Archive | Day to Day RSS feed for this section

What I would give for a cup of coffee . . .

11 Nov

I have not had coffee in about six months. Eliminating coffee was just part of my change towards a healthier diet. But then, after reading that it reduces the effectiveness of Herceptin (the mono-clonal antibody that kills the kind of cancer I have), well, let’s just say I was relieved about having eliminating caffeine a few months earlier. 

My oncologist never told me to avoid caffeine, and studies clearly indicate that regular use of caffeine makes Herceptin less effective. He still doesn’t tell his patient’s this even after I brought the UCLA study to his attention.

It is awful to see women coming into treatment  carrying some kind of Venti coffee drink. Granted, not all of the women treated there are getting herceptin,but some are . . . and doing so with caffeine in hand.

Anyway, of all the things I have given up to improve my diet and health – coffee has been the toughest. I used to make a cup of coffee early in the morning, take it to the park across from me and read the paper (and, of course my 15 year old puppy, Molly, would accompany me). Somehow taking the paper over to the park without a cup of coffee (and without my dog) just doesn’t have quite the same appeal.

I look forward r0  having a cup again at some point – probably in late May or June.  But, until then, I will just have to wait. It is no big deal really. But, today is one of thoe foggy mornings where a cup of coffee would be really nice. 🙂

Hair, eyelashes and eyebrows . . .

11 Nov

Enough of this talk about the radiation treatments (I am even boring myself).

For those of you that have not seen me in a while (and that is pretty much everyone), I should let you know that I am no longer bald and actually have a head of hair. It is not long, but it looks like a hair cut someone would choose (not this someone, mind you). But, it does look like a chosen hair style – sort of like Jaimie Lee Curtis (except not a silvery color). My eyebrows are back completely – although I never completely lost my eyebrows. And, my eyelashes are back as well. Thicker I think, but still growing (not quite as long as I remember them to be before the chemo).

The hair on my head started growing back after my fourth chemo. I am not sure why. But from what I understand it sometimes happens that way. Just like some women never lose their hair. Although, I am told with one of the chemo drugs that I had, you pretty much always lose your hair. I never really lost all of my hair on my head, but since I couldn’t stand it falling out all over the place, I buzzed it all off. So after I did that I noticed that right away it started to come back through in some places (so I guess if I had left it alone i would have had some hair, but it did not appeal to me to run around with bald spots, no thanks). Bald was far better. And, it really did not bother me to go out without a hat or scarf (except for the sun – that I could not do – have the summer sun on my bald head). I found it kind of empowering to go out bald. I rarely got a weird look from anyone and I just chose to smile at people and they pretty much always smiled back.

I will have to get some pictures up here of how I look now. Maybe I can do that over the weekend.

I still haven’t decided what to do about work. As I have  no idea how I will react to the radiation treatment, I don’t know what I will be able to do client wise. But, the radiation treatments will be over before the end of the year (assuming everything goes as planned). So that would mean I could go about business as usual (and in case you haven’t noticed – I have not, nor do I intend to make mention of the kind of work I do here on my blog – so please help me out and do not mention it either – the last thing I need is for my competitors – some of whom are not very nice people – using the fact that I HAD cancer to their advantage). And, I am sad to say that there are a few competitors out there who would do just that – disgusting as that is.

I have made some revisions to my business so that I can have a lot more flexibility – something I have been meaning to do for a long time. And, if I can stay awake long enough to work on it :), I will finish a book that I have been trying to get done for some time.  Otherwise, I am not sure what all I will be doing. But, I definitely plan on continuing to work. Just probably a scaled down version of things.

Well, it has probably been enough for one night/morning.

Please, please, please keep praying for me.

Thank you 🙂

Love, Lisa

Radiation: 2 down, 26 to go.

10 Nov

So today was my second radiation treatment. I am really impressed with the staff and clinicians at Hoag’s Radiation Oncology Department. I feel really lucky to be getting treatment there.

I slept fairly well last night, but was again, completely exhausted today. I attempted some work and fell asleep while I was at my computer. So, I decided to take a nap – since my body was deciding to do that for me anyway. I went to bed and slept from about 12:30 pm until 5:30 pm when a friend called and woke me up. It is good thing too as I have no idea when I would have gotten up otherwise. My Dad is here now with Chinese take out (no soy, of course for me) so I am going to go downstairs and join him for dinner. I am hoping we will take a walk after dinner and then it is probably back to bed for me.

My hope is that I will adjust to this treatment and be less tired. The pain – so far – is not terrible – just unpleasant. But, aloe vera helps a lot – at least in these early days. I am praying and hoping that this is manageable and that I become more “with it” so to speak. I have been pretty out of it for the past few days.

Well, wish me luck in the coming days.

Thank you for your continued prayers.

Much love,

Lisa

Radiation Starts Monday . . . most likely . . .

6 Nov

So today I go into Hoag for a “radiation simulation” – sort of a practice run I guess. Actually, it is pretty high tech (for which I am glad). Wednesday I went in for a CT Scan so that the doctor could make marks for where beams of radiation should go so as to miss as much of my lung as possible while at the same time radiate the areas needed. This is what the CT scan was for – to create a map of my chest so that the radiation will radiate my remaining breast tissue, the chest wall and lymph nodes above my breast (all of this is on the right side where I HAD cancer). There is no indication that the lymph nodes to be radiated have cancer. However, studies show that radiation after mastectomy reduces the rate of recurrence of breast cancer in the same breast (recurrence of cancer is most often in the same breast that had cancer originally).

I will also get tattooed today. So two things I never would have done in my life time: get breast implants or a tattoo. 🙂 The tattoos will be freckle like in size – so these will hardly qualify as a real tattoo. Still, that is what they told me – that they were going to tattoo me today. The tattoos will be used to line up beams and things like that so that the treatment is to the right area each time. who knows, maybe it will be in the pattern of some part of a constellation like ursa major or minor – maybe the big dipper or little dipper. I will have to use my imagination to come up with some kind of connect the dots. Maybe this isn’t funny at all. But, I don’t know how else to look at it today.

I know I am not going to enjoy the experience and I know it will be uncomfortable. But, it is the coming weeks that cause me the most anxiety – going in everyday with the intent to burn the skin so as to kill any possible microscopic cancer cells lurking about waiting to grow into something again. I know it is the right thing to do, but, I am not looking forward to the pain and discomfort that lies ahead. Still, I am choosing to expect the best, the least amount of pain and the least amount of fatigue from this treatment.

Another aspect of today will be to see if the mold they made for my right arm to make a thing for my right arm to go into , works. It will serve two purposes: 1) to keep my arm in the same position each time I have treatment and 2) to protect my arm from being radiated.

So today we will check these things all out and assuming everything fits and matches up, then my first radiation treatment will be this Monday.

Wednesday I saw one of my surgeons and she removed the pick line out of my arm. It is soooooo nice to go to bed and not be constantly wakened by snagging it into blankets or just bumping it into my side. It was quite annoying. it was not the end of the world, but still, I am very relieved that I do not have to deal with it now.

Well, wish me luck today.

Thank you for your continued prayers and positive thoughts coming my way.

Hoping for Blue Skies Ahead

5 Nov

Last night was a rough night. I woke up at 2:00 am in a lot of pain and there seems to be very little that can be done about it. The pain is less severe right now. But, it still is preventing me from doing a lot. And, this, my one day this week that I do not have the interruption of a doctor’s appointment. Tomorrow I have two appointments.

Anyway, enough on that. I am trying to get back to work. Oddly enough, I worked full time during chemo (the time I was told would be the worst and most difficult of this whole process). Instead, it has been post surgery that has been most difficult. I guess my immune system being shot down by the chemo prior to surgery didn’t help matters. So, hopefully I am on the mend.

I have a radiation “simulation” appointment tomorrow – where they calibrate the machine with measurements taken earlier this week via a CT scan of the area to be radiated. Then I am supposed to start radiation on Monday.

Please say prayers for me on all of that.

I miss everyone and hope to see you all soon.

Lisa

IV Pole in my living room . . .

2 Nov

Well, it was fitting for Halloween I guess – that I had an IV pole in my living room. But, it is weird to have it here in my living room. I presumed that once the IV antibiotics are over with that the nursing outfit/home care provider would be packing it up and taking it away. But nope, I am supposed to throw it out. I will gladly do this as I really do not like the hospital like atmosphere that it lends. But, I can not believe that they do not recycle these things. Maybe I can recycle it somewhere. It appears to be mostly aluminum.

I had a really good weekend. I am getting stronger, walking more and getting outdoors . . . all good things for me to be doing. And, I have had great company, so what more could I really ask for.

The IV pole goes sometime next week – they have added an additional five days of IV antibiotics for good measure I guess – and then I will be free of this pick line thing. My doctor wants to see me on Wednesday to make sure the infection is gone and that it is safe to take the pick line out. It will be a relief.

I was supposed to start radiation this coming Wednesday, but that was postponed. Now the plan is to start a week from this Monday.

I saw my reconstruction surgeon this past week and she ordered that I be on the IV antibiotics a bit longer and then she decided to do one more expansion. I was surprised by this because she said we were done with the expansions. But, she did one more on just one side. It was quite a day Thursday – I had the antibiotic treatment in the am at home. then I was off to my next medical appointment for the Herceptin treatment (a 90 minute infusion that I get every 21 days, it is not that bad actually, but makes me pretty tired), then it was off to see my reconstruction surgeon supposedly just for a post hospital check up on the infection that I had (hopefully it is had) and instead out came the saline and on came the pain. Since I had been told there would be no more expansions I did not take any pain medication before hand. What a difference that makes. Ouch.  But, I am now promised that this was the last expansion – no more. Woo-hoo. It was just a lot for one day – it began at 9:30 am and then I was home at 5:30 pm.

I really like both of my surgeons. And this one is really excellent. And, so while I was not expecting to be expanded again, I trust her that it was the right thing to do.

So, tomorrow is another week and it is chock full of medical appointments. I have one day free – without a trip to a doctor – and that day is Thursday.

I am still not driving, but should be pretty soon (so I am told). So now I have to coordinate transportation to and from all of these appointments. Like I have said before, it really does seem – sometimes – like a full time job. But, it always seems to work out. So, I am hoping for the same this week.

Thank you all for our continued prayers. I am grateful for every prayer and positive thought sent my way.

Hey la, hey la my blog is back!

28 Oct

Well, my last post was about six weeks ago. It has been a while. I have missed writing here. There have been several reasons I did not write – pain, depression from having nearly constant pain, fear of dying, fear of burdening those that I love, and fear that my anonymity might have been compromised. My mom always told me I did not have much of a poker face. Well, I guess, I don’t have a poker writing ability either – if that makes any sense. If I am in pain or feeling down, well, then I can’t mask that very well. And, I really don’t want to focus on the negative. So that is part of the reason why I have been “away” so to speak. The past month and a half has been a bit of a struggle. But, that is not to say that there has not been joy in my life. I think that the most challenging thing I have experienced in the past six weeks was simply nearly constant pain.

But, like I said I do not want to focus on the negative and more importantly, right now I am feeling better and mostly that is in my attitude. It is, as I have found out, hard to maintain a positive attitude when you are in pain. I guess that is why my doctors – on top of the pain medications – have continually pushed anti-depressants. But, I have not gone that route. I just don’t feel I can. I have enough meds that I have had no choice in subjecting my body to – chemo for instance. Why add another drug to go through my kidneys, my liver etc. Nope. And someone please explain to me what is wrong with crying or feeling down from time to time. Why must we numb that away?

It is one of the ugly sides of cancer – those bad days. And, I would never in a million years be critical of someone taking anti-depressants because they were going through this illness or any other serious illness or for depression. But, it is (at least so far) not for me. I don’t want to be sad, but sometimes I am. I don’t want to cry, but sometimes I do. I don’t see anything wrong with that, except that I would like for it to happen less and I am sure that it will.

So, I owe some of you an apology – those of you that have relied on my blog as a way to know how I am doing –  I am sorry for not writing here. But, it was not very feasible.

But, I am back! And I feel better despite the fact that I was recently in the hospital again for some kind of infection. This is the second hospital stay since my surgery. And, it has delayed my treatment and slowed my recovery overall. But, I feel stronger right now than I did this morning and the day before and the day before that. So that is very good.

I have had so much work to do, some days two or three different medical appointments a day and some weeks a medical appointment nearly every day. So, that is another reason I have not written here, this cancer thing can be it’s own full time job some times). I have radiation treatment (this has been delayed by a couple of hospital stays). I have to get it started to get it over with . . . and I SO want it over with. But, I could not start the radiation until I was able to get my arm into a particular position. So I have been doing physical therapy to make that happen. I met with my radiologist yesterday and he says I am there. So woo-hoo! I will be starting radiation treatments next week. This will be daily and will be about 15 minutes each day.

So I was in the hospital over labor day weekend and that kind of broke my spirits a bit. The reason being that I came home feeling worse than before, and so very weak. It was a real set back for me mentally and a major reason I stopped writing here. Then I had this most recent hospital stay – last week. But, this time it was different, even though I was sick I was still stronger than the last time I was there – by far. And, now I am home, for which I am so grateful. It was a little scary as an infection developed on my left breast (or, as I affectionately call my  left: “boob like structure” – sorry if that sounds crude, but, this is all so bizarre to me). I look good in a t shirt, no one would ever know that I had a mastectomy (although they might think I had some kind of breast augmentation – something I would never in a million years have done to myself). 

Anyway, with this most recent hospital stay, I was only in the hospital a couple of days. I was sent home with IV antibiotics – so a nurse comes here to my home each day and administers antibiotics through a pick (not sure of spelling – pic or pick) line each day. This will be over soon too, just a few more days I think.

And, the pain I have had is lessening. Ever since my surgery back in August I have had nearly weekly “expansions”.  This is where my reconstruction surgeon injects saline into an expander that is located under my pectoral muscle. Eventually, the expanders will be switched to implants. Since I was a chemo patient prior to surgery, my immune system at the surgery point was suppressed due to the chemo. As a result, my surgeon has done the expansion slowly (a certain amount of ccs of saline each week). Since the expanders are underneath my pectoral muscle – the muscle is stretched each week. This is why I have been in so much pain – stretching that muscle out where it was never intended to go. Well, now we are finally done with the expansion part of the reconstruction. If you are going through radiation, it is important to go to someone (as I have) who specializes in reconstruction after radiation.

Anyway, I think I have rambled on quite a bit here, so I will sign off for now. I apologize for how this posting may seem a bit disjointed or discombobulated (is that really a word?). I have written it in pieces – a little here and a little there – as I have felt up to it – trying my best to catch you all up on the past month and a half.

Thank you to all of you who are praying for me and helping me, I could not do this without you.

I will write again very soon and will try to keep my future posts more brief!

Much love, Lisa

Need a favor

9 Sep

This Thursday I need a ride to a doctor’s appointment. It is in the afternoon and is across the street from Hoag Hospital in Newport Beach. Believe it or not, this doctor is NOT one of those doctor’s that keeps you waiting. She has always been on time for me. So my point is that historically a trip to her office is not an all day affair. She actually sees me on time. Anyway, I hate to ask, but I am still not allowed to drive yet after my surgery. Aaargh.

I really do try to arrange for these things in advance, but last week I was sick and ended up admitted to the hospital over Labor day weekend. I was released yesterday and am kind of just now feeling up to taking care of some necessities like trying to figure out transportation to doctor’s appointments.

Obviously I am only asking this favor from people I already know (so please do not volunteer if we are strangers).

If you think you can do it, either call me on my cell or email me at my personal email – lisa plus my last name @yahoo.com (no spaces, just my first and last name at yahoo.com) or if you want to, go ahead and make a comment here.

Thank you so much.

Love,Lisa

Last week was rough

4 Sep

I don’t want to dwell on it, but last week was a hard one. A lot of pain and just all the things that go along with that – being worn out from it, not able to get around etc. It was a drag. But, I saw my reconstruction surgeon yesterday and she said I am healing well. She did the first expansion since my surgery, so I have more chest today than two days ago, It is kind of amazing really. But, because it is stretching skin and muscle, it does cause some pain. But, it was not so bad. The real disappointment was that it set me back mobility wise quite a bit with my arms. I am back to  not being able to pick things up  s0 easily. And, because I have to be back on the pain pills, I am not clear headed either. So very tired.

I will posts more later when I have had some rest.

Please continue to keep me in my prayers and know that your comments here and emails mean a great deal to me.

Love, Lisa

back on pain meds

3 Sep

Well, I don’t know if it was skipping the pain meds for the day on Tuesday (which my surgeon approved me to do) or what, but, I was in so much pain on ‘Tuesday night I thought that I would not make it through it. Thank God for my dear friend who came to the rescue and got me back on my pain meds and kept me on them throughout the night and day (waking me up at 2 am to take a pill etc.)

Once there is that much pain I really can not think straight or take care of myself. I don’t know. I was told that the surgery and recovery from surgery would be so much easier than chemo. But, that has not been my experience. I presume it has something to do with the weakened state you are in post chemo and that having surgry right after chemo makes it a bit slower recovery time. But, all I know is that I thought I would be a lot further along by now. It’s a struggle right now to stay awake to write this post and you can be sure that I will be going rt back to bed as soon as I am done.

I have an appointment with my reconstruction surgeon today (I see her every week right now). She plans on “expanding” me today (please see prior posts for what this is, I am way too tired to explain it right now). Basically she will be adding saline to the expanders that were put in under my pectoral muscles during surgery. After she has expanded me to a size that I like then she will be able to exchange the expanders for silicon implants. It is a process. But, the very exciting part about it is that I will have a chest (even already have one, but just not a whole lot until she does more expansion – the first of which is today). It is so amazing really. There is – so far no detectable scarring the way everything is healing. Unbelievable.

But, all of that stuff above is really kind of not important to me. I mean, sure on some level it is, of course – to be able to come out of this with natural looking and actually beautiful breasts (so my reconstruction surgeon brags to me every time I see her . . .  ” You have great skin, I am so excited to be doing your reconstruction”.  Yeah, raw, boo . . . it’s all great, but I am just soooo tired and really all I care about is surviving. You know what I would like to have one of my doctors bragging to me about – is how I am going to survive this no problem – – how when all of this surgery crap is over with and treatment, that I am going to be 100% fine. That is what I want an oncologist to brag to me about! I have to say that the pain has definitely affected my overall mood – – the pain has been depressing me quite a bit. So hopefully the pain will get under control pretty soon so I can start getting back into things a bit more.

Well, I am going to take a nap and gear up for my appointment with my surgeon – hopefully she will still think that everything looks good and hopefully the expansion won’t hurt too much.

Oh wait a minute, I left out the most important thing! I have an appointment with Dr. Hurvitz, the breast cancer surgical oncologist specialist up at UCLA on September 11. I am a bit nervous, but I am mostly thrilled to be able to see her as she is so good.

Okay, nap time.

Please continue to keep me in your prayers.

Love,

Lisa