Archive | June, 2010

Places to visit and things to do . . . much to do . . .

9 Jun

I am doing better these days. It is now just a little over three weeks from surgery. I am still not really doing much of anything other than tending to the absolute necessities – which is pretty minimal. Most days I have a doctor’s appointment. And everyday a nurse comes in still to administer the IV antibiotics (hopefully there will only be a few more days of this). Although, I have had some really nice conversations with a few of the nurses, two in particular. Both love to travel and have traveled extensively. So, I have very much enjoyed talking with them and hearing about their past and planned travels.

As these women discussed past travels, trips these women had taken – some to places that I had been and places I would like to go (based upon their descriptions) it made me reflect upon some of the wonderful experiences I have had . . . like going to the Kroller Muller Museum in Otterlo, Netherlands (Holland). The Kroller Muller Museum is in the middle of a national park and it holds the second largest (I believe it is the second largest) collection of Van Gogh. One of the most moving experiences I have ever had was standing in one of many rooms of Van Gogh’s work, displayed against purple walls, all of those yellow and golds in his paintings, it is simply breathtaking there.

This museum is definitely worth a trip to . . . unlike some more famous museums in Europe, there are no lines, no crowds and you can walk right up to his work (and there are other artists’s works as well – but, the most notable to me, anyway, was the Van Gogh collection). Helene Kroller Muller acquired 91 of Van Gogh’s paintings and collected 175 of his drawings as well.

Here is something Helene Kroller Muller had to say about art and about Vincent van Gogh’s work in 1933:

“Part of the intention of forming this collection was to show – to prove – that abstract art is not something insurmountable but that it has always existed. That is why you find new and older works here side by side. I meant to use the old to support the right of the new to exist.” (I like that).

And about Vincent van Gogh, whose works comprise of her collection, “His value lies not in his means of expression, his technique, but in his great and new humanity. He created modern Expressionism.”

I can tell you though, that standing in front of glorious painting after painting and looking at those brush strokes, (knowing that if I could touch it, I would be able to feel each stroke, almost like a wood cutting, but, with such intense color), that expression flowed right from his canvas and into my heart. What a wonderful experience it was to see his work. So moving. Some of it so very sad, the potato farmers – not bright golds and yellows there. But, perhaps that is one of the things that I found so compelling about the collection of his work – the incredible range of human experience – from the worst depths, sheer suffering to the brightest sunflower standing tall on a warm and sunny day.

You witness that full spectrum all there in one place. Truly a wonderful museum. I would love to take my Mom there some day.

Thinking about that today, urging my nurse to make her way from her planned trip to Amsterdam this summer to the Kroller Muller Museum – as it is so worth the trip, made me think about traveling, about making plans, about having my life back and about giving back.

I am grateful that I have traveled some. And, I really hope to travel more. But, of course, one never knows what lies ahead. And, so, today, I am just grateful that I have these places to think of, to hopefully return to and new places to hopefully discover.

This past year plus has been a different kind of journey and time of discovery – I have discovered new places within myself that I never thought existed – both good and bad. And, my friends and family, what can I say, I have reaped such strength and joy from you. I have seen my own kind of despair and definitely seen some beautiful sunflowers.

Here’s to more sunflowers . . .

Love and peace,

Lisa

Great news . . .

7 Jun

Saw my surgeon today – she took out the last drain – YAY!!! Such a relief, those things are so uncomfortable. Anyway, she says I am healing well, things look good (and they do, or rather I should say “it” does look good – since I have one newly reconstructed breast now). Although, there are minor things she will do, it is quite apparent now that she does excellent work.

Also, my surgeon’s bedside manner has improved (hopefully permanently). Today it was like being with a totally different doctor. I have a feeling I know why. She was on vacation last week. So I asked her how her vacation went and she explained that it had not been a vacation or time off. That instead, she went to look after a good friend who had very bad thyroid cancer. I believe that my surgeon went to visit her friend while she was going through her staging exams (CT Scans and MRIs that they put you through to determine if the cancer has spread to other areas of your body – a very scary time in a cancer patient’s life).

My surgeon said it was just really hard for her friend and that it was such a difficult time. And then she said to me, “Well, you know . . . you know what that is like.”

Yes, I do. But, now, I think my surgeon has an idea of what it is like and suddenly has a totally different perspective on what her patients have to suffer through.

I am very sorry for how she has had to gain that perspective, but, hopefully her friend will be fine. I know that thyroid cancer is very treatable. But, like with all types of cancers, the key is early detection. So, hopefully her friend’s cancer was detected early enough. I will say some prayers for her.

I don’t know if that is why my surgeon was so much better towards me today. But, I have a feeling it might have had something to do with it. It certainly felt like she had empathy for me – and it really is the first time that I have ever felt that from her before.

So, to recap, the great news is that my drain is out (this will surely make sleeping more likely) and I appear to be healing well from surgery. My surgeon does want me to stay on the IV antibiotics a bit longer, but, my other doctor will likely have the final say on that. So, I anticipate that I will be free from the IV line nonsense this Wednesday or Thursday. I hope so. In any case, things are improving.

Thank you for your continued prayers, I greatly appreciate it.

Much love,

Lisa

My apologies . . .

7 Jun

Hello All,

I just wanted to thank those of you who have sent emails and commented on my blog and . . . apologize if I have not yet responded. This post surgery time is pretty grueling – although MUCH, MUCH better now. But, I have not yet even begun to catch up on email. Your emails mean so much! It really helps me get through this, so thank you, thank you, thank you!!!

I will get back to you as soon as I can.

Today is all about getting to the doctor’s (I have secured a ride there, so now it is about figuring out my questions and simply getting dressed to go – a slow process these days, getting dressed that is, but, it is getting easier).

I will probably make a trip to the grocery store on the way home from my doctor’s appointment. After that, I will be pretty much spent for the day.

But, please know that your thoughts, prayers, messages, cards are not forgotten and that they mean so much to me. I promise I will get back to you individually as soon as I am a little further along in my recuperation.

Thank you all so much.

Much love,

Lisa

So tired . . . of all of this . . .

7 Jun

Hello All,

I am now three weeks out from surgery. Kind of hard to believe. I am so grateful to be three weeks out, and not the first week or the second (which were their own particular kind of hell). I am definitely getting better – the most marked difference is in the pain department. While I am not pain-free, it is a level I can tolerate.

Today I will see my surgeon for the first time in a few weeks (she was on vacation last week – so I saw her partner instead – I like him a lot, wish he could be my surgeon – appreciate that he gives out straight answers and doesn’t get defensive or feel the need to apologize for what he is about to say – he’s up front, direct – – what I would give to have that from my surgeon, oh well, I digress). So i see my surgeon today. I believe she will take out the one remaining drain (after surgeries sometimes drains are put in to help your body to drain blood, fluid and tissue away from the surgical site – I know, kind of gross, but, that is what it is). These drains help your body deal with that stuff so that your body doesn’t have to absorb it.

Anyway, I had just two drains with this surgery (I had expected more, since there were four incision sites. One drain was removed last week and the last drain may come out today. I should probably leave these details (and others I will spare you from now) for a “for cancer patients” blog. I would have really appreciated knowing more about all of this stuff, (how you have to maintain it as a patient, etc) before my first surgery. Instead, you get a one page handout that shows a line drawing of something called a “Jackson Pratt” drain. Not very helpful – doesn’t prepare you at all.

So, I am very tired. This weekend was a long one for me. My Mom, who is getting better, has had some kind of flu bug (she has promised me she is going to call her doctor today – she’s been quite stubborn about getting over this on her own). Anyway, as a result, I haven’t allowed my Mom or my Dad to come over for several days now. Mainly, i want my Mom to get rest (something she does not get here as she is always doing something for me). But, also, I should not risk being around anyone who is sick. And, even though my Dad is not sick, he has been around her, so he could potentially give me what my Mom has. I doubt it. But, I have to say, it is putting some pressure on my Mom to actually go into the doctor (since I keep telling her that she can not come see me). I am not trying to be mean, I am just concerned about her – I want her to get checked out by the doctor and I also do need to be pretty cautious myself.

But, since they have not been here for several days I got low on groceries (I can’t yet drive to the store, so my parents usually go for me or take me there). Anyway, a friend of mine took me last week and now I need to go again. I have a doctor’s appointment today and should be able to make a stop on the way home to pick up some groceries.

I am just so incredibly tired of having to rely on everyone for so much. I had no idea going into this thing (not to suggest that I had a choice of going into it or not :)) that it would be this long a period of time – needing to rely on people for so much. It is unimaginable. And, the thing is I’ll have a little stretch where I am pretty good and can fend for myself, then surgery and I am right back to being useless.

I am, however, getting better. I still can’t drive, probably at least a few weeks more of that – very frustrating. Although, I am so physically tired and my arms are still so limited I would not want to drive right now. But, you understand, I just wish that I could drive, and, I especially wish that I felt well enough to drive.

I am getting better, just really tired of this whole thing, so worn out from the past 15 months and really hoping to get a break from all of this sometime soon. I know I still have the next surgery (same one that I just had) ahead of me, which is fairly major. But, I really hope to feel well in between this surgery and the next. And, then, after the next surgery I just pray that this will all be behind me. No more cancer, no more surgeries, no more feeling like this. I want my life back so badly. And, I hate to admit it, but, I can understand why people stop treatment because at some point your quality of life is just not there anymore and you can’t do it anymore. So I pray that I will be one of the lucky ones and that I will be clear of cancer.

Once I have the second surgery I will be able to have a brain MRI (something my oncologist wanted me to have last month – but, I couldn’t because there is metal in the expanders in my chest). So, after I have the second surgery (one expander was taken out in the surgery I had three weeks ago and replaced with an implant) I will no longer have any metal in my chest and so i can proceed with the brain MRI. That is when I will know with more certainty about whether I am cancer free. So there is some pressure to have that second surgery as soon as possible in order to get the brain MRI done. But, I think I have to wait at least 3 months between the surgery I just had and the next one. I will find out more about that when I meet with my surgeon today.

Well, what a ramble this has been.

Please continue to keep me in your prayers, I need it and I greatly appreciate it.

Much love,

Lisa

Less pain now . . .

6 Jun

Hello All,

I am now two weeks and 6 days post-op. I guess I am actually doing pretty well considering it has only been a few weeks since surgery.

I am starting to feel better. I know I have really taken to complaining on here lately – that can’t be too pleasant to read about. But, I wanted to capture my symptoms because I have to have this same surgery again and want to be able to be better prepared for the next one. Plus, I do want a record of this for others who have to go through it. (Since doctors don’t, they REALLY, REALLY don’t fill you in on what is really coming). At least that has been my experience.

So, I am slowly recovering. Still having some pain, but, nothing like before. It is hard to imagine having to have this same surgery again. But, it is what it is. I will do it and I will get through it. Hopefully next time with better preparation. I can say this, if the surgeon changes the date on me the next time at the last minute, then I will NOT go forward with surgery – not until I have time to adequately prepare (as in line up care takers, re-do grocery shopping and laundry and all of the stuff that you have to do to have a house ready for recuperation).

I won’t be able to drive for another two or three weeks. Not that I feel like driving right now anyway.

The pain is lessening. I am still weak, but, not as much I guess. Although it is hard to gauge as I really don’t do anything. Yesterday I went out briefly with a friend for lunch and I found myself pretty upside down after walking from the car to the restaurant. (I am entitled to a handicap card, but, just can’t really get my head around that one).

So, I have been pretty much just at home, taking it easy. I need to start walking more, but, I really can’t do it alone, not wise. So, I need walkers . . . pretty pathetic, I know.

My folks should be by later today, it will be nice to see them. I am sure I will get a walk in then.

Still on the IV antibiotics. Nurse comes in everyday to administer it. Can’t wait for that to be over with, really hate having this pic line in my arm. But, it is a lot better than developing some infection. So, in the scheme of things, it is not that bad.

I hopefully will be off of the antibiotics after Wednesday (that would be my third week of it and that is a lot, not really so great for a person to be on this stuff for so long).

I see my surgeon tomorrow. Hopefully, she will remove the remaining drain – that will help with the sleep issues I am having.

I am sleeping more than I was last week. And, I know I will sleep more and more once I am feeling better.

Well, that’s all really, just wanted to check in.

Please keep up the prayers and positive thoughts. I really appreciate it.

Love and peace,

Lisa

Corner turned . . .

3 Jun

What a difference a day makes. Last night still did not bring any sleep. BUT, I did get through my first night post-op without pain medications! Still haven’t taken any today. So, this is real progress.

I’m not saying I am pain free, but, the pain level is low enough that I can tolerate it. The pain medications cause side effects that are pretty intolerable – clearly you have to do it if you have to do it. But, I am so glad to be able to get by without, or at least less, pain meds.

Today I saw my “infectious disease doctor” – sounds pretty bad, I know 🙂 It isn’t. He is great and the reason I see him at all is to make sure that I don’t end up with some infection post surgery. This is why I am on the IV antibiotics right now. He ordered another week of the antibiotics – which means another week with the pic line (blech). But, I prefer his caution to risking getting some infection that could jeopardize the whole surgery and even worse, my life. Hoag Hospital has had a high rate of MRSA infections (higher than what is thought to be within normal range) in the past 6 months (a little detail I found out about after being admitted to the hospital, nice). Anyway, I guess they have had people come in without the infection but, leave with it or develop it within a few weeks of being hospitalized.

So, all of this is just a precaution to help make sure I heal well.

I can’t wait to have the remaining drain out and for the pic line (the thing in my arm that allows them to give me the IV antibiotics through) out!

I had a really nice walk with my friend Sandy today. Sandy drove me to my medical appointment. We took PCH back home and she suggested that we stop at the bird preserve along PCH. It was so great to get some fresh air, feel the ocean breeze and see some birds and water. It is really a beautiful place – great idea Sandy, thank you!

So, things are getting better, definitely. And, my Mom seems to be feeling a little better. Although the only way to really tell for sure would be to go and see her – something I can’t physically do – can’t drive to her AND can’t be around anyone who is sick – very frustrating. But, I do believe she is improving and that it is probably some kind of flu. Still, I appreciate any prayers you can send her way.

Love and peace,

Lisa

One more thing . . .

2 Jun

Please keep my Mom in your prayers, she is not feeling well. She thinks it is a flu bug of some sort. But, I know that she has been way over worked by me, my situation and my stupid post surgery needs. So, she is run down and I am worried about her.

She takes care of everyone else, puts everyone else first. I hope she feels better fast.

Much love,
Lisa

A little better today . . .

2 Jun

I am doing better today than yesterday/last night.

I am so tired, pretty weak, but, definitely the pain is lessening.

I just wanted to check in and let everyone know that I am less miserable than I was 12 hours ago – so that is some progress.

Thank you for your continued prayers, I greatly appreciate it.

Love and peace,

Lisa

Not feeling so well . . .

2 Jun

Haven’t slept yet tonight . . . it is now nearly 4:30 am. I am either in pain or just can’t find a position to sleep in and then there is nausea and other issues along the same track (we’ll just leave it at that).

I am pretty upside down and I know that if I could get some sleep that I would be better off, but, I can’t seem to get any. I couldn’t stay awake when I was in the emergency room – fell asleep in the middle of the nurses questions. I don’t ever remember doing that before.

But, I had not slept in several days at that point and I had some pain meds in my system.

Today was a very slow one for me, moving slow. I did get in a very short walk, but, that wore me out and caused me some pain afterwards. I don’t know about this surgery I had. I know that I am better this week pain wise than last week. But, I just don’t know if I did the right thing.

What is done is done now, so there is not much point in thinking about what could have been. I just feel that I was pushed in a certain direction (okay, I know that I was pushed in a certain direction). And, the thing is, this was all done when I was under so much stress – going through cancer treatment, worrying about scan results, worrying about whether my cancer treatment was working – it was just such an unbelievably head-spinning time.

I felt shoved into doing a particular procedure, it was never presented to me as a choice . . . as in, “here, there are the following ways we can approach your reconstruction . . . ”

Instead, it was presented as the only option and when I came in to later meetings with my surgeon and presented other options, she basically told me that the option she wanted for me was the only correct one. She was very pushy about it and while I did have friends and family questioning it, I went ahead with the procedure my surgeon wanted to do. I know I am a pretty strong willed person. But, when you are standing naked in a cold exam room with your surgeon and two of her assistants all talking about you as if you are not there, then not even allowing you to get dressed or sit down before discussing your options . . . well, any hutzpah or just presence of mind pretty much goes out the window.

There is something about that dynamic that is truly very weird and . . . well, I don’t know the word for it . . . debilitating? Not sure that’s really the word, but, I sure as heck was not able to think or come up with questions. So, yeah, I felt like the whole thing was sort of crammed down my throat.

And now, I am angry at myself for not sticking up for myself better . . . or at all. This whole thing is so different, I think, for a woman who is unmarried and does not have kids. It is almost like you don’t exist in quite the same way for the doctor . . . they know that you don’t belong to anyone . . . there isn’t some man who is going to be pissed at them or that they have to keep happy. So, instead, they can just kind of push you around.

Well, I am just in pain and have nausea right now . . . not a particularly great combination. I can’t really fend for myself too well. But, I can’t continue to have my parents stay over night here, not getting any sleep. So, the past couple of nights I have stayed on my own. It doesn’t really matter I guess, since I am up all night anyway. But, it is hard being here by myself. I know there are people I can call who can come over if I were to need anything – and my brother Paul is only a few miles away – if there were some kind of emergency. So, I’m covered that way.

It is just the simple things, like trying to get a glass out of the cupboard, food out of the fridge and good luck trying to raise my arm high enough to put something in the microwave.

It is tough being single, doing this cancer thing single. On the other hand, it could definitely be worse.

I just need to get well and fast. I need to start taking Tamoxifen. But, I can’t do it until I get upright from this surgery. Tamoxifen causes a lot of difficult side effects. So, I need to get past this surgery enough before I can start taking Tamoxifen.

I am just so incredibly worn out and I am beginning to really worry about when I will ever be able to get back to work. And, still so shocked that there are literally no organizations that provide financial assistance to cancer patients . . . it is all about the cure . . . certainly a worthy cause. But, how does someone get through this without financial assistance? It is impossible.

Cancer Bridges, I intend to fix this hole, there has got to be a way. Susan G. Komen raises millions of dollars for research, Lance Armstrong provides valuable emotional support, American Cancer Society . . . well, I haven’t figured out what they do, because for me, they have simply referred me to everyone else . . . seriously, that’s what they do.

I don’t know. I shouldn’t write at 4:30 in the morning when I am in pain and sick to my stomach. But, I have to think that if I didn’t have to worry about where my next rent payment was coming from while I am sick, that I would probably feel less sick. We have a pretty grim system if you ask me.

It will all sort out I suppose. But, today was just rough. I am so tired of not feeling well, it needs to stop. And, watching my parents suffer like they do, it is just absolutely, absolutely too much. This is not how things are supposed to be.

Please keep up the prayers. I know there are many people praying for me and I greatly appreciate it.

I just want to get back to my life, back to work.

Much love,

Lisa