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Spoken a little too soon

11 Jun

My 4th chemo seemed pretty good at first, but am not recovering well.  I am trying to stay positive but it isn’t always so easy especially when there is pain. Saw oncologist today, was very frustrating – it was clear he had not read or reviewed my chart/file – I spent the whole time “catching him up” on what he should already know and correcting him (for example, he thought I had only had two chemo rounds, not the four that I have had – he even argued w me about the number of chemo rounds I have already had  – he finally realized I was correct, I guess that is good).  It is just frustrating to spend so much energy on preparing to see your doctor and then to realize he doesn’t even have a clue what is going on with you. Could he just maybe actually read my chart or file? Sorry to sound so grim, just having a rough time now. Haven’t slept much at all in the past three days, definitely a rougher go this time.  Will write more later.

Two thirds of the way done with chemo!!!

7 Jun

Well this time I am NOT writing at 4:30 am because I haven’t been able to sleep.  Instead, it is because I just woke up after sleeping for several hours, yeah! And, I am sure I will go back to sleep soon.  I just wanted to take a moment to let you know how this chemo round was going.

It has gone well.  First of all, I have had excellent care takers  for each round of chemo (I could not do the days of chemo by myself, it’s just too difficult to be on my own and so much easier to have someone staying with me).  So thank you to everyone who has been here this time and for the preceding rounds, I owe you so much. My family and friends have taught me from one round to the next that I need to let them do things for me and most of all, I have learned how much I am loved. I am so grateful. The peace of mind that comes from knowing that I am not here alone – that someone is in the next bedroom or downstairs if I need anything, well I can not even begin to express my gratitude.

This chemo round has by far been the easiest. I am not out of it yet, but I feel better than I have in any of the preceding chemo rounds. Which is really kind of amazing. I still have symptoms, and I can definitely still feel it when the chemo hits (which is Saturday morning usually). But, it is much more manageable. And I have gotten used to the fact that that I just have to give into it and ride it out. I do get better and I do eventually resume my “normal routine”.

One of the hardest things about it is not the pain or other symptoms associated with the chemo, but, instead, the inability to do some of the simplest things.  So, rather than try to do these simple tasks and be frustrated that I can not do them, I have someone here do it for me. I have to admit, that at first (especially since I didn’t know I would not be able to open a bottle of water by myself, or simply turn the rod on my blinds to close them or grasp something without dropping it, or just make a bowl of cereal for myself – it is amazing how by mid day on Saturday, I can sometimes no longer pick up a bowl and make some cereal without it involving pain or simply risking dropping it) it was embarrassing to ask someone for help. But, now I know that once the chemo hits, I have to have help with these things.  And, thankfully, I have a wonderful group of friends and family who have come to my rescue. There are shifts so that I am never left alone during the days I am at my worst. I am so grateful for everyone’s help, I could NOT get through this alone.

So, how I am doing: considering everything, I am doing great! The chemo round went an hour shorter this time, so that was some improvement. I have taken as many as 9 to 10 hours to get in and out of there.  This time was the shortest – 8.  It made a big difference lobbing off that extra hour or two. My nurse started me even slower (infusion rate that is) and instead of that causing me to take longer to get all of the lovely chemo drugs into my system, it seemed to make it so that she could gradually speed up the rate without so many symptoms.  All in all, it went well.

My chemo rounds are always on Thursdays. The day after chemo, I come in for a shot of Neulasta. This shot causes my bone marrow to produce white blood cells (something the chemo causes to suppress the production of).  The down side of the Neulasta is that it causes me pretty severe bone pain – or at least it did.  Amazingly enough, once I switched to my new oncologist, he changed my medications (increased the pre-medications, increased the number of days that I take steroids – this lessens swelling and pain as well – and he suggested that I take Claritin to help with the pain and unbelievably it worked).  I still have pain, but nothing like before and it is tolerable.

I walked a mile on Saturday afternoon. I could not have gone on that walk with out my neighbor going with me (nor could my dog have joined me as I can’t walk her during this time – can’t handle the leash, grasping it and hanging onto her, despite her small size).  I had also gone for a shorter walk in the morning with my friend who stayed the night with me Friday through Saturday. Excercise is so important and I really improve during the chemo days when I am able to get it.  But, the mile proved to be a bit too much as Sunday I was a bit worse off. It is really important to get exercise during the chemo (not too much during the actual days of chemo, just walking).  But, the exercise thing is so key.  I am not anemic – yet – and hope to never get that way with these treatments.  Studies with women who undergo chemotherapy for breast cancer who exercised throughout their treatment had a reduced rate of anemia (the anemia caused by a reduction in red blood cell counts, this is what makes chemo patients so incredibly fatigued).  The doctor’s up at UCLA all say to get exercise, that it improves your immune system and reduces anemia.  So, that’s what I am doing and so far it has kept me right side up.

But, I did do a little too much on that longer walk yesterday.

Well, it’s back to bed for me.   My parents are here with me tonight and then tomorrow it is back to some light work from home.  But, my power cord on my Mac (or maybe it is the battery on my Mac) has suddenly gone bad.  So, working from my bed (which I enjoy when I am up to it and NEED to be able to do – as much for sanity as finances) is not an option tomorrow. I would just go and buy another power cord, but don’t know whether it is the cord or the battery.  Aaargh.  I will have to find a friend with a matching cord to test it out I guess.

Please forgive my slow return on calls this week, after Chemo on Thursdays it can be a bit rough to take calls, make calls, write emails etc.  I so appreciate the support though, so please don’t stop praying for me, calling and checking in with me.  It is NEVER a bother and it is always appreciated.

Love to you all!