Archive | June, 2009

Chemo Round # 5

29 Jun

Hello All,

I know it has been a while since I last posted.  The lack of posting was due to having a pretty difficult time for a while (there definitely is a cumulative aspect to these chemos).  And then, when I was finally feeling better, it was about just trying to get as much done to be ready for the next chemo round. Fortunately everything came together in time.  Thank you to everyone who made that possible for me.  I am so grateful.

I completed my fifth chemo round this past Thursday.  It hit early and I had new symptoms this time.  My veins are getting tired and so am I 🙂  But, I am getting through it.  I am feeling better today than yesterday and will feel better tomorrow than today.  That is something to certainly look forward to.

The current plan right now is that I will have my sixth chemo round on July 16th.  Then I will likely have surgery (a bilateral mastectomy) the first week of August.  The recovery time will be about 4 to 6 weeks.  So, I will be gearing up for that soon.  I have opted to have a bi-lateral mastectomy for preventive reasons.  My cancer is in my right breast and not in my left breast.  However, the risk of recurrence is high with the type of cancer that I have.  So, I am doing everything I can to reduce that risk.  Surgery is just one of the ways to reduce the risk of recurrence.  Diet and, in particular, exercise, can dramatically reduce the risk of recurrence of this disease.  I am not running any marathons today.  But, I will get out for a few walks as soon as I am able.  And, I will get back into the gym within the week.

Please continue to keep me in your thoughts and prayers as I do battle.  Your support, prayers, friendship, thoughtfulness all play a significant role in my survival and my well being.  In a few days I will post an article here about breast cancer survival – studies have shown that breast cancer patients with moderately severe breast cancer (stage 2) have a 60% greater chance of survival when they have support of friends and family.  It completely makes sense I guess, but it is also remarkable to read (at least it was for me).

I love you all and look forward to many, many, many healthy years ahead.

Lisa

On the other side

13 Jun

Phew, well, I think I am past this last one (as in past this last chemo round).  I’m not a hundred percent over it, but I am feeling much more like my usual self. Such a relief.  

And, I “dealt” with my oncologist a little bit today.  After talking to my brother Steve about my last appointment I decided to take his approach.  If you have read my previous post, my last meeting with my oncologist was very disappointing. It was clear that he had not prepared in any way for our meeting.  I have a business and I have clients – none of whom are facing life and death situations, mind you – but, when I meet with a client of mine I ALWAYS review their file and prepare for meeting with them.  Anyway, I digress.

So, my brother told me that if it were him, he would have gotten up and walked out after telling the doctor that next time he had better prepare for the meeting. And, he said (my brother) that he would not pay for that visit.  My brother pointed out that my doctor works for me, is paid by me etc.   So, I called the office today and unleashed a little bit (have to say that felt pretty good).  I told them that I was considering going to UCLA for my remaining treatment (which I am considering doing) and that unless I had a very different experience very soon, that I would be doing just that. I don’t know if it will make any difference. But, I do know that I am not going to let my doctor get away with that kind of laziness again.

I realize that part of why I am getting this sort of “brush off” kind of treatment when I meet with my oncologist is because I am doing so well.  So I am not really a priority I think.  I look well, my blood work is very good, I do not have a lot of the problems that many chemo patients have like anemia and low white counts and infections. But, all of this is because I am working very hard to make sure of that.  I follow a very careful diet, I exercise (this really helps stave off anemia) – I am just doing everything I can to try to compliment my chemotherapy and be the best patient that I can be.  And, I guess I just expect my doctor to meet me halfway.

In any case, I am going to go back to UCLA (where I sought my second opinion) and have the specialist there review my case again (now that there is new information, the treatment is working etc.).  And, whether I ultimately switch to UCLA, I am going to just see this specialist there every 3 or 4 weeks – pay for it – and get the peace of mind that I need.  It is worth it. The specialist at UCLA is a breast cancer surgical oncologist. So she deals specifically in my type of cancer. Not only that, she is just a different kind of doctor – she is invested in you when you are there.  At least that is how I felt.

So that is what is going on cancer wise.  I definitely feel better tonight and am on the mend for sure.

L.

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!

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Day before chemo round number four

3 Jun

I have my fourth chemo round tomorrow.  As a result, today I am taking pre-medications that I have to take the day before each chemo round.  I take steroids on the day before chemo and stay on the steroids for about four days after the chemo. Taking the steroids the day before and the day of is critical because it helps to suppress the body’s immune system.  This in turn allows your body to take the chemotherapy without causing infusion reactions (like the hideous reaction I had when I was told not to pre-medicate the day before chemotherapy – it was a mistake – and one that was nearly fatal as I went into anaphylactic shock, stopped breathing, bad, very bad).  So, the steroids are really important.

I still have reactions during the chemotherapy as I am pretty sensitive to the drugs that I am given. I have read also that once you have a reaction to the drugs, you are more prone to have reactions. However, they (my doctor and ESPECIALLY my nurse – thank God for her – are really keeping a watch on how much of the steroids I take – have increased the amount and also I am put on an awful lot of benadryl during the treatment day. And wow, the benadryl is given intravenously and really causes me to be immediately very tired).  But, I have to stay awake to watch for any symptoms from the chemo. These can come on fairly quickly and so my nurse needs to know right away so she can back down the infusion rate of the chemo or increase either the benadryl or steroid or stop the chemo infusion altogether to give my body a break. If the chemo is stopped, it is usually resumed as soon as my reactions subside.

So they really love me over there where I get my chemo.  I have to take the drugs very slowly and this makes for a long day for everyone.  I also have to have someone present with me during the entire chemo day so that if there is a problem they can alert one of the nurses. I am their problem child. This is complicated a little bit by the fact that Thursdays are very busy days there so the nursing staff is attending to a lot of patients. The afternoons however, pretty much everyone is gone (patients that is) because they only come in for about 3 1/2 to 4 hours, so there is a better nurse to patient ratio at that time.

Today I also have to get blood work done in a little bit so that my doctor can see this prior to my having chemo tomorrow and make sure that I am okay to have the next round. So far my blood work (CBC) has been really good (red blood cell counts good, white blood counts good and the same with everything else).

Well, I am still high on the great news of yesterday – that my cancer is responding really well to the treatment – that two of the tumors are no longer visible on my MRI.  So fantastic, I am so relieved.

Today is a busy work day, and again, without having much of any sleep at all.  I have got to get a handle on that. Sleeping is so important for my recovery.

Hopefully tomorrow will go well, no reactions, I am praying for that.

Just so you know, I probably won’t be writing here for the next several days as the chemo will put me out for a little while.

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More Great News!

3 Jun

I was able to speak with my surgeon today and she went over my MRI results in detail.  I knew that the results were good and that my cancer was shrinking.  But, now I have even better news.

Originally there were three small (millimeters in size) tumors in my right breast.  Now, after three chemo rounds, two of the tumors are no longer visible on the MRI.  In addition, the third tumor has lessened.  My doctors are thrilled, I am thrilled.

So now I have both fantastic news and also some answers.  I will be going ahead with the chemo and not interrupting the chemo to do surgery earlier.  This is great.  I am halfway done with the chemo now.  If all stays on track (I continue to tolerate the treatments and I am able to have each treatment as planned) my last chemo round will be on July 15th. Then I will have surgery about three to four weeks later.  My surgeon is thinking the first week of August for my surgery date.  

In the meantime, I still have to meet with more plastic surgeons to decide on the type of reconstruction and the timing of it. Fortunately, my surgeon is helping me in with plastic surgeons more quickly. I have met with one already, but she does not have a lot of experience with reconstruction after radiation. So I have been referred to a plastic surgeon who specializes in breast reconstruction after radiation. My insurance has not approved this yet (but, I am told that it will be approved).  Anyway, my surgeon is helping to facilitate that so I can meet with the plastic surgeon very soon and be closer to deciding which is the best type of reconstruction for me.

Anyway, it is so late right now, and I have to get some sleep.  But, I wanted to share this great news!  Please keep praying for me, it obviously it is working!

I will write more tomorrow

Sleepless in OC

2 Jun

I can’t seem to figure this out, this sleep thing.  I am so tired, yet I can’t sleep.  Last night I slept about 3 hours.  Worked a full day, but was falling asleep at my computer and now? Well, you’d think I would be passed out. But, no, I am still awake.  It seems I either get to sleep before 11:00 pm or I don’t get to sleep until after 3 or 4 am and no matter when I go to sleep I seem to wake by 6 or 6:30 am. In case you haven’t noticed, this posting is a whining session.

My surgeon and my oncologist will be “letting me know” whether they think I should complete the remaining chemotherapy now and then have surgery afterwards (which is my preference) OR, whether they think I should have the surgery now and then complete the remaining chemo rounds after surgery.  I do not want to do the latter.  First of all, I have not yet figured out what kind of reconstruction to do.  So, there is no way that I can be ready to have surgery right away.  I have met with only one plastic surgeon and she recommended I see someone else so that I could consider a newer type of breast reconstruction (one that she does not herself perform).  I am still waiting to hear whether my insurance will approve that referral.  Either way, I intend to go back up to UCLA’s Revlon Breast Cancer Center to discuss options.

So therein lies the root of my sleep issues this week.  Got fantastic news on Friday, but now that news leads to another decision to be made and I am just not certain that the decision is going to be mine to make.  It ought to be, it IS after all MY body.  

But, I get the distinct impression that my oncologist (as good as he is) will attempt to railroad me into his way.  As long as his way is what I want, I am fine.  But, I get the impression that he is inclined to send me to surgery first.  If he does this, well, I am flat out going to refuse it until I get a second opinion from UCLA. So, in the meantime, will they let me continue onto my fourth chemo round (while I take the time to seek a second opinion)?  Or will they postpone the fourth chemo round until I get a second opinion?  I have no answer for this and it probably does me no good to even think this way.

But, I am consumed by it sometimes.  And when that happens, I simply don’t sleep.

I do like my oncologist, but he is just that – an oncologist.  He is a cancer doctor – not a breast cancer doctor, or a breast cancer surgical oncologist – but simply an oncologist.  So he sees all kinds of cancers.  And, don’t get me wrong, he is great. He has a great reputation, won specialist of the year at Hoag Hospital, has been known to make house calls to his patients homes on occasion.  So, he is definitely a very good doctor. But, he does not deal in just breast cancer nor does he deal in just my type of breast cancer.

The doctor I consulted with at UCLA for a second opinion before deciding on a treatment plan, is a breast cancer, surgical oncologist.  She does not recommend interrupting the chemo to do surgery.  She was very clear that I complete all six chemo rounds, then have a breast MRI and then have surgery.

So, I am not to keen on the fact that my doctors who deal with all types of cancer (both my surgeon and mycologist) are even entertaining the idea interrupting the chemo with surgery and then completing the the chemo after surgery.

I know that part of my oncologists thinking was that he would not want me to go to surgery completely wiped out. He said he doesn’t know how I will do, that I might we worn out after four chemos and if so, we should stop and do the surgery and then do the remaining chemos after I recover from the surgery.

But, I am tolerating the chemo really well – at least so far. And, I have no intention of being wiped out by the next three. So far my blood counts are all in normal range, like someone who is not going through chemo. And, maybe I am being naive, but, I fully intend to keep it that way. Diet, exercise and My CHOOSING to stay well and fit and up to the chemo are what I believe will keep me strong enough to handle each round and to recover from each round.  

That probably does sound a bit naive. But, I saw my red blood cell count going down with the first two chemo rounds. It scared me. So, I decided I would bring it back up. I visualized that happening. I also exercised more between the 2nd and 3rd chemo rounds.  And, it did go back up and it is now in a normal, healthy range. There’s no explanation for why I would not rebound (with respect to my red blood cell count) with my first two chemos, but then suddenly my red blood cells go back up to a normal range.

So I will just do my best to keep it up and to wrestle – if necessary – my oncologist.  Hopefully we will be on the same page.

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