Tag Archives: breast reconstruction

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

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Friday . . .

14 May

I saw my surgeon yesterday. She confirmed what will be happening on Monday. I will still have the reconstructive surgery on my left side. But, now will have the expander on the right side replaced. That means surgery on both sides. It is too bad that the expander did not last and ruptured. But, I am grateful that at least if it had to happen, it happened in time to have it dealt with in the same surgery on Monday. If it had ruptured a few weeks later, then I would have had to go in for another surgery just to take out the ruptured expander and put in a new one.

I was really glad that this surgery I would only have one side of my body involved – and so, only one arm limited post-op. But, now, since it involves both sides, it will mean both arms are affected like last time. That means no moving either arm for a bit and then just the recovery that is needed is needed for both. Bummer. I was looking forward to being able to do things for myself. Aaargh.

Still, I have to think that the recovery from this surgery is going to be much better, faster, easier, etc. than the last surgery. The last surgery was on the heals of chemotherapy which really had me dragging. I know I am much stronger now than I was back then.

Today I am trying to take care of everything that I can, phone calls, bills to pay, grocery shopping to do, cooking, cleaning and dealing with my idiotic landlord. It is pretty hard to do stuff right now as there is some significant pain from the broken expander. So, I am working at half speed . . . if that 🙂

I still do not have caretakers lined up – but, I hope to get that taken care of soon.

My brother Paul is going to drive me to the hospital on Monday – so grateful for that – as I have to be there at 5:00 am.

Well, wish me luck with everything and please continue to say prayers for me.

Love and peace,

Lisa

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Oh Brother . . .

12 May

Well, just when I thought I had enough on my plate (okay, more than enough, thank you. I have all the helpings of “enough” that I can tolerate) I just discovered another little gem.

I was getting ready to go into my cardiologist’s office to have another EKG and I discovered something that is not right. I have expanders that were place when I had the mastectomy last year. These are to remain until I have breast reconstruction. Well, it appears that one has ruptured or broken inside. I don’t know what the technical term would be, but, it isn’t so good.

I called my surgeon’s office to let them know that something isn’t right. It is on the radiated side. I hope I am wrong, but, it doesn’t seem good.

I have been having pain and swelling down my right side and under my right arm. I think it is fluid that has escaped from the expander. Ugh. I have heard this can happen, although it is not supposed to.

I don’t know what is done if the expander ruptures. I presume they have to go in and replace it, but, can they? Crap.

Well, please say some prayers for me, I really need it.

Much love,

Lisa

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Dance, baby, dance . . .

12 May

It is now almost 3:30 in the morning, haven’t slept yet . . . unfortunately, sleepless nights have been a pretty standard occurrence for the past year and few months. I am tired of being tired.

But, perhaps the most tiresome is the constant dance that this disease makes you do . . . cancer is that cruel cowboy that fires a gun at your feet and says, “Dance”!

I have clear scans, something I am so grateful for, so grateful. And now I am supposed to have reconstructive surgery next Monday. However, I am not cleared for surgery yet – my pre-admission screening included an EKG, chest X-ray and bloodwork. The chest X-ray and bloodwork came back fine. The EKG did not. Scary. I also had an echocardiogram. I do not know the results of that test yet. Hopefully the echocardiogram is fine.

I am very worried about the abnormal EKG because herceptin has the potential to damage the heart. I recall not feeling well the day of the EKG. I was definitely feeling some distress. But, I did not expect what I felt to show up on an EKG. And, I don’t know if that has anything to do with it anyway.

I am just worried. Anyone who has to undergo chemotherapy worries about simply surviving the treatment. I am hoping, of course, that all is well. I have just never had an abnormal EKG before.

Tomorrow I will see my cardiologist’s nurse practitioner. She will conduct another EKG and she should be able to tell me the results of the echocardiogram. I just hope that the results are good. My appointment is at 4:00 pm. So, I guess I will know more soon.

Please say some prayers, I greatly appreciate it.

Love and Peace,

Lisa

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home from hospital

8 Sep

Hi all,

I ended up having to go to the emergency room this past Saturday, had a temp of 102.8, which is dangerous for me. I was admitted to the sub icu floor (something between a regular hospital situation and the intensive care unit, they are able to keep a closer watch on you I guess). My blood pressure ranged from 79 over 35 to 190 over 90 . . . crazy. Anyway, they ran a bunch of tests (THAT was fun) and are still waiting back on blood cultures to see what kind of infection I had or if maybe I had a virus. My fever went down in the hospital and they kept me around for a couple of days to watch my blood pressure and to see if they could figure out the source of the infection. So far we don’t know. But. there are still cultures that we are waiting on (some take just 24 to 48 hours and some take up to 5 days). If the cultures are all negative, then the presumption is that I had a virus. Anyway, I am on antibiotics either way.

My immune system is pretty taxed after the chemo, so I am prone to getting pretty much any cold or flu or whatever, but because I have a weakened immune system it’s tough for me to fight it off.

Anyway, I am home . . . so grateful for that!

I have three doctors appointments this week (it is like a full time job this cancer thing). But, today at least I don’t have any, so I can rest. I have one on Thursday am and one on Thursday afternoon and then on Friday. I am very much looking forward to the appointment on Friday because it is with the specialist up at UCLA. She is great – please pray for me that she has some good news for me, because I could really use that right now.

Marv – words can not express how much I appreciate your taking care of my pup Molly. I know it can’t be easy. But, your caring for her has made it so much easier for me. Thank you so much!

okay, I am going back to bed, please feel free to send me a message here, or to email me. I miss everyone so much. This dang cancer thing can be so isolating.

Please continue keeping me in your prayers.

Love,Lisa

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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

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Good news . . .

1 Sep

Good news, I have an appointment with the specialist up at UCLA in about two weeks. I wish it were sooner, but, she is out of town all of next week. But, it is not like I will be doing anything differently prior to meeting with her anyway. I am very excited to meet with her as she will definitely be able to assess my situation and give me a plan that I can believe in and trust.

I spoke with my surgeon yesterday and she said that a little typing is okay, just stop if it hurts. Well, it already hurts a little, so this will he kind of short.

I spent the entire day in bed yesterday – no t.v., no movies, just resting (mostly slept in a quiet, dark room).

My only outing was at the end  of the day – a friend of mine took me to a hair salon down the street from my house so I could dye my hair; I like  it (what little hair I do have), the color is sort of a strawberry blond. It beats the white hair that was coming in (which my doc said was temporary, still, it was getting old). One advantage of having hair that is only about a 1/2 or 1/4 inch long is that it does not take long to dye. After chemo it is typical for your hair color to change and to come back in curly (assuming you have straight hair to begin with it). I also supposedly comes back in thicker. My hair is growing pretty fast. But, it started coming in white, then dark so now (before I dyed my hair) it was kind of a gray color overall. My docs say eventually I will get my own hair color back. We shall see. Until then, there is hair dye 🙂

I am getting my bike back tomorrow! Woo-hoo! It is not much of a bike (I had a really nice one, but it was stolen last year). But, it is the only bike I have right now and it fits me (not too big etc.). So, I am really  glad to be getting it back. I probably won’t be riding it right away, but at least I have it back and so when I am up to it, I will be able to go for a spin. I have been trying to get this bike back for I think over tw0 months now. Anyway, enough said on that, I am glad to have it back today!

Well, I am sure there is more to say, but I am just too tired,

I am doing okay, still very tired and in some pain. But, all in all, I am doing better. I plan on another day of rest today. My surgeon says to expect 8 weeks for a “full recovery” from the surgery. If that is the case, then I am nearly halfway there since it has now been three weeks and four days!

Please continue to keep me in our prayers,

Lisa

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Just a short one . . .

30 Aug

Woke up in pain, but that is kind of the way this thing works I guess for me. But, then you eat a little bit, take a pain pill and things improve, at least that is how it seems to be going. I had backed off on the pain pills last week and my visiting nurse gave me quite a lecture about that. She said now is NOT the time to be cutting back on that. Still, the dosage my doctor gave me I think is way too high. I simply don’t weigh that much and if I were to follow her schedule, well, I would be half asleep and nauseous all the time. So, we have figured out a happy medium I think. I still take the medication, but spread it out over more hours. This seems to work for me and even enabled me to meet up for a short dinner with friends last night. Then it was back home, back to bed.

If it weren’t so darned hot outside, I could take walks or go to the beach, but it is just blazing hot here in Orange County. It has been in the 90s and that is just way too hot for me to be out in. I look forward to cooler times soon.

I am improving every day. I am still exhausted and still limited in what I can do. But, considering what I have been through – 2 1/2 months of chemo and major surgery, I think I am doing pretty darn well – and my doctors think so too. They have told me I just need to be more patient and give myself time to heal.

Okay, I am going back to bed now: rest, rest, rest, rest, rest, rest, rest!

I can’t wait to be able to go swimming, ride my bike – if I ever get it back (long story, probably just have to buy a new one), when I am up to riding it again – which I think will be maybe three weeks or so, and just being able to resume normal, fun things.

Please, please, please keep up with the prayers – they are working!

Love to you all, Lisa

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I know, I know, not supposed to be typing . . . bad patient!

30 Aug

But, I just had to let you all know that I am feeling a lot better tonight (probably because I wasn’t typing 🙂 or over doing it in general). I rested a lot and a dear friend looked after me all day. Finally, my parents get a break, they have been here every day, my Mom has stayed with me every night. So, now she gets a break and so does my Dad. I am so grateful for their love, support and for being so smart! I am so lucky to have them as parents.

I had the energy to go out to dinner with some friends for a girl friends birthday. I put on a dress, make up, the whole deal. It was great to be out for a little bit.

Now I am going to bed and plan to spend most of tomorrow in bed as well (it proved to be the best route for today).

Please keep me in your prayers.

Love to you all,

Lisa

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Sorry been too groggy to be bloggy . . .

29 Aug

This past week has been a series of doctors appointments, pretty much one every day this past week. Also, had my Herceptin treatment (finally) this past Monday. It was my first three week dose (prior to now I have gone weekly for Herceptin, but now I only have to go every three weeks for a triple dose). The Herceptin treatment made me sick (they ran it over one hour, it is supposed to, at least UCLA does it this way, be run over 1 1/2 hours). I have always had to have my weekly treatments ran over an hour instead of 30 minutes (the usual infusion time for a weekly dose). Otherwise, I have reactions and get sick after wards. So I figured that when I went to the “once every three weeks dose” that is usually done in 90 minutes, that mine would be done in the normal Lisa double time. But, my nurse (not the one that I adore, who understands my sensitivities to infusions and how I react) said no. I asked her to explain it to my doctor and she did and he also said no. They said I could have a one week infusion over one hour or a three week infusion over one hour.

What is their problem? So, I was forced to choose between getting the amount of Herceptin that I knew that I needed but also get sick or take a smaller dose and leave without getting sick. I decided to get the triple dose (knowing I would have some reactions) because I have already been off of this critical drug for nearly a month now and I just did not want to risk taking the smaller dose after such a long absence from this drug.

So, I felt pain during the infusion (totally unnecessary if it were run over a longer period of time) and then came home with a fever and flu like symptoms which lasted a few days. Trust me, coughing after you’ve had a mastectomy is very unpleasant.

I spoke with my favorite nurse about the shortened time for the infusion (she was out on Monday, so could not intervene) and she said that she would straighten it out for next time. She feels that it should be administered over about 2 1/2 to 3 hours with a watchful eye and slowed down if I experience pain. I just can’t afford to go in for treatment when she isn’t working that day.

Let’s see, what else. Oh yes, saw my reconstruction surgeon – she waited on expanding me (I am glad for this, less pain to deal with this week). She also does not want me typing right now – so this will be my last post perhaps for a week or more – bummer.

Saw my oncologist (not the specialist that I love) –  nope, the goober that I detest. He was less unpleasant after I kind of lawyered up on him last week. He is now too afraid to say anything negative (which by the way, was NEVER my point. I want the truth, whatever that is. But. he can’t keep anything straight during our meetings and his “advice” once nearly killed me – sent me into anaphylactic shock – I have now since found out that the PA who advised me incorrectly on premedications for one of my chemo rounds was working under him and following his advice – NEITHER of them – the doctor or his PA – consulted my chart because if they had they would have seen my prior allergic reactions and would have instructed me to take more of the medication not less, or as in their case, telling me to take none). Anyway, need to stop dwelling in the past.

I hope to see the specialist up at UCLA very soon to go over my pathology report. I am told right now that I have about a 20% chance of having a recurrence within the first year. This is what my oncologist said. Have no idea what that means, the first year after treatment is completed or the first year after surgery or what? I don’t bother following up on many questions with him now because he nearly always conflicts himself and I am left worse off, more confused than ever and pretty depressed. So this time, I went the, “not going to allow the butthead to depress me” route and left it at that. Besides, my specialist up at UCLA is the one I trust and so I will hopefully feel better after seeing her again. Until then, I will hang on to my having an 80% chance of NOT having a recurrence within a year (whatever that means). I mean, what does it mean for the year after surgery, or the year after I have completed treatment or what? I don’t know and maybe really know can tell me these things. But, I sure won’t waste my time asking Dr. Bonehead any of these concerns for his answers will not shed much light on anything or be something I would trust or rely on.

Let’s see what else, oh, I am anemic now, can really feel it too. Very slow moving. I was very anemic after surgery (probably from a combination of blood loss and chemotherapy), but have improved significantly since then and I am sure I will get back to my non-anemic self soon. Until then, the sloth makes her way up or down stairs out of necessity only (damn stairs)! In the hospital they wanted to do a transfusion, but I had not signed a consent for that (I am such a brat aren’t I?) Anyway, I told them I would not consent until my surgeon came by to see me and low and behold, yeah, my surgeon agreed we should wait on the transfusion. Phew!

Okay, it is pretty much too painful to continue now. I have stop typing.

I am doing okay, still recovering, still need lots of help doing just basic things and would love to hear from you (phone calls are great and so are emails or messages here or on face book messages). Just remember I can not type back at least not for a while.

Keep praying for me and for my family. Love to you all.

Lisa

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