

Today was the day for celebration of the end of chemo infusions. I have no words to express the amount of relief I feel. I knew I was ready, anxious, scared....and more. However, I wasn't prepared just a total wipeout from the finality of the stress of it all. I'm am really numb from relief. So it is early to bed tonight to just crash.

The lymphedema wrap is working and causing the 2 liters of fluid to drain. The wrap was really tight at first and then by this morning I could move my wrist, elbow and the arm pit didn't hurt. I designed a plan to keep the arm up on a stack of pillows with the fluids set to flow downward to the arm pit when they would drain into the trunk and get excreted by the kidneys. I was up and down all night to the bathroom. My sleeper helper was NOT impressed. Neither was I. The goal is to get the fluid drained down enough to eliminate the need for the ace bandage wraps and just use the compression sleeve. With the wrap going around the palm of my hand I have limited movement of my fingers. Probably I could sew by now but I'm too tired. Will check that out later.

Keep those good thoughts and prayers flowing. I'm starting into recovery mode now and would appreciate a good tailwind.

Last chemo delayed due to scheduling snafu

Somehow either I or the scheduler at the clinic screwed up my infusion schedule for today. We had the Dr visit coordinated but I didn't have a separate time in my calendar for infusion to start at 10:45. So I had to reschedule chemo infusion for Weds and then the fluids and Neulasta for Thurs.

The Dr visit was productive. He did say that since I had a very aggressive treatment protocol they would not do a CT scan again. The original CT before chemo did not show any cancer in the lymph nodes or elsewhere. My labs today were back into the normal ranges. Dr says I can begin radiation 3 wks after the last chemo. And that is the same time I can end semi isolation and resume visits to my Mother at the Alzheimer's facility.
 
I'm really bummed about not getting this last chemo today. Of course a 2 day delay is not a big deal in the grand scheme of life. That does NOT mean much to me today.

New Hobby = Lymphedema P T

O, good grief, Charlie Brown!! I had my first lymphedema appointment today and will be going to P. T. 3x/wk for the next 90 days. I do NOT need another hobby!! And I get a new wardrobe to go with the new hobby. First there is a compression sleeve. And then there is a bandage for night time wear. The bandage is to be tighter at the hand and gradually looser toward the arm pit. The goal here is to train the remaining lymph nodes [I have slightly less than half remaining] to drain the fluids without the 18 missing nodes.

I don’t know yet if this sleeve/bandage is a daily for life deal or “as needed” for life. Apparently there is going to be much to learn. Lymphedema is like arthritis in that it can flare up at any time and for no apparent reason. Fine…….so you just know that there will be times that both conditions will decide to hit at the same time. On the other hand, there will be times when both are in remission. Planning travel is going to have a little more mystery, I guess. I will have to wear the compression sleeve for flights. And maybe a spare set of sleeves will have to go in the “don’t leave home without it” bag.

Next week is chemo 6 and I won’t be up to learning new P T skills so the 3 appointments that week will be mostly lymphatic drainage massage. Then the next week I can start learning P T. skills. The P T clinic is in the same bldg as the oncology/radiation clinics so I hope to get the appointments scheduled so I do 2 in the same trip. I would really like to get back to my real life and spend as little time at Baylor as I can.

Lymphodema strikes

Today’s adventure is lymphodema, a swelling of my left arm as a result having 18 lymph nodes removed. When I woke up I was first aware of stiffness in my hand and then noticed that the hand was really swollen and it hurt to make a fist. The swelling goes from my fingers to my arm pit.

There is a good side of this: when my upper left arm is swollen. I don’t have “bat wing syndrome” …. Just on the left, though. So what is worse than a bat wing? An upper arm that is bigger than the original bat wing. Bummer.

I went to the oncology clinic for fluids and a lymphodema consult and a referral to the physical therapy clinic for treatment. I was advised to keep the left arm elevated as much as I can tolerate for the next few days. There is good news. I can no longer do mopping or wash windows or play golf or tennis. Well, I’ll really miss that tennis!!! Seriously, I will need to wear a compression sleeve for a while and find a lymphodema massage therapist.

Time will tell if this is to be a limited time event or a long term problem. Stay tuned.

Behind the curve again……..

Check out this most current development in the surgery procedures for breast cancer.

http://www.nytimes.com/2011/02/09/health/research/09breast.html?pagewanted=1&_r=1&partner=rss&emc=rss

What a great improvement!!! Just 4 months ago when I had surgery for breast cancer I was careful in researching the most conservative management of the disease. The bad news was that I have a very aggressive form of breast cancer. The good news is that it was caught early. The surgeon was able to remove the cancer leaving a clear margin without exposing the chest muscle wall.

At that time it was standard procedure to check for cancer cells having moved to the lymph nodes. I had cancer in the sentinel lymph node therefore the surgeon continued removing nodes checking for cancer. An additional 4 nodes were found to have cancer so the 18 nodes underneath my left arm pit were removed as was the standard protocol.

Just having the nodes removed is a big deal. There is considerable pain after the surgery and that lingers to this date. The lumpectomy even with that darn drain was healed long before the arm pit quit hurting all the time. There are serious long term issues that must be managed post lymph node removal. My left arm can never be used for blood draws or blood pressure readings. I need to wear a compression sleeve when I fly. I have to be aware of protecting my left arm from being elevated for any extended period of time. Now I have my PowerPort band on my left wrist. Later on I will get a MedicAlert bracelet to note the condition and to remind me to tell the medical personnel to use the right arm exclusively.

Improvements in breast cancer procedures are happening so fast. I just happened to be behind the curve this time.

To the edge of the abyss

Because of the ice storms last week I did not get fluids and Neulasta the day after chemo as is the usual sequence. The result was that the chemo 5 drugs were going through my system for a few days as pure toxic chemicals, no buffers. When the oncology clinic opened a few days later and I got fluids and Neulasta it was too little too late so down I went. Here’s what happened:

Chemo 5 has been a rough ride from the get-go and got bad enough yesterday to send me back to Baylor for more drugs. I knew I had not been doing well for the last few days however didn’t know just how bad I had gotten until Domino refused to leave my bed even to go pee. I guess there are times when one can be too sick to know they are too sick. So early yesterday we went “drug seeking” yet again to the oncology clinic. Turns out I had no blood pressure, no fluids, none of my critical blood values were not even near the “normal” range. Domino was right, I was too sick to leave unsupervised.

A jug of fluids plus antibiotics plus gastric meds were just what the Dr ordered. There was a boat load of stuff going through my port and I could feel myself getting better quite soon. I did fall asleep a few times during infusion which is unusual for me.

We got home late in the afternoon, just in time for a solid nap before dinner. Domino checked me out as he usually does when I get home from the “vet.” He wasn’t ready to give up closely supervising me so we somehow managed to get both of us wedged into the loveseat for a nap. By the evening he decided I could move about the house alone and he went back into guard dog mode. Today he agrees that I am much better.

Just one more round to go………. Somehow.

Pain City TX

O, my aching bones!! TX is under a blanket of ice and snow. It is just plain COLD here. We had to skate over to the infusion clinic for fluids and Neulasta. This chemo cycle has hit hard with all the usual side effects; however, the main problem is bone pain. Joan made me a heat pack [field corn in a denim sack, heat in microwave] which helps and is easier to manage than pain pills. Domino and I snuggled down under 3 blankets last night and we still would have welcomed another warm dog!!!

Chemo #5 has been rough going into the cycle; it could be that it runs through the rigors faster as well. Let’s hope that is the case. The mouth sores aren’t the big swollen sores, rather just mouth pain more generalized. I have a medication for this which makes the mouth numb, a very acceptable situation. It isn’t a cure, just a temporary treatment. The nausea is manageable except for the “metal mouth” syndrome, tasting metal with every burp or swallow. Knowing what  problems to expect helps….knowing the problems will end helps even more. I’m just impatient.

Back to the hot tea.

Chemo #5 is on board!!!

What a relief to be within 1 chemo infusion of the end!!! When this grueling chemo adventure started it felt like I was going to be drugged forever. And I wondered if/how I could endure it. Well, I did it because I had amazing support from husband, kids, family and amazing friends. When I needed encouragement some one just appeared with the right words or treats to keep me going. Thank you each and every one.

My blood values stayed up this cycle and my blood pressure was normal. I went into the infusion with some mouth sores so was anticipating more problems than happened. Carolyn was my escort and supervisor this infusion. She kept me provided with ice chips. Keeping ice chips in my mouth for an hour before, during, and after the red drug infusion has been a wonderful trick to chemo management. Post infusion I was tired and napped for a long time.

So far into the post infusion stage I’m just fatigued….to the max fatigued. Dr said that the chemo effects are cumulative and he is so right. I had to increase the nausea pills. There is no solution for the fatigue except an industrial strength nap with my sleeper helper. We are under an ice storm situation in North Texas so nothing is happening outside anyway. The electric was off part of the night so the house was chilling this morning. Domino snuggled up and slept in until 9 am. We had rolling black outs of electric all day. I was back in bed by 2 and slept until 5. And I accomplished nothing in between 9 and 2. Big day, huh?

It takes about 6 months to get strength back after chemo ends. Apparently there is a free resource for cancer patients that the Dr can refer me to. I hate exercise but I will have to do the drills to get back to travel mode. That will be my motivation. Where to go first???